The Post

Comments (110)


110 Responses to “Do I Have Rheumatoid Arthritis?”

    1. Chanda says:

      So many questions, so few answers. If anyone would like to shed some light, please do. I had surgery late August and started to have leg cramping which changed into major pain in both knees. It felt like I had water balloons in my knees each time I knelt down. Then my arms started going to sleep and may hands started to ache. Pain in both of my feet, sometimes they are very swollen after a day at work. Most recently (about 2 months) my hands are immobile in the mornings for about an hour. Eventually I can use them but not fully. It is difficult to hold a toothbrush, brush my hair or even shake hands with anyone. I have been to an MD who sent me to a Rhuematologist. She told me she was 98% sure I have RA but I wanted to be sure before starting medications. Test results all came back normal and negative. I go back to the Rheumatologist soon and wonder if it is possible to have RA or if I should be looking elsewhere? Thank you for reading.

    2. Heather says:

      Update on me: I finally got in with an RA doc…I tested negative for RA and she had no clue what it could be. She did a ton of blood work, which all showed nothing unusual except sed rate and C-reactive both elevated. She decided to have me do a whole body bone scan…did this Thursday and got a copy of it. I haven’t seen the RA doc yet, but from looking at my test and comparing to others on the internet, I’m pretty sure that I have RA. Both my shoulders, elbows, ankles, knees lit up brightly. My hands which have been giving me the most problem only in the last 4 months showed up…just not as brightly as all the others. I’m so glad that I was referred to have the bone scan. I just feel like it validated all the pain and other symptoms that I have been having. Very interested in hearing what RA doc has to say next week.

    3. Anonymous says:

      I’d like to remain anonymous but I felt I should write in. I’m 14, I’m in love with sports (especially volleyball) and in the past few months l have been diagnosed with juvenile rhuematoid arthritis and patella femoral syndrome by the doctors at primary children’s hospital. I’m getting steroid injections in my knees next week to help with my arthritis. I just want to know how you deal with the pain from arthritis and how you are treated for it, lts all pretty new to me and half the people I know say to get the injections and half say not to. I just need some input from someone who is familiar with how rheumatoid arthritis works on whether or not this is affective treatment. Thank You.

    4. Elaine Jordon says:

      I hope someone can give me some insight. I saw an RA dr today He is number 3. He said I have a mild case of RA but my test shows no inflammation. I am in pain, my ribs really hurt and it hurts when I breath and I also have shortness of breath issues. He told me what the problem was with the ribs but I did not understand him. he gave me a script for calcitonin nasal salmon spray. Has anyone ever used this. Also is it possible to have inflammation and low numbers. This is so confusing when the drs rely solely on test. I also have slightly swollen fingers and they hurt and my toes hurt, have lots of fatigue and my latest is headaches in the back of my head. I would greatly appreciate any feedback. Thank you so very much Elaine

    5. Meg says:

      Just want you to know that I’m taking heart because of this website that someone might finally agree that I have something treatable.

      Many years ago I developed widespread neuropathic pain. On and off I’ve had pain in joints and swelling of synovium causing ligament pain. I have all sorts of joint distruction in my neck.

      Because of being labeled as having a chronic pain disease, getting a doctor to agree to a rheumatologc diagnosis has been nearly impossible. Especially since I also happen to have a mild immune deficiency which my husband (a physician) and I think might be making any of the Rheumatologic serologies come back negative, since they all rely on your body making anti-bodies, something which my body can’t do very well!

      The last rheumatologist I saw literally didn’t even TOUCH me. His PA asked me a few questions, but was not very thorough and the Dr. didn’t ask me anything. They ordered serologies (which were all negative) and sent me on my way.

      I’m going to have my immune deficiency worked up again, so I can bring those results to my next Rheumatologist interview along with the abstracts of the journal articles that show that 20-30% of people with this deficiency develop an autoimmune disease, and it complicates the diagnosis there of.

      My hands and feet are very stiff and painful in the morning for an hour or two, but only a tiny bit swollen… despite the fact that the skin feels almost ITCHY. Pain in my hands wakes me up at night, which is a feat, since I have many years of severe chronic neck pain from the disc disease. My wrist, after several years of tendonitis suddenly developed a grape sized swelling which slowly diminished to a minimal size by the time I went to see the Rheumatologist.

      I’ve lived in chronic pain for many years. That is frustrating and difficult and annoying to have few and inadequate treatments, but you reset your goals for what is normal and you move on… but the prospect of having something that may be relatively treatable that might improve some of the symptoms I”ve been having over the last few years makes me giddy, only to have hopes dashed by dr. after dr. Reading some of the posts here makes me feel a little less crazy and inclined to push on!

      Thank you!

