Bringing information & encouragement to fight RA
My mother started taking me to doctors when I was 4. This was 1963. The family care doctor told her I had arthritis (on physical examination alone) and there was nothing that could be done for me. She continued dragging me from doctor to doctor trying to find answers and help. Finally in 1970 at age 11, I was officially diagnosed with JRA. My treatment was a handful of Bufferin every day. I went years without treatment and the extensive damage is quite evident today. If you think you have RA, don’t waste too much time looking for answers on the internet. Get yourself to a Rheumatologist and, if you don’t get answers from him/her, get yourself to another one. THEN start educating yourself.
I have a possible diagnosis ….I am scared because I had a stroke and they are thinking that it is related to a blood clotting disorder plus rheumatoid…all new to me!
Hi Gina, I hope that it’s not RA. But oh my – a stroke plus the rest. Poor you.
I’m newly diagnosed and have so many questions! This website has so much info, I’m sure there is discussion regarding my question that I haven’t found yet.
Are there things you’ve noticed that trigger flares or aggravates RA, i.e., stress, certain activity (travel, exercise, etc), weather (think I’ve experienced that), etc.? I have learned how diet & sleep contributes to RA symptoms–thank you very, RAWarrior! You’re God-sent!
Thanks so much for your previous replies to my questions on FB. Hopefully, with a little time & knowledge, I won’t be bothering everybody with these questions!
Hi Pam, there is a post on flares. Click here. Some say that they have flares aggravated by things like stress and some do not. Activity does often cause a joint to be worse if it is already affected by RA – I guess that would be a flare.
The weather can make a flare feel worse in this way: changes in barometric pressure are believed to affect the way that inflammation feels inside of a joint. Like I said, some notice this effect & some don’t. However, I can’t see how the weather would initially create disease activity. RA is quite mysterious to try to figure out because for most patients it does flare & remit unexpectedly. People sometimes try to figure out what caused the last flare to start or stop, but there is very little proof. If you feel certain something makes your RA worse, you could avoid it – of course you could not avoid low pressure weather. Haha.
I’m sure no one thinks you are bothering them by asking questions. That’s what we are all doing!
Hi, I went to the Rheumatolgist last May. She is very kind and understanding. I tested as sero-negative but had swelling and redness in my hands and feet. She started me right away on meds. Plaqunil and it bothered my stomach. Then we tried methotrexate. I actually started feeling better but the liver count went up. So then she tried me on an antibiotic and started getting rashes and yeast infection. So we tried Sulfasalazine. I got rashes and sores in my mouth. I am on nothing now. I go back in May and she said we could try Leflunomide. Some of my swelling in my hands has gone down, but my middle finger ache. I have never really had pain just a constant ache and feeling of malaise. I swim laps 3-4 days a week. Some days are easy and other days not so easy. I feel fortunate not feel like I can’t do anything. I do have facet arthritis in my lower back. I have learned to work around that too. Thanks so much for your blog. I just accidentally ran into your website searching about rheumatoid. Stephanie Alton, Illinois
I’ve been seeing a rheumatologist since March 2010. In January I had a problem with my left foot. I was at work and over the course of an hour or more my foot was in more and more pain, I couldn’t put any weight on it. I went to my pcp and she had blood taken that showed high RF in my blood and referred me to my rheumatologist. He took lots more blood and foot and chest xrays. My blood has high RF I also test positive for Anti CCp (I think that’s what it’s called). My blood and urine tests show now inflammation and no kidney involvment. My blood also shows high for Lupus. The Rheumy says I have no active disease. (It’s true I would have never gone to the doctor – I feel like myself, no real stiffness or swelling) He believes the foot issue I had which resolved within a few days was probably unrelated, but a good catch by the pcp because the Rheumy will monitor me with regular 3 month visits. Basically I’m writing because I feel crazy now. I worry all the time. My gradmother had RA -I never remember her walking, only in a wheelchair and eventually bedridden. My doctor tries to re-assure me that medicine and treatment plans have come a long way since then and he doesn’t think that will happen to me. Have you ever heard of this before – someone with high RF and Anti-ccp and also Lupus results – but so far no active disease.
When you say possible Lupus results, do you mean ANA or something else? RA can cause high ANA results too.
Ok, I’m not a doctor, but here’s what I think. Anti-ccp is 98% specific for RA – it’s not foolproof, but combined with a positive Rf, I’d be very concerned it’s RA. RA can start out in flares & stops & you can feel fine in between. Some doctors call that Palindromic Rheumatism – click here. RA is a complicated disease that’s not well understood. Some patients have high test results with less symptoms and many others have the reverse.
You are not crazy. My guess is that this will become more clear what you have as time passes. Please read up on early treatment. What your doctor said is true that the newer medicines are better, but they work best if used early as possible. My own RA has not responded to treatment yet in 4 1/2 years after so many years with undiagnosed RA because it was “palindromic.” That’s just my personal experience. But if you still are worried, there is always getting a 2nd opinion from another doctor.
Does steroid work fast or slow?
Friend of mine was diagnosed to suffer from RA or Lupus and doctor treated her with steroid 4mg. Until today, she already took it for a month or so. However, she doesn’t show any improvement.
In my knowledge, steroid works fast to treat inflammatory. Here is my reference :
Could this be RA or Lupus? If so, why steroid doesn’t seem to work on her?
4 mg of pred is considered “very low dose” and it does help a lot of people, but it may not be enough for your friend. It would have some result within a few days so I agree with you. I would not judge the diagnosis by the reaction to that low dose. Good luck to her.
I haven’t been diagnosed with RA but I know I have something not good going on with my body. I was diagnosed with Fibromyalgia this last September after being in severe pain for over a year. Before I got sent to a Rheumy & received the official Fibro diagnosis, I had an episode where my hands were very stiff, swollen & extremely painful so my doc put me on a burst of Prednisone. It was like a miracle happened! I felt so much better in such a short amount of time…it was crazy! Fast forward to October and I start to have the stiff, swollen & painful hands again. It has also moved to my feet, back, shoulders, hips & knees. I could barely walk from the coach to the bathroom ….about 20 feet away….and I was unable to use my left hand. My Rheumy and family doc think it’s osteoarthritis and fibromyalgia because my bloodwork is all normal & my right hand xray didn’t show anything significant. My family doc put me on a short 12-day prednisone treatment again and voila!…I feel so much better! Actually, the best I’ve felt in almost 2 years!
