Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
Over the last 5 years or so I've had an ever increasing number of RA symptoms and they continue to get worse. During Christmas when I was extremely stressed and busy I couldn't use my hands at all because to try and even lift a shirt was too painful for my knuckles and hands. The joints beneath my index finger are beginning to look deformed and I have a large growth on the side of my foot under my big toe that often hurts. All of my Autoimmune tests come back as positive with inflammation. I also have a condition called Pseudotumor Cerebri, a known secondary condition to RA for which I underwent brain surgery 5 years ago. I saw a rheumatologist a couple of years ago who said I definitely have an auutoimmune process going on, but wasn't sure if it was lupus or RA. My mother has MS and my maternal Aunt had severe RA. I was supposed to follow up, but haven't. With the increase of symptoms, pain and a current flare, I can't put this off any longer. What I would like to know, however, is how did you know you had RA? What were your initial symptoms? What is your story? Thank you.
My story started last spring after I had a procedure on my back that had me feeling well enough to try to start exercising. A couple of weeks later I was in so much pain they thought is was Achilles tendonitis so I did a lot of PT for that except it was bilateral so that made it tough. I wasnt responding and the PT supervisor said she thought it was a joint issue. Then it happened in the hips, wrists, neck, etc. A lot of pain, swelling, tenderness. We couldnt keep up with all of the areas that the ortho dr thought I needed PT on and steroid injections. I had a couple E.R. visits with severe pain and they said it looked like RA just by the exams and scans. They sent the tests to my PCP since my ortho dr said Fibromyalgia, not RA. The PCP did a slew of labs and it all came back pointing to RA. She put me on Prednisone til I could get in with Rheumie (3 months). Rheumie needed to be sure so she ran her slew of tests all came back RA and Fibromyalgia. Started MTX in November but had so many serious side effects I had to stop last week now were waiting on blood work results to see if I can proceed to next step. So on pain meds, Prednisone, etc.
I was taking medication for Hypothyroidism so I started with that. My ob/gyn was the one prescribing the med. My sister worked for an Endocrinologist and thought I should see him...so I did. He changed me from Levothyroxine to name brand Synthroid and it made a difference. I wasn't as "tired" in the mornings. I was still having issues with fatigue, heat intolerance, joint/bone/muscle pain, losing words - mixing up words - couldn't think straight....my endo felt something else was going on.
I decided my next step was to find a Rheumatologist. I typed a list of symptoms, in chronological order and faxed to his office. He thought he could help with some of my symptoms and set me up with an appt. After blood work, my diagnosis was RA. He started me on prenisone, then plaquenil. The combo has really helped. I still have problems, but on a lesser scale. Dr. Rheumy thinks I may still have something else going on. But I want to get this under control and well managed before I proceed to the next level.
I was diagnosed in Nivember of 2013. I am a 43 year old mother of two young boys. I was gardening and list grip strength in hands, was experiencing electrical shock like feeling in feet especially on the toes. Legs hurt but I attributed it to bring overweight. It wasn't until the symmetrical pain moved to elbows and hands that I sought help.
I am on week 11 or 12 (can't remember) of Methotrexate and tapering off Prednisone. I am overwhelmed by this disease as I am tired by 8pm nightly. This support group has been tremendously helpful. I educate myself here in RA by reading older posts and check out another website weekly called RA Warrior. That site had a great RA primer area to really give you the lowdown on the disease in easy to understand language.
I have a strange buffalo hump like mass on my upper back that reacts to the Prednisone. I find humor in it -- it's the only way to survive!
By week 8 of treatment I felt normal again, albeit a new normal. I just want you to know things do get better. There is hope. Lot of meds to try.
Hug to you Monkeymom -- just love that name!!!
Welcome! Sorry you need to be here but glad you have found our nice group.
Mentioned it over lunch to my mother. (She was in her 12th year of advanced RA, and 8th year of full remission). She went through all of my symptoms and basically they matched HER onset pattern. So she dragged me to public health (with her twisted hands and big stack of medical records) , since I didn't have health insurance it was our only option.... Mom demanded blood tests and prescription for Minocin. Poor public health doc just figured since we weren't asking for something we could sell on street - so prescribed it.
Around 3-4 years later, now under my second hubbys insurance, I was xrayed at my GPs office after a bad throw from a horse. The orthopaedist he's partnered with exclaimed "well girl, you lucked out again! And BTW the RA is barely showing, so keep it up!" Then he showed me where in the xrays you could spot just the beginnings of rheumatic bone changes.
I was treated by those same GP and orthopaedist until 2011. Finally went to a rheumy in 2009 after I tried generic Minocin and ended up in a super flare so bad that the rheumy said I was the worst he'd seen yet. Gave me prednisone and tried to pressure me into MTX. But I held firm that as soon as generic Minocin ran out and I could refill with name brand - I'd get back down to very mild status again. And I was proven correct.
Then Jan 1st 2013, I decided I wanted to lose all the prednisone weight (I'd been off it for 4 months at that point, but had gained 50lbs during my time on it). So I entered the workplace biggest loser contest and started the paleo diet.
By Feb, I realized that I was suddenly totally normal!!! No RA at all and no IBS. Mentioned that to new GP (an old grizzled Dr that tells it like it is) during my annual check up in march. His response was that if all his patients cleaned up their diets, 70% of them wouldn't have chronic conditions. So he told me to keep it up and congratulations.
Went to rheumy in Aug 2013. Been almost three years since I'd seen him. He had done a lot more research. Had experienced a lot more patients looking for alternatives like me. He felt diet had a lot to do with flares and congratulated me on the weightloss and getting into remission. He advised me to consider allergy testing and said he hoped he only saw me back for annual checkups.
It has been a long 12 years of discovery about my body.
I wasn't diagnosed until 4 1/2 years ago, but had strange symptoms for 10-11 years prior to that. Strange, because a joint would flare, extreme pain, to the point of being frozen, not usable. Just one joint at a time, and it would only last about 36-48 hours, and then not happen again for several months. Because it wasn't bi-lateral, they just called it inflammatory arthritis. I felt like the doctor didn't really take me seriously, so I just quit going to the doctor about it. I just accepted new aches and pains, and started taking OC pain meds. Finally, I started having my lower legs swell. I bought 8 different pairs of shoes in a few months, trying to find something that I could wear comfortably, since I taught primary school children and was on my feet all day. When they could find nothing to cause the swelling, my doc said that it could be caused by the daily Ibuprophen I was taking. So I stopped. That is when I discovered that everything hurt. Then it was bi-lateral, since both feet, ankles, knees, shoulders, wrists, most fingers, not to mention my neck and at times my jaw were all involved. Since then MTX helped, in fact after a few months I was pain free. That lasted until last spring.
Then I had to reduce my MTX and added Humira. I don't have as good results with this combo, but maybe eventually I will. It seems to always be a work in progress, as we tweek the treatment trying to find the best way to go.
We all seem to be different, in the way this disease presents, and how we respond to treatment. You just need to find a good rheumy and start working to find the treatment that works for you. I wish you luck and hope you feel better soon.
After about 5 months of these symptoms I went to the rheumatologist who happens to also be my PCP. RA was on my radar because my mom has it. But I thought that the symptoms were pretty atypical so I was hoping the tests would be negative. But they weren't. I had a positive RF, anti-ccp, and elevated sed rate. The rheumatologist was a little surprised too at the presentation.
If you show no positives to foods in the test, chances are diet has no effect on your case.
Good luck and keep us posted!