Do You Have Strange RA Symptoms?

What are the strangest symptoms you’ve had since the RA onset that you think are related to the rheumatoid arthritis / disease?

Cocoa fire truck - strange RA symptoms postFor some, strange RA symptoms like fevers, weight loss, and laryngitis turn out to be perfectly accepted historical symptoms of RA that patients just aren’t told about. However, sometimes people ask about unusual symptoms that I haven’t experienced or read about. So I have to tell them I’m sorry and I don’t know.

I wonder if we look at them together whether we might find common themes.

 

Some of my strange RA symptoms:

  1. Swollen tonsils or lymph glands on one side or the other
  2. Periodic symmetrical rashes on arms or palms
  3. Brief painful electric shock-like sensations

What strange symptoms have you experienced related to RA?

UPDATE: Hundreds of patients have shared strange RA symptoms on the comments pages including fevers, eye problems, rashes, vasculitis, tight tendons, laryngitis, weight loss, rib pain, and many more. You can share your strange symptoms and read through the pages to see if anyone shares your symptoms.

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Kelly Young

Kelly Young is an advocate providing ways for patients to be better informed and have a greater voice in their healthcare. She is the president of the Rheumatoid Patient Foundation. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. Through her writing, speaking, and use of social media, she is building a more accurate awareness of Rheumatoid disease aka Rheumatoid Arthritis (RA) geared toward the public and medical community; creating ways to empower patients to advocate for improved diagnosis and treatment; and bringing recognition and visibility to the Rheumatoid patient journey. In 2009, Kelly created Rheumatoid Arthritis Warrior, a comprehensive website about RA of about 950 pages and writes periodically for other newsletters and websites. Kelly served on the Mayo Clinic Center for Social Media Advisory Board. There are over 42,000 connections of her highly interactive Facebook Fan page. She created the hashtag: #rheum. Kelly is the mother of five, a home-schooler, Bible teacher, NASA enthusiast, and NFL fan. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She has lived over nine years with unrelenting Rheumatoid disease. See also http://www.rawarrior.com/kelly-young-press/

329 thoughts on “Do You Have Strange RA Symptoms?

  • June 24, 2011 at 9:57 am
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    I don’t have any really weird ones that aren’t counted as possible symptoms. But despite things being better with the joints with the Humira and methotrexate cocktail, my fevers and the dry eyes have never abaited. No one talks about RA causing uvetis and consequently glaucoma. That’s where I am now.I’ve never had any eye problems in my life and now I have two sets of eyedrops just to control what RA has done to my eyes.

    And can I just whine for a moment and say that I’m really tired of running fever every single day of my life? Thanks. Just had to say it to someone who understands. My husband is supportive but sometimes he just doesn’t get it with the fever thing. 🙂

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    • June 24, 2011 at 10:38 am
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      Hi Kim. Good point about the eyes. No rheum doc I’ve met mentions them, but they are typically affected. Like you, mine suddenly changed & I had problems & needed an ophth. doc for the first time in my life.

      My kids hear my fever whine every day. A fever every day does get really old, doesn’t it?!!!

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    • June 24, 2011 at 10:39 am
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      Same here with eye problems – dry. But for me, it was one of the first questions my rheum asked me: are my eyes or mouth feeling very dry?

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      • June 25, 2011 at 5:29 am
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        Hi Kelly and Yvonne,

        I’ve had poor eyesight since I was a child (I’m wondering about an auto-immune connection with every ailment I’ve ever had!). As a result, I have a long term relationship with my optometrist – he asked about my eyes and alerted me to arthritis risks to my eyes as soon as I let him know about my diagnosis. He now checks for symptoms at every visit.

        He also let me know that he checks for diabetes side effects (cataracts and changes in the retina which are early signs to the onset of diabetes). Handy to know that he’s keeping a look out for these things even if I don’t know it.

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    • July 4, 2011 at 12:39 am
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      My feelings exactly Kim: “can I just whine for a moment and say that I’m really tired of running fever every single day of my life?”
      I am so, so sick of it too. I can’t tell you how much, but you know. Does your fever climb higher with activity? Mine does. It’s like my body saying “no way, you can’t do anything, go sit down”. My Doc is befuddled and concerned that it seems uncontrollable. If you ever find a solution, let me know.

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    • July 20, 2011 at 2:11 am
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      I agree about my RA doc never mentioning my eyes being affected. Not until I noticed a change in my eye sight ( took plaquinel for 13 years) two years after stopping plaquinel that my eye doc said RA causes dryness. Fun fun.

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      • July 14, 2012 at 9:53 am
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        Checking my eyes was one of the main things my doc mentioned. He demanded that I have an eye exam with an ophthalmologist every 2-3 months AND one that had experience with RA patients!

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  • June 24, 2011 at 10:03 am
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    I’ve been experiencing very intense itching on my hands and feet once or twice a week. It comes on quickly and feels like an allergic reaction, but doctors haven’t been able to identify an allergen. Could this be an RA symptom? No one has ever mentioned a possible connection.

    Thanks, Kelly, for all of the fantastic work you do on behalf of RA folks!

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    • June 24, 2011 at 10:34 am
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      Don’t know what the cause is, Fred. But sounds similar to mine maybe. I have intense itching in the palms or bottom of foot & then the skin hardens and flakes off. Then happens again.

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      • June 25, 2011 at 1:05 am
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        I have the red palms, but they mostly do not itch. Every once in a very great while I WILL get itchy spots on palms and soles, then get fine skin peeling, but not drying/flaking. I sometimes get what are fine, skin colored bumps on forearms. Sometimes those itch a bit, but they go away on their own. But now I have some new very annoying rask on elbows and knees. Trying OTC treatments, but nothing has worked yet. Hoping it’s not the plaquenil in combo with my new higer dose of MTX – because both are working very well together for my RA. Best combo I’ve been on yet and allowing me to get off prednisone. I’ll die if I have to drop the plaqeunil!

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        • June 25, 2011 at 1:06 am
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          but, I have been on the plaquenil for maybe a year or close now.

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      • June 29, 2011 at 7:56 pm
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        Hi Kelly, I am new to your site. I think you do a great job and have a very informative site for us RA people. I just had to comment on the palms and bottom of feet thing I get the same exact thing and no one can explain it. Thanks again for all the hard work.

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    • June 24, 2011 at 12:04 pm
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      Fred: Are you on plaquenil by chance? I have the exact same problem with the itching, and it started around the same time as I started plaquenil.

      About once per day, I have an itching episode. It’s usually on my legs or arms. It actually feels like little bee stings or needle pokes all over. I have scratched myself until it caused huge patches of broken blood vessels. The episodes can last an hour or so and then they go away.

      Plaquenil is known to cause severe itching, so my assumption is that it is the cause of my issues.

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      • June 24, 2011 at 12:11 pm
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        curious to see what Fred says. I’ve never had Plaquenil. But Lortab makes me scratch all over. Different from fierce itching on palms that I’ve had for years though.

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    • June 24, 2011 at 12:11 pm
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      I have several strange symptoms that presented at the same time as the RA (about 1.5 years ago).

      Laryngitis (was strange to me at the time, but I now know it is common)
      Major vertical nail ridges (not pits like in PsA)
      Unexplained bruising on legs
      GERD
      IBS (with constant bloating)
      Bilateral hip bursitis
      Toenails break off at the bottom

      And now it seems as if my hair won’t grow at its normal rate. I am not on mtx or arava. I was on mtx about a year ago, but I stopped due to hairloss. And now it won’t grow back! It’s very frustrating.

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      • June 24, 2011 at 12:48 pm
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        Don’t know if it will work for you but I thought my extreme hairloss was tied to MTX use but since it was helping I couldn’t imagine giving it up. However what ended up completly stopping and correcting my hairloss was Vit D. I did the 50,000 IUD once a week for 8 weeks the difference was remarkable.

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        • June 24, 2011 at 6:02 pm
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          Thank you April for taking the time to reply! I wonder if you were deficient in Vitamin D? I will give that a try.

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          • June 25, 2011 at 1:08 am
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            Many RA’ers are deficient in Vit. D. I was. Waiting to hear what the results of my last test for it was to see if the OTC doses I’ve been taking have kept it up after having taken the RX doses of Vit D a few years ago.