Now, since the prednisone has worked a miracle on me, could that be a cue & help my docs zone in on a diagnosis? From what I know about Fibro, prednisone doesn’t not help because it’s a CNS disorder and with OA, it’s all about wear & tear on the joints so how could every joint in my body be worn & torn all at the exact same time? I just don’t get it! Does anybody have any insight on this cause it’s so frustrating. I want to know what is going on with me so that if it’s something that needs to be treated early to keep it under control, I want to get that on!
So, any info, insight, advice, etc., is so appreciated right now! Thanks so much!
I’m sorry this reply is late because of the holiday –
I agree with your assumptions about the prednisone. What you describe does not sound like fms or OA to me either. The best insight I have is that if you have a doc w/ a blind spot who is not really hearing what you are saying about the stiffness / weakness / pain then you might have to get another opinion. I know that is hard because I have been thru it too. A large % of RA patients have “normal” bloodwork – it’s not our fault – we just need better tests. Here’s something I wrote about that last year – click here.
I’m currently seeking a diagnosis. Over the last 4 months, I’ve experienced pain and morning stiffness (or any time I sit still for too long), first in both shoulders and both hands. It started suddenly one morning. I thought it was an injury because I did weight lifting. Several weeks rest, then weeks of PT later and still no better, my shoulders are popping and crunching a lot, and I can’t dress myself or tie my own shoes in the morning. I can’t sleep because I’m a side sleeper and my shoulders are too sore. Add to the mix, a stiff sore neck, both knees, both wrists, most of my toes… and now, my lower back, and both sides of my jaw. All in 4 months. No obvious swelling (just slightly in my fingers, in the morning). Previous problems were 3 flare ups of iritis, and one incident of both wrists feeling a lot of pain (which went away with prednisone). When the iritis happened, I was tested for a lot of things, only HLA B27 was positive. All other blood tests look normal. My doctor did refer me to a rheumy — the earliest appt I could get is in March… another 4 months! Since NSAIDS aren’t helping, she prescribed a different, stronger one. We’ll see how that goes. I’m still doing my workouts — but almost no weight now, and just walking incline intervals instead of running. It takes me over an hour to get out of bed and into my gym clothes to make it to the gym… with lots of help from my sweetheart. Any advice for how to get through the mornings while I await diagnosis and, hopefully someday, treatment?
Thanks! This site is wonderful!
Hi Terry. March is far off. :/ Sometimes it helps to call around and get on at least one waiting list to see one earlier. Earlier treatment has a greater possibility of bringing remission according to many doctors, so I hope you get an answer soon.
To answer your morning question, you might try taking your NSAIDs late at night, using a hot bath/shower to loosen up or reducing the workouts to see whether that helps. There is something with RA I call the Usage Principle - although I know you aren’t sure you have RA – Your diagnosis may even be a similar disease such as AS with that blood test you mention. You can search HLA B27 in the searchbox to find whatever is here.
Hi, I have posted before about hand pain….I ended up having surgery and my hand feels better. Before that I had 3 knee surgeries. Now….I hurt my ankle about a month or so ago and it still hurts where the doctor put me in a boot. I asked him if all these joint type issues is something like bigger problem (RA or another form of arthritis). I had been tested before my hand surgery for RA and all tests came back negative. This is so frustrating. What do you think?
Hi Sue, I think that is a lot of “coincidences.” but not enough evidence for RA.
Here are some things you can consider –
One idea is to read through the RA stories to see if you see any other common threads that you might have as symptoms that you didn’t connect to anything such as low grade fevers or dry eyes. There are so many symptoms that can be early RA.
As far as tests, the anti-CCP is positive in 90% of patients according to some studies, so make sure that test is done. There is also the nuclear bone scan that has helped diagnosed many patients with inflammatory arthritis since it can show inflammation when blood tests don’t. It is not foolproof tho – some studies I read said it was about 70%. Some doctors can do ultrasound but it can depend upon the skill of the user. It can detect RA damage if the user is skilled. Finally, some doctors use a trial of medication to test a diagnosis. Also not foolproof, but if steroids for example bring great improvement, then RA is more likely. Hope that helps.
I just ran across your site this morning and funny how first thing this morning I was going to start looking into finding a doctor here in Phoenix, AZ that could see what I have. I have been thinking I may have RA and now I want to set up an appt. with a doc. My next step is to find a good doc in my plan. I am so worried that I may not find a good doc right away. I do not have the money to keep going to diff doctors. Then I got excited when I saw your web site thinking you could help me find a doc. My Gen. doctor is around 70+ years and when I have explained diff. pains to him, he has just said basically that there is nothing you can do. A friend of mine has been encouraging me see a specialist and also suggested taking Osteo Bi-Flex which I don’t think helps. Thank you for creating your website, I am looking forward to reading over all the information in it.
Thank you Mary. We have many readers in your area. Maybe you could find a doctor by checking the Facebook group. They have a Discussion Thread there called where the Warriors Live. I bet you could find a couple of friends in Phoenix.
I have the weirdest symptoms ever. About 8 weeks ago my right hand middle finger joint started to hurt. The next morning my right hand fingers and left hand fingers were stiff and the middle joints were swollen on my right middle and pointer and my left pointer. They are visably crooked by pointing towards the pinky. I am glad the pain is visable as my doctor took me very seriously and ordered all of hte correct tests. However, everything blood wise is NORMAL. I was referred to a rheumy who sent me for an MRI of my right hand. The MRI definitely showed increased fluid signal and stated that the findings may represent inflammatory arthritis. She started me on presindone and methro. However, I cannot take the pres as it makes my heart pound so fast I cannot stand it. She states that I have some sort of inflammatory arthritis – either psoratic, reactive, or rheumatoid. She thinks rheumaroid is unlikely and psoratic is more likely even though I have never had a skin lesion (I don’t even get pimples). Anyhow, although I know they are generally treated the same, it drives me crazy not having an actual diagnosis! I do not have any other joint symptoms and think I am pretty healthy. So this is weird! Anyone have just finger joint issues?
