Hi Flouncy this may be not what youve got but before my drug my hands started hurting.I was doing two jobs .The one I do now and I was caring for a lady.I was unable to lift her and was shaking my hands they was so painful.It was carpel tunnel.I had so much paperwork to get done I had accupunture but this helped to do my paperwork I was desperate but it came back.I was put on my drug and its gone touch wood I put it down to the GH and as at the moment its being blocked it so helped I can use my drill I so am please this went away.I am not saying this is what you have lets hope they find what it is soon I understand the frustration on this.JJx

Hi Jokey, could you tell me what drug they put you on for your pain, glad its helping,

Hi Spiegal I had terrible pain in my hands but during the day not at night which usually happens with carpel tunnel its suppose to be more painful at night thats why alot of people cant sleep.The doctor put me on anti imflamatories this helped a little and I tried accupunture,but it keep coming back When I was put on my injection of somatuline autogel this cleared up straight away its blocking the gh which I presume was what was doing it making my hands and arms hurt.Flouncy has to see what her doctors say but this was one symptom I am glad went JJx

My pain was day and night. For like 3 years. At first it started at night then inceasing worse first by my wrists then eventually all the way up my arms. Also during the day. When I got diagnosed they did hte carpal tunnel study and clearly Ihad it. But becsue we knew I had Acro we waited to do anything. When I started taking my shots beforeo the surgery for Octreotide within a week it went away. I never realized how much pain I was in till it went away. Everyday I still notice and think" WOW my arms and hands don't hurt. " I dont' take octreotide anymore since the surgery. Still waiting to see if my IGF 1 settles down. Hopefully your doctor will know about the impact of acro if not check with the endo.

Hi Everyone, thanks for the replies, well already on Lanreotide autogel 120mg every 21 days, but this pain in my jaw and face is there 24/7 affects my sleep so much, have been to dentist he says its stress, because my teeth and bite has not changed. my levels have not gone down over the last 2 months even though they have upped the dose of lanreotide, maybe they will rethink my meds, I think because the IGI-F and GH are still high, this is what it is, when you talk to the docs about it they seem puzzled but when you look on the site lots of people have jaw and face pain, also get periods of feeling really sleepy, but endocrine nurse said to have a glass of ornage juice fresh is better but concentrated will do, Thanks again, If anyone can throw anylight on Jaw pain, Take care

Thanx guys, i think they said it could be carpol tunnel as i had when i was pregnant with both my kids but they didnt knoww i had acro then. they also think it might be the tissue enlarging and putting pressure on my nerves...is that the same thing??? anyway still waiting to find out but will keep u posted!!

Our skin can thicken with acromegaly mine has thats why people who give us injections might sometimes be not able to do it.so I think the nerves must get affected.This is why they see its important to get our levels down because of what the GH is doing.Keep on at them flouncy JJx

I know what you are talking about. I could not lift my arms up over my head My shoulders and neck hurt so bad, I had nerve compression. I have not had it one time since my surgury. I had the arms and wrist and hands thing to ,it was carpel tunnel syndrome way back when I was pg with our 3rd daughter and I was scared I would not even be able to change her diaper. I could not drive a car cause I could not close my hands. Went away right before she was born..DEBBIE

I had severe joint and muscle pain in knees, hips, wrists, elbows. My knees hurt the very worst but carpal tunnel is a side effect of acromegaly. The connective tissue in your carpal tunnel region is often affected by acromegaly. So many health problems can be a result of this disease, even when a patient is better from tumor surgery (like myself) the increased risk of heart problems, colon cancers, liver problems, glaucoma, etc. means that we all need to be very aware of our bodies and any symtoms we might experience need to be taken very seriously! Be preventive FOLKS it is the first defense.