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?
For 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:
- Swollen tonsils or lymph glands on one side or the other
- Periodic symmetrical rashes on arms or palms
- 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
- Cricoarytenoid Arthritis in Rheumatoid Arthritis, Part 1
- Rheumatoid Arthritis Weight Loss
- Rheumatoid Arthritis Fevers
- 25 Tips to Manage Rheumatoid Arthritis Fatigue
Currently I have blisters on both palms that I’m told is Soriatic arthritis. I’ve been off all drugs for 10 days because of excruciating stomach pain. Every part of me is swollen an hurts. Irritable bowel syndrome is one other symptom of RA that they don’t tell you about…ciao
I’m a little late to this discussion. I’ve had RA (technically JRA) for 29 yrs, with the eye symptoms (iritis, glaucoma) preceding it by 5 yrs. I’ve read about the itchy palms with fascination, because I too have had this happen to me, albeit very rarely.
My strange symptom is swollen lumps (lymph nodes) in my armpits that come and go seemingly unrelated to flares. I never ever get swollen lymph nodes in the jaw / neck area. I once had a swollen lump as big as a small egg. Ugh.
Hi i have also random gland swelling in the neck/throat one side usually the left possibly other things i havent pin pointed to my RA other than the usual swelling of ankles hands or knees
Oh gosh I have some many of these strange symptoms. In some ways its nice to know they are not so ‘strange’.I have PsA so I guess some of these may be a little different but I get a sore roof of the mouth before a flare and a runny nose! Have a couple of odd swollen glands too but always put them down to by PsA being triggered after getting epstein-barr virus. Oh and I definitely have the odd lumps which apparently are calcifying bits in my tendons but they look a bit weird…
Hi all,
When I was taking NSAIDS I found that a great relief for my painful stomach was drinkable Aloe Vera. (purchased from the pharmacy) It soothed my entire digestive system and made the NSAIDS useable for a little longer.
Eventualy I gave up the NSAIDS and was able to replace them with paracetamol and alternative anti-inflamatory dietary supplement, not quite as effective but certainly more manageable for the rest of my body. Athough now, when I’m flaring I take a NSAID occasionally – It’s amazing how much more effective they are after not taking any for five years!
I just managed to stumble across the site a few weeks ago, and I think it’s great.
I’m 44, male, and have had the damnable stuff for about 10 years now (well, that’s when I was diagonised — looking back, I had symptoms well before, starting in my late 20s).
Yes, of late I’ve noticed my fingernails and toenails are changing with weakening along vertical ridges and and a tendency to grow mishaped. My right pinky toenail is “curling”, sort of a pincer shape.
And I have swollen lymph nodes too, usually on the left side of my neck and they’ve done that for years. My throat is a mess, but I’m not sure if that’s due to RA alone or the GERD I’ve developed due to the NSAIDs and Prednisone.
Me, it’s never been in my hands, although one knuckle swelled once. It hit my right knee first, then my right hip. Which is funny because my first rheumatologist said “RA never gets in the hips”. Yeah, right.
My hips are my worst joint! How can these docs definitively rule out whether or not a joint can be affected? Especially a large, weight bearing joint like the hips? Basically in my case, if it’s hinged, it hurts!
I do not believe they can without your verdict on the subject. They are relying on their eyes instead of your input. I think a patient knows.
This is so informative! I can check off to so many of these, including the electrical shock feeling. I’ve always had symmetrical Dyshidrotic Eczema on my hands and feet, long before I had any RA /potentially MCTD symptoms. It starts out red and intensely itchy, then forms little water blisters, and then dries out and flakes off. It is particularly painful between my toes, and I have to explain that no, I don’t have athletes foot. Desitin (diaper rash ointment) seems to work better than cortisone creams, especially if my feet get damp. Plus, it’s a lot cheaper!
I also break out in itchy, teeny red spots on my arms, which I just learned are Petechiae. I feel lucky that my skin has always been a bell whether of an approaching flare for me. If I can slow down when I get eczema, and before any other strange rashes develop, I can usually stave off a flare. If the other rashes have started, I have to go to bed, because a fever, swollen lymph nodes, inflamed lungs and achy joints, etc. are coming. This usually at least shortens a flare.
Lately I have had three strange new symptoms that don’t seem to be tied to flares. They are either always present or random. The first is that occasionally when I am eating or drinking, it seems like my throat is not automatically closing off the swallowing “valve” that allows food to go down the right tube, and food “goes down the wrong way”. So I start to choke and cough. Any clue or ideas about this?
The other two are now almost an every day thing. Now at night when I’m trying to go to sleep, it feels like the skin on the bottom of my feet has shrunk, almost like dry skin. I put on lotion and white socks, but all it seems to do is distract me from the tight feeling. I keep my skin generally well moisturized, and I don’t see any cracking or flaking, apart from when the eczema the pops up before a flare.