Hi Tray, Yes, RA can start in any place and fingers are a likely spot. Of course we can’t diagnose each other, but I can tell you that RA is more common than the other inflammatory autoimmune arthritis diseases. Sometimes it does take some time for diagnosis to become clear or a second opinion. Genetic tests may distiguish between RA and the spondarthropathies (like PsA) but that may not be done because of cost.
Thank you Kelly for the response. My doctor has ordered the HLA B27 test for me and I was wondering why. Is this what you are referring to? What other genetic tests are there? I have no problem asking for them. Thanks again for for your response and for creating this very informative website.
Yes, that is one of the first ones done to help make that distinction. If possible, ask your doctor what the tests are for just like you ask what each prescription is for.
Hi there…I dont have any diagnosis yet, my gp and rheumatologist are treating me as having a “medical condition” for almost 4 months now…mostly because all the bloodwork are “negative”. I am very frustrated. It feels like I have a constant flu (dry cough, frog in throat, headache, tired – but no fever)..body aches…stiff arms…stiff fingers – not only when I wake, but almost right through the day… swollen,painful knees – both…and it feels like the little bones in my feet hurt all the time. I’m fatigued and a little depressed. My jaw hurts and there are now little bony things under the skin in the middle joint of my 2 little fingers and on my feet. I just get the feeling the doctors don’t take me seriously… because of the negative blood tests. They’ve only given me painkillers (which really don’t help). When someone tells you something long enough, you start to believe it…and the doctors have been telling me its “nothing to be concerned”…Am I turning into a hypochondriac? Should I get a “third” opinion? Thanks much!
I was dxd with RA a couple years ago, but I have ongoing pain in my lower back/buttocks. Do you know how fast a spine can fuse, how many months? Can you get nodules or bony growths on your tailbone or sides of the knees?
OK my Warrior friends,
I’ve been lurking on this site for a few months and now I think I need your help. I am a 34 year old woman with a long, and distinguished history of RA and Lupus in the family. In early February, I developed symmetrical swelling and pain in my hands. The pain has “blossomed” (trying to stay positive!) into my wrists and elbows. I’m having significant difficulty with basic things like door knobs and stick shifts. My veteran Rheumatologist (who does not accept voice-mail from patients, nor use a single computer in his office!) has informed me that though my bone scan did reveal some inflamation in one hand, every drop of the gallons of blood I’ve shed for him is sero-negative for RA. Five days ago he sent me home with Prednisone (30mg 1/day) and the pronouncement that “if you don’t respond to this, then it isn’t RA, and I don’t know what it is.” Well, I’m not responding. In fact, yesterday, I developed symmetrical pain and swelling in my knees. Friends, I’m secretly TERRIFIED of ending up in a medical stalemate with this condition! Has anyone else “failed to respond” to steroids? Could it actually be something else? What? I would be THRILLED to read ANY advice you can offer! …Thanks
I have failed to respond to prednisone also. My dose was lower than yours, but I have heard from several others who don’t respond to it. It’s not common but I’ve heard it.
The only “advice” I can offer is to find a doctor who will work with you if this one won’t. The symptoms sound like RA, but even if they aren’t RA, SOMETHING is wrong and you need to be treated. RA does not present the same in every patient – in fact if you’ve been reading comments here, you’ve seen many versions of how it can look – especially in the early years. Rheumatologists vary greatly in how they view the disease, how they treat it, & how they treat patients. Don’t give up.
Also, did you get a disk with your bone scan? You can get that from the radiology firm. It would be good to know what “some inflammation” means.”
Hi, Since April I’ve had pain in my shoulders and hips. This quickly spread to my wrists, knees, ankles, elbows and hands. Went to doctors early on and he did rheumatoid factor and ES? test, came back negative for factor and slightly raised for other. The only swelling I have is at my ankles (doctor said this doesn’t count) and a slight raise above my wrists. After persistant visits to doctor finally got rheumatology appointment ( as all my joints crack) but I’m worried all they,ll be interested in is if my hands are swollen, do you know where to find figures on how many people are negative and have no/very little swelling.
I don’t have figures, but please read the hundreds of comments here – click here. Hope you are still reading. Sorry my reply is late.
I have swelling at times in my knees, my feet, on my hands..my fingers swell really bad for a day or two, and then go away. I noticed that it’s always on my joints when the swelling and pain start. I haven’t been diagnosed with it yet. I have kidney and heart disease. And an auto-immune issue that hasn’t been determined yet. My elbows and wrists swell and are warm also. Could it be RA?
Hi all, firstly it’s a myth that every single RA case responds positively to steroid treatment. Other meds such as DMARDS have varied responses based on indiviudal variations, so why would steroids be any different??
Secondly, a negative blood test for either rheumatoid factor or any of the other markers, including ESR do not exclude the possibility of RA. I tested positive for RF early on , but as I became more poorly, the RF vanished. I was diagnosed with fibro, based on an absence of markers. I tested positive for the HLAB27 marker – one case of ankylosing sponylitis in the family, but four cases of RA, including my mother. The symmetrical swelling and redness, which has now finally affected my hands, has led to a diagnosis of RA, with some lupus features ( everything but a positive ANA actually!), with secondary Sjogrens and Raynauds. Ive had thrombocytopenia for at least 15 years, and this is most consistent with the lupus, along with the rashes, and other symptoms. My compliment levels were low – again not consistent with RA as that tends to throw up normal or slightly raised compliment levels.
My rheumy has carefully reviewed my case this past 12 months, and a microvascular study turned up secondary raynauds – to which she said “we need to evaluate quickly what it is secondary to…” Good move on her part. I tried hydroxychloroquine with superb results for the lupus symptoms, but the side effects were ghastly. Im now on mtxt. No improvement yet after 2 months. I am trial ling it for 6 months, if I dont respond we try something else.
