Community Views: Unusual and Frustrating RA Symptoms

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3 min read

Those of us who have rheumatoid arthritis (RA) tend to be quite familiar with the standard laundry list of symptoms associated with this condition, like pain, joint swelling, and fatigue.

Living with these symptoms every day can be quite frustrating. There are also a lot of other symptoms we experience that aren’t discussed as often, yet their impact can be significant.

We asked members of our Facebook community to tell us what their most unusual or frustrating symptoms are. Here’s what they had to say!

Extreme fatigue and difficulty sleeping

I’m tired all the time.
I have trouble with sleeplessness.
I can’t sleep.
I’m exhausted but I can’t sleep well.

Vision or eye problems

I have issues with my retinas and floaters in my eyes.
I have dry eyes.
I see lights when I turn my head.
I have eye pain.
My eyes are sore, watery, and blurry.
My eye sockets hurt and I have very blurry vision at times.
I have inflammation in my eyes.

Emotional or thinking problems

I struggle with depression.
I hate that I never know how I’m going to feel.
I feel like I have brain fog.
I hate how unpredictable it is.
People just don’t understand, and they think I’m lazy or that I’m acting like a child.
It’s so difficult not knowing how I’m going to feel from day to day.
I really lack mental clarity.
People assume I’m lazy because I move slowly.

Issues with my mouth and throat

I struggle with dry mouth.
I have trouble swallowing.
My eyes, mouth, and ears are very dry.
My throat is always sore.
I have trouble with my jaw feeling tight and painful.
When I talk, my jaw gets tight.

Feelings of having a flu or fever

I feel like I have the flu, 24 hours a day, 7 days a week.
I get fevers.
Every day, it’s like I have a horrible case of the flu.

Limited mobility or grip loss

I hate that I can’t function like healthy people do.
I can’t hold on to things and it drives me crazy.
I can’t walk well.
My toes and ankles just ache.
My dexterity has deteriorated.
My balance is just off.
My legs get numb.
Walking is so painful.
I wish I could wear shoes without my feet hurting.

Problems with internal organs

I have an increased heart rate.
I have awful heart palpitations and I become breathless very easily.
I have both heart and lung disease as a direct result of my RA.
I have lung issues, including ground-glass opacity and costochondritis.
I have dizzy spells and pass out.
I have a lot of chest pain.
My vitamin D levels are low.
I have nodules on my lungs.
My white blood cell count is high.
I get a lot of bruising.
I have significant hair loss.

Issues with joints or connective tissue that aren’t normally associated with RA

My collarbone is constantly in pain.
I have severe tendinitis in both of my forearms.
I have tendinitis in my ankles.
I have carpal tunnel syndrome.
I have RA of the lumbar spine.
I have sacroiliac joint dysfunction.
I have inflammation and swelling after just 20 minutes of work or being exposed to heat.

Other unusual symptoms

My skin becomes blackened in different areas, which looks like bruising.
I have skin nodules.
I get bruising and bleeding under my skin when I’m flaring.
I have nodules in my feet that create callouses.
I get frequent bug bites.
I have certain food intolerances.

What about you? What frustrating or unusual symptoms do you experience from your RA? Please share with us in the comments!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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robertandkelly Member

I have a bunch of the symptoms you described. I also get bursitis and I have white areas on my skin. Little white spots where the pigment is gone.
polo Member

I had a tooth ache that was becoming very painful. I went to my dentist, who sent me to a specialist in root canals. Neither could see anything where the pain was happening. But decided to finally do a root canal on the tooth that was hurting. The pain did not go away after the root canal, but was still in the same tooth. Started to have pain in my right ear, same right side as pain in tooth. Appointment with ENT specialist, he said it was all being caused by
freckles5 Member

Ever since I was diagnosed with jra at the age of 12 I've always gotten a neon red splotchy skin rash mainly on my upper back shoulders chest arms scalp and face. to this day I still get it and it seems to be getting worse along with jaw pain, extreme eye pain, elbow pain, Raynaud's disease, history of fainting and dizziness, chest pains ( heart is healthiest one Drs have seen btw ) over sensitive skin fits to the point where my scalp and skin will feel like there are on fire. My dermatologist gave me something to help with my scalp it helps sometimes but not all the time. I had just started taking humira once weekly from biweekly and the next day I had stroke like symptoms. My eyes and head are still in excruciating pain and they aren't conected to one another and migrain medication or 800 my of ibuprofen aren't my head pain. I'm having slight issues with talking and forming sentences still it comes and goes , I'm having nuerological symptoms still too just not near as bad as they were that day I had stroke like symptoms after upping dose of humira . Also since then my heart rate hasn't dropped below 110. Still haven't figured out why I had those symptoms that day and why I'm still having them on and off. There's more new and weord symptoms everyday but Im going to the neurologist upon my rheumatologist request. So until I see the neurologist and since that day three weeks ago I have not had my next dosage of humira instructed by my rheumatologist he's doig process of elimination. The Plaquinel does help keep the rashes to somewhat minimum so I look normal sometimes. lol found that out quick.i thought they were kinda bad when I was on the plaquinel... I also went through a period of hari thining and hair loss until my dr put me on biotin and I haven't had any issues since. I drink the correct amount of water daily eat good food and exercise. I take hot baths to help with swelling and it works for about 30min-1hr then my body only swells up to half the size it was before the bath. I have always had trouble falling asleep Its really bad now. I get low grade fevers a lot so I'm chilling during a flare up, ever since the day after upping my humira my appetite has been gone. I have to force myself to eat. I never have any issues eating ! I tested positive one time for lupus got diagnosed with early stages but because lupus mimics just about every auto immune disease it's hard to diagnose . So the last 6 times they've twsted me for it it's come back negative so they took it out of my diagnosis completely . I'm tired of being in pain and having to throw a smile on and cry inside because every move hurts and I'm having weird pains and symptoms come and go and it's a little scary not knowing what's wrong and no one can seem to figure it out and having to wait to go to someone who can. fingers crossed monday I get a sense of direction so I can go back to the normal me! Emotionally this whole event has drained me and my family and friends have noticed it and they see through the smile and laugh out on to try not to be a downer. They know something's wrong and hate it for me.
1. turtlemom Member
 
