carljr17
New member
- Joined
- Sep 10, 2016
- Messages
- 6
- Reason
- DX FIBRO
- Diagnosis
- 00/0000
- Country
- US
- State
- MI
Hi all, I'm new to the group and wanted to introduce myself. I have such a long history I don't even know where to start, but I'll try to be brief and not ramble too much.
I was finally officially diagnosed with fibromyalgia this year, but I have been enduring the symptoms since I was 17 and it would be an understatement to say that it has ruined my life. I used to be quite talented with computers and at a time when very few people have those skills; I could have been really successful.
Of course, I've been through the medical system so many times and have had every conceivable test (EMG, MRI, PET, SPECT, etc. etc.). I do not appear to have a neurological condition, although my symptoms do seem to suggest that I do. Not only do I have constant pain in my hands and arms (and now my neck, back, and just about everywhere else) but I also feel electric shocks and tingling, mainly in the wrist area or fat pad area of the forearms, although I can get them in other places at times. I can even feel the shocks in my brain especially when I hear sudden noises that surprised me, like the creaking of the door. I cannot at all explain this.
I also suffer from chronic neck pain which prevents me from sitting at a desk. I lay in bed all day, and use my computer with voice recognition (woefully inadequate for most tasks).
Like many of you I also have IBS and can rarely digest anything without severe discomfort. A couple of years ago I was a walking skeleton and almost died. Of course I have had every possible G.I. test and was even tested for SIBO this year (hydrogen breath test) and tested for celiac disease twice. I have tried altering my diet drastically, including surviving on nothing but chicken soup for a year, eating nutrient dense foods, raw milk, of course organic, vitamins, minerals, herbal supplements, and everything else with no real effect.
Insomnia has also been a big problem for at least the last 10 years. I take Ambien which does technically get me to sleep, but the sleep does not feel deep or effective. I do lots of exercise including jogging, swimming, and light weights . I feel plenty tired but never sleepy.
Working is out of the question as I can barely use my hands for anything, cannot use a computer, tablet, phone, etc. I cannot even really cook or do almost any housework either. I've been so long in this condition that I've hardly logged any work credits and cannot even collect Social Security so I'm in a bad way financially, but that's really the least of my concerns.
It's really depressing and frustrating to have to wake up every day and be in constant pain, to be unable to work or contribute in any meaningful way, to try and do and eat the right things but never experience any relief And to never get any answers or feel any sense of going forward. I know there are many others who can relate to this.
My doctor has me on the usual medications for fibromyalgia
Lyrica, Cymbalta. I took gabapentin for many years as well with no effect. The Lyrica can sometimes give me some relief, but only if I take double the dosage that my doctor prescribes, and I end up running out and not being able to refill.
I'm going to research medical marijuana but my understanding is that isn't covered by any insurance and I don't see how I'm going to be able to afford it.
Anyway, thanks for listening.
Carl
I was finally officially diagnosed with fibromyalgia this year, but I have been enduring the symptoms since I was 17 and it would be an understatement to say that it has ruined my life. I used to be quite talented with computers and at a time when very few people have those skills; I could have been really successful.
Of course, I've been through the medical system so many times and have had every conceivable test (EMG, MRI, PET, SPECT, etc. etc.). I do not appear to have a neurological condition, although my symptoms do seem to suggest that I do. Not only do I have constant pain in my hands and arms (and now my neck, back, and just about everywhere else) but I also feel electric shocks and tingling, mainly in the wrist area or fat pad area of the forearms, although I can get them in other places at times. I can even feel the shocks in my brain especially when I hear sudden noises that surprised me, like the creaking of the door. I cannot at all explain this.
I also suffer from chronic neck pain which prevents me from sitting at a desk. I lay in bed all day, and use my computer with voice recognition (woefully inadequate for most tasks).
Like many of you I also have IBS and can rarely digest anything without severe discomfort. A couple of years ago I was a walking skeleton and almost died. Of course I have had every possible G.I. test and was even tested for SIBO this year (hydrogen breath test) and tested for celiac disease twice. I have tried altering my diet drastically, including surviving on nothing but chicken soup for a year, eating nutrient dense foods, raw milk, of course organic, vitamins, minerals, herbal supplements, and everything else with no real effect.
Insomnia has also been a big problem for at least the last 10 years. I take Ambien which does technically get me to sleep, but the sleep does not feel deep or effective. I do lots of exercise including jogging, swimming, and light weights . I feel plenty tired but never sleepy.
Working is out of the question as I can barely use my hands for anything, cannot use a computer, tablet, phone, etc. I cannot even really cook or do almost any housework either. I've been so long in this condition that I've hardly logged any work credits and cannot even collect Social Security so I'm in a bad way financially, but that's really the least of my concerns.
It's really depressing and frustrating to have to wake up every day and be in constant pain, to be unable to work or contribute in any meaningful way, to try and do and eat the right things but never experience any relief And to never get any answers or feel any sense of going forward. I know there are many others who can relate to this.
My doctor has me on the usual medications for fibromyalgia
Lyrica, Cymbalta. I took gabapentin for many years as well with no effect. The Lyrica can sometimes give me some relief, but only if I take double the dosage that my doctor prescribes, and I end up running out and not being able to refill.
I'm going to research medical marijuana but my understanding is that isn't covered by any insurance and I don't see how I'm going to be able to afford it.
Anyway, thanks for listening.
Carl