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.
Hello Acro Gang!
Just had my report come in from the round of about 40 X Rays completed on my upper spine and wrists. I've had ridgid pain in my back walking up stairs, and sore wrists for years. I just thought this was normal and everyone experienced this, the swelling, the inflamation, the burning.
So, big surprise... Turns out I have Athritis in my lower lumbar support of my spine and in both of my wrists and joints. This is 'full fledged' arthritis. However, it runs in our family and I don't think its not uncommon. I can live with it. However, I am concerned, the Doctor said there was some fusing of the lower lumbar in my spine.
I am having the next round of my X Rays for my knees and ankles and feet completed next week. This is the original reason I had wanted my X Rays completed. He originally sluffed this off when I complained of Arthritis pain my Endocrinologist. However, he isn't a physiotherapist.
At 27 it is not good, but not the end of the world that I have developed/developing arthritis with yet levels of IGF to control. Question to all of you is, how long do I expect this to affect my bones. I have read some material suggesting there is no safe IGF levels to return any kind of safe levels from arthritis growth in Acro cases.
Concerned, but not overwhelmed.
Wes
Just had my report come in from the round of about 40 X Rays completed on my upper spine and wrists. I've had ridgid pain in my back walking up stairs, and sore wrists for years. I just thought this was normal and everyone experienced this, the swelling, the inflamation, the burning.
So, big surprise... Turns out I have Athritis in my lower lumbar support of my spine and in both of my wrists and joints. This is 'full fledged' arthritis. However, it runs in our family and I don't think its not uncommon. I can live with it. However, I am concerned, the Doctor said there was some fusing of the lower lumbar in my spine.
I am having the next round of my X Rays for my knees and ankles and feet completed next week. This is the original reason I had wanted my X Rays completed. He originally sluffed this off when I complained of Arthritis pain my Endocrinologist. However, he isn't a physiotherapist.
At 27 it is not good, but not the end of the world that I have developed/developing arthritis with yet levels of IGF to control. Question to all of you is, how long do I expect this to affect my bones. I have read some material suggesting there is no safe IGF levels to return any kind of safe levels from arthritis growth in Acro cases.
Concerned, but not overwhelmed.
Wes
Hi Wes, this reply is for you and also for the others who are reading this and hopefully it might bring some respite from your problems. Firstly my problems are not nearly as severe as many others on here but enough to be a problem. I have had quite a bit of neuropathy pain in the lower legs and feet in particular with constant tingling, twitching, jumping and cramping.
Just over a week ago I decided to give up drinking tea as I suspected that it might be causing some of these problems and also not helping the high blood pressure. Already I have noticed quite a drop in the jumping, twitching problem and my legs are much calmer and pain in several other parts of the body has lessened, in fact I can now wiggle my toes again. So much so that I have not taken an anti-inflammatory tablet for 3 days now.
I believe that caffeine is the culprit and as such coffee would be at least as bad and probably much worse. I am wondering if there are some people on here who would be prepared to give up caffeine drinks for a few weeks to see if they get similar results? I know for many this will seem like cutting an arm off but in reality that is the addictive nature of caffeine.
I love a good cup of tea (Hate coffee though) and have been using peppermint bags as a substitute and whilst they are not as good they are not too bad. Other herbal drinks might be ok but you do need to check each one as many so called "health" foods and drinks are not at all healthy. I have gained about 1.5kgs in weight as I think that I am retaining more fluid as the tea was acting as a diuretic and causing mild dehydration. I only drank 2 to 3 cups of tea per day so it does not have to be a lot to cause a problem.
Obviously this won't cure acromegaly but it is a simple step that might help relieve a deal of the discomfort that we all experience. If anyone is prepared to give it a go please post your results on here and we can assess if it is helpful or not or something peculiar to me (I can be quite peculiar at times!)
Alan
Now my IGF1 is almost at the normal level, and my joint pain is so minor that it barely affects me at all. Still working out, but nearly pain free now.
Clearly your results may vary, because we are all different. I was fortunate to have been diagnosed while I was still young. But my point is that if you are able to get your IGF under control, there is a possibility that the joint pain might drastically diminish.
Just an update to the many great responses on here. XavierMoney that is great that you have noticed a change in your leg neuropathy issues. Do you believe it was the tea that you were drinking?
I have always assumed that Tea was some innoculous substance that really did nothing (at least no harm) to the body. Harm as in stimulation good or bad Etc... I assume you are not a coffee drinker? and now to give up Tea that must be hard to replace the act of making tea, sitting down to a cup of tea, reading with tea etc... How do you change that habit XavierMoney? You have Acromegaly as well?
Recently I started November 25th, I was feeling sick as a dog with my body. Bloated, overweight, the fattest I have ever been. I am a BIG guy to start with I am 6 ft tall and have big bones. LOL Acromegaly aside.
So when I was 291 lbs in November I was disgusted. I was so exhausted tired, fatiuged it HURT right to my bones the fatigue. I had test done to see if it was my adrenals running out. Cause' in Aug of this year I had standard radiation all month, and my remaining TSH levels were (are) expected to drop my Rad Oncologist stated.
I do not have diabetes. I am relatively fit for someone this overweight as I am young 27.
I take alieve extra strength 400 MG before my hour and half workout. And I have to take another Advil Extra strength liquid gel after for my headache. The joint inflamation, burning sensation pain is something I've always been used too. I as well like you VinSimpson have been jogging, running and skiing for years and joint pain was something I considered "normal" with working out, and I thought everyone experienced this "pain" in a workout.
Anyways. I am rambling and I again made this about myself!!! Sorry. But It's now December 17th and I have made it a point to burn 1100 cal a day, and drastically but healthy reduce my intake and I am down from my fattest of 291 back to 265 lbs now.
I feel fantastic. I think I was in a depressed rutt. I do low impact exercises because I have two lower lumbar disks that are fusing and I cannot bend at my waist hardly.
I use the ellipticals, and ab machines to bring in my chest. It works for me. Happy and Healthy.
Bless you all on your Journey