A Paradigm Shift in Rheumatoid Arthritis Disease Activity? Part 1

low grade fever RA

What is Rheumatoid Arthritis disease activity?

People living with RA know it can affect them in unexpected ways that don’t involve joints. Just reading recent comments here, you can see people talking about these effects of RA:

  • Drastic weight loss
  • Frequent low-grade fevers
  • Ruined teeth from dry mouth or autoimmune activity
  • Heart or lung damage
  • Depression
  • Debilitating fatigue
  • Various eye problems

Speaking strictly of JOINTS

But even if we speak of joints ONLY, there’s a wide variety of symptoms. If joint exams are done, they are often done in the same ways, documenting only certain manifestations of the disease:

  • Significant swelling
  • Obvious deformity
  • Erosion of bone in joints

But patients describe JOINTS with

  • Sudden weakness
  • Enlargement of bones at joints
  • Tightness of skin attributable to swelling
  • Gradual drifting, twisting, or deforming
  • Inability to do usual tasks
  • Uncharacteristic grinding, clicking, popping noises
  • Pain from mild to severe
  • Acute stiffness
  • Sensations of pulling
  • Sudden locking or spasms
  • Swelling from mild to severe

Need for paradigm shift with Rheumatoid Arthritis disease activity

As much as we talk about what’s going on in cells with Rheumatoid Arthritis activity, these lists provide simple evidence of disease activity as patients experience it. However, these symptoms are not typically used to evaluate RA disease activity.

In Part 2, we’ll look at a possible paradigm shift in the way Rheumatoid Arthritis disease activity is viewed. PLEASE STAY TUNED for Part 2!

Meanwhile, please post what RA disease activity means to you!

Recommended reading

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/

66 thoughts on “A Paradigm Shift in Rheumatoid Arthritis Disease Activity? Part 1

  • October 13, 2011 at 6:30 am
    Permalink

    rawarrior #dxpsa here – measurable warming of joints/skin w/o fever (will use laser therm next attack) pain going up w/menstrual times

    Reply
  • October 13, 2011 at 7:34 am
    Permalink

    Disease activity for me includes many symptoms my rheumatologist insists are not part of RA . . . I currently take biologics as well as daily pain medications, so I am somewhat better than I was before medication, but certainly not controlled, by any means.

    Symptoms include various forms of pain in joints and radiating outward, swelling of joints, stiffness, popping and grinding, fatigue, low grade fever, weight loss / loss of appetite (sometimes offset by medication side effects), hair loss, difficulty sleeping (pain, difficulty getting comfortable), emotional aspects of dealing with chronic disease/ chronic pain, nausea, difficulty concentrating, and of course, the side effects of all the medications.

    Reply
    • October 14, 2011 at 8:06 am
      Permalink

      I guess I left out popping, and cracking all day long

      Reply
  • October 13, 2011 at 7:36 am
    Permalink

    What Ra means to me? Here’s my list:
    1) Fatigue/malaise
    2) Baker’s cysts
    3) Carpal tunnel surgeries (painful joints in hands)
    4) Chemotherapy, biologics
    5) Fear of infection
    6) Weakness
    7)I could probably go on…

    Reply
  • October 13, 2011 at 8:06 am
    Permalink

    I identify with “Uncharacteristic grinding, clicking, popping noises.”

    For years my shoulder blades crack/grind/pop every time I stretch — even if it is 50 times a day. And now my right shoulder blade area feels like it is getting looser? It is so weird. It now makes this popping noise at odd times that is a bit scary (kind of anyway). It feels like my shoulder area is going out of joint –very severe like. Does this happen to other RA patients? Does anyone else deal with stuff like this in their upper back? Is this the RA or just my weird body? Or when a person is an RA patient is everything in the body related to RA?

    Reply
  • October 13, 2011 at 8:32 am
    Permalink

    I’ve got the popping/grinding thing going on too. I had it before I ever got the joint pain that led to my diagnosis of RA. Everyone would tell me not to ‘crack’ my joints because it would give me arthritis (I know, I rolled my eyes too), but in hindsight I think it was just a sign they were dodgy anyway and then the other symptoms began!

    Reply
  • October 13, 2011 at 8:33 am
    Permalink

    For me, the pain and ache sometimes feels as though it comes from tendons and ligaments… as opposed to the joint itself. It is as if my muscles have “rusted” overnight and I have become the tin man in The Wizard of Oz. I wake up wanting to ask my husband for the “oil can!!!” (Remember the way he asked for it without even moving his jaw?) Sometimes it feels kind of like my bones are being slowly pulled away from the joint. (They are probably being pushed by internal swelling.) These are some ways RA feels so different to what I expected.

    Reply
    • October 13, 2011 at 6:07 pm
      Permalink

      Suzy, I can so relate! That oil can illustration is perfect — exactly how I am. My husband will say, Are you okay (I get all stiff after sitting for a while too). I’ll say, just give me a while. I’ll quit limping in a bit.

      Reply
  • October 13, 2011 at 9:13 am
    Permalink

    Constant cracking and popping of joints (shoulder, knees, toes, fingers (I sound like Pinocchio)
    pain, pain, pain ….. but always with a smile on my face lest anyone figure it out
    drastic weight loss (40 lbs. in 2 years)
    fevers
    fatigue
    Rainy days because the pain is worse although my rheumatologist does not believe that.

    Thank you Kelly!!!