Also the balls of my feet where my toe bones connect to my feet are starting to really hurt from the smallest toes in. My feet in general have increasing become more painful. The spot under my left little toe and now sometimes my right little toe, feels like I’m stepping on a rock. At first I thought maybe it was a corn or something, but no signs on my skin since this started about six months ago.
Thanks for the reassurance and the input!
Hi,
I also get the choking thing you are talking about. i know this is late but I figured I would respond. I got a endoscopy not too long ago (not for this but for something else). and my Dr. asked me if I often choked and diagnosed me with Eosinophilic Esophagitis. I know this sounds long and scary but its not 😉 check out some more information here:http://www.medicinenet.com/eosinophilic_esophagitis/article.htm
I also believe it is important to note that I have have had RA for 8 years ( I am 27) and I was first diagnosed with JRA at age 3 which went into remission a year later. So, I do believe it is affiliated with auto immune issues. Hope this helps!
Oh my gosh, I have the problem with the feet feeling like they are so tight on the bottom, my hands also do it but not nearly as bad as my feet. I have been trying to find a lotion that will sooth them for longer periods. So far I haven’t had any luck. I also noticed that the bottom of my feet are really red some days and that the lines seem to bee really deep. Have you noticed this?
My rheumatologist prescribed Urea Cream, 40% for my feet. It helped soften and heal my feet considerably. I have severe Raynaud’s and have had ulcers twice before. An OTC product that might help is AmLactin Lotion. They make a strength specifically for feet. Hope this helps.
The weirdest thing I experience with my RA is foot pain. I feel pretty blessed thus far because as long as I take the methotrexate/Enbrel combination I feel “normal”. But the heel pain is unexplainable.
I so appreciate you, Kelly. I was just diagnosed six weeks ago and you, and all your links, have been invaluable as I learn about this disease. I also appreciate everyone who takes the time to post – reading about your symptoms has been a relief to me in that now I know I’m not going crazy! The intermittant shocks, occasional swollen glands, and sometimes bright red palms made me feel like I was turning into a hypochondriac.
Since my MTX dosage was raised from 15 mg to 20 mg weekly, I sneeze constantly like I have a cold and have an itchy throat for exactly 3 days after taking it — every single time. I have seasonal allergies, but I’m okay the rest of the week, and there doesn’t seem to be any correlation with weather or pollen count or anything else. It’s not a cold; it’s just weird. Beginning to think I have an MTX allergy, but it’s really working and I don’t want to stop or take something else. I’m seeing my rheumy this afternoon, and suspect he’ll 1)laugh and 2)raise my dosage even higher…he believes in aggressive treatment.
I just got diagnosed with RA and i go to rheumy in august,but jw if anyone has weird sensations in their hands that make it hard to touch things like paper or really anything not soft?weird i know and i have actually had this weird thing almost as long as i can remember!
thank you – thank you – yes I have had the swollen lymph glands – severe weight loss – 98lbs – and the electric shocks in my shoulder. I am in physical therapy as my arms are shot. have not been able to work.
I also have a nodule under the arch of my right foot. Sometimes it hurts when I walk sometimes it don’t but most of the time I don’t know it’s there.
Hi, firstly I think you do a great job raising RA awareness. I was diagnosed last August after years of joint aching which was always put down to growing pains. My weird symptons are red patches that look like sunburn but then dry up a little like eczema and my lymph nodes are always swollen at times visibly. My rheumy has put this down to my RA. I’m on 15mg of methotrexate and take folic acid daily.
I am suddenly getting severe heat surges and sweating (I THOUGHT I was past all that) but it doesn’t feel like the menopausal flashes I had years ago. I THINK these are in place of fevers. Or maybe I should say they are evidence of some kind of fever breaking. But I never have a real “fever” measured in degrees.
I’m also having problems with my lumbar spine. Now, I know this isn’t “supposed” to be a symptom involved with RAD, but tell that to my MRI that shows severe arthritis as well as degeneration all through the lumbar area. I get nerve pinches in there that radiate down my legs, especially on the right, and my leg just goes out from under me. If it’s a day my hands hurt too much to use any of my canes (different handle shapes) I just hobble around the house going from chair to chair and hope my leg doesn’t give out between them.
I had the same back pain you describe. My dr did a medial branch block (8 shots of cortisone) in my lower back while I was asleep about 4 weeks ago and my back pain is next to nothing. Ask your dr about this procedure.
After all this, my strange symptoms seem to be normal! I’m quite sure docs have no idea how common these uncommon symptoms are. Mine include:
– hoarseness
– frequently choking (on nothing)
– swollen glands in neck/shoulder region
– skin sensitivity
– flash “heat” in my checks/chest, turning red and hot
– skin aging/wrinkles/crepe-y (probably from MTX)
– rib cage pain, especially when bending
– in periods where flare recedes, get restless leg syndrome BIG TIME. This was a huge notable symptom prior to my first big flare and eventual diagnosis. I’m sure there’s a link between RLS and disease flare!!!
