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
My onset was more traditional (hands) but I also had difficulty walking because of ankle pain. Mine came on almost overnight. My infant daughter had Hand, Foot and Mouth which she passed on to my 2 year old son and myself. After theirs passes, mine was still present but I had difficulty walking due to ankle pain and severe hand pain that made it impossible for me to hold my baby, feed her, or dress her. I called my doctor and she said that Hand Foot and Mouth can cause arthritic type of pain and to call her in a few days if it didn’t go away. In two days, she called me and asked if the pain was any better. I told her that the Hand Foot and Mouth rash had gone away, but the pain had gotten worse. She asked me to come in for blood tests. So I did and she called me the next day and told me she needed to see me in her office. Then she told me it looked like I had RA, which of course I did not know what it was at the time.
That is a very interesting story, Christy. I’ve not heard one like it. Actually, with all of the stories that I’ve heard, I’m not sure anymore that there is a “traditional” onset or a “typical” onset.
Since I am a secretary, my hands got it first. I thought it was because of the way I “pushed” myself around my U shaped desk. One thumb, then my other thumb, then a pinkie, then palms of hands, then big toe, then other big toe, elbows together, knees together, ankles. My jaw was the worst. But it did start in my hands. My dr thought fibro, rheumi knew better! : )
That makes a lot of sense Jacqueline. Glad you got a good rheum doc and a correct diagnosis. Funny how GP’s do not recognize RA – hoping to find a way to change that.
I the doctors all diagnose Fibro. Then we wait until the pain gets worse, and our symptoms get worse and we start demanding answers. I upset my doctor when I wanted more answers…He thought I was saying I did not want treatment. I want treatment but I want to know what I am taking and what is going to happen next. I fight to keep the depression down and keeping thinking positive, but it is difficult with the pain
My first symptom was pain in the bottom of my feet. I work out everyday on eliptical or treadmill and actually started wondering if you could wear your feet out. Diagnosis explained a lot. Was first diagnosed with pallindromic arthritis which morphed into RA.
Hi Denise, “wear your feet out” – Haha – that is pretty much what the doctor said to me in the beginning.
My RA started with my feet. Ankles started buckling as I walked down or upstairs. I began to hurt all over like I had the flu. I was SO tired. Found out that I had RA and Fibre Mialgia. So, I am dealing with two different issues and have pain meds that help IF I take them. If I don’t, I have to pray while I wait for the pain pill to kick in when I finally take it. I have started to realize that pain pills will be a part of my life and I can no longer feel guilty about taking them.
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OMG I agree. I am so thankful for this site. I have someone I can talk to that understands what we are going through. I try to ignore the pain ad carry on with my life. But being tired is the worst part.
Kelly – I just found this site and can’t thank you enough! I am recently diagnosed – seronegative RA. It started about 7 months ago with a confusing set of symptoms. I remember the onset like it was yesterday. All of a sudden I had severe abdominal and SI joint pain, flu-like aches and chills, shaking, nausea and a complete loss of appetite. I went to the ER thinking I had appendicitis (negative). The ER doc thought it was kidney stones (nephrologist said no stones). Then a few weeks later I developed hip bursitis in both hips. It felt like hot daggers were being twisted into both hips 24/7. I couldn’t sleep and walking was extremely difficult. By this time, I had seen numerous doctors and was a mystery to all. My GP prescribed a muscle relaxer and celebrex and tested me for HLA-B27 (I am negative). The hip bursitis did not go away and I was referred to a rheumy. He diagnosed hip bursitis and gave me a cortisone injection which worked wonders. All of my blood tests were normal. I was also seeeing a gastro to check for IBD, and all was normal. A month later, the bursitis came back in full force. I took a medrol dose pack and that helped for about two weeks. About 5 months after onset, I started to feel carpal tunnel in both wrists while at work. Three days later, I woke up with both hands clawed, hot and red. Then it moved to my ankles, toes and achilles tendons and now I have plantar fascitis. After the hands and feet became involved, the rheumy declared seronegative RA and put me on a prednisone bridge until the sulfasalazine kicks in. My symptoms are confusing because the SI joint is involved in a major way, and that is more typical of the spondys. I seem to have a mix of spondy/seronegative RA. But regardless, I am happy to finally have proper treatment.
Hi Marie! Welcome to the site. I’m glad you found a rheum doc who can put it all together & treat you! I hope that treatment works. With that many joints involved, they might add methotrexate if that does not do the trick. I know what you mean about SI, but it’s not that unusual – I’ve met a few who have RA there, and I do too. Maybe someday they will have the categories clearer – the ones we have now have not been around that long – like you said: as long as you have treatment!
Thank you Kelly! This site has been extremely helpful to me. I read over and over that the SI joint isn’t typically involved in RA. There is so much conflicting information out there, and it’s especially confusing to me as a seronegative who has 1/2 spondy symptoms and 1/2 classic RA symptoms. Sometimes I feel like, since I don’t fit neatly into one box, that I’m not taken as seriously as those who are positive RF or HLA-B27. I would love to know if there are any specific seronegative RA support groups out there. Thanks again for your contributions to the RA community.
Marie, have you read some of the posts on this site about blood tests? I honestly believe that the negative Rhematoid factor test is often a function of an imperfect test or test process. We have many! Rf negative folks in our community and AS and JRA, too… However, I know many others who are Rf postive who were counted as “negative” at one point! The test result varies over time & with treatment. Mine was both postive & negative at times also. I understand this issue of “second” class or not being taken seriously. Folks who have a normal result on CRP or SED go through the same thing, actually. (Oh- see the Tags list for “tests” to see more posts related to that issue.)
tell me, will I ever get over being tired? If allowed I would sleep all day and night. I can hardly walk up my stairs any longer. Tell me this will get better. I cannot explain to people what we have as they think in terms of arthritis. This is so much worse. The flu like symptoms was a good explamation.
I woke up one morning feeling like crap. I ached all over and I had to drag out of bed. It felt like a bout of flu from hell. Within 24 hours, I was running 102 degrees of fever & I was certain that I had the flu. I was even a bit angry, because I had gotten a flu shot. It wasn’t until a week later that my hands & fingers swelled. I couldn’t open & close my hands, or even move my fingers. I didn’t have enough energy and/or ability to literally lift a sheet over me. The pain, from my fingertips to shoulders, was intense. I had migraines as a kid and I thought I knew pain. Nothing compares to the pain of RA. It is consuming. My rheumatologist made the RA diagnosis, after the usual bloodwork. I immediately began treatments of Methotrexate. I still have trouble with fatigue. I’m stiff every morning. The fever comes & goes — usually with joint swelling. It’s been nearly 2 months and I still cannot fully close my right hand. Progress is happening, but it is a slow process. I still find myself thinking about how RA hit me. It was so sudden, so fast and so brutal. I would’ve sworn, at the time, it was the flu. Now, I know that you can never assume you know what’s wrong with you.
Thanks for sharing, Julie. This post is one of the most used resources on the site. 🙂 Hope the mtx works well & soon.
You are making me remember those months of searching to figure out what is wrong with me. Makes me realize why people keep commenting on the blog “now I don’t feel crazy anymore” – did you ever feel like that?
