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
I am posting regarding MEMORY LOSS and Enbrel (injections). I have had RA for 4 years and was on MTX for the first 3 years with too many side effects to mention (majority of them seen in just about every post above + some). Due to the number of side effects including depression my Dr.
decided to change the treatment to Enbrel. Enbrel has changed my life (really)! I forget I have RA and am only reminded at injection time. However I have a new side effect and thats MEMORY LOSS. I didnt link it at first – but as the last year has progressed the memory loss is becoming more and more obvious and a little worrying. Im trying to see if anyone else has this side effect and if any medical professional recognizes this as a side effect. i would love to hear from you. thanks.
Hi all, I was diagnosed 2 yrs ago with RA. Since then, I have seen and felt my body go down hill. I don’t have insurance so this poses a problem to getting adequate care. I have a problem with fevers now, my back and neck hurts everyday as does my wrists, hands, ankles and feet. For years, I have had very warm hands and feet, to the point I have to run them under cool water for temporary relief. I never understood why but now see it could’ve been an early symptom? I have noticed that I’m losing more hair, faster. I’m always tired, some days extremely fatigued. Everyday is a surprise, I never know how my day is going to be. Because of this, I have been unable to work. Just taking a shower is exhausting. Anyway, thanks, to who ever reads this, for letting me whine! Nice to know there are others who understand!
Okay, I went to an eye specialist and I have Muscular Pucker of the left eye and yes I will need surgery. Next appt is in Dec if my eye does not get worse in the mean time. This diagnosis makes me very nervous. I have not even researched the diagnosis. And if you know me I am always looking for answers.
So PLEASE EVERYONE…..FOLLOW UP ON THOSE TRIED FEEELING EYES…
I’ve had no. 3 … brief painful electric shock like pain but until I read this figured it was something else causing this. Hesitate to state I’ve not had these in a while as I know soon as I get this written and posted, it will return;))
I’d already posted earlier about the brief electric shock like pains (mostly in finger tips and toes) then I began reading some other posts. After reading through all the weird symptoms of people have noted they’ve experienced, realize I’ve had so many of them but never connected them at RA at all. These aren’t all the time and sometimes occur just once or twice and disappear. I do have the itching especially of the soles of the feet, and the shin area, scratching so much they’d bleed. Thankfully I don’t have really long nails though apparently they’re sharp:) Also relate to ears feeling full, like they get on an airplane flight. Anyone have any vertigo? I’ve had a few episodes over the past year and have figured it was sinus related but now that I read all these odd symptoms wonder if both the sinus and vertigo might be odd RA symptoms. I also get the painful areas on the top of my head that shift in location. Immediately one thinks the worse when something like this occurs…. No RA literature I’ve ever read has mentioned the bizarro symptoms that can accompany RA.
There are so many things to read on this wonderful website that I’ve just gotten to this one about weird RA symptoms. I have numb toes at times and, of course, the rashes, “lumpy” joints and the ever-popular inability to heal quickly from any kind of minor scrapes, cuts or burns. I am blessed that I do not have fevers. I wanted to comment on the dry eyes symptoms. One of my “side” things is Sjogren’s Syndrome, diagnosed at about the same time as my RA. I went to my ophthalmologist because of Plaquenil usage and he diagnosed Sjogren’s. I used Restasis eyedrops daily and it has helped, except when my eye allergies kick in…then I also use Alaway. My Sjogren’s also involves dry mouth and dryness in my “lady parts.” I haven’t found much help for my dry mouth…tried Biotene mouthwash and spray and gum. My dry mouth/Sjogren’s has also caused loss of tooth enamel and I had to have laser treatments to cover up where the enamel was lost. My dentist tried his best to put in an insurance claim for the treatment but the insurance company didn’t agree. (Gotta love those insurance companies) Love this website!!
Thanks, Mary. This disease affects us in so many ways no one could imagine!
I have had so many weirdo things going on:
1. Night sweats- had hysterectomy 10 yrs ago & have been on Premarin ever since
2. Swollen lymph glands bilaterally on neck with palpable nodules as well for about 4 yrs that 2 drs said were “normal”
3. Very tender underarms & ribs with occasional palpable nodules underarms (varies which one-sometimes both) that I can’t even bear the thought of a bra, much less wear one!
4. Initial dx was made upon first bony nodule growth on 1st rib next to sternum at top of mediastum- Had dx of chostochrondritis for a bit until labs came back positive on all accounts for RAD
5. Itchy & red palms & bottom of feet
6. feeling like something is in my shoe when there isn’t & it HURTS
7. random scalp sensitivity when i touch my head – or my hair! Ridged nails also
8. Is it electric shocks or is it just really sharp pains from my shoulder/elbow down to my fingertips like yesterday that lasted for hours & hours?? Also happens from wrist to fingers, knee to ankles, ankles to toes, hips to knees- you get the idea
9. dry itchy eyes I’ve always attributed to my allergies; of course, it seems my allergies during the normal fall/spring seasons have lasted longer & longer & now morph into one whole year
with a never ending sinus infection!
And I find I’m more sensitive to things like laundry detergent & more likely to have a reaction to a medication now. I’m now allergic to Aleve- yay me lol!
10. The brain fog & not being able to speak in a continuous sentence bc I either forget the word or I can’t seem to get the word out properly- I feel like my IQ has been lowered by 100 points- (no more straight A’s ?!)
11. My knee likes to give out on me now more often – & that’s if the ole hips aren’t screaming enough already to make me sit & then they still don’t stop screaming-
12. Weird little nodules that have appeared on my index finger & hurt like mad when anything touched them at all- I had to wear a finger brace to protect it for about a month then they just finally went away- Still don’t know what they were bc they started out itchy, then went to painful with a quickness! They also appeared on my middle & ring fingers but didn’t progress further.
Ah, one more thing- I have the pain between my jaw & ear on the right side. There is a very tender nodule near the TMJ & I do have to be careful about chewing, swallowing bc it can become locked in place/click out of joint easily. I had to wear a retainer/night guard when I was 15. Dentist said it was bc I chewed gum all the time – sounds really logical now LOL
Thanks for putting this post up Kelly! I wish I had found your site years ago 🙂 Prayers & blessings to all warriors
:stars:
Totally forgot to mention the 1/2 inch palpable nodule on the side of my shin (really??) yea- I have had pain in my shins sooo- I’ve no idea but it’s weird to me!
Thanks RAD for the brain fog that allowed me to add an additional post 🙂
:peace: :heart: :hugs:
Hi, Danice – Are you the Danice that’s in the general Lawrenceville GA area? We have the beginning of a support group, and I’d love for you to join us! Check us out here:
http://www.meetup.com/Lawrenceville-RA-Meetup-Group/
And, yes, I’ve had some of the symptoms you mention. Sometimes I think my rheum doc can hardly believe what all is going on with me!
Cheerio!
Elizabeth
Burn zones on my hands that hurt like fire! Always on the white
Part of the hands
I am writing these because it makes me feel better…just to get it out there and say, yes, this is what I’m dealing with, outside of the fun of stiffness/fatigue/brain fog…
* A rash on both arms/hands that is non-itchy, non-inflamed…just there.
* Burning feet. (Pretty sure I know what this one is)
* Electric shocks. (Yep, my hands and feet. I’ve seen others post that, so it’s nice to see I’m not alone.)
* Muscle pain, not just the joint.
* Heel pain, like I’ve been jumping on just my heels for hours. (No, I haven’t been, trust me.)
* Isolated “spots” of pain, like a vicious sting.