– Bursitis in shoulders
re: turtlemom…read dr.lee’s ‘everything you need to know about premenopause’ and then the follow up, same title but about menopause…the book is basically about progesterone therapy. read the book, he sets out a basic prescription, also available over the counter in the USA. all those symptoms will be drastically reduced . my RA went down hugely as well as all those symptoms which I had. it’s been 7 months for me using and it is a miracle.
About 2 years ago I had a small patch of redness on my left cheek. It just wouldn’t go away and eventually it spread all over my face. I went to a dermatologist that said it was rosacea. If I became warm, anxious, cold, was in the wind or sun my face turned deep red and rough and scaly. I used several topical ointments that were prescribed but the relief was short lived. Nothing helped. I felt it was related to the RA somehow. I started using a cleansing cream and body oil made by Dr. Hauschka, which has some products based on a homeopathic model. The very first night I used it the redness had diminished by half. I continue to use it and the rash and redness is gone. I think my skin has become hyper sensitive to any chemical additives, which these german products do not contain.
My hair is much thinner, which I think is a side effect of the MTX, also have ridges on my nails and my toenails are curling up. I don’t know if that is from the RA or not but it sounds like the ridges on the nails is common. Dry eyes is another problem. I had no idea it could be related to the RA till I read it here. I’ve noticed too that my thinking is really muddy sometimes. I liken it to chemo brain and wonder if the MTX isn’t the cause.
Has anyone else ever had a high D-Dimer during a flare? I went to the ER in a full body flare not knowing what was wrong with me before DX. They did a D-Dimer test, results came back with a 2.2 Critical High. Also ESR was a 30. Smart ER Doc, told me I had what he believed to be a false positive D-Dimer due to the fact he would bet the bank on me having RA, not blood clots. The reason my count was so high?? Severe inflammation throughout my body. Of course my first Rheum Dr wasn’t convinced because my RA test came back neg(I had been on heavy does of steroids by then) so he took me off of all medications(stepped down my pred over a weeks time)and put me on prescription strength Ibuprofen for 6 weeks. That was fun…Then the ultrasound came back positive, back on Pred, doubled the dose. They just won’t listen to you.
Have not had that test or hear about other RA patients having it. But fibrinogen is something that is discussed in RA research. This is interesting.
Why are there so many of them that won’t listen, Becky? Wish I could figure it out.
I had this same problem and thought it was sinus also at first. I started to have tooth problems as well and before I had only had one cavity in my entire life. I went to dentists who told me you don’t brush enough (if I brushed any more i’d never leave the bathroom) or you drink to much of this or that or it’s your smoking. I started with the cough like you have then it went to lose of tooth enamel and then to cavities in almost every tooth i have at the gum lines. After I was diagnosed with RA and saw the Rheumy for the first time she noticed I had the cough and had a drink in hand so she took a closer look. Turns out it is Sjogren’s Syndrome and while my mouth doesn’t feel dry all the time my throat did. She said my saliva glands were not producing enough and didn’t have the right chemical balance to be able to kill the bacteria and that is what was causing the tooth problems. She started me on Pilocarpine 5mg 3x a day and it has been a life saver for me. I know they have other meds as well that do the same thing if that one doesn’t help you. PLEASE don’t let it go and press the issue even if you have to find a different doc to help you with it. You don’t want to end up with the dental problems I have if you can avoid it because it is no picnic. Also,as a side note the sinus meds will make it worse and in my case counter act my Sjogren’s medicine. I hope this helps you find an answer soon.
Thank you for some great info, I was beginning to think I just had horrible teeth. Once my wisdom teeth came into the picture in my early teens my dental issues were off and on, but since I began treatment for RA it has been down right nasty. I’ve been lucky to have some great doctors in my corner and now I’m a little surprised that they have never addressed the Sjogrens symptoms. As for my teeth issues my dentist has always put it off to high temps and huge doses of antibiotics, and unfortunately I accepted that and did not look any further. This comes with great timing as I have an RA appt in two weeks and will definitely make a point to discuss my dental concerns with him at that time.
Kelly, Thank you for always coming up with great topics to discuss. Since this line of discussion opened up on your blog I have gained several new tips to tackle problems that I thought were my own to suffer through. One I started right away and that was to add Biotin to my regimen of pills and in just this short time it has already made a great difference in my hair and nails! 😀 Funny how we know that there are others with RA, but yet silently and privately it often still feels like we are out there on our own. Thank you for keeping this forum open that brings us all together!