        • July 7, 2011 at 12:30 pm
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          It doesn’t surprise me about the vit D — I know I feel better in the summertime. Being in northeast PA, the winters are brutal. But I didn’t realize it could be causing my hairloss. Thanks!

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      • June 25, 2011 at 6:14 am
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        I am on MTX and have noticed some hair thinning. I am doubling my folic acid and the doctor recommended B-complex vitamins.

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        • June 27, 2011 at 8:57 pm
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          A rheumatologist I saw two times 3 years ago suggested that if I had problems with hair falling out due to the MTX to take an extra folic acid several times a week and that should help. I didn’t have the problem then or now, but always remember what she said and I still take an extra Folic twice a week and Vit D every day.

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      • July 7, 2014 at 10:47 am
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        Marie, I get the vertical nail ridges, too! And I had the funky hair loss. I had to take vitamin D 50,000 U twice a week. Now, it is growing back (but post-MTX, post-diagnosis-it’s CURLY)

        Reply
  • June 24, 2011 at 10:12 am
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    The weirdest symptom I’ve experienced is urticarial vasculitis.It was a huge,painful,humped,hive-like thing on my back. It showed up a few weeks after my very first flare, and then again 3 months later. O_o

    Reply
  • June 24, 2011 at 10:12 am
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    I live in Alabama. On April 27th of this year we had tornados and warnings all day. The terrible weather started around 5:30am and lasted thru the night. Every county in Alabama was under “Tornado Warnings” at the same time. A day I will never forget. The strange thing that happened to me was on April 26. I awoke at 3:30 am in the morning crying because I was in so much pain. Turns out that I could not bend my right leg, because it was swollen, hot to touch and the pain was unbearable. By 8:00 am that morning I was in the waiting room of my MD’s offfice. He drained my knee, shot steroids and novacane into my knee and I limped my way back home. Now I know that I really do have weather knees.

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    • June 24, 2011 at 11:18 am
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      The day the tornados came through Fayetteville, my feet were more swollen than they have ever been. When I took off my flip-flops you could see how my feet had swollen up and around the straps.
      Now whenever we have severe weather, my dear s-i-l always texts me to find out if my feet are okay or not. haha

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    • June 29, 2011 at 2:44 pm
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      Kathleen, I live in Alabama too. I was actually getting my Remicade infusion on April 27th. The 26th was miserable for me – pain and swelling. I spent the entire infusion watching James Spann out of Birmingham on the internet in horror. And it took longer than usual for the remicade to “kick in.”
      But yes, anytime a front passes through I flare and swell – so add me to that list.
      I’m wondering if the stress of that whole day didn’t have an effect as well.

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    • June 29, 2011 at 2:57 pm
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      I majored in vocal performance in college. RA has destroyed my singing voice.
      I’m often hoarse and raspy as well.
      When I stretch my sternum “pops.”
      I get itchy rashes on my arms sometimes.
      I flare when I have my period.
      Brain fog\trouble remembering things like, uh, words.

      Reply
  • June 24, 2011 at 10:14 am
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    I have also had those electric shock-like sensations. I was attributing that to Type 1 diabetes since nerve damage is common, but at all dr. visits I don’t seem to have any nerve damage.
    I developed a trigger finger – don’t know if that was due to the RA or not – didn’t have it before the RA
    I am also seeing a greater hairloss – much more so when I was on prednisone (like handfuls at a time) – now I think it may be middle age setting in.

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    • June 24, 2011 at 10:31 am
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      Sharon, where are the shocks? I quit telling people cuz it sounded too odd & then a woman on Twitter told me that was key to her rheum vasculitis diagnosis.

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      • October 24, 2011 at 7:50 pm
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        I, too, have electrical impulses in the balls of my feet and throughout my toes. This happens in the mornings when I get up and sometimes after a daytime nap.

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        • July 13, 2012 at 4:26 pm
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          I have had similar twinges- I call them. I found out that I have Raynauds- and that is most likely why I get this. Raynauds affects your fingers and feet- circulation problem. I have always had cold hands and feet- no matter the weather. Also Vitamin D is generally deficient in anyone that has an autoimmune disease. It is really important to have that level checked periodically and it does not hurt to take Vitamin D. Most people who are not sick- get enough from being outside- the sun. Most of us are on drugs that the sun is not our friend and will cause sunburn or rashes from too much time outdoors- and if you are having a flare you are most likely not wanting to go outside…lol. Sometimes its a no win situation. But I have discovered since moving to the desert and being on Vit D, Enbrel and Mtx only these days that I have way less problems. It has been a great relief for me….and this year and last year I actually got a suntan- I have taken up kayaking on our local lake. Its a great aerobic exercise and I get lots of Vitamin D time….lol

          Reply
    • September 21, 2012 at 12:20 am
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      I’ve noticed when I have a flare-up that I have the so-called “trigger finger” as well. It varies between my thumb, forefinger, and middle finger, and can be on either hand. It’s annoying enough that I have to hold it with my other hand until the twitch-like symptom goes away. I have noticed more recent itching also, on my legs and the bottom of my feet, which goes away with generic Cortisone cream. The fever, I just attribute as normal now, since it’s present almost every day.

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      • September 28, 2012 at 8:44 am
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        Hey Chelsea, are you sure the itching isn’t a side effect of one of your meds? It’s a common side effect so maybe you can keep an eye out to see when it happens. Although you might also be having dryer skin with RA. The fevers are a sign of inflammation & lots of us have them – it’s a sign that the disease is not controlled. You should make sure your doctors know about the fevers.

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  • June 24, 2011 at 10:16 am
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    I have been waiting for a post like this, and am anxious to read what others report. I think this will help many of us see we are not ‘crazy’.
    My strangest symptoms started 10 -12 years before my joints were even affected, and some continue even now:
    rashes, swollen glands in my neck that came and went, lumps under my arm that resolved on their own, fevers, palms turning red and hot, bruises all over my legs, laryngitis that struck only in the evenings and disappeared the next morning only to return at night again, esophageal thrush, staph in my nose, numb toes, stinging of my hands and feet, dizzy spells,gastrointestinal symptoms, and the feeling I was wearing stockings on my hands and wrists. And of course fatigue – devastating fatigue.
    As you can imagine, this absolutely baffled my doc. But he kept at it, confident that this was auto-immune despite negative blood work. Last year my ANA came up positive, so my rheum treated me, first for lupus, and now for RA also. she also thinks that Crohn’s may be involved too.

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    • June 24, 2011 at 10:30 am
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      thanks for posting, Yvonne. Yes, reading others might be helpful.

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    • June 24, 2011 at 4:17 pm
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      Hi Yvonne,
      I constantly battle thrush also….Even when I’m not an antibiotics or prednisone…it’s still there. Nystatin and I are good friends!

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    • June 25, 2011 at 1:13 am
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      Yyvone, I’ve at times had the hand/foot, stocking/glove like sensations but not for long. Sometimes a sort of laryngitis too.

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    • June 25, 2011 at 9:18 am
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      Reading your list, I saw some of my weird symptoms too – staph infection in nose (baffled my ENT), red and hot palms of hands, and intermittent swollen glands. The tail of my right parotid gland has had a lump in it for over a year. The ENT had it scanned which showed nothing. No explanation, though. It was nice to hear that my dry eyes, throat hoarseness, dry cough, bouts of flushing/sweating, itching hands and joints, and dizziness could be from RA. Kelly, thank you for this site. It has taught me so much!

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    • October 29, 2013 at 3:08 am
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      I have LITERALLY all of those exact symptoms constantly. the constant fever or just feeling like crap. Everyone thinks im crazy if i complain too much….
      i get rashes like crazy, all over the place…my chest, inner thighs, upper arms…etc. I also have been battling a chronic staph infection for several years now, and it just likes to come back every now and then….
      I get horrible headaches in my eyes and temples…. this is a daily struggle for me, as well as the “foggy” feeling in my eyes obstructing my vision.
      I also experience shortness of breath and tightness in my chest on the daily… especially when i try to relax and go to bed… then i cant sleep…

      Reply
  • June 24, 2011 at 10:29 am
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    rash on arms and around neck, lots of catarrh in throat ;o(
    eye problems, either dry or blurred vision

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  • June 24, 2011 at 10:37 am
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    Before the ra diagnosis I had occasional laryngitis, but not since. I had carpal tunnel before ra, and would welcome it back instead. Because at least carpal tunnel goes away for a while. To Sharon, try Biotin for hair loss. I used it and then stopped for month and the hairloss came back. It’s now one of my “important” supplements. Right up there with folic acid. Thanx, Kelly for all you do.