Steroids worked for the pain in my hips, but didnt touch anything else – my joint pain and inflammation is in every joint, including my jaw, neck and ribs!
With regard to the HLA B27 marker – it indicates a succeptibilty to Ankylosing spondilitid, Crohns and uveitis, along with other inflamatory type arthritis. Its rare to have that marker AND a positive RF like I did, but statistically, ginger hair, rhesus negative blood and spina biffida occulta are also very rare, yet here I am, an anomaly typing away!! Plabe crashes are rare, too, but that is no comfort at all to the passenger who realises that the plane is plummeting….
sorry for the typos – eye problems….
Does RA have an effect on joint implants?
I a 40 years old. I have been suffering with chronic pain for as long as I can remember. As a teenager, I had severe burning in the middle of my back. The doctor told me that it was toxic waste (no kidding!) I also had unexplained hip pain. My knees were also falling apart. I was a volleyball player, but nobody else’s knees were falling apart. By my senior year, I had 6 surgeries. I now am in the need for 2 total knee replacements. My back hurts. Sometimes when I wake up, I cannot move my neck. My hands are swollen. I feel like I was hit by a truck most of the time. I have been diagnosed with Fibro, but only because my RA test was negative. I have had years (in the past) where the pain lessened, but since about 5 years ago, it seems to be getting worse. I do my best to function, but it ‘s hard. The fatigue is horrible! Please help with any advise. Amanda
I hate that “hit by a truck” feeling Amanda! What a brave girl you must have been to go thorugh all of that!
We do have a page about fatigue you might want to read here: http://rawarrior.com/25-tips-to-manage-rheumatoid-arthritis-fatigue/
Hi Kelly, I thank God for your site. I am a 33 yr old African-American woman. I was sent to a Rheumy in 2008 after receiving a positive ANA. Primary suspected Lupus. Rheumy diagnosed with FMS. I have been treated for FMS with numerous meds of the years. However, more symptoms have appeared with pain that seems to worsen as time goes on. Symptoms include: pain and stiffness in both wrists and fingers and knees, stiffness in ankles and feet, chronic fatigue, pain in chest with deep breathing (no cold symptoms) numbness and tingling in fingers, hair loss, loss of appetite, always cold. Just left appt. with Rheumy today discouraged as she simply gave me trazadone (anti-dep) to try and two injections in my wrists that have made my stiffness worse this evening. She said she was limited in what she could prescribe because my kidney function came in at 1.55 in previous bloodwork. She said not to have any NSAIDS. However, it was in normal range during the most recent labs. I have an aunt and cousin with Lupus and they have so many of the same symptoms. I asked my Rheumy if it was possible this is Lupus or something else and she said “oh well I can screen to see if that’s what it is if you like.” I must mention that I really believe she only agreed to test further because my husband was a very active participant in my visit with her today. She would like for me to get the bloodwork done a week before my next appointment which is scheduled 3 months from now. Meanwhile, I am left exhausted and in pain for the next few months. I came across your site today and noticed I have several RA symptoms. After reading some of the comments, I am definitely going to try to get in to see a new Rheumy.I have identified a doc. However, she’s booked until March. My primary doc simply equates everything to my FMS. So, I don’t feel she will be helpful with this. Not sure what to do meanwhile. Question: If you see a new rheumy, do you think the new rheumy will simply go by whatever dx the previous rheumy gave? Thank you for creating this site. I look forward to hearing back from you and your readers.
I know what you mean – what about the next three months? Is it fine to leave it as is?
If you try another rheum doc, you have the choice about whether you tell them everything about this consultation or not. You can ask for your labs or the doctor’s notes and bring one or both of those. Or you can just make an appointment for another rheumatologist because you think this is a “bad fit,” as they say. Leaving “discouraged” and with an anti-depressant instead of dealing with the symptoms is not a good sign. Perhaps you can make the appt with a 2nd opinion dr and don’t cancel the other appt until after the appt.
There are many questions – When was the kidney bloodwork? Has it normalized? Do you need to see a specialist for that or was there an explanation for it already? I don’t know if she offered you any alternatives if she said no ndsaids – did she offer you prednisone? Or any dmards?
Finally, you should consider seeing an endocrinologist because some of the symptoms in your list sound like they could be thyroid or other hormone issue. It should be ruled out before it’s all just blamed on the RA too – make sure you don’t have more going on. I sympathize with all of this. And you’re right to not accept someone just “equating it all with FMS.” That’s such a fuzzy diagnosis that doctors who don’t know better will just blame everything on it like you said – and that is no answer – or treatment.
Thank you for your response. The bloodwork was at the end of October. Bloodwork in January appeared normal. However, my rheumy refuses to prescribe any NSAIDS because of the elevated numbers in October. Yesterday, was the first day the nurse suggested I see a nephrologist after my husband insisted the rheumy explain further about what may have caused the spike and what I am supposed to do about it in the future. In the three years I have seen her, she has never offered prednisone. Last night, I read numerous comments on your site re: the relief found after taking prednisone. I called the rheumy office to speak with the nurse today and she said that if the pain doesn’t subside in the next week or so to call back and ask the doctor if I can try the prednisone. Because I asked, the rheum ordered xrays of my wrists and back. Meanwhile, I am left with nothing for pain. My thyroid has been checked several times and everything appears normal. I am definitely going to schedule to meet with a new rheumy for a second opinion prior to my April appt. with my current rheum. I think you are right about a visit to the endo as well. Again, thank you for your site. I will keep you posted.
I’m home for just a moment and back out to another dr appt – our day is full of them today.