Thanks for all the info! i have been given the raised eyebrow and told its viral every time I have told a rheumatologist about my swollen lymph nodes in my neck and my neck is so swollen i can barely swallow. I also get laryngitis with it too. I have been getting pain in my jaw which makes it difficult to open my jaw. So eating a large bite very is painful. It begins midday and calms down by nighttime. I get the night sweat drench sheet thing too for years before I was diagnosed with fevers and flulike symptoms monthly seems to follow hormonal pattern. Seem to be having more problems with my arches in my foot and the tendon assoc. and tendonitis in other areas as well not just my joints
All sound very familiar to me. I would wonder why it’s odd to have the lymph glands affected with an immune system disease. Maybe you can ask about that in a very diplomatic and pleasant way.
Kelly…Wow this posting of symptoms is fascinating! I have a list a mile long. I will try to shorten it up. :Major hair loss and breakage,Noids in my nose,Dizziness,Laryngitis,electric shocks in legs,Intense sweating bottom of skull and face sweating,Nodules between toes,loss of teeth,lumps in breasts,arms legs,Hemochromatosis(my body produces too much iron so i have to be tested every6 weeks and dump a pint!Can also make liver enzimes high!,major weakness,Dry Eyes(but my eyes tear all day)eye doc said my tears have no protiens.? Severe itching in right thigh,pain in my right rib,swollen hands and feet,sleep apneaI , and bee like stinging i know there is more i just cant remember everything! Thanks for this Kelly! As usual you come through for me! I wish the best for all RAW’S!
Dear Kelly,
Oh, does this website bring me back!!! When I was 19, I was diagnosed with RA after going from doc to doc describing a traveling pain that swelled my knee so my bellbottom pants were tight, and froze my elbow bent without any swelling or mark. It finally settled in my hip. I don’t know what was worse–limping around in terrible pain, or having doctors tell me there was nothing wrong and I should just think happy thoughts.
The good news is that I voraciously read everything I could about health, began meditating, went to a therapist for some emotional help, and changed my diet. I’m fine now almost 40 years later. No inflammation that I am aware of, and a very physically active life. It only got my hip which has been replaced.
I’m so glad you have this site!!! I’m so glad that you do so much to help others. My doctor ordered me out of his office when I told him the pills made me want to kill myself so I wouldn’t take them anymore. That suicide thinking wasn’t normal for me even with all the pain and limited life. When my health began improving, he wouldn’t see me to monitor my increasing health, and decreasing sedimentation rate. At any rate, lots has changed, and people like you empower us all. Thanks for your courage and willingness to help.
You’re so blessed to be symptom free. Thank the Lord.
Wish we’d hear more stories like yours.
I am now on ENBREL and some of the more bizzare symptoms have been:
1. numerous boils under the arms leading down each side of my upper torso. A few boils are appearing in between the legs (very painful and ugly to look at). These boils once subsided are leaving scars!
2. skin rashes which take a long time to heal
3. snoring (possibly linked to weight gain)
I had numerous terrible and shocking side effects from METOTREXATE which went away when finally I was taken off it.
Well, I’m not sure how strange is, but the most surprising symptom is my complete lack of energy on most days.
I was never super fit, but I walked a lot and could walk up stairs with no issues. Starting last fall, I had a hard time walking up one flight of stairs without getting winded from sheer lack of energy. Some days I have to take a step, take a break, take a step, take a break.
When I did get referred to a Rheumatologist and got officially diagnosed with RA, he explained that this was ‘normal’.
I was happy to learn I wasn’t just an out-of-shape blob, and that there was a reason for my completely lack of energy.
Kelly,
Thanks so much for starting this post. We have such strange symptoms with RA and it seems like our doctors are not always listening to us when we are trying to explain to them how we feel. It makes us feel like we are alone and the symptoms are “in our head.”
I have the usual dry, dry eyes that impair my vision and use lots of eye drops, fish oil tablets and humidifer on advice of opthamalogist (I’m diabetic so of course I see an opthamalogist). I have the achy, swollen joints, chills and fever, tenosynovitis in my fingers, horrible edema in my lower legs, feet and ankles, my hands and wrists burn when anything touches against them, and the list goes on. The newest one (and this is what made this post of yours so meaningful to me) is the stinging, burning, almost electrical shock feelings I get in my back (usually around my right shoulder blade. In fact, my primary care physician gave me two trigger point injections for that today when I complained about to him. I’m seeing the rheumatologist in two days and will get his take on this, too.
Anyway, it appears that RA can cause any number of weird and painful symptoms.
May God grant us all some blessed relief and a good sense of humor to deal with it all.
I get swelling on the back of my neck. It comes and goes. The last time I saw my Rheumy it was swollen and he said he usually sees this in people that have had RA for more than 10 years. I only been diagnosed 18 mths. I’m concerned what I read about the C1 and C2 spine swelling with RA. Any input would be appreciated! Thank you!!!
I also have the raspy voice a lot, popping/pressure in my ears as if I had just gotten off an airplane, dizziness, sore throat at times, and sometimes I will turn beat red in the face, neck and chest and feel very hot, and even be hot to the touch. My memory is also shot and I have trouble focusing at times… It’s like having “senior moments” at 30. I didn’t know that the raspy voice was a symptom of RA until I found this site… It’s nice to have an explanation for it.
