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...
I am a mid-forties mother to three grown (and awesome!) children.
For several years, almost 2 decades, I kept going to doctors because of pain and fatigue plus some neurological problems. Most of the doctors would run the standard tests/labwork and tell me they couldn't find anything wrong... but then proceed to tell me to lose weight and/or see a therapist. Frequently I would leave with an antidepressant prescription.
Within the past decade some took me a little more seriously and referred me to neurologists because it seemed like I had some symptoms of multiple sclerosis. Other than a brain MRI showing 14 lesions, there is no other proof they can diagnose me with.
Then a couple of years ago I was sent to a rheumatologist who said I appeared to have all the symptoms of Fibromyalgia but I didn't have the diagnostic "tender points".
A couple months ago I was referred to another rheum. and this one put me on a trial of steroids as a way to find out if it was truly fibro... or if it was an inflammatory condition. My bloodwork was normal (as usual).
Well... Oh my goodness! I felt so different on them and almost remembered what it's probably like to feel normal.
So it looks like sero-negative RA. Autoimmune diseases run in my family including Lupus and RA so this is not surprising.
I just wish I could have found out years ago when the symptoms first started in my fingers, toes and knees. Because the last 2-3 years got a lot worse and now it's my hips, spine, neck, shoulders, etc... pretty much everywhere.
The hips, back and shoulders are the most recently affected and now I have a very hard time going down stairs especially without shoes.
My hips and upper back hurt so much that turning over in bed at night can be agonizing (and of course when I get up everything is stiff including my feet, so it takes a few hours before I loosen up).
5 years ago I started doing judo/jujitsu. I progressed slowly but still persisted, and I couldn't figure out why I was in SO much pain after classes the next day. The other students kept telling me I'd get used to it but I never did.
Within 2 years (3 years ago) I had to finally stop. And I gradually stopped pretty much all of my other activities except for walking. I couldn't even get a sports bra on and off at that point!
The last year - year and a half has been the worst pain of my life. :-(
It got to the point where even walking (which my doctors kept telling me to do to "lose weight") was excruciating at times. I've been hobbling around like an old lady while hearing doctors scold me for my weight gain (which I put on the past 2 years of inactivity).
Finally, I have found out that I really do have an illness and this hasn't just been due to "depression" or weight gain (which might partly be from the antidepressants they kept insisting on prescribing!).
I know this is a long post. And some of the issues I'll probably address in separate threads so that people can respond to individual things they can relate to.
Thank you for listening! It's been lonely losing my active friends.
For several years, almost 2 decades, I kept going to doctors because of pain and fatigue plus some neurological problems. Most of the doctors would run the standard tests/labwork and tell me they couldn't find anything wrong... but then proceed to tell me to lose weight and/or see a therapist. Frequently I would leave with an antidepressant prescription.
Within the past decade some took me a little more seriously and referred me to neurologists because it seemed like I had some symptoms of multiple sclerosis. Other than a brain MRI showing 14 lesions, there is no other proof they can diagnose me with.
Then a couple of years ago I was sent to a rheumatologist who said I appeared to have all the symptoms of Fibromyalgia but I didn't have the diagnostic "tender points".
A couple months ago I was referred to another rheum. and this one put me on a trial of steroids as a way to find out if it was truly fibro... or if it was an inflammatory condition. My bloodwork was normal (as usual).
Well... Oh my goodness! I felt so different on them and almost remembered what it's probably like to feel normal.
So it looks like sero-negative RA. Autoimmune diseases run in my family including Lupus and RA so this is not surprising.
I just wish I could have found out years ago when the symptoms first started in my fingers, toes and knees. Because the last 2-3 years got a lot worse and now it's my hips, spine, neck, shoulders, etc... pretty much everywhere.
The hips, back and shoulders are the most recently affected and now I have a very hard time going down stairs especially without shoes.
My hips and upper back hurt so much that turning over in bed at night can be agonizing (and of course when I get up everything is stiff including my feet, so it takes a few hours before I loosen up).
5 years ago I started doing judo/jujitsu. I progressed slowly but still persisted, and I couldn't figure out why I was in SO much pain after classes the next day. The other students kept telling me I'd get used to it but I never did.
Within 2 years (3 years ago) I had to finally stop. And I gradually stopped pretty much all of my other activities except for walking. I couldn't even get a sports bra on and off at that point!
The last year - year and a half has been the worst pain of my life. :-(
It got to the point where even walking (which my doctors kept telling me to do to "lose weight") was excruciating at times. I've been hobbling around like an old lady while hearing doctors scold me for my weight gain (which I put on the past 2 years of inactivity).
Finally, I have found out that I really do have an illness and this hasn't just been due to "depression" or weight gain (which might partly be from the antidepressants they kept insisting on prescribing!).
I know this is a long post. And some of the issues I'll probably address in separate threads so that people can respond to individual things they can relate to.
Thank you for listening! It's been lonely losing my active friends.
Glad you finally found a Rheumatologist, especially one that treats seronegative people. I hope you find the right combination of meds to take without having to stay on the steroids toooooo long. The steroids do work miracles but unfortunately can cause problems of their own long term.
Leah
I think mine is now affecting my shoulders, as they are both pretty painful. That prednisone is a life-saver, isn't it? I'm also on methotrexate, which I can tell is now helping me.
I wish you all the best! This is a great site for support, advice, and encouragement.
I'm glad the latest Rheumatologist is listening to you and will be starting a treatment plan with you. I hope you find your magic "cocktail" of meds sooner than later. It can, however, be a real roller coaster ride of trial and error.
Gentle hugs
I am so sorry you had to suffer so long without answers.
Been there done that with another chronic pain problem.
For some reason depression is the diagnosis when doctors can't find the cause. Especially with women (no offense gentlemen).
It's the hardest thing to deal with when you know there's something very wrong & no one has an answer or believes you. If you don't start out depressed the doctors sure help you get there. I call it DID (doctor induced depression).
I think you'll find others who completely understand your journey to finding a diagnosis. You'll find understanding is in abundance here.
Hope you find yourself at home here.
Blessings,
Sammy
I am almost in tears right now and short on words at the moment (but will find more later lol), and am just very grateful.
This means a lot to me to have some people who can relate, although I wish none of us had to deal with it.
And Kimberly - you are right. This world is still full of beautiful things.
I guess the challenge is finding the balance between focusing on the good stuff, yet still allowing ourselves to vent about the difficulties.