    Reply
  • October 13, 2011 at 9:37 am
    Permalink

    Constant fatigue, a constant ache in my bones, cracking and popping when ever I move any joint, sensitive teeth and eroding gums…according to one dentist because I am too “lazy” to brush properly according to my RA doc and my new dentist it is a side effect of RA, a sudden weakness ankles…I will be walking and my ankle collapses and I fall down, and hands….they will suddenly let go of whatever I am holding or they suddenly tighten up and I am gripping too hard onto whatever is in my hand. Pain whenever I do too much (“too much” varies from day to day) pain and stiffness when I do not move around enough…also varies from day to day. The list goes on (and on and on)

    Reply
  • October 13, 2011 at 10:09 am
    Permalink

    I can see by the above comments I’m going to have to prioritize my upcoming guest blog posts on “RA Genetics 101: Glass half-full or half-empty?” Part 4: Advanced RA Genetics- Subtypes (ACPA+ vs -) and Part 5: What exactly is “Rheumatoid Arthritis”?

    They may not answer all (or even most) questions about various symptoms, but should at least provide more context for understanding the variations.

    Sorry, Kelly, for being so tardy in getting this done. Will try my best…

    Reply
    • October 13, 2011 at 10:22 am
      Permalink

      Your participation in the discussion is valuable to us – no apologies needed.

      Reply
  • October 13, 2011 at 10:15 am
    Permalink

    For me, what does RA currently mean?
    Paralysing Exhaustion.
    Joint pain and general ‘all over pain’ that can be too widespread to define it and is never completely relieved.
    Osteopenia.
    Unrelenting stiffness particularly feet, knees and hips.
    Painful, wonky toes that feel like I’m walking on marbles and are going to snap off.
    Permanently swollen left knee (including bony swelling inner aspect) less swelling of right knee but similar nasty pain and weakness in both knees 75-80% of the time.
    Audible cracking and popping sounds from knees.
    Soft, breaking teeth.
    Dry eyes and a small swelling that can suddenly appear on either cornea and can equally quickly disappear.
    Increasing physical limitations with personal care and care of my home.
    Increasing pain when walking especially outside the house and the need to use a wheelie walker.
    Anaemia
    Enlarged liver and spleen
    Swollen finger joints especially my DIP joints (the ones that ‘can’t’ be affected)
    Degenerative Disc Disease – largely lumbar including 3 ruptured discs (another area that cannot be affected by RA)
    Tendancy of ankles to ‘give way’
    Almost constant low grade fever
    Depression
    Inability to work
    Increasing difficulty in accepting my physical limitations
    From experience, this list is subject to change without notice

    Reply
    • October 13, 2011 at 10:21 am
      Permalink

      good to hear from u – was thinking about u yesterday Kath.
      My ankles give way too – I know my tendons are affected all over – so much evidence of it – anyway, I determined at a store last week to prove to my son I could walk in 3 inch heels – not narrow ones by any means -anyway, if the bottom of the shoe heel is at ALL narrower than the rest of it, I fall. Determination did not help. Of course before all this, I could, blah blah blah…

      Reply
  • October 13, 2011 at 10:50 am
    Permalink

    I have experienced most of what is posted in these comments in the last 8 years although I dont have enlarged joints just erosions. I have the “popping” in my back when I stretch.. dibilitating fatigue, hair loss (comes and goes), weakened muscles-tendons, nerve pain, weight loss, emotional swings from constant discomfort/life changes. Stress effects my body very much and I also am affected by the weather changes. It’s the barometric pressure that seems to make my nerves kick and my body feel like its compressing… I found a positive attitute helps MUCH!! My love to all of you… we fight this battle together!

    Reply
  • October 13, 2011 at 11:34 am
    Permalink

    My comment echoes Hurty_Gertie’s…my pain, fatigue, etc all increases during my premenstrual week, even now when I’m responding well to my medication the rest of the month. That week brings it all back.

    Reply
  • October 13, 2011 at 11:37 am
    Permalink

    ra warrior #thetackroom here- whew – can I just say all the above
    all over joint pain – hands and arms seem to be all the time because I need to use them.
    weak ankles,
    cant sleep due to joint pain
    definite weight loss – im currently 92#
    depression – sometimes cant leave the house
    depression because of the phy. limitations-
    unable to work – stress from finances
    physical limitaions to do things around the house- or for myself
    miss riding my horses – cant hold the reins
    my eyes have floaters/ dry/
    Ostiopinia – no one told me not to take calcium separate from plaqunil
    hands swell so bad cant hold utensils
    knees hurt
    feet hurt to walk
    Kelly – thanks for the outlet to let everyone speak out

    Reply
    • October 13, 2011 at 2:51 pm
      Permalink

      Kelly, I hear you. My two daughters are hunter/jumpers. We had a show two weeks ago…braiding two ponies has left me exhausted and miserable…and I didn’t even have to ride. Hoping you have relief soon so you can feel the wind in your hair.

      Reply
    • October 13, 2011 at 5:08 pm
      Permalink

      What is wrong with taking plaqunil and calcium at the same time ?

      Reply
  • October 13, 2011 at 12:51 pm
    Permalink

    I have the usual pain, stiffness, and fatigue. But I have also noticed things which my dr. says are not related to RA.
    brain fog – I forget everything from paying bills to picking
    up my kindergartener from school.
    nausea – I no longer care for food. I eat when I take my
    pain pills or start to get lightheaded.
    daily headaches
    I think there are many symptoms of RA that doctors do not believe are related.