You’re th only person I’ve replied to today – but I wnat to make sure to say – there are some pred posts here you can search for & serveral ways that it is prescribed but it is also a philosophical thing – I’ve had 2 rheum docs myself over the last 6 yrs and they were both like yours: anti pred. They rarely prescribed and only very low doses and never suggestied it & only gave it if you really asked for it. Some rheum docs use it for most patietns, trying to give the inflammation & comfort of the patient a high priority but the drug has a bad reputation that it earned of course – so many other docs just don’t use it. Thyroid is another thing that levels can be tricky & what one considers normal is not to another so that’s hard to rule out sometimes (I’ve had thy. dz since age 15 so I know a lot about the tests). Anyway, keep fighting – I know it’s all a “pain.” But we fight to be as healthy and strong as we can. I’m glad your husband is w/you in it.
I found this disturbing and really very scary to think that we may find an addtional problem to solve because of the ignorance in our government and public at large of issues that we face daily.
I have a say: Sara in Rio Rancho NM
First off I have to say this site is amazing!
I am 31 years old, married for 11 years and have 3 beautiful children. About 2 years ago I started experiencing hip pain when I would bowl and it would happen about 95% of the time I bowled. About 4 months later I became very sick with a fever, joint pain, exhaustion and some red blotchy rashes on my body in different places. Went to doctor they said that I had Lymes even though the test came back negative and treated me with 21 days of antibiotics. I finally started to feel better after a week of feeling fine in the morning and then a couple hours later I would start running a fever again and have to lay down. So fast forward a few months and I end up with a severe case of strep throat (which I haven’t had since I was in 6th grade) – don’t know if strep is related to RA, but I’ll throw it out there. At that appt I also had high BP and the doctor said it was most likely because of the strep, but wanted me to come back for another BP test in a week. Go back to doctor and BP is still high so he puts me on meds. At this appt. I tell the doctor that I’m just exhausted all the time and all I want to do when I get home is sleep and when I do go to sleep I’m out in like 2 minutes flat. He tells me it sounds like depression and gives me some anti-depressants and tells me to start exercising and that he wants me to lose 20 lbs by the end of summer. ARGH! Really dude I’m not depressed – I’m TIRED! Anyway. Now the hip continues to bother me anytime I bowl (I bowl alot)or try to run (I love to run). Now about 4 months ago I started getting the hip pain while sitting at my desk at work and pain shooting into my groin. This concerns me so I make an appointment. Doctor looks me over and says “Well it could be bursitis or it could be RA, but lets just watch it for a while.” I HATE DOCTORS! Because the last two years of me watching my hip hurt haven’t been enough. So about a week after I see the doctor I have this burning feeling in my shoulders for about 4 days, burning stops, but then suddenly I lose the strength in my right arm and have really bad pain in my shoulder in the joint. I can’t even lift my purse with that arm. This lasts for a few days over the weekend and it’s gone on monday so I think I must have injured it or pulled something (even though RA is nagging my mind). Then the next week I start having pain in my feet. I feel like there are pins in all the small bones in my feet and it hurts my heels to walk in the morning. One day I woke up and felt like my back and ribs had been crushed, but thankfully that only last a few hours. I’m tired and I have run a few fevers in the last couple weeks. I used to run on my treadmill, but now can only walk at a 2.5 mph pace, but I do it on an incline to get the best workout I can in. My fingers are swollen now and I can’t even get my wedding ring off. And I’ve tried taking 2-3 Aleve and it doesn’t touch the pain which I can say is a different pain than I have ever felt. It’s like a constant dull ache down to the bone. I however, am afraid to go to the doctor again. I hate that they make me feel like I’m making it up. I don’t know of anyone in my family that has RA, but I have several family members that have other auto-immune diseases. Does this sound like RA and what are the possibilities of me having RA if no one else in the family has it?
Have you received any further answers? You kind of sound like my case with sparatic pains. This June will be 3 years.
3 years ago I got Pavro Virus. When running tests during that treatment I tested positive for RA. Parvo fadded out and RA moved in!?
Was really swollen in hands and feet in am and then late at night. Went to a Rhumey, he put me on Plaqeunil.
Over the next 1.5 years my symptoms jumped all around to feeling fine for several months to slowly in agony then to settling in some spots and constant pain.
Now I would wake up feeling okay but hands and feet stiff sort of and then by the end of the day (or earlier if I’m active) and exhausted. I’m stiff after sitting for just half hour or more, the longer the stiffer I get.
Ditched that Dr. and now going to MGH. First appt she ran xrays of hands and feet and ALL lab work!!! (right hand index finger and knuckle swollen 24/7 and painful and at times not even usuable.
Did MRI of that, it showed swelling, hands and feet okay. All labs okay (and that is for EVERYTHING you can imange)and here is the kicker, no longer testing postive for RA nor elevation in swelling!
Monday will be 6 weeks that I’ve been on methotrexate. She is trying the big guns to hopefully blast whatever is going on. I hear it can take months for it to start working. I’m getting zero relief right now. I’m exhausted and ready for bed at 8pm.
I’m an active person and love to socialize and between being exhausted (even with folic acid) and in pain it’s a struggle to make it to 10 pm.
I was told I couldn’t do any damage to my joints so I have been on a routine of alternating piliates and power walking/jogging every day with one day off a week and also with some yoga too. I’ve passed that pain threshold for the working out but now it’s getting worse. No rhyme or reason for either workouts and the pain. I signed up for a 5k on Mother’s Day and that has been my goal, I’m doing it if I have to crawl!
I’m back to MGH on May 15th and I’m usually an upbeat positive person always finding the silver lining in anything but I’m am so damn discouraged and it’s a personal struggle with myself to keep going in trying to get healthy
Keep fighting the fight and I’ll keep giving it my damnest too!
Sue, I have not gotten any answers. I dont’ have any time off of work for another month so I’ll have to wait till then to see a doc again. What also sucks is my deductible on my health insurance is going up to $6000 from $1500 so medical is going to be very expensive for me come July. My shoulders now seem to hurt about 90% of the day. My hands sometimes now have shooting pain with causes them to freeze up. My feet hurt all the time now. I can no longer wear heals at all. Even the top of my feet hurt. I swear my pinky toes are deformed into a claw position and those toes are the ones that seem to hurt the most when my toes have pain. My elbows hurt. My hands hurt to just rest them on my hips. When I walk on the treadmill my hips hurt so I try to relieve some of the pain by holding on the to the bars, but then my hands, elbows and shoulders hurt. I’m just really trying to lose 20 lbs before I go back to the doc so I can stop them before they say “maybe you should try and lose some weight and maybe that’ll get rid of the pain.” But if I can take 2-3 aleve and not have any of the pain go away then something must be wrong.
