What Is the First Symptom of Rheumatoid Arthritis?
Officially Sanctioned RA: The First Symptom of Rheumatoid Arthritis (UPDATED 2016)
Do people with Rheumatoid Disease (PRD) have the symptoms they’re expected to?
From what I’ve read in books and online, the first symptom of Rheumatoid Arthritis is supposed to be in the hands. So that it can be diagnosed. Because most diagnosis RA by the hands. (A bit of a circular argument, but that’s how it is). I’ve mentioned to you before that hands are considered central to diagnosis of Rheumatoid Arthritis.
Check these out:
Is There a Typical Rheumatoid Arthritis?
Why Is Diagnosing RA So Difficult
How is Rheumatoid Arthritis Diagnosed part 1
How is Rheumatoid Arthritis Diagnosed? Part 2
Many researchers and doctors consider RA to be primarily a disease of the hands and wrists. Other small joints can be affected, they say, but hands are first. According to PRD, many doctors examine hands to diagnose as well as to judge disease activity.
Is that an accurate description of the first symptom of rheumatoid arthritis?
No.
How do I know? I know because I’ve gained a broader perspective by reading many thorough articles on diagnosing RA like this one. Also, I’ve spent even more time reading the accounts of actual people with Rheumatoid Arthritis. Many PRD do not experience symptoms in the hands early in the progression of their disease. In some cases, those PRD are not following the pattern which is set forth by those who officially authorize and certify a “definition” of Rheumatoid Arthritis. This is can make diagnosis difficult.
Here is a first symptom of rheumatoid arthritis list that I compiled after talking with real people being treated for RA:
Eye inflammation / uveitis / iritis
Feet pain and / or swelling
Back pain (spine)
Pleurisy (lungs)
Heart (heart disease or inflammation of lining)
Ankles (pain and damage)
Elbow
Hip
Shoulder
Knee
Intestinal inflammation
The unlikely first symptom of Rheumatoid Arthritis: Feet
I am one of those lucky peeps whose Rheumatoid Arthritis struck my feet before my hands. The pain began at age 15. The occasional pain or swelling got worse over the years.
Early in 2006, there was intense swelling and pain which caused deformity literally overnight. One morning, I awoke with a toe that had moved about 45 degrees. I could not walk on it. Within 24 hours, the other foot did the same thing. At least they matched.
Within a few days, RA attacked several joints on both feet so that I could not wear shoes. It felt as if I were standing on rocks all of the time. It took a few doctors to realize that this was actually RA. In fact, I was not diagnosed until it had spread to several other joints. Incidentally, that did not include the hands at that point.
Since I did not realize the seriousness of my fate, I never took pictures of those unbelievably deformed feet. Fortunately for me, the swelling went down and I can walk short distances now with only moderate pain. However, I have a completely different pair of feet. RA feet.
Updating this now in 2016, I’ve had many injections over the years in my feet to bring down the extreme inflammation. I still see the same podiatrist who splinted my feet 10 years ago to help the joints come back in line. He helped diagnose my RA. The lumps beneath the base of the toes are always there, but ice packs help somewhat.
IF YOU ARE a PATIENT –
Please add your comment below to tell us about your first symptom of rheumatoid arthritis. Or you can answer for someone you know who has RA.
IF YOU ARE a DOCTOR or NURSE –
Please read through the hundreds of comments by patients to see the wide variety of first symptoms.
Recommended reading:
- Sympathy and Living with Rheumatoid Arthritis Symptoms
- My Quest for Answers to Questions About Rheumatoid Arthritis
- Weathering Rheumatoid Arthritis
Started in my left shoulder, within a day it hit my right shoulder then left hip and shortly after my right hip. This was back in my early 20s…I was diagnosed with bursitis in the hips and tendonitis in the shoulders. The pain came and went and I had the occasional flare up in my wrists and fingers through the years but not til my late 30s did the rest of the body kick in and I got a proper diagnosis.
Hi SherriAnn, you’re the first person I’ve heard of with an onset pattern almost exactly like mine. Mine was hips & shoulders too, in the same pattern, but with occasional feet flares too. Then the whole body kicked in over 20 years later.
You know that with RA, you cannot even bump your toe into the side of a table without terrible pain. I remember when they thought I had a heart attack and were doing some test. All I kept saying was ouch, ooo that hurts… The nurse said, you must be one of THOSE women who have Fibre Mialgia. I had no idea what she was talking about. But, years later and many doctors trying to help me with pain in my hips, shoulder, hands, toes I am now diagnosed with RA and Fibre Mialgia. I wish I could say that I will not be taking pain meds in the years to come, but it does not sound like it. I fight to have enough energy to make dinner and clean the kitchen and house. I shop for groceries and feel like I am fighting in a battle. I am really trying to go on and I dont want to be an invalid. Some days are better than other. I am so glad this site is here. We can talk to each other. This RA has SO MANY symptoms. I just had some kind of foam inserted by injection into my knees. Has anyone heard of this??
This may sound odd. But have you ever had a root canal?
hi Lee please can you give me some advice ive been going to my doctor for 20 years suffring pain i was 29 when it started its got worse my knees my hips my neck my wrists now my feet it so painful my fingers ache like you would not believe i cant get my doctors to believe its more than fybromalgira please can you help me please
Hi
Wow you describe EXACTLY the same as how I have been over the last few years, so many sources say that hips and shoulders are not affected in the early stages but how wrong, it makes you feel as if you are some sort of fraud!
Any way thanks for your post,
🙂
My Dr told me that I had RA and needed to see a Rheumatologist cuz my fingers are so swollen that I can’t close them anymore. I just turned 37 and now I can’t move my shoulder anymore! It’s locked and the muscles around it are all freezing up in pain! This all happened within 6 months. I haven’t even seen the RA Dr yet. I see her next week and I really hope she can do something about this pain!
I’m 37 and was recently diagnosed with RA after a severe flare up In my right shoulder and wrist which had me scared and crying all night. I couldn’t move it and my husband had to help me get dressed. I knew I would end up with this illness because my mother has the worst case I have ever seen and was dealt this at the early age of 34. She has been through so many surgeries that I’ve lost count. Her hands and feet are deformed and she moves in a wheelchair. I have been the one taking care of her but now here I am going down the same path. I’m hoping I get to see a specialist soon and I start getting treatment fast. I have been hurting from different places everyday for 3 straight weeks now which is very scary
Two years ago at age 33, I was diagnosed with RA. Six months previous to that, I had severe fatigue and brain fog. I told the PA my symptoms, and that my mother has Lupus. My RF test came back sky-high, and six months later the pain and stiffness set in. Boy did it set in. Ive now been living with the pain for two years, and the fatigue is not as bad as it used to be. The RA mainly affects my knees.
Sylvia, I totally understand the exhaustion. No matter how much sleep I get, I could sleep and sleep. I thought maybe it was my meds. But, when I sleep I dont hurt. My God how much worse will this get? My family doctor told me that most women with RA died from Heart disease. I can see where this could be very hard on the heart. I try to walk without looking like I am a cripple, but it is difficult.
Sylvia,
What do you find that works for your knee pain? I find that nothing takes it away. I cannot even get down on the ground any more, because I would never be able to get up again. I am still working full time and would appreciate any non narcotic solutions (these don’t touch it anyhow and I cannot take them at work). Prednisone is very helpful, but I know that I cannot take it long term.
have u tried Meloxicam. I also got fitted for a knee brace that I wear if I am going to be doing much walking. Has given my knee a lot of relief.
Hi Stacey. I had severe knee pain a couple of years ago. The knee pain was so bad, I could barely push on my gas pedal of my car. Never had knee pain before. It just all of a sudden was in extreme pain.
I received 3 free treatments at a Chiropractor, whom also deals with Neurology. He also deals with natural cures.