* Itching
* Coughing, hoarseness, laryngitis (read up on this one, too)
* Insomnia at night (after being fatigued all day, I don’t understand this one at all.)
* Rotating pain (my rheumy told me RA likes to settle down in favorite joints. Mine doesn’t. Mine likes to travel. I get to play the “which joint(s) is going to bother me today game.)
* Headaches (probably medication related)
So much of what I have I want to automatically assume it’s RA or RA related…and then I think, no wait, maybe it’s not…and maybe it’s in my head.
Thanks for confirming that some of it’s not.
Hugs,
Jennifer
Since the beginning of this year I have noticed the skin on my sides from my knees to my arm pits and across my belly and butt is tendor. When I first really noticed it, it was painful to pull my pants on in the morning. Now it is only mildly tendor to pressure except my hips to knees that have not really let up and often hurts to lay on. My RD says this isn’t any pattern he recognizes and left it at that.
I wonder if it is a nerve issue or if the skin itself is irritated so that a dermatologist might be able to tell you something. If it continues and a dermatologist can’t say anything, I might try a neurologist next. I’m not sure whether it will be considered RA related or not (sometimes they aren’t sure); but either way, I know you need an answer.
I’ve been reading all the comments and have many of the symptoms mentioned here. I wanted to know if anyone that’s experienced the fatigue has problems falling asleep when they shouldn’t? That didn’t come out right. Let me explain: When I first get up in the morning, I’ll often fall back to sleep sitting at my desk. I never know when it’s going to happen.I won’t feel “sleepy” but will just be asleep and the next thing I know I’m waking up (I think) but then I’m asleep again. it can go on for a couple of hours sometimes when it’s at it’s worst. What’s bad is that I don’t realize I’m sleepy. And when I wake up after nodding off, I usually think it’s just been a second or two until I look at my computer clock and see that it’s been 30 mins… I’ve woken up a couple of times because I’ve dumped a cup of coffee on myself. It’s really weird.
I’m not on any meds for the RA and although I take narcotics for severe pain, this happens even when I haven’t taken anything for almost 24 hours so it’s not the meds; plus I’ve been taking the meds for 12 years and this has only been happening for the last year and seems worse when the RA is flaring. I’d say it doesn’t happen when the RA isn’t flaring but I haven’t had any time when it wasn’t flaring yet so don’t know. It also doesn’t matter how much sleep I’ve had that night before. Like I said, weird.
The other symptom I’ve had that really weird goes along with the dry mouth. (I have Sjögren’s and RA) My mouth gets very dry, especially at night, but during the day, sometimes I’ll drool! What’s up with that??? It doesn’t make any sense at all! I never know when it’s going to happen and have no control over it. It’s really embarrassing!
has anyone had either of these symptoms or am I really from another planet altogether?
I’m not a Dr., but worked with medical staff and I work in addictions counseling. You may want to make sure your liver functions are good. Sometimes if your liver is not functioning properly, narcotics are unable to process fast enough and it stays in your system longer, then if you take another dose, it may be too much which may be causing the sleepiness. Just a thought.
I just wanted to let others know that the sleeping problem is from the RA. I saw my RA doctor Wednesday and he explained it. Also I discovered the drooling is from the Sjögren’s. He said some patients experience drooling like I do and others have a problem with looking like they’re crying all of a sudden when they’re not. He said that both are instances of our body trying to repair itself. It knows that everything is too dry and it’s trying to fix itself. Of course it doesn’t succeed, but, it’s trying. So at least I know what’s causing those things and don’t feel so weird anymore.
Hi,
I know this is an older post but I was very intrigued by it. I’m not “self-diagnosing” but have been trying to research some symptoms that I have because I got a hard knot on the left side of my neck looked at several months ago and was told it was just a swollen lymph node. It has never gone done, and it is hard as a rock! I have one on the right side of my neck at the hairline also. CT scan didn’t reveal anything and the doctor dismissed it. Since then I have had a stiff neck, burning sensation in the middle of my back off and on, and my fingers ache and hurt quite a bit. When I try to open containers it aches up to my elbows. My fingers and feet are always very cold. They also have spells of being tingly or numb. My shoulders and upper back ache quite a bit and it makes it difficult to pick up my younger children. I have had issues with dry mouth and swollen salivary glands as well. My grandmother suffered from very severe RA and I have wondered if my symptoms could be due to RA and if I should insist on testing?
I also have swallowing issues and a constant lump-in-throat feeling, which I have heard is due to GERD, which can be a symptom of RA? I know I have some symptoms due to stress. I don’t have health insurance so I have been putting off going to a doctor due to cost, but I really think I have to get checked out. Did anyone have similar symptoms before being diagnosed?
Also, I’d like to add that I have dry, itchy eyes and heel pain/tenderness. The skin there is very dry also. I have a lot of trouble moving around in the morning and my whole body aches. It hurts to put lotion on my hands! Seems to bother my wrists a lot too.
I’m only 30, but I know my grandma was diagnosed around her mid-30s, and RA was very vicious to her body, to the point she couldn’t use her hands, they were curved into fists. I don’t know much about RA except what it did to her.
Hi Sara,
Most of the posts are still read by searchers & people also comment – it’s never old unless RA gets cured. From what I know, there are several diagnoses that could be related to some of the symptoms you describe. It could be RA because of family history – that should be checked out – whatever it is you need to know. If you need to get a good workup without insurance one idea is to get to a university hospital. I have done this more than once & they often have a sliding fee scale that you can apply for in the finance office before being seen. If you’re uninsured, they look at how much money you make to decide what you pay for services. And you tend to get very good care in such places. Other than that, I might save up to see a good internist & tell him you only want the tests that will really tell you something since you have to pay for them full price. Try to get a friend to recommend a rheumatologist in your area who will really listen – and I know it’s harder than it sounds. I wish I could make it easier.
Thanks for responding. I’m definitely going to look into going to a university/resident practice. You aren’t the first to suggest that, and I have also heard that the doctors there take better care of you.
It seems that its hard to find a doctor anymore that actually cares and isn’t trying to rush you out of the door. Regardless of my symptoms and what it turns out to be, I’d like more than a brush-off! I find it hard to believe that it’s nothing at all. I would at least like some general bloodwork done or something. Thanks again, I hope to get this all figured out soon.
Thank you so much for replying – I had chemo about 10 years ago and I believe I got RA as a result of chemo – age 60. My doctors keep doing tests because of swollen lymph glands mainly because they don’t understand RA – gotten 3 cat scans and too many mammagrams the past year and no cancer – just swollen lymph glands – I don’t like all the radiation I am getting but they are like pit bull dogs. Where can I go on your web site to start a discussion on this matter. Finally found a good RA doctor took 5 years. Thank you for helping all of us RA patients. Mary Lenzi mjlenzi@comcast.net
Kelly – have you had any experience with getting a mammogram and have swollen lymph nodes in your armpit – I am a breast cancer survivor and my doctors go over board with my swollen lymph nodes – how can I get some information concerning this problem. If you can help me I would be very appreciative. Mary Lenzi mjlenzi@comcast.net
I’ve had a few weird symptoms before I was ever diagnosed that I think were related to RAD:
-As a kid I had terrible eczema on the back of my legs.
-On a school trip, after walking around all day my ankles swelled to an enormous size
-I couple times I got mysterious bruises on my legs. They were dark dark purple and the size of a baseball. They would show up the soft fleshy part of my calf so I couldn’t figure out how I got them.
