I was dx w/ fibro and CFS at the same time 7 years ago. Everyone says exercise helps, but that's not the case for me. If a little exercise causes more muscle ache and terrible muscle weakness. I shake noticeably even after minimal physical endeavors. My arms get so week I can't hold an 8 lbs dog for more than a few minutes. My legs feel like jello too.
I read a post from FB in which a woman said she has to ride her bike for 10 miles so she can get relief for her FM. I can't get off the couch or out of bed sometimes. These illnesses don't make sense to me. Just how bad off are most of the patients dx with these conditions?
5 Hearts
-Hi! -I truly think everyone experiences are slightly different. I find exercising hard to do while I'm doing it. But after I'm done that day I seem to feel better. Swimming or moving around in water I find very helpful. It's much easier to move my body in water. Perhaps some chair yoga, or stretching would help-YouTube has many videos to follow. I also think (I've had fibromyalgia for many, many years) -I go through times where I 've been bedridden and/or can't get off the couch ,-so I understand, for me it's a bit of a cycle. Here to chat if you need :)
1 Heart
I'm an amputee as well as having lupus. I am finding that just putting on my prosthesis so I can stand is almost to much for me. I have to take breaks just putting on the sleeve. It is taking me about 3 hours just to get ready to go anywhere and by then I'm too tired to go. I'm getting very frustrated and feeling totally isolated. My husband doesn't seem to understand that I can't just jump up and do stuff any more. I recently fell and bruised my hip of my one leg so it has gotten harder than before. Right now I just want to curl up and cry.
1 Heart
@ColleenA -I am so sorry you are feeling this way. We are here to listen ans support you!
I'm just frustrated with feeling all the work I did adapting to loosing my foot has been for nothing. I get angry with people telling me how lucky I was to survive and that I shouldn't feel the way that I do. I feel like screaming at them. They have no idea how hard it was to get to where I could walk and go up and down stairs. I was even able to drive myself places. Now I can't even get into the car without help.
1 Heart
Lupus is a well respected proven illness, unlike CFS OR FIBRO. When your friends criticize or give you shallow pep talks, it might make an impression on them if you suggest they re search your illness so they will understand. Also, if you are feeling the strain of depression, there is no shame in seeking help from a psychiatrist. They should be knowledgable about your specific illness and how it affects others like you. There are some medications that are great in relieving pain and depression. Only a very few people in our lives will ever understand what we go through. I Ignore the others and avoid the discussion as much as possible.
1 Heart
It works both way for me. Some days if I don't get up and more I hurt more then others I hurt after doing the dishes. Just find what works for you and pace yourself :)
1 Heart
As an abnormal psychologist I do understand the effects of this illness intellectually, BUT there is a big difference in intellectually and emotionally. I am able to keep myself from sinking into a deep depression using techniques from my training. I still get frustrated with myself and want to scream but it doesn't last too long. I would recommend seeing a psychologist first to see if you can control the depression other than using drugs. If your depression gets to bad going to a psychiatrist for antidepressants is nothing to be ashamed of though.
1 Heart
@ColleenA as I read your posting I noticed you’re an abnormal psychologist and I have a husband who is being accused of sexual misconduct and am looking for a good support group option or psych help or any suggestions anyone can come up with