Name is Michael Johnson. He is in Appleton, WI. He also has a website, with a lot of free information. He used some kind of laser on my knee and some other treatments. After the 3rd treatment, my pain was totally gone. I have no idea what the pain was from.
My first symptoms were incredible swelling in my feet and ankles…followed rapidly by debilitating knee pain and massive swelling of both knees. I went from running 8 to 10 miles a day with no history of knee injury…to not being able to walk up the stairs in my home in a matter of a few months. I rembember coming home from my 13 hour night shift as an icu nurse and taking 2 percocet and an ambien (I never took meds before) and crying for hours because the pain was so bad that I could not sleep. I could not get out of a chair, and had to use the handicapped bathroom stalls because I could not get off the toilet without the help of grab bars. What the hell? I was only 44. And I knew what it was. I didn’t want to hear it. But I knew. My elbows became stiff…not painful…just stiff. I could hardly bend my knees. These knees were not mine (which were always tiny). They were my grandmother’s…and her mother’s before hers (both had RA). Then my eyes began to feel like they were full of sand every morning. I was a wreck just trying to get into the bathroom every morning…couldn’t see…couldn’t bend my knees. I was exhausted. I had a low grade fever. I had lost the strength in my hands many years ago, and learned to compensate for it at work. I used a hemastat to unscrew iv caps and open bottles because I had no grip. Nurses are very inventive. I never thought much of it. Nor did I think much of the fact that I had to use both hands to lift my Calphalon cookware for many years. One night I came from from work and got on the scale with frightful swelling in both ankles. 9.8lbs of swelling. I couldn’t deny that something was seriously wrong any longer. I took my first dose of methotrexate, 30 mg of Prednisone, and will be starting biologics next month. I have quit dairy, wheat, anything processed. This is not what I had envisioned for my “golden years” to be sure.
Wow what can I say? After reading so many of your stories all I can do is cry. I feel so connected for the first time. Ive been to so many doctors but not one has said anything that confirmed what I knew was going on. My pain stared a few tears ago and has progressed now to extreme pain. Im a female and a Truck Driver by trade. I don’t know how long I can keep this up Im a soingle mom and 51 yrs old. The pain in my elbows and hips and shoulders are to much to bare and its now going into my back, Im starting to get worried I may not be able to drive much longer. I feel the sandy feeling in my eyes when I wake as well. Ive got to get a proper diagnosis. Thank you for all of the sharing Ive read here and God Bless each of you. Kathy
New to the group and posted on a reply by mistake, let me try it again lol
‘Right shoulder with me was told it was a frozen shoulder, been back and forth to my GP (im from the UK) for over a year.My fingers are effected on both hands, shoulder and both ankles and wrists, its only now im being sent for bloodtests, waiting on the results.Nodules on one finger and side of lower left leg.History of RA in both mother and fathers family.I swear drinking wine triggers a flare for me including chest pain the next day (possibly inflammation of lungs?)Only medication I have been given without diagnoses is Napraxen for inflammation and Tramadol for pain’
~Since posting this my blood results have come back normal, im devastated are they trying to assume im a hypochondriac.Blood tests were done when I wasn’t at my worst, I have shown doctor photographic evidence of the distortion of my fingers whilst at my worst, but would there have been evidence of something even tho I wasn’t having a flare at the time of blood test? Im totally at a loss at what to do next.Nothing has changed as far as the morning stiffness and pain in areas of my body mentioned and the nodules… I feel like a fraud
Rachel,
seronegative RA is very common. My initial test (20 years ago) were all negative as well. Were you evaluated by a rheumatologist or a GP? What blood tests were done? There are also other inflammatory types of arthriitis that can produce your symptoms. A rheumatologist is the best doctor to evaluate these.
To Rachel…..it’s not uncommon (I’ve read on the links for RA) to have blood tests come back normal. Your symptoms sound a bit like mine before my diagnosis. I had them off and on for over 4 years before diagnosis…then a very astute practioner suspected something serious and sent me off for lab work. Mine came back RA. Keep rattling your doctor’s cages and don’t give up. There are several RA links on FB—-some are even closed so you can ‘chat’ w/o others not belonging to the link reading what we say. Best wishes!!!
Left ankle first. Swollen all to heck – looked exactly like I’d sprained my ankle. Except I hadn’t. Then left wrist and right knee. Took about a year to settle into a nice, easily diagnosed, bilateral wrists and MCP joints pattern.
My feet are terrible…I can totally relate to the big toes moving at least 45 degrees…and wearing shoes? Ouch! But my hands are bad too…so far no deformity, just pain and stiffness, swelling of the joints. Nice, huh?
I was off work for two months with respiratory issues that they couldn’t figure out. Finally, my PCP put it all together and ordered tests for various autoimmune diseases…and that’s when we finally had a name for what’s been plaguing me for several years now.
My Ra started in my feet. It was so bad I ended up in the er and hospital for 5 days. Couldn’t walk at all took days of dulaid just to get the pain under control. I still live on morphine. I have been started on enbrel and it is helping. It has been 1 year 6 months of pain and fatigue. I don’t know if I will be able to get out of bed one day to the next. I also have fibromyalgia which makes it even harder.
I have the same symptoms. The exhaustion is what’s affecting me the most. I have tried l-argine which gave me energy back. Almost a slight buzz. I took 500mg with breakfast. I’m a female 5’5″ 150 lbs. I’m going to try half a pill next time. It didn’t stop the brain fog but it was nice to have energy again. It gets very scary when you can function. Look it up. I hope it helps others.
I have just been diagnosed with RA, it started in my feet and was actually thought that I had Mortons Nueromas, had quarterzone injectons but they kept coming back, and then almost over night the hands started, so more tests. Now its so hard to walk on my feet in the mornings. I actually though I had ruined my feet from wearing and dancing in high heels. So at the moment its my hands and feet but get short sharp pain else where but don’t know if its related. I am extremely stressed and anxious about it all, I have been prescribed meds but am too scared to start it at this stage. Wonder if I should wait till it gets really bad to warrant taking it?? Can feel my self getting quite depressed and friends definitely don’t understand as they have just said “you’ll be right, stay warm and change your diet” Mmmm, ok. 🙁
My husband has just been diagnosed with RA. I guess we are in denial, did not know what to ask the Dr. His started in his foot, we thought it was Gout. He has had back surgery due to his disc being blown. Has had shoulder pain too. He does not have it symmetrical but only in one foot. He has had the mystery flu, but no fever just chills and aches. His RA was more than 130 his anti CCP was normal. So does he have RA? Also uric acid was high he also suffers from Kidney stones. From this can you tell me what I should ask and the answers I should expect from the Dr.
Thank you so much for your blog.
Scared in TX
I had a lot of weird “first symptoms” It started,I believe, when I was 39yrs old (even though I can remember certain things years prior) I had pain in my eyes, trigeminal neuralgia, weird head pains, palpitations, shooting pains in my fingers, toe cramps, pins and needles on bottom of my feet, a lot of “nerve pain” and fatigue. Then at age 43 I had a heart attack, Double Bypass, then “frozen shoulder”. after that I actually felt good for about 2yrs then last summer 2012 I woke up one morning and it felt like I was walking on rocks and my middle finger felt like it was broken, that went on for a month, I went to a rheumatologist and a couple days later found out thru blood work the I had RA.
For years I wondered what was wrong with me, went to numerous doctors and cried a lot, told my family to do an autopsy when I die, even after my heart attack in the back of my mind I knew there had to be something, I had no family history with heart disease, especially early, I’m a slim person and was very active, even the surgeon on my by-pass told my family that he believes I had some type of systemic disease, my arteries were very frail and small I had scar tissue in my chest and enlarged lymph nodes. Well I was glad to finally hear a diagnoses, but I still fear what is going on inside my body, I have had some kidney issues lately, my pc doc tells me I more than likely have another autoimmune disease as well as RA, no other test done yet but we will see.