    Reply
  • October 13, 2011 at 3:09 pm
    Permalink

    Activity to me means…
    ~debilitating fatigue
    ~joint noise and grinding
    ~ear and jaw pain…ear pain was one of the first symptoms I experienced.
    ~dry eyes
    ~brain fog
    ~achilles tendon pain…feels like a bow string about to snap
    ~all over weakness
    ~nerve tingling, especially down the underside of my arms

    I consider what I experience to be very mild, pain scale mostly in the 3/4 range w/ spikes to 6), compared to what some other poor people suffer through.

    Reply
  • October 13, 2011 at 3:51 pm
    Permalink

    I no longer have the usual stiffness & pain I used to have when I was diagnosed to have RA but I still do have sudden pain every now and then. My body temperature is sometimes unusual and I sometimes I have low grade fever. Some joints (right hand middle finger, 2 elbows, & left knee) are deformed. Right now, I’m kinda noticing hair loss (not sure if it’s cause of stress or medication or gravity) and my brother’s complaining that my hair’s everywhere. Lately there was fatigue but my rheum was able to remedy that by giving me Prednisone 10mg for 3 days (w/c i think helped a lot). There’s increased in joint pain whenever it’s that “time of the month”. I’ve had muscle atrophy but thank God for physical therapy & exercise those muscles were able to be put back to use. Depression. Weight loss/weight gain.

    Reply
  • October 13, 2011 at 6:40 pm
    Permalink

    Watching my “canary in the mine” joint for the moment swelling starts. Exhaustion beyond comprehension.

    Reply
  • October 13, 2011 at 7:01 pm
    Permalink

    I don’t have fevers, but occasional temps up to 98.9 (my temp usually ranges in the upper 96’s to lower 97’s.

    But I have do have most of the symptoms listed above. I don’t have the crackling shoulders, but I do have a crackling neck.

    When I’m flaring, I am hoarse (cricoarytenoid joint inflammation) and frequently have vertigo (benign paroxysmal positional vertigo (BPPV)). My current flare has both, plus the usual joint swelling and pain in my feet, hands, wrists, knees and hips.

    Sometimes I have red, itchy palms and soles of feet. Sometimes I have very dry skin on my arms that flakes off in large patches.
    Sometimes I have very dry eyes
    Sometimes I have a very dry mouth

    The joint erosion has led to my needing a total knee replacement on the right side – which was done in mid-September 2011. I had to omit my methotrexate for 2 weeks before and 3 weeks after. So now I’m REALLY flaring! My other knee hurts worse than the one that had surgery! Hands, feet, shoulders – all seem to hurt worse than ever. And my neck is crackling each time I move it.

    Fatigue is even worse – probably related not only to 5 weeks without MTX, as well as recovery from surgery and use of pain meds.

    Eventually, I might even be The Bionic Woman!
    Cheerio!
    Elizabeth

    Reply
  • October 13, 2011 at 8:30 pm
    Permalink

    Swelling of joints, weakness, this last week a continuous up & down low grade fever, chills, sweating all day long. Muscle & joint pain from my fingers to my toes. I feel like an aching/burning
    Its not my skin it’s like the layer under my skin in my legs, arms & face. Swollen hands & knuckles.
    An all around awful feeling, makes me wanna cry.. Yesterday I was
    In tears cause I felt so awful….this disease has turned my life
    Upside down.

    Reply
  • October 13, 2011 at 10:08 pm
    Permalink

    What does RA mean to me?
    Low grade fevers, that have been going on for the last year. Rheum lump on my thumb. Swollen hands and feet/ankles. Hand that look deformed. Pain and more pain along with morning stiffness that lasts on and off throughout the day.
    Sleeping on the couch so I do not keep my husband up with my constant need to move around for comfort.
    Loss of career, severe depression, not being able to walk more then two blocks.
    Making a to-do list, and hoping I can accomplish one thing a day that is productive.
    Injections, pain meds, weight loss/weight gain.
    Complete loss of control over my own life. Inability to perform the most basic tasks.
    Osteoporosis, re-constructive neck surgery from degenerative disc disease. More pending re-constructive surgery on the same cervical spine area that was already re-built once.
    Severe pain in the shoulder/neck and shoulder blade area that will wake you out of a sleep that takes hours and meds just to obtain.
    Doctor and lab visits that make it impossible to hold a job, even though the constant pain has already taken that away.
    Nausea, pain, suffering,swelling, and fatigue so severe that it is hard to understand the insomnia at the same time.
    Life altering disease that needs to have awareness and funding raised so maybe not only we can live more productive lives, but also for the generation that will follow in our footsteps.
    And last, but not least, and most importantly being your own advocate. Nobody will take this responsibility on for you, so you must speak up for yourself. If you ever feel that a dr questions your symptoms or pain levels, or lack of relief from current meds, time to find a more compassionate dr who listens and takes notice and belief in the words that you are telling them.
    I really could go on and on, but I think we are all smart enough to get the big picture. Now if we could get all the rheumatologists on the same playing field we might all end up better for it in the end.

    Reply
  • October 13, 2011 at 11:19 pm
    Permalink

    My symptoms are pretty well controlled at the moment (crossing my fingers as well as still can!) only my shoulder is giving me a really hard time right now. So in addition to the MTX I am on a prednisone taper to see if we can get it calmed down. I still get some pain and stiffness in some of my joints – knees, wrists, fingers, thumbs, but it is relatively minor and I am able to do most of what I could before, almost. But I have noticed that the joints that were most unhappy while I was flaring continue to have a different feel to them than my other joints, hard to explain, even when they are not swollen or painful, they feel full, as if there is too much inside the joint to move completely normally. The fatigue has let up a lot too although I am sure that the prednisone is contributing to my extra energy right now. But the loss of muscle strength is very distressing.

