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
I don't have any medical answers for you, but I offer sympathy. I have been experiencing joint pain in my hip that I think is arthritis and acro related. I haven't had xrays done as my docs are working on the 'majors' right now trying to get the IGF under control. (Just had surgery this past Sept) They say that we can deal with the other side effect issues as we go along. Problem is, the pit tumor didn't bother me, the its the side effects that are the pain!
Praying that you find relief soon.
radiation. Take care, H x
Sorry to hear that you're having these problems with your wrists and spine. I have been diagnosed with osteoarthritis in my right knee and need to have surgery to remove a 'loose body' and repair the meniscus (amongst other things). I've been told that these issues are a result of degeneration of the knee cap where the arthritis is worst. Also, the consultant told me that my knee joint was that of an older person and that joint problems are common in people with Acromegaly. I'm having pain in my left hip too but one step at a time!
I think once the damage is done to your joints it can't be rectified, only managed. I will find out more from the surgeon and will report back as he said he will be able to give me an indication of what to expect further down the line after he has seen inside my knee. I will let you know what he says and hope you can get the proper treatment and pain management you need.
Best wishes, Rosie : )
You certainly are strong, the tumor was incredible pain for me, the headaches! My lord the headaches! LOL... You are lucky as am I that we are young, and we can certainly take care of our joints. Do you take any Omega's other supplements?
Wow Furkidmom, you exercise 10 hours a week. I do about an hour a day. I will go for a run in the woods around my house, and I find that my joints after are so swollen, stiff, and throb. I used to think that was the pain everyone had after exercising! Do you experience that pain after your 10 hours, if so what do you take? I have been urged to do low impact exercise to 'save' my joints for the future. Although, I've read arthritis articles online that refute high impact exercise and related joint degredation. So I guess we'll see!! LOL
Jokey my friend! My General Practitioner, I recently got a new one. My old Doctor was a total... Erm, I won't say, but he was more interested in his side 'botox' practice than researching the disease Acromegaly I had as his patient. My new Doctor Fantastic young guy, he devotes his time and emphasizes in wholistic aproach to pain management. Most Doc's do these days anyways, he stated he will never prescribe narcotics for pain management IE Arthritis Etc... I stated to him... "Hey I understand you completely. My Favourite show is Intervention!" and he laughed and stated.. "That's my Favourite Show!!" So... We hit it off. Gladly!
Melissafry38. I am only complaining of initial stages of having Acromyopathy of joints etc.. The arthritis you are experiencing, I cant begin to emphasize and yet you wish me the best. I am hopeful your pain in your disks can be managed soon. I have witnessed how painful displaced spinal discs can be. Bless you!!
Heya Molehands, I was afraid of your answer. I had to ask it anyways. I've always had issues with my joints since age 7. I used to have what my mom called "Growing Pains" in my legs and muscles. I had to use Rub A535 almost bi-weekly till age of 14. I wonder if that was at the time some sort of sign of problems to come. IE Increased GH or something?... How do you manage with your Arthritis, do you have Arthritis. I wonder what the percentage of Acromagliacs do not develope Arthritis... I would imagine it is quite low?
Hello Rosie! Have you heard back from your Doctor regarding your knee cap issues? Do you go to Barts in London? I have been hearing about this remarkable facility! I hope your surgery goes well and that things get put back in place for your knee. It wouldnt be much fun having a peice of 'body' is it your consultant stated being inside your knee cap displaced?... That gives me the shivers to think. Do you have to walk with some support. Perhaps a knee support sleeve after you might wear for some stability.
I think having all of these issues, arthritis, the pain, the degredation of wear and tear... Is a large issue for the 'normal' population at large. At least for the elderly... Question to everyone is that... All of us here being young ones ;0) Has your Doctors ever 'sluffed off' or 'rebuffed' your concerns about joint pains, arthritis issues. I have had this reaction from a number of Doctors giving me 'the look' when I talk about my joints and knees as if 'your kidding me, now I have to worry about this now too?'
I know it is one step at a time, and I am only a year into this process being diagnosed with Acromegaly March 2011, but so many issues are finally fitting the puzzle I am almost in a mad dash to get it done. As is my parents, they want to see the best for me, they sometimes overwhelm my Doctors from the side lines. I have to tell them to stay out of appointments etc or they'll make me a black listed patient!
Jeezzz... I needed this all to vent and blog. Arthritis issues. Thank you :0) Hugs All.
I am 58 and had pit surgery in 2007, since which time my IGF-1 has been normal. In the past 3 years I've had three knee scopes for damaged meniscus in both knees. This past year I finally gave up and replaced both knees. While I have some family history of arthritis, my doctors believe that most of my knee problems were from acro damage causing arthritis. I do take celebrex for joint pain in several places. Do not let the drs. discourage you. Your pain and its source are not imaginary or hypocondriacal. You might consult a rheumatologist.
Yes, the motrin or other muscle and arthritis relievers such as Advil and Tylenol I take, can be hard on the liver... Especially daily basis and for us who have a host of other meds to metabolize.
I take naturally Tumeric, or curcumin... omegas and calcium mag with zinc... Bones and joints dont seem so bad. But I cant go without the other advil and tylenol.
Wesley,
I am 58 and had pit surgery in 2007, since which time my IGF-1 has been normal. In the past 3 years I've had three knee scopes for damaged meniscus in both knees. This past year I finally gave up and replaced both knees. While I have some family history of arthritis, my doctors believe that most of my knee problems were from acro damage causing arthritis. I do take celebrex for joint pain in several places. Do not let the drs. discourage you. Your pain and its source are not imaginary or hypocondriacal. You might consult a rheumatologist.
Hello JeriTx,
Good for you in having your surgery done. That must have been a long recovery with both knees at the same time? Is your damaged meniscus peices of cartiladge in the joint, I am confused.
Certainly, we have to be big advocates of our own health in this system. Especially in the acro community where doctors have little knowledge of its effects and related issues; often I get quickly labelled a hypocondriac due to some doctors ignorance on the issues.
Jeri
Ive had problems with my joints for a while now including my hips, shoulders and to a lesser degree my neck and lower back. My hips have been getting worse lately and I was told 12 months ago that I will need hip replacements in the next 6 to 8 years (although at this rate I think it might be sooner).
I recently went looking for some information on Acromegaly and arthropathy as my Endocrinologist doesnt seem interested in my joint problems either. I found a few interesting articles that I thought I would share for those that may be interested:
http://www.eje-online.org/content/160/3/357.full.pdf+html
http://joe.endocrinology-journals.org/content/155/1_Suppl/S41.full.pdf
http://www.eje.org/content/158/5/587.full.pdf+html
As Molehands said, unfortunately it seems that once the damage to the joint gets to a certain point, there is no reversing it and it will only get worse. I guess pain management and ultimately joint replacement are the only solutions?
Does anybody know if fish oil or any other products can slow the process?
I hope you find the articles interesting. Good luck everybody!
Cheers,
You certainly have the conditions covered. Do you have a dedicated Specialist for your OA Etc Conditions?
I have been told that Morphine patches and such are used for when the pain gets unbearable. Not that I have been asking for a patch, but my new Doctor strait out stated he will not prescribe narcotics for OA issues. I can understand, how can one learn to dose themselves really with something like a Moriphine Patch?
I've had them in the hospitals hydromorphine etc... but wouldnt want to bring that home.