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...
Hi. I don't have an RA dx yet, but I've had chronic pain in my left foot for 17 months. I was finally dxd by MRI with a rare condition (Regional Migratory Osteoporosis - no relation to systemic osteoporosis in that the bones do eventually remineralize) in 3 bones in that foot last May, but my course is not typical. It usually occurs in middle-aged, overweight men or 3rd trimester pregnant women. I'm a 61-year-old woman. It is usually self-limited in (depending on what site you read) anywhere from 3-9 months up to 9 months to 2 years. But I had another MRI last week. The RMO moved out of 2 bones of the 3 bones and into 2 others. It also showed changes that prompted my foot doctor to refer me to a rheumy for consultation for RA.
I had a paternal uncle with severe, crippling RA, the most positive, upbeat person you ever wanted to meet. I also had a maternal aunt with moderate to severe RA who was not always pleasant (I'm being nice here), and could be downright mean. My folks always excused it due to her chronic pain. I always said if I ever had chronic pain, I would never be like that aunt.
But here I am after 17 months of chronic pain. I am typically a very upbeat, positive and happy person (even though I've treated medically for clinical depression since 1992), and I have struggled greatly this winter to maintain that. Last night, when I read about RA online, I broke down and cried and cried. My hubby held me while I was telling him, "I don't WANT RA!"
I think the biggest problem is the commercials for RA meds on TV with all their side effects. My Dad is a lymphoma survivor. I definitely don't want to take an RA med that could cause lymphoma!
I finished a health coaching class last summer and am a board-certified health coach (holistic), but cannot stand long enough to do workshops (which is the primary way to find clients).
I am amazed how many folks on this forum talk about working, because if I so much as walked from a parking lot into a place of work one or two days, I'd be laid up for at least 2 days, barely able to walk at all. My husband has been grocery shopping for the last 3 months because I can't walk through Kroger and carry the groceries in without my foot swelling and getting so painful I have to have it elevated for 2 days. I applied for disability recently (before the 2nd MRI last week).
Sorry to have gone on so long. Perhaps I should have typed this in My Journal... but I feel like a mess and just needed to get it out. Thanks for hearing me.
I had a paternal uncle with severe, crippling RA, the most positive, upbeat person you ever wanted to meet. I also had a maternal aunt with moderate to severe RA who was not always pleasant (I'm being nice here), and could be downright mean. My folks always excused it due to her chronic pain. I always said if I ever had chronic pain, I would never be like that aunt.
But here I am after 17 months of chronic pain. I am typically a very upbeat, positive and happy person (even though I've treated medically for clinical depression since 1992), and I have struggled greatly this winter to maintain that. Last night, when I read about RA online, I broke down and cried and cried. My hubby held me while I was telling him, "I don't WANT RA!"
I think the biggest problem is the commercials for RA meds on TV with all their side effects. My Dad is a lymphoma survivor. I definitely don't want to take an RA med that could cause lymphoma!
I finished a health coaching class last summer and am a board-certified health coach (holistic), but cannot stand long enough to do workshops (which is the primary way to find clients).
I am amazed how many folks on this forum talk about working, because if I so much as walked from a parking lot into a place of work one or two days, I'd be laid up for at least 2 days, barely able to walk at all. My husband has been grocery shopping for the last 3 months because I can't walk through Kroger and carry the groceries in without my foot swelling and getting so painful I have to have it elevated for 2 days. I applied for disability recently (before the 2nd MRI last week).
Sorry to have gone on so long. Perhaps I should have typed this in My Journal... but I feel like a mess and just needed to get it out. Thanks for hearing me.
RA hit my feet first for the first 6 years. I remember crying when I held my disabled parking permit for the first time. I was only 32.
But there is good behind the bad! I wouldn't have gone back to college if it weren't for the RA. I wouldn't be a teacher today. I wouldn't be so close to my mother (advanced RA, remission for 20+ years). And now, 12 years after the first symptoms, I am usually pain free and in remission.
But the experience taught me so much! So much that I wouldn't change a thing in my history.
The great thing is the huge advances in RA meds over the last 10 - 15 years which weren't available for your aunt and uncle.
It sounds as though you have a very supportive husband and this is important.
We don' have commercials for any prescription meds on TV here, thank goodness.
Hope you are able to get a diagnosis soon and start on a treatment plan.
