SEVERE FIBROMYALGIA

[momof15]

Hello All, My Rhuematologist/Nuerologist told me that I needed CHIARI MALFORMATION SURGERY ASAP. BUT SINCE THE LOCKDOWN ITS BEEN CANCELLED. NOW MY FYBROMYALGIA IS OUT OF CONTROL. I CAN'T EVEN STAND TO BE TOUCHED OR WEAR CLOTHES. ITS SO BAD. THERE HAS TO BE SOMETHING OUT THERE. BESIDES HEAVY PANPILLS TO GET THROUGH THIS!!!! ANY SUGGESTIONS? I NEED TO LEARN TO WALK AGAIN AND STAND UP TO COOK WITHOUT DROPPING EVERYTHING. TIA. (thanks in advance)

[lupus-support1 Administrator]

I am really sorry to read this & understand your considerable distress. Many people don't understand FM.

First, you need pain relief. Can you get advice from your GP? Sorry is you have already done this, but there are experts in FM who may be able to help you.

Second, while this may seem counterintuitive, some form of exercise may be helpful - advice from a physiotherapist?

If you cannot stand, there are walking frames - not the small frames - but those following major spinal surgery (I needed this a few months ago). This will support you & you can certainly stand & cook!

Hands - if your grip has gone, there are utensils that you can purchase eg for those with severe rheumatoid arthritis.

Last, but not least, contact with other people. Do you have a support group where you can talk to real person on the phone or Internet, this is so important.

I'm sorry I can't offer more help. You can always talk to me here.

Stay safe & be well!

Ros