Julie,,,,I just kept telling my husband that there was something wrong and it seemed like I would get the overall flu like symptom like it was my period or something. But this was worse. I knew it would last at least a week They treated me for Fibro for a long time. Not that the RA is in full on attack mode, I am trying anything to get rid of the pain. After two hours at work, I just want to come home and sleep. You cannot explain this to anyone as there is NO BLOOD…Nothing to show them that something is WRONG. It is crazy. I have not had disfiguration yet. Very fortunate. But the pain is enough to say…I have had enough.
I can’t say that I ever had that “crazy” feeling with RA, but I was fortunate (hard to imagine I even used the word) that I had been diagnosed with Fibromyalgia 9 years before the RA. So, I had a rheumatologist already in place … to call … an office to get into quickly, etc. I knew it wasn’t Fibromyalgia, or the Flu … but what? I didn’t have to go through the unknowing, an assortment of doctors,etc. From the initial day of feeling bad to the diagnosis of RA was less than 2 weeks. In that respect, I was very fortunate.
However, it took 20 months … 5 doctors … 1 neuosurgeon … with 5 different diagnoses … to even get me pointed toward Rheumatology with the Fibromyalgia. I never thought I was crazy, but I did think that whatever I had would kill me before I found out what it was. I actually made my husband promise me that, if I died, he would request an autopsy for our son’s sake.
Now, with Fibromyalgia and RA, I find myself hoping and praying that my son … my grandchildren … never feel the pain and frustration of either illness. As a mother, do you find yourself concerned with that?
Yes Julie, since RA is in my family history, I do. I watch them w/every complaint of unexplained pains hoping it will never be this. Hopefully, each generation will have it better with diagnosis & treatment/cures. It’s good to hear you say it – I never felt crazy either, but I hate being able to tell that others thought it was my imagination. Still, most people I know don’t take RA seriously. Maybe that has been for a good purpose – it keeps me at the keyboard…?
Yes I sometimes question if my kids will suffer with RA. My daughter has Lupis, so they tested me for that right away. They said no Lupis. BUT, I was told you had to be in the midst of Lupis for it to actually show up on the blood work. The RA was serious and I also have Fiber Mialgia. So, the heat all over my body happens and I could just die. Then if I don’t take my pain pills forget it, I am an hour after taking them to get my peace back. I never felt I was crazy, just under diagnosed. I wondered what was wrong with the doctors…Did they think I was playing a game with them? I am living with pain and know that I can find myself through this. People need to understand the pain associated with this disease.
Hi Everyone:
I am newly diagnosed as well. I couldn’t hardly walk due to the pain in my feet and ankles. I was getting cortisone shots in my feet and my Foot doctor recommended that I see a Rheumatologist after taking my x-rays. It turns out that I do have RA. Right now my Rheumatologist has me taking Sulfasalazine and Vitamin D. I guess Sulfasalazine has been around for a really long time and they used to give it to people in the 1950’s with RA. They later found out it also worked for Crones Disease and people with IBS. So far, I am having no improvement but it has not been quite a month yet since I have been taking it. I guess he wanted to try me on this one first in the hope it would work because it has the least side effects of all the RA drugs. I go back to him on June 9th. Wish me luck! He may be also putting me on Methotrexate. I would like to know if anyone has ever been given Sulfasalazine for RA and if it worked for them? Please let me know and thank you for this Website. I have been looking for a shoulder to lean on!!!
Tanya-
Tanya, that is one of the common disease modifying medicines used for RA so lots of our readers have used it. If it doesn’t work for you, then your doc will probably add something like methotrexate. Don’t be surprised if that happens – most patients are on combination treatments. Is it helping you at all? I think it’s considered one of the milder treatments. Did you read through the Newly Diagnose Map yet? There is a section there on meds with some links that might help. Good luck to you!
Thank you for starting this website. I am so thankful for it. My family does not understand RA. They can’t see it so to them I am just being weak. I e-mailed them the link to this website to open up their eyes to RA. So far, I have received a very open response. I just need the people around me to be supportive and I know that if I don’t receive it from them, then I can come to this website for support and I appreciate that very much!
Always,
Tanya
Hi Tanya – My thoughts are with you! Our stories are similar. I am newly diagnosed as well. My doctor put my on sulphasalazine with prednisone as a bridge therapy. It has only been a week since I started the sulphasalazine, so no improvements yet. The prednisone works well to keep the pain down, but I woke up with three new nodules this morning. I am vey scared! I wonder if I should be on something stronger, but I am seronegative and I think that is why I was not started on methotrexate. I am also on Tramadol to help relieve the pain, which has been unbearable at times. Again, my thoughts are with you. Please know that you are not alone. Thanks again to Kelly for her service to our community! This site has been so helpful to me.
Thank you for your response. I am so sorry you are experiencing pain right now. Mine has been unbearable as well and they also started me on Lyrica which does help but I am not pain free by any means! I wake up and feel like I am a cripple and like I have the flu everyday. I will keep you posted on the therapy I am receiving and I hope you will keep me posted as well. I have to go to Seattle tomorrow to see the Rheumatologist and I hope he can resolve something for me.
My prayers are with you as well,
Always,
Tanya
I’ve been on Sulfasalazine since last week of April. So far it hasn’t helped me. The RA is getting worse (now it is in my wrists and it wasn’t affecting those joints in April). I see the doc again the last week of this month. I’m guessing I will get changed to mtx. Hope you find a drug that works for you. I think it is one of those things that takes some time.
Diane, I went through all of what you have. I had a colonoscopy and upper because of the reflex and the acid reflex. Yes they found nodules and cut them out. I have suffered for years now with pain that feels like flu. My God why does it take so long to diagnose RA. And, the side affects of the drugs I am not looking forward to. I start a new drug this week and I am not looking forward to yet NEW side affects. My god the side affects might be what gets us.
uveitis.. iritis.. bloating.. pericardial effusion, irregular heart beats.. bloating.. gas… tired… gas….sleep disturbance…gasssssssssssbloat! and sometimes aspirating what i am drinking..and choking on foods/fluids, and reflux, and gas and bloat..did i say … burp/gas/and “southern” gas???
then the pain set in.. but before all that a year or more of the above!!
excuse me for the repeats(gas)burp,pardonme0000hold your nose!
My RA started in my feet around 4 years ago. Eventually in July 2009 after 9 visits in 5 months to my GP I was sent for a rheumatooid factor test. From there I was referred to a rheumy. .The consultant agreed I had RA and I went straight onto methotrexate. Now, almost a year on, I am on triple therapy, mtx plaquenil and sulfasalazine. Was on pred, but have had to come off so that it can be properly seen what state joints are in. I work full time caring for 2 children of 22 months and 19 months, so very physical and lots of walking
9 visits is a bit too many in my opinion – but about par for the RA course. Good luck to you, Barbara. I know it’s difficult.
had a left knee replacement in 2006 and last June my left knee down to and including my foot and toes swelled up and needed a crutch to get around. I went to an Orthopedic, he drained my knee and said my replacement came loose and had to be redone. I had my second total knee replacement done june 2009 and as I was being prepped for surgery the dr came in and I pulled the sheet away and asked him to look at my right leg as it looked the same as my left did when I first went to see him. He said we can only do one at a time and he went on to replace my left knee.