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  • June 24, 2011 at 10:51 am
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    Mine started with numbness and tingling in my hands, legs and feet. I also had difficulty walking (not realizing my joints were stiffening up, because it never happened before). I couldn’t verbalize what I was feeling and for that, I think I was shipped from internist to neurologist after neurologist. I was having pain in my hands, even the soles of my feet. I didn’t even notice the swelling until this past fall…all I knew was that I could “feel” that something was wrong inside my body with no explanation. They tried to send me to a psychiatrist. LOL As a last ditch effort I referred myself to a rheumy and she diagnosed me with Fibro. I spend a whole summer on Fibro. meds with no effect. I was finally able to pin point my pain/problem-I told her I have no muscle pain at all, my ankles hurt to the point where I could use a walker, except my wrists hurt so bad that I can’t hold one. I told her that when I do paperwork, my hands and fingers hurt and swell, etc. She finally ordered X-Rays…erosion and damage…RA!

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    • June 24, 2011 at 11:13 am
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      Sue, it seems like the rheum doc wasnt really checking to be sure you didn’t have RA before treating you for fibro instead. That is very disheartening as MaryLynn just said on the last post.

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  • June 24, 2011 at 10:57 am
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    I also get “electrical shocks” going through my fingers. When they hit I have a mental image of zig-zag electricity going through, from my knuckle to my fingertip. I get a zap in one finger, then another, then another and after a few minutes, it is over. It has now also started in my big toes.
    I also have dry eyes that started 2 years before my diagnosis. My eye dr told me I have the fastest tear evaporation rate she has ever seen. I guess the typical rate is 7 secs. Mine was virtually instantaneous. Not sure if it is related to the contacts I wear (I can wear then all day and night except for a 24 hr period each week). I am now on 2 sets of eye drops, one for when I wear my contacts, and one for when I take them out. Not sure if this is related or not.
    I also have redness on the bottom (palm side) of the hands. It is like a horseshoe shape from the thumb side of the wrist, around the meaty area where the fingers come in to the palm, and then down the pinkie finger side. There is also a lot of swelling in these areas. The more swollen they get, the redder they get. Why does my rheum not want to see that as much and says he really only looks at the swelling on the top of the hand?

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    • June 25, 2011 at 1:23 am
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      I have had three or four brief episodes of electric shocks, not in fingers or toes, but up my back. Not had them in a long time though. But have had sharp shooting pains into some toes, and sometimes pain under my finger nails, but only certain ones on hands and feet. Those were this last year but haven’t had them in a while. I have red palms like you describe but haven’t noticed those areas being swollen. Have felt like the bottoms of my feet were swollen under the balls of the feet though. I do have a deep-seated fluid filled cyst of some sort on the bottom of one big toe, and wonder if that fluid sometimes escapes out into the ball of the foot at times. I’m presuming the cyst formed to protect some RA nodules that might have formed on the bottom of the big toe. Have had it for about four years now. Couldn’t get rheumy to agree to try to either drain it or shoot cortisone into it. She was worried about injuring a tendon – even though she’s shot cortisone into finger joints before. Some day I’ll get my feet xrayed or MRI’d and figure out what it is.

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    • June 25, 2011 at 1:25 am
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      Question for everyone: feel around on the bottom of your feet in the arch area. Do you have anything that feels like a painless, sort of oblong lump? I have this and am wondering if maybe they are enlarge lymph nodes? They don’t feel like rheumatoid nodules.

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      • June 26, 2011 at 12:57 pm
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        Chelsea- My daughter has an enlarged lymph node on her neck. Her feet are good, but she’s always had this bump on her neck. No one could ever figure that out, either.

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      • June 30, 2011 at 11:19 am
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        I also have one under the arch o f my right foot. Normally it doesn’t hurt, usually it hurt when I do a little bit of walking.

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      • July 23, 2011 at 9:00 pm
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        I started developing nickel size lumps on my arch of my feet. Podiatrist said it was “Plantarfibromatosis” He surgically removed the one on my right arch…HUGH MISTAKE. They grew back! I have them on my other foot and one sticking out of my toe. Rhuemy said he’s never seen anything like them?????? I see a “new” dr in Aug…orthopedic surgeon…However, he WILL not be operating. I just wonder if it’s from the RA???

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    • October 29, 2013 at 7:19 pm
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      Lisa:

      What are the eyedrops you use, when you wear your contacts? I never wear mine because I have a terrible time trying to get them out of my eyes!

      Arla

      Reply
  • June 24, 2011 at 11:09 am
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    I have the craziest thing, when I am about to have a flare, one side of my body will get really hot feeling like I have a high fever and my face will turn beet red! It will feel HOT to touch! Really weird! Then afterwards, my whole body feels like it has been sunburned really bad, I can barely stand for my clothes or bedcovers to touch it. Sometimes it will even peel and itch just like a sunburn! But the feeling is on the inside! Has anyone else ever had this strange symptom?

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    • June 24, 2011 at 11:17 am
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      Jane, I’ve had that many times with the redness. Bright red and being someone who never even blushed or sunburned due to olive skintone. But when I have it, it’s not only on one side.

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      • November 23, 2012 at 8:38 pm
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        I have the flushing on one side of my face very often. I can feel it’s onset; it lasts hours usually. I also experience hotness of a couple fingers and the next finger will be ice cold, this is often bilateral but may be unilateral.

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  • June 24, 2011 at 11:12 am
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    “Weirdest” symptom has to be tinnitus. Could be a symptom of the meds rather than the RA, but definitely weird to have a constant low-level ‘buzz’ (like the white noise of a untuned radio) in my ears.
    Other really weird occurance that may be related to RA was the resorption of a tooth. Basically, one tooth was consumed/adsorbed by my jawbone. Had to get a steel implant and crown to replace the dissolved tooth. Dentist said it does happen at times, but he believes it occurs far more frequently in people with immune system disorders.

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  • June 24, 2011 at 11:32 am
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    Wow, Kelly—thank you so much for posting this today! I’ve been going absolutely nuts for the past five days with a laundry list of what I thought were weird symptoms: swollen lymph nodes along right side, stiff neck/dizziness, extreme nausea, intermittent GI distress, and a very strange itchy rash that lasted but a few hours. Since it’s been barely a year ago I was diagnosed with RA, the medication still gives me side effects, and I can’t always tell what is related to my wacky immune system and what isn’t. Rheumatologist never told me that I’d be experiencing laryngitis, eye problems, or any of those symptoms I had this week. As always, I am so incredibly grateful for your timing of this post and everyone’s valuable comments. We are not crazy—these symptoms are very REAL.

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    • June 25, 2011 at 5:38 am
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      Hi Jackie,

      I have almost permanent pain located in the area between my ear and my throat, I think it may be glands as I also get swollen glands. Also get itchy on the top of my feet. It drives me crazy.

      Reply
  • June 24, 2011 at 11:39 am
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    Ok I’ve got a doozy…swollen lumps on the top of my head! It is a swollen lump that is very sore to the touch, I can feel the skin stretched taunt over it. (So can my husband) One day I can feel it in the front and the next day it’s gone….then a few days later I will get one on the top of my head in the back. Some weeks I get them more frequently, some not at all. Have reported this to 2 doctors now & they both don’t know what to make of it.

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    • June 24, 2011 at 12:24 pm
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      Roberta, have you shown the lumps to your general doc to ask about what it might be and what specialist you might see for it? I feel like the comments here show we should all be seeing an immunologist…

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      • June 24, 2011 at 12:39 pm
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        Kelly I am sorry, I think I replied in the wrong spot.

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        • June 24, 2011 at 12:44 pm
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          it’s ok, I see it.
          I’ve had stuff like that too that I wanted a doctor to see. Maybe ask the docs if you can just come in any morning for 5 minutes to show it to them if it’s there so they can see it for themselves.

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    • June 24, 2011 at 12:46 pm
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      Roberta- I thought I was the only one with head lumps- I finally got dxd with PSA in addition to RA last year. Once I was treated for Psoriasis the “lumps” have gone down. But as Kelly says you should talk to the doctor and have a skin doctor look at those lumps- I did and was relieved to find out that it was the Psoriasis and not some strange disease..I have always had skin sensitivities and attribute them to RA – and of course now to PSA.