 I feel for you. This VILE disease just makes life horrible!
2. lisaburton Member
 
 Hi megan I feel for you and know exactly what you are going threw.most of my symptoms are the same. Wish they could help me more and find me the right answers. I am also suffering and feel like I'm dying some days 🙁 I only got diagnosed nearly a year ago. Its a trial an error trying to find the right medication that works. Keep strong and stay positive. X
turtlemom Member

Ever since my shoulders began to be involved, the skin of my forearms feel like it is burning if cool air moves over it. Even when my arms are warm, when my husband rubs my arms it feels like my arms are burning - even on fire! I hate this because he is trying to be so comforting and sweet. I like his caring, and dislike telling him that it hurts. Usually I just ignore it or just ask him to rub in a different place. I have opioid-induced constipation because of the hydrocodone I take. But laxatives, even in small doses, cause cramping and diarrhea. I go back and forth between constipation and diarrhea. Also, my "methotrexate belly" has led to my being unable to digest green leafy veggies - they go through undigested, and cause cramping and diarrhea. I suppose these aren't really RA Symptoms, but I have them because I am taking medications for RA. Stupid disease!
1. katdeere Member
 
 Gosh it's good for me to hear all this because it's how I feel thanks for posting. I too hate the disease
2. 55rainey Member
 
 use a stool softener every day if on pain killers - a laxative will cause a lot of cramps. also a really good probiotic is important as well- helps body rid itself of candida and deal with inflammation from gluten and sugars etc.
slm4032 Member

I also have a lot of the "unusual and frustrating" symptoms described. I try to explain them to my rheumatologist and she just looks at me. I have had tendinitis of the elbow for months now, it is very painful to lift anything over 5 lb. Hip bursitis is also a constant issue and the most frustrating symptom is my balance is just off at times. I fall or stumble very easily. Sometimes I have so many of these symptoms that I sometimes wonder if I am crazy. This is the only article I have ever read even discussing these symptoms.
1. katdeere Member
 
 Isn't it wonderful to know we aren't alone. I am having a terrible time with balance issues and getting myself moving I can walk easily if I use a walker, and I even can walk a mile. Without it I can hardly walk across the room. I don't know why I feel like a failure if I have to use a walker.
mawmawsusan Member

I have so many of these same symptoms. I never knew they were related to rheumatoid arthritis !
1. rhpass Member
 
 I am always relieved to know I am not alone in my crazy weird symptoms!
lisaburton Member

I have a lot of these symptoms and feel so poorly to. On different meds now so hopefully this will help me. One hr I'm not to bad then the nx hr I can be so poorly again. Hope everyone can relate to this . Keep positive 😀
louv1r Member

I have a big problem with severe gastric reflux when i take prednisone. So i trade pain and swelling for burning in my throat and i can't lay down because the gastric juice gurgles up into my mouth. Pleasant -- NOT
1. farmerbarb Member
 
 I had the same symptoms for a couple of years and ignored them. Finally it was so agonising that I almost stopped eating. When my GP noticed that I was losing weight and asked me what was happening and told him about the awful heartburn and reflux, he sent e for a gastroscopy. the results were not good. Due to me ignoring the symptoms I had developed Barett's Oesophagus, which can turn cancerous. this condition is usually fatal. I now take Nexium tablets twice per day and it is mostly under control. I don't want to alarm you and am only mentioning this because if I had dealt with the problem when it started, I wouldn't have a condition which is irreversible and that can be fatal. So perhaps it might be a good idea to mention it to your GP, so that you don't end up like me.
2. 55rainey Member
 
 ask doc for protonix or its generic pantoprazole - worked wonders for my predisone and MTX caused gerd. do not eat late at night or lay flat after eating - ever see those angled pillows if you elevate your upper body a bit it will help a lot - I slept in a chair for a year when I was really bad - it helped with the gerd and pain actually because I could not roll over on my hands, wrists etc - gerd will mess you up if not taken care of so tell your family doc or rheumy - if not get over the counter nexium or previcid
nannysoo Member

I have developed a persistent cough that is so bad sometimes I nearly choke and I have a permanent thirst and bad taste in my mouth all the time. This adds another 4 tablets a day to my growing list of medication. Sometimes I wonder if I would be better off ditching the drugs and taking a chance!
1. abbyjude2002 Member
 
 I have trouble with a dry night cough also. My pulmonologist suggested a cool mist humidifier (after I had a sleep study to rule out sleep apnea) and that seems to help. I still have to drink some hot tea when I wake up to help me cough up whatever crud accumulates in my throat at night.
2. 55rainey Member
 
 every one is different. my younger brother also has RA but he is a mild case. mostly affects his hands and feet when flaring. he was taking all the drugs and seeing a top Rheumy and felt like I did - frustrated - he was always an athlete, a runner and a pro golfer. He got pissed on day when he got on the scale and was up 40 pounds from the meds and said screw it - flushed his meds - cold turkey on prednisone--yikes - he got a new pair of highly padded running shoes and started slowing running again and working with a personal trainer he knew in exchange for free golf lessons. he lost the weight and looks amazing and most of the time feels well. he said endorphins are great drugs. Again he had a mild case - sometimes if he jumps out of bed too fast his feet are numb and his hands hurt sometimes, I thin he has fatigue because he get grumpy sometimes which is out of character. It worked for him mostly - he eats too many aleve and coated aspirin when flaring. He has been dealing with it for half his life - he is 56 now and still off meds. I tried and ended up crippled because with fake hips and needs that are a mess running and endorphins are not happening LOL everyone is different. Your symptoms sound like you are on Methtrexate. maybe try a different med. I am off of it now 6 months and so greatful - I was on big doses my self injection along with Enbrel - Enbrel stopped working so doc switched me to Acterma and my sed rate went down enough to wean off the MTX and I am slowly trying to wean off prednisone - doesn't want to let me get below 5mg but sure beats 20,30,40,50 and 60. Don't just stop without talking to doc - some of these meds have horrible withdrawl if you do not do it correctly.
Member