The end of july I was getting around pretty good, the swelling in the right leg went down and the left leg seemed to be getting better. My toes were no longer swelled and the knee seemed to be going down. I should also mention that I had been to the emergency room several time’s before all this happened because I had such pain in my arm and could’nt move it. It traveled down to my finger’s and made them stiff. They gave me prednisone & valium at the emergency room and told me it was a pinched nerve in my neck. This happened in both arm’s at different times & each time with the prednisone and relaxer it eased up.
I had an epidural done for the pinched nerve and my arm’s seemed to be ok. Then the knee problem’s started..
I have so much to say I hope all this is making sense. I’m sorry if it does’nt. So then the end of July 09 I tripped over my puppy’s leash and down I went and ripped the tendon right above my newly operated knee. The beginning of Aug I was back in for surgery again for tendon repair. After the surgery they told me I had an infection and it was MRSA. They let me go home after a week with a pic line in my arm so I could run Vancomycin through it to treat the MRSA.
I was feeling so bad and so drained and the pain I was having in my entire body was making it so most night’s when I tried to make it to the bathroom I could’nt. I dragged myself on my walker down the hall and I was in agony. My husband put that foam pipe insulating stuff on the bar’s of my walker because my hand’s hurt so bad. It got to the point where if I sat down I could’nt get up. I had a leg mobilizer on my tendon repaired knee at the time but the pain throughout my entire body was awful..
I have been seeing a Dr who happen’s to treat RA but never before treated me for that. I made an appt with him and told him I had to see him that something was wrong with me and I did’nt know what. He sent me for blood work and called me back in a few day’s later and told me I had RA. I could’nt believe it. I was alway’s afraid of RA. I seen people with it and alway’s though Dear God please don’t let me get that disease.
My Doctor told me he could only treat me with Prednisone & Sulfasalazine & mobic until the MRSA was gone.
It is now June of 2010 and I am finally clear of MRSA and my RA has been flaring up all week. I went in to see my Dr this past Monday and he sent me for bloodwork tuesday morning to see if he can tell what is going on. Oh I should say I had to stop the Sulfasalazine because I had a reaction to it. My leg’s were all but raw with a rash & I was so depressed. So he switched me to Plaquenil along with the Prednisone and Flexiral.. I am waiting now to hear from him as to what he found in my blood work..
I am scared of RA. I feel so alone with it. I must look at my finger’s a couple hundred time’s a day to see if they are changing or getting worse. Thank you for having this site because I come here to read and it make’s me feel like I’m not so alone with my RA.
I wonder to this day if my first knee replacement really came loose or was I having an RA flare up and it just looked that way. My regular Doctor told me not to have anymore surgery’s until I see him first. It has been a nightmare year…
Thank you for reading.
Hi Karen, thank you for sharing your story. I know it helps people to see what others have been thru. I hope that this next year is better for you.
My mother has been diagnosed with both RA and Fibromyalgia. She has suffered from both for as long as I can remember. She also suffers from foot pain along with knees and hips. When she gets up in the morning it takes a good 20 minutes or more for her gait to return to a relitively normal state. I am 21 years old with no diagnosis of either and I have been having the same issuses for as long as I can remember. I know that there has been recent research that may connect Fibromyalgia to a gentic link, but my question is this: Is RA also genetic? I find myself in constant pain all over my body. At first it was just joints, my knees specifically. Now, as a cook by trade, I have found my hands literally locking up temorarily making me feel like a retard, for lack of better words. I have made an appointment for myself with an internalist with a specailty in rheumatology. I have been struggling with various pains my entire life and I have always been given a painkiller and/or flexaril and shoved aside. Now I KNOW there is something more going on that needs to be recognized. How do I manage to explain this to a dr. and not be dismissed as a drug and attention-seeking adolescent?
I need some comfort. I know I am not alone in my aches and pains, but frankly I’m tired of feeling like I need to ‘trade my body in for a new model” as my mother used to say.
undiagnosed and still in pain.
-Lora
Hi Lora, I’m sorry to hear it. Hope you can see the rheum doc soon? Those are possible RA symptoms. Yes, there is a genetic factor to RA so if your mom has it, your odds are a bit higher. Comfort would be nice, but I understand – what you need is relief. It might help you to read thru the Do I Have RA and the Newly Diagnosed pages on the top menu. There is a lot of info on things you could might need like different tests. Ok, how do you tell a dr? Well, tell the truth and if he doesn’t listen, you tell another one. Many of us have been thru that too – I’m sorry but that’s what we do until we find a good one who will listen. Also, if your joints (or skin) do anything weird, take a photo. Then show the doc the weird locking or swelling or redness. I hope this helps you some. Good luck Lora.
My first symptom was a sore ankle. After 2 days, it was very swollen and red and I was limping when I walked. My family doctor was out of town so I saw another doc in the practice and he first diagnosed me with gout, which didn’t make sense. After 2 days and another doctor, it was thought to be septic arthritis but after aspirating synovial fluid from a very sore joint, tests came back negative. This was also my first experience with all the horrible procedures I would eventually endure because this doctor was not practiced in drawing synovial fluid and it took him about 5 tries and me nearly passing out (and I have a high pain threshold).
By the following week, I was referred to a rheumatologist, who eventually diagnosed my RA after ruling out other causes. Mine was certainly not what would be deemed a “normal” case, in that it started in my ankle and only one side, not bilateral. It was only after about 2 years that it has started to effect my hands/fingers/wrists. Mine seems to have “worked it’s way up from the bottom”.
Hi Amy, I’m having a hard time finding anyone who would be “deemed a normal case.” :O
Hi Amy – I just wanted to say that my onset was not traditional either and worked it way up like yours. Mine started with a flu like episode combined with bi-lateral hip bursitis and sacroiliitis. About 6 months later it moved to my hands/wrists and feet and ankles.
my first symptoms were my ankles and feet and then it went on from there…i was misdiagnosed with gout because i was working alot and the other symptoms i thought were just me being sore from working…i developed crohns disease and RA all at once. major first symptoms were my feet elbows and hands.
Thanks, Heather.
My first symtoms were Eye inflammation my vision flickered as I call it. Within the same week my body was sore like I had worked out. Also hands and feet felt so sore and tingly I am assuming from inflammation.
Thanks Claudia. How long did it take to figure out it was RA?
My first symptom was in feet. I didn’t put it all together though until it started in my hands. I broke my heel in April 2008 (snowboarding accident). I was in a non-weight bearing cast for 6 weeks, then a walkimg cast for another 5. While I was in the non-weight bearing cast the lymph glands on my face swelled considerably. Once I got the cast off and started walking again my foot hurt too much. It was really unbearable. But due to the heel break they assumed it was related to that injury (even though both feet were hurting in a short time). I went to physical therapy, etc. and nothing helped. Then Oct 09 the joints in the back of my hand started swelling and were red, stiff, painful. All but one blood test turned out perfectly normal. I have only one “marker” for inflamation. Everything else was normal. So it took 2 different rheumatologists before I finally had a diagnosis. Apparently most doctors won’t diganose it without all the typical symptoms and blood tests.
Julie,
Yes, that’s true but that’s a problem since not many patients seem to present that way. The “typical” idea seems to be wrong, which the 100 comments here show. Which marker did you actually show? Here’s something you might want to read about “typical” – click here.