-My whole life my nails have always had vertical lines running along them. I thought it was just normal till after I was diagnosed and found out it’s a symptom of RAD.
Since I’ve been diagnosed:
-My finger tips get very sore and hard to the touch. Has anyone else had this? It’s like my fingers are swollen at the very tip but there’s no joint there so I don’t get it.
-I also get small lumps deep under my skin on my fingers. According to Dr. Google it could be a form of eczema that’s under the skin and happens on fingers. It’s sometimes treated with methltrexate…coincidence or connection to RAD? hmmm
-Also I’ve always had issues with acne, but when I take biologics my skin clears up.
-Tendons!!! I’ve developed trigger finger on one hand and I can feel bumps on other tendons in my hands. My doctor said they were my tendons because they move when I move the joint. I firmly believe RAD attacks the tendons as much as the synovial lining.
-Oh and I’ve had teeth problems. Despite all of my brushing and flossing I’ve still managed to develop gingivitis.
That’s it for now but I’m sure I’ll discover new ones.
Melissa, I too have had bumps under my skin on my fingers that were diagnosed as rheumatoid nodules.
Hi Melissa!
I was diagnosed with RA 2 1/2 yrs ago. I too have had those vertical lines/ridges on my nails for as long as I can remember. It seems as though they have gotten worse in the last few years though. I have always been self conscience about this but could never find what caused it. Perhaps now at long last, I have!
My hair has been as straighter than a stick all my life — uesed to get perms, etc. About 2 years ago at age 65, it started turning curly — some parts curlier than others! The back is so frizzy curly that my hairdresser suggested getting it straightened. I’ve been on Enbrel, Methotrexate, Folic acid, etc., for about 5 years. Anyone heard of this? My RA doc says it’s not RA-related but who knows?!
I’ve worked for a Chiropractor 25+ years now; as soon as I started getting joint pain in my fingers, in about ’99, I went to a Rheumatolgist. Yep…so I started on supplemental joint support and inflammation treatments; been using such ever since (about 12 years). Don’t have a lot of joint pain…my problem is the malaise…like down for the count for days, or weeks. My symptoms onset with oncoming weather fronts. I think it’s because I live in the Plains and there’s nothing between me and storm fronts but a few buffalo and a barbed wire fence or two. Weakness, nausea, fatigue, low-grade fevers that wax and wane and weird hormonal effects that mimic PMS–almost like panic attack(had a full hystorectomy in ’05, so no menstrual complications anymore-yay). Extrodinary emotional aggitation triggers or exacerbates any symptoms already present. My reaction to my MIL’s sudden death nearly killed me. Oh, and heart stuff…bad,bad attacks sometimes manifest with heat-like feelings in the area around my heart. I’ve never met anyone else for whom the malaise manifested as a primary symptom.
Hi Reit. Fatigue and malaise were my first symptoms, followed by ocular manifestations. It was cyclical back then. I would feel SO tired and sick for a few days and then my eyes would become inflamed… It would last about a month and then go away for a month, and then come back again. This lasted for a year and nobody diagnosed me because my rheumatoid factor was normal.
To this day, fatigue and malaise are my primary complaints. I can deal with the pain most of the time now that I’m on Mtx injections. But the fatigue and malaise are debilitating. I can relate to your symptoms. I also have chest pain which was diagnosed as costochondritis, but I think it’s pleuritic.
I’m glad to see so many others on here that have the almost unbearable Hot flashes. I will be sitting in my chair and all of a sudden I start feeling like I am on fire, my skin gets red and very uncomfortable. I have had menopausal hot flashes and these are far worse. I sometimes have to go outside in the cold to cool back down. It almost seems like these Hot flashes exhaust me. They have been more frequent the past few weeks. Also my face keeps breaking out with painful acne like bumps.
Hi All!
I’ve had RA for about 17 yrs. I’m sure someone has mentioned my symptoms, but I would like some feedback from any of you that have large inflammed lumps in the back of my head. They itch and hurt terribly. brushing my hair is so uncomfortable. My RA doctor thinks its all the nerve ending coming from my neck tendons and occiptol bone. Could be, but I think I actually have RA in the skull where the bones meet. Can anyone relate?
I also have terrible itching anywhere there is inflammation (arms, hands etc)
I’m always horse if i talk more than a couple of minutes. Can barely sing anymore.
And…my eyes… getting worse & worse. Hurt & blurred vision. Eye doctor says its just dry eyes, but…it’s more than that!
So…any comments for me? Thanks
Be blessed today..
Linda
Linda I can relate. As far as the eyes goes mine got to the point where I have tear duct plugs put in. Dry eye can get so bad that you actually have blurred vision for brief periods at a time. I had to pull over at times and use my eye drops and wait for relief. Keeping your eyes moist is important. As for your skull I keep getting sebacous cysts. One at the back of my head got to be the size of a golf ball. So far I have had about 7 cysts removed. They get to a certain point and they become very painful.
I have severely dry eyes to the point that it causes small erosions on my corneas. Ugh. I have to be careful to use eye ointment at night and steroid drops during the day (I also have acleritis and iritis). My vision keeps getting worse and worse, and it’s scary. I’ve been diagnosed with RA for less than a year, but my eye symptoms started long before diagnosis.
Thanks for your comments.
I do have eye plugs. I go from very dry to very watery. I just read a great article and video on eye problems with RA. Plan on giving it to my eye doctor. Hope he’s not offended, but I do suspect more than just dry eyes. (hope not)
As far as my head.. these are wide lumps under the surface, not unlike i have on my forearm. not sure if they’d be classified as cysts.
Anyone else care to comment?
Hi Linda, I have had the lumps on my head also and believe they are rheumatoid nodules, just like the ones I use to get at pressure points. I too find that areas that are inflamed can be painful but also very itchy at times.The rheumatoid nodules that i ahd hane almost diappeared since I began orencia infusions.
Thanks for you comments. I haven’t had any biologics in almost 2 years due to minor infections, but none of them had any effect for me anyway except for SOME with Retuxin. I am scheduled to start the new oral one..Xeljanz very soon. Hoping I see improvements in all areas. I’ve regressed in general considerably in the last year or so.
Love you guys. And you too Kelly. You are all such a blessing.
Linda
This is one strange symptom I have and I don’t even know if it’s related to RD. The pads of my fingers will start to itch, then get red and swell up. It doesn’t happen to all of my fingers at once, and doesn’t happen too terribly often. Right now it’s my index finger on my left hand, but that’s the only finger at this time. It will happen to my toes too. RD will do the strangest things sometimes!!
I have pain and inflammation and lumps in the back of my head.
My rheumatalogists thinks its just pain radiating from my neck….but i think I have RA in the scull. Anyone else have these symptoms? It’s so painful…even to brush my hair.
hiiiii I’ve had R.A for 3year and I am facing a very strange problem . my half face is fatter and I dn’t no why
is dis is a symptom of RA.
I was put on methotrexate to deal with my RA. From the time I started I was sick! I took it once a week and the day after was awful, got gradually better until the day before I was due to take the next dose I felt pretty good. I was on the methotrexate for 6 weeks before I ended up in the stroke ward of our local hospital! I had got to work and sat down with my head on my desk because I felt so bad. When I lifted my head I could not speak properly (severe stammer) and I could not stand. I spent three days in the stroke ward undergoing multiple scans and tests before I was diagnosed with a chemical imbalance in my brain. I was put on Arava (luckily I have a lot of hair!)and was pretty good for a couple of years. In February this year I had a major flare and was put on an anti-inflammatory, within days I developed a tremor through my whole body but most noticeable in my hands. I was taken off the med but the tremors continued and about a month later I developed a stammer. My rheumatologist has thrown up her hands and referred me back to the neurologist. Due for an MRI in 10 days…
I have been working on RA diagnosis for a couple of years. I was diagnosed in November 2012, however the meds really worked. I started having weird symptoms while on arava my hands and feet would get little purple spots on them and then would sting really bad and then turn really red.,my rheumatologist said I had a pinched nerve. I thought really? So I went for a second opinion And this rheumatologist is doing a much better work up. I go back on Tuesday for plan of treatment.