    When I first became ill, my muscles became weaker and weaker until I couldn’t lift my own grocery bags. This even before the joint pain was the primary issue. It was the first thing that sent me to the doctor. I am trying, now that the pain is reduced, to build some muscle tone, but it is really hard since my muscles seem to become so easily fatigued and my joints start to hurt with any real exercise.

    So I guess my symptoms are reasonably well controlled only as long as I am relatively sedendary – hmmmm, not sure that really works for the lifestyle I would like to have back.

    Reply
    • October 15, 2011 at 9:37 am
      Permalink

      That describes my situation as well. As long as I don’t try to do much, and I do mean very little, then I am not in a lot of pain. Try getting people to understand that…. Of course I do still have the random stabbing pains in my feet and hands. And that dull ache deep in my left hip isn’t fun either.

      Reply
      • November 13, 2011 at 2:58 pm
        Permalink

        don;t think we will ever get people to understand the part that we can’t do much (or for the younger ones, that we can’t keep up with people our age). I work part time in a flexible job (pay is minscle–but I can’t do full time) and whatever I do outside of that I have to be careful of how much, if I do excess I know I will pay for it.

        Reply
    • October 15, 2011 at 9:52 am
      Permalink

      Hmmm, let’s see – pain in my neck, shoulders, elbows, hands, wrists, hips, knees and feet. They trade top spot all the time. Oh, I forgot my jaws and the worst of all, my toes! Dear Lord, feels like someone has taken hold of them with a pair of pliers and is trying to twist them off. This is how I feel after working for a few hours cleaning or yard work. As long as I don’t stand too long, sit too long, use my hands too much, walk too far, etc. I maintain a hum, low grade pain in my joints. I will have the random sharp pains that make you hiss.

      Just as bad is the fatigue. Oh my gosh, I have never felt so tired in my life and that’s when I wake up in the morning. If I can get my mind really engaged then it’s not as bad. Trying to get my assignments done for school is interesting. I do as much as I can in the mornings because after a while my brain refuses to work and I just get nauseated. I start Algebra next week, could get very interesting. But if I pass, then my math requirements are taken care of for my degree.

      But all in all, I think I have it better than a lot of you folks on here.

      Reply
      • October 15, 2011 at 4:19 pm
        Permalink

        Good luck with the math, Becky. We don’t really compare – all RA is evil.

        Reply
  • October 14, 2011 at 8:22 am
    Permalink

    Thank you for this forum in which others list symptoms that are not always accepted RA symptoms in the medical community. If it hadn’t been for this forum, I wouldn’t have known that many of the weird symptoms I experience are indeed part of this disease. I’d like to mention another. My daughter, someone who has experienced debilitating migraines since she was five, saw her migraines disappear when she was diagnosed with autoimmune disease and started on Plaquenil. No migraine medication had ever been as successful. Unlike her, I had never experienced migraines until the onset of my disease about a year ago, when they came on with a vengeance. The neurologist I saw was puzzled because migraines usually disappear in the over-60 crowd, not suddenly appear. She ran several tests but was the first to suggest that this might be due to autoimmune disease. I was “lucky” enough that my ANA, RF factor and anti-CCP tests all came back positive, so after months of searching for a reason for the debilitation I was experiencing, I had an answer. So, I would add migraines to the possible symptoms.

    Reply
    • October 15, 2011 at 4:26 pm
      Permalink

      There’s no way to know about your particular headaches of course, but logically, it could have to do with inflammation in the cervical spine, which is very common with RA. There can be terrible headaches associated with that. I have them and they can become full blown migraines if the inflammation doesn’t get controlled. Just a thought that goes with your story. If you have any neck symptoms that go with it, that could be something to ask the dr about.

      Reply
  • October 14, 2011 at 2:24 pm
    Permalink

    Interested in some info on RA & it’s effect on the lungs. I haven’t has asthma is years and now it’s returned big time. i know you’ve posted on this topic in the past, but can’t find it .
    Kelly…or someone …Can you direct me?
    Thanks
    Linda

    Reply
    • October 15, 2011 at 4:29 pm
      Permalink

      I don’t have a specific post about that yet – it’s been on the list since I heard some researchers talk on it – the best thing I can say is to find a good lung specialist – not rely upon the rheum doc to know what it is and what’s needed. Hopefully more can be posted soon, but there are a couple of different lung issues that RA can cause. Also sometimes the meds can cause problems, too.

      Reply
  • October 14, 2011 at 3:19 pm
    Permalink

    Low grade fevers. Tired. But also pain that comes out of the blue. Walking across gym (I am a school secretary) and having to stop because of the pain in my ankle..just..like..that. Or moving laundry from washer to dryer. Move, move, oh my gosh drop clothes and grab wrist because the pain is so severe…just…like…that. Annoying! Or when someone says how you doing? And my knee is swollen and hurting. An hour later now my elbow is aching and knee doesn’t hurt so bad. : (
    I am doing Rituxan infusions, no mtx as I do not do well with it, and ofcourse all the inflammation drugs. I am doing much better. Just a few joints bother me, which is a blessing. But still. : ( RA stinks!
    Love reading all this and not feeling so CRAZY with my symptoms! Thank you everyone for sharing! : )

    Reply
    • October 17, 2011 at 4:07 pm
      Permalink

      Hi Jacqueline:
      I was forwarded the RA warrior thread by a friend. I’ve had RA for about 12 years. I’m currently on Cimzia, started in March 2011. At the same time I was started on MTX and low level prednisone, which I’m weaning now. I can’t know for sure which of the 3 drugs are responsible for the improvement, until I wean completely off the prednisone, but I would say the Cimzia is probably partially responsible. I’m not symptom free, by a long shot, but better, less swelling, pain, fatigue etc. I had failed Embrel several years ago, prior to that I was on Plaquenil which worked extremely well for several years, until it didn’t. I then went on an experimental treatment for 2 years which sent my immune system into overdrive. It’s hard to live with the uncertainty of when/if the current biologic will stop working…Best to you, Silvia.