I went to an Ostioathritis Dr for 3 years. I had carpul tunnel surgery done. He gave me may anti-inflamitory meds that agrivated my IBS with no success. Then he said he couldn’t help me anymore and to see a RA Dr. So I’ve been seeing one for 2 years now. She only sees me every 6 months. First she said I had scoriatic authritisl. Then, maybe Fibromalgia. Now,, she says no clue. My blood work from several Dr’s show the RA and I just came home from the hospital with a hot swollen knee the X-ray she has shows no cartledge. Me knees crunch when I straighten them. My Drankles just give out for no reason. Now my RA Dr says its general authritus and dropped me. Any advis out there? I can’t keep living this way. I’m a mobil therapist and just driving let alone going into people’s houses has become impossible. I can’t even sleep. Please help!
Lynn,it seems your latest DR.is clueless.Please dont waste time with that fool and find a RA Practitioner that listens to you and that you feel comfortable with.This wont be easy.There is many DOCs out there that are at a loss when it comes to our RA.Practically none of them can agree on diagnosis or treatment.This is your life and the ability to control what happens with your RA treatment is one of the things left now that you should have the most say in.Please read,read,read, about this horrible ,painful, nuisance ,and you will be more informed when making decisions pertaining to your disease.
I was 12 when my right knee suddenly was so HUGE from swelling I couldn’t walk on it. It was really warm too, went to ER and they drained it and sent me off on crutches. Two years later, with my knee so swollen I couldn’t get it through the thigh of my jeans, my dr finally got me in touch with a rheumatologist. Don’t know how many blood tests they ran until a result finally came: RA. To this day, I still have the docs scratching their heads because somehow, miraculously, it never affected another joint in my body until last year. I am now almost 22 and we can’t be sure if it’s my hip or my SI joint or both, but it has definitely spread and I’ve been through almost every med they can prescribe…it’s frustrating when you feel like you’ve hit a wall. On top of all that, apparently methotrexate seems to be the best med yet according to this site, but when I was on it, I was sick for the whole year (colds, flus, infections, you name it, I got it). Life improved after I stopped it, but my arthritis was in remission at the time. Now it’s back with a vengeance and I don’t know where to go.
Hi
I think I have RA but I don’t test positive for it. I’ve been told I have fibro brought on by depression. But…My finger knuckles are swollen. I have other issues that could be attributed to any number of illnesses…fatigue, deep chest pain, brain fog, pain in neck, back, knees, feet, hips, deep tissue pain… I have pain every single day but I’m told it could be anything…so I stretch, swim, try to eat clean, rest, balance my day. Nothing really works very well. I just keep trying…and I feel like I’ll never be Dx’d. I just wish I could feel better. People say, well you look fine…and then some will see me try to walk after I’ve been sitting a while and then they say…wow what’s wrong??? So frustrated.
I am being selfish reading and now writing to you for your help, but I am so sick of the pain in my feet, heels, ankles, legs, fingers and wrists at times. It has been about three years and podiatrists, chiropractors, internal medicine, rheumatologist and still looking for help. My ra factor was high to my primary dr. upset he sent me to a rheumatologist, finally something. the podiatrists and chiropractor did their expensive thing with PT home stuff, and there three times a week after work ugh and total irritation of all painful spots of my legs, feet and ankles. Yes oh many diagnosis, prostetics, a set of xrays after a year of pain, then insoles, nothing was broken finally we know that. OMG money PT two different places year two and half I forget that I have pain it is just life and live with it nothing works but ibuprophen 1000 mgs daily which is horrible, but the pain was worse. sharp stabbing pain when I went to stand one normal morning and omg stabbing of ice picks in both heals. I tried again this was bad this time with tears of agony … then I let it go then it came back in a different way well just worse my legs felt like lead weights and I felt I would buckle and drop on the floor at work at home at the grocery store I couldn’t be normal .. it was so painful. My fingers and elbows and shoulders ached more than the usual too. I often felt like I was sick with a cold or fever or flu, the kids thought I was making excuses not to go to work, but I will get genuinely fevered or weak so bad I can move or fall back to sleep at times. Gosh it gets bad, there was the night that the pain woke me up suddenly going from my feet up my legs then my back and arms and hands and wrists so painful I felt like I was hit by a truck so strange not excruciating but it hurt a lot … it fixed itself after ibuprophen it took a day or two though. I was so scared I worried it would happen again.
Now, I go thru a weekend fine with minor pain taking arthritis over the counter Tylenol this is a month after my primary tells me ra, the ra dr does extensive testing and blood work saying the ra factor is very low a 17? as opposed to the hundreds ra patients have?? His testing was all negative including ra gene ??? yet the pain is there??? I was so upset reading about ra thinking omg finally an answer. Today with the severe murderous pain I am in and got last night in the midst of doing a small amount of laundry and straightening up with no force on my feet to coming upstairs for the last time of the evening and I suddenly had this horrible pain in my ankles, heels bottom of my feet shooting up my calf a little, but so bad I almost fell down in pain. I took a shower thinking heat will help almost slipped on the floor, took a presecription ibuprophen the ra dr. gave me nothing helped I was in tears went to bed and woke up feeling like it would be gone but it took a short pain when I stood and oh so tenderly walked then it was intense about ten minutes later up and down from the couch. Was feeling chilled but it was hot in the house per my kids.
My ra dr. gave me a does pack of prednisone I took six as prescribed and the pain is not as bad but it feels like something broke in my foot stemming from the ball of my heel or heel pad which doesn’t hurt upon touch except for a tinge in the achiles in the lower center, but it also feels good when I massage and stretch my tendon. Yes then from plantar fasciitis to tendonitis to RA to now my dr. says I need a pain management dr. who aren’t available until September and October I need something done now. I cant stop working for anything but I can’t cry as I walk at the office either they will call an ambulance on me.
People will think I am nuts, actually I worry that it is in my head, but shoot it hurts so bad !!!!! it keeps going and going getting worse and different but come on three years now … and still getting nowhere. They just want to dope me up without explanation.
OMG I am so sorry but HELP … should I go the ER will they delve into this or just do the essentials and leave it up to my primary with whom keeps pointing me in the wrong directions I am so dizzy darn it.
Thank you for listen / reading and if you don’t think I am nuts, help with your thoughts and experience and understanding.