I wake up in discomfort and stiffness everyday,I push through my day in the evenings after sitting I stand to hear cracking everywhere.I have trouble falling asleep and wake often during the night anyone else?
1. Jillian S Member
 
 1cud8qg, Thank you for your comment. We are so sorry to hear about your daily discomfort. In addition to the feedback you may get from the RA community, I found some articles that specifically address some of your symptoms: Similar to the format of the above article, here is another with tips from the community on how to deal with stiffness in the morning: <a href='https://rheumatoidarthritis.net/living/stiffness-in-the-mornings' target='_blank'>https://rheumatoidarthritis.net/living/stiffness-in-the-mornings/</a> Here is an article that discusses the sleep problem & has some tips at the end for a better nights rest. Let us know if you have any other questions or concerns. Best, Jillian (RA.net Team)
kwsfsw Member

I'm 62 and was dx with RA 16 yrs ago. Recently my neck is making very loud popping/grinding noises when I turn my head. Yesterday I sat up quickly to get out of bed and immediately the room was spinning and I fell back onto the bed hard.So all day yesterday and today when I turn my head to either side I experience the same thing--everything is spinning.I also feel unsteady on my feet , have a dull headache at the base of my skull and and am a little nauseated. Could this be RA affecting my neck?
1. sallygal Member
 
 I imagine it could be, though additional things may be at play. I have had chronic pain in my neck (cervical spine) for a number of years. MRI's have shown that I have a severe misalignment of C4 on C5 (anterolisthesis) which has caused severe cervical stenosis (narrowing of the canal) and severe bilateral foraminal narrowing, which causes extreme pain; the kind that radiates down my arms and back. Once, the pain was so bad it felt as if I'd been impaled. I've had three epidural injections and wonder if I'll need surgery someday. I try to keep neck pain at bay with exercises I've learned at physical therapy and pain meds; it usually helps to do all I can to stop the pain before it becomes entrenched. I don't know if any of my neck problems are the same as yours; But, you definitely need to have this looked at. Probably starting with your current doctor and possibly other specialists. It can be quite serious if the spinal cord becomes compressed. Good luck.
2. 55rainey Member
 
 could be but definitely get it checked - I have the same thing with the left side of my neck and get up slowly these days so BP doesn't crash and I get dizzy - we RD chaps need to not be falling down.
abbyjude2002 Member

My joints started out being the worst part of RA when I was diagnosed in 2003. Now my joints have minimal discomfort and I have more problems with the cardiac/lung/fatigue issues. In 2011 I was still working full time as an RN in the hospital special care nursery. I loved the babies, but also loved the fact that it did not involve a lot of heavy lifting, and since it was a smaller hospital and I worked nights, there was a lot of rocking chair time so I wasn't always on my feet. I caught a cold in Jan '11 that developed into bronchitis and went downhill quick...I had been on Enbrel and MTX and it seemed that I was always getting sick. I had been on many of the other biologics before going back to Enbrel. By the end of Feb. I had been off work 6 weeks, had 2 rounds of antibiotics and could barely lift my head. I was exhausted. I had a pulse of 110 at rest, was short of breath (cough had finally disappeared), seemed to be having continual hot flashes worse than anything I ever had before and could hardly function. I went back to my Internist, my hemoglobin had dropped drastically in a month with no obvious sign of bleeding.Saw more specialists and had more tests that last week of Feb.to rule out any source of bleeding, everything was negative. I had blood transfusions, so my hemoglobin went up, but my pulse and breathing problems persisted...so on to a hematologist, pulmonologist, endocrinologist and cardiologist and more invasive testing. I was finally diagnosed with IST (Intermittant sinus tachycardia, controlled for now with medications, but may need a cardiac ablation and pacemaker in the future), RA nodules in my lung, (just being observed) Hot flashes were the result of adrenal gland "microbursts" probably from being on prednisone (and oddly enough, the cardiac meds helped calm them down!) and a bone marrow aspiration showed I had anemia of chronic illness, for which I underwent IV Iron infusions for 3 months and a couple more blood transfusions (the bright side to that was the wonderful staff at MD Anderson Cancer Center in Orlando, where I had my infusions every Wednesday morning, (which just happened to be Krispy Creme donut and puppy therapy day!!!) All my doctors work for the same hospital system I worked at, so in June "11they had a powwow with my rheumatologist, and we decided I would stay off the enbrel, MTX and prednisone and see what happened. I never went back on those medications, and since my joints are happy, I just take ibuprofen if I need to. I did got approved for SSDI because I still have to deal with the other issues, and I do have some bad joint days, but since I am now home and not going in to the hospital to work I am not coming down with every bug I pass by. I miss working, and my work friends, but I keep busy at home. People say I look more relaxed and healthy than I have the past 15 years, but I know that inside there are a host of little problems that add up to making me feel like crap. So glad to find this group!
1. Jillian S Member
 