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      • June 24, 2011 at 1:33 pm
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        Thanks Brenda, I will bring this up to my rheumy at my next appt. Is there a test for PSA?

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        • June 26, 2011 at 1:11 pm
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          Roberta- Not that I’m a PSA expert or anything, but my son has moderate psoriasis. Usually a dermatologist or rheumy can tell by looking at it. A dermatologist can also biopsy the site to get a positive confirmation. Psoriasis is treated by MTX & Enbrel, so if you’re on one or both of those, you’re good. Oh, and you can have PSoriatic Arthritis (PSA) or RA with psoriasis separately. There are several types of psoriasis, but there are also many google sites that come up if you wanted to see some pics 🙂 There’s http://images.rheumatology.org/ (good for all!) There’s also https://www.psoriasis.org/ and http://dermatlas.med.jhmi.edu/derm/index.cfm

          I hope that helps a bit!

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    • June 24, 2011 at 1:06 pm
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      I’ve had those!! I could barely brush my hair! They were only on one side. This was before my ra diagnosis and my doc treated them with cortisone shots I would have multiple bumps! They have since gone away but man they were painful

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      • June 24, 2011 at 1:33 pm
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        Owwwww! Cortisone shots in the head??

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        • July 3, 2011 at 3:26 pm
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          Yeah! Owwwww is right but it hurt less than the bumps! Pain to get rid of pain just doesnt seem right does it? Haha

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    • July 13, 2012 at 4:33 pm
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      Roberta- I get those too. Go see a dermatologist. I did and found out I had psoriasis…they gave me some creams and shampoos and upped my mtx. It helped alot. I found that when I am stressed out those lumps will appear- It is not unusual if you have one autoimmune disease to get a second or third…and the insanity of it all is the symptoms often times are similar- and it takes a long time to diagnose….I have a great internist now, a good RA doc and a Dermatologist who all communicate with each other….Imagine that??? only took me 7 years to get that happening…..

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    • October 29, 2013 at 3:14 am
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      i get those too! in fact i have them almost constantly. I thought my head was just “weird”

      I also get rashes on my scalp, which i have seen a dermatologist for and they diagnosed me with Seborrhea… i get it on my eyelids too…

      Reply
  • June 24, 2011 at 11:40 am
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    I get the quick, stabbing pains in my limbs, and I have a scaly rash that has taken up permanent residence on the back of my right hand. My hair is falling out in large quantities and has basically turned into wet hay (yes, I’ve had every thyroid test out there – all normal.) I am newly diagnosed and still looking for a drug combination that works. And here I thought I’d just have a little pain when it was humid. Pshhh….. lol

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    • June 26, 2011 at 1:16 pm
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      Lisa- I had read somewhere that severe inflammation can also lead to hair loss. I was actually talking to someone recently about this. She said that her daughter’s rheumy told her that. My daughter did very well on Enbrel for about 2 years, but when she developed Dermatomyositis (among other things) the inflammation in her body was staggeringly high. At that time, her hair started falling out more quickly. Thank God she didn’t have visible patches, (she was 8 yrs old then) but she was losing way more than she should have. Since her inflammation started coming down, the hair loss tapered to a halt. If your RA isn’t under control, that may be the problem.

      Reply
  • June 24, 2011 at 11:48 am
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    my significant other has had weird rashes and cherry angiomas (not all of which have gone away), B12 deficiency that came on at the same time as her first RA flare (and associated nerve pain), electrical zinging pain that may or may not be B12 related but never happened before her first RA flare, occasionally waking up with a very raspy voice that sometimes lasts for days, extremely rosy cheeks, muscle/soft tissue pain and tenderness, needing way more sleep and waking up much less rested than before diagnosis. i wish i understood the nerve pain / RA connection better – it was one of her first symptoms when she first developed RA. what limited imaging she’s had doesn’t show any tremendous damage to joints yet so i’m not sure what’s going on. She also gets weird hives.

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  • June 24, 2011 at 11:53 am
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    I’m new to RA, so I don’t know if this is an RA problem, or perimenopause (I am 40) but hot flashes and night sweats, to like where I’m drenched and the sheets and pillows are soaked.

    And my teeth are crumbling. I”ve had 6 root canals in a year. I’ve been blaming my kids, but maybe it is RA.

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    • June 24, 2011 at 5:33 pm
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      Amy I have the same sweat/soaked bed problems you have. I don’t know if mine is perimenopause either. I am 47 but have been having this happen for the past 2 years (dx’d 3 years ago). It is AWFUL!!! It happens during the day too, now and flushing preceeds it. I also just broke a tooth yesterday (the whole outside part broke off and filling came out) but it doesn’t hurt cuz I think it’s one I had a root canal done on. I was excited to see someone else post about the extreme sweating! ugh.

      Reply
      • June 25, 2011 at 5:54 am
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        Hi Raini,

        I’m also 47, and perimenopausal. I’ve had RA for many years diagnosed over a decade ago. I’ve only just developed the night sweats, to the soaking the pillow and the sheets stage, so I’m thinking that has more to do with menopause than RA – but it ertainly doesn’t help! To make matters worse the more I sweat the more let cramps I get and as you can magine the pain of cramps in legs and feet and ankles already ravaged by RA is aweful!

        Recently had blood work done and decided to make sure I wasn’t dehydrated before the blood test. Interesting I found that having a acouple of glasses of water the night before and another couple the day of the test washed all the salt out of my system – so I had low sodium in the blood work. Considering I’m on medication for high blood pressure I’m a bit confused about the impact of salt on my blood pressure? The doc told me to add some more salt to my diet! LOL

        Another usual symptom to watch out for, as with many chronic diseases, is anaemia. I’ve been mildly anaemic for decades also have to keep up the vitamin D and watch out for B group vitamins. No wonder I’m pale and pasty to look at.

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        • June 27, 2011 at 9:05 pm
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          My guess is it’s menopausal. I’ve had RA for at least 12 years. I turn 50 next month and I’ve had a serious increase in the night sweats over the past year. Have had a couple during the day.

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    • June 24, 2011 at 5:34 pm
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      Amy,

      Are you taking prednisone?

      I get hot flashes too and used to get night sweats. I just turned 39.

      I think mine is from my predisone. I used to take it at night and would wake up at night sweating like crazy…like soaked bed sheets. I slowly moved the prednisone to the am and the night sweats have stopped, but I do flash still during the day.

      Reply
      • June 24, 2011 at 5:47 pm
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        Don’t know about Amy yet, but I have it without being on prednisone & even hormone therapy did not help. My obgyn is convinced it’s the RA. The endocrinologist has no idea. The rheum doc laughed that it has to be just menapausal symptoms.

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        • June 24, 2011 at 6:08 pm
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          OK, this is weird! I am 38 and have been having hot flashes and sweats for about 9 months. My gyn has done hormone testing which comes out normal. My rheumy says it is not the RA. What is it? This is frustrating because I can feel that my hormones are a mess. I have other symptoms that point to premature menopause as well. Hum….

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          • June 24, 2011 at 7:04 pm
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            It’s even weirder Marie. I know someone else who has been dealing w/this the last year and she had a hysterectomy years ago.

          • June 27, 2011 at 9:31 pm
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            I get these hot flashes swearts too but they occur at any time of the day and I am not on prednisone and I am only 35. talked to gyno she said its not hormonal because I am also on continuse bith control pills for medical reasons (horrible crapms for 3 weeks every time i get my period) talked to rhumey he said talk to your gyno and endo. Endo said your thyroid is in the perfect range with the meds I am on so that only leaves the RA!

          • July 13, 2012 at 4:37 pm
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            According to my RA doc and regular doc- the sweats and hot flashes are part of RA- however when you get close to having menopause – you also get those symptoms as well. Everyone is different ages in regards to menopause or periopause. Your GYN should be able to help decide if its a combination or if you are too young to be experiencing both.

    • June 25, 2011 at 1:33 am
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      I’ve had night sweats since before my RA diagnosis, but mostly just my head. I have hyperhidrosis in a ring around my scalp that I’ve had since a teen or before, and prednisone for sure makes it worse. It’s not quite as bad now that I’m down to 1mg prednisone.