Sincerely,
Diane
I am still in severe foot pain heels mostly but took six of the prednisone pack my ra dr prescribed yesterday, which is probably why I can manage to walk ever so slowly and lightly today. I was going to go the er but am recalling that they don’t dig deep usually just fix the immediate pain issue and send you to your primary dr. at least that is what has happened to me along with misdiagnosis of flabitis years ago when they said my spiking fever must be a sinus infection, never checking my legs down. Anyway, I have an emergency appointment with an orthopedic today and am praying she will find something. I read that tendonosis and tendonitis are both temporary conditions that they heal if you take it easy. Its been three years and I have taken it easy and have gotten very fat from it too. I am and have been unable to shop I hold onto the cart for my life at the grocery store and not with my fingers clenched either that hurts now too. I am too weak to carry my purse for very long my kids help with the groceries now, thank god its been years that I am so weak and in such pain including my back after my feet (heels and ankles and legs) are so sore that I come home and flop on the couch with my legs up. I have pushed myself over and over again all this time to do normal things but now the pain is different since the ra dr first saw me and now tells me my levels are too low to be ra it has to tendinosis … with which I can’t agree. he wants me to see pain management drs who won’t see me until September or so and my prednisone pack will be done in four days then what will happen … I have to work or I will lose my home!! My kids depend on me … I am 55 by the way and this started out of nowhere after doing nothing one morning when I went to stand up … about a month ago after the ra dr took me off the prednisone schedule he prescribed which by the way relieved my pain for the first time in all these years (God I was so happy, I found the problem) I was awakened by severe shooting sharp pains from my toes to my neck while in a dead sleep. Just about crawled in tears at 5am to get my motrin and eventually got back to sleep and woke up with fatigue and a little pain in my legs and feet, but it was apparently an attack of some kind??? Now it started out of nowhere on Sunday night after a hard day of doing laundry lol (really not that bad at all) and on my last trip from the basement up to my living room I suddenly couldn’t stand on my feet due to the pain in my heels and ankles my legs didn’t feel like they would hold me up in such pain… laid back down on the couch legs up. it wouldn’t go away so I took motrin and went to bed for the night. Still a throbbing stabbing pain in my ankles both of them. Monday morning felt ok got out of bed slowly then on my way into the kitchen my left foot was attacked again by whatever causes this pain I couldn’t stand on it at all. The right was hurting just a little which is probably bad to the average person but I have lived in pain for three years I have a high threshold for it. NO explanation as to cause or even what it could be from my ra dr. except tendonosis which cannot be the case I did nothing to bring it on and this pain is different than my first pains diagnosed as faciitis, then after the mri tendonitis, then ra, now tendonosis ok I don’t believe any of them! I am so sick of being sick and yes I have constantly had flu like symptoms since this pain started and yesterday and today I actually have the chills and it is 92 degrees outside. I have goosebumps due to feeling cold. Lying down releaves some pain but the throbbing stabbing out of nowhere keeps happening. my feet don’t hurt to the touch at all but there are swollen spots and distortion of my ankles and heels, my kids say I look like I have camel feet my achiles heel protrudes about an inch or more and there are blobs of what looks like fluid around the front of my ankles causing an ugly appearance but it doesn’t hurt to the touch?? I only hurts on its own speratically while lying down or if I sit or stand with any pressure on them its horrible pain and only having to look forward for it to get worse as the day goes on without aggravation (pampering myself on the couch all day or just driving to the drs. office). Every time I stand I have to be very careful afraid I will fall on my face due to the pain that “may” occur.
Lord knows yes I am fat now but I did not get this way before the foot pain started I can’t walk or excersise or stand or sit for any length of time. I have expensive running shoes that hurt, two pairs of expensive insoles and many diagnoses but nothing explains why I am hurting from one degree to another and for so long… I need an answer and these darn drs. are not giving me one that really works.
My first pain was in balls of my feet. I just thought maybe I ate something that made them hurt so bad and swell that I could not even wear my shoes. Then one night I woke up in bed with extreme shoulder pain! Nothing I did took pain away, I couldn’t even lift my arm. Then it did the same to my other shoulder. I then decided I needed to see a doctor .
that is eerily similar to my story Autumn.
My Story! I am 62. I started with RA in my hands when I was in my 20’s. It would flare up when rain was coming & my co-workers would ask me from time to time if it was going to rain that day. Back then it was “funny”. Since then, over the years, I have developed pain here & there but have always seemed to handle it. Today, I can still shower & walk around my house but I have to use a wheelchair when out & about. I feel fortunate that I can still shower & walk around my house, though. I picked today to write this because I am having a bad flare up & for some reason I can express myself better when that happens. Of course, by the time I finish this I will have a hard time rising from this sitting position. My husband is the best I could ask for. He is self employed & works away from home M-F but is home every evening & has taken over cooking, cleaning, & washing clothes. As of today I have RA in my hands, neck, shoulders, spine, lower back, knees & big toes on both feet. Lately, it has started to effect my sleep where it used to not. Oh, did I mention that 3 years ago I was diagnosed with breast cancer, too, that has spread to my spine & other bones? Well, that’s my story & I’m sticking to it. (It never hurts to have a little humor.) I hope they find a cure one day & maybe our descendents won’t have to suffer with this terrible disease like we are.
thank you for writing Evelyn. You’re quite a warrior.
Am 13 and I have been getting pain on my hand,neck, left foot, and my whole right leg.It just keeps getting worst and I don’t know whats wrong with me.:(
I guess my first symptom(s) were extreme fatigue, pain and inflammation in ankles and knees. Sometimes one side, sometimes the other. Sometimes my hip hurt too, or felt like it was slightly “dislocating”. The fact is I really don’t know if it was already RA (as I was also diagnosed for fibromyalgia) but at least both my knees and ankles were inflammed, which the docs told me indicates something else other than fibro (which should only cause pain, not inflammation).
Mine started in my ankles. After Winter was over, I was wearing sandals & when I looked down, my inside ankle joints were sticking way out; they had never done that before. My doctor didn’t think it was anything! Then my elbows and wrists were involved at the same time – hard lumps. One day no lumps, the next day, lumps. I’m having a lot of foot pain right now. It’s difficult to walk, but I have no toe deformity presently.
I have had Fibromyalgia for years so I am used to having pain. A few months ago I started complaining to my doctor about extreme fatigue. Other things were changing also, but I thought it was the FMS and the fact that I am now 60. I make myself get exercise. I am going to be in pain if I do or don’t but I feel better mentally and easier to cope when I do exercise. I changed doctors last month and she listened to my complaints. She ran a battery of tests, she thought I had lupus. I tested positive for RA. I have been reading up on it and I think I may have had it for some time now. I frequently run a low grade fever. I thought joint pain was normal at my age. I had a Dr tell me my pain was all in my head, I knew better. I was hesitant to complain about pain. I had a Dr actually laugh at me because it hurts so bad to have my blood pressure taken. I accept this as part of life, I don’t sit and wonder why me. Why not me? Life is a crap shoot, I can’t get a pass on everything. Anyhoo, I am seeing a rheumatologist next month (I live in a small town and there is only one here withing a 100 miles). I have been doing research on line so I will know what questions to ask and so forth. Any advice?
Man do I relate to your pain as I have been feeling the same for about 12-14 months or so. I have Type II and frankly am embarrassed to even tell my wife of the pain I have because i want to be strong, thanks for sharing
GHB
Hello everyone. My name is Chad I goggled the pain I have been having in my feet and this site came up. From what I have read most of y’all have exactly what I am feeling. I have diabetes and have been diagnosed with neuropathy. But lately with all the nerve pain I have been have been having the worst bone pain in my feet. It feels like the bone is going to poke through the bottoms of my feet. And it’s not just one foot it is both. My feet bones feel like they are breaking and I am pretty worried. I have a very active 10 year old with Down syndrome and I am getting more and more worried every day that I want be able to play with my little man. I am a 38 year old male. And I am not on my feet all day I actually work for an oil company in Houston and I am behind a computer all day.
Thanks for any help,
Chad
Feet at age 19. Just diagnosed at 47 and waiting for rheum appt.
good luck Jan. I hope it goes well.
I have been reading posts here and I’m scheduled to see a rheumatologist in October. For years I’ve wondered if I was nuts. I would have chest pain, jaw pain but the worst Jenniferwas my feet hurt. I thought it was because I was overweight. I lost weight but the pain was still there in my feet. They swelled at times but again, I thought related to my blood pressure problems.
A few years later, I recall vividly, I was getting ready for work and telling my husband that my back felt weird and stiff. A few hours later, I’m in excruciating pain and at work. A co-worker saw me, gave me 5 Aleve. It didn’t work. I was having extreme difficulty walking. My boss told me to call my doctor and get in ASAP. By the time I got there, I couldn’t walk. The nurse came out with a chair. I was crying by then. A CAT scan revealed a bulging disc, acute lumbar stenosis. However it baffled my doctor. One week later, symptoms disappeared. 3 weeks later, it came back with a ferocity. I was unable to walk again. It took over a week to recover and I was referred to a spinal doctor. He did a battery of tests but was stumped and gave shots in my back. It helped some but I’ve never been able to get back to where I’ve been physically.
A year later, my hips, shoulders, hands hurt. I click in my shoulders, ankles, and inside hip joints. As I’m typing this, my right eye hurts. I’ve checked to see what’s in it but nothing. It’s swollen. Not too bad,
though. One of my doctors did a blood panel but came back normal. I feel nuts and seriously afraid that nothing will come of it.