    6. kathleen heeley says:

      ive been diagnosed with RA 6 yrs ago ,have had numerous dmards to control it but my body as rejected then ,ending up with very low white blood cells so had to be taken off them ,,im currantly just on prednisolone 5mg ,and lots of paracitamol ,to calm the pain down ,i havent seen my rheumy since last yr ,but finally got a appointment for 25th of this mth ,hoping apon hope that he can sort something out as im finding it very very hard to walk now with bad kneesi am a 66 yr oold lady and i feel as if im being written off, this is the first post ive ever sent anything to so here,s hoping thankyou ,x

    7. Megan says:

      I am a 36 year old female, currently in the process of being tested for RA. My first symptom was back pain that started gradually and intermittent, then became constant and excruciating. MRI showed no spinal cord impingement but did have some degeneration. Was told I had the back of a 75 year old, and it was just arthritis. Given little treatment. Then one day my thumb started twitching and I would have pain in my forearm and numbness in a couple fingers. After showing negative for carpal tunnel, I was told I had tendonitis. Over the past year I have gotten so fatigued, that it has affected my overall activity level. Stairs and my normal activities get me winded, and I have no energy. About 4 months ago my hands started aching at the knuckles, then my shoulder, then pretty much all over. I wake up stiff and pretty much have pain all day long. My hair falls out, I have hoarsness on occassion, trouble sleeping, and Im quite tired of it all! Bloodwork so far has been normal. Tested for lyme disease, thryroid issues and more. Tomorrow I go to get my bloodwork done. I almost HOPE it comes back positive, because Im tired of people thinking Im crazy or a ‘whiner’ or its all in my head. Despite the fact that it does run in my family. My father is actually has seronegative RA diagnosed later in life. I dont want to wait that long! I know something is wrong with me…..maybe RA?

    8. Julia says:

      I am newly diagnosed and just started on 30 mg of prednisone 5 days, 2 for 5 days and then 1 till finished which I think should be about 2 weeks after the initial dosing. I also started methotrexate 6 pills once a week. I am already getting some relief for hand pain from the steroids.However,I am wondering if RA can cause circulatory problems with redness and change in color in hands from red to white when holding them up above my shoulders? This has even baffled docs and they say it is not Reynaud. I do have CNS problems, presently very bad RL, insomnia from prednisone I think. Doing xrays this week. Doc changed and said my ra factor was normal but crp(?) was not. Previously he said my ra factor was positive. Need to revisit this with him. My mom had ra and passed away at 52 from kidney disease complications. I have been reading your site for education and support. It helps me to say I am not nuts and wow other people are having the same issues. Thank You.

    9. Sussanna says:

      Hi! I have been reading your website for some time now and have found it to be a huge help!
      I currently am still being evaluated for possible RA or some type of arthritis but have not received a concrete diagnosis. It has been at least a 4 year journey to even GET to a Rhuematologist. I am active duty military (17 years) and will probably be medically retired soon due to the health complications. I wanted to share this story and ask a couple of questions in the hopes it help me understand better. Don’t let my slow creep fool you….I am only 41….
      I experienced the dismissal from the GP you have mentioned here. I have been referred to PT, psychology, orthopedics, and podiatry. I had asked for over 3 years to go to a Rhuematologist before an ultimatum from the podiatrist (bless him!) finally got me in.
      I have had the following while waiting to “get there”: low grade fever 2 years, positive ANA, elevated ESR, confirmed synovial inflamation on 2 different MRIs, debilitating fatigue, debilitating foot pain, shoulder pain, elbow pain and hand pain all bilateral. I have waited so long I have now had 2 orthopedic joint surgeries (elbow and shoulder) and they are talking about scheduling 5 more surgeries for feet and other shoulder. In this latest blood work I also had a low platelet count and severe vitamin D deficiency.
      What I have been offered throughout most of this is Prozac (really???), Motrin, and an assortment of braces, wraps etc. I have endured “The Look” more times than I can count. I am now a bit cranky when I have to see the GP (military is pretty restrictive so I can’t go somewhere else) and simply tell him what I think and continue asking for referral to outside specialists.
      I think I’m in the home stretch! The orthopedic doc and podiatrist have both insisted it’s an inflamitory arthritis of some type. The Rhuematologist is treating for RA but hasn’t put it in writing yet.
      Question? Can your RF level change? Does everyone have this RF or just some people? Mine was at the absolute top of the “Normal” range-one more point I’d have been positive on the last blood work but even then that’s really not all that high. Also, I have had swelling but not a lot of dramatic swelling. I’ve had a couple of occasions were I have had the hot/red joints but most of the time the visible swelling is minor to moderate. I did read your section on the blood work but I can’t seem to find if RF is found in everyone to some degree or if some people actually have no RF in their blood.
      Does this EVER end? All I want is a diagnosis so I can receive the correct treatments. I don’t think I’m going to do very well without it. I shouldn’t have to go down my stairs on my butt every morning till everything thaws out at my age!
      Thanks again for your website. No doubt it’s a calling and you should know it makes a HUGE difference!
      Susanna

    10. Canna says:

      Am sat here taking photos of my hands on my phone, because I know these inflamed knuckles will have disappeared next time I see the consultant, who will again look at me like I am nuts. Anybody else document their symptoms, either systematically or not? Any recommended apps or tools for this? Feel like I have to be my own advocate /detective

