Do You Have Strange RA Symptoms? | Rheumatoid Arthritis Warrior

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.

Recommended reading

Kelly O'Neill

Kelly O'Neill (formerly Kelly Young) has worked about 12 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over fourteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

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331 thoughts on “Do You Have Strange RA Symptoms?

  • December 14, 2015 at 10:48 am
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    Hi everyone. I can’t be lot hers have the same strange symptoms as me. I have lost toe nails spontaneously, fevers, I’m cold one minute and setting the next. Vertical lines in my nails, skins is so dry it flakes on my entire body, eye sight is worse. Hive like rash appears when I’m to cold and or stressed. The rash stopped when I put on Plaquinal. My feet, legs and hands swell. I have already had my right hip replaced. My voice comes and goes. The newest thing is sharp electrical shocks that flow up from my lower back into my neck that literally stop me from moving and is extremely painful. I have had nerve conduction tests done. With horrible results and alot of nerve damage. My leg that has the artificial hip constantly has severe pins and needles.

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  • February 10, 2016 at 6:32 am
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    Got a story for you guys, see if you can help me out. I was diagnosis with RA in 2014.well Sat. I started to itch bad on my inner thighs well my thumb and big toe started to swell and itch as well wake up Sunday my toe is so big from being swollen that it moved to the toe next it, the same as my thumb to finger. Now they all itch so bad like u said like a hundred of bees just stinging. I have some sharp tweezers that I have been using to itch and I mean none stop itching till I’m bleeding now its moved to my butt right where the crack starts from the tops. Sat to today I have done nothing but itch. I out of my mind going crazy because I can’t stop itching. U know how u itch at something it feels so good and hurts at the same time well that is me, I have no idea what is going on. I have not taken my meds in over 4 months due to them making me so sick. I did take my predisone sat till now to see if it will make it go away and so far nothing . I just don’t know what to do. My thighs are huge now in welps from just itching can barely walk due to it. Fingers are triple in size from just swellen and itching that I can hardly bend them. I have not tried benadryl yet will do that today. But have tried alit over the counter itching creams and nothing so far. Shoot I’ve even tried lidacane and nothing. Now I have put a wet rag in the freezer and then put that on my itchy fingers it did give some relief till I had to take it off then back to itchig I went lol but now it’s gotten hard to do that now that all my fingers are swollen and itching. What to do, what to do . I have officially given up. 🙁

    Reply
  • April 7, 2016 at 1:24 am
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    I am reading thru these bc of a rash on my chest & forearms, but came across the feet flaking/peeling. What IS that? Mine have done it since I was little. They turn white then peel or flake off on the soles. I have never known anyone else to have that so you can imagine I’m feeling not so alone at the moment!!! And Fred, I know it’s been a long time since your question, but I have itching fits with my hands & feet too. I have been told it’s part of RA &/or Lupus. (I have both.)

    Anyway, anyone figure out the foot flaky thing??

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  • April 7, 2016 at 1:40 am
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    Oh wow Yvonne you describe my whole life lately. Down to the thrush even. What gastro symptoms are you having? I wish I could get these bruises completely gone. Been taking iron…not doing much yet.

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  • April 7, 2016 at 1:59 am
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    I am 34 & have been having major sweating, drenching fun, as well as the flushing hotness….I’m not premenopausal. However I have RA & Lupus & I hear the sweats are part of the Lupus. Hope this helps!

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  • April 18, 2016 at 1:10 pm
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    I get shocks and zaps on my back for years! Have gone through the gamut of ra drugs and am now on Cimzia only. None of drugs alleviated the shocks.

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  • June 22, 2016 at 6:38 pm
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    I get migraines with vomiting every couple of months and sometimes food poisoning like symptoms without the migraine; frequent rashes on my chest ; dry eyes and trouble reading small print; hoarse voice; sometimes night sweats or day time flushing and sweating with very little activity; three wonky crooked fingers (boutonniere deformities) and hammertoes on all toes except the big ones. Big sigh.