      Reply
  • October 14, 2011 at 9:32 pm
    Permalink

    New to this site. Have had RA two years now and I too have developed exteme stiff shoulders and neck pain in morning that lasts for several hours. Enbrel quit after 1 1/2 years. Can’t take much ibuprofen so use heating pads and tens unit. Have been on Cimzia for one month-not much relief. Is anyone else on Cimzia for RA? How long does it take to get relief? Did not know that biologics would quit working. And in the afternoon the pain in shoulders and neck go down into back.
    Last winter with Enbrel I asked my doctor if I still had RA! Then Enbrel became very ineffective. I thought I could go years with Enbrel. Since Enbrel became less effective my RA has really became more aggressive with the major pain in neck and shoulders. Also have symptoms in fingers,wrists,knees, ankles and toes. It’s upsetting that I am getting worse along with fatigue. I was really hoping that Cimzia would help. Any comments on Cimzia very appreciated. So tired of all of this pain and having to constantly think about this disease and how to take care of this pain.

    Reply
  • October 14, 2011 at 10:37 pm
    Permalink

    I completely identify with every aspect your summary – especially re: teeth and ankles. Having been a 3-mile-per-day runner for years until April 2011, I was unable to understand how anyone could possibly become so weak in such a short time frame. Your words help me to see that, no, this isn’t just a bad dream, but there are others out there who understand. Thank you

    Reply
  • October 16, 2011 at 12:52 am
    Permalink

    Waking with stiffness
    Walking with unbendable ankles
    FATIGUE
    Forgetfulness from fatigue
    loss of appetite
    Pain in hips, knees, ankles, elbows, feet, hands, wrist
    Other people’s doubt
    Weakness
    Fear of falling
    Fighting blood test all the time, too low, too high, add this, take away that
    Fear of loosing my life
    Fibrosis in both lungs
    endocarditis
    ….
    ….

    Reply
  • October 18, 2011 at 7:40 pm
    Permalink

    Had my first round of Rituxin today. Hope it helps. Has anyone had extreme sweating around the head and neck. Thought this summer it was the heat, but it has gotten much much worse and comes on for no apparent reason. HELP

    Reply
  • October 18, 2011 at 8:34 pm
    Permalink

    I have a lot of the same things others have listed but some other things as well so here is my list:
    1. fatigue & brain fog – Why is my electricity not working??? Ohhh, oops, forgot to drop the payment off.
    2. swelling and pain from my head to my toes
    3. phlebitis in my legs causing pain & itching at the same time and then horrible full leg swelling from fluid. The Elephant Man is my newest idol.
    4. dry eyes that nothing helps, sometimes with swelling & pain – eh, not having red, bloodshot eyes is highly overrated.
    5. low body temp-usually in the 97.8 area but the worse I feel the lower it goes, however occasionally when I actually am feeling better, I will run a temp of about 101 or so – Yes, I’m one of those who doesn’t have to turn the AC on until it hits 85 or so, however my dog doesn’t seem to agree?
    6. Horseness – actually, it great for getting people to shut up and listen instead of arguing because they can’t hear you.
    7. my morning pain & stiffness(not to be confused with the ongoing daily normal pain mind you) now starts in the afternoon instead of waking up with it, yeh just about the time I get off work.
    8. developed nodules on my thyroid in addition to the goiter I already had and had to have half of my thyroid removed.
    9. sternum pain making breathing difficult sometimes, but like other things, breathing is highly over rated
    10. flares in my neck & upper back between my shoulder blades, pinching nerves causing tingling in my hand – Humpback and claw, great combo!
    11. bone spurs on my lumbar spine region making walking difficult – add the humpback from the swelling and I do a great Quasimodo immitation!
    12. pain from bone on bone rubbing(but as we all know if there is no swelling, the pain doesn’t exist 🙁 !)
    13. Excessive weight gain – you know, calories in, calories out, lose weight. Only problem is when you can’t walk, you can’t….oh heck, you know.
    14. no appetite – Wish that accounted for something
    15. horrible acid reflux if I forget to take my Nexium – even water will cause it…seriously, water????
    16. insomnia because my hips or shoulders hurt & wakes me up – if I see one more stupid bra commercial for bandaids that wouldn’t hold more than a thimble and if you do, you have to wear more than one…..
    17. early menopause – actually this one is good except that once in a blue moon, oops!
    18. ability to tell within about 12hrs that it is going to rain or snow – I have it down to a science now!
    19. getting to park in a handicapped spot for Christmas shopping, but my blood pressure goes up when they are all full – actually its anytime I go & they are full, I get all type A, sure that most of the spots are taken by fakers.
    20. & the big one:Depression – this is the hardest to deal with. I’ve had to rediscover the things that make me happy. Little things like going for a drive on a nice day, getting back into my photography, going to festivals and places where there are lots of people and just watching the interactions, Sitting on the bed with my dog, giving her back some of the love she always gives me unconditionally. At the same time having to do it alone, because this disease is not exactly conducive to having a relationship or finding a significant other.