The strangest ra symptom I have had was when it affected my eyesight. I woke up and the sight in my left eye was blurry, it was like light was broken and reflected back at me. I blinked, rubbed and hoped to sleep it away–I had no idea what was wrong. After two days of closing one eye to see clearly–I walked to a hospital with my four kids, one who I pushed in a stroller. I personally thought it was glacouma, but I was only 39. The doctor I saw was stumped until I told him my medical history included ra, he informed me that it could travel anywhere in the body, even your eye–who knew? It took about six months of treatment with eyedrops,and when that didn’t work, I ended up with a cordisone shot to my eyeball–it freaked me out but didn’t hurt–he numbed it first. It’s been 10 years, but if it happened again, at least I know what’s wrong. I hope this helps someone else that may have the same problem.
Valerie, I am in the same boat. However, I do have Hashimoto’s Thyroiditis, hypothyroid, and 6 thyroid nodules. Have you checked your thryoid. Make sure your doc checks thyroid peroxidase (antibodies). Arla
How about the inability to lose weight? I have been trying to lose weight for over six months and not a single pound has dropped even though I have been watching what I eat. Also, I have terrible nightmares.
I get a strange rash that comes and goes, sometimes around my joints. Mainly it’s arms and legs, sometimes the palms of my hands. Very oddly, it sometimes is in straight lines that looks like an animal scratched me!! Weird, weird, weird!
Both scary and reassuring to see all this. I have bad rib pain sometimes AND the electrical shocks. I also have extremely sore muscles, especially when I over do it–the forearms and particulary my underarms! THere are not swollen glands there, but that is what is feels like. My doc says none of this is RA related==that this is a “pain problem” or fibromyalgia.
I feel very lucky that I have a doctor who told me from the beginning that RA is a “systemic” disease and could cause all kinds of seemingly unrelated issues. He said it is somewhat of a misnomer to call it “arthritis” as it attacks everywhere, not just the joints.
That leads me to my question: Does anyone else sometimes wonder if they’re blaming RA when it’s not? I keep thinking that “being paranoid doesn’t mean they’re not out to get you” but I’m often trying to decide if it’s the RA that causing a symptom. I debate – is it the RA, a side effect of the medication, or am I actually getting sick. Will I miss an indication that something else is wrong (twisted ankle), or I’m ill (chills, heart palpitations, diarrhea), because I’m chalking it up to RA or the drugs. Anyone else worry about that?
Yes. This is a mental excercise I find myself doing almost daily!
That exact worry is twisting me into near panic many days because I’m having a lot of chest, shoulder, neck and jaw pain (add anxiety and you have all the classic symptoms of a heart attack); some strange findings on a CT scan have me waiting to see a respirologist and have a stress test and EKG. Hopefully what they’ve seen (small changes) will be minor and manageable. In the meantime I had a DETAILED discussion with my GP about how exactly to tell the difference between RA/costochondritis/soft tissue pain, and true heart symptoms. It was very helpful (she told me for example that a heart attack pain will be constant and not change with movement; this helps me rule it out often because my pain jabs and stabs when I move and is usually intermittent…) I won’t go into all the details of the chat because I don’t want to purport to provide advice; just that when you have some such strange symptom that could be the RA or could be something else worrisome disguising itself as part of the varied and fascinating RA symptoms, it might be helpful to come right out and say to your doctor, what if this is my heart/lungs/throat/diabetes (whatever it is that you need to rule out) and how exactly do I tell the difference? If there’s no way for you as the patient to tell the difference, ask for whatever test is necessary to rule it out. As Kelly has said elsewhere on the website, writing off symptoms to RA without further investigating is one of the causes of early death in RA patients. We have to do everything we can to ensure that symptoms don’t remain overlooked or investigated merely because they could be part of RA.
I don’t know if these symptoms would be classified as unusual, but here’s what I deal with frequently:
1. Losing my voice – usually happens in the late evening
2. Hands and feet swell – feet swell after walking around for 30 minutes or so
3. Sweating under my arms profusely, even if I’m cold
4. Sensitivity to cold – hands, feet, and nose are usually cold
5. Bruise easily – my legs look someone beat me with a stick
6. Weight loss – I’m down to 106.6, which is smaller than what I was in high school
7. No appetite – I have to force myself to eat
8. Hands open on their own and I drop stuff a lot
#4, #5, and #6 have increased since I started Orencia infusions back in February
Hey Valerie. I had weight loss issues as well. I literally watched every calorie that went into my body and tracked it and also was doing as much exercise as I could. It was crazy – there was no reason I shouldn’t have been losing weight. I ended up going in for my annual OBGYN and offhand mentioned my weight loss problem (along with exhaustion, joint swelling – that seemed more often that what my typical RA flare ups had been, vision problems, hair falling out, inability to sleep well, etc). She did a hormone test on me when she did some blood-work. Turns out in addition to RA, I’ve got the autoimmune version of hypothyroid. I got on additional medication for it (it’s a daily pill), but I feel so much better and I’m finally starting to lose weight. I feel your pain though – explore all your options though. It might be an additional illness outside of RA. It took me over a year to figure that out. Best of luck to you.