Oh I also went to the eye doctor recently because my eyes are burning and feel gritty all the time and he diagnosed me with “dry eye” and gave me some OTC drops. They aren’t working though so I think I’ll have to call him back and request something different.
I had a hairdresser one time tell me she thought I had psoriasis due to some thick scaley patches on my scalp (very minimal). In November it got worse, but close to my hairline. I started using that T-Gel shampoo and it cleared up pretty good, but when I asked my doctor about psoriasis she said it looked more like seborric dermatitis. So I figured she was right and that it wasn’t psoriasis because it never got to be terrible like the pictures I’ve seen on the internet, but I still wonder about whether I might really have psoriatic arthritis.
Just reading some stories and finding a lot of good info. I have had pain in fingers and hands for years, probably going on 5 years. The pain comes and goes. Flares and then improves. I recently have been having pain in my wrists and elbows as well. The pain is a bad ache and an intense burning feeling in my hands, wrists- both sides. I have a hard time holding onto anything for more than a few seconds because of the discomfort.. or I drop it. I have also had pleurisy and keratitis (inflammation in my eye)before. Aleve not helping. Fingers feel stiff and uncoordinated. I saw Rheumatology in 2008- labs were normal other than elevated sed rate and crp so she just brushed it off. Got so frusterated I haven’t been back to MD since. Saw PCP yesterday since pain is worsening and we are “starting from square one” rechecking everything- labs, have a nerve conduction study done. Just interested to see what everyone else has experienced- he seems to be leaning to RA. I do not want to have RA, but I DO want to find out what’s wrong with me. Thanks for listening.
Hi, Please help. I tested positive for Rheumatoid factor and anti ccp protein 3 weeks ago. A week ago I started taking Diclofenac which is helping alot. I had bloods taken this week and they have now come back normal. Is it possible to have rheumatoid factor one week and then gone in a few weeks? I have aches and pains every day, have nodules on my fingers, morning stiffness that lasts hours, the list goes on. Can I have RA if my tests are normal? Any advice would be greatly appreciated.
Im just wondering if there is anyone out there I could please talk to?
Since February 2012 I have been suffering Bi-lateral joint pain in multiple joints. I had a flu like virus, followed by a sickness bug, these were in quick succession of each other.
I then started having really sharp pains in the knuckle joints of my fingers and joints closest to my hands, also my wirsts,elbows,knee’s and neck. The pain started with aching but also became really sharp, I then developed bi-lateral Bakers cysts behind both knees which later ruptured leaking fluid into both calves – these ruptured before my knee scan! I also had pain in my big toe joints and the balls of my feet felt uncomfortable and swollen when standing on flat ground. At the same time I developed large white floaters in the peripheral vision of both eyes – I went to an opthamologist who could see the floaters and also did a dry eye test – which showed my eyes were dry. At the start of this I had problems with my speech for at least 3 solid weeks it could of even been longer – my speech changed in pitch and tone and it was quite difficult to get words out. After a time all this pain seen to notch up a gear, my hands became swollen between the metacarpal heads and I watched a lump come up on the knuckle of my index finger. I had blood tests taken for RA – Esr, RF, ANA all negative – the lump on index finger was X-rayed and is not bone but Dr said soft tissue swelling – it is still there and not changed. I was told to take Nayproxan for a month which made me sick every morning but I think it helped my speech return – I did stop after 1 month because of the sickness.
The pain became relatively constant the fatigue has been so awful I have suffered from really cold hands and feet and also noticed that when I sit in a chair my feet turn purple I am a flip flop girl when the weather is nice – my purple feet did not go un-noticed, I only had one incidence of blue coloured fingers.
I was refered to a Rheumy – blood work taken, Lupus etc all negative. For a period of maybe 6 weeks over the summer my symptoms improved and I was just left with intermittent pain in my elbows that felt like when you bang your funny bone.
Then it came back! Whereas last time it started in my hands this time it started in my feet – mainly my big toe joints and the joint that connects toe to foot, this pain is quite excruciating and it can hurt to put weight on it – I would describe it as stabbing pain, next back to my knees which really ache when the aching gets bad they start to feel hot from inside out – I thought I had been bitten on my knee because it became really hot and the left knee went red – I swell up if I get bitten so put it down to that – however the next day no bite mark! I have only had redness in one knee so far but heat in both. The eye floaters increase along with the rest of the symptoms, I cannot tolerate the cold and the weather does affect me. This 2nd time it affected forefinger on left hand which felt like it was twisting and the top end of finger hurt near nail and again there is a slight lump not as big as on other hand. generally I have aches and intermittent stabbling pain in all fingers, although the wrists are not as bad this time the elbows reamin pretty constant as do the knees. I know when things are going to get worse because usually my neck becomes involved. When things peak I dont know where to put myself. I am now taking Diclofenec which thankfully I can tolerate but does not take away all the pain.
When the rhuemy first examined me – it wasnt thorough but he twisted a few of my joints and said definately not RA,it was approx 6 months after initial flare, so off I went. I have another appointment in June next year but I am suffering and I’m unable to work.
My problem is because my blood work is all negative they want to send me to a Chronic fatigue specialist – I am open minded and will go but I feel they are barking up the wrong tree! I have researched bakers cysts and lumps on fingers all individually which eventually led me to read about RA – I’m not trying to talk myself into this but it does seem to fit exactly what I feel.
I want to try to help myself as I know something is not right and I’m thinking of going privately to see another Rhuemy, sometimes I feel like I’m going nuts but there is a little voice inside my head saying ‘believe in yourself’
My question is – is it possible I could have sero-negative RA and those of you that have this do my symptoms seem to match. I’m ready to fight to be heard but I guess I’m looking for reassurance.