My question is ,is the stinging in hands and feet ,the redness of hands and feet ,frequent thrush, laryngitis multiple times a year,migraines ,related to RA? I haven’t really gotten any answers. I feel very crazy right now. All I want to do is cry. I have a family and a full time job as a nurse and I’m so scared . The pain is getting worse . I’m so tired all of the time. Sometimes I feel like people don’t believe me. I want to feel,good again. Thanks for answers!! :
Hi Melissa. I was officially diagnosed November 2, 2012. I’m right there with you – feeling crazy and wanting to cry. I’m also a nurse and I work full time. I was working in a regional level 1 trauma center but it became physically impossible, even before diagnosis, due to the overwhelming fatigue. So I transited into surgical stepdown and that became too much for me. Now, less than a year after diagnosis, I took a desk job and even that… Well… I’m deeply frightened now. I’m finding that even a desk job is just too much. By the time I get home from an 8 hour day there’s not one ounce of energy left in me. I also have red palms, brain fog, electric radicular pain – neck to hands.
I don’t have the answers I seek. My rheumy often rolls his eyes and looks at me like I’m crazy. I recently called him and told him that the fatigue has become profoundly overwhelming, and his response was, “Your RA is controlled because your inflammatory markers are ok, so your fatigue isn’t caused by the RA.” Really? What’s causing it then? It’s so bad that my quality of life has been drastically altered for the worse! Does anybody else here experience overwhelming fatigue with a normal sed rate and CRP? I get short of breath and my heart pounds when I’m barely active and that’s very scary. I feel confused, frightened, discouraged, and like my rheumy doesn’t take me seriously.
My fingers and toes are twisting too, and he says that’s “normal!” Why don’t they listen??? People know their own bodies! My fingers and toes were not twisted before diagnosis so why is this normal now? When I told him the ophthamologist says that my anterior uveitis is caused by RA, he scoffed and said, “People blame everything on RA!” I find myself wondering if I have rheumatic vasculitis?
So you’re not alone. I’m frightened and feel like crying. I used to do an hour of advanced yoga 4-5 days a week, hike in the mountains, and ride my horses, all while working 12-14 hour shifts in a very busy trauma center… Now it’s all I can do just to drag myself out of bed and work an 8 hours day at a desk.
Angela, Hi. I can relate to so many of your symptoms, like you I spent several years “figuring out” what was wrong. I had several “misses” as it relates to diagnosis and several wrong treatments. Through all of that I had many doctors who treated me like I was crazy…and did not continue with those doctors. So, along with one of my misdiagnosis’ I went to an Internal Med doc, I was not having problems at the time I went to establish a relationship while I was “well”. I did not need med refill, nothing. I told him my story and explained how I had been treated. Over a period of 3 years, he has gotten me through multiple really tough times, never once has he treated me like I was experiencing/describing bizarre symptoms etc. A little over a year ago, my blood work finally told the RA story. Today, he manages my symptoms “with me” listens and advises, treats when appropriate. I say all of this because I would not change and go to a rheumatologist. Take some time and find a doc who will listen to you and respect you. I think a good doc will be able to manage your disease intelligently while being more understanding. Best of luck. Jan
Hi Jan, and thanks for sharing. I know what you’re talking about as far as having a good primary doc goes. It was my family doctor who finally found out what was wrong. I sustained several tick bites riding through tall grass on my horses and started having a fever, headache, severe joint pain and stiffness… I thought I had Lymes but he had the presence of mind to test me for RA because he knew about the scleritis and my history of fatigue. He was the one who found it (a high rheumatoid factor) and referred me to a rheumatologist.
He’s been a blessing in my life since this hit full force with a vengeance, and he picks up the slack where my rheumy drops off. He found my low vitamin D level too. He really listens and he ~cares~ which is extremely rare BUT, much to my chagrin, he isn’t comfortable prescribing Mtx or managing RA.
About 5 years before being diagnosed with RA, I started having horrible episodes with intermittent hives and rashes. My physician thought I was allergic to something but no cause was ever identified.
Three years before being diagnosed with Ra, I started having extreme fatigue which was shortly followed by flank pain and scleritis. It started as nodular scleritis. These episodes would flare about once every 3 months and I could always tell when my eyes were going to become inflamed because I would have profound fatigue as a warning sign.
About a year before being diagnosed I developed microhematuria – blood in my urine that cannot be seen by the naked eye. This continued for an entire year, but after I started taking Mtx injections, this stopped.
I’ve been diagnosed for less than a year now, and I have severe dry eyes (to the point of affecting my corneas), episcleritis and iritis (anterior uveitis) which seems to be becoming chronic (lasting longer than 8 weeks) rather than cyclical episodes as it was before. I also have horrible fatigue.
The hives have stopped BUT I have the strangest problem mainly on my hands and feet. I get these blistery type little bumps that itch like crazy, and the seem to run linear paths bilaterally. After scratching the blisters pop, the skin hardens and then flakes off. I have NO clue what this is. Has anyone else experienced this?
I also have what seems to be peripheral neuropathy because I have persistent burning in my toes.
I’ve also had microhematuria ever since the RA became active, which for me was almost 5 years ago now. In fact, the only symptom you’ve mentioned that I don’t have is the blisters on your hands and feet. So you’re definitely not alone!
I did not realize that microhematuria was related to RA, I too have it. Hmm. Do you know where that leads? My guess is that any persistent symptom will lead to something else.
THIS IS WHAT I SENT MY FAMILY……..FROM THE OLDEST SISTER… who looks like nothing is wrong with her (me). GOD BLESS EVERYONE.
What is Rheumatoid Arthritis (RA)?
RA is an autoimmune disorder that causes inflammation of the lining of the joints. The body tissue is mistakenly attacked by its own immune system. RA may also affect the skin, eyes, lungs, heart, blood, or nerves. Rheumatoid arthritis is a chronic disorder, meaning that although there may be occasional symptom-free periods, the disease can worsen over time and may never go away.
Rheumatoid arthritis (RA) is a long-term disease that leads to inflammation of the joints and surrounding tissues. It can also affect other organs.
Rheumatoid arthritis can affect nearly every part of the body. Complications may include:
• Damage to the lung tissue (rheumatoid lung)
• Increased risk of hardening of the arteries
• Spinal injury when the neck bones become damaged
• Inflammation of the blood vessels (rheumatoid vasculitis), which can lead to skin, nerve, heart, and brain problems
Swelling and inflammation of the outer lining of the heart (pericarditis) and of the heart muscle (myocarditis), which can lead to congestive heart failure
RA Symptoms
Joint inflammation from RA comes with pain, warmth, and swelling. The inflammation is typically symmetrical, occurring on both sides of the body at the same time (such as the wrists, knees, or hands). Other symptoms of RA include joint stiffness, particularly in the morning or after periods of inactivity; ongoing fatigue, and low-grade fever. Symptoms typically develop gradually over years, but can come on rapidly for some people.