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      • June 25, 2011 at 9:26 am
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        My head and face sweat profusely too and so does my daughters. Do you do anything for it that works…I’m such a sweat hog…I hate it.

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        • June 25, 2011 at 2:10 pm
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          Had a doc prescribe some cream (forget what it was) which I tried for a bit, but started sweating elsewhere more, and it was very expensive, so stopped using it. Read you can try botox injection or nerve surgery, but again, you can start sweating elsewhere more. Just stuck with it and trying to avoid things that ramp it up if you can. Doing things that raise my arms a lot like vacumming, sweeping, tennis does seem to ramp mine up. Weird. Prednisone made it worse.

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    • September 5, 2015 at 1:42 pm
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      Amy, you may have dry mouth or sjogruns. My dentist is rebuilding some of my teeth now, the lack of “good” saliva can lead to teeth decay. I use biotene lozenges and have teeth cleaning and fluoride treatment every three months. There are toothpastes that might also help but indeed to avoid them due to my skin allergies all over. My dentist understands RA. My rheum ueged me to see my eye doc and dentist as he diagnosed me.
      JoAnn

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  • June 24, 2011 at 12:15 pm
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    Many years before my diagnosis, I would get rashes near my knees, elbows, and thumbs that would itch intensely, harden, flake off and disappear. I also would get benign tumors in different parts of my body.
    Right before my diagnosis, I developed severe Iritis in both eyes. The ophthalmologist asked if I had been diagnosed with an autoimmune disease. His question finally led to a Rheumatologist diagnosing me with seronegative RA. I still sometimes get the rashes and intense itching, and I have had bilateral Iritis a few times as well.
    I also have tumors/nodules/cysts come up periodically. Right now, I have one behind my right knee, near the large joint on my right big toe, and near the large joint at the base of my left middle finger on inside of my hand. Does anyone else get these?
    I do have fevers, but not everyday. I also have night sweats which drive me crazy!
    The worst surprising thing connected with RA is the peripheral Neuropathy that developed in both of my feet and lower legs. The stabbing, intense pain associated with it is 24 hours a day and never-ending.

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    • June 25, 2011 at 1:36 am
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      I had a few bouts of iritis before and sometime early in my RA diagnosis. Not in many years now though.

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      • June 25, 2011 at 1:46 am
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        Stabbing pains in my right big toe for years before some kind of deep seated cyst formed on the bottom of the big toe. The stabbing pains were usually only at night and only continue for several minutes, for several days or weeks in a row, then go away for a while.

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    • June 25, 2011 at 6:04 am
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      Hi Alicia,

      I get lumps and bumps but they’re nodules. The one you describe at the back of your knee sounds like a ‘bakers cyst’, I have them too. They come and go. Apparently they’re quite common. Mine were spotted the first time I had a flare-up and had an ultrasound on my knees. It took quite a while to diagnose the RA but the bakers cyst were clear on the ultrasound. My dad also had them, but never had RA so i think it’s something the RA contributes to but is probably somethin I had a predisposition for regardless of the RA.

      I find that I can massage mine down a little to force the fluid out of the pocket that it has settled in. Could be just my imagination that it goes down, but it feels better anyway!

      Bunions and corns are also the result of the RA but they’re not exclusive to RA. Yest I’ve got both and my grandmother did too, also she didn’t ever had RA.

      Somtimes I feel like I inherited my whole family’s ailments – all bundled up with the RA. Fan-bloody-tastic!

      I just hope I haven’t passed too much of it onto my kids!

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    • June 26, 2011 at 1:25 pm
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      My daughter used to get the hives. She’s never been a big “sweller”. That’s part of why we never thought of JRA. I have a ton of allergies, and her “hives” would pop up when she was playing outside. It all made perfect sense.

      My girl doesn’t have any eye involvement, but many of the other kids do. Most of them develop uveitis, though. I don’t think I’ve heard of anyone with iritis. We all still worry about it just the same.

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    • June 26, 2011 at 4:58 pm
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      The nodules could be rheumatoid nodules and are not uncommon with undertreated RA.

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    • June 27, 2011 at 9:53 pm
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      Hi Alicia – I have several nodules or cysts, as well. The biggest is the one at the base of my big toe on my right foot. It was painful for a while, I think just because that joint was flaring. After that died down, it hasn’t hurt since (assuming I wear the appropriate shoes!) – my rhumy actually thought it might be a fluid-filled cyst and try to drain it – to no avail. Then I have about 5 on various fingers – all on the top or middle joints, though. They just pop up randomly…I think I got 3 in a matter of weeks. Now I just say I have monster hands 🙂 I know I have some cysts that I think come and go in my wrists, too, and can cause flares there.

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      • July 15, 2011 at 4:37 pm
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        Just for a laugh about your ‘monster hands’ – mine are pretty scary, but my grandkids think they are hilarious because they make really ‘scary’ spiders when I ‘crawl’ my fingers towards them like a spider attacking and retreating – haha

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  • June 24, 2011 at 12:23 pm
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    Raynaud’s phenomenon is one of the strangest symptoms, among many others (too numerous to list). It’s miserable & is so hard to get my hands & feet back to normal after an episode of Raynaud’s, which happens daily in winter. My RA & cold weather do not agree. Fortunately the Lord has blessed me with a very warm spring, and the grace & tolerance to get through this with His help. Sometimes I think my condition is a reminder to lean fully on Him, in every situation – not just illness – because I could not do this alone.

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    • June 26, 2011 at 2:57 pm
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      Kate: I can sympathize with you about the Raynaud’s. Raynaud’s plagues me daily, and there are times when I think it is worse than the RA. My hands and feet are almost never warm, and you should see the colors they turn! I found a product called Wristies that has been very helpful to me. They are fingerless gloves that come in many colors, and I wear them at work. They even come with a pouch inside where you can place a hand warmer. I get alot of funny stares at work, but my regular colleagues all know why I wear them. Most other people think it has something to do with carpal tunnel. The Raynaud’s foundation has a coupon code for wristies on their website, along with a link to the site. Stay warm 🙂

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      • June 27, 2011 at 10:56 pm
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        I’ve had Raynaud’s for as long as I can remember, but didn’t know there was a connection to RA until recently. I actually grew up for a long time thinking that Raynaud’s phenomenon was normal: my fingers are cold, of course they’re white. It wasn’t until high school that my mom finally noticed, freaked out, and forced me to see a doctor who gave a name to it. This winter, I feel like my symptoms got worse – it doesn’t take as much to trigger it anymore. And now, I get purple added to the whiteness. Joy. 🙂 Thanks for the tips, though, Marie! Right now it’s more of an annoyance than anything, but I appreciate hearing what people do to help, in case mine gets worse!

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        • June 30, 2011 at 3:55 pm
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          Dana:

          I also grew up thinking that “Raynauds was normal”. I thought it was normal for everyone to have hands and feet (even nose and lips) that turned blue, purple, red and white at the slightest hint of cold or when holding a cold glass. I thought it was normal for the fingers to have extreme pain in response to cold! I didn’t find out that this was abnormal until I was 37!

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      • July 2, 2011 at 5:33 pm
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        I have also had Raynaud’s but haven’t for some time now. When it did occur it was usually after a long day at work when I was overtired and also hadn’t had enough to eat or drink during the day. I noticed I could help ease the symptoms by making sure I took care of myself better and quit working a little earlier before I wore myself out.

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    • July 7, 2011 at 12:51 pm
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      Kate, in the past year my RA has deteriorated rapidly. Or, rather, it has increased and my body has deteriorated. I am single, live alone. My colleagues, the parents of my students, and people from church (I live over an hour from my family) have come around me with meals, cleaning, etc. As I was crying out to God to make it all stop, He showed me that these people are really God loving me — literally the hands and feet of Christ. I know that I am closer to God because of the RA. On good days I truly thank God for this. On bad days I simply curl up in a ball and let Him carry me. Amen to your post!

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  • June 24, 2011 at 12:36 pm
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    They usually only flare up at night. (Not sure why?) Although one time I did still have one when I was at my general doctor. She said she couldn’t feel it. (So I was like great…you think I am making this up.) I also told my rheumy but at the time there was no swelling & he just looked puzzled & said it didn’t have anything to do with my RA. The lumps are not totally hard meaning I can push on them and the skin feels incredibly pulled taunt and very sore to the touch. Then when they are gone…my head feels fine. I have never had anything like this before RA.