    11. Susan says:

      Hi Heather,
      Thanks for your reply and encouragement to go ahead with the bone scan. A lot has happened since March. After my first Rheumatologist, I was referred to the podiatrist. He listened and did an U/S of my plantar fascia which was more than double in thickness than it should have been. This resulted In an injection of steroid into my left heel. To cut to the chase, I saw the podiatrist three times in about a 2 month span and he said I had too much moving pain in too many joints along with much laxity in my joints in both feet. Quizzed me about RA if anyone had checked me for this and I replied I was sent to him from the Rheumy. He proceeded to tell me I needed to see a different rheumatologist so after 4 month wait I did. I had that 3 phase bone scan which I watched as I lit up like a Christmas tree from my c-spine, t- spine, L-spine, shoulder, elbows, and on down to my feet on both sides…hot spots as they call them. Every place that lit up I’ve experienced pain at one time or another. Now mind you that first appointment with the second Rheumy, she kept talking about osteoarthritis since I told her I had MRI on disc from 2011 where it shows I had 2 herniated discs with one being ruptured at L3-4. This occurred with no trauma. Anyway, I kept telling her my lower back doesn’t hurt never did but I have chronic neck pain and headaches in the back of my head. It was ignored and I was sent out initially with plain film x-rays of hips, knees and low back. She look at my feet and said oh you definitely have arthritis in your feet but diagnosis codes on my orders read osteoarthritis. I have never had the red, hot, hugely swollen joint(s). Labs keep coming back negative except she did check me for Hashimoto’s which showed positive antibodies. Plain films did indicate effusions in both knees and the radiologist didn’t seem to want to commit one way or the other since he stated degenerative changes or inflammatory changes to hips, knees and back. So, that’s when I got the bone scan. Totally different treatment on that second visit. There was empathy that I was actually in pain and it was acknowledged. She gave me a diagnosis of RA and started me on methotrexate and low dose prednisone 3 weeks ago. I have noticed a little improvement especially with my feet but still having systemic symptoms fevers, blah feeling etc. So, we will see what goes at the next appt. I’m worried about how will she tell if the meds are really doing their job or not. I’m requesting a c-spine film too since I have regular pain in this area which hasn’t improved thus far with these meds. I know it’s still early but that’s one area of anatomy with RA that sort of freaks me out!
      I hope Heather you have some answers by now and are on a path to improving. Thanks for mentioning getting your bone scan on disc. I have the written report but forgot to ask for a disc. I’ll add that to my list for my next appt.
      Thanks!
      Susan

    12. Sessy says:

      Recently I had a tramatic experiance at work and it shook me pretty good . I basically saved sum1 from chokin . Anyways a few days later i noticed pain n my left point finger which symptoms excelorated quickly . I’m not new to pain probs I’ve had a history of back probs which 2 yrs ago I stopped taking opiate pain meds for and hope I don’t ever Hav to take them again . However this situation in dealing with right now is a frustrating painful one. 1st off RA runs through out my family genes and my mother was diagnosed with it around 50yrs old. She has it hardcore and had taken many diffrent medications and rt now takin Humara .
      Getting back to myself I woke up basically one mornin for work and noticed my left hand was swollen up Lik a balloon . Looked as if fluid was in it on the top part of my hand . Joint pain and swollen joints on Tht rt hand at the base of my fingers . Middle ones mostly but also this pain moved into my wrists then elbows shoulders and hurt to the point I could text on my phone anymore CUZ the pain was intense n Tht made it worse . I had a lot of weakness also I noticed from my hands all the way into my shoulders . Then my left foot started acting the fool . Again swollen joints middle toes mosty at the base of them . Even had periods of time while on my feet at work I had to sit down CUZ my feet felt lik they were burning . The toes mostly and even had a pinkish color to those to. I basically was one big miserable hot mess fulla pain . Accompanied by extreme fatigue I Could gav slept for days and would doze off all day constantly here n there. I ran a fever also which seemed to not last very long maybe a few hours one day . My eyes really were annoying . I wear contacts and jus bought brand new ones n didn’t connect the dots TIL my mom told me but my contacts would cloud up to the point film wouldnt come off n I had to throw them away after a day of using them. A box of contacts Tht was SUPPOST to last me 2 n a half months u went thru in 2 in a half wks .
      At the momment I’ve been pushin myself to the limit with this pain and taking over the counter meds obviously NSAIDs . My employer doesn’t offer health insurance so I had to wait to apply for state thru the obama care which who knows if Tht insurance will even help me with w.e messed up crap I Hav CUZ at this point I don’t know exactly .i did break down and go to the ER after 2wks plus pain n my hands and feet looking disfigured and nasty to me from them being so swollen . Also I noticed the cold weather effected the color of my skin . Cold hands COMIN into the heat would turn this bright red color and parts of my hand almost looked blue lik a bruise . Thts how I would discribe it. Now after I went to the er they basically told me to see a rheumatologist n refered me to one . Again I haven’t been able to go yet and still hav a month or poss even 2 months b4 my insurance kicks in. A lot of the swelling had went down but they pain is there . If I bump my hand or try to take the cap off Sumthin almost squeezing or bumpin a joint or finger in a way ( doesn’t hav to be hard either) it’s painful . Almost a pinching aching burnin pain all at once tht when it 1st happen Tht pain feeling almost grabs u and makes u stop WHTEVA u doing . I know I can’t diagnose myself and haven’t haf the official test yet . I just know I have RA and somthing is telling me this isn’t a mild case and it’s not gonna be Tht simple for me that im one of those lucky ones . The ones Tht go into remission and nva get it again. I’m just starting my journey with this illness and trying so hard to be and hav been very strong and kept a poss attitude telling myself I will keep going til im crawlin on the floor. But honestly right now I just feel so depressed like I’m going to cry this is starting to get the best of me . I can feel this flare up like its gonna come back n hit me again by the pain levels n the way I feel . I’m just scared I read a few people’s stories and the fact of them taking meds that made their hair fall out etc . Tht happened to my mother at one point so Tht really hit me hard thinkin this is my future CUZ of the meds I hav to take if I can even get meds who knows . I’m just feelin frustrated from this pain and the fact I can’t get medication to help me rt now CUZ I hav no insurance just breaks me. Sucks I hav to suffer lik this for months before I can get any relief and who knows how bad of a flare up or whts nxt . I work full time in healthcare so I get to put on a happy face and take care of the next person when I can barely keep myself taken care of at times lately. I just don’t wanna move wish I could jus stay home . Moving hurts and I push myself constantly and have been for a very long time. I knew for awhile Somthing wasn’t right and haven’t felt good for the past few yrs it’s been a long time all I know . I just want this to go away im hoping the meds for this make it feel non existent shutting it down completely . This disease is brutal as far as pain goes n I hav the feelin even Tht brutal pain can get even more extreme so who knows how bad it could get . My heart goes out to all of u suffering with this . The fact my mother had this and I did kno Tht it was painful and caused a lot of problems but I had no idea what this was truely like until i walked in these shoes . I guess if any1 has any suggestions on SUMTHIN i can take or do to releve this just let me know or any other type of info Tht would be ok to . Lord only knows the questions I hav are endless . For now Im goin to take sum more Omega 3 vit , glucosamine , Tylenol and ibuprofen . Idk if any of Tht is doing a damn thing to be honest cuz it doesn’t take away the pain but I guess I’m hopeful Tht maybe it might work better one of these times I take them and actually be doing sumthin even if it doesn’t seem Tht way .