I didn’t actually ask which test showed the marker for inflamation. I will ask the doc when I go to see him later this month. In 1997 I have an elevated ANA reading, but nothing high enough to say “you have arthritis”. I got a fibromyalgia dianosis at that time. I’m not completely convinced I have that illness as it really doesn’t seem to affect me like most people. I’m actually pretty flexible and the pain has never been bad for me.
After breaking my heel I figured out I have a high pain tolerance. They had me trying to walk on it since the xrays showed it wasn’t broken (couldn’t be seen on an xray). After finally getting a CT scan the break was discovered and I was sent to an ankle specialist. He said I was by far the toughtest patient he’d ever seen with a heel break as they are apparently normally very painful. I had only taken Advil the first couple of days after I broke it.
They also discovered I had a broken tibia from some previous accident (probably from a car accident I had in Dec 06). I didn’t know I had a broken leg and never went to the doctor for it. But I have a very clear break across the entire bone. Fortunately it looked like it healed okay. When they xrayed my ankle at the mountain medical clinic they asked me when I broke my leg. I said I didn’t know I had broken it. The doctor said, “did you have an ACCIDENT?”. I said I had a car accident about a year and a half earlier. He said, “Didn’t you have any shinn pain?”. I said I did but I just figured it was bruised (like everything else after an accident).
So the article you posted about doctors thinking that RA patients have low pain tolerance was annoying to read (that doctors have that attitude is annoying, not that you posted the article). I obviously don’t have a low pain tolerance and at least I have a couple of examples to prove my point!
No, you obviously don’t, Julie. About your blood tests. Can I make a suggestion? It’s good to ask for a copy when they are being ordered. It’s really good to have them for future reference or if you ever move. By the way, I still have the same reaction every time I read those pain threshold articles – good healthy annoyance.
In January 2010, my first symptom was in my hands. It started as an irritation – they felt bruised from too much heavy lifting – how does that happen? Then the fingers swelled up like sausages -I couldn’t snap a bathrobe, lift a glass, open a door. After much blood work, my GP sent me to my Rheum. I’ve been on pred.and naproxen until just recently. My CRP levels were back to normal, and she was decreasing my pred. I was so encouraged! I had no pain! Then, about 6 weeks ago, I had a flare up – this time in the balls of my feet and toes! What is up with THAT? My hands have been stiff, but that seems to go away during the day, but the feet thing…they just feel tight most of the day – worse when I wake up. I try to walk 2-4 miles every day, but by the end of it, there is a lot of discomfort. BUT..I’m still plugging along. I started the metho a month ago and that does seem to help, and hopefully the pred. will decrease soon. I’m off the naproxen, use it only “as needed”. But I was surely taken back by the flare up in my feet. Interestingly, I have also had episcleridis in both eyes off and on for the last 20 years and my rheumy said this could also be linked to RA. I have never had the RA positive factor in my blood. Who knows why…thanks for the venue!
I think the why is that you have RA. I’m not trying to be difficult – it’s RA that’s doing that. It is unpredictable and unrelenting, coming back & striking in new places… Are you taking any disease treatments yet along w/ the pred and naproxen?
Thanks Kelly for your response – I’m taking metho and am up to 12 1/2 mg, with an increase to 15 mg coming this week, which is the dosge my rheumy wants me to be at for now. I’ve stopped the naproxen unless needed and am on 1 mg folic acid and 12 1/2 mg pred. hoping to decrease to 10mg this week.
Good luck to you. I hope you can run w/out foot pain again soon.
🙄 My first symtoms of RA was when I was 25 years old. My fingers and wrist hurt very badly, almost all of the time. Especially my wrist. I went to my family doctor and was diagnosed with carpel tunnel. A few years later we moved to another city (all the while my wrist hurt on and off for years) and I finally got a new family doctor, who was later under investigated for unethical issues. I would go to this doctor and beg him to tell me what was wrong with me. My wrist was killing me, nodules was coming up on my fingers and sometimes I could not even straigten them out. Not to mention I would beg him to tell me why I was so tired all the time. He would say, “it is just your carpel tunnel, when you cant take the pain anymore, we will operate.” The only test he ever gave me (over a 10 year span) was a B-12 check. (I could to find another doctor that took my insurance) so I continued to suffer with pride. Well, thank God, another doctor took over his office after he got in trouble. And the FIRST thing this new doctor did was test my RA Factor and whatever else they test for. She said I had all the symtoms. My RA factor came back 1000.3 (normal being 0-13.9), she immediately called a rhematoligist and made me an appointment, which was still 8 months away. I still do not understand this. But anyway, I finally got to see my new Rhematoligist and he diagnosed me with RA and Fibromyalga and put me on Methotrexate, Plaqunil, Enbrel, Lyrica, folic acid, ambian, and pain pills. That was almost two years ago. At first it changed my life. I felt as close to normal as I had felt in years with my wrist. The horrible fatigue never went away and only seems to get worse. I had an appointment last week and my RA factor is up to 1208.3. My doctor said, “that is the highest number that I have ever seen in my lifetime”, he calls me his “special” patient. He decided the enbrel was not working and has now changed it to Humira. I pray to God that it works because it is getting very hard to get up out of the bed and fight to get through yet another day. My doctor said that I am the on the highest dosages of methotrexate and plaqunil that I can be on. He is a very good hearted doctor but he doesnt like questions and he has a split personality, sometimes he is in a wonderful mood and sometimes he is so very hateful. I am so sorry for everyone that has to live with the chronic pain, frustration and fatigue of this horrible disease. And I am especially sorry for those who has fought it since their teens. I dont think I could have handled that. On my good days, I do too much and pay the price for a few days after. On my bad days, which seem to be more often than not, I pray for a good day and for the day to end. And I wont even go into the lack of support from family and friends……if anyone needs a friend or just someone to talk to, my email is majesticdogs@yahoo.com. Feel free to contact me.
Hi Trina,
You say “suffer with pride.” Unfortunately that odd phrase makes sense to me – are we proud that we can take the pain & not complain?
I’m so glad you have a good doctor now. I hope the Humira does wonderful for you. 🙂 Unfortunately, I also understand the lack of support – it is a sad thing about RA being so misunderstood so that the support is not available to many who need it most. Hopefully, if we stick together, we can change that!
My first acute symptom was exhaustion.
I was sent to many different doctors and told many different reasons – viral infection,possibly MS or MD, Most definitely ME……..More strangely , an aversion to flying ! (this one is particularly weird as after years of problem free flying, sailing and travelling in general I now have terrible ear pain on take off and more so landing in a plane and start to feel ‘unwell’ while travelling !!!)
When my medical history was looked into more deeply AKA – when someone actually asked me about hereditary illnesses in the family – eyes lit up at the mention of my grandfather’s RA….EUREKA !!!
It does seem plausible that my recent flight to South Africa had something to do with triggering the dormant gene – I was exhausted and felt yucky for about 3 days after I got there, the same after my return journey. But also I had been treated from about 20 yrs old for a recurring back problem and had ‘weak’ ankles and shoulders. ( Could never do a handstand as a child !) But these had always been blamed on my ‘active lifestyle'(RIP). Namely horses and motorbikes. So maybe it had started slowly, years before.
Blood tests were done and by the time I got the phone call asking me to make another appointment I was already noticing pain in my hands, knees, ankles,hips and shoulders – as I didn’t have flu at the time I had already guessed that it was in fact RA. I recognised the symptoms.