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  • June 24, 2011 at 12:43 pm
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    Hives all over several times before diagnosis. The doc would ask what I had gotten into…insisted I had to have injested something. Since I’ve had the severe itching palm thing generally when I first get up. I also had the carpal tunnel release before diagnosis of RA. If I shake my head it sounds like a wind storm. Fatigue..of course I was put on anti-depressents 30 years before diagnosis…so go figure which came first the little old chicken depression or the RA egg. Sero-negative diagnosed year and a half. Also have a daughter who has hyper thyroidism and scleraderma and my oldest daughter is battling some type of auto-immune problem both battle fatigue and are teachers. Thanks Kelly for RAW.

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    • June 25, 2011 at 9:36 am
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      Forgot about dry eyes, dry mouth, excessive sweating day and night, migraines. So many little things add up to misery.

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  • June 24, 2011 at 3:09 pm
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    I have a lot of the strange symptoms everyone is describing, but also when I put lotion on my legs it hurts. Pedicures are difficult because they don’t understand what the pain is. Also, sometimes I will have a spot – might be on my face, arm leg… that hurts to the touch a burning sensation and then it may go away in a day sometimes it hangs around for a few days.

    Has anyone else had this?

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    • June 25, 2011 at 1:52 am
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      Sometimes when a joint or area is in a real flare, the skin does “burn” when you touch it or lightly rub it or gently squeeze it. Had that mainly in my hands and wrists. Not on the face though. Was yours near the jaw? I’ve had twice a swollen area on the jaw just in front of an ear, and then hard time chewing or opening mouth hurts. But by the time get to a dentist, it’s gone. Maybe it was RA, or periodontal.

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  • June 24, 2011 at 3:10 pm
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    I have a number of nodules on the underside of my tongue on both sides. They used to be rather swollen, full of an orangey fluid, and very soar. They have subsided quite a but in the last year or so.
    My Rheumy was totally baffled and sent me to an oral surgeon who biopsied them.
    The lab man recognized that they were RA lumps and said it was extremely rare and that there were only 2 recorded cases.
    Anyone else have them?

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    • June 24, 2011 at 3:33 pm
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      Wow, I guess a postive for me if had them would be that I would be able to loose 10 pounds.

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  • June 24, 2011 at 3:37 pm
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    Sometimes (alot) I feel like I am being stung by a bee! That really sharp pain…I get this all over my body,different places and all different times day and night. Electrical shocks in my elbows and ankles sometimes hips. I also have bright red palms (looks like chop meat)and have had a flaming red chest that looks like sunburn. I have asked Dr.s about it and none can explain it( this doesn’t go away). At times different parts of my body turn red and looks like a sun burn but thank god not as flaming as my chest! I think I have covered the strange symptoms because we all know the others. It is interesting to read so many different things and I glad it’s not just me (sorry) but sometimes I honestly think I am losing my mind!

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  • June 24, 2011 at 4:13 pm
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    Kelly, I have seen (and heck, been) some of those people with those types of symptoms, so you’re not alone…by the way, have you done any research on effective supplements for RA?

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  • June 24, 2011 at 4:22 pm
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    hi ….
    Weirdest thing…I just had a terrible flair and was experiencing extreme temp changes…My temp would go from 96 to 100 and back again with in minutes. I would feel like I was on fire…and then begin to shake with chills…But I also noticed my skin has been bright red…I couldn’t figure it out; haven’t been in the sun. This explains it!

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  • June 24, 2011 at 4:29 pm
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    Lora,
    How do you buy the biotin? Looked it up, can be vit h or b7. Have had a lot of hair loss from mtx and arava…taking sweet time to grow back. Took to wearing a wig…I am self conscience…finally got it cut in a way to hide bald spots, but when the wind blows…oh boy!! : )

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  • June 24, 2011 at 4:42 pm
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    My short term memory and problem solving skills are SHOT!!! The daily fevers and shooting nerve pain are 2 other issues that impact me.

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    • July 4, 2011 at 11:31 pm
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      Me too with the short term memory loss and inability to focus. I always say I’m having a senior moment even though I am only 37! I often have a hard time thinking of a specific word or articulating a thought to someone. Highly frustrating!

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      • July 16, 2011 at 12:09 am
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        I to have the short term memory loss and I often will lose the ability to focus on whatever I’m doing.. I work in a factory doing the same job for 8-10 hours.. sometime during the day I will totally forget how to do what I have been doing all day. When I was first diagnosed with RA and OA, my doctor said it was because I was in so much pain that my brain could not think of anything else. Now that my meds have somewhat controlled the flares/pain, I wonder if that was totally all of it or does RA affect the portion of the brain that handles short term memory and focus ability.

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  • June 24, 2011 at 4:47 pm
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    Whenever I have a flare that affects most of my body, I get a lump behind my right ear that is hard as a rock and extremely tender. I told my Primary and the rheumy at the time, but neither would touch or look at it. This and the next symptoms I mention strted before I was dignosed or treated. The rheumy finally said, quite casually, “it’s an FM lump.” Oddly, I have never found anything about that, and I still get that swelling during an RA flare.
    The other strange symptoms are an extremely itchy rash on the soles of my feet that did not respond to any creams, and took a year to disappear. The skin doctor said it is common in people who have a lot of pain…no one else has ever accepted that answer. There was no fungus or anything else that showed up on tests. A few years later I began getting the sharp electric plunges, like knives, in the feet and joints of both hands. A shower of sparks or electric shocks over my hands, back, both feet, that at first I thought was ‘itching’,but was really ‘tingling. There is nothing outwardly showing. I know, in the joints it can signal nerve damage or involvement, but no one is acknowledging that either.It is worse witn interstitchial edema too…when that improves, so does the tingling sensation, at least in feet and legs.
    Laryngitis, and hoarseness is a constant companion now
    Pitting and horizontal, as well as vertical nail ridges, that the docs just blow off…I am also hypothyroid, and that can cause some of the nail problems. I bruise very easily, and that is excused by the fact that I take aspirin as preventive therapy; IBS has improved now, but the constant bloating is a problem, requiring 3 clothes sizes in the closet at all times…:-)
    Severe shoulder pain on one side was brushed off by one rheumy as OA and another as bursitis.(I had that shoulder girdle displaced by a poorly done mammogram a few years ago but I guess they cannot accept that explanation. By the way, I fixed the pain after my visit with the old tennis ball trick against the wall…it has been pain free for a week now.

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  • June 24, 2011 at 5:46 pm
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    My other strange symptoms include a rash on my torso with splotches of it up my neck and on my chest. It’s kind of a dark peach color and never goes away. It doesn’t itch, but stings a little when I sweat (which is often). I find days when I go outside in the 80 degree heat and get goose bumps, then come back into my cool apartment, where I sweat horribly. Go figure huh? makes NO sense. My palms are bright red all the time (sometimes redder than others) and have darker red spots on the meatier parts. It looks like I’m actually wearing RED gloves, as my skin is very white. I get a flaky, scaly patch on the very center of my palms when I have my hands in water too long. I have several spots on my body (one on my back right side over the ribs), where it itches but HURTS to even touch…feels severely bruised, but there is no visible mark. I also get the electric shocks all over, with SHARP pains that only last seconds but take the breath away.
    Those are the ones I can think of at the moment…I just really believe that our medical establishment has barely reached the tip of the iceberg with RA symptoms. They all say “oh that’s not RA”, but how do they know? Just because the “normal symptoms” are pretty consistent, so are a lot of the “odd” symptoms we’ve all talked about here! They need to open their minds about additional symptoms!! IMO lol.

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  • June 24, 2011 at 8:01 pm
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    cold sweats, and sore rib cage is some of my strange things in a flare

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  • June 24, 2011 at 11:05 pm
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    I have to agree with your mention of swollen lymph nodes Kelly – mine is isolated to my neck – I would think I’m going to come down with strep throat – but don’t – after all I work in urgent care as an NP….