    13. Laurel says:

      Hi. My first bout was in heels and knees and lasted about 6 weeks. Then in Nov started again and added in elbows, shoulders and hands. My GP gave me a steroid shot and sent me for bloodwork. My google search says yes indeed steroids affect CRP and the other stuff, so no surprise the tests came back beautiful except for elevated ANA. 1 month after shot and I still have burning night pain but much better. Specialist appt in May. My worry – my elbows are big and lumpy and non symmetrical. Is it possible there is joint damage? My knees swelled up to the point of losing full range of motion in episode 1 and work fine now but remain ugly. Do others see joint ugliness associated with joint damage or am I just over reacting?

    14. Marina Harmison says:

      Hello. My name is Marina and I am 37 years young. My mother and grandmother had RA. My mother had a very aggressive case and along with Phnemonia complications, died at age 52 6 years ago. My concern is that I have a terrible, dull, aching left side of neck that I just cant get rid of. I also have the same type of ache in my left knee and my left wrist and top of left hand. Is this the beginning of RA?

      • There is no way to know for certain – the doctor may even say the same Marina. The blood tests especially anti-ccp might help you know, but some have negative results at first. Also, if the neck is still hurting maybe you could see a specialist & try to get an MRI – it’ common for RA / RD to start in the neck joints.

    15. DG says:

      This is my story, I’m hoping it somewhat matches someone else’s story: Three years ago I had unexplained swelling in my right knee w/ significant fluid. After repeated attempts at draining, injecting, using steroid shots, etc, the swelling would not resolve nor would the pain. After about 9 months, the Dr. went in and “cleaned things up”. Swelling went away. Fast forward to 10 months ago…my right hand randomly swelled up. Significant fluid, rush surgery to scrape the tendons and remove the fluid. The result was a right pinky that has stayed swollen and now has damage to the middle knuckle, preventing any sort of movement. Through all of this, I’ve been tested for RA and my markers always come back good. My inflammation levels come back low even though both the Dr and I can clearly see inflammation. Over the past 4 months, I’ve had seizing pain in my back (almost like i pulled something) at least 4 times. My left hand is now hurting, but no obvious swelling. Even though I can bend my left hand freely, it doesn’t feel as strong to me. My right hand bends with pain, but my pinky doesn’t bend at all. According the Dr., that latest xray showed damage consistent with RA. I’ve been on at least 3-4 RA medications, but none of them have solved the problem with the right hand and I’m increasingly feeling more and more pain throughout my body. My toes ache to where I literally need to stop walking to let the sharp pains pass. Since I don’t have the traditional signs (equal swelling on both sides, significant morning stiffness throughout my body, positive RA test, etc.), I’m wondering if it could be something else. For my hand, I’ve worked with one orthopedic surgeon and two rheumatologists. The orthopedic very early thought it was RA, the first rheumatologist didn’t think so, and the second rheumatologist is just now coming around to thinking it probably is. Do others have a similar experience where the obvious & common signs just aren’t there, but other things are pointing toward RA?