For a summer, I would have numbness down one complete side of my body. I could feel it in my scalp, roof of my mouth, across my hands, all the way down my body. I had a couple migraines when it happened too. Neurologist chalked it up to RA…
I had a recent change in my health saga. My Humira was increased to once a week nearly three months ago. Nothing else had changed in my life, my period was 65 days late. During the strange 65 days I visited my gyno to find out why I was late, after a pregnancy test, physical, and ultra-sound she found nothing wrong. After my period finally started it was not my normal characteristics. So I contacted my gyno and she wants to chalk this up to my increased Humira.
Any thoughts? Other than that my JRA has been in and out of remission over 14 years and I currently in remission since Fall of 2009.
Hi, have just been told about this site and its an eye opener.
I have had RA for 26 years now, symptoms vary but the thing im struggling with the most at the moment is fatigue, i could literally sleep all day (i dont of course) but the moment i get into bed at night i cant sleep. when i do drop off i wake so many times during the night i actually welcome the morning…im so tired i also have the brain fog and forget words all the time, i once forgot how to drive and my passenger had to tell me how to accelerate!! thats scary.
People dont understand that its not just the RA but the other symptoms that wear us down…i also have… trigger finger, my little finger died about 5 years ago and i still dont have much movement in it.i have stabbing feelings in my big toes and my hands often feel “sore”.
x tina.
Wow, I have read through every single one of these comments and I keep thinking “oh gosh, yes I get that”. I know my weirdnesses are related to the RA because I never had them before I had the RA (almost 4 years since DX now). And like so many have said, many times it’s not actually the RA that gets us, it’s the OTHER weirdnesses.
My current struggle is the fatigue. I work FT and by the time I get home, I usually have nothing left for my family. I need to find ways to combat the awful fatigue; it’s so much worse in the summer heat and humidity and we are expecting temps of 100+ where I live, and “feels like” temps near 110…
I am so glad I found this site; I will spend (and have spent) many hours here. Thank you for doing this site!
theresa
I have pain in both biceps in my arms quite often, whether I’ve exercised or not. Is this a sympton of RA?
that’s a good question. It’s certainly possible – when my shoulders have severe flare, the pain can radiate down my arm. Do you have shoulder or neck involvement? Have you asked a doctor yet? Please check back later in case someone else replies to your post.
I have the itchy, red hands and feet pads. At first there was no swelling but now there always is along with the itch. Also get the electrical shocks along feet, legs, back and head. Swollen feeling inside my throat often present, as are dry eyes and mouth. I am not on plaquenil. I was prescribed 1000mg daily of folic acid to counteract Mxt’t tendency to rob the system of this vitamin; also to prevent mouth ulcers. The brittle, ridged nails, hair thinning and dry skin on my part turned out to be hypothyroidism. The fatigue, skin and hair have improved since taking Synthroid for my thyroid. I’ve learned not to attribute all the symptoms I get to RA without first checking for other causes. I’ve learned a lot from this post, thank you to all who shared.
I have periodic difficulty swallowing which I have noticed comes on just before a flare.
Am a fairly new devotee to your website and can’t get enough info. Have become tired of doctors “what he doesn’t know won’t hert him” mentality. Your site gives me real answers. As to strange RA symptoms, whenever I finish eating anything I become extreemly fatigued especially in my chest–very weak, hard to breath. How wierd is this? Thanks so much for all you do.
Gee Mike – do you have any other digestive symptoms? I wonder what kind of doctor you’d ask. I googled your symptoms and several different things came up so maybe you should talk with your gp if it doesn’t go away.
Never thought of digestive problem–I’ll have that checked out. My biggest problem is the pain. My doctors are all paranoid about prescribing pain meds–they act like I’m paranoid. I’m so frustrated with the lack of compassion that I’ve pretty much given up on finding relief. Any suggestions?
Mike, you are the third person to comment about that in the last day. It is stunning how many of them will not treat the pain of one of the most painful destructive diseases known to man. The disease treatments are unsuccessful at eradicating symptoms in some people and only marginally successful in others, but they don’t want to treat the symptoms?