 Abbyjude2002, Thank you for opening up and sharing your story with us. I am so sorry to hear about everything you have been dealing with over the past several years. Please know that you aren’t alone in this battle and we are always here to listen and support you! As I am sure you are well aware, RA is associated with numerous comorbidities and complications affecting a wide range of organs. I wanted to share with you some more information on RA and cardiovascular disease: <a href='https://rheumatoidarthritis.net/medical-conditions-occurring-along-with-ra/cardiovascular-disease' target='_blank'>https://rheumatoidarthritis.net/medical-conditions-occurring-along-with-ra/cardiovascular-disease/</a> RA and Lung disease: <a href='https://rheumatoidarthritis.net/medical-conditions-occurring-along-with-ra/lung-diseases' target='_blank'>https://rheumatoidarthritis.net/medical-conditions-occurring-along-with-ra/lung-diseases/</a> RA and fatigue & anemia: <a href='https://rheumatoidarthritis.net/symptoms/joints-pain' target='_blank'>https://rheumatoidarthritis.net/symptoms/joints-pain/</a> Though I know how difficult it can be to give up a job, and one you love at that, I am glad to hear that you “look more relaxed and healthy” that you have in a while. That is great that you have been approved for SSDI. Now it is time for you to focus on yourself and what makes you feel strong and healthy. I wanted to leave you with an article called “Stressing About Stress.” I think it will reassure you that taking a break from work and its inevitable stresses is a very health decision: <a href='https://rheumatoidarthritis.net/living/stressing-about-stress' target='_blank'>https://rheumatoidarthritis.net/living/stressing-about-stress/</a> Warm regards, Jillian (Rheumatoidarthritis.net Team)
2. 55rainey Member
 
 hard to take these meds and be a nurse. we have no immune systems - I am a germaphobe these days and avoid tight spaces and large crowds - carry hand sanitizer everywhere because I like to hug and shake hands with people I see in church but if not careful I will get sick. and like you said its very hard to kick it once you are - I have had pneumonia a couple times now - hence the maddening shortness of breath. I stopped doing flu shots against my doctors orders 3 years ago and been healthy that way since-- no big sicknesses - I still feel they are a ploy for the pharma companies to make money just like I feel there is a hidden cure for cancer that is not come in out because look at all the money lost if there is a cure. sorry now I am on my bandwagon.
rhpass Member

oh my, let's see...dry eyes (have had laser iridotomy both eyes), 'chicken skin' all over me, thickened nails & hammer toes, oh and the ever lovely Reynaud's Syndrome. palpatations, dry cough-among other odd aches, pains & rashes. But I am afraid to just chalk stuff up to my RA for fear of it being caused by other things.....I feel like a big sissy sometimes!
1. 55rainey Member
 
 can relate to the chicken skin - I drown myself in lotion - nothing helps - omega 3 helps a little and olive oil rubs on bad spots- exfoliate exfoliate exfoliate - it does help a bit- I blame my thyroid issues and age for that but it stinks - I am working hard to get off steroids and lose weight and my skin is not rebounding like it should even with exercise. GRRRRR
melissa72 Member

I too have trouble sleeping. I toss and turn, get comfortable, fall asleep for an hour or two, and then wake up from the aches and pains coming from the side I'm sleeping on. Although the cough is annoying, it is the deepening and the hoarseness in my voice I can't stand. I received a scholarship for my voice and singing ability in college. Now the majority of the time I can't sing at all. I'm a 43 nonsmoker who half the time sounds like a 73 heavy smoker. I think that has been harder for me than anything. Even when my pain and stiffness was at its worst. As for odd symptoms, I would have to say the "lump" I get in my throat. It doesn't happen very often. I tried to explain to my dr that it feels like someone has thumped me in the throat. It then hurts to swallow. Not up around my tonsils but down lower in my throat. My dr just looked at me like I was crazy and said he didn't know...he'd never been thumped or hit in the throat. It worries me when it does it because I'm afraid that there's inflammation going on and the swelling may affect my breathing one of these times. So when possible I try to sleep till it passes so I don't panic. It helps reading other's posts. It's nice to know I'm not crazy or alone.
1. Lauren Tucker Community Admin
 
 Hi Melissa, Thanks so much for your comment, we are glad you are here. You are certainly not alone in the RA symptoms you described. While sleep and RA are a common question, some community members find these 2 articles hepful. "How to Get a Good Night's Rest" <a href='https://rheumatoidarthritis.net/living/sleep-ra-get-good-nights-rest' target='_blank'>https://rheumatoidarthritis.net/living/sleep-ra-get-good-nights-rest/</a> as well as "6 tips for better sleep" <a href='https://rheumatoidarthritis.net/living/6-tips-managing-sleep' target='_blank'>https://rheumatoidarthritis.net/living/6-tips-managing-sleep/</a> Additionally, I thought this artcile "A Hoarse of a Different Color" would be helpful: <a href='https://rheumatoidarthritis.net/living/a-hoarse-of-a-different-color' target='_blank'>https://rheumatoidarthritis.net/living/a-hoarse-of-a-different-color/</a>. You may always comment below the artcile like you did here, so the author can see your comments and possibly offer some support. We wish you all the best and please come back anytime for support and information. Best Wishes, Lauren (Community Manager <a href='https://rheumatoidarthritis.net' target='_blank'>RheumatoidArthritis.net</a>)
2. jillkf Member
 
 I can identify completely! The first time it happened was several years and my old rheumy we'll call Dr. Rude, had no answers... Of course I researched and found out about the cricoarytenoid! I had all the symptoms... Besides being in a flare, I had all the symptoms right down to the lump sensation and no voice!! Dr. Rude looked at me like I was crazy and brushed me aside?! I knew then I was done with him! When I found a new rheumy and discussed it like it should have been the first time and it only happened a couple of times. Well, fast forward to a month ago and for the first time in years it was back! I have had major flares going on and that lump sensation took forever to go away! Plus, I just started Humira. Has anyone had trouble with rashes? I have a non-itchy one right above the knee and the first was also there and the back of my forearms! Ugh! It goes away and comes back a day after Humira! Thanks!
Member

