Rheumatoid Arthritis

Hi everyone...I am 28, wife of 7 years and mom to 2 children (ages 4 and 8 mos). I am currently still breastfeeding my 8 mo old and in Sept I woke up one morning unable to bend my fingers to make a fist. I assumed I had just slept on my hands wrong, only to find the same thing happen the next morning and every morning after that. My hands are completely stiff in the mornings and even after I wake from a nap. It hurts so bad to even attempt to move or bend my fingers (even brushing my teeth has become a challenge). They loosen up after 45 minutes or so of being up and awake, and then remain "sore" throughout the rest of the day - even sore to touch my nuckles.

Just yesterday I had my first appointment with my primary care doc and they did bloodwork and I am now awaiting the results. I will find out the results next week. My grandma's sister has RA and got it in her late 20's - so this caused me some concern and I realized maybe these symptms weren't just a phase.
Also, I have been so so tired lately, needing a nap at least once a day and I even exercise regularly 3 days a week so I should have MORE energy??
Anyway, these are my symptoms in a nutshell and I am SO SO interested in knowing how other people's RA began since I am very new to all of this. Emotionally I am pretty messed up just thinking of how much all this can affect my life...I have too many diapers to change and other important responsibilities to be stopped by this pain. My husband and I want at least 2 more children and it crushes me to think this may also be affected...please share your story with me - it will be a good medicine to me at this point!

Thanks so much

Tara G

Hi! I am new to posting on any website so bear with me. I am a 40 year old mother of 3 and have been on disability for the past 6 years due to rheumatoid arthritis. When I was 29 I woke up one morning and was having extreme shoulder pain. Luckily, I was an RN and also working in a doctors office so I had every test ran possible and of course, everything came back negative for rheumatoid or anything else for that matter. Within the next 2 weeks, I started having pain in both shoulders and it was difficult to lift my arms or reach for anything. Then I started noticing that my hands were hurting and were swollen. I was having problems writing in patients charts. Also during the second week of symptoms the joint pain was basically all over my body. Both feet and ankles were swollen, knees, etc.. Unfortunately, it took 5 years before I was diagnosed with rheumatoid and had a positive rheumatoid factor. It wasn't until then that I was actually taken seriously about my physical complaints. Now I no longer can work as a registered nurse and am on social security disability. I have tried just about every medication out there including enbrel, humira, remicade, etc.. and they only work for a few months and then quit. I have been taking prednisone now for 10 years straight with high doses at times and the only advice I can really give you is try to avoid the prednisone treadmill. I wish that I had been more careful with it when I was younger because now that I am 40, I am seeing the long term side effects. But hey, there could always be worse things to live with and I can say that my rheumatoid has gotten "easier" to deal with over the years. Hope this helps! Hang in there and read everything you can on treatment options! Shannon J.

I am newly diagnosed with RA as of 12/29/06. My symptoms started about 7 months ago. I first noticed being severely fatigued daily where I had to fight urges to take a nap. This same time I began to get sick all of the time haveing a chronic cold and a strep infection (4) times in 7 month period. I also was experiencing waking up during the night with heart palpatations and being severly out of breath. At the same time I began to wake up with extreme pain, swelling and stiffness in the finger and wrist joints of both hands. My left hand/wrist is worse than my right. I visited my GP (7) months ago regarding my pain and fatigue and he said that he suspected CTS (Carpal Tunnel Syndrome). He sent me for a EMG/NCV study which came back positive for bi-lateral CTS but the Neuro stated that the tests showed very, very mild to zero CTS and that I shouldn't be experiencing any pain at this very mild level of CTS. The neurologist gave me a workup and stated that my complaints and symptoms were very conducive to what he had seen in patients with early "RA". I then went back to my GP who ran a standard blood test for RA along with a complete metabolic profile, liver enzymes, diabetes, etc.,. The tests came back negative for RA and all other blood work looked good, even though my GP agreed that my symptoms did sound like RA. She then stated that since the blood work was negative for RA that it was "highly unlikely that I had RA". Not being satisfied with that answer I asked for a referral to one of the best Rheumatologists in the area. After an extensive physical exam by my Rheumy he diagnosed me with "Sero-negative RA". He said that it was in the early stages but said that he wanted to begin me on meds. He started me on 400 mg Plaquenil per day. I'm patiently waiting to see if the Plaquenil is going to help me as the Rheumy told me that it takes 8 - 12 weeks to start working.