Inflammation of the lining of the joints can destroy cartilage and bone, causing deformity of the joints. As the condition progresses, joints can develop considerable pain and loss of function.
Fatigue is common with RA, making it difficult to feel energetic, so short periods of rest are important to reduce active joint inflammation and pain and to fight fatigue.
Teach Your Family About RA
Sometimes it’s hard for others to understand how you can feel so bad when you look healthy. Teaching those close to you about RA will help them understand the disease and how best to support you.
To educate friends and family members about RA:
• Take them to doctor’s appointments with you.
• Give them written materials from your doctor or organizations like the Arthritis Foundation or National Institute of Arthritis and Musculoskeletal and Skin Diseases.
Invite them to attend meetings of the Arthritis Foundation Arthritis Self-Help Program or other support groups with you.
I hate the thought of attributing every little strange symptom to my RA, but my doctor has even confirmed one (or is he just guessing?!) I have these two strange little pimple-like bumps on my face, sitting exactly on my jaw-line. I had them for months before I realized they were not going away. They never come to a head. I never had acne as a teenager but thought that it may be adult acne. When I showed my doctor, he told me that this was from my RA. I was wondering if anyone else has experienced this. Funny thing is that I noticed that after a trip to the beach and the pool this summer, they smoothed out! I had gotten very tan and my skin got smoother! Now that we’re having some cloudy, rainy days I noticed that my tan is fading and the bumps are coming back! Could this really be an RA symptom?
Doreen, if the doctor gave you a name for it, that would help you learn more about it & see what others’ look like. Can you ask what he calls it?
Doreen, I’ve recently gotten those bumps on my face too. I thought at first they were pimples that hadn’t come to a head yet, and they’re barely visible…but I could feel them. I used to have very severe acne as a child and even though I haven’t had acne since I was 20 (I’m now 57)any bump on my face, no matter how little really bothers me, so I noticed it right away. Like you said, it didn’t go away which also bugged me even though it didn’t get worse either lol. I was having a flare so figured it might be from the RA, but just “had” to try and get rid of it. Trust me, don’t try and “pop” it LOL It does no good and only makes it quite visible until it eventually goes back to just how it was before. I don’t know if it’ll go away as I seem to be in a perpetual flare. Now when I say I’m having a “flare”, I just mean it’s worse then usual, and it’s usually pretty bad. Oh well. Such is life. I’ll ask my RA doc about it when I see him again in a few weeks, although I’m certain it’s from either the RA or Sjögren’s. One reason I’m certain is because at the same time as those showed up, I also got some nodules on my fingers around the knuckles. What’s a few more bumps, right? I’ll let you know if he gives me a specific name for them though.
I get those little white “pimples” I always thought they were calcium deposits. I’m not sure what they really are, but I get them when I take my calcium supplements. If I stop taking the supplements…they go away, it takes a few months, but they do. When they go away, they don’t exactly “pop”, but they do come out. A year or so ago, I had about 5 or 6 of these pimples on my face..on my eyelids (those really bothered me), cheeks and around my nose..and I ran out of my calcium and I kept forgetting to get more, then the pimples started just coming out. I finally bought more calcium and when I started taking them the pimples came back a month or two later They were driving me crazy because my daughter was getting married in the summer..so I stopped again, and they went away again. I really should be taking the calcium, so I will start now that the wedding is over and I guess I’ll see if they come back again
I was diagnosed 2 1/2 yrs. ago. I didn’t know anyone who had RA. Nothing that I read online or was told by my new rheumatologist was the least bit encouraging.
About a year into this strange journey, I began to have symptoms that were not listed anywhere as being RA related. Somehow I just knew (hoped & prayed) that there had to be a link, otherwise I was facing yet another serious medical issue. I began to experience very sharp pains that seemed to be within my bones. They occurred randomly, mostly in the evenings, and were very painful. The duration of which could be anywhere from a few seconds to as much as ten+ minutes. I searched the internet for weeks for a connection to RA. I talked to my rheumatologist during several appointments but she did not know of that being an RA symptom. I even emailed Kelly to ask if any of her readers had experienced this pain. She also replied that it was nothing she had heard about. It wasn’t until I went for my new patient visit at a family physician that I got my answer. My first appointment there was with a physician’s assistant who by coincidance had worked in an RA office for a few years. As I went over my medical history and current problems, she had what would be my answer!! She ordered blood work to check for vitamin D deficiency. Studies are showing a strong link between this deficiency and the onset of RA, plus some RA medications can further deplete this vitamin.
Sure enough, blood tests came back positive. I began taking supplements and almost immediatly the pain subsided.
Thank God and my new hero!
I am new to this site and have recently been told my blood work shows “borderline” RA. I had originally gone to the doctor for my hand and arm hurting so bad I wanted to chop it off. This came on suddenly and for no reason. That pain started in late August. Now the pain is not so severe but now other parts are starting to hurt and ache and feel weird. My hands and feet itch so bad I thought I was having a reaction to lotion, soap, laundry detergent, anything. Changing all that has done nothing to stop the itching. Also tingling, “pin prick” feelings in the palms of my hands and bottom of my feet and my neck is so stiff I can never get it to feel loose. The worst and most confusing part….did anyone have issues with energy levels? I used to work 12-14 hours a day. Now, I can sleep 8-10 hrs a night and still dragging butt the next day, even dozing off while driving around sometimes. When I get home I am so exhausted all I have the energy for is the couch, not cooking or cleaning or yard work….nothing. I hesitate to tell my dr (even though she would understand 100%) all these things because in my mind I’m just being lazy and complaining. Does any of this sound familiar or is it just me? Any suggestions, tips, ideas?
Thank you for this site. It has answered lots of questions for me!
Now to get my co-workers to understand what’s going on.
One more thing. This started late Aug of this year and seems like over night has gotten so much worse. Is that normal too?
I am waiting for a definitive diagnosis…just had sonograms of hands and wrists and feet. Also had x-rays of those along with more blood work. My rheumatologist is pretty sure I have RA. I have suffered with the symptoms for about 15 years now, but without swelling, he would never diagnose me. I too have so very many of the symptoms people listed here. Just to name a few because I am sure I will forget many. I am a 48 year old female- I have Hashimotos Thyroiditis, a nodule on my thyroid (diagnosis 18 years ago), chronic sinus problems, at times daily headaches, rosacia, redness and heat in face, neck and chest, dry eyes (but tearing at times), dry mouth, ringing in ears, itching inside ears, sometimes my cheeks will itch for no reason, severe itchiness in lower legs with no rash and skin doesn’t appear to be dry, dryness of feet, foot pain, ankle and foot swelling on one side, plantar facitis, bone spur in foot, extreme fatigue, waking up in the middle of the night but being so tired upon going to bed that I don’t recall falling asleep. I fight staying awake at times, brain fog, memory problems, stiffness after waking up or sitting for period of time, numbness and tingling in arms and hands and feet, vertigo, degenerative disc disease in my neck, osteoarthritis, depression, allergies, gerd, swollen and painful tongue and taste buds (burning mouth syndrome?), severely anemic (but currently under control with vitamins and vitamin B shots every month, high cholesterol, high blood pressure, chest pains, asthma, shortness of breath. I could go on and on with all the symptoms I have had all these years. So very glad to see other people have weird symptoms like me! My b/f thinks I am a hypochondriac because I have so many problems. My rheumatologist says he believes I have atypical RA in that it is not symmetrical and it travels throughout my body on a daily basis. Anybody else have atypical symptoms like that? Oh and I have a positive RH factor in my blood for some time now.