Unusual? Well, how about "nodules" in your tendons and muscles? I just came from appointment with my orthopedic for hand pain. Apparently, I have nodule in my hand between 1st 2 fingers, which is irritating the tendons and nerves in my hand. I followed up that appt with the neurosurgeon, and mentioned this to my (most excellent) neurosurgeon who did my back surgery in February and he said, "You know, I did see nodules in both your muscles and tendons when I was working inside your back, which did not show on the MRIs or Xrays. It is in my report from the surgery." And..... We now have a pretty good idea why I am having excruciating hip pain and pain lower down in my back below the surgery area. Nodules are irritating the tendons, muscles and nerves. Now, I just need to send his medical report stating this to my Rheumy & GP. Has anyone else had anything like this happen?
1. farmerbarb Member
 
 I have nodules in my lungs and one in my spine, which plays up sometimes and puts me out of action for a few days.
2. 55rainey Member
 
 I have nodules in every finger and big ones on my feet - they suck big time and hurt all the time. I also have a couple big ones on my back which hurt from time to time. You can have them removed but apparently they will come back. so I went up a size in my shoes, stopped wearing heels, and got thick gel inserts and it helps a bit. QUESTION to your surgeon.. If he saw them while he was in there why didn't he try to remove them then?? rather then tell you after the fact so they have to go back in. Sometimes steroids injections help if they get inflamed and really hurt.
suann Member

This is me.. I have the crippling now.. I have sjorgrens so I get the dry eyes and mouth, I do use a prescription eye drop for my dry eyes which has helped me very much..I am at the end stages of RA..This is something I have dealt with from a child, I was never given the chance to see a doctor for it so by the time I was 20 I was well on my way to being hospitalized with pain with great force behind it just like today..By the time I was 42 my mobility was much worse and I had to go on disability.. I do know how it feels to have all the systems of RA, I have fibro so naturally my breast bone is going to hurt so bad at times, along with several other auto inmune diseases.. There is nothing mentioned in the above story that I dont have except the bug bites, I get chiblins which can look like a bug bite...There are times I get so depressed because of this sickness..It is what it is,I know others have it a lot worse , God gave me life because he knew I would wear it well...I relate..Hugs all
farmerbarb Member

I have many of the symptoms listed but also have one which isn't listed here. That is, when I am about to have a flare, my core temperature drops a lot. Suddenly I will start to feel freezing inside and if I take my temperature at that stage it is always below 34.5 C = 94.1, normal is 37 c= 98.4. Within a few hours of this, one or more joints begin to swell and become red, excruciatingly painful and red. The only way to avert a full blown attack is to start a round of 50 mg of prednisolone for the next few days and the taper off back to my normal 7.5 mg over 20 days. Apart from that, RA has destroyed my thyroid, caused apical thickening on the top of my lungs along with a few nodules and also a dry annoying cough. Of course there is the usual joint destruction, dry eyes and exhaustion, to add to the misery. However, I don't let that stop me, I am an author, a grazier and an artist. Keeping busy and active is the way to go for me. Sitting down and feeling sorry for myself is not my style.
1. 55rainey Member
 
 I am normal temp for the first time in 8 years. from inflammation I was always running a slight to full blown fever but thank god for Acterma - it has sed rate now at 5 - 8 - if it wasn't for fibro and all the damage it has already done to my joints I would probably not be in pain. My knees and feet are shot, orthodics do nothing to help. Seeing my ortho doc who replaced my hip years back to talk about my knees. they sound like paper crumbling. just got to keep getting out there and being no matter what - when you give up so will your body. I make myself move through the pain because I do not want to become a hermit and dissappear from this crap
juliekemble Member

The unusual and the frustrating is my usual. I developed Pulmonary Arterial Hypertension (PAH) five years after my diagnosis. Between the two diseases I have right heart failure, an enlarged heart, pericardial effusion, joint pain of which costocondritis is the most difficult to manage. Thanks to a clinical trial for the PAH I have found a med that has quelled my joint inflammation and allows me to walk and use my hands. I had nodules in my lungs that eventually went away. I'm allergic all the dmards and rituxan. Can't use Enbrel because of my lungs. I am currently being worked up for gastrointestinal issues and found cysts on my spleen and pancreas. Fatigue and insomnia steal away what little energy I have. I am strategic about how I use my energy and run errands. I get ocular migraines and have had a blood clot in my eye. My knees have been drained and injected as has my shoulder. The saving grace is that I do not have to use the wheel chair. It concerns me when I see people writing about shortness of breath and fatigue along with chest pain. See a pulmonologist ASAP. I miss my job. I taught elementary school for 23 years and due to a highly suppressed immune system I am afraid to volunteer at the school. But....I am thankful every single day for my mobility and my excellent team of physicians.
1. 55rainey Member
 
 me too Julie - two years ago inflammation caused 3 back to back heart attacks. the inflammation caused it - at the time my sed rate was close to 70 and pain was daily about a 9 a high blood pressure med that keeps the blood vessels open has solved the issue for now but still deal with shortness of breath. seeing a cardiologist and a pulmonary doc. use a cpac now for apnea - aparently i stop breathing 10-15 times an hour - I was 65 pounds overweight from steroids. I have lost half of that now and the cpac is keeping the apnea at bay - now I just need some real sleep- up and down all night
2. mehurtsnow Member
 
 I too worked in school system and loved my job. Due to stress, constant motion, so many things i can look back and see the markers. I just didn't know.
sobrietykat Member

I was Diagnosed 3yrs ago telling me i have a Autoimmune Disease called Sjogrene Syndrome with secondary RA. It feels at times like my fingers are going to fall off my bones. And not only do i have it in my hands & fingerz i also have RA in my Toes. And I'm a Below the knee amputees on my left leg. I normally go to bed around 2 or 3am which i took my sleep aid 3hrs b4 it. I am using Lidocane patches for my hands. Its a BITCH..
55rainey Member

wow can so relate- I suffer from easily 75% of the things you listed here. Some have gotten a bit better using Acterma injections weekly but a lot of it just won't In addition one of my frustrating ones is I have been getting sores. 1 or 2 at a time, mostly on my thigh area and now am getting a couple on my upper back. they just won't heal and when they finally let up there is still a lump under my skin and a lovely scar. presently just one large one on left thigh. so annoying. the shortness of breath and throat issues have caused me to stop singing - I have always been in a band and a lead singer and now a few songs and I have difficulty with hoarseness and breathing. it breaks my heart because it was my passion in life. been fighting RA and fibro going on 8 years and thyroid issues for over 30 - hang in there
1. mehurtsnow Member
 