Hi Tara,
Your story sounds a lot like mine. I am an RN and developed the first symptoms when I was pregnant with my 3rd child at age 33. My shoulders were the first joint that hurt a lot so I thought (and my MD too) that I had an impingement in the shoulder joints. 6 weeks after I delivered I went to my primary care doctor with complaints of extreme fatigue (napping in the day like you), having joint pains that jumped from joint to joint. One day it would be a knee, the next my hands, then an ankle and so on. He just said I had a reason to be tired, I was working full-time with 3 young kids and of course I would be tired! oh, also my muscles ached like I had the flu and I could not even open a baby food jar because my hands hurt and were stiff. I insisted something was wrong so he did a panel of blood tests and my RA factor was sky high, he sent me to a rheumatologist. I was FREAKED, thinking I would be a cripple in my 30's.

Not true, I am 50 and have done great. I was started on one pill at first and the symptoms were under control (btw I NEVER had joint swelling or redness, RA can be different than the usual symptoms). A few years later when symptoms started back up we made the one med I was on into twice a day. It seems like every 4 years or so I start to flare-up and have to add a med. So after I started to flare again they added Methotrexate plus the first med I was on (Plaquenil). That controlled the pain for years and years. I did everything I wanted. Worked full-time, had energy, went to all of my 3 kids games etc.. and worked out 10 hours a week. Just this last year at age 50 I started having very frequent flare-ups, for the first time my joints were red/hot and very swollen. Mostly in my right wrist. I had Enbrel (the shot) added and I have had NO flare-ups since Enbrel. So, I am 50 (just retired after 30 years of nursing), I take 4 meds for my RA (Folic acid prescription strength is the 4th) and I am doing well. MY yearly hand X-rays show no joint degeneration. I had shoulder surgery in April but the doc said it was mostly damage from wear and tear not RA.

So, guess what I am saying is IF you have RA read all you can. I get Arthritis Today magazine and it has current info. It is not a "sentence" to have joint damage with the new meds out there. If I can live 17 years with no joint changes and right now no pain, no problem with energy etc.. then there is hope. I think you have to be on top of it and get treatment early. I am lucky in that if I have a flare-up my doc sees me THAT day on his lunch break and gets it under control.

just see what the results are first, be postive, be educated, k? Pat

I'm a 27 year old female who was recently diagnosed with RA. My story sounds a lot like the other posts. My symptoms started over the summer. One day, out of the blue, I was in excrutiating pain and could not move my shoulder. Then it went away. Over the past few months I've been having pains in different parts of my body. Everyday was different. It would jump from the shoulder, to the wrist, then the finger, my knees would hurt, my feet would swell, etc. I had come up with reasons why I thought they were hurting me. I thought maybe I slept on them wrong, maybe I'm standing on my feet too long at work, etc. I also noticed that I was always tired, eventhough I would take a nap sometimes, I was exhausted. I also saw that I was always catching a cold. I am an elementary Spanish teacher so I thought that I was just building up my immunity.
Over Christmas break, I could not move my right hand. Then a hot spot appeared on my wrist, it was swollen and painful. The following day I went for bloodwork. When the results came back my RA factor was sky-high and I was sent to a rheumatologist.
Now, I'm in the process of finding out as much as I can about RA and the medications. There are a lot of wonderful people here who are willing to answer your questions and talk about whatever is on your mind.

Best of luck to you!

Janeenmaria

quote:

Originally posted by Ta2d:
She then stated that since the blood work was negative for RA that it was "highly unlikely that I had RA". Not being satisfied with that answer I asked for a referral to one of the best Rheumatologists in the area. After an extensive physical exam by my Rheumy he diagnosed me with "Sero-negative RA". He said that it was in the early stages

Is that a real thing? Where you can have RA but never have the RA factor in your blood work? I have had probably 3-4 tests so far and have been told I do not have RA yet expierence all the symptoms and have a family history of it.