My whole family had taken care of my grandfather for years – (I never knew him pre RA) and helping him with feeding, bathing and the toilet were just the norm for me. There was very little treatment in the 60s and 70s. He used to have hot wax poured on his hands to give him temporary mobility in his fingers.Sounds more like torture than treatment !
Methotrexate was prescribed for me but unfortunately made my teeth loose and my gums bleed so I now take Sulphazine and arthrotec for pain relief.
I suppose I’m one of the lucky ones because I have only constant stiffness and joint pain – I have never had the ‘red and swollen’ flareups to any extent like my grandfather had. I know it will come eventually, but for now I have enough to cope with !
The frustration of not being able to do the simplest of things is one of the worst – guaranteed to have me in tears at least once a week !
Sorry for being so long winded – but this is the 1st time I’ve had the opportunity to talk to people who understand.
As I live in Holland this newsletter is my only contact with others in the same boat !
Thanks RA Warrior !!!
Janet, Thank you for sharing. It’s exciting to hear from you over in Holland! I once visited your country very briefly. How beautiful!
I understand the hot wax – I get in my truck and place my hands on the burning hot dashboard pressing the heat into my hands so that I could have a moment of relief. Some people like ice better – do you?
Janet, Thanks so much for sharing. And thank you Kelly for starting this wonderful “little part of the web” The hottest water I can handle in my jacuzzi gives me the best temp. relief that I can find. I have never connected it, but when I was a preteen and teen, i had to wear high tops because of my weak ankles, when I would run and sometimes even when I was walking, they would just give out. And I was an advid horse back rider, back then, also. And for about a year before I got help, my husband would open me a bunch of bottled waters (and any jar that I may be cooking with that day) before he went to work. What a wonderful place this is. Hope you dont get tired of me here, its the only place that I dont feel like hypo weakling……lol
Weak ankles? I had those as a teenager — like you, they’d just “give out” when I’d be walking along, or sometimes just standing around. I had surgery on my right ankle when I was 28 I think, to repair the ligaments that had finally torn.
The year I was 15 I was tired all the time, slept most of the time when I was at home, slept in class, couldn’t get enough sleep. No one ever did anything about it, my mother was phobic about doctors. I finally adjusted to it, but I’ve been unusually tired all my life since then.
Now I’m wondering… did I have RA or the beginnings of it when I was a kid?
For me, the first symptom/sign has also been the most troublesome persistently – fatigue. It started around 2003, and by the time I was diagnosed in 2007, it was to the point where I had to take a 2-3 hour nap at least every other day, more often on days with lots of activity.
Another early symptom was that my feet were sore first thing in the morning, like I had walked a long distance in bad shoes the day before, but I hadn’t. This lasted for a few weeks and then went away.
Hi Tabatha. I know that foot symptom! I’ve had that since I was 16. Have you found that treating your RA helped the fatigue?
I wasn’t diagnoised for a long time although my blood work showed a positive my doctor kwpt saying my hands didn’t present RA. Suffered a very long time before finally was diagnoised and on meds. Due to Insurance changes had many doctors say the same thing. By the time I was diagnoised my body was a mess.
Judy,
:/ I’m sorry your doctors were wrapped up in what your hands look like. I hear this all the time. I hope your treatment after that helped you?
My first symptom was the fatigue, and my whole body hurts but it wasn’t a really bad pain just an annoyance, that’s why my family always thought that I was hypochondriac. Then 3 years later I got my diagnosis when the pain in my right knee was keeping me from walking. I was so relief cause finally they believe me :cute:
It’s no fun to not be believed. :C
Kelly, you seem to know so much. It is amazing. I feel so alone in what I’m going through. I do not know anyone “young” with RA. I am not that young, but I am 35. My symptoms started in my knees last fall. I later would have times of flu-like symptoms and varying joints would hurt and turn red. I would feel tired, sick, achy, and stiff in my knees. I ran low grade fever, and no doctor could figure it out. My lab work never showed anything except Vitamin D deficiency. No RA factor, no c reactive protein, normal esr, etc…?? My x-rays never showed anything. My hands, elbows, and knees would show visible redness and swelling. I was diagnosed in Spring of 2010 based on my symptoms, physical exam, and family history (grandmother has RA). I started methotrexate and have taken it and Celebrex since May; however, nothing has changed. I sometimes wonder if I have RA or maybe something else is wrong and that’s why I’m no better. Why didn’t any of my tests show anything? My doctor recently decided to add Embrel, but I have to be treated for latent TB for 9 months before I can begin Embrel. I feel like I am facing 9-12 more months of the same crap, and the nausia (sp?) from the methotrexate is so yucky. I feel upset because if I stand for even thirty minutes or much less I begin to get stiff and feel flu like and I have three young daughters and a full-time job. I have no one to ask questions to and no one really seems to know much about all this. I only know a few people with this, and they are old and not doing well. I just feel so sad and lost. God is the only thing that gives me hope. I just hope I’m doing the right treatment. Do you have any comments, insights, or suggestions?
Dear Anna,
I’m glad you found the site. I don’t know as much as I wish I did. 😉 But I’ll try to address your questions:
The first I’d do is read the Map for the newly diagnosed with RA. Here’s the link – click here. You’ll find some pages here that will help you to know more about tests & diagnosis. The TAGS dropdown is a good way to find the right page, too.
The doctors are very cautious about diagnosing RA. Usually, it is hard to get a diagnosis so I doubt they gave it to you without being fairly certain. Blood tests are often negative as you probably have read. (See here. ) Do you know if you had an anti-CCP test – that ‘s the most specific test for RA. However, it’s good to research during these months while you have to do the TB treatment anyway, right?
The mtx is annoying, but it’s a well tolerated drug generally – meaning not damaging. There are some ways to reduce side effects – look here on the mtx pages. If the mtx is not helping, it may be increased. If it is taken by injection, there’s usually less nausea.
For me, Celebrex did not help my RA. Maybe some mild RA would be helped by it? I don’t know. But there are anti-inflammatories that can help you while you are trying to get the RA under control. That is just treating symptoms – but can be very important. NSAIDs or prednisone are what most doctors use for this. There are some prednisone articles here too if you want to read them.
I hope this helps you!
Since my one little post yesterday, I have read more of this site. I have to disagree with you on what you know…I am so impressed with the way you have searched every tiny corner of this disease!!!! I hate to write this on this same “thread”, but I wanted you to remember who I was from my previous post.
I feel like you are busy, but I have to follow-up….
1) So on the topic of methotrexate nausea, do you still have the nausea with the injections? After the two days I just had, I am seriously considering asking for injections vs. pills, but I have to know if the nausea goes away. I am also interested in the part about getting more of the medicine with injections.
2) What is the size of the small needle tips that you use to replace after drawing your medicine?
3) I noticed your embrel/metho “experiment”, so that is the same thing I may end up on. Did you like embrel? Do biologics have these same side effects as metho?
4) The TB tx for 9 months is my next move…so from your experiment I take it you recommend continuing metho. alone during my TB tx. I hate delaying the biologic that long, do you think that will effect whether or not I go into remission?
Sorry for so much, but I appreciate it in advance. I understand that I should consult my doctor on all this, but I’m just curious because of all your experience and knowledge. God bless you for all your hard work!
Anna, I can only give my opinions. Here goes.