I don’t know what else to say.
Thanks,
Jennif
I wrote previous post on a tablet and noticed some errors. I apologize for the mistakes.
Jennifer
don’t know what I got, having flu like symptoms. and when it was leaving my body. my feet started to swell and itch. Than my right elbow. also just buy the tail on my back is raised and itchy like my feet and elbow, very strange and random parts of my body feet have got a lot worse cant walk on tham now.im a 37y old man,from
uk
i first noticed ra because my eyes hurt and burned so bad they were very dry.
eyes burn hips hurt
I still don’t know. Had a cervical spinal fusion after a car accident. About a year later, sudden attack of excrutiating pain in upper arms and overwhelming fatigue. Bloods showed raised inflammatory markers, rheumy diagnosed Polymyalgia Rheumatica, changed to RA 4 weeks later. Commenced MTX and steroids. 8 months down the track inflammatory markers are worse, rheumy perplexed with my ‘atypical’ RA and now thinks there’s only a 50% chance that it’s this. Is going to add another DMARD to see if this makes a difference. I have no swelling, just restricted joint movement and pain. Good luck to everyone, keep smiling even if it kills you! 😉
My fist symptom was intense fatigue. Then knee swelling that would come and go. Then ankle pain. Then a loos of grip strength and low grade fevers that would come and go.
Like the writer, I presented with intense foot pain before RA got to my hands, in fact, it was probably the last area to be affected. When I was 15, I had chronic subluxation of the shoulders & was referred to an orthopedic surgeon who asked if I was a ‘ party popper’ ?!?! I never knew what that was until I saw Mel Gibson pop his shoulder out of socket in Lethal Weapon 2! The Orthopod never considered referring me to a rheumatologist, instead he sent me to a physio and told me to strengthen my shoulders to prevent them from popping out again! The subluxations persisted through into my 20’s and I was always referred to physio. By my 20’s I then used to have persistent chest pain with shallow breath and everyone presumed it was asthma but I read about pleuresy and thought it might be that. I ALSO USED TO HAVE INTENSE RIGHT EYE PAIN which used to feel like my eye would pop out whenever there was a weather pressure change or if I was on a plane flight with cabin pressure change. I seemed to go into to a remission into my 30’s but by 35 I began to have intense foot pain which the doctor said was planters fasciitis with another referral to a physio – that same year I would have laryngitis a few times and kidney inflammation, with two hospitalzations. After another 6 months I developed a vasculitis on my leg – I didn’t get hand symptoms until the vasculitis got so bad a dermatologist took a biopsy to finally Diagnose RA – it seems like my hand symptoms were the last thing to present. My RA factor and all other blood markers were off the charts by then. I had foot damage too but thankfully my hands were spared erosion, because they were the last to present after all the other severe symptoms. It is absolutely not true that RA is firstly a hand disease – hand joints do get affected but in many patients hand symptoms can present after many other body systems have been affected. We need to change the perception and the diagnostic criteria for RA. It is not a hand disease – it is a systemic body system disease.
I was first diagnosed primary Sjogrem and secondary Rheumatoid. The ANA was so high when I did regular check up and the doctor thought it was a machine malfuncting. I always had a small bump on my joint on second finger on left hand(that joint was bigger than right hand) on the left side but never paid attention to it because there was no pain.
After 3 years on Methotraxade, my whiteblood cell count went down one day belo 2000. Since then I was switched to different drugs and bio injections. I had a huge side effects on every single of them. I really don’t think my doctor knows anything but switching to different drugs after blood test becasue he even told me to it a try to Orencia by staying on it for one more month when I lost so much hair and allegic to air (in my eyes). I told him that I feel like everything attacks my eyes as soon as I woke up. He didn’t really care. So I stop injecting Orencia syringe. Right now I am seeing accupunture but everytime the rain cloud comes toward to us, my ankle swells, burns, and radiates to knee, and finally to my back. I tired so hard to find a good shoes but nothing really felt right (including orthoheels). I really need help with finding good shoes. I will continue reading your blog to find answers!
I am new to this site , and recently diagnosed with RA,Dec 2012 . Although I am in denial and have just come of the meds (Plaquenil )because I honestly couldn’t see an improvement .
Anyway … I did not have any symptoms in my hands and still don’t. My initial pain and swelling was in my knees,ankles and feet.
My rheumatoid factor was actually really low , so I will have another blood test in 2 weeks to see if the R factor is any higher or Lower.
My feet were first for Many years. Next was one shoulder iI remember thinking I MUST have dislocated it because I woke up one more on a trip in agonizing pain. Next were my hands which were pretty bad for a couple of years and then almost magically my hands were pretty much wokay for several years( good th ng as I was a violinist.Then, after a 6 month course of Lupron for endometriosis I got hit full force to almost every joint .Eventually it ended my career as a violinist. The fatigue and all the just general feeling like cr.*^ was just as much a factor in my having to stop work. By the way, when I went to a prominent hand surgeon for a carpal tunnel release, I was told point blank that ” I couldn’t have RA because my hands looked “fine”” At that point I had already had full rheumatoid fore foot reconstruction on both feet, an astronomical RA factor , etc. etc. it took over 10 years to get a diagnoses. My family doc told me it wasn’t RA because I did n’t had e an elevated sed rate. When I finally made it to a wonderful rheumie, he was shocked that I had not been diagnosed. I was one of the first to take Remicade, but was very unfortunate to be one of the ones to develop septic shock( 6 weeks in the ICU) . I was too scared to try another biological for almost 10 yrs. I am coping much better these days.i take Cimzia which makes a significant difference for me. I still deal with pain all the time, take more prednisone than I wish, and have to carefully choose where to spend my energy. But, I finally feel like it doesn’t completely rule my life. I am almost done now with a degree in a whole new career. I hope to be able to continue to manage to eak out a little bit of life. My husband coif 17 years could not handle the disease, and now I wonder if I will ever find someone who will be able to cope with the demands it places on a relationship. RA is like having an extra full time job. But I am happy to finally gotten to a point where I am not in a terrible depression because my illness is so devastating. Really, people just have NO iIDEA!! I am very lucky to have an exceptional rheumie now( Mayo Clinic, Jax) who was nice enough to give me his email address so I could always contact him- I would have never had the courage to try another biological without his support.
If looks like it’s been awhile since anyone posted here, but wanted to say that I am so happy to have read your comments. My RA started in my feet 7 years ago. I spent the first 4 thinking I had “hurt” my foot while walking in a Christmas parade. Now, it’s in my hands. Even after diagnosis, I still doubted the doctor because I had never heard of anyone getting RA in their feet first. I thought it had to be in your hands or it wasn’t RA. Thanks for sharing your experiences. It helps to know that I’m not alone.
Early connections??
Mom had RA. She passed away from “complications of RA”, namely heart failure. She was 68. She was told she had Sjogren’s, (Dry eyes. Your eyes may burn, itch or feel gritty — as if there’s sand in them. Dry mouth. Your mouth may feel like it’s full of cotton, making it difficult to swallow or speak.Some people with Sjogren’s syndrome also experience one or more of the following:Joint pain, swelling and stiffness, swollen salivary glands — particularly the set located behind your jaw and in front of your ears, skin rashes or dry skin, vaginal dryness, persistent dry cough, prolonged fatigue.
As it turns out in the end, she was having difficulty swallowing and was told she had to have surgery for a feeding pipe. They “accidentally” cut her colon while doing the surgery,creating another need for another surgery. She passed a week later.
My Early Connections?
“Growing pains” excrutiatingly while growing up. My mom would have to give me “baby aspirin” and rub my legs until I could fall asleep again.
Allergies?
Strawberries, apples used to make my face tingly and strawberries would make me break out in hives. Orange juice always seemed too acidic.
Migraine headaches when a teenager and through my 30’s.Major Migraines.