    16. Shashi says:

      Hi,
      This site has been so good for my research into RA! Too much generic info on other sites that just don’t go into the depth of info you need when trying to work out what is wrong with you!

      I am thinking I have RA. I am 32 y/o female. Currently waiting for my 2nd appointment with Rheumatologist but have seen my test results that he ordered after first appointment and they seem to point in the direction of RA but as usual in my complicated medical history, they are not definitive. I am worried that I’ll just be sent on my way at this next appointment as he didn’t seem to listen too much at the first appointment. My blood test results showed elevated ESR (has been elevated in every test for this I’ve had in last few years); elevated CRP (again, regularly elevated); and elevated C3 (Complement studies).
      My Anti-CPP and RF were negative and so were all the Lupus tests – ANA etc. My White Cell Count was only just within normal limits (low) – not sure if this has anything to do with RA? My thyroid levels are not quite right at the moment either but I have unrelated (?) congenital hypothyroidism.

      I was referred to rheumatologist after I had an infection in my foot that they initially thought was cellulitis and then i got told it could be gout. It didn’t sound like gout to me as first my ankle got sore for one night and then my big toe on same foot slowly got swollen, red and sore over the course of the week. (Gout apparently comes on really quickly). By the sixth day, i was unable to walk on my foot at all and the pain was terrible, my foot was red and swollen and it definitely seemed like cellulitis (but there was no cut, abrasion or other external source of infection). I ended up in hospital and had IV antibiotics which helped my foot get a lot better. I had to stay on oral antibiotics for the next 4 weeks or so. This was mainly because i still had pain and i didn’t want to end up in hospital again. Bone scan on my foot showed Periostitis and degeneration of mid-hind foot.

      Before I had this foot issue, I already suspected I had RA as I’ve had chronic lower back pain for at least a year and everything I have done (Osteopath, physio, intense exercise, light exercise, yoga, pilates) has not made it any better. Over the course of the year my pain has definitely gotten worse and its affecting my every day life. Before this regular daily pain I had lower back issues throughout my life that would come and go for small periods of the time but I just put it down to normal neck/back issues that i have.

      MRI, X-rays etc that I’ve had for my lower back show an annular tear at L4/L5, a benign tumor on L3, a bulging disc and degenerative disc disease showing in 2 of my discs in lower back. Xray showed ‘mild degeneration’. I also had MRI of my hips and that showed bursitis in both hips, a bit worse in right hip. Apparently no arthritis on scans.

      I have seen an orthopaedic surgeon for my back and hip issues but he really couldn’t help much other than to say there was nothing really wrong surgically so he referred me to physio. He said the annular tear was not the reason for pain as it was old as there was scar tissue around it. But physio and osteo treat me carefully in case it is the tear causing the issue.

      Also, now my toe and ankle (top of foot area, not really around the side-bony part of my ankle) are really sore on a regular basis.

      Anyway, I am very confused, worried, in pain.

      Do I sound like someone with RA?? Do my test results point to RA? Do you think because my anti-CPP and RF results are negative I will just be told I dont have RA and sent on my way? I am a bit worried that I’ll be sent on my way to keep living in pain at my next appointment, because my results are not definitive.

      Thanks for your time.

