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JustMeInBC

New member
Joined
Feb 22, 2016
Messages
4
Reason
DX FIBRO
Diagnosis
06/1989
Country
CA
State
BC
I'm so glad I found this site! I was diagnosed in 1989. At that meeting, the rheumatologist who gave me this diagnosis (I had absolutely no knowledge of fibro) said "Some people go on to live their lives, and others aren't able to ever get out of bed again." I decided I would belong to the former group.

For the most part that worked, although I relied on over-the-counter analgesics, often quite heavy doses. I have an extremely low threshold for pain tolerance, and had major surgery last spring from which I simply didn't seem able to bounce back. I've been struck with a variety of symptoms since then (bowel and bladder problems, abdominal pain, and absolute exhaustion) that I feared must be something life-threatening. When extensive test results showed nothing abnormal and my research showed that all symptoms were often typical aspects of fibro, I realized that my 27-year denial of how fibro could affect me didn't work anymore, and decided that I would have to learn to live with this miserable disorder.

I take three different types of anti-depressants and gabapentin. Happily, this combination does seem to be working on coping with the pain without a reliance on OTC analgesics. I've begun a mild exercise program and am trying to cut myself some slack on the exhaustion front - my 'wonder woman' determination isn't as easy to tap into as I head into the ripe old age of 60.

My main problems now: being soooooo tired most of the time, the full-body aching, and particularly acute abdominal pain; struggles with short-term memory and the difficulties that causes for conversations. My brain seems to be constantly so busy processing pain and exhaustion that participating in or even following a conversation is a real challenge.

Questions: how do you find the energy to simply move? How do you find ways to keep your brain sharp when the fibro fog is 24/7/365?
 
It is hard to stay focused when you are in pain. I suffer from severe depression because of the constant pain that I am in. I have fibro, CFS, severe depression, degenerative disc disorder, pinched nerves in my spine and back, bone spurs in my elbow and and thumbs, carpel tunnel syndrome and on and on. I will be 61 next month and sometimes the thought of living another 10 to 20 years like this is more than I can handle. Have you thought about applying for social security disability? It is a long process. I have been waiting two years. This June I go before an administrative law judge and he will decide if I get it or not. If not, I am going to quit the process because I will be eligible for regular social security in April of next year. Good luck to you.
 
Hi just me. I think perhaps you wee one of the lucky ones that got diagnosed before your problems became bad. welcome to The ones that wish they could just choose to get out of bed and function everyday. It is humbling, heartbreaking and sometimes overwhelming. But you will get stronger at it everyday.
You didn't say how long you have been on the gabapentin or how much your taking. It may not be the medication for you. Gabby, when it started working for me helped my brain fog more then anything, Lyrica though me into severe depression...you have to find the right med and the right dose for you. Is very frustrating but keep going, what choice do we have...I'm with you I can't do 10-20yrs of non stop misery.
Are you getting good sleep? I preach good sleep a lot. Your brain needs that deep sleep to heal itself the best it can. Please if your not getting the kind of sleep that dreams are made of not nightmares that wake us, insist your doctor prescribe something.
You most likely will never be the wonder women you used to be and that's ok because your going to become a new kind of Wonder Woman. Your going to become stonger then you ever thought you could be.
I sooooo get how hard it is to think clearly (to think at all) when your in pain all the time. Please keep us posted
 
Thanks Krista, and good luck with your upcoming disability hearing! I live in Canada so there is a different system in place up here. I'm fortunate in that my husband had a good job with great benefits, and that's taken a huge pressure off me. My family history carries more than its fair share of problems with depression, and I've always had to keep an eye on that. I'm starting to realize I have good days and not-so-good days, and this may be the norm from now on. This is hard for me to accept, though...
 
Thanks Eyesup! It's funny when I look at everything retrospectively, I see how much I was struggling with fibromyalgia over the years. It's been a relief to not have to go to work everyday - and then rely on large doses of Tylenol to keep moving during the day. I had been on gabapentin for diabetic neuropathy (for over 2 years now) and on a dose of anti-depressant for episodes of depression and the strong family history of depression and suicide. I feel lucky that various medication adjustments in recent months seem to be a big help for the horrible full-body feeling of being compressed more and more tightly into a depressurized box. But the abdominal pain and discomfort has been shocking in its intensity over the past year, making it tough to function in the world. And the fog - gawd, the brain fog. Bah!
 
Wow Justmeinbc...you are the first person to describe full heavy body feeling like being crushed and compressed tighter and tighter... i get it all over my body and even in my face jaw and head.

Feels like i am being crushed alive and going to spontaneously combust with buzzing vibrating muscles that burn and throb all at the same time.

Welcome to you.
 
Wow Justmeinbc...you are the first person to describe full heavy body feeling like being crushed and compressed tighter and tighter... i get it all over my body and even in my face jaw and head.

Feels like i am being crushed alive and going to spontaneously combust with buzzing vibrating muscles that burn and throb all at the same time.

Welcome to you.
Isn't it the worst??!! I try to stretch out various limbs and my back and neck, which works for micro-seconds, but then I'm right back to being 'crushed.' I've joked for years that I need to be put on the rack and stretched out.
 
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