Unrelated to RA but adding to the migraines and chronic neck pain, I have been in 5 car accidents and one dirt motorcycle accident (Thank you LA!)
In 2003 I was diagnosed with RA. Even though I had prior knowledge about RA through my Mother’s experience, and maybe even BECAUSE of it- I was devastated.
Knowing how it can consume your life in the most intimate ways. I no longer feel that way. Thankfully, I have come to regard my life experience more than the disease. With that I continue to be my best me whenever possible, however possible. I have found new ways to adapt and new ways to enjoy things I might not be able to do as easily as before.
I went to the doctor because of illness, fever and malaise etcetera, that was not going away. At first I thought I had the flu. Maybe even Dengue because I was bitten by mosquitoes prior to getting ill and there had been an outbreak in Hawaii. It got to where I was laying on an air mattress on the floor, because I couldn’t get in or out of my bed. It literally felt like all my bones were pulled out of their sockets. I felt like the Halloween Skeleton Decoration. Definitely bone on bone pain that has been described by others. It was body wide at that point. My son was coming out to visit which usually consists of visiting favorite places for nature in Hawaii Nei and places to eat. I was horrified at the idea that I would be laying on an air mattress in the middle of the living room for his visit! I was 45. So I went to Straub. (I slept on an air mattress with a 4” memory foam on top, to help with the shoulder pain for years, now just on a platform with memory foam mattress.)
I did some tests which came up with the RA factor shot up. (Interesting to note, my Mom had been diagnosed with RA in the 70’s –her late 40’s., so I was familiar with the disease, symtoms, and treatments at the time). I was given prednisone, Celebrex, Vioxx, Plaquenil and any other “info drug” in a commercial of the time. I took (prednisone) for about 1 year and a half. I weaned myself off of prednisone in 2005, because I was needing more and more, earlier and
earlier. 5AM, 4AM, etc., and having more pain.
I Saw a book Entitled “How to Eat Away Arthritis” by Lauri Aesoph, N.D. I did the 7 Day Purification Cleanse” and followed the plan accordingly. I was pain AND drug free! I
also visited more Naturopaths at this time. One of them told me that one common denominator in his RA patients was constipation. That I was since childhood!
During “flare ups” (which did occur in different joints at different times) I persevered by changing diet and taking aspirin as needed. My feet and toes would cramp up.I was also extremely anemic so much so, that one of the doctors called my house at night, (speaking with my partner at the time) expressing his deep concern at the severity of the anemia and the immediate need for iron supplement.
I was hospitalized in the emergency room for kidneys throughout the years (first at 18, again at 20 and again at 52 for an emergency stone removal which became infected a week later) I ended up in the emergency room with history of kidney illness, and also ended up in the emergency hospital from passing out also. Too much bleeding, rectally and menstrually. Getting weak going through menopause, etc.
The symptoms and disabilities were and are as follows:
During these times I was weak, thin, extremely fatigued. In chronic pain in various joints, alternating their locations periodically. There are days when I cannot open a door knob, turn the key in ignition, dress myself whether pulling up jeans, fastening the buttons on pants or tops at etc. I have flare ups where my hands won’t work properly. No digital strength or coordination whatsoever. Cannot pick up a coin, a piece of paper, etc.. My feet get to where I cannot walk.
The top of my feet feel like they are collapsed and do not work properly and I certainly couldn’t wear or walk in any shoes that had even the smallest heal.
I have chronic swelling and pain in hands, wrists and feet. I feel like a pain barometer- if it is a cooler moister climate, painful.
Opening bottles cans, even milk containers, prescription bottles, pulling up and fastening jeans, turning a door knob, driving, turning the key in the ignition, holding a file, a book, a cup, a plate, writing, typing, cooking not so much because it is too hard to hold pots and pans or a dinner plate. No more favorite recipes unless I’m directing!) I usually warm frozen vegetables (things are hard to cut!) and make rice in a rice cooker or I get a “plate lunch” for the meat, and get pre-made salads. Carrying grocery bags usually gets me some wrist pain and some good bruising the next day. When the grocery clerk asks “If I need help out to the car” I always say “No it’s when I get home that I’ll need the help!”
While driving, pedals are hard to manipulate. If your feet are swollen, they do not work properly. The neck is always in pain like it is cemented together, all in 1 piece. I feel inadequate in turning my neck efficiently to keep a safe eye out. Prior to being diagnosed with RA, I’ve been in 5 car accidents and 1 motorcycle accident in Los Angeles (No don’t worry-I swear they were not my fault! Mostly getting rear ended.). Throughout the years, sometimes due to the
stiffness of the neck, it pinches the nerves and causes me to be dizzy or pass out. Now I’m getting nodules which are hard like bone, not like a cyst. These again inhibit the limb from working properly. My wrists have been permanently
misaligned and swollen for years. I have worked many years in offices, even at home but it increasingly got worse and became more difficult for me to type or using mouse etc. At times I would be in tears from the excruciating pain and have to soak my lower arm, wrists, hands and feet in hot epsom salt water to gain temporary relief. (My partner prepared everything and watched me in agony, feeling helpless to do anything.) I don’t take pain pills.
The prescription that I take (prednisone, methotrexate) would usually make me dizzy and nauseous so I would have to get up around 4 or 5AM (much earlier than necessary!) take them and lay down for an hour or two before attempting anything. This makes it hard to be prompt to jobs, appointments, etcetera. I worked from home doing various things because it wouldn’t matter if it took me awhile to get going.
In 2009 my part time work at home jobs ended and I went out to seek work. I worked in an attorney’s office for 2 weeks. My wrists were swollen and I was unable to do any more typing after a 6 hour shift. I went back to the doctor for the RA and agreed to take prednisone to get through the day and so I could work. I am also taking methotrexate (chemo drug) which makes me feel really tired and ill for about 2 days after I take it. I took a retail job and hung in
there for as long as I could until the same symptoms mentioned creeped up again especially wrists and feet standing and walking, 9 hours a day 6 days a week.
I have cysts appearing at times and sometimes it feels like my foot bones are shattered. Everything bruising easily and swollen.
I used to have a photography business which I loved but I can no longer even hold the camera and lenses.
And yes, the “you don’t look sick” factor! It is a rare find that someone actually understands that “Yes, I (used to be SuperWoman/Mom!) really DO need help opening, turning, fastening, pulling, pushing the ____.” Or at a convention- the “macho handshake” ouch! The accidental step on the foot. My mom both babysat for me for all 3 of her adored
grandchildren and feared their youthful rambunctiousness, that when they would come running over to her, that they might bump into or step on her in some way. She
handled it all excellently! Bless her Heart!
Presently I live alone with two small dogs. I am sometimes afraid when I get dizzy and pass out, no one will find me. My kids are grown and live on the mainland and I am no longer with my boyfriend who helped me thru the emergency situations in the past. It can sometimes happens when I just bend down to pick something up or while doing housework. Or if I do not give myself some time after taking the medication, it affects my ability to read, to work on the
computer, etc. My vision has worsened, seems like a hard correction to get right with glasses computer etc. I’ve also gotten cataracts. I used to love to read books but cannot really do so, so much anymore like I used to. It makes me dizzy and sometimes nauseous. Oh oh sounds like a commercial for Life Alert!
Oh and I REALLY miss my Hot tub- the best natural pain reliever!