I would really appreciate any feedback, I have a family and 3 beautiful daughters but they worry about me and sometimes I just can’t hide the pain.
Sending love and light to you all
Jo Inglessis (U.K.)
Well, I’m officially lost. My grandmother and mom both have RA. My great grandmother had RA and was wheelchair bound. On my dad’s side, my grandfather also had RA and was also wheelchair bound by the time he was in his 50′s. I’ve seen what it does. It’s ugly and insidious. I am only 30. I was diagnosed with Carpal Tunnel in my early 20′s. A couple years ago I started having problems with my knees and sciatica. Last year it was my back. This year it’s been shoulders, fingers, and feet. I don’t have excessive swelling but the joints feel like they’re on fire. I’m exhausted all the time. Getting going in the mornings is H-E-double hockey sticks because I’m so stiff. I had a big flare in June with swollen, red fingers and elbows hurting so much I couldn’t open my front door. My primary care Dr. did labs for ANA and RF. Both were negative and he blew it off. I begged for a referral for a rheumatology consult and finally got it. That doctor did CCP labs which came back with “strong positive” results. He said he had never seen results that high without a postive RF. He diagnosed my pains as Fibromyalgia. I understand that diagnosis and it makes some sense, but I KNOW there’s more to the story. I have tried for months to get him to help me and he won’t. For one thing, I am a Type 1 diabetic so most of the DMARDs and biologics are out of the question for me because they’re immunosuppressants. He gave me 5mg of Prednisone for two weeks. With such a low dose it took almost the whole two weeks before I started getting any relief. At my follow up appointment he told me that since there wasn’t any improvement with the prednisone I don’t have RA, it’s just the fibromyalgia, and I can come back in 6 months. I have Tricare and because of that, I HAVE to be seen at the military treatment facility. Tricare will not approve me being seen by another network provider. I feel like I’m stuck between a rock and a dead end. Any suggestions? Thank you!
I started going to a rheumatologist after being referred by my primary doc because I was having all-over body aches, especially in the feet and hips. He said I had bursitis and that because my feet were bothering me I wasn’t standing/sitting/walking “correctly” and that was why my hips were hurting. He gave me an anti-inflammatory and tramadol and the pain in the hips did subside for the most part. I haven’t felt sharp pain there for a while.
My feet hurt so badly first thing in the morning that I stumble when making those first few steps. After that I can walk but my feet are very sore for quite a while after. Sometimes when I walk it sounds like I have Rice Crispies in my feet – this happens at random times.
I have dry eyes and dry mouth but at this point eye drops and frequent sips of water keep that… livable.
I get stabbing, burning pains in my toes – on the left foot in particular. The balls of my feet, the big toes, and for the last couple of days it’s like a mini-electrical storm inside. I don’t know a better way to describe it. Like a ghost with a hot poker testing to see which joint to live in before moving on to the next?
I have a rash between my breasts that keeps coming back. Not a big one, but I haven’t had any sort of rash since I was a child (I’m 46).
I do not have what I would consider fatigue although I’m sleepy in the afternoon sometimes, but who isn’t? I would not call my pain symmetrical at this point.
My doctor is monitoring my bloodwork but at this time tells me I need to wear tennis shoes because I have arthritis and that I have “sicca syndrome – don’t worry about it.” I’ve had arthritis in my knees since I was in my 20s and I can tell you that something else is going on here. I’ve been healthy all of my life and there is definitely something gonig on in my body. I guess eventually something will show up in my bloodwork or something else will go haywire and then I’ll know…
Thanks for reading. ;-(
I have a question to the group, Sorry to the men in advance. I am curious if any of the women who are post menopausal and then been diagnosed with RA begin to have a problem with severe genital itching not internal. I did a quick search on webmd and they mentioned lichen sclerosis as something that can occur in women that are post menopausal and it is a disorder of the immunological system. It might be something men deal with also. And if you have what have you done for it. Thanks in advance. Cathy
Hi, I posted once in another section on here, and I can’t find it to update on my condition! I have been suffering with neck pain, pain in my hands (particularly my right), and pain in my right shoulder, and I have a hard knot on the right side of my head at the base of my skull. I have a lot of pain in my heels when I walk, and soreness in my knees. Every time I get up from a sitting position or walk on my stairs everything cracks and pops. This has been happening for almost two years. I didn’t have health insurance so was putting off getting checked out.
Thankfully I have health insurance so have been seeing a new PCP. My frustration comes because all my original bloodwork came back fine. My doctor noticed that all my neck muscles were tense and tight. She thinks my knot in my neck is a pinched nerve, or herniated disc. I was sent for physical therapy, which is doing absolutely nothing. I have had intense pain in my right middle finger going up to my elbow, so was sent for an EMG to test for carpal tunnel. That test came back fine. No carpal tunnel, no nerve damage, no pinched nerve. I told my doctor that my grandmother had severe RA and passed away last year. My doctor ordered another CBC blood test, also another for RA, and she muttered something about testing for uric acid….not sure what that is for. I haven’t gotten my results back yet. My appointment is next week. I guess I’m just venting because I feel like I’m getting no answers. My physical therapy is insanely expensive and I’m not sure why I was told to do that without an actual diagnosis of ANYTHING.
I’m leaving an update on my condition. After a lot of chronic pain in neck, shoulder, arm, and hands, I was given the blood test for RA and it came back negative. My doctor says all my issues are now stemming from TMJ. Would TMJ cause joint pain in my hands??? I have read in various places that the RA blood test can be negative but still have RA. My doctor shrugged it off after the blood test. If the pain in my hands wasn’t so debilitating then I would be ok, but I’m still kind of worried.
Hi Sara, sorry you’re dealing with all this.
I think the confusion is about the blood test. There is no RA blood test. There are antibodies that are commonly present in the blood of Rheumatoid patients – rheumatoid factor antibodies and CCPA or anti-ccp antibodies. The Rf are present in about 70% of people with the disease and the anti-CCP are present more often, maybe over 80% of the time.