1) Did you read the comments on the methotrexate injection posts? Have a look at the comments there to for lots of opinions on it. Most say that nausea is much less w/ the
injections. I agree w/ that.
2) My pharmacist fixed me up with a 27 guage I think. They know more about this than the docs & rheums I’ve talked to so talk to a pharmacist in addition to your rheum.
3) Enbrel didn’t help my RA symptoms with this exception: it reduced my fever & fatigue. The joint sx continued to worsen. But I know a lot of people say Enbrel is great for them. The disease is heterogenous – they can’t yet predict which med will work for which patient.
4) I assumed that since your doc is letting you take mtx now (with the latent TB), that he’d have you on it during the TB tx also. But he’d have to let you know for sure. If he doesn’t, then he may be planning on your using prednisone to control symptoms during that time. Read up on pred if he does, but it too could be like a “lifesaver” if you can’t have any mtx / or dmards for a period. Yes, delaying treatments MAY affect how easily one goes into remission. But there’s not concrete stats on that.
There is one more thing, certain antibiotics have an anti-inflammatory side effect. So you might even benefit from that during your TB tx.
Good luck to you Anna. It will be good for you that you worked to learn & take control of your RA as much as possible. :heart:
——–
Of course, yes, everyone should talk with his dr on all these things. These are all just general statements which are found elsewhere on this blog. The disclaimer is at the footer of this site. 😀
hips, knees, wrists. Now I have it everywhere except neck/spine, and oddly, have gout as well.
Hi Laura, I looked at your blog. I’m glad you can do knitting & quilting & spinning with RA everywhere. Did you get treated early? You are very lucky! Hopefully, it will stay that way. :heart:
Like many others here, I had severe TMJ from the age of 20, finally resulting in surgery. My doctor indicated I had a very unusual case because the disc moved back and to the side, where most move forward. I still suffer with TMJ and see a neck and face pain specialist regularly, and must wear a guard nightly, along wtih a small dose of flexaril. My next symptom began as a jel like “ball” on the tip of my elbow, that grew until it was the size of a small plum. It was painful at first, then no pain but very unsightly until it suddenly went away one afternoon. I later learned that it was likely a bursa that eventually burst. None of these were ever related to RA, even though my mother was confined to a wheelchair with the disease at the age of 15 – being one of the first human trials for cortisone – recovered, and walked out of the hospital 18 months later. I am very active and energetic normally, but began to tire easily around the time I turned 35. Both my GP and OB/GYN told me to get used to it, that it was part of getting older. Not too long after the exhaustion set in, I would have periods that the bottom of my feet felt like they were full of stone bruises – and it was excruciating to stand or walk. This was during the summer months, and I often went barefooted so the pain was attributed to that. Time went by and one day I woke up with ALL of my fingers excluding my thumbs(my ring finger is normally a size 4.5,swelled to the point that my skin hurt – at the same time that my feet were at one of the worst pain levels I had ever experienced. My doctor then told me that it had to be an allergic reaction to something I ate or drank. I couldn’t see a rheumatologist without a referral, and my GP didn’t feel the symptoms were related to rheumalogical disease anyhow. I eventually had every kind of blood test you can think of to try to determine what was causing my weird episodes, with everything coming back normal except for showing I was anemic with low count on my white blood cells. I was tested almost every 6 months and my CRP and RA factors were never elevated, and still are normal to this day. I have been through a battery of alternative drugs, preferring to avoid methotrexate due to the potential side effects – starting with Plaquenil which worked wonders for me for over 3-1/2 years. Then to Arava, and now Enbrel. Over the past year, my right shoulder has been problematic, but attributed it to being torn in 3 places from something I did at work. The pain wakes me up in the middle of the night and keeps me from my beloved water skiing! Surgery and PT have been recommended, but I have been hesitant to succumb to that or injections – and reading the comments here, I’m glad I haven’t put myself through that for nothing. I am so glad to have found your site!
I was diagnosed yesterday with c8 disc arthritis. I have been in debilitating pain since Monday. I had an MRI yesterday morning, which is how they found it. I have an appointment with a pain management doctor Monday afternoon, so I am hoping to hear something – anything – encouraging after this traumatic week. I want to go back to work to my job that I love and help my daughter plan her wedding. I just want to feel better! Today is actually a good day, thank God. My friend, Nancy, told me about this website and I’m glad to have it as a resource.
Thank you,
Marsha
Good luck Marsha. I hope the pain doctor can help.
My first symptom of RA was pain in the bone of my right shin. It got so bad I could barely walk or even drive my car. I had always had jobs where I walked or was moving all the time. This pain put me behind a desk. The fatigue was the next symptom. Literally falling asleep at my desk. Missing work. The leg pain sent me to 4 different doctors over the course of 3 years. One doc wanted to put a rod in the leg as he thought it was a fracture. My GP had tested me for RA but it kept coming back with a NEGATIVE RA factor. He finally sent me to my Rheumy, and she found it. The disease had aggressively spread to the usual joints over those years, and I am now on disability, unable to work. My hands weren’t affected until about a year after the diagnosis. Now, about 6 years after the shin pain began, all of my joints are affected. So no, it does NOT begin in the hands all the time, or even with “equal pain on both sides of the body”. I can really relate to the feeling of walking on rocks and not being able to wear shoes! I wear these slip on hard soled shoes that look like slippers lol…of course people look at my shoes and I can see their wheels turning “why is she wearing slippers in the middle of the day?”. Too funny. God bless you Kelly for this page and these forums. I don’t feel quite so alone.
It’s good to hear from you Erinne. 🙂 Is there a specific diagnosis of your shin pain? Was it tendon or bone? Knee related?
Hi Kelly and thank you :). I never did get a diagnosis for my shin, they wrote it off finally to the RA even though there is no joint there. No it wasn’t knee, it was definitely bone pain in the front of the shin. I was sent to 2 different ortho’s because of it, as well as physical therapy which caused MORE pain!!! I do NOT believe in physical therapy! It starts about 2 inches above the ankle and extends up a little over an inch below the knee on my right leg. My GP mentioned a bone biopsy but he never did it (I don’t think he really wanted to because of the pain). It still hurts along with the joints.
After reading some of the other comments, I realize I had the “frozen” shoulder joint on several occasions after waking up! That was before my diagnosis as well. I thought I had slept on it wrong as well, but couldn’t move the left arm, raise the shoulder or or use that hand for a couple of hours after it happened. It spread to my collar bone on those occasions as well. Things that make you go hmm lol. I never connected that until I read your blog :). Thank you for that.
Erinne, it is true we often piece these things together later on. We are strong & just press on & ignore a lot of pain because we get “used to” it. I did the same thing with 3-day flares for many years and I hear it all the time from other patients. Also, so many various complaints can sound “nutty” and since we are aware of that, we sometimes don’t mention each thing to the docs.
I totally “get” the not mentioning everything to the doc’s Kelly. I have so many “small” things that it seems to cover every part of my body! I have been reading about the “gas, bloating” stuff too!! I had NO idea that was related to the RA!! I thought I had suddenly developed stomach problems! What causes that?? And my ribs right under the breasts hurt so much to touch!! I haven’t told the doc about that or the gas/bloating/burping. People (incl my doc) ask “where does it hurt?” and I simply start to laugh because of course when you say everywhere they look at you funny! After re-reading this I think back to a knee that was swollen and red and sooo painful about 10 years ago, a doc tried to draw fluid out and couldn’t get any. Hips that hurt so bad to touch over the years and my doc saying “bursitis”. So many symptoms I STILL haven’t put together with the RA. My Rhuemy figures I’ve had it since about 2005 which is when the shin pain began so suddenly, but I am beginning to think it’s been going on much longer. I used to be so active, used to get up at 4:30 a.m. when my daughter was little and enjoy a quiet hour before I got her up. I stopped being able to do that many years ago.
