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Men with Fibro
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RMiller posted:
I am 64, diagnosed approx 25 years ago I have gone thru meds like water. Currently I take 2400 mg of gabapentin and 60 mg of morphine sulphate among others. Because of severe migraines I get Botox shots every three months; most of the shots are in the skull and then down the neck; they work except for the last couple of weeks before the next shots are due. Cold and damp turn joints and muscles into hot boxes of pain. I found a pain clinic who gives me trigger point injections when it gets too overwhelming and I get some relief. I know they say only 10% of fibromyalgia patients are men but I want to share it's been a very painful journey and now it's just one day at a time.
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BetteK responded:
R,

You're right, most of us with FM are female, but we all HURT the same. It sounds like you are getting most of your pain covered most of the time. That seems to be the gold standard for us.

I'm interested in the experiences you had early in your journey. We women get a lot of condescencion and not enough belief from our healthcare providers. Did this happen to you, too?

I'm asking because, when my husband became painful, he came home from the doctor--on his first pain visit--with meds it took me 20 years to get. His pain was believed. Mine was not. And this was from a caring family practicioner who I know would have done anything possible to alleviate my pain if he had only believed in it. Hubby is now on Lyrica, Celebrex,
Cymbalta, and fentanyl pain patches along with his diabetes, blood pressure, and cholesterol meds.

As researchers find out more of the mysteries of fibromyalgia, I feel that there will actually be a cluster of related abnormalities found. Treatment will be individually tailored for each patient's need as determined by a simple blood test repeated routinely--as a diabetic's A1C is done every few months now.

Until that day,

BetteK
 
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katmandulou responded:
Hi RMiller, and welcome!

You're right, there are few men here, it's good to get another opinion of what the heck this is we've got. My doc's PA says men use the medications differently then women. Imagine that!

Have you found the Helpful Resources in the right-hand column helpful? Also check out http://www.butyoudontlooksick.com/ . It has good tips for us, and you have to check out The Spoon Theory - it will help you explain to people what it's like to be in your body.


Have your doc check you for Vitamin D deficiency. Sounds simple, but we who live in the northern hemisphere are usually lacking in D.


Have the best day you can possibly have,
Lou
 
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RMiller replied to BetteK's response:
This all started in the mid 80's with joint and muscle pain. I almost lost my job because I missed a lot of work. I found a pain specialist who gave me trigger point injections up to 30 injections per session. He saved my job and eased the pain for up to three to four months. There were a lot of stressers during that time which didn't help but the injections kept me working.After working all those years I finally got promoted to the job I thought I would have until retirement. About 1995 the injections no longer were giving me the relief they once did and by 2002 I was using a cane to get around. I've tried Lyrica and Savella without any success. I was on 240 mg of oxycontin for years . In April 2002 my doctor went through my entire file and then looked at me and said "your done, go home". My working days were over and ended up on Social Security Disability. The morphine sulphate is losing its power and thanks for mentioning the fentanyl pain patches. My doctor and I need to have a talk! We just have to take it one day at a time. Thanks
 
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fibroinsd responded:
wow..you have been through a lot...I hope we can be a helpful community for you...We do have a section called tips and resources on the side..and you can look for the post called Member Toolbox...and there are suggestions of what has work for some of us here...

Glad you found us here..and hope you will jump into any conversation..

cece
Let's put the fun back in dysfunctional !- Mary Englebright


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