confused and desperate hms and fibro
Posted , 2 users are following.
Hi, Im 34 have hms, fibro and a list of other illness. My Dr is unsupportive and just getting a referral to the rhumatologist is a story in itself. Turns out it wasn't all in my head...Anyways after diagnosis she told me to exercise, like Pilates to ease my pain. But even after minimal exercise I'm in severe pain. I keep at it trying different things, being gentle and doing research but nothing seems to be helping me. I had to go off work due to the pain just piling on everyday. Went to physio today he was my last hope. He gave me 4 stretches and told me to come back in a month if I need to. This contradicts the rhumatologist and leaves me here on this forum trying to desperately search for what I'm supposed to do. I feel like if I only stretch it will make me worse, and only progressing after a month leaves me discouraged that I'm never going to get better. I'm loosing my job of 9 years over this. And my doc fills out my disability forms in the most lazy one to two worded answers. So that's not even an option. Advice anyone?
0 likes, 3 replies
denise79180 natti82
Posted
I understand what you're saying. I feel the younger more up to date drs are more help with this problem. After being pushed from pillar to post for years and getting no where this is what worked for me.
I have jhms.
When ever possible gentle exercises are good. We need to keep our muscles as good as we can as our ligaments are not much help. Swimming or water walking are great if possible. Try to find low impact things. ie walking rather than running. I still have bad spells and just have to accept them. Good spells = exercises when ever possible.
Try researching ehlos danlos syndrome. Some of their info is helpful. Try using a dr that understands and is helpful. There are some out there. Where is the question.
Good luck trying to get some good results. It takes time. Chin up. Try to stay positive.
natti82 denise79180
Posted
Thanks for your reply just knowing that there's other people living with this makes me feel more hopeful. I will stick with this low impact routine and keep looking for a new Dr. Does anyone get waves of severe pain in their whole upper body lasting around a half hr to an hr? It's a burning aching feeling, its brutally painful. I would like to know what this is and what's causing it.
denise79180 natti82
Posted