All I can say is that it’s wrong. And from what I can tell, it’s not the postion of the American College of Rheumatology as I interpret it from the articles that they send out via Twitter and their magazine, for example http://www.the-rheumatologist.org/details/article/1052277/Treat_Rheumatoid_Arthritis_to_Target.html and http://www.the-rheumatologist.org/details/article/1038745/Experts_Tackle_Tough_Pain_Challenges.html
Suggestions for you? You are in the same boat as many of us – I think I’ll post this as a topic soon & see what we can come up with. So far, I can think of 1) getting a second opinion from a new rheum doctor or 2) asking a gp or a pain specialist to treat you for the RA symptoms that your rheum doctor doesn’t (lots of patients do both of those). 3) Also, we should all stand and advocate together through the new Rheum Patient Foundation (RPF) to have this problem acknowledged & addressed.
Thanks Kelly. I read over the links you gave me and there is hope but I’m afraid I’ll be long gone by the time these ideas are implemented. My thought about our problem is this: we have a incurable disease, our lives (especially men) are shorter and we’re not any different than someone on Hospice care, (although not as short a time). We suffer too. Why shouldn’t we be treated the same–if we’re in pain, give us pain meds. We didn’t choose to have RA(your great quote). Why make us suffer. Why disrespect us. Why is our quality of life minimized. This life we have is all we have–why are we made to suffer.
Mike, did you realize that dysautonomia is associated with autoimmune disorders? You may possibly have POT syndrome? GI problems are common. I have the same types of problems. I am also autoimmune, though haven’t been dx’d with the more specific diseases yet. Been tested twice over the years due to hx of things like erythema nodosum, severe seborrhea from birth(had my head shaved at 2 yrs to get medication to scalp),psoriasis,sjogren’s symptoms, etc. My grandmother had RA. My mother’s ANA had turned positive just before she died, so her arthritis wasn’t confirmed as RA(she didn’t pursue it due to cancer). Apparently, my family is full of autoimmunity, as well as dysautonomia.
I’m 47. My blood work came back a year ago with RF elevated, +ANA, double stranded DNA abnormal, and CCP for severe RA. However, I thought I was symptomless. At least 4-5 years ago I was having symptoms, but not all at once: severe fatigue, a period of occasional night sweats, MRSA twice in the same year, occasional swollen lymph node under jawbone, cold nose, feet and fingertips, fluid rention, vertical nail ridges and mouth sores (even longer time frame), migraine headaches, dry eyes/mouth (even longer time frame). About 4 years ago, hair loss, laryngitis (couldn’t sing in church at times, and was told my my pulmonary doc to stop the advair), intermittent nausea symptoms. Couple of years ago, low Vit D. Last year, when the abnormal blood work came, a few months later, when I’d get out of bed in the am, my feet were achy on the balls of my feet, left big toe would bother me and eventually, I could touch on a joint to show where the pain was — the 2 toes’ joint next to it eventually. Scalp sensitivity; I itched my scalp, and it felt sunburned in one spot. Also, when I’d get hair off of my forehead with my fingertips, there was one area on forehead that was sensitive, too. About 3 mos ago, I felt with my tongue a little pinpoint like thing on the roof of my mouth. It got a little bigger, and the dentist took her metal probe and felt it. It had tension to it. Also, prepatellar edema as well as in the balls of my feet per MRI. I started Plaquenil on 2/15, and Methotrexate 8 weeks ago. Now, Plaquenil is at 400 mg, and Methotrexate 15 mg. I’m not symptom free, but not having any major symptoms Thank God! The little dot on the roof of my mouth has disappeared, so maybe it was a nodule. The rheum thinks that whatever other autoimmune issues are going on with me are protective with the RA as my symptoms should be worse based on severe RA with CCP. The rheum states that she isn’t too quick to go to a biologic, since it can induce a lupus flare. So far no erosions are seen in my feet or right knee! My father had late-onset RA, as far as I know, in is 70’s. No one else in my family with autoimmune issues.
Forgot to mention, at times lots of drainage. It was like someone turned the faucet on at night, so to speak.
Thank you, Kelly, for this wonderful web site and your willingness to help others!
I have many of the same symptoms others listed. I am a 64-year-old womn who was diagnosed about 2 years ago. I explain the electrical shock/stinging sensations this way: it’s as if someone has one of those voodoo dolls of me and is sticking pins in and out of it. Sometimes our symptoms are so difficult to explain to the doctor and to others.
I had never realised that i had some symptoms until i read them here..i also have ridged nails, and often get the choking sensation and i also find my voice is weak, if im in a crowd i cant raise my voice hardly at all.
xx tina
Tina, it sounds like some of the symptoms of cricoarytenoid joint RA. Be sure to mention the chohking sensation and the weak voice to your rheum doc AND to your PCP. It’s dangerous if you have to have general anesthesia – so if your rheum doc and/or PCP diagnose it, be sure to let any anesthesiologists and surgeons know about it.
The strangest thing I have experience w/ my RA is foot pain. I am a Yoga Instrutor and sometimes I have to smile through the pain. I also get painful skin bumps.