Almost 4 weeks ago, I woke up one morning feeling horrible…flu-like symptoms, low grade fever 99.1-100.3, hands swelling, pain in hands, shoulders, ankles and knees. I also have had no energy, so tired and unable to do my normal day to day stuff. I work and go home and crash on the couch. Since then I have seen the doctor 2 times. 4 weeks ago my Ra factor was negative, the ANA was negative but my sed rate was elevated and C-Reactive protein was elevated, the doctor said it was viral and to take 800mg advil 2xday. 2 weeks later I went back, still having the same problems, she did same blood work again, same results except C-Reactive Protein was slightly higher then the last test, the doctor still says its viral. I asked about RA given my symptoms and she said No that my test are negative and that no RA doctor would treat me as RA for that reason. She did put me on a prednisone taper for 10 days. I’m on my 6th day. This has given me a whole new set of daily symptoms (heartburn, bad headache). I do have a little more energy, but still very tired. My swelling and pain in hands and knees have gone down until afternoon. Fever has about gone, but still have low grade in evening. My question is….could my doctor be wrong and this is RA? should I push harder for her to send me to RA doc? I figured I would just give it some more time, but even as I type my hands are tingling and numb feeling from swelling.
RA started in my feet, of course I didn’t know it was RA. Every morning it would take me at least 3-4 hours before I could walk with no pain…but most of the time I always had SOME pain in my feet.
Mine started out in my toes. Then my spine. Now my shoulders, elbows, wrists, hips, knees, ankles, jaw, in that order. I need to schedule an appointment with my eye doc because my sight has gotten so bad that I can no longer see anything more than 3 feet away. Blob of jelly is what anything looks like. Depressing…and the joint pain and muscle spasms never go away.
Hi Abby
im so sorry to hear of your suffering.
I read your post and I can really relate to what you describe especially about that fluey-burning all over feeling. Whilst I might not be able to make your suffering go away please feel rest assured that u are not alone.
PLEASE now u have found this site and read all the info do go back to your DR as it sounds as if they’ve missed all the important tests! And don’t give up, you can always have a rant here if you feel like your going mad 🙂
Take care 🙂
I have not been diagnosed. I don’t have health insurance and sounds like the medication for treatment is very expensive without insurance.
Thank you so much for this website, regardless of not being diagnosed, it is because of this site that I don’t feel alone, that my physical symptoms make sense beyond being over weight and getting older and falling apart. This will give me direction for when I do get health insurance.
I’m currently 41 years old, my first noticeable symptom now that I found this site and it puts it all together for me, was back in 2002/2003, while at work where I sat at a pc all day, my right leg would ache, feel warm/hot and the only relief I would get was flexing my leg and my knee would crack. It was annoying, but something I just lived with. It became “normal” to me.
It still does that to this day…my next big moment if this is indeed RA, was when my mom passed away in 2009. I went to the amusement park with my kids and I could hardly walk by the time I got home. My heels hurt so very badly, like they I was standing on rocks and also the tendons on the sides of my feet hurt and stiffness radiated up the back of my legs. I blamed it on wearing bad shoes to the amusement park and my weight. This pain continued for at least a month. It went from both heels to just my right heel over that time. Every morning I would hobble around till the stiffness would work itself out. I ended up going to a podiatrist after about a month who told me I probably had plantar fascitis, but didn’t do x rays since I had no insurance and told me to go to the Dr. Scholls machine in Wal-mart for inserts. I did…they didn’t help.
During this time I started to feel hot/warm all over my body quite often. I would sit down and my body would just hurt so much, like a flu, like I was on fire inside. Also, I started getting pain in my hips…I didn’t understand what was wrong, but I just dealt with it.
About a year later my so called plantar fascitis finally subsided completely, it went from both heels, to just my right and eventually appeared to “heal” itself 🙂
In 2011 I decided I would join a gymn and lose weight and get in shape. I did a 2 week trial, it was a kind of “old school” program where the instructor was a lot like a gym teacher, running laps, push ups, situps, throwing balls and ropes and such. After the 2 week trial I didn’t join right away, my sister from Minnesota was coming to visit me. She visited for a week and then when she went back I decided to join the gym. The first day that I joined, it was just me and some young energetic girl 🙂 The instructor had us warm up and then run and then on to jumping jacks…well she did hers, it was timed to see how many we could do as fast as we could…I was partway through when a loud pop came from my knee and I went down. I couldn’t walk without my knee feeling like it was seperating. I went to the doctor, but nothing beyond an xray because an MRI is expensive and I would have to pay out of pocket. So I had a whole leg brace (donated), wore that for a couple of weeks, and then I was able to walk again without my knee separating. It is still not healed correctly today and I get stiffness/swelling/heaviness in that leg.
Additionally I have pain in my right shoulder. When it first started I couldn’t lift my arm very far up and it was painful to dress myself…now it is just a dull pain that hasn’t gone completely away.
During the summer of 2012 I developed a breathing problem (about when my right shoulder started hurting), any exertion and I am out of breath and wheezing. I’ve never had any asthma or allergies, so it is completely new and I didn’t have this condition when I did the 2 week gym trial membership. I still have this to this day, it has never gone away. I did go to a Doctor for the breathing, they did a chest xray and an EKG, but didn’t find anything wrong. I was prescribed a couple of inhalers…I don’t use them, I just don’t exert myself too mcuh. I don’t know if it is RA related, but from everything that I have read, seems like it could be, assuming I may have ‘it’.
The only other symptoms that I have is painful fingers/hands, numbmess/tingling sometimes and my feet still hurt a lot…not the plantar fascitis/heel pain, just aching all along the outer edges and on top. Joints that pop/crack more often…Whenever I do something like bathe one of my dogs, or go out and pick up dog poop, or do anything that shouldn’t be considered overly physical, but a slight notch above doing nothing, I feel it, like my body seizes up on me… I feel very old and like I’m falling apart. I see people older than me who are active and I know that what I feel just isn’t right. I used to think that I wanted to live to be an old woman…now I don’t think I am capable of living to a ripe old age, I already feel old.
Again…I don’t know if I have RA, it just sure seems to make sense. I was actually happy to find this site, because I don’t feel crazy anymore. I always felt guilty for hurting all the time, like I was turning soft and weak, it really makes a difference in how I live my life…I thought I had just let my body “go”…I see now that maybe it wasn’t anything I did or didn’t do.
Thanks Again for this wealth of information!!!
I have had knee issues since I was 13, and was diagnosed with chondromalacia patella since I was extremely active and there was cartilage damage. I am now 19 and there are days where I can’t dress myself or bathe myself due to widespread joint pain. I’m always so tired, even after sleeping 11hrs. I feel like I’ve been robbed of an enjoyable pain free life. I went to my GP recently(during a flare) and he said it was RA and referred me to a rheumy who I go to in a few days. Hopefully I’ll get some relief! Good luck to everyone out there struggling with this disease!
Hi
I am new here and would really appreciate your opinions.
I am 28 and none of my friends/family can relate to whatever it is that is going on with me so I am frustrated at times as would love to talk to people whom I can relate to:)
Since I was about 20 I have niggles with back problems and sciatica (mri confirmed prolapsed disc)Then I started to suffer from bi lateral hip pain that woke me in the night, burning and aching,my GP confirmed trochanteric bursitis, this came and went on and off over years and I presumed it was in some way related to my back, always worse before my period. Then I started to get the exactly the same pain in both shoulders,always in the morning, odd, as if id been ragged about in my sleep! told GP was given ibuprofen xrays (they were normal) and nothing more was said about it.Then after my pregnancy in 2010 things got worse. I retuned to work from maternity leave working night shifts, napping in chairs and on floors left me in agony I would stiffen up all over! I was exhausted most of the time but blamed my shifts. 2 weeks before my period I would get terrible pain and stiffness in the mornings in both shoulders and hips as if the tendons and muscles were inflamed, I would feel feverish and generally unwell.The pain would at its worse extend out to my elbows and knees, wrists and knuckles intermittently, this would all peak then my period would arrive and everything would taper off for a couple of weeks. I gradually became depressed as I was in pain most of the time yet unable to describe how. When I got up from a chair I limped and hobbled for the first few steps, it was embarrassing at work, lol! After about 18months of this definiative pattern I went to my GP with a picture of a stickman showing all the places where I hurt. He assumed I must have fibromyalgia and refered me to a Rheumatologist. Blood work showed I had a severe vit d deficiency Rheumatoid Factor of 19.6( more than 14 is +ve for that particular lab)Low white cells (neutrophils) and mild anemia, everything else inflammatory markers were fine!. I took all the vit D supps and felt no better!! And had an awful feeling as every step I took was agony that I might just drop dead at any second. Looking after 2 kids and working full time was exhausting and the worse thing was that to look at me I looked completely normal my partner bless him, kept telling me I was just stressed:)
The first app with rheumy I was prescribed anti inflammatorys he said at this point he didn’t know what we were dealing with.2nd app 4 months later was 4 months of hel waiting for it all just got worse my shoulders felt like real damage was going on inside as did my hips,other joints hust intermittently but the shoulders hips legs and ankles were 99% of the time. I was given a steroid injection in my leg a systematic on…and HELLO LIFE AGAIN!! Waw the result was almost immediate!I had an amazing summer, chased round after the kids went through the day with out nodding off after lunch! I was started on hydroxychloroquine and have been on them for 6 months now but for me the only real relief I get is from steroid injections which I can only have2 per year..boo! The big prob I have is lack of diagnosis as I have now swelling (except from shoulder that wasn’t swollen on on the day of app!!)Rheumy says its inflammatory arthritis but not typical of RA as my hands are minimally affected I do have a painful bunionette of late on my little toe im not sure if this is related but that is red and swollen. He said at my lasy app that it may be early RA.