    And that is my list. I’m sure there are things I left out, but, that’s life. The plus side to this is that I have someplace I can come where people understand how I feel. Trying to figure out where I fit in now in life.

    Reply
    • October 19, 2011 at 8:59 am
      Permalink

      The weight thing is a kicker, hate it!! Bad enough we have to hurt like this, do we have to gain so much weight that I’m sure it is hurting our joints as well? And then we feel bad about how we look. I don’t even want to look in the mirror, it’s like insult to injury.

      Has anyone else had a loss in being able to smell? Noticed that my kiddos remarked about a bad odor in the living room where we are doing some remodeling, a heavy musty smell. I can’t smell it. I’ve noticed that I have much more nasal drainage than before with no other allergy symptoms, figured it was the ol’ immune system carrying about nothing as usual.

      Reply
  • October 20, 2011 at 1:48 am
    Permalink

    Severe fatigue.
    Sudden weakness.
    My right ankle will sometimes lock and not bend (not sure if this is RA or my OA)
    Grinding /popping in both knees and right shoulder.
    Brain fog.
    Constantly dropping things, not much grip in hands now.
    I now lack confidence in my ability to do many things.

    Reply
  • October 20, 2011 at 1:52 pm
    Permalink

    I didn’t notice anyone mentioning seasonal changes effecting RA. Autumn and winter are killers for me. I live in Colorado and we get very abrupt changes in weather, especially in the Autumn and winter. All my life I’ve loved the cold and snow, now it’s my worst enemy. In the past week we suddenly took a dip from very hot to very chilly. That caused my whole body to react. The last week has been extremely unpleasant. I also have fibromyalgia and it also reacts to the cold. So my joints and muscles explode. My pain medication doesn’t even faze it. The worst is in the evening. The strange thing is that even though I’m in considerable pain, after I take my evening meds, once I get settled in I usually fall right to sleep. I sleep in a siting position in a recliner because if I sleep prone my shoulder joints flair up as I tend to shift from side to side. I’m at my best in the summer with minimal pain and nearly no flair ups, but we only have 4 months of warm weather. Is anyone else so dramatically effected by the seasons/weather?

    Reply
  • October 20, 2011 at 2:09 pm
    Permalink

    In regards to other symptoms, I suppose they’re the usual:
    My feet swell up like balloons.
    If I go out for more than 2 hours, I limp, hips and legs progress from sore to very painful.
    Fatigue that makes me groggy all day, even 3 or 4 naps don’t help.
    Hands are increasing in aches and pain.
    Knees are increasing in aches and pain.
    Decrease in appetite, but an increase with a sweet tooth.
    Craving for certain foods; which is my body telling me what I need.
    Irritability and anger, but I am achieving self discipline in controlling them quite well.
    Severe chills, God I hate that.
    Deformity seems to be going very slowly, which might be the Plaquinil.
    Depression with episodes of disgraceful self pity, but I’m overcoming that really well.
    Over all, I think I’m handling this real well. But then I’m old (63) and I’ve lived an extremely active life, I have no right to complain. My symptoms didn’t begin until I was 56. I’ve seen the world and done things most people only dream of. Sure, it’s terrible, but if it’s the price I pay for such a grand life, it’s all worth it. I feel so sorry for those who get this when their young. That’s a brutal cruelty.

    Reply
  • November 13, 2011 at 2:34 pm
    Permalink

    RA– for me began as a young child, doctors realized I was likely born with it and the onset of Rheumatic Fever at age 7 made it even worse. Now that I am well into adulthood, entering my 40’s, I still see the effects. Many say childhood RA ends with childhood… I disagree.
    For me it is highly manifested in fatigue that hinders my daily life in numerous ways (to me this is the hardest as I want to be able to do things but can’t). It is also in the tightening of joints, in an elbow that calcified in my jr high days that is still with limited mobility (constantly bent with just slight movement) and often aches, it was the removal of my little toes in my 20’s in an atempt to stop my feet from curving into a C shape (which so happened to work), it is in dull aches that come and go and when I am active (as in doing a big project in my yard or home) it is days and months of pain to follow. It is in TMJ (jaw joint) issues that have led me to experience some of the worst pain ever imaginable (Dr. Ferrand Robson (Tacoma Washington) a TMJ specialist has been able to help me get it to a level where I have little to no pain–before I had headaches and neck aches and spasms that are not explainable in words) I am also aware of the low grade fever, skin issues, and eye soreness. As well as teeth that will never be white (more like grey) some say from the medications that I was given as a child.
    At this point I am not on medications. I don’t believe their benefits are worth the risk, in my case. I prefere heat to cold when I have flair ups as cold only makes me hurt more. You have to listen to your body and make adjustments as it tells you. That’s what I’ve done along with moving and eating healthy.

    Reply
  • November 13, 2011 at 2:39 pm
    Permalink

    PS. Seasonal and weather changes play a big roll in how I feel… be it added fatigue, aches, joint stiffness, and pain. Especially shifts from hot to cold and colder. Rainy days, lets just say, I know when its gonna rain (it hurts).

    Reply
  • November 13, 2011 at 2:50 pm
    Permalink

    PSs. My left ankle locks up at times and is often stiff, increasingly so (makes it hard to walk as it won’t bend). I also experience grinding and clicking in my joints (jaw, knees, ankles, etc). I don’t have issues with weight (thank God–I was blessed with my grandpa’s genetics and high metabolism although he also had Rheumatic Fever and died of heart complications in his mid 70’s). Brain fog is another I am very well aware of.
    I also have a hard time fighting off illness (simple seasonal colds, bronchitis, etc) Anyone else have this?