 I've discovered "sores" around the lower part if my legs. Theyre not open, but a knot sits directly in the middle and is slightly elevated. My gp didn't know what could be the cause. Now I think I know after joining this site. I have all 10 RA symptoms, have rhume, but these knots are new. Im so thankful for finding this website.
55rainey Member

mt dad is pushing me to go grocery shopping on the worse day of the year almost and is annoyed I haven't done it yet today. the stores are mobbed and I cannot do all the walking that shopping requires and then stand in line forever and then have to walk to the back of the lot to load up and then come home and unload. have a very high pain day and he just doesn't get it. Drive around till a handicap spot opens up. he just played 19 holes of golf so he is too tired. I wish I could go play golf. sorry just venting. so many things on this list apply that is is scary somedays.
reidette24 Member

My sister has had RA for almost 20 years. She was a school teacher but had to retire early because of pain and fatigue. I could see what this disease was doing to her and it upset me so much. I thought maybe I wouldn't have RA since I didn't have any symptoms, but then 4 years ago I started having many of the symptoms you listed. I went to several RA doctors and finally found one that diagnosed me with RA. I was so afraid. Im 64 now and feel much older. My husband and I had only been married 6 years and during that time I felt great!! We live at the coast and enjoyed fishing together and I loved looking for shells. About 3 times a week I walked 2 miles on the beach and loved it!! Then all of a sudden I started having symptoms of RA. The pain never stops. The fatigue is so hard to deal with. Sometimes when I walk from one room to another I am totally exhausted. I can do very little housework so my husband had someone to come once every 2 weeks to clean our house. And I'm so unorganized now. It drives me crazy. I've always enjoyed keeping our home clean and loved cooking. But it's seldom that I can cook a meal or bake a cake. I also have psoriasis and fibromyalgia, forgetfulness, dry eyes and depression. Secondary sjogrens disease, spinal stenosis and osteoarthritis. Before this I was healthy and very active. I get a Symponi Aria infusion every 8 weeks, give myself an injection of methotrexate once a week. I take Cymbalta and Wellbutrin for depression, plaquanil, and Opana ER for pain. And even though I take all this medicine I'm still in pain and tired every day. I have to cancel appointments and plans with friends constantly. How can anyone be happy with all of this going on. I am a Christian and love Jesus with all my heart but I don't know how to pray about this. I pray that one day there will be a cure for RA! Blessings to you all! I hope you will begin to feel better soon!
1. crystalg46 Member
 
 Has your dr. Recommended Nuvigil or Provigil for your fatigue? I have horrible days still but this medication has really helped me for most days, it is also wonderful for clarity and that wonderful brain fog we go through
2. Mary Sophia Hawks Member
 
 Reidette, I had to quit methotrexate due to overwhelming fatigue. Does methotrexate help with your symptoms? Discuss this with your rheumatologist. Virtual hugs, Mary Sophia
5244seth Member

Hi, I have not been diagnosed with RA but feel that is what I have. It has been over a year since I woke up one morning and did not feel right and have not felt good since that day. Have been with a rheumatologist for 9 months have tried multiple medications, the newest being actemra but still no diagnosis. How long has anyone stayed with a Dr before you decide to move on? Maybe I am just impatient but my life has totally changed, cannot do anything that I used to, hate cancelling things all the time and miss my life. Is it better with a diagnosis or am I rushing things? Just need someone to listen that may feel the same. Thanks for listening.
1. Richard Faust Community Admin
 
 Thanks for writing 5244seth. It is good that you have come to a place where you can get information and support. As this article from our editorial team notes, "getting a defintive diagnosis can be a frustrating process: <a href='https://rheumatoidarthritis.net/living/getting-definitive-diagnosis-can-frustrating-process' target='_blank'>https://rheumatoidarthritis.net/living/getting-definitive-diagnosis-can-frustrating-process/</a>. This article looks in more detail at the diagnostic process: <a href='https://rheumatoidarthritis.net/diagnosis' target='_blank'>https://rheumatoidarthritis.net/diagnosis/</a>. Remember that no one will look out for you like you. If you feel you are not getting the care you need you are always entitled to a second opinion. This article looks at finding excellent doctors: <a href='https://rheumatoidarthritis.net/living/finding-excellent-doctors' target='_blank'>https://rheumatoidarthritis.net/living/finding-excellent-doctors/</a>. In addition, you may want to take a look at our Facebook page at <a href='https://www.facebook.com/RheumatoidArthritisDotNet/' target='_blank' rel='noopener noreferrer ugc'>https://www.facebook.com/RheumatoidArthritisDotNet/</a> for more feedback from our community. Please keep us posted on how you are doing. Best, Richard (RheumatoidArthritis.net team)
2. melody123 Member
 
 I too tried many biologics. I found success with intravenous orencia once a month but it took about six months to really feel better
amberrose Member

Tingly/itchy feet, ankles and lower legs. Sore throat that comes and goes.
gmcdonald072 Member

Hi! Does anyone else out there get leg spasms? Almost every night before I can get to sleep! It feels like someone is poking me with a cattle prod! Electric shocks just above the rear of my knees!! Sometimes only one leg, but lots of times it's both! I had both of my knees replaced in the last two years, but this is something new! It just started about 2 months ago! It takes a couple hours, and another round of pain meds before I can finally get some sleep!!
1. kojo Member
 