    Reply
  • August 20, 2016 at 12:10 pm
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    I have been getting sharp ear pain especially on my left side where my inspiratory chest pain {recurrent RA Pleurisy} so odd. I frequently have chills and fever with a flare probably 90%

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  • September 7, 2016 at 6:33 pm
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    Itchy hands. Oh my gosh. Drives me crazy. Also itchy legs, Back and head especially at night.

    Reply
    • September 20, 2016 at 4:18 pm
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      Sherri, this might be a side effect of a med if you’re on meds for the RD. I had this side effect from Actemra.

      Reply
  • November 6, 2016 at 2:57 am
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    Reply
  • December 14, 2016 at 9:33 am
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    I have some strange symptoms too. This all started because of joint stiffness and hives. I mean hives all over, different body parts, multiple times per day. It became so bad that I didn’t want to wear clothes. I was diagnosed with chronic urticaria and dermatagraphism. Which is really fun because if you would take just the slightest pressure say from a fingernail and write on my skin….within 10 minutes what was written would turn to hives and stay there so I could be read like a book. I felt like a circus act. How depressing!
    But my most strange symptom has to be the weird noises in my neck/head. It’s not cracking, it’s not popping. It’s a sound of krinkling plastic followed by liquid noise. I can only assume it’s spinal fluid or what is left of the discs in my neck compressing. I have no clue. I get the electric shock things too. Plus I have PCOS, high blood pressure, Lyme, & sleep apnea ontop of the RA and chronic hives. Please if anyone has multiple diseases or illnesses like me, please, let me know how you deal with it all! I’m having a tough time keeping it together!

    Reply
  • March 7, 2017 at 7:42 pm
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    I am 24 and experienced eczema for the first time a year ago. This year it showed up all over my chest, under my arms, and up my wrist. I’ve been hiding in high-neck sweaters and long sleeves. I’m only a fourth of the way through foderma serum and it’s almost completely cleared up and I could not be happier!

    Reply
  • April 11, 2017 at 6:35 pm
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    I am posting on behalf of my wife, Vickie. She has psoriatic arthritis and has been on enbrel for three years. She had very few side effects related to the injections of enbrel and stopped the medication a few months ago when she went on Medicare and the cost of the injectable went from $150per month to $1600 per month. She chose to go without medication and after three months hard lumps began forming in the area of her right calf. Dr. Said it was possibly an immune system problem. A month later Vickie decided to try Remicade Infusions as the psoriasis began to worsen and she is now having mild reaction to the Remicade after 2, startup infusions.
    Wondering if any others have expeienced these lumps in the legs and wanting to know if they eventually go away? Also need assistance from those that have had any similar symptoms to let us know which of the drugs available for Psoriatic Arthritis are least problematic and if anyone has found a more homeopathic solution which would allow her to get off all of these drugs?
    Thanks in advance for any suggestions or information.

    Reply
  • July 26, 2017 at 8:17 pm
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    Diagnosed with RA when 29 after the birth of my first born, now almost 55. Has anyone ever had the experience of veins popping out on back of hand inflammation in upper arm, lower arm or wrist and feel broken, then it stays for a 3 to 4 days and switches to the other side. I had gone to several RA doctors about it. None seemed to understand what I was talking about I had even taken pictures of my hands showing the swollen veins popping out of my hand, they looked at me as if I were crazy… I also have a motor neuron disease that gives me a spastic gait low back pain and extremely stiff legs called HSP or Heritary Spastic paraplegia so it was difficult to know what disease was causing what. But the swollen veins and the broken joint feeling is a thing I went to the U of W and saw a Dr. that did my ultra sound on my hands, wrist that told me that it is a rare condition of RA. He even asked me did all the Drs. think you were nuts? I laughed and said yes, he said well your not. It took about three years to get an answer what was going on. Has this happened to anyone else. Was taking prednisone and other RA meds. to combat the flares now on Embrel and methotrexate.