    I check my “sore neck” and feel the swollen glands – check throat – nothing!!! frustrating!! then they’re not sore, they are, and so on and so on….oh well, if they STAY that way – then I’ll work – just can’t figure out why they go down as quick as they enlarge!!! :/

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  • June 24, 2011 at 11:30 pm
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    I’ve been diagnosed with RA since 2005. I wish I’d been checked for auto immune hypothyroidism too sooner. About 8 months ago I found out about the hypothyroidism. It causes major hair loss, exhaustion, joint flares, super dry skin…..etc. I think I’ve been suffering from it for a long time it just had to get bad enough to separate it from my RA symptoms. would recommend anyone with RA get their thyroid hormone checked. Takes awhile to get the meds right but my hair isn’t falling out and no fllareups since starting on the meds. My doc said once you have one autoimmune disease you’re more inclined to have others.
    I’m having all the same dry/blured eye issues as everyone else too.

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  • June 25, 2011 at 12:34 am
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    UNTIL I SAW THIS POST, I THOUGHT WHAT I HAVE BEEN EXPERIENCING WAS IN MY HEAD AND I KNEW MY RHEUMY WOULD ROLL HIS EYES AT ME IF I ASKED ABOUT IT……I HAVE A CONSTANT TICKLE/COUGH AND DRY THROAT. I HAVE TRIED EVERYTHING THINKING IT WAS ALLERGIES OR A COLD.
    SOMETIMES I COUGH SO HARD THAT I CHOKE. DRINKING FLUIDS DOES HELP ONLY IF I CONTINUE TO DRINK. NOT A SIP OR A SWALLOW WILL HELP. LIKE A WHOLE BOTTLE OF WATER. I DO NOTICE IF I EAT AND DRINK IT TAKES THE TICKLE AWAY FOR A WHILE. IT IS ESPECIALLY BAD WHEN I LAY DOWN. I SPRAY MY MOUTH WITH ‘DRY MOUTH’ SPRAY, GARGLE, SUCK ON CANDIES AND CHEW GUM. EVENTUALLY THE COUGH COMES BACK.
    I AM ON METHO. AND THOUGHT MAYBE THAT COULD BE THE CAUSE. I KNOW MY DR. IS GOING TO MAKE ME FEEL FOOLISH FOR ASKING, BUT I AM GOING TO ASK ABOUT THE COUGH JUST FOR GRINS AND GIGGLES.

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  • June 25, 2011 at 2:02 am
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    I have had lots of the symptoms others are describing. My latest ones are fevers, feeling hot, sweating, and looking flushed. I think I am a little young for hot flashes (I’m 38). I also have had swollen, painful lumps on the back of my head. One of the worst things for me lately is numbness, tingling,and shooting pains like electrical shocks in my hands and forearms. My doctor said this is due to the swelling hitting nerves. She does steroid injections in my wrists and those help some. Lidoderm patches (I cut them up and put them on the backs of my hands and wrap them around my arms just past my wrists) also help. I have had hair loss twice over the years- with Arava and Orencia, luckily it comes back when I change meds. I could go on and on… Thanks for the article Kelly!

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    • July 4, 2011 at 11:40 pm
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      Okay, weird, my name is Dawn and I’m 37!! With RA too of course!

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  • June 25, 2011 at 2:49 am
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    Great post Kelly.

    I was diagnosed in Spring of 2010 but starting in 1996 I had carpal tunnel surgery in both hands. I also remember having terrible foot pain, I used to work logging and thought that I just wasn’t fit enough but I realize now that that level of pain wasn’t normal. Go forward to 2003 and I started getting intermittent swelling in the glands in my neck. They were sometimes painful and came and went. In 2006 I can add getting periods of severe aching in my leg muscles, especially my left. Then I started getting what the doc called eczema but it was unusual places like my eyelids and a splotch on the side of my forehead. I was still getting swollen glands and aching leg muscles. Then I started getting small hives, just one or a few, usually on my arms. (Eventually, years later I noticed that the hives preceded flare activity.) The one other pre RA thing that happened to me was full and complete menopause. I am post menopause at the ripe old age of 45. I started getting hot flashes in my late 30’s. I have been tested by my endocrine doc and it’s officially finished. She said menopause that early can be a sign of autoimmune issues.

    So now here I am with sero positive RA. My latest weirdness is an constantly elevated Aldolase test and still the achy crampy left leg thing. Also in my left leg the muscles feel like they flutter deep inside and often it feels like my foot has a guitar string that is being strummed. Rheumy doc sent me to Neuro doc and did emg and nc tests but all is normal range. No one knows, they think maybe myositis except I don’t have major weakness. Guess we’ll wait and see. Thanks again Kelly for this post, it’s the kind that makes me want to read EVERYONE’S reply! Very cool…you’re awesome!

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    • June 26, 2011 at 1:56 pm
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      Your eczema sounds a lot like psoriasis to me. My son had his on the eyelid once. Oh, how that freaked me out!

      I wish I knew about the adult versions of these diseases, but I don’t. What I do know is that with juvenile forms of myositis, many kids seem to get symptoms other than the severe weakness first. Something like 98% of affected kids have DM instead of PM. Many of those only have the rash symptoms & mild muscle issues, while others only have just some rash. Some kids have those symptoms for a year or 2 then BAM! Out of nowhere, the muscle issues pop up.

      After months of stiffness, pain, nodules, and elevated liver enzymes, my daughter was diagnosed with JA in January of 2008. In April, after Raynaud’s showed up and our old rheumy thought he saw Scleroderma, he ran an ANA. It was high titer speckled… characteristic of MCTD. He did not run an RNP to check for MCTD. In October 2010, she developed a full-blown case of DM. Looking back, she’d had symptoms from at least that spring, but I suspect that she’s had myositis features from the MCTD since before diagnosis. I’ve learned that some drugs can help push back the severity. The main ones are MTX, steroids, Enbrel & Remicade. If you are on those, it may be helping more than you know. The only way they’ll know for sure is with muscle biopsy or MRI combined with labs. Good luck! I hope it isn’t but if it is, don’t lose hope!

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    • June 26, 2011 at 2:24 pm
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      I also really appreciate this. I think this is such a fantastic idea! From a parent’s perspective, it’s difficult to know what my child is feeling sometimes. These types of posts help a LOT! On my JA boards, we’ve established some patterns. It’s not quite the same because we have to figure out what our kids mean when they say “I have a squiggly pain”, or things of that nature. Many kids won’t admit to pain. My daughter also gets the shocks. She can’t really explain it any better than that, though. She gets chest pain. I thought it was chostrocondritis, but I’m not sure. Other kids have been crying in pain and taken to the E.R. She just quietly watches TV. She has had a lot of gastro issues.

      A few things that may help- She has Raynaud’s. When we were still with her old doc (who wouldn’t treat it!) she used to get the hard, painful bumps. They mostly popped up on her hands and feet, associated with Raynaud’s. I found out from our JA Conference MCTD roundtable last year that they are called Lupus Pernio. She also used to get big bumps that looked like spider bites; also hard and painful, they would appear on her arms symmetrically up and down. Naproxen gave her crazy rashes, too, so it was hard to figure out at first what caused what. Prednisone does cause her to heat up a lot more. Myositis does, too. Bright side? We haven’t seen a Raynaud’s flare in a while. :/

      Reply
  • June 25, 2011 at 2:59 am
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    I get swelling and pain along the left side of my face and neck. Swollen lymph nodes, raw patches on my gums, and pain and tenderness in my eye. It seems to coincide with flares.

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  • June 25, 2011 at 6:15 am
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    Before RA, I would get this weird feeling like string was wrapped around my toes. I couldn’t get that sensation outta my head for a while. I get a lot of cramps in my toes and feet if I walk to much, that even prescription potassium, magnesium etc does NOT touch. I have ear problems, one ear feels like its not working as well as the other, like the drum is stiffer. I would have like a water filled sound in my ear before I went on my ra meds. And I had bad rib pain on the side of my chest (not the mediastium, like costochondritis) for a couple of years, but went away with all the prednisone. I still get really bad cramping in my lower legs and toes and forearms and fingers. Bananas do not help, sorry. Actually, the prednisone gets rid of the cramps.