 I do all the time!
melody123 Member

I have foot pain daily and I also could not take methotrexate. I got very nauseous with sulfasalizine so I asked my Dr if they made it enteric coated? Yes and it works well. No more nausea and foot pain better. Of course I also take my biologic
stetler Member

All I can say is "wow", I read the long list and said to myself," I suffer from almost all of these unusual symptoms". I take my biologic and Plaquenil and I am a Christian so I ask for help daily to get through each day. Thankful that God sustains me.
tich Member

I donated a kidney to my brother two decades before I had a clue that I have RA. When my Ankylosing Spondylitis diagnosis came the limitation of decreased renal performance meant that an important class of meds were restricted for me; yes, NSAIDs. Celebrex had been so effective in keeping me on the job. I was sent to pain management, and well you know how that goes. This disease has strange effects that we don’t understand for many years... if ever.
pepalepeu53 Member

I was curious if any of the group started out with feeling dizzy and ended up diagnosed with BPPV. Benign positional vertigo. I just got dgiagnosed and have had RA since 2009. I wonder if the medications have anything to do with it
rhpass Member

Only thing missing is an overly productive cough. Anyone else have a problem with this? My doctor reluctantly agree to a short medication hiatus. I’m running out of ideas...
1. Kelly Dabel Community Admin
 
 Thanks for commenting "RHPass". Glad that you are maintaining close communication with your doctor about your symptoms and treatment plan. I hope that others here chime in to share with you their experiences. Wishing you some answers and relief ahead. Best, Kelly, <a href='https://rheumatoidarthritis.net' target='_blank'>Rheumatoidarthritis.net</a> Team Member
kojo Member

Since being diagnosed, I’ve also been diagnosed with Glaucoma, Eczema and increased incidences of Irritable Bowel Syndrome. I frequently have trouble swallowing...I can’t drink any kind of alcohol anymore, it makes it so much worse. My sinus bother me so much more than they use to, and my shoulder blades are in constant pain.
1. Kelly Dabel Community Admin
 
 Wow kojo, you definitely have so much going on. Please be sure to speak with your doctor about any new, changing or concerning symptoms, if you haven't already. Have you had a specialist evaluate your swallow? You may be interested in our sister-site <a href='https://www.irritablebowelsyndrome.net' target='_blank' rel='noopener noreferrer ugc'>www.irritablebowelsyndrome.net</a>. Wishing you some answers and relief ahead. Please reach out anytime, we're here to support you. Best, Kelly, <a href='https://rheumatoidarthritis.net' target='_blank'>Rheumatoidarthritis.net</a> Team Member
chjarrell Member

Wow - I have many of the same symptoms. I didn't realize how many others had the same in our RA family. It was good to read that - that I'm not alone... the black splotches that look like bruises, tedonitus etc. Sudden sharp pains that make me yelp and wince, sometime loud. Mild clinging headaches that I nurse to avoid a full blow migraine - the worst part is when your spouse says things like - I think you're just milking it, or - you always....
1. RHall Community Admin
 
 <inline-mention username="chjarrell" user-id="3158413"/> yes you're definitely not alone. It can be hard too when RA is "invisible" to others. They don't know you have the condition so they don't realize the extent to which you're quietly managing symptoms. And then to compound it, you don't always know if other people around you have RA so it can be very easy to feel alone and like you're the only one going through it. It sounds like you're managing multiple symptoms pretty often. There is nothing I say to make those go away. So I don't want to sound trite, but just acknowledge that I know it really stinks and is painful and I am sorry it's happening. If you'd like some extra information on a specific symptom - please let me know. - Reggie (RheumatoidArthritis.net Team Member)
2. chjarrell Member
 
 <inline-mention username="RHall" user-id="3226625"/> thank you - you are so right - others don't know how I'm feeling - most us appear normal! I appreciate your sentiment - I am glad that I found this forum, truly
BjShannon Member

I have recently experienced new issues. I have a lymph node in the back of my neck that has been swelled for the past 6 months. I developed a skin rash on my legs that is spreading to my arms and everywhere. The dermatologist did a biopsy and they said it is Disseminated Superficial Actinic Porokeritosis. It's rare, of course! The dry eyes ate constant. I have recently received a diagnosis of pain I have had for 9 years. Glutius medius tendenopathy along with trochanteric bursits on my left butt and hip along with the sciatica. I just had the left and now the right side of my lumbar nerve ablation. My right leg and ankle swells more than my leg. I have hypertension but a low heart rate and daily PVCs that go back and forth between Ventricular bigeminy and Ventricular quadrigeminy. I am on 3 BP meds. I have seropositive RA that I'm treating with Hydroxycloroquine and Rinvoq. Just switched to the Rinvoq from Xeljanz for rhe past 2 years. I was diagnosed 5 years ago. All this not to mention the other stuff. Fibromyalgia, OA, Sleep Apnea, IBS, @@Interstitial Cystitis. Who knew it would be this complicated!?!!
1. RHall Community Admin
 
 <inline-mention username="BjShannon" user-id="3135661"/> That's so much to deal with. I'm sorry that you have to go through this right now. How are you feeling managing so many different conditions? Have you experienced side effects from taking multiple meds? - Reggie (RheumatoidArthritis.net Team Member)
elirose Member

Hi Team, I am new to RA but have had symptoms for quite awhile that may or not be RA. This has to do with my wrist. I had injections in both. One aches and felt like I had hit and injured ,the other one on hand that has bothered me the most was a big ouch when I used my hand like downward to wash dishes. After the big ouch, no pain. When the injection was being done, the rheum dr. felt like a click. Said not a familiar RA pain. Even after the injection. I still get a big ouch then pain gone when using hand. Seems if not focused on motion or using hand and fingers used in downward motion to do dishes. Not asking for advice. But has anyone had pain like this that is an ouch in use then completely gone afterwards like something disjointed. Thank you, elirose
1. L rick Phillips Member
 