I just had another round of blood work done - when I get the results this time if its negative again Im gonna try asking for a referal as well..maybe that is what it is!

Hi Gaylah,

Yes, sero-negative RA is real. You do not have to have a positive rheumatoid factor to be diagnosed with RA. A large number of people don't. From what I've been reading though, people with a positive RA factor are more likely to have more aggressive RA a fewer periods of remission. I've had RA for most of my life with stiffness, swelling, joint damage and deformity, etc, but I don't have a positive RA factor and I've never had an elevated SED rate. RA and all autoimmune disorders for that matter are truly strange things, aren't they?

Christine

Hi, I too am newly diagnosed. Like so many people who responded to this post, my symptoms also started in my shoulders (one more than the other). In fact, the MRI showed that there was swelling in the shoulder that had weakened a tendon and it has torn (OUCH). I am having a hard time recovering. My bloodwork was all totally normal, but my rheumatologist is pretty aggressive - due in part to the positive outcomes for early treatment. She has put me on 400mg of hydroxycholoroquine (so far no terrible side effects). My goal, after lots of depressing internet searches, is to remain positive, to see the value in having an early diagnosis and to feel thankful it isn't something worse (I guess). Also, I just read an incomprehensible article in a medical journal (Arthritis and Rheumatology) about t cell vaccinations showing promise for us!!! We are at the center of lots of research. Good luck with everything.

I actually do not know yet if I have RA. I am still going through some testing. I did come back positive for rheumitoid, so they are doing more blood work to find out if it is RA or possibly Lupus. Can anyone give me any feedback on this? I started having the pain in my fingers about 5 weeks ago, and I just figured i slept wrong, but it slowly moved into my wrists and then my knees. I had been going to my Doctor for extreme fatigue, and he basically told me I was probably stressed out and to take it easy, but I am only 26, I shouldn't have to sleep 9 hours+, plus a nap at my age, I am even afalling asleep when I drive or in the middle of work. The fatigue was bad enough, but the pain is not fun at all. My doctor gave me some naproxen for the pain, but nothing seems to work. The morning and the evening are the worst by far, the rest of the day it is still there, but If I can stay busy enough I can usually deal with it, but the pain is always there. I went to the emergency room last Monday morning b/c the entire top part of my body hurt so badly! My doctors have NOT been helpful, and they treat me like I am making this up, they make me feel like I am a crazy drama queen, I even catch myself questioning myself at times wondering if the pain is really there...Unfortunatly it is! Can anyone give me some peace of mind? My email is palomastephens@yahoo.com, I just feel like no one understands what I am going through right now!

my name is natasha i was 15 when my rumatoid athritis was diagnosed it started in summer when i wes walking my friend home i had a pain in my hips and the next morning it went to my rist and from there everywhere within a week i could hardly move with pain !!

I'm so happy I found this discussion! I'm kind of in a different situation than most of you in that I have not yet been diagnosed. I have several autoimmune diseases and in the process of getting a workup for a problem with mouth sores and possible Sjogren's syndrome, I saw a rheumatologist who ran some bloodwork. Came back positive for rheumatoid factor and CCP antibody which is apparently a newer test that is very specific for rheumatoid arthritis. The rheumatologist said she's never seen anyone with both of those tests positive that didn't have RA and that I'm very "interesting." At this time I have definite fatigue, some minor shoulder pain that didn't impress the rheumatologist, and I'm obsessively paying attention to every twinge of discomfort in any joint so I don't know if I'm having joint pain or just being hyperaware of my joints. Certainly not having the stiffness most of you describe. But I thought it was interesting that so many of you said it started with shoulder pain and fatigue. Perhaps I'm doomed to eventually develop more symptoms, but it's encouraging that so many seem to have found satisfactory treatment. By the way, 2 biopsies later, they still don't know what's wrong with my mouth, but they are treating it as lichen planus and the treatment helps.