The rash that I’ve had for the past 9 weeks or so is finally fading, though not completely gone. Finally got into see a dermatologist today, of course when it’s about all gone. She thinks it’s either RA-related granulamotous related rash, or possibly due to some vitamins(or fillers in them) that I’d started. These were just B vitamins and magnesium and potassium. So will re-introduce the vitamins one at a time, every two weeks to see if that’s the cause. Otherwise I guess it’s RA related and she’s only prescribing some steroid cream. What I have left of the rash is much like the bumps I’ve had before, just more extensive on arms and legs.
Anyway, I did find the following article on RA-related cutaneous skin findings among other things:
http://www.ncbi.nlm.nih.gov/pubmed/12534797
That’s a good find, Chelsea. So many patients have rashes, jsut like it says that vary in nature & appearance. Too many tell me their rheum doc is unaware that RA often comes w/these rashes. I have my curiosity renewed to identify the one I get. Thanks. 😉
This is a great post because I have felt like I have become hypersensitive or a hypochondriac or something since being diagnosed with RA. My husband likes to say that I can attribute anything to RA, but I don’t think he understands the effects of an autoimmune disorder. I too have experienced swollen glands, hair loss, dizzy spells and forgetfulness. The symptoms that have surprised me are the fact that I suddenly developed allergic reaction to antibiotics that I have always taken and all I can take now is a z pack. I also have experienced really debilitating sciatica! I was diagnosed when I was 26 and having never had acne before I suddenly had cystic acne that due to the RA meds refuses to heal!! It’s a cosmetic thing and I feel like a jerk for mentioning it but I seem to always have a huge pimple on my face that looks like a parasitic twin and it makes me feel really self conscious.
It doesn’t make you a jerk to hate this – If the acne is from the prednisone, would a dermatologist be able to help you get it under control?
Ironically I am not on prednisone any longer so I cannot blame it on that it did make me fat and hairy though which was great for my self-esteem. On a side note I have noticed very rarely do patients or doctors discuss how RA effects their self-esteem. We hear about depression etc etc but not much on self-esteem-someone should write a book like The girlfriends guide to pregnancy to tell people all of the things the doctors don’t tell you, websites overlook and most people don’t want to share! I am taking Enbrel 50mg sure click once weekly. I blame the Enbrel for the slow healing and scarring though. I have noticed that if I get a cut or scrap it will leave a scar where it never would have before. When I mentioned it to my rheumy he sort of gave an internal eye roll and sighed like it was not important to him. I have tried every OTC acne medication and I think I am going to have to ask about it when I see the dermatologist along with the sweating. I take adderall for ADHD also so I sweat like ain’t nobodys business-eww!
I wonder if it’s a side effect of the adderall? I googled it & found several entries. The slow healing & scarring thing – for me, an extremely low dose of retin A has helped that – only used a couple times a week to help the face skin heal better. of course that’s up to you and your docs.
RetinA huh? I will have to ask about that next time and see if I can take it
Another weird thing, I don’t know if I would call it a symptom but change is that I had shingles before I was diagnosed and I have had it twice since then.
It does happen with RA more frequently – I don’t think the connection is known except that the immune system is involved. :/
Gosh, I’ve been thinking about this and reading all of these posts, and I think I probably do have a lot of these strange symptoms that never even thought to relate to RA! Especially the itchy fingers & toes!
Here’s what I’ve come up with for my strangest, though. This happened for the first time several weeks ago. I was out running errands or something when I noticed that I had something in my shoe – it felt like my shoelace had slid under my foot somehow. When I got home, I decided to take a look. My shoelaces were where they were supposed to be, and there was absolutely nothing in the bottom of my shoe. Then I looked at my foot – AHA! Swelling on the bottom of my foot made it feel like I was stepping on something. Then, it happened again shortly thereafter. I was sure that I had a pebble in my shoe — you know the feeling, it’s a very particular one. But again, it was just RA. I’ve had swelling in my feet previously, but usually it’s the ball of my foot, or the side or the heel… This particular symptom is a little farther back than the ball of my foot and the swelling is concentrated in this little area that gives me the exact same feeling as stepping on a rock whenever I take a step. While not so strange of a symptom in and of itself, the fact that it so much resembles another sensation that we’ve all had before is odd to me! And it seems to be recurring with more frequency now. Joy!
Hi Kelly and fellow RAWarrior’s I have the oppitsite of the folks with dry eyes. My tear all the time. Im constantly wiping my eyes. My rheumy says i have dry eyes. I said then why do mine water and she said there is not protein in my tears.When i wake up my eyes are almost glued together.Yucky! Dont quite understand but whats new? About the itching,my right thigh has itched for years. It seems that its not the skin but the tissue underneath it. I just scratch and rub it for years but all of a sudden it has gone away. Nothing in my regimen has changed. Wierd symtoms! Again Kelly thanks for what you do.If i hadnt found this site by accident i would still be feeling like a hyprochondirac!