 <inline-mention username="elirose" user-id="3162968"/> Hello. I have had several injections in my hands however, I have not experienced what you describe. I wish I could add something to help. I wish you the very best. Perhaps others have experience with this. rick 
2. RHall Community Admin
 
 <inline-mention username="elirose" user-id="3162968"/> Hi there - I wanted to share an article about one of our community members experiencing wrist pain. There also are a lot of comments in that article too. I realize that all of their experiences aren't exactly like yours (with the pain happening and then disappearing) but some of their wrist perspectives might illuminate something for you there. I hope you feel better soon. Here is the article (<a href='https://rheumatoidarthritis.net/living/wrist-pain-flare-up' target='_blank'>https://rheumatoidarthritis.net/living/wrist-pain-flare-up</a>) - Reggie (RheumatoidArthritis.net Team Member)
elirose Member

Hi Rick , Thank you for getting back to me. My RA symptoms for most part are doing well. Take care
valariem Member

I have super super bad circulation my fingers and toes go numb I have nodules on the bottoms of my feet on my joints on my hands also my hands are deforming my index finger is about an inch and a half thick and super painful when I have flare ups I get very skittish I have a hard time breathing I have a hard time dealing with things my mouth swells up my fingers swell up sometimes I can't move a limb usually if my left foot is sore my right arm will be sore I have hair loss my teeth are gone I can't deal with stupidity I get so angry I'm in constant pain 24/7 sometimes I don't even realize how much pain I'm actually in because I do it so much pain and people tell me that I'm will not people my boyfriend tells me that I complain too much that I don't have the pain I think I do he thinks his pain is worse than mine I know there's no way that his pain can be any worse or anything like mine cuz it's horrible some days I just want to die
1. Lori Foster Community Admin
 
 Hi <inline-mention username="valariem" user-id="3250237"/>. I wish I could take your pain away and that you had more support from your boyfriend and friends. Pain should never be a competition. Have you tried all the various medications for RA or have you gotten tired of trying? Treatment fatigue is not uncommon, especially if you are not seeing big improvements over long periods of time. Please know that you are not alone in feeling like you want to give up. So very many people in this community have been where you are now and know where you are coming from. Sometimes, it helps just to know someone out there understands even if the people closest to you do not. Chronic pain can make anyone depressed, but it is really important to address depression for many reasons. Among them is the fact that it can put stress on your body and make your RA symptoms even worse. Here is an article from one of our advocates about RA and depression that might interest you: <a href='https://rheumatoidarthritis.net/living/depression-treatment-outcome' target='_blank'>https://rheumatoidarthritis.net/living/depression-treatment-outcome</a>. I hope you don't give up on finding a treatment that helps. A member of our PsA community found an effective medication after 20 years of trying and it completely changed her life. That can happen to you as well. Look for clinical trials, switch doctors if you need to, but keep trying. Thinking of you and sending the very best of all wishes your way. - Lori (Team Member)
lynsey73 Member

Hi, I found this to be really interesting especially about the bruising. I've had so many blood tests trying to figure out why I'm constantly covered head to toe in bruises and now I know it's just another suprise from RA. This illness just keeps on giving. 
1. Kelly Dabel Community Admin
 
 <inline-mention username="lynsey73" user-id="3201479"/> Glad this was helpful to you. Be sure to speak with your doctor about any new, changing or concerning symptoms, if you haven't already. Wishing you some relief ahead. Best, Kelly, <a href='https://rheumatoidarthritis.net' target='_blank'>Rheumatoidarthritis.net</a> Team Member
lynsey73 Member

Thankyou x
davmo Member

I lost the bottom range of my vocals. I used to be a bass singer. I can no longer resonate in the lower ranges.
1. Richard Faust Community Admin
 
 Hi <inline-mention username="davmo" user-id="3146841"/>. The impact on the voice is definitely an overlooked RA symptom. I can't tell you how often my wife, Kelly (a contributor here), has woken with little or no voice. This Forum discussion is on just this topic: <a href='https://rheumatoidarthritis.net/forums/voice-loss' target='_blank'>https://rheumatoidarthritis.net/forums/voice-loss</a>. Best, Richard (Team Member)
Jjinblueridge Member

I have RA pain in my ribs and lower spine, dry eyes and some hair loss.
1. Erin Rush Community Admin
 
 <inline-mention username="Jjinblueridge" user-id="4245349"/>, I know RA likes to throw some curveballs, doesn't it? Are you able to manage the pain you experience? Best, Erin, Team Member. 
2. Richard Faust Community Admin
 
 Hi <inline-mention username="Jjinblueridge" user-id="4245349"/>. I don't know if anyone has mentioned costochondritis to you in relation to the pain in the ribs, but this article from our contributor Wren gives an overview and info on treatment: <a href='https://rheumatoidarthritis.net/living/sharp-poke-in-the-ribs' target='_blank'>https://rheumatoidarthritis.net/living/sharp-poke-in-the-ribs</a>. I'm not saying this is what you are experiencing (only a doctor can do the proper diagnostics), but many in the community have experience it. Hope this information can help. Best, Richard (Team Member)
Jjinblueridge Member

Yes most of my pain is managed reasonably well. We live in the Hurricane Helene hit area in NC and this past 8+ months has been difficult weatherwise with physical effects on my RA. I have had 2 RA flares that needed steroid to calm. I can't take much ibuprofen due to liver effect. This has been a challenging winter for me.
1. Dan Malito Community Admin
 
 <inline-mention username="Jjinblueridge" user-id="4245349"/> I'm sure. I can't imagien what it must be like - trying to take care of your RA while also trying to rebuild your community and not having access to the regular amenities that you usually are used to! Challenging winter for sure! I have had to up my steroids a few times myself so I know how much of a trade off that can be as well. You are certainly not alone! Keep on keepin' on, DPM