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  • June 25, 2011 at 7:57 am
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    Occasional fiery, red palms – but always at least mildly red palms; pinpoint rash on torso; red knuckles; pain in one or two ribs and other bone pain (maybe MTX?); red/purple spots on arms and legs that come and go; sudden, fleeting joint pain; swollen lymph nodes in neck; hoarseness; fevers several times a week; shaking chills; brain fog; severe fatigue but my rheum dr says it is NOT caused by RA – says it must be depression; also muscle pain, particularly upper arms – but rheum says it’s not RA, and it’s also not typical of fibro; tendonitis – both elbows; burning in hands and feet; burning eyes

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    • June 25, 2011 at 9:35 am
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      Hi Terri, I’m not a doctor of course, but most of your list (pasting it here) “sudden, fleeting joint pain; swollen lymph nodes in neck; hoarseness; fevers several times a week; shaking chills; brain fog; severe fatigue but my rheum dr says it is NOT caused by RA” – all sound like RA symptoms to me, listed in various materials about RA and what we hear reported by patients here. Muscle pain and tendonitis are also a classic RA symptoms and only recently do some rheum docs tend to call it fibro. I hear “burning hands and burning eyes” from RA patients every day. The eyes are probably dry, which is common with RA (called secondary Sjogren’s).

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  • June 25, 2011 at 8:12 am
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    I can sympathize with this one. My mom has the same itching and has been told that it is over active nerves (she doesn’t have RA, but has had this for years). I had it before becoming diagnosed on my arms from my shoulders to my fingers. Now sometimes it shows up in my legs. I used to attribute it to eating or taking in too many acids or caffeine as it used to happen when I drank too much coffee or had to many cokes in a day. For the past month I have been suffering with it in my shoulders and hands. The only relief comes from ice packs and benedryl in creme or pill form. Sometimes I use a menthol creme to help, but have to be careful as recently this started to cause swelling after the creme wears off kind of like a rebound effect.

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  • June 25, 2011 at 10:32 am
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    Sharon and Kelly- I’m so relieved to hear someone else has felt this. Of course, we still don’t have an ‘answer’, but I get these ‘shocks’ too. It is tough to explain where they are–but I think they feel like it goes through my head/face/brain and down. They don’t normally go any lower than my head, but sometimes I think I can feel it into the arms or chest. I haven’t had them in a few weeks.
    I’ve started to say that these happen when I’m feeling ‘sick’, and so I’ve labeled them to what ‘malaise'(sp?) or general feeling of ill is like. (i think that is one of the webmd symptoms for RA)
    And Sharon- I just figured out what trigger finger is and I’m pretty sure I have that too. My hands get ‘mechanical’ and open and close like a robot or something. I thought it was cool for awhile, but I now realize this might be the beginning of locking fingers, etc. Not so cool anymore!

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  • June 25, 2011 at 3:49 pm
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    This is a great topic Kelly. I’ve been avidly reading everyone’s contribution. Thank you so much for all that you do!

    The symptoms I worry most about are muscle involvement. My upper spine will swell, especially around C7. It radiates pain into my back muscles, across the shoulder blades, and into my shoulder joints. Sometimes the muscles will knot up. Ice, ibuprofen, massage, and cyclobenzaprine (a muscle relaxer) help alleviate the worst of the discomfort and pain, but sometimes I wonder if this is part of the RA or something else entirely. Also, my rib cage is very tender on the sides, and sometimes my ribs will swell up and become very painful.

    I too experience the “shocks”. Since I’ve been taking prednisone, I don’t itch as much though. I still run a fever when I’m flaring, and occasionally experience sore throat/swollen lymph nodes.

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    • June 26, 2011 at 1:04 am
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      lady red.

      I’m also on a the message boards for spondylits.org. Some of your symptoms mimic what could be ankylosing spondylitis. Have you had your HLA B27 gene tested? I know RA and AS are similar (i have the gene and we don’t know). Thankfully, our medications are the same. Anyway, it was the lung symptoms that made me wonder about the AS. And woo, the C7 disc– I hope the flares decrease. Neck pain stinks! (i have an artificial disc in C5/6)

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      • June 27, 2011 at 1:29 pm
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        Thanks for the insight Deven! I’ll ask the doc about AS at my next appointment. I do have neck pain and my neck is VERY stiff; to look over my shoulder, I have to rotate my upper body.

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    • June 26, 2011 at 2:08 am
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      I’ve had tenderness in the rib cage, mostly sides/back for years. Sometimes worse than others, but usually some level of tenderness with light pressure.

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      • June 27, 2011 at 1:31 pm
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        Chelsea, thanks for commenting. It’s nice to know I’m not alone with this weird symptom.

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  • June 25, 2011 at 6:22 pm
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    Thank you to everyone out there posting! This has been very helpful and a great mental exercise to read through what others are going through. Thank you for commiserating and questioning so openly.
    Strange symptoms, most have been written here. Although the one I continually struggle with is the severe chills. They come on at the most odd times and several times when I have been with friends. They literally shake my body from head to toe and I sometimes can’t walk afterwards. It feels like my bones are freezing from the inside out. Not long after to be followed with heavy sweating which will continue throughout the rest of the day and into the night. I’ve had the electrical shocks as well in fact the first ones were when I was first diagnosed and my little finger on my right hand has a permanent arch in it due to that. I’ve had others recently in my shoulders and down my back for several months. I dread to see what will shorten up or tighten up as time goes. So far so good, but then the pain is not gone yet. I still can’t kick a ball without causing a cascade of sparks through out my feet, legs, and up to my hips. A medical professional that I know explained some of it to me in this fashion: “Your bone marrow is a great production unit of the body and when it swells or gets infected of sorts it effects not just your bones, but your nervous system as well in what can be some very strange ways that not many of us can explain.” He is a sports medicine doc and has helped me with several issues over the past couple of years. But I hold onto these little tid bits as much as possible hoping that they will help some of the puzzle pieces begin to fit in this RA puzzle.:-)

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  • June 25, 2011 at 9:05 pm
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    – Burning palms of hands. Like I just pressed my hands on a hot burner!

    – Buzzing nerves in bottom of the feet

    – Foggy mind/ trouble with words or concentrating

    – mouth sores that come and then go away an hour later

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  • June 26, 2011 at 4:12 am
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    First of all, I would like to thank you all for writing in and sharing. I also have had many of the aforementioned symptons over the years. The one that I am writing about is what I call a dead spot. This is on my left leg below my knee. It is an area that is the size of a small desert plate that simply feels dead. Always. It is like there are no nerves, bloodflow, or muscles. My Rheumy has simply discounted this along with any of the other symptons I have encountered along the way. She is interested in hands and feet only although she did remark on my full body rash the last time I saw her. Again thanks to Kelly and all the rest of you. It’s nice not to feel so all alone.

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  • June 26, 2011 at 4:05 pm
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    How about burning face? I’ve been recently diagnosed with seronegative RA and Fibro and negative on Lupus. So every once in a while I FLASH BURN across my cheeks and they turn bright red. I bought a cold gel mask to turn down the heat. It hangs around for 15 – 30 mins then just disappears. This began before any medication, has been occuring for about 2 years. Very painful and totally unpredictable – I don’t have to be doing anything to trigger it. I am of menopausal age but I have no other tell-tale signs. Period still arrives like clockwork, nothing unusual in flow, no body hot flashes, etc. But I do have the achy joints, gel effects, and electric/shocky pains and have for a long time. Yesterday was a bear. I call it ‘turning to stone’. Nobody understands …. This illness sucks.

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  • June 26, 2011 at 5:04 pm
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    My strangest symptom is abnormal mammograms. I have rheumatoid vasculitis as part of my RA and I show symmetrical microcalcifications in both breasts as a result of capillary damage caused by vasculitis flares.

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  • June 26, 2011 at 5:54 pm
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    This was a great question, I have just been diagnosed RA, but also have some weird symptoms that didn’t match anything I read so far… I have a swollen tonsil on one side that seems to come and go (anti inflams reduce it) and get a sticky trigger finger. Dry eyes are also a problem.

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  • June 26, 2011 at 7:48 pm
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    Some of my “strange” symptoms that I suspect might be RA related have been
    1. Popping sensation or fullness in my ears
    2. Raspy voice
    3. Raspy breathing
    4. Rash on arms, back of hands, and chest

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  • June 26, 2011 at 8:02 pm
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    As I was reading other posts I realized that I have had many of the same strange symptoms many have stated. I have had swelling in the glands of my neck since I was a teenager. I always attributed it to other things. I have healthy eyes that ache and tire easily. But something I haven’t noticed in the posts I’ve read so far is that my RA seems to be attacking the tendons of my hands, feet, knees, shoulders, neck, etc… as much or more than the joints. The joints are involved, but it hurts to open my hands (etc…) when having a flare because my tendons feel “shortened”…like they will snap if I open my fingers too far.

    Reply

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