    17. Shashi says:

      Hi,
      This site has been so good for my research into RA. Too much generic info on other sites that just don’t go into the depth of info you need when trying to work out what is wrong with you!
      I am thinking I have RA. I am 32 y/o female. Currently waiting for my 2nd appointment with Rheumatologist but have seen my test results that he ordered after first appointment and they seem to point in the direction of RA but as usual in my complicated medical history, they are not definitive. I am worried that I’ll just be sent on my way at this next appointment as he didn’t seem to listen too much at the first appointment. My blood test results showed elevated ESR (has been elevated in every test for this I’ve had in last few years); elevated CRP (again, regularly elevated); and elevated C3 (Complement studies).
      My Anti-CPP and RF were negative and so were all the Lupus tests – ANA etc. My White Cell Count was only just within normal limits (low) – not sure if this has anything to do with RA? My thyroid levels are not quite right at the moment either but I have unrelated (?) congenital hypothyroidism.
      I was referred to rheumatologist after I had an infection in my foot that they initially thought was cellulitis and then i got told it could be gout. It didn’t sound like gout to me as first my ankle got sore for one night and then my big toe on same foot slowly got swollen, red and sore over the course of the week. (Gout apparently comes on really quickly). By the sixth day, i was unable to walk on my foot at all and the pain was terrible, my foot was red and swollen and it definitely seemed like cellulitis (but there was no cut, abrasion or other external source of infection). I ended up in hospital and had IV antibiotics which helped my foot get a lot better. I had to stay on oral antibiotics for the next 4 weeks or so. This was mainly because i still had pain and i didn’t want to end up in hospital again. Bone scan on my foot showed Periostitis and degeneration of mid-hind foot.
      Before I had this foot issue, I already suspected I had RA as I’ve had chronic lower back pain for at least a year and everything I have done (Osteopath, physio, intense exercise, light exercise, yoga, pilates) has not made it any better. Over the course of the year my pain has definitely gotten worse and its affecting my every day life. Before this regular daily pain I had lower back issues throughout my life that would come and go for small periods of the time but I just put it down to normal neck/back issues that i have.
      MRI, X-rays etc that I’ve had for my lower back show an annular tear at L4/L5, a benign tumor on L3, a bulging disc and degenerative disc disease showing in 2 of my discs in lower back. Xray showed ‘mild degeneration’. I also had MRI of my hips and that showed bursitis in both hips, a bit worse in right hip. Apparently no arthritis on scans.
      I have seen an orthopaedic surgeon for my back and hip issues but he really couldn’t help much other than to say there was nothing really wrong surgically so he referred me to physio. He said the annular tear was not the reason for pain as it was old as there was scar tissue around it. But physio and osteo treat me carefully in case it is the tear causing the issue.
      Also, now my toe and ankle (top of foot area, not really around the side-bony part of my ankle) are really sore on a regular basis.
      Anyway, I am very confused, worried, in pain.
      Do I sound like someone with RA?? Do my test results point to RA? Do you think because my anti-CPP and RF results are negative I will just be told I dont have RA and sent on my way? I am a bit worried that I’ll be sent on my way to keep living in pain at my next appointment, because my results are not definitive.
      Thanks for your time.

    18. Jennifer says:

      I dont know whether to believe i have RA or not… About 10 years ago, i had Parvovirus b19, which created severe arthritis for 3 months, then left. That was confirmed by a blood test. Last year, i thought i had contracted it again (again in a classroom of young kids) but the Dr said the bood test showed it looked like the old virus, not a new exposure. I had less severe but widespread athritis and major fatigue for months again which then began to fade and flare. rheumatoid factor was a low positive. All this time I have been waiting to get in to the rheumatologist, and i finally go nxt month. Thing is, my symptoms have mostly disappeared again. I have had almost no joint issues for a couple months, so i have to wonder if it was the Parvo all along or something else? Also, last month or so, i have had Shingles (sheesh!) could the fact that my body has been battling that have caused the RA to calm down? As in, ‘one at a time, form a line please.’ ??? I dont know what to think. Part of me doesnt even want to go to the Rheum anymore while my symptoms of not flaring/ gone. What will i tell him? My insurance is not great anymore, so i am picturing a very pricey, futile trip, if not in a flare. What do you think? Does having that low positive RF factor mean i definitely have RA? Thanks for all your help.

      • hi Jennifer. No a low positive RF does not mean that. There are people with an RF who don’t have RA/RD. I think parvo & other things can result in a pos RF. It is not the most specific test. The anti-ccp test is more specific so that might be what I’d want next. If your coverage is not good for the rheum dr, maybe while you don’t have symptoms now, you could at least get your general dr / gp to run that blood test.
        2 things to think about – patterns of RD can be unique. I had flares for decades but was totally normal in between. Then it became full blown & unrelenting in all joints. HOWEVER, research shows *early* treatment is the best shot for remission – which for you could mean now – if you have it. I hope that helps some. Best to you.
        Some articles that might help: http://rawarrior.com/tag/rheumatoid-arthritis-test/

    19. Melissa says:

      Hi! I am having a similar issue! My dad has RA and I have had joint pain for many years. It seems to be getting much worse. All of my blood work is normal and I’ve been to three Rheumatologists. They all just say “oh its fibromyalgia” or the latest, which is “some sort of auto inflammatory disease” (which I don’t believe because they all list fever and rash as symptoms and I don’t have either)! I have been aching and having lots of fatigue since my mid twenties. It’s much worse now. My hands/fingers are red and swollen in the mornings, my hips hurt so bad I have to toss and turn all night long from the pain, my knees and feet hurt often, and my shoulders hurt as well! Some days I can barely walk up my stairs or even from the bed to the couch! I’m always in pain and sometimes it’s worse than others! I’ve been living on NSAIDS for years! Right now, I take 400mg of Celebrex per day and it helps a little, but doesn’t take the pain away! When I take a steroid pack, I feel great for a week or two, then it’s back to square one! I have no idea what to do!!!

    20. Mollie says:

      I stared having a great deal of weird symptoms and I was sent to a neurologist. I had back surgery 7 years ago and it fixed my problem but that aside I am having significant bilateral knee and elbow joint pain also they are swollen. The flare always hits my knees and elbows at the same time. My neurologist sent me for an MRI trying to rule out MS, Lupus, etc… I get a phone call saying my MRI of my head and neck are normal so no need for a followup. So how do you like that impeccable customer service!?! Results over a phone and dismissed. Ridiculous! I went to my family doctor today and I am awaiting blood work results. The 2 rheumatoid docs here are booked a year out and I’m miserable. I cannot believe how easily Healthcare professionals just dismiss you! I think they think everyone is just pain medication seeking these days! I don’t want any meds. I just want answers! I know something is wrong. I also have a family history, my dad’s twin brother and my paternal grandmother have RA. I hope to know something soon! Prayers please!