Oh, also have difficulty losing weight, if anything I gain it easily and severe muscle pain and weakness quite often, and knees locking up when I am sleeping cause sever pain.
having read 28,000 comments here, thousands of emails & about a half a million posts on social media – I’d say your symptoms are not very atypical in my opinion.
Here are 2 articles on this topic – with lots of comments from people with RD. https://www.rawarrior.com/7-atypical-rheumatoid-arthritis-effects-are-actually-typical/
https://www.rawarrior.com/is-there-typical-rheumatoid-arthritis/
I love the post. I thought I was going loopy! I have boils under my arms and on my inner thighs.
I have short focus time, I can’t remember anything and have begun lugging around a notebook.
I have severe pain in both of my knees, I have had a synovectomy in my right wrist and my left knee to help alleviate some of the symptoms and the swelling.
I am on heavy doses of pain medicine but would prefer to be on an anti inflammatory.
The methotrexate caused my liver to fail – I was hospitalized for over 2 weeks until it had healed itself.
I have less test and have begun adding pepper to almost everything to add flavor.
I have restless leg syndrome when not in a flare up.
The dry mouth is horrible! I’ve tried different tooth paste and mouth wash, but I need to keep gum or sugar free candy in my mouth to alleviate the sensation.
Recently diagnosed with cataracts because of the steroid use but the Prednisone is the only anti inflamitory that seems to work.
I have had autoimmune hepatitis, pancreatitis, endometriosis, ongoing gastric issues and my dr stands behind a diagnosis of RA. There is going to be a second opinion soon as I am currently being evaluated for a lesion found in my small intestine. I been on Arava and Remicade but have to keep going off due to high liver counts and low white count. My GI Dr is very concerned about this and the meds.
I have 1) and 3). I thought I was the only one experiencing these weird symptoms. I am 20 years old and I was diagnosed with RA when I was 15.
Strange symptoms
Shortness of breath
Seizures (quick sensations as if an earthquake occurred leaving me with a feeling of disorientation)
Chest pains (
Extensive testing showed no heart health issues)
Soles of feet filled with synovial fluid and small lump in center of sole that comes and goes
Stinging when synovial fluid is leaking especially right knee
One toe (not big toe) suddenly swells, turns bright red & becomes painful for no reason
Horrendous allergies complete with constant sore throat, swollen lymph glands on neck, swollen inner ear canal often leading to dizziness, runny nose, food gets stuck, post nasal drip
There are ties between ra and allergy
Right clavicle bulges out
Huge swollen trapezius especially close to neck making me feel as if I can’t hold up my head
Kidney pain
Skin hyper pigmentation
Headaches
Osteoporosis
Idiopathic thigh & butt pain
Huge amounts of synovial fluid under the skin legs & arms which gives a whitish tint and pushes against the skin giving discomfort & swelling especially from knees to soles is one big slab of synovitis. I have been repeatedly told OA caused all this. Only recently did I insist on a RA text when fatigue overwhelmed me.
Low blood pressure
Heart murmur
Low hdl cholesterol (probably due to vegetarian diet)
Sudden onset of Hashimoto’s thyroiditis
One week after one toe swelled entire body swelled as if I had gout everywhere. I has some keel flex and took them which helped.
My parents & siblings all have OA but none of them displayed the extra symptoms I have which made me suspect RA
Susceptible to flus or to feeling as if I have a flu.
I forgot to mention that recently I find my eyes get extremely blurry. For the past year my eyes would throb and look swollen. My eye doctor asked if I had Sjorgens but at the time I was unaware that I had RA so I said no. She suspected something.
I also experience depression for no reason which comes & goes. I am currently only taking Synthroid for hypothyroidism so RA meds are not the cause of any of my symptoms. I began to suspect RA or Lupus when I was in my fifties. I am now 61 years old.
I’m 26 and I just got a clinical diagnosis of RA about 3 weeks ago. My symptoms started entirely overnight only 5 weeks ago. I’m very scared I may have something happening besides RA as I have STRANGE symptoms that I can’t imagine being related. They are all sudden, and I have a new one at least twice a week so far.
I had some of these BIZARRE things start even before the first week was over but I felt dismissed by the doctor and I need to vent without being looked at like I’m nuts. I had a traumatic event 3 years ago and I have PTSD. They see that on my chart and then that’s all they see. The only thing I’ve been to the doctor for in the past 3 years is PTSD/anxiety/depression and a few normal infections,ect. In other words, I’ve never mentioned odd things before, so why do they assume I’m just hysterical, a hypochondriac, or imagining things?
I went through a trauma. I’m not insane. I’m not imagining things and I know my body.
I’ll try to keep it short and if anyone knows about this kind of thing, I would love to know.
First of all, my dad has severe RA and I quickly recognized the onset. I woke up with both of my hands red, swollen, and I could not bend my fingers at all for a while. I had (and have) terrible pain in my hands, wrists, and especially my fingers.
Literally in just a day I got hard knots on the sides of my finger joints. They are VERY noticeable. The doctor did agree about the nodules (I guess because she could see them), but she brushed off everything else. That was 3 weeks ago, so now she will definitely think I’m crazy. I almost don’t want to tell any doctor now because of how they made me feel. I know how crazy this stuff sounds, but it really is happening. Here goes.
Day 1- Normal onset symptoms.
OK, WEIRD starts on day 6- Odd pressure all throughout my chest, throat, and face. My knees, toes, and shoulders start hurting. BAD.
Day 7- I suddenly can’t project my voice and gradually my voice becomes a bit raspy.
Day 8- I get a cough, my voice goes hoarse, and I start having trouble getting my breath. Here’s when it gets really weird. Later that night ALL my joints starting popping. Everywhere. Over and over. At least 200 times within a few hours. When I got home(I’m 3rd shift), my breathing was getting shorter very quickly. The pressure was so intense I made an emergency appointment with the on-call doctor.
She said my hands did look like RA but my other joints shouldn’t be involved so early, particularly because I’m so young. She said my voice was probably being strained too much at work.(We have to yell across the building all night. It was never an issue before though.) She said the pressure was probably anxiety. ( I KNOW what that feels like. This was and is very different. It is the most bizarre, hard to describe sensation Iv’e ever had.) She gave me an NSAID and made me a follow-up in a week.
When I came back a week later, I had lost my voice, had pain everywhere, and I couldn’t breathe. Every moment I had some degree of wheezing. It would worsen and decrease throughout the day. It was rattly like. She said I probably had an infection and prescribed me an antibiotic. It did not help. She referred me to a rheumatologist for the RA pain/nodules.
Since then, my symptoms just keep piling on and get weirder and weirder. Many of them, people can actually see. I have obviously visible changes in my skin and nails.
My hands and feet “wrinkle up” in random spells everyday for NO reason. I have actually “lost” my fingerprints because of lines running through them. My skin literally sags around my fingers sometimes. I can push my cheeks in and they stay that way for a few minutes. I can literally shape my face at times.
There are dented lines across my nails. Not up and down like normal lines, across in the same shape as the tips.
My middle and pointer fingers are no longer straight at all. They bend outward toward the pinkies.
I have awful numbness and painful tingling in my hands and feet. There is no pattern to it. Sometimes just the hands, just the feet, all 4, or, on 1 occasion it was just my left hand and left foot for several hours. It doesn’t matter if I’m sitting, standing, walking or laying down. It still happens in spells at different times in the day.
Then, a week ago my throat started ticking. Yes. Ticking. Like a freaking clock. This has happened 3 times for about an hour span each time.
