Acromegaly Support Group

Acromegaly (from Greek akros "high" and megas "large" - extremities enlargement) is a hormonal disorder that results when the pituitary gland produces excess growth hormone (hGH). Acromegaly most commonly affects middle-aged adults and can result in serious illness and premature death. Join the group to discuss symptoms, diagnosis, and treatments.

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Endocrine System
/ Acromegaly Support Group

Restless leg syndrome

carebear1022
carebear1022
Hi everyone... I was wondering how many of you suffer from
Restless leg syndrome at night. When my disease first began and now periodically I will wake from sleep with either complete numbness in my hands and arms (must move them cause it is so painful) or leg pain. Is this an indication of uncontrolled disease? My doctor won't test me as often and I think the injection nurse has given me the meds incorrectly for the past two months. I'm worried. Thanks
JohnD1
JohnD1
I don't suffer from this, but I do know that cabergoline (which I take as I reacted badly to Somatuline) is prescribed off-label for people with restless legs syndrome. http://www.ncbi.nlm.nih.gov/pubmed/16931508
J0KEYJ
J0KEYJ
on somatuline at first I got cramp alot also before next rug dose I would get restless leg symdrome..I take a natural tonic which has iron and vitamins and it cleared up this..
wesley84
wesley84
I suffer from RLS. I feel the constant need to stretch and flex my muscles in my legs at times. This can be varied. Growing up as a child I had lots of 'Growing Pains' in my leg muscles, they would occur with the changes in weather and were quite annoying! Doing better now.
deleted_user
deleted_user
I am now 65 and since I was 16 have suffered with cramps. I have tried all of the standard treatments and supplements with limited success and find now that it seems to be worse than ever. Sleeping is very difficult because if I stay horizontal for too long I will cramp. As well as the cramps I get a lot of jumping and twitching in the muscles and numbness in the toes but muscles in all parts of the body will cramp at times. I do get some relief if I spend a lot of time near the surf.

Tests have not shown any deficiencies or excesses and electrical conduction tests showed only mild neuropathy although a muscle biopsy did show atrophy of the TypeB fibres in the muscles. If anyone has had success treating these conditions I would love to know. I am not on any Acro drugs such as lanreotide etc.
Tmed
Tmed
I have RLS also. I notice it mainly at night before I go to sleep. I feel like I have to move my legs constantly and it can get pretty annoying. Is this associated with acromegaly too? John I am on Somatuline right now because they are trying to shrink my tumor before my surgery. If this doesn't work I think I may ask for a try with the cabergoline. The Somatuline is really tough on my gut...uggghhh! Have you had any issues with the cabergoline? I wanted to wait on taking it because I heard it can change the consistency of the tumor and make it more "sticky" and difficult to remove. Hopefully, I can handle the Somatuline a while longer until my surgery!