    21. Mollie says:

      I started having a great deal of weird symptoms and I was sent to a neurologist. I had back surgery 7 years ago and it fixed my problem but that aside. Every doc wants to contribute everything to my back.I am having significant bilateral knee and elbow joint pain also they are swollen. The flare always hits my knees and elbows at the same time. My neurologist sent me for an MRI trying to rule out MS, Lupus, etc… I get a phone call saying my MRI of my head and neck are normal so no need for a followup. So how do you like that impeccable customer service!?! Results over a phone and dismissed. Ridiculous! I went to my family doctor today and I am awaiting blood work results. The 2 rheumatoid docs here are booked a year out and I’m miserable. I cannot believe how easily Healthcare professionals just dismiss you! I think they think everyone is just pain medication seeking these days! I don’t want any meds. I just want answers! I know something is wrong. I also have a family history, my dad’s twin brother and my paternal grandmother have RA. I hope to know something soon! Prayers please!

    22. Robin says:

      I have had fibromyglia and was told that when I was having a really bad spell that I also had ra and the two were bouncing off each other causing all the pain and bad spasms. I first lose both hands to carpal tunnel, then my butt muscles siezed, and first my right tendon achillie had been operated on for nodules and I I just had my left tendon achillies operated on for the same thing and the nodules are return on my right under the old incisened. I have arthritis in my left hip and a slight tear in my right rotator cuff which has now given my tennis elbow. On a regular day I am always in pain may it be my hands or just tenderness doctors can’t touch me without setting off my spasms. Does this sound like RA and Fibromyglia. Let me know Thanks Robin

    23. Erin says:

      Would love to hear opinions? RNP 6.7, CCP >250, CRP 25.2. Big toe feels jammed, both ankles swell periodically and ache, severe weakness in knees with creaking and popping that can be heard a mile away, cervical erosion in neck confirmed by x-ray, swollen knuckles, and stiff fingers. Dry Skin, Dry eyes, hair loss, Hashimotos disease with antibodies up to 1000, fevers, and the one symptom that is the worst and hardest to deal with is the fatigue. I’m depressed, aching, and just feel unwell in general. The strain is evident on my face, as I hardly recognize myself anymore. Doctors have been blaming my thyroid for 3 years, but the fatigue and the weakness/pain in my knees has finally made them look further in which they did the RA profile, and looked at Lupus. I have an appt on June 2 with specialist. Irregular liver function test, and borderline diabetic. I am not overweight. My primary care med file is littered with scripts for steroids for back, neck, wrist, swelling and pain which I thought was just getting old, and minor from doing gymnastics when I was younger. I’m 47 years old now. Does RA make you feel like you must have cancer or something? I can not imagine living this way for the rest of my life? I just started on plaquenil. I’m also taking tramadol as needed. Doctor would not confirm anything specific, yet but he stressed starting the meds immediately. What would be the chances that this is maybe bone cancer? Really having a hard time keeping all the negative thoughts out of my head. Does this sound normal for RA?

    24. Christina says:

      I am waiting on the rheumatologist consult (8 month wait where I am but I will hopefully hear from them this month). Pain started in my ankles, equally painful in the morning and late at night, a year ago. At first I thought I was working out too hard in the evenings but it then became every single morning lasting for less than half an hour. It’s progressed now to aches in ankles, feet, hands, wrists, elbows, shoulders and hips on a bad day. Extreme fatigue and some days I can barely move, the aching will sometimes only hit morning (lasting 30+ mins) and night and some days for the entire day. The pain, stiffness and fatigue are my only symptoms so far, I have no swelling which I know isn’t ‘typical’. It’s a struggle, not knowing exactly what is going on, especially as a mom to 3 boys under 6 who I’m trying to keep up with. I hope to know soon but as RA seems to be the most likely I am doing my research now. Thanks for this great resource!

    25. John Mason says:

      Doctor said i have ra i started showing symptoms in my hands at age 40. im male now 47 but have no nodules. Just tweaked fingers and a death grip in morning witb redness and swelling. Fingers lock and hurt. Im waiting for test results now but the 1st tests where negative. I was told before i couldnt have ra but even the general practitioner said i have ig when looked at my hands. I dont know what to think