Hugs
i am sorry about the level of your pain and I am happy for you that you are getting good diagnostic care.
i had aunts with RA also, one pleasant, one daft. not sure what personality has to do with chronic disease. I am a big believer that whatever your personality was when young it just solidifies into a larger version of that with challenges. to pay myself through college I was a nurses aid in nursing homes for years and on the double shifts at night I would read the case studies and it always seemed that the nice old folks were the nice young folks once upon a time. and that the ones throwing their shoes at my head, short of dementia or brain disease, were um, not so nice in a prior time. It's just a silly theory that I have :)
as to medication choices. No, no one on here that takes a biologic is asking for lymphoma. we all read the black boxes and some come to biologic therapy after years of pain and other disease modifying anti rheumatic drugs choices. some never. some sooner than later. some later than sooner. they make quality of life choices I would surmise in their hear with their doctor and/or run the gamut of all other possible solutions.
as to working, we all amaze ourselves during herculean or everyday tasks with this disease. some have more financial options than other. some have less. some are married with children some are single with children. some have a fall back income wise or a safety net. some don't. but I agree that we represent every possible configuration on here. nice melting pot.
write all the time
Ros
Patrice
Had the exact same reaction. Only I some how managed to convince myself I didn't have it. So when the doctor called with the results I lost it right there on the phone.
My sister has had it since the age of 19-20, she's in her late 60s now. Before all the meds were available.
She's a cranky one & yes my family did the same excused her behavior because she was so "sick" & in pain. Meaning it was fine if she treated us bad but god forbid we did not help her. Which we did.
To a small degree I get the moodiness but not the rest.
So I am more believing Ros theory.
I have my days but I'm there if anyone in my life needs me.
I'm sure there are exceptions where bitterness can change a person.
That's up to the person.
Side effects scare me also & is a common concern here.
My doctor explained they have to list everything even if the percentage is very small.
I remember thinking when the meds were brought up, it's about quality.
Even if it means quality over quantity.
I don't want to suffer more then need be. I don't want to loose out anymore then I have to. I already had chronic pain before my diagnosis. Almost just caved in & climbed in bed.
I guess we have to fight for what we want. Even if it means fighting this disease with meds that may put us at risk.
Working I would think depends on the job & severity.
My heart goes out to those who have no choice.
I really hope you don't have this disease but if you do we are here.
Support like this can be ever bit as important as the treatments.
This is a wonderful, caring & understanding group.
Wishing you the best, Sammy
What a wonderful way to wake up today. You are all so wonderful!
2s, I can't even imagine being diagnosed with RA in my 30s! You are so brave! Thank you for letting me know I could actually go into remission, too. I've had daily pain for 17 months, and perhaps it isn't RA after all... I won't know until I see the rheumy. The other dx I have is painful enough! I always said I wouldn't change a thing in my life - and I've suffered many losses - until this painful foot.
Angel, thank you. You are lucky not to have commercials for RA meds. They go on for a minute or two with "possible" side effects (by law). Of course the one that scares me most is lymphoma because I nursed my dad through it. I do treasure my husband and realize how lucky I am to have his love and support.
Ros, I love your theory! For one thing it gives me hope because I really am a positive, upbeat, outgoing person. At least I was until the last couple of months when the pain has brought me down. Your theory gives me hope that I will indeed find my Happy again!
pir, again, I am sooo grateful to hear remission is possible! I will indeed keep writing.
I wish you all a wonderful pain-free day!
If this RA, and sorry to say it, but your family history ups the odds that it is, there are a lot of treatments available. Lots of trial and error to find the best relief with the least side effects, but there ARE plenty of options.
As far as the risk of lymphoma/leukemia from biologics, I've been told that the risks were overstated to begin with. I've also been told that the increased risk was seen in young men with Crohn's disease- not us.
Anyway, welcome.
I watched my buddy die from chrohns disease and she used remicaide a long time and got cancer.
but then I watched the effects of a lifetime of prednisone use on my mom and her death from adrenal disease.
we all have to make the best choices. and we are all going out sometimes someway somehow it's the inevitable price of living the dream. :)
here's to whatever choices we each have to make and the best laughs we can have while here
Ros
As far as working. I agree. The ones here that hold down full time jobs have me in awe. That's strength!
Annette, I want to thank you especially for telling me no need to apologize. I tend to be an apologizer and I will make it a point not to do that here because I think it will help me. I have been using a cane since September. I've only left the house a couple of times a month since winter began and DEFINITELY need it when I go out because of the ice and snow. It sure helps to keep less weight on that foot when I have to walk. Funny you mentioned a wheelchair because I was lamenting to my hubby that I'll never be able to take our grandchildren to the zoo again, and he mentioned that they have wheelchairs there. We have an awesome zoo and it takes a day to see everything.
Altoclef, love your name as I was a music major at university and use music therapy with myself often. :) I agree, my family history ups my odds in addition to the fact that I've been diagnosed with two other autoimmune diseases. Google told me RA tends to go hand-in-hand with other autoimmune diseases.
Ros, I love your outlook. I've always said we're all gonna go one day anyway, too. I just never dreamed I'd live with chronic pain. I think I've come to acceptance today - and it's been because of all of you here.
Thank you and hugs to you all!