She is almost 19 now, and has been diagnosed with ankylosing spondy. I pray she won’t/hasn’t developed RA. I’m afraid she already has it sometimes. She has grueling fatigue, which was written off to mono which she had on several different occasions since she was a freshman, along with strep throat. First she was diag. with reactive arth, and now AS also. I don’t know for sure what she has. She will see the Rheumy again in December while on Christmas break. She has had knee pain “growing pains” since she was 2, and has had orthotics, seen the specialists in Spokane WA, and we were told all through the years that she had growing pains (she DID grow quickly). Hell, just writing this has made it painfully clear that she probably does have RA. She was positive for the HLA-B27 gene though I don’t have it.
Erinne, I hope you are still following this site. I was diagnosed with seronegative RA a week ago based on long history of fatigue and recent joint pain and swelling in both hands and feet. I, too, had shin pain for about a year which went undiagnosed but suddenly went away with a prednisone trial related to my RA symptoms. Your story validates my belief that my shin pain was related to RD.
2-3 years ago I began having pain in my toes – no swelling or redness, only pain. X-rays showed arthritis and I assumed it was OA since the doctor wasn’t specific. Two years ago, my fingers began to swell – no pain or redness only swelling and stiffness. Every morning they would be swollen like sausages and I thought I was retaining water since I have high BP. Because my eyes would sometimes be puffy as well, my PCP chalked it up to allergies. I was just dx’d w/RA a few months ago after many joint problems began to manifest. Now I have joint pain in my toes, feet, fingers, wrists, hips, shoulders and just within the last few days – knees.
Thanks for posting, Dee. That’s very interesting to me that you had swelling w/out pain. Mostly patients tell me about pain w/out swelling. I’ve had swelling w/out pain too at times. I wonder if it’s common? Do your other joints swell now when they hurt? Sorry about our knees.
Dee, I rarely have the redness and warmth when my joints are swollen either. I read about it all the time, but a lot of my symptoms are a little different from the “norm”.
My first symptom was my fingers. They would stay in the position of changing the radio station. I wouldn’t be able to straighten them up. First my right hand and then later my left would get stuck at the fore knuckles. After that it was my shins. I know “shins”. Yes, and that still has not been explained. From the shin to my ankles and then my shoulders, hips, and elbows. What’s next?
Wow, did you see Raini’s reply to you?
Hey Connie…I still don’t have an explanation on my shin either!! you are the first I’ve found that had the shin pain too! I don’t mean to sound excited, but it’s just something to find someone else who’s started in the shin’s. Mine was just the right shin but it sure didn’t fit everything I’ve read about RA pain. Best of luck to you, woman. 🙂
I was trying to remember who else had mentioned that symptom. Was it you then? Could it be a tendon? One person I know had RA attack achilles tendon first – is that on this thread maybe? So it could be another tendon along the shin.
Yes I was one that had that symptom too Kelly. And it could be a tendon. I am having trouble with the achilles tendons being swollen now too, so that makes sense. Idk, I just know that was the first really horrible pain, and I never did get a dx on it, just written off to RA…
Thank you for this website.
My fingers swelled first I thought I injured them. I went to an immediate care clinic when I couldn’t bend them anymore. The dr. ran blood and gave me codeine and prednisone dose pack. It helped. Nothing for about a year. Then it happened again, this time all fingers on my right and left hand. Now it has moved to my feet, and knees. My feet swell and it’s very painful to move. I’m always tired, I lost a lot of weight and I wasn’t trying. I went from a 14 down to a 6, in about a year.
I had blood work done and my ANA is elevated. I am scheduled for hand and feet x-rays this weekend. I am again on prednisone and codeine. I have to say prednisone is evil, but it does do the job. I have a lot of pain in the morning.
Family members think if I change my diet, or exercise it will just ‘fix itself’. I am over reacting and don’t need pain medication. Tylenol or advil works for the pain for them. They just don’t understand the difference, it is not the same as the older generation arthritis
Hi Heather, thanks for telling your story. What do your docs say about the weight loss? Were you eating? That is worryisome. There is a post here about rheumatoid weight loss caused by the disease, although I have no way to say whether that is what’s happening with you – here is the link – click here. Are you on a disease treatment yet? I wonder if that will help with that. Good luck to you!
The Dr. didn’t seem to be concerned. I saw your FB post. Thank you so much for your website. It means a lot to me!
They are waiting to see what to put me on. I was on methotrexate but I have a 6 year old son and I can’t be sick all the time. For right now they are deciding what to do with me.
Is the constant pain part of RA and the tiredness?
Not concerned? Well I am. It’s your business, but if it were me, I’d get a 2nd opinion. Yes, constant pain, fatigue, and the weight loss are all symptoms of RA that is out of control. When you told him the mtx made you sick, did he offer ways around that? Maybe look over the Mtx page links -there are lots of things you can do to reduce side effects. I hope this helps some.
oh and I had no appetite I forced myself to eat. I was eating as normal.
:heart: my rhiematoid beag in my hands then feet ..i now take enbrel shots 4 times a month ..i pray daily for a cure for this disease ..the pain is something else ..only if you got it cant you understand ..otherwise .be thankful for your unhurting hands and feet ..thank you and be blessed
vickie ask forgiveness for the mispelled words ..please iof someone can correct them for me ..i titally blame the rhuematoid due to the pain and swelling of my hands ..thank you so kindly
have a blessed day …
Hello,
I am a first time visitor here and have been reading for some time now. My very own first symptom of RA was my left knee…it swelled up, turned hot and red, and was extremely painful. The year was 1996. RA was diagnosed five years later…but we already knew the beast that had come to reside in me, just didn’t know his name.
Good to meet you, Ruthe. Well put.
mine started in my neck ( like I slept on it wrong) then big toe, then knees , wrists. I lost 40 lbs in 6 months and killer fatigue set in. was in a wheel chair before a year of it. Then I was sent to an RA doc and the drugs did wonders metho, enbrel, mobic . I had my neck fused and a hip replacement in the 5 years I have had this disease. I’m in a flare up now with fatigue and muscle spasms but pt is helping plus muscle relaxers. I tell my doc when I feel great so when I don’t feel so hot he starts a plan of action.
That’s a good idea if one’s RA goes up & down, Laurie.