My breathing and voice issues have gradually improved but I continue to have all of these issues. There is so much pressure in my throat, face, and chest sometimes it’s ridiculous.
About 3 days ago my ears started popping 100’s of times a day now.
Most recently, for about 2 days now, I have a wrong perception of my surroundings. I suddenly have a “backwards” sense of direction. I have always on instinct turned at the end of my store aisles to go a certain way. (e.g. I’m on 7 and need to go 6 so I walk to the end and turn accordingly) I’m going the wrong way! Every time! I intend to go from 5 to 4, but walk toward 6! I have to look or I will get it wrong! Even if I focus on it! Then, I’m wanting to take a box up the aisle, but I walk down the aisle! I know the layout of my store perfectly, why am I doing this? My sense of space is flipped!
I’m terrified something is wrong with my brain now! Is all of this related to RA? Did it trigger something else too? I’m starting to wonder if I’m slowly dying from something. My doctors totally dismissed me even after hearing my lungs. This is all too much of a coincidence to different issues. This all started within the last 5 weeks.
Not to mention my mental state has gone from bad to worse. I can’t remember anything! Iv’e lost my wallet, my keys, left groceries in a cart and left, ect. I sat in the floor for 2 hours trying to put away some groceries because I kept forgetting what I was doing. Something makes me cry everyday. Even stupid things.
I’m a mom with a 4 year old little boy and I really am beginning to fear I won’t see him grow up. My insurance is horrible and unless a doctor feels a test is necessary, they won’t pay. I don’t even know what test I would need. Is this seriously all RA? If so, then it shouldn’t be called RA. It should be RD, D as in disease. My dad never had this stuff and he can’t even walk sometimes. I can still walk. What is going on? No way is this stuff normal. Any advice or stories about similar stuff would be SO MUCH appreciated! …Sorry about the book I wrote. (this is still super summarized)
I have boil on my elbow and very painful, Do you know if it is as a result of the medication i am on, if yes what antibiotic is nomally use.
Thank
Omotayo
Had something similar about 18 months ago. Both elbows swelled up with fluid. My Family Dr drained them (and had the fluid tested with a “normal” result) then the left one got infected and took forever (6 months) to heal. She (my regular Dr) stated that it was more than likely RA related.
I was diagnosed 4 years ago with sever RA .Most of my Symtims are nature of the beast. Others are strange indeed.The most troubling one is everything I smell or taste seems to be filtered through a sickly sweet odor.
This symptom might be a side effect of medication. Maybe? I did have a bad taste in my mouth years due to methotrexate injections.
I had the heel pain, as well. But after suffering with it for more than a year, I did further research and felt it went along with Plantar Fascitis (sp) and after seeing my reg. doc it was confirmed. Simple stretching exercises (standing with toes on the edge of a step and stretching the heels downward) helped in as little as a week. What a relief it has been for me. Hope it’s the same for you.
My nightmare started Over Five Years Ago and let’s speak about Progressive Symptoms..first I noticed itchy and dryness of my Skin/Eyes plus dry patches upon my face with Red/purple in color patches size vary on my legs all this would come and go but the patches on legs red/purple would go from being light colored to leaving marks in those same areas in which the red/purple marks would first appeared ..oh let me Not forget the Horrible pain, swelling,warm to touch, hot then cold feeling with left side upper flank pain and bloated fullness now added/not able to eat without feeling full as if I ate two plates of food! Electricity feelings that has came several times within this period Especially if I am Stressed or Very upset about something ! Always Try to remain Calm it Helps With( Fares) NOW.. My next Symptom is my Brain and me dropping things.. I have had Brain Fog and memory loss not to mention my Headaches,numbness,needles like feeling in hands, arms, feet, toes! My Symptoms aren’t getting Any better I have been Forced to pay attention to My RA it’s not one day that I am Not in pain, numbness,Swolleness! Now my tongue feels swollen with when I drink feeling like I am choking of course I has the swallowing test came back Normal Now Please Note I have been to the Best Doctor’s test Blood test liver levels So high they thought I had renal failure (a full body scan done all normal ) Now I rarely Drink liquor NOW the Doctor’s all thought I was lieing (RA) WELL when my final set of Blood tests came back high RA Factor’s no lupus or STD’s the Doctor’s then Realized I wasn’t Crazy Because at first they kept asking me am I depressed ..NO but most definitely headed in that direction! My teeth/JAW oh my PAIN also my mouth feels twisted oh by the way I had Several teeth extracted Because of the Extreme pain What I thought the XRay was Crazy and revealing Negative Films(RA) Again Daily I deal with jaw/teeth pain also! I Been Admitted to Hospital Four times over this period of
I am 63 and have RA and am unable to work. When I was working I was on MTX, prednisone and plaqinal; I was nauseous every day, had extreme fatigue, very blurry vision, memory loss and was in constant pain. Eventually had to have surgery on my mouth, 6 teeth removed and 70 percent bone loss! But what I found amazing was that prior to surgery I went off my RA drugs and most of my symptoms went away except the pain; after surgery I was given opiate pain meds and the RA pain went away. I was so glad to have two weeks without pain!!! I felt so good, I started swimming everyday and thought I was going to be normal again. But unfortunately it did not last because I stopped the pain meds. Once those stopped I went back on my RA drugs minus the Mxt but now on Enbrel and all my pain came back, and now I can barely walk. I am convinced it’s the drugs not the RA itself that causes most of the issues we face. Now my lower lip swells up, my palms itch, my pelvic area has electrical shock type feelings and I have extreme fatigue. I saw my RA doctor and told him how much pain I am having and he told me to take Tylenol – really? It just shows that doctors do not understand the pain level that we feel. Before RA never even took aspirins now I am being treated with drugs that don’t cure me but give me side effects and do not address the pain. I am on a vegan diet for inflammation, which I believe has helped a great deal. We need to join together to address the pain issue it is terrible to make people suffer.
I get pain in my groin. Sometimes at the same time I am. Unable to move my legs. My husband kinda levers me out of bed. Then I take tiny steps till it subsides. More often is is the pain with without problems moving my legs.