Hi, im a 40yr old single mum to a gorgeous very active 3yr old little girl. In may 2006 the balls of my feet were swollen and very painful. That pain spread to the back of my ankles. A few weeks later that pain went away and my left wrist was sore, like a sprain, so thinking i just sprained it i just strapped it. When that pain got worse i went to doc who said 'carpel tunnel sydrome'. It wasnt until my right wrists gor sore too and using my hands become very painful and difficult i went back to another doctor who did some test, bloods etc, and diagosed RA. By that time my feet, ankles, wrists and shoulders were sore. He referred me to a specialist and in the meantime every 2 weeks i was back to the docs 'latest anti-inflamatry drug not working' . Between July and November, when i finally saw the specialist, i had tried about 10 different types of anti-inflamatrys. By the time i saw the specialists my whole body was inflammed, feet, ankles, knees (which were the size of my thighs) groin, back, shoulders, neck, hands, wrists, elbows and yes even my face. Within 6 months every joint in my body was inflammed. Within a week of taking the prescribed medication from the specialist the majority of my symptons had been greatly reduced. I was so very happy, painfree and i could live again YAY!! But a month ago the pain has come back, ankles and wrists and lately my big toe. The last 3 days my shoulder and neck. In 4 weeks i have gone from so very happy getting on with life (was starting a career course) and enjoying my daughter to living with constant pain everyday again. Come on all you doctors and specialist hurry up and find a better course of medication or better yet a cure, now that would be good. Until then i just have to keep smiling and getting on with life the very best i can (i'm keeping the pharmacist in business) my top cupboard is full of a variety of medication. I'm nearly and expert! To all the RA sufferes out there, keep smiling chin up and remember your not alone. If not for my daughter i would happily curl up and die but looking at her beautiful lil face, her smile, her cuddles and when she says 'love you mummy' thats what keeps me going everyday, i gotta survive this for Dyon, my precious. Hopefully you all can find a safety line too. Keep smiling.

This topic is very interesting to me. I am a 44 year old female and have always been into hiking, running, etc. In June of 2006 I started having some strong pain in my right shoulder. I had been active with tennis and other activites immediatly before this and thought it was an injury of some sort. Shortly after I had aches all over (knees, elbows, hips, shoulders) and what felt like a flu without the stomach troubles. This lasted maybe 2 weeks. The right shoulder, however, continued to hurt, sometimes to where I couldn't lift my arm. Every couple months or so, I continue to go through these all-over aches, where many of my joints are painful. Sometimes my knees or shoulders will also feel 'hot'. I finally went to an orthopedist in Jan of 2007. He ran tests for Lupus, Lyme, and RA, and said all were negative. And that I was 'just wearing out'.
I've had xrays (knees and shoulder) and an MRI (on the right shoulder). They show 'significant degenerative changes' in the shoulders - end of collar bone. And the knees look fine. I've had three cortison injections into right shoulder; one of which gave me relief for about 2 months then the pain returned.
The next step is surgery to remove the end of the collarbone on the right side. I'm still having times when my knees and/or hips, elbows, are quite painful and feel warm, sometimes with accompanying overall feeling of low-fever or fluish. I'm wondering if it might still be RA even though the test was negative.
Any thoughts?
thank you,
mel

Somebody please help!!! I am a 25 year old mom of two boys, ive been having pain all over my body. It started in my wrists, they thought it was carpal tunnel, nerve test came back negative then the pain moved to my ancles so i went to a reumatologist. He did blood work for RA and lupis and it came back negative. Im in so much pain everyday with no answers.I sometimes second guess myself, but the pain is still there everytime i wake up.It moves form joint to joint but the pain in my hands are always there. So if anybody has any answers please help.

Hello,
I am 20 yrs old a mother of a 14 month old girl. MAybe 2 or 3 yers ago I started having pains in my kneees. Every 3 to 4months I get pain in 1 or both of my knees. Right now its extremely swollen and its hurts so bad when I have to bend it to either reach down or get into my car. Maybe about a year ago I had pains in my hand but I thought it was due to the fact that my hand was fractured 4 yrs. ago. I am almost always feeling weak. I have never had any concerns with this except when someone told me I should get checked out. I thought nothing of it. Now I am very concerned since google led me to this page and your stories sound familiar. I just always linked the word "arthritis" to 80 yr olds. Has anybody's pain ever started in the knees?