    Reply
  • August 31, 2012 at 1:24 pm
    Permalink

    I was diagnosed with RA about 15 yrs ago. It took 2 long years to be diagnosed. I have had 3 surgeries and need 2 more soon. My biggest problem is the fatigue and flu symptoms that I experience. Sometimes I think I’m going crazy because no one seems to understand how miserable I am. I try not to complain, simply because I’m even tired of hearing myself!
    I’m so thankful for your website. Even my Rheumatologist won’t take the fatigue and miserable way I feel seriously.
    Thank you for all this wonderful information.

    Reply
  • August 11, 2013 at 9:16 pm
    Permalink

    my symptoms, although they change daily… that aren’t “typical” and my rheumatologist doesn’t believe are
    fatigue,
    pain (my rheum says Rheumatoid Disease doesn’t hurt)
    fever
    chills in the evening
    swelling
    in addition to regular pain, there is sharp knife pains
    brain fuzziness
    dropping things i try to hold
    sudden weakness in one or multiple joints
    feeling of joints “twisting”
    sleeping – I can fall asleep sitting up, but can’t stay asleep because of pain
    hearing loss (this is new, going on 1 month)
    breathing difficulties – some days I can be almost normal, but some days I have to stop and catch my breath after a few steps, and every cold goes right to my chest and takes 1 – 4 months to recover. My rheum says it’s not RA because there is no congestion, but my primary says it is BECAUSE there is no congestion.
    it’s a journey every day.

    Reply
  • August 11, 2013 at 9:55 pm
    Permalink

    I have the usual stiffness and joint pain. My neck causes alot of pain with radiation and numbness into both of my arms and hands. I run a low grade fever as well, but the worst problem of all is flu-like symptoms. It happens almost every day, especially in the afternoon. I feel just like I have the start of the flu and the body aches are awful. The fatigue becomes overwhelming. I’ve also been experiencing “trigger finger” like symptoms, especially in my middle fingers. I have no strength in my hands anymore. Simple tasks have become difficult. I am a positive person and try and stay upbeat and happy, but sometimes behind the smile is alot of pain.

    Reply
  • August 11, 2013 at 10:35 pm
    Permalink

    Besides the usually expected symptoms I also get tingling in my hands and feet from the inflammation and lax ligaments in my hands causing the joints to shift. The most annoying currently is the one day flares. I feel like I have the flu with loss of appetite and chills but everything hurts from muscle to joints. 10mg of hydrocodone every 4 hours help somewhat and I was managing it when it occurred monthly but now it happens every 3 or 4 days. My rheum knows about it and realizes that we need to do something to slow down the disease activity but until then I despair

    Reply
  • August 12, 2013 at 12:00 am
    Permalink

    I don’t know for sure if what I have is RA (I got tested early last week and it came back negative), but I highly suspect that RA is what I do have. The doc even said that I could just be in the early stages and could test positive later.

    My symptoms:
    – Drastic weight loss (10 lbs in 1 month)
    – Hair loss
    – Fatigue
    – Joint pain (especially in both hands where I also have tendonitis)
    – Deformed finger/hand joints
    – I react to almost everything (my diet is massively limited, to the point where there’s not a whole lot I can actually eat!), despite testing negative to 99% of the food with allergy testing.
    – Joints locking in place (fingers only at this point) often
    – Hands tingling and going numb fairly often

    I don’t know if these are related, but my migraines have increased in frequency (it would probably help if I ate more, though!) and despite my asthma being controlled well with my medicine regimen my asthma has gotten worse lately.

    At this point I don’t care what any tests say, I have RA, or at the very least a similar auto immune disease. (Tested negative for Lupus. Ehlers-Danloes Syndrome was mentioned but ruled out.)

    Reply
    • August 12, 2013 at 12:05 am
      Permalink

      I also get bronchitis twice a year every year. And it seems like the last few times it is taking longer and longer to get over it!

      Reply
  • August 12, 2013 at 12:43 am
    Permalink

    Along with pain, stiffness, aoreness, sometimes I get a general feeling of horribleness. Almost like your organs are failing. I guess to sum it up *feeling cr@ppy!”

    I sure have not experienced any weight loss. In fact I have to work extremely hard to keep weight off.

    I hope everyone starts to feel better and get some relief from this crappy disease.

    Reply
  • August 12, 2013 at 3:08 am
    Permalink

    i have problems keeping weight down bcs i can’t exercise or move enough, altho i force myself to swim or walk 3 X a week despite a really bad knee and deformed feet.
    The symptoms are migratory- some are constants, but flare ups or problem areas can “migrate” from one set of joints to another. hands were doing better last week – this week, swollen. next week it may be somewhere else.
    Definitely dental problems. These are not covered by medicare at all.
    I can’t do many things i used to enjoy, I miss a lot of events activities and opportunities bcs of this disease. This creates some isolation and depression.
    Also important to point out – stress and certain foods can cause flares, its not easy to manage the disease when so many things impact it.

    Reply
  • August 12, 2013 at 3:30 am
    Permalink

    Oh my goodness! Finally an explanation for the sensitivity and wearing off of my teeth! It feels so good to have answers.