    Reply
  • August 25, 2017 at 12:46 am
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    I am posting on behalf of my husband who was diagnosed with RA and ankolosin spololtis over 10 years ago, he is currently 35 years old.
    Today he seems to have a rash and/or hives all over his body – arms, legs, chest, buttocks, etc. (he gets rashes frequently, but this time seems to be extremely uncomfortable & more itchy than ever). Some have tiny whiteheads and other red spots have a brown color. He has also developed what look like scratches on his arms. There are also lumps on his legs.
    I stumbled upon this website while googling his syptoms in the hopes of finding a possible treatment to help alleviate this pain he is experiencing.
    I notice the dates on the comments are from very long ago, but hoping members are still active, and able to possibly find someone who has experienced this, and might know what this might be and any solution?
    I read some of the comments on here to him, and he can relate on mostly all of them. Battling RA is taking a toll on him, and makes him very depressed at times. He’s tired of dealing with doctors, etc as it’s become so exhausting. I personally do not suffer from this disease, but try my best to read up about it, and go to his rheumatologist appointments etc so I can understand better. I try my best not to have the mindset that he is just complaining to complain or get out of doing xyz. It must be absolute torture dealing with RA, along with doctors and friends not having any sympathy, automatically assuming over exaggerating.
    If anyone can provide any advice to his rash experiencing, it’s greatly appreciated.

    Reply
  • October 8, 2017 at 11:45 pm
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    I’m currently going through the process of testing for autoimmune diseases. My doctor is confident it is autoimmune, but my tests come back negative. Reading these comments have been eye opening. So, thank you.
    I’m currently having a flare up which started with shooting nerve pain in my fingers. It moved around though but mostly shots of pain up to my finger tips. To the point where I haven’t been able to use my hands. A couple weeks later it moved to my toes. They’ve become very sensitive to cold and shoot pain when they get the slight bit cold (no colour changes). A few days after the pain moved to my toes and my lymph nodes began to swell and hurt. Wide spread swelling of lymph nodes. I’m so tired. I can’t think clearly like I used to. I get odd rashes on my face that doesn’t clear with benedryl… But you would never know any of this was happening because I “look fine”.

    Reply
  • December 17, 2017 at 9:42 pm
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    Hi everyone. So I just got my RA diagnosis this year, I’m 21. I’ve had an increasing number of health issues and I’m wondering if any could be related to the RA. It started with light asthma at about 15 but by 19 it had gotten so bad that I was put on singulair, 3 inhalers, and had to take my nebulizer with me anytime I was going somewhere for more than a couple hours. I also developed severe allergies to basically everything that grows naturally here where I live as well as dust, mold, and animals, and I have to carry an epipen. I have sensitive stomach and basically just alternate between being constipated and having diarrhea (tmi…). I have also noticed within the last 8 to 12 months I’ve been getting acne almost like cysts in my underarms and on my inner thighs. I know some might not be related but I figure it can’t all be coincidence. Has anybody had these issues? Also I’m getting ready to start Humira. Has Humira helped anybody with these problems?

    Reply
  • January 15, 2018 at 7:16 pm
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    Hi, I’m 45 and live in the uk…
    After the birth of my last child my health plummeted….especially knee pain.
    For 12 years I have been back and forth to the doctors…no joy until today…
    I’m currently getting electric shock pains in my toes, very painful, and my knuckles have disappeared due to the fluid between them.
    I have pain in my…ankles, knees, toes, hands, hips, shins and back and EXTREME Fatigue…I also have a few small lumps, one on my upper arm, back of my leg, and my scalp. I also have bleparitis.
    Now the dr is sending me to a RA specialist….
    Do you guys think it could be RA, I’m new to all this
    Thanks 🙂

    Reply
    • January 31, 2018 at 5:41 pm
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      Lisa,
      It could be RA – with the symptoms you list. But either way, it’s definitely not normal to have so much pain and swelling at 45.
      Let us know what the doctor says. Good luck.