So…..im so sorry to have gone on for so long but I would love to know what your opinions are (if I didn’t bore u to death already, haha)
As reading all the RA first symptoms, not may are “typical” Does my story sound similar enough to fit the Early RA diagnosis?
Thank you for reading.
Warm Reagrds,
Stay Strong x
Hello — I can also add that steroids helped me whenever I went in with a huge flare up in the beginning. But the last time, the steroids only helped mildly, so I don’t know what or why, but I agree with you. When they did work it was like heaven for a little while. 🙂
Take care. Hope you have finally gotten a diagnosis so you have a direction and a plan, because it’s really important to wake up every morning and know you have a plan in place. This stuff can knock you on your behind quickly and keep you there if you don’t have your head on straight.
Hang in there!
Helen
Sorry many typo’s main one is.. ‘i have now swelling’ should be I have *NO* swelling and my injection was a systematic *ONE*
:)x
My first symptom started about a year before my diagnosis. My first flare was in my hips. I was at work walking back to my bus and all of a sudden I couldn’t walk. My hips burst into pain. The pain lasted a few hours then went away till almost a year later. I woke up and felt like I broke my right thumb. I went to the urgent care and xrays were done. They didn’t show any breaks. I was sent home. From then on a new joint every couple of weeks but not symmetrical. Blood work was done and my numbers were sky high. It has been rough ever since. The worst pain is in my jaw my feet and my right wrist and hand. So far I am not responding to the meds. Thank goodness for my children. They have been awesome helping me with this. I try to maintain a positive attitude and a sense of humor. I love this blog. I have learned a lot and can relate to a lot. Thank you
Sorry to hear about your RA. Know how painful it can be.
Is this the same Meg that was in my first wedding (to Gary) in 1976? Pastel dress with dots, along with Gail & Lynn (not Lynn F.) is what the bridesmaides wore. If so, hello.
The first symptom that alerted me to go to the Dr was bilateral pain in my wrists.
I’m wondering if this is one of my first symptoms, or even an RA symptom at all. A couple of years ago, my feet began to go numb and began burning like fire. They still do that and it’s very painful if I step on any sort of small, hard thing. I also have certain spots that are bilateral in the tops of my feet that are very painful when touched, but those spots are not necessarily in joints.
Has anyone else had this happen to them?
Hi Jennifer I have tender spots.
if I turn my hands over so theyre face upthe side of my wrists (pinky figer side) each have a tender spongy bump on the side and if I press on then it triggers a nerve in my forarm and makes my ring and pinky finger tingle in a ‘funny’ bone way
I first got pins and needles in my feet and like you felt l was walking on hot coals, l had a young keen newly qualified Dr, who diagnosed me straight away with RA and l balked at that, saying l could not possibly have any kind of arthritis as l was too young, 29yrs, l feet have go worse over the years, but mostly affected, was my feet, elbows and knees and ankles.
Hi Anna and Laura,
I have been researching RA for a while now. When I came upon your post, I intrigued. I too have the same story. I am 36 yrs. old and starting having swelling (or water balloon knees), pain and stiffness in my knees. This was after my partial hysterectomy so I thought it was somehow connected to that. After a few months, things did not improve. My hands started to freeze in the mornings, numbness in my arms, swelling in my feet and a general ache all over. I visited my MD a few times and he ran tests including gout, RA, Lyme, and other blood work. Everything came back normal. He then sent me to a RA doctor because of my symptoms. She ran more testing Thyroid, other RA tests and hand X-rays. Everything came back normal. I am still waiting to hear back from the doctor and have appointments in March with both my MD and RA but am afraid and unsure about what to do next. Since I wasn’t truly diagnosed (even though I know not everyone is) I am worried about starting on medication. Primarily because I donated my kidney back in 2008 and am concerned that the medications will have a negative affect on my body. I am also afraid of running in the wrong direction (what if it isn’t RA) when it is something else like Lyme. I feel stuck and would love guidance. I was hoping to find out how you moved forward with your diagnosis and what happened next. I am open to all advice since I feel very alone in this process and am learning as I go. Thank you in advance!
Dawn, it has been months – I was offline unavoidably. For you or others reading with your question – You need to get a full panel of blood tests because there is not one which is always positive in RA – especially early on. Also if the blood tests are all normal – they could be repeated in a few months. For the most part it is diagnosed by symptoms so you need a good specialist. If there is doubt, you need a 2nd opinion. X-rays do not usually show anything (erosions) early on. Early on the disease is mostly characterized by inflammation – it is later that bone erosion or deformities would show on x-rays.
I agree you need to be careful about medicines with one kidney. Have a good gp or a kidney specialist work with you on what medicine combinations you take. Regular tests of kidney function would be good. And learning which medicines are processed mainly through kidneys (such as nsaids) versus liver (such as tylenol).
I am very sorry it is a lonely hard process with these kinds of symptoms & diagnosis. I hope you are feeling better & keep reaching out so you can know you are NOT the only one.
I am a 28yr old female with several odd symptoms in the past two years. It began with my feet. In the mornings I would wake up and my first steps felt like my bones were grinding together and the pain was intense. Throughout the day the pain would subside and then start again the next day. I, of course, thought it was my shoes so I quickly made that change only to have no difference in pain. My middle toes on the left foot have moved away from eachother – if that makes any sense. Just one year ago I awoke in the middle of the night with excruciating shoulder pain and I thought I had somehow knocked it out of the socket. I could not lift my arm in front of me and this lasted for days. Finally I got range of motion back in my arm only to have the same exact incident happen in the other shoulder months later. Now the incidents happen much closer together and I am constantly afraid of overworking my arms/shoulders because of this pain. I recently noticed a knot on my left index finger knuckle and it has been there for over a month. I tried icing the finger (wondering if I hit it on something and don’t remember?) only to have it swell up immensely. After reading several accounts of other women’s symptoms I am afraid this might be what has been bothering me for two years… any insight on how to bring this up to a doctor without sounding like a ridiculous hypochondriac? 😉
HI Caitlin I’m sorry I was offline a few months unavoidably. I am reading hundreds of comments to catch up.
You do *NOT* sound ridiculous to me at all because what you said is familiar to my own experiences & what I”ve heard from thousands of other patients. I hope you have found a doctor to help you. It is hard with these symptoms to fight off that feeling that you are being a hypochondriac because it is so severe & strange that it’s almost impossible for others to believe unless they experience it. Several articles on RAW discuss this https://www.rawarrior.com/the-hypochondria-of-ra-pain-do-i-smell-an-elephant/