    Reply
  • August 12, 2013 at 4:46 am
    Permalink

    Severe eye problems have been my worst issues these past few months. I’ve been on prednisone since December and this is controlling the joint pain and is helping the fatigue. Although I use Restasis, I’ve had tear duct plugs twice to help with tear production. Some days the sensitivity to light is unbearable and I have to stay in dark places (a real problem at work and a real fear driving home from work). At 52 I’m having cataract surgery this month (also thanks to RA). I began a new treatment 2 weeks ago, Remicade infusions, and pray that this works and will get me off of Prednisone (without the Pred, the pain in horrendous and raising my head to change positions requires too much energy). I had allergic reactions to Humira but so far the Remicade has only caused Thrush and some minor skins reactions. Would love to know if anyone has had any luck with special diets or supplements in place of these harsh medicines. Most days I manage to keep depression at bay but the fears of disability edge in often enough and I can’t spend much time trying to think of the future. Any suggestions would be appreciated.

    Reply
  • August 12, 2013 at 8:27 am
    Permalink

    Omg, you want the list??! I have carpal tunnel in my left hand, trigger finger, blurry vision, and could sleep 12 hours a day. My RA began as severe muscle pain in my upper left back, went up my neck, and into the back of my head. It felt like someone took a baseball bat to the back of my head! I spent months going to a chiropractor and massage therapist, and took countless muscle relaxers and pain pills. To this day my doctor doesn’t see the connection, but three months into that pain, my knuckles were red, swollen and painful. Then it moved to my knee, and my foot, and my shoulder. My aunt said to me “Oh honey, that’s not just in your joints, I know, it goes everywhere!”

    Reply
    • August 12, 2013 at 8:32 am
      Permalink

      That bat to the back of the head is terrible, I agree.
      Your story is classic Karla! It didn’t strike your hands first, but that is what they believe it strikes first so that is the first place they “saw” / acknowledged it.

      Reply
  • August 12, 2013 at 4:04 pm
    Permalink

    I was only diagnosed last October although I have had problems with my upper back for years – pain, grinding noises in my shoulder (I remember scaring friends at school by rotating my shoulder to make it grind)and limited movement. My GP told me I wasn’t going to get what my dad had as RA is “not hereditary” and that I had fibrositis (which no other doctors have heard of. Whenever I’ve asked GPs about the pain I was suffering and if it could be RA, they’ve said no because my hands were ok. Eventually, when I became almost immobile in a matter of weeks I was referred to a rheumatologist and diagnosed.
    My physio says my back and neck muscles are very tight and my shoulder blades can be pulled away from my ribcage.
    The meds I am on (hydroxychloroquin) have helped no end but I still walk with sticks and suffer pain although the rheumatologist said I should be able to give up the strong painkillers.
    I wake at night in discomfort and pain. I can’t sleep on my side for more than an hour without the pain waking me. I have definite weakness in my hands and arms. Every so often I go ‘fuzzy’ and have to shake my head to clear it. I have limited movement in my arms and shoulders. Still need help dressing and undressing. Tiredness? Don’t talk to me about tiredness. If I don’t have a couple of hours or more resting in an afternoon, by the next day I can’t do much at all except sleep. The other day I took my grandchildren out for the day. Nothing strenuous, just a drive of less than an hour then going round a wildlife park in my mobility scooter, then drove back. The following day I could hardly move. Not just stiff but exhausted.

    Reply
  • August 12, 2013 at 4:14 pm
    Permalink

    My symptoms:

    * constant low grade fever (100 to 101 F) which breaks and I pour sweat — one rheum already told me “that’s not a fever”. My normal temp is 96.4, has been all my life. An increase of 4 to 5 degrees for ME is a fever.

    * swollen hands, sausage fingers, swollen ankles

    * feeling like my joints have a sunburn inside, or like there’s something in there forcing the bones apart

    * pain, sometimes severe, sometimes just naggy, but always always THERE.

    * morning stiffness that takes at least 1 to 1 1/2 hours to loosen up

    * never-ending fatigue; absolute sheer exhaustion

    * depression

    * sore elbows and hips that feel like they’re slipping out of joint

    But the one rheum I’ve seen (who was a jackass, so I fired him) said it’s not RA. When I asked him what it was, he shrugged and said, “I don’t know, some chronic pain syndrome, but it’s not RA.” Based solely on a negative RF test — I’m seronegative. I have an elevated CCP.

    I see another rheum in October. 2 more months of barely being able to function. I hope she does something for me. I’m really tired of trying to live like this.

    Reply
    • August 12, 2013 at 5:40 pm
      Permalink

      Lorri, it seems like they are made using some kind of mold to make them the same. How on earth are so many of them saying the exact same things?
      Good luck in Oct. I know it’s hard to try again but if you find a good one you’ll be so relieved.

      Reply
  • August 13, 2013 at 12:18 am
    Permalink

    I am now suffering from my teeth breaking down. Also I am losing my hair not sure if its the meds or the RA, what an illness. The fatigue of course, and low grade fever. The only good thing has been the weight loss, most days I am just not hungry, feel slightly nauseous when I wake up and am to tired to cook or even make a sandwich some days. I started using a crock pot which has helped immensely not to much prep time and can make enough for a few days so I don’t have to try and cook everyday. Cat Wester

    Reply

Leave a Reply

Your email address will not be published. Required fields are marked *

“imaware™

    Welcome to RA Warrior!

    Welcome

    Thanks for visiting this unique site full of information and encouragement to fight Rheumatoid Disease. You'll find hope, humor, and a helpful online community. I'm Kelly & I'll be glad to show you around if you'll click right here.

    Advertisement

    View more gifts at Zazzle.

    Let's Pin Together!

Would You Like Free Email Updates?
Stay in touch with RA Warrior.
We respect your privacy. Your email address will never be shared.