      Reply
  • February 1, 2018 at 11:37 am
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    For the past two weeks I have had terrible chest pain and back pain, which for lack of a better description, seems to be happening in the shape of my lungs. I began coughing, this dry, non productive cough about two weeks ago. My chest pain was so bad, that last Friday I went to the emergency room, as I have a history of heart disease, and thought I may be having a heart attack. Nothing showed up, nothing in the labs, nothing in the stress test, nothing. So it’s not my heart. That’s good, but in the mean time I’m suffering. My entire torso feels like it’s in a vise. I toss and turn over and over trying to get comfortable enough to sleep. My neck hurts. I’m exhausted and I’m depressed.
    I called my RA doctor and she sees me Wednesday morning, if I can stand it that long. When I asked the nurse if this could be a flare, she said it COULD be, but she didn’t sound convinced. Nothing is helping. I took my Enbrel and methotrexate Tuesday night. I take Meloxicam every night. I’ve taken Tylenol. Nothing has put a dent in it. My pain gets worse throughout the day, so by the time it’s time to go to bed I can hardly stand it. The only time I felt any relief was when I was given 30mg of IV Toradol Friday night while been kept overnight for observation in the chest pain unit. It made me comfortable enough to go to sleep.

    I am at my wits end. With nothing coming back positive I feel like I’m going nuts, but something is VERY wrong and I need help with it. Have any fellow warriors had symptoms like this.
    I have also had blurry vision off and on. I wear glasses and even with my glasses on, I’ve had trouble seeing. My eyes don’t hurt but I can’t see well, especially up close.
    I’m worn out, discouraged, and sad. I actually had a little bit of a breakdown last night. Lots of tears. I don’t usually do that. If anyone has any advice I’m listening.
    Thank you,
    Jennifer

    Reply
  • March 8, 2018 at 7:23 am
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    my skin peels of every day and shocks in the hand ,, some times i can not walk my legs just won’t do as i want , is this normal

    Reply
    • May 19, 2018 at 10:51 am
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      Shocks of pain anywhere in the body & body being uncooperative do not sound “normal” things, but things that do happen in RA / RD. Dry peely skin could also be either a side effect or low thyroid so you should check that.

      Reply
  • December 6, 2018 at 12:29 am
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    My “weird” symptoms have been autonomic nervous system dysfunction (POTS, hot flashes, sweating even in the cold, blood pooling in my legs and arms), tinnitus, rash over the tops of my hands (red hot, dry, eczema-like), red palms, splotchy skin, all the GI stuff (basically IBS/IBD symptoms along with a whole lot of nausea and villus atrophy and gastritis), and creepy-crawly muscle spasms (I think it may be Isaac’s syndrome but who knows)… It kinda seems like I have a mixture of symptoms that mirror Crohn’s and dysfunction in the potassium-ion channels (read: nerve symptoms, muscle spasms, weakness that comes and goes, numbness and tingling, electric shocks, icepick pains)… Some tendon involvement (the seem to swell). I haven’t talked to my rheumatologist about all of it but he seems pretty certain that the dysautonomia and muscle spasms aren’t RA related. I call bullshit… I’m pretty sure it’s all part of the way the RA effects me specifically.
    My father has RA too… It ignored his joints for the most part (he’s in his 60s, has no erosive changes, swears he doesn’t have joint pain (though I’ve seen the swelling in his hands)… Went right for his lungs. He was diagnosed when they were trying to figure out where his pulmonary fibrosis came from.

    AI diseases are weird. The concept of having to follow a certain course and only have certain co-occurances throws me for a loop at this point. Your blog has been a godsend in that respects.

    “Typical” is such a fallacy.

    Reply
  • September 2, 2020 at 9:44 am
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    I have chills without shivering and without a fever. I constantly feel like I am coming down with something, but I never do. I continue to search this symptom but have only found chills with a fever.

    Reply
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