Up until about 8 months ago I had never been on any kind of medication. However during my yearly exam my doctor told me my blood pressure was a little high. I began walking for exercise in the hopes that I would not have to go on blood pressure medication. I worked my way up to walking four miles a day. My left foot began to feel bruised then swelled up, turned red, and was hot to the touch. I went to an orthopaedic doctor who at first thought it was a fracture, then tendinitis, then he called it “Metatarsalalgia”. He had me buy a Reese’s shoe, then a pair of expensive sneakers with a special metatarsal pad. I have a job where I am on my feet all day long and I was limping badly, especially when I started having pain in my right hip and right knee as well. He thought the pain in my hip and knee was because I was limping. This went on for months, but my foot didn’t heal and the pain in my knee and hip got worse. I told both doctors that I thought there was something seriously wrong with me and asked them to test me for Lyme disease. The tests came back negative. The pain then moved to include my left shoulder blade, and then both shoulders. Finally, one day at work, near the end of the day my right shoulder completely locked up. It would not move at all. I feel that it was only then that the doctors truly started to listen and take me seriously. They both referred me to a rheumatologist and last week I was finally diagnosed with RA. I am feeling very overwhelmed, discouraged, depressed and scared. I am afraid I will lose my job because of all the sick time I have used. I am afraid for the future. I had so many plans, dreams, and goals. Now everything seems so uncertain. I was glad to find your website. At least I am not alone.
Dear Becky,
Thank you for sharing your story here – it may help another patient who is searching. I wish I could help with those feelings that you have & many of us have. It’s true you are not alone. I know that helps me to know that too. I wonder if the American’s with Disabiltiies Act protects your job – likely. Hopefully, you will respond to medicine & still be able to do it!
In retrospect I had minor indicators for a very long time but my feet looked like Flintstone feet overnight. I could barely walk on them and shoes were out of the question. When I showed them to my sister she said “Holy sh&%! What is wrong with your feet?” Later that very same day one of the dogs, a small dog mind you, stepped on them and I hit the floor in tears, I didn’t think the pain would ever stop and everyone around me was staring at me like I was nuts. It was a good 2 months after that before I woke up one morning and I could hardly move anything, it was the worse flu I ever had only it wasn’t. Hello RA goodbye previous life without modifications.
Too well said, Dee. Made me remember well. :heart:
My pain first started in my left ankle(within a week of being extremely sick from a Hep B vaccine). It acted like I had sprained it. Then the pain went to my left knee. Now it affects every joint in my body. If it were not for TNF blockers, I would be completely debilitated.
Nikki, I’m glad the treatment helped you – I think that’s true for many people. I feel the same way about the methotrexate. RA is still every where like you say, but I’m not bed-ridden thanks to medicine. :doctor:
My very first symptom, oddly enough, was jaw clicking/popping. I thought it was TMJ and after 2 different dentists told me it wasn’t, i figured it was more of an annoyance than anything. Then my hips and knees started hurting on & off and now my hands.
Sorry it’s getting to your hands, Michele. I remember hoping mine would never hurt like this, but it does eventually get there in most patients.
I’d like to say that the noises you mention can occur as new joints are affected. It happened to me that way with each new joint & I’ve heard it from other patients too.
i too have as you call them r a feet and i agree totally its just as though small rocks are underneath my toes some mornings when i try to walk ..and try is all i do ..its such a debilitating disease and i hope and pray one day a cure will be found ..it plays on my mind so much now when i hear people say oh you have r a yeah i have arthritus too …r a is so different and so much worse than most people realize ..i hope they will make strong commercials about how painful this disease is and ll the oain it causes not only the one who has it but those around them ..im 50 and if this is the prine of my life i dont want it anymore ..i tried to be posistive for the last two years but its taking a toll when i cant be in control of my life ..my daughters say mom lets go do this over the week-end and i cant say yes anymore because i dont know from one day to the next how ill feel and if ill be able to even walk ..i pray for all of you who have it ..truly its a disease that so needs a cure ..love and appreciaition to you all for your support for i truly know you understand the pain ..
Same to you, Vickie. :heart:
My first symptoms of RA, started in my hands when I was 16. At first it was just minor pain and swelling as well as the development of Raynaud’s syndrome. I also had hip and back pain that was worse in the morning and b4 bed.
Thanks, Sarah.
I was first diagnosed at age 38 – 18 years ago. Fortunately this has progressed fairly slowly for me – initally had incredible swelling of my hands and feet with stiffness and pain. My DR. immediately conveyed what he thought was going on – he himself has ‘lupus. My RF was initially negative, although my sed. rate was extremely elevated and my WBC count was also high. Two years later he rechecked my RF and it was at that time positive. So, who knows how long that might take to have the disease confirmed with blood work?? I am a Registered Nurse, of course in constant denial of my disease, but lately things have progressed to a point where I am finally having to go on some DMARD meds. We are starting with Methotrexate, as I have just been diagnosed with a ‘thinning retina’ in my right eye. Related to the RA??? Who knows, but probably. So Plaquernil is out of the question as it can play havoc with your eyes. I’ve been on long term ASA and Ibuprofen (initially) and now take Naproxen 500 mg. bid. Occasionally need Percocet and T3 for chronic break through pain. I’ve had 5 surgeries – Osteotomy of my left great toe, with the right one heading in the same direction … fusion of two fingers – right hand, with a third progressing to needing surgical correction probably in the next 3-4 months, and an Osteotmy Arthroplasty of my CMC joint (thumb) of my left hand (2nd surgery on this thumb).
So, outlooks aren’t great, but I continue to ‘fight’ as I am very active, especially outdoors – I live in a British Columbia, Canada ski town and love doing all the things that this warrants. I still work full time as an Operating Room Registered Nurse (36 years+) and I struggle everyday with this disease. Lately the fatigue is really getting to me. Maybe the Methotrexate will help … as I’m getting to the end of my rope with all this stuff. Just thought I would make comment to let everyone out there know you’re not alone. Continue your fight, try and keep physically fit, and keep a positive attitude (my denial mode helps, sometimes!). Deb
Me again. After reading other comments, I can make comment on the migratory pain experienced by some. I too,have pain in one ‘elbow’ for a week and then it somehow shifts to the other ‘elbow’ for the next week. The same can happen with my wrists, ankles and shoulders. ‘Something’ is always hurting. There are days when I don’t know how I’ll make it to the end of my shift. Dee’s comments (Nov. 4, 2010)on her ‘Flinstone feet’ – that is exactly how I described my very first encounter with this disease! My first flare had my feet and hands so swollen I couldn’t close my hands, and didn’t want to put any weight on my feet. My most recent development has been my c-spine issues with tingling and numbness in my left arm and hand – just great … just what I want is a cervical fusion! Anyway, I try and keep positive. My kids are supportive and I know if I end up unable to live alone, they will be there for me. We are not alone ….
Thank you so much Deborah. That information is helps others looking for someone with a similar experience. I’m glad your kids are supportive – they must understand what you go through. I feel the same way about mine. I hope the methotrexate works wonders for you. It does help almost everyone.
My RA started in my feet, it has now spread through my body. I also have a one year old and a two year old to take care of, some days I dont know how Im going to do it anymore. The fatigue is really bad, some days worse than the pain. I have a problem with the people arround me everyday not understanding and I have to fight with my husband on a daily basis, some days I feel that it makes my symptoms worse. The hardest thing for me is I used to be so active and in shape and now Im over weight and very unhealthy, this leads to depression for me because I just dont know what to do. I really need some support and little understanding in my life.
Hi Teresa, I hear you. It’s so hard. Wanting to do things.. and missing what you could do before.
Sometimes it helps if you can get them to read something on here that shows what you are dealing with is real and you aren’t the only one. If they’ll just read it. Hopefully eventually you will have more understanding from those you know. What has also helped me so much is to have friends who understand because have been there since they have RA or JRA too.