So first, I think it would be a good idea to ask what tests were done and how they interpreted them. Also, it’s a good idea to have your own copies of all your lab results so you can know what they are and how they change over time.
On your point about the TMJ, of course you’re right. If he shrugged at you, and made a comment like that, I dont’ know if he’ll listen to reason. So you’ll probably have to find another doctor who will take your symptoms seriously.
I agree completely with your last statement: if it wasn’t so debilitating then I would be ok. I’d very much like to never see the inside of a doctor’s office again. But I go because “I’m still kind of worried.”
I’ve been having pain in my finger joints and stiffness in the mornings for about three weeks now. I also have a thyroid condition. I started googling and the first thing that popped up that matched what I am feeling was RA. I was terrified. I know one should not diagnose oneself, but I’m still quite scared. I have an doctor’s appointment in two weeks, but I’ll try to get one sooner.
Anyhow, I stumbled upon your website and I felt a little bit relieved. I see that people with RA can still live meaningful lives with somewhat manageable pain. I suppose I still have a lot of worrying ahead, but I can at least focus on something positive.
Thank you for this. Your kindness has made it all the way to Buenos Aires.
There is a wide variety with the disease itself and with responses to treatment – even with the same person over time!
Yes, you’re right – do not give up being positive & hoping for better days. Do not be afraid that the worst will happen because there is no way to predict. Just take one symptom and one prescription at a time.
And having another condition is common. I’ve had thyroid disease since I was 15 – that is one of the common comorbidities.
Good luck with the doctors!
Thanks for your reply. All of my lab results came back negative, so I guess all I can do now is sit and wait. My finger joint pain is not completely better (though it nearly disappears some days), but it is not worse either. Still, I’ve only had this symptom for two months, so I suppose I have a long way to go before I get any certainties. We’ll see what happens.
I want to thank you again for your help and for the work you do with this website. If you ever need any materials translated from or into Spanish, that’s what I do for a living, so I’d be very happy to help.
I am so confused. I’ve been diagnoised with a lupus like disease (there are antibodies leaking from my cells but the specific kind cannot be detected with current tests that are available) and rheumatoid arthritis . I was told I had to have rheumatoid arthritis because my anti-ccp came back positive. But when I look into it I discovered anti-ccp test comes up positive for errosive lupus. I really do twang to have,up us because its scary but I want to be diagnoised properly. I have two young children and if I have lupus I need to be treated appropriately and I feel like my doctor won’t listen to me.
When I read about lupus joint paint it sounds a lot more like what I experience.
- little swelling but very painful
-pressing on pressure points on my arm makes the stiffness disappear u til I let go. This makes me think the joint pain is tendon /muscle related
- I never lose my range of motion while I’m swelling/stiff (except for my trigger fingers). I can always passively move my joints.
- the pain would move from joint to joint on my hands from day to day. I felt insane and others made me feel like I was making it up. From what I understand rheumatoid arthritis stiffness is in the same joints for a long time. Mine was in my hands for a month and a half but always different digits and joints. Then my shoulder for a couple of days.
Hi Sarah, I don’t know which one you have or what your diagnosis should be. I’m sorry you are having a hard time finding answers.
I can tell you that some of what you seem to have read or been told about RA is inaccurate. It does cause a lot of pain, even without obvious swelling, and it does seem to “move around” by being more severe in different joints on different days. RA does also affect supportive tissues.
Have you gotten a second opinion? Maybe at a university or somewhere where they do research?
Thank you for your reply. I’m glad to hear it sound more like rheumatoid arthritis (never thought I’d say that!). I have an appointment with a new doctor who is very highly rated at Toronto western in two months. I hope she can give me more answers. My current doctor has me on one lupus medication but never explained what lupus was. I didn’t even think about it for a month because I was so overwhelmed with the thought of rheumatoid arthritis . Then I looked it up and saw that people with lupus now have a 70% survival rate after 20 years and I freaked. My kids will be in university in 20 years. I need to live longer than that! I can’t believe the severity of it or even what it was wasn’t explained…
Although she told me rheumatoid arthritis wasn’t too serious either and I’d live a normal life, a normal life span and be able to have more kids (in the next sentence she prescribed methotrexate and didn’t mention I should stop breastfeeding until I asked). Sigh. I think she just wanted to be positive. Must be depressing working in the field of incurrable chronic diesases.
The two diseases are very similar and the medications are often similar too.
My advice is the same whichever is the diagnosis Sarah. Take one day and one symptom and one prescription at a time. Look for good information – like you are – so you can be involved in the decisions. Ask questions – in case they forget to tell you like she did. And find support as needed. Don’t overwhelm yourself with “what if’s” since there is no way to know the answers anyway. There are a lot of people who get through both of these diseases with happy long lives – so plan on that, ok? Take care of yourself.
Thank you so much for the kind words. I find that even on good days I’m so stressed I’m not enjoying my children or my husbands company. Sigh. It’s very difficult to relax when my anti-ccp is 250 and I’m told I’ll suffer from a very aggressive form of the disease. Sigh. And if its errosive lupus I’m sure what that enforces so like everyone else I have more questions than answers.
I am in limbo right now trying to get a diagnosis. I have had joint pain in my fingers for almost 3 years on and off, waking up with numb hands in the mornings on and off, in Nov my feet started to hurt and my toes, my pain is very minimal just achy. I have no swelling, no redness anywhere, my leg muscles ache sometimes. I have no fever and I feel normal, no fatigue. Also no morning stiffness, my pains come and go. My ANA, RA factor and ESR all negative. Lyme negative. My GP said he feels strongly that it is not RA. I just requested an anti-ccp lab so I can finally put my mind at ease, I just want to know what’s wrong with me, I will be ok if it is RA because I just want treatment to prevent joint damage if it is in fact RA. Any input would be greatly appreciated.
I’ve been to 3 Rheumatology Docs… in the last year. MY blood work says YES…but the docs still say no..because they cannot feel nodules. YET i’m in constant pain in feet/elbows, hands. I had one finally diagnose it…..but then spoke with ther other 2 and pulled back. I feel I”m getting more progressed. What shoudl I do?
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