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 all!
Does anyone here find that the lower their energy levels, the worse their pain becomes?
I was diagnosed five years ago, when I was thirty, and have been quite lucky that it's been possible to stop almost all of the inflammation with MTX and Simponi. However, I've been having ongoing problems with fatigue and both joint and muscle pain. I managed to lump along for four years after diagnosis, working part-time and taking care of my two young children. A year a go I finally hit the metaphorical brick wall and have spent the time since trying to rehabilitate myself with the help of a host of professionals. I didn't work at all from April until mid October and was feeling quite a lot better when I went back to work part time in October.
Two weeks in, working a whopping 16 hours per week, and I feel like I'm heading back for rock bottom :( I've started sleeping 10-13 hours per day again, going to the gym feels next to impossible, and a trip to the supermarket requires an Herculean effort. Aside from the fact how mind-bogglingly frustrating this is - to have spent all this time trying to get better and apparantly having nothing to show for it when it comes to working outside the home - I'm also experiencing a spike in pain levels to go with the exhaustion. Once again I wake up sore from the experience of sleeping in my bed, cuddling with my five year old is a minefield of pain and my joints are acting up again, even though they're not swelling.
Am I alone in this reaction? To find that pain-levels increase when the exhaustion-levels go up?
My team, btw, agrees that I do not have fibromyalgia in addition to the RA, even though some of my symptoms are quite like those of fibromyalgia patients.
3ldsmama - gosh, I imagine teaching must be one of the hardest job options for RA patients - on your feet and on high alert all day. I feel for you! I don't think I can answer your question, though, I'm in Europe where disability works diffrently (I'm still on extended, part-time sick-leave, not on disability). But if you can't cope in your current situation I think the first step would be to get a second opinion. I mean - how can a doctor not be a fan of disability?! Disability shouldn't be thought of a choice, really, but rather as a safety net to catch you when all other options have been exhausted (pardon the pun ;)). Ugh!
Get another doctor. Your physician's political opinions shouldn't be yours to live. I've had docs like that and they just aren't responsive to your needs. The consequences are too great for you, and there are no consequences for them.
Just my two cents.
A: Sure. One reason is that when your energy level is down, you do less and have more time to focus on the pain.
Q: How are people able to work with RA?
A: Those of us who got effective treatment early in the game don't have constant pain. We may feel a bit lethargic, but basically life goes on. [GET EFFECTIVE TREATMENT EARLY!!!!]
is the part time at work with the contingency that they are seguing you to full time again?
how many years have you been on the biologic simponi? do you think that your rheumatologist will be evaluating the efficacy of this biologic?
it used to mess with my spirit when being at work with fatigue - but i found that I ruminated less on the disease while fighting to keep the house and the kids and putting them through grammar, high and college - (my only silver lining) and I tried more drugs then - I am less adventurous now in the they are going to put me into remission department. currently pissed off at my rituxan experiment :) that being said - maybe you could ask a new rheumatologist about the continued efficacy level of your current med plan? Disability is about function: limitations and restrictions and what you are not doing and what you can do. maybe there is a disconnect between how you feel and what the current MD sees. Bring a mentor with you (best friend) to the next appointment (if you can).
hang in there 35 and two kids and work and rheumatoid disease means you are another superwoman like us all :)
depotblue
@ Lalage - Fatigue is a real part of RA. There are many references to this problem in medical literature, and the Arthritis Foundation as well as John Hopkins and many other expert magazines talk about this. Please read up on it, and there are some good tips there, but the main thing is to not overdo it. Rheumatism is tough opponent, and it is different for everyone.
My journey has not been as easy as some here and I have daily challenges. I am happy for them if they have very few if any problems with their RA - but most of us do and that's why we are here - for support and understanding, and tips on how to live with Rheumatoid Arthritis. It really changed my life - so don't you feel bad if you can't run marathons and build a playground like the actors on the commercials. If they used a real patient with moderate to severe RA on the commercials, they wouldn't be able to sell the medication. The real patient would be sitting down, outside, with a cane nearby. - That's my remission reality. I can't speak for everyone, but that's what my life is now, and I am thankful for it. But I am 59.
Choose what is important for your happiness and give your best. You are still young and you have a lot of pushing through to do still. I had to do the same thing, but I thank God for the years I have been given because now, my kids are now adults, I was able to retire and I can pick a day to do a chore and the second chore is always cooking. Then my energy runs out.
That's my experience - but yours will be different,
She asked a general question, not a specific one, which is why I answered as I did.