    26. Pamela Drake says:

      In 2013 I had gastric bypass and successfully lost 150 lbs and have kept it off. My symptoms seemed to begin shortly afterward, and have been increasing over time. My rheumatologist said that there is an arthritis that results in some patients. Have you ever heard of this? When I asked him if it was RA he didn’t say yes or no, he just called it “rheumatism”…whatever that means. The pain (pretty much all over but especially the neck/shoulders/arms/hands) is extreme, as it “jumps” from one area to another and another. I’m feeling like my doctors think I’m a hypochondriac! This pain is real, and it has taken it’s toll on my mind over the past 1 to 2 years. I have been on methotrexate oral, which was switched to injectible (.25ml/mg – which he says is the highest dose he will give) about a year ago. It’s as if the methotrexate helps for a couple of weeks, then drops off. Over the past year my dosage has been doubled at each monthly visit. The doctor added prednisone with the MEX injections a few months ago. I hated how I felt while taking it (felt like I could chew a nail in half, shakey inside and out, extremely irratible, etc), but it did help ease the pain. I took that for a couple of months, and weened myself off. About 2 weeks ago he prescribed Celebrex along with the MEX, which seems to be helping pretty well, so far. We’ll see if that drops off as well. I also have osteoporosis which is advancing yearly, so I’m in a bit of a jamb. If I begin to fall, I can’t rely on my upper body to stop the fall! And now, with the slippery weather, it’s really scary!!

    27. Pamela Drake says:

      Update:
      After just about a week of the Celebrex + MTX, it is no longer enough. Problem is that when I asked my Rheumatologist for something for the horrible pain, he said that it was the responsibility of my GP to prescribe at her discretion, and she is trying to rely on him, since he is the expert on this, so I get stuck in the middle having to pretty much figure it out for myself! That, along with all of the other frustrations, makes me so very grateful that I have a psych person, and I see her tomorrow early morn.

    28. Angie says:

      I am so glad that I found this site. Thank you for all your hard work!! I have been having multiple issues with joint pain, fatigue etc. I have had 1 apt with a Rheumy all my test were normal except a slightly elevated ESR and CRP. She said that this is to be expected of someone of my height and weight. Uhm excuse me?! I understand that I am by no means super fit or thin but I wouldn’t think there should be inflammation running rampant in my body just because of that. Of course RF, ANA, Anti CCP, and HLA-B27 were all negative or within normal limits. Perhaps I should mention I have a long family history of autoimmune disorders. My dad has MS, my sister has Crones, I have an aunt with psoriatic arthritis and my daughter was just diagnosed with Alopecia Areata.

      My pain started mainly in my right ankle and right knee (I have previously injured this knee though). This pain had lasted several months. The pain began to spread to other joints and the fatigue became overwhelming. Granted I had a child under 1 years of age but she was a really good sleeper. The fatigue hit me out of nowhere and there were days that I could hardly make it to 8pm without falling asleep on the couch.

      After my first failed attempt with the Rheumy I kind of gave up and decided that I would just deal with the pain and go about my life. Sadly the pain has shifted joints and at times cause things to be very difficult to do. My PCP has put me on Cymbalta and Mobic to help with pain. That works for a majority of my joints but my right (dominant) elbow hurts all the time. The PA at my PCP’s office gave me a Medrol dose pack to see if it would help and I hadn’t felt that good in a very long time. Sadly the pain started to return about the time I finished the pack.

      Finally have an appointment scheduled with a new Rheumy next month. It’s not that I want to have RA but I would like some answers as to what is going on. My symptoms have only increased. Here’s a list of what I am dealing with now:

      Fatigue
      Stiffness in morning
      –on bad days will last most of the morning
      –stiffness after periods of inactivity
      Multiple joint pain
      –right elbow all the time
      –grip weakness
      –pain in hands and fingers
      –hand shaking when picking up items
      –pain in arm above and below right elbow
      Right side jaw pain and popping
      Burning sensation on skin (like rug burn)
      –started on elbows now randomly all over body
      –can feel this burning on elbows more with movement
      Pinpoint pain/electric shocks
      Itching
      Dyshidrotic eczema
      JOINT PAIN SEEMS WORKS WEEK BEFORE MENSTRATION
      Difficulty sleeping–at times due to pain mostly in right elbow
      Neck and back pain and stiffness
      Sweating/hot flashes
      Left thumb tremor
      Palpitations (normal-per Cardiologist)
      All my joints pop all the time and joints feel better after popping
      Brain fog–difficulty concentrating at times
      Elevated ESR and CRP
      –had ESR of 89 one day 3 days later it was 36
      I commute about 30-45mins for work and its to the point that my wrists hurt about halfway home from holding the steering wheel.

      I work at a medical clinic, as a phlebotomist/lab assistant and I regularly talk with the ARNP here. She’s pretty much convinced that I have seronegative RA. I really hope this next Rheumy is willing to listen and consider seronegative RA. If this is the case I want to start tx asap to prevent further damage.

      Thanks for listening,

      Angie

      P.S. Sorry for the novel!!! Guess I had more to get off my chest than I thought!!!

      • Hey Angie. I’m sorry for everything you’re going through. I hope the new rheum doc is better. It’s worth repeating antibody labs after a few months- they are often negative in early RA & trend toward positive over time.
        I wish I could help you know for sure. Another lab test you might ask about that measures a number of proteins in RA is the Vectra test.
        Here’s a link to more diagnosis infothat might be helpful.
        http://rawarrior.com/tag/rheumatoid-arthritis-diagnosis/

    The Post

    Comments (110)


    What do you think?


    Would You Like Free Email Updates?
    Stay in touch with RA Warrior.
    We respect your privacy. Your email address will never be shared.