Finally a place I can come to and talk about my symptoms with people who understand. I often feel like people don’t understand this disease, and think I am exaggerating my symptoms. It is so very frustrating. They think it’s just a bit of swelling no big deal right. If only they could walk a mile in our shoe, or hell even for ten miutes. Just today I was saying to my brother that I couldn’t wait to see my RA doc. It has been 3months not being on Humira or Methotrexate due to ongoing infections and strange blistering rashes on both hands. Through this time I have not been able to get pain relief. I am told to take Asprin or Tylenol Arthritis. That’s what I have been taking if it was working I wouldn’t be calling trying to bump my appointment up by two months. (Much like Mike I feel like they treat me like a drug addict when I really have a serious chronic condition.) My brother who has back problems, says, yeah well imagine how I feel? Any pain is unfortunate and I mean no offence by this, but I told him I wish that it was only one part of body that hurt. With RA it was all over, not to mention all the other listed symptoms of RA. He was just like yeah right. Maybe I should let him read these comments then he would understand. Thank you so much for giving us a place to relate to one another. Makes me feel less crazy 🙂
I haven’t been diagnosed with RA because my primary doctor says it regular arthritis (looking for a new one). I tend to have some of the above syptoms and well as others like: when I scratch any part of my body, I get a small rash looking spots where I just scratched. In the winter I get the scaly looking rash that burns when you put anything on or touch it with anything. If anyone knows about these please help me. Thanks
I will keep it brief. My diagnosis has switched back and forth. As a child I had a heart murmur, dizzy spells, black outs. 1990s began with swollen fingers most of time, unable to swim more than few yards as arms would hurt felt swollen. 2002 pregnant with hip pain, 2003 pregnant with hip pain, baby born ankles swollen and painful, this happened a few times and unbearable so went to doctor. To add I had tonsil problems for years and back problem began in 1989. 2004 ankles, hips and other joints were effected and a diagnosis of osteoporosis. Eventually diagnosed RA. Now to add all joints effected, dry eyes, itching, hips painful and swollen left side worst and knee. Fingers are bad but my thumb began clicking and one day it clucked and was pointing downwards, stuck like this the pain was excruciating and I thought I had dislocated it at middle joint, I almost went to hospital but summoned up the courage to bend it back myself. It has been stuck pointing straight out for years and does not bend unless I accidentally knock it or when I use it to aid in chores such as writing or cutting food it flips down and just like a dislocation is stuck until I bend it back again. The joint pain is like a massive tooth ache and at its worst in winter. Every joint including my neck which means I can’t look up or down for more than a minute or it will swell and I have major head ache, dizziness and cannot move my head even a fraction as spinning and feel sick. I believe it does come on by itself at times but can be brought on by the looking up or down. This usually lasts for three days or so. Lymph node in neck swollen and fluid spread round my face and was put down to teeth but dental treatment did not work and it rapidly got worse, was admitted to hospital and put on iv antibiotics for a week. Whilst in hospital I complained about a massive head ache but was not aware of my neck issues at this point, doctors thought I was just moaning as they gave me paracetamol and I still laid there in agony. I have a lump in my neck that never goes away since then. I get severe chest pain at times which is scary as feels like heart attack but is not and is not heart burn. A the much experience of heart burn as medication damaged my stomach I can say quite categorically it is not heart burn, last time I went to doctor and checks proved not heart attack so definitely the chest pain associated with RA. Last night it had me up and could not lay down again until it passed. Condition bad at moment and attending a programme at hospital of intense physio, hydrotherapy, and yoga etc but on Thursday was asked to do half days as getting so bad.mornings and evenings are worst making it hard to dress. Fatigue and all other things you peeps have mentioned are my symptoms apart from one that I have not heard yet. My glands in my breast swell just the same and are so painful that if I wear a bra I am practically peeling it off at night. I am struggling with this so bad at the moment and my autistic boys and my third son, it is so hard. I have a cleaning lady but whilst at hospital daily unable to collect her and she does not drive so she cannot get here because we are rural and no buss or train routes near. I hope this sheds light on symptoms for others and that some of you may benefit from this knowledge. Tricia.
i was reading everyones post and i have all this stuff too and my fingers and toes hurt,tingle, all the time,,so days are worst than others but today was really bad,,i think its because rain is on the way,,rain is pain for all of us,,my memory is getting so bad here lately too,,we are ra warrories and have a fight to get though normal daily things that not everyone understands,,i hav to take naps,,but it seems when i put pressure on my fingers and toes it helps,,dont know why,,i am too on mtx and humira,,predosone,folic acid,,leuvover,,blood pressure medication to widen my veins because of bad circulation,,plus pain meds,,sleeping pills,,feels like my life is pills now,,i get so tired of taking all this medication,,ok i am though whinning now,,hope everyone has a goodnights sleep,,bless each and everyone of you,,remember we are strong
I had nightly low grade fevers, severe fatigue,some general aching and my feet hurt in the mornings. I had had major surgery with a difficult recovery in Feb 2003, and started feeling the fevers in September. I went back to the doctor thinking I was still having problems post-op, and the morning of my appointment my knee was swollen and warm. My grandfather had severe RA, so I was tested. My labs were only slightly positive for the RA, but over the next month or so i developed nodules below my elbows and my fingers , knees and shoulders became inflamed. I started MTX in Dec. of 2003, along with Vioxx, which worked so well but made my B/P go up. Over the years I have been on enbrel, humira, actemra and a clinical trial combining rituxan and enbrel. I have been off biologics for a little over a year and am in a remission for the first time. I only have a little swelling in my knuckles and feet. I am also off MTX as it made me anemic to the point of blood transfusions and IV iron. I also have cardiac problems that my rheuemy and cardiologist both feel are due to the RA, for which i take beta blockers and Cardizem. I have more problems with the cardiac issues than the joints now.I take ibuprophen 600 mg 3 times a day. During the past month or so, I have been getting ore fatigued , I have had some low grade fevers at night and am being monitored. I also have fibromyalgia and Sjogrens (which remained pretty much the same even with the RA symptoms abating) I did manage to lose 85 pounds over the last 18 months, which has helped, hard to keep it off when you can’t exercise much (I get short of breath and my heart rate zooms over 120 with minimal exertion..a cardiac ablation will be in my future.)
actually, my doctor found my RA diagnose because of the rashes in my eyes, they come periodically and they area a symptom of Stil syndrome. right now i’m having a really bad case, looks like someone punched me in both eyes, and really hurts and itches. i also have those electric pains on my legs. and latelly i’ve been experiencing some pain in my throat, it feels like i’m choking on something and i’m always trying to clear my throat
I’ve had the night sweats, red flushing, fevers and hot flashes since I was 29. I’m 41 now. My rheumy has always asked me about night sweats and night fevers so it is related at least initially in my case. Now it’s partly RA and partly peri-menopause.
I have dry eyes, skin, scalp, private areas, mouth. Mild glaucoma, dying teeth, lung nodules and lung disease. Trigger finger, tendons that tear of you look at them meanly (I tore one two weeks ago simply floating in a pool). Permanent voice damage, choking, heart issues, swollen clavicles, nodules on most joints including the bottoms of the metatarsals. Ridged brittle nails. I’ve noticed my hearing isn’t as good as it used to be. I also have severe chemical and scent allergies. I’m suddenly developing food allergies to foods that I’ve eaten all my life. This disease is such a joy isn’t it!
I haven’t been diagnosed yet but have so many of the symptoms. Hot burning face. Most of my joints hurt pretty bad. Dry mouth, swollen taste buds(Dentist thinks is autoimmune) dry eyes, positive speckled ANA test 3x that docs won’t believe. All other tests are negative. The list goes on. It runs in my family. Both RA and other autoimmune illnesses. Docs have me on percocette for the pain and basically tell me it an over reactive pain response and stress. A lot of the joint pain came on suddenly. On day I was working out hard the next I couldn’t walk because my hip hurt so bad. My other joints followed quickly. I’m so frustrated with being blown off buy Rheumies,GP’s and the pain clinic. What does it take to get someone to believe that I know my body. I had a doc years ago tell me that I was borderline lupus when I saw him for my burning face that turned beat read and was sweating constant.It was excruciating. He was a bit of a loopy doc so I didn’t believe him. I wish I would have back then. I’m just going downhill physically now with nowhere left to turn for help. I’m in Canada. My eyesight went from needing a very mild script for distance to not being able to read anything without bifocals in less than a year. I have the dry mouth, I had an eye doc tell me that I have dry eyes. They burn. I look like I’m crying when it happens. Anyway thanks to all of you for sharing it helps. I wish all of you the best.
I’ve had RA … For 15 years …. I started with it at 38 ….. It’s been comforting reading all the posts on this site …. I suffer so many strange symptoms. There are times when feel a constant hypochondriac. I’m blessed in the fact, I have very little joint damage …. I can relate to so much on here …. Maybe I should be thankful I’m not alone after all x