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Old 04-15-2012, 12:28 PM   #1
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Fybro & non-believer's

It amazes me still, to this day, how many people think Fybromyalgia is "all in your head".
I was diagnosed with FMS over 10 years ago. At first, the docs (not my GP) told me it was Lupus. Devistated, I immediately contacted my GP, who referred me to a Rheumatologist.
After carefully going over my symptoms, blood work, and trigger points, my Rheumatologist told me I had Fybromyalgia. He told me it was a mysterious illness, with many, many symptoms, and it was still in the first stages of being investgated by other Drs.
He told me there was no cure; that it could get better, or get worse, or stay the same. The symptoms were different in each case. The Drs. were investigating on a case by case basis.
For about 5 years, I stayed the same. My husband, at the time, who is now my ex, did not believe in Fybro. He, his mother, and his family, were all the nay-sayer's. It was all in my head, was the constant with them.
Eventually, I could no longer work. Even 4 hours a day at a desk job exhausted me. My ex was furious that I was not "contributing" to the household expenses. Mind you, our only daughter was grown, with a job of her own, while she attended college.
New things were happening in the Fybro world; more Drs were believers; more drug companies were trying to find the "next best thing" in pain relief.
My Rheumatologist is a sweetheart. He is the most sympathetic person on the planet. When I told him about not being able to work, he immediately gave me the name of an attorney that only took disability cases that he could win.
After meeting with this attorney, he agreed to take my case. I got turned down once (standard procedure with SSD cases), he appealed, and I won.
So, I started receiving SSD payments immediately, and could then "contirbute" to the household.
But then menopause hit, and between that, and the Fybro, I was down and out more times than not.
This did not sit well with my husband, who went out and found himself a girl 20 years younger than himself, and divorced me.
Mind you, I walked away with alot. After 26 years of marriage, I felt it was only fair. I got all of his 401K, half of his pension, half of the house, and anything I wanted out of it.
So, I bought myself a nice little modular in a 55+ community, and invested his money.
In the meantime, the Fybro is getting worse as I get older. I wake up so tired every day, I could easily crawl back under the sheets and sleep the day away.
After a day and night of watching my nephews, who are 8 and 6, I am in agonizing pain all over. I love them to death, but they kill me.
I take Lyrica, a God-send in my eyes, and a host of other medications. (My ex calls me a "drug addict")
I bowl with the people here in the community, and I love it. But by the 3rd game, I feel like dying. My arm, and back are killing me.
They say to exercise to keep the Fybro in check. Who are "they" kidding"?
Exercise is a curse word to me. And the brain-fog!! Sometimes I forget my family members names.
Having Fybro is aweful. Some days I wish I could start my life all over again, as someone else. Anyway, that is my story,
momroe

 
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Old 04-15-2012, 09:14 PM   #2
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Re: Fybro & non-believer's

Definitely know how you feel. People who don't experience chronic pain just can't understand how we feel or anyone that has chronic pain. Hang in there. Gentle hugs!

 
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Old 04-16-2012, 01:51 PM   #3
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Re: Fybro & non-believer's

Welcome Momroe! I'm glad you found this board & look forward to seeing you around!

Don't you just hate EX's! Mine unfortuetly took off with all our money & everything but the house & furnature. He actually expected me & the kids I move originally, didn't want custody. But once I put a restraining order on him, he decided he wanted the kids & tried I get the house. That was a tough few yrs. Even now he claims them on taxes while I'm the one paying with medical on them & paying all expenses. I am responsible for all transportation. Of the kids, ect. Grrr Anyhow I don't know why I'm telling you this. I guess I just feel your frustration... I know we are better off without them
I have a great husband now, but he still has his moments & likes to make hurtful comments. I think he's just had a hard time excepting this & honestly thinks it'll go away...
We have 4 kids. 12 & 9 yr olds from my previous marriage & his 8 yr old from his previous relationship then we have a 2 yr old together. We have full custody. Sometimes I feel like I put to much on their shoulders. They each have chores & really helps me. Unfortuetly they are also messy demanding kids lol
Anyhow, I agree, it's tough when people don't beleive in fibro & the ones that do, don't get it... It's hard to not let it get to you... I'm sure my husband thinks I'm being lazy today since I haven't don't much but lay on the couch. But it's a painful day & never seems to get easier till afternoons... I'm putting the little one down for a nap soon & gonna ride my stationary bike. I have noticed exercise helps with pain it's just hard to exercise when you hurt so bad... But I know it helps as long as you don't over do it... But I reward myself afterward with a nice hot bath which helps so much!
You should be proud of yourself bowling! Thats not easy! I don't think I could do it... But we are all different & learn what we can & can't do. Socializing is exhausting for me. I feel like I put so much energy into visiting & smiling... But it's good to get out!
It sounds like you are handling this well even though it's far from easy!
__________________
~♥Tori♥~
Fatigue & Derealization (PTSD?) 1999
Hypothyroid~ 2003
Back injury~ 2005
Severe Degenerative Disk, Arthritis, Mild Scoliosis.
Fibromyalgia diagnosed 2009
Neuropathy
Migraines?

 
Old 04-17-2012, 12:49 PM   #4
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Re: Fybro & non-believer's

Thanks guys.
It's easier to deal with this when there are other's out there in the same boat as yourself.
Someday, someway, we will muddle through this, and come out better for it.
At least, that is my prayer.

Momroe

 
Old 04-17-2012, 11:39 PM   #5
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Re: Fybro & non-believer's

If your back if killing you, I strongly suggest getting and MRI.
You can have fibromyalgia and degenerative disk disease also. (I am sorry).
Please do an MRI. You can have bulging disks also causing you pain.

Your arm could hurt you cause of your fatigue caused by fibromyalgia but you can get that checked also.

 
Old 04-19-2012, 05:08 PM   #6
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Re: Fybro & non-believer's

It is bad enough coping with the pain but even harder when family don't really know just how you feel. I have a hard time coping because my hubby has survived a heart attack and as he is back to working and feeling fine, he expects me to 'get over it'. I am having a struggle because I feel I can't upset him with his heart trouble so I do all the driving as he hates it, I handle all his medication as he doesn't want to, I have to keep the house clean and also work as a cleaner for 23 hours per week as hubby wants to retire debt free in five years time. I have survived a melanoma so I do appreciate being a survivor but lately I feel like I won't be here when hubby wants to retire. sometimes I wonder 'can FM kill you?' It feels like it!

 
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Old 04-20-2012, 10:03 AM   #7
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Re: Fybro & non-believer's

It does feel like it doesn't it...
They don't understand how hard we work to get through our day. How much work it is to cook or clean when you are exhausted & hurt so bad...
That's wonderful he has recovered so well from such an awful thing! But maybe he needs to realize that his pain & fatigue was temporary & treatable with diet & exercise, medications, ect. But living with fibro, every day is a recovery... We never get well & you need a break.
Retiring in 5 years would be wonderful but you are the one having to suffer those 5 years. You may need to retire early, you may need to file for ssdi. I know it's nothing I'm proud of... I filed when I turned 30 & hoping to get it soon... $ is tight but hopefully once I can get a settlement it is going to be really helpful at catching up, hopefully...
I could feel my husbands disapointment when I filed. He still thinks this is temporary & has no clue. But I did it for me, not him...
__________________
~♥Tori♥~
Fatigue & Derealization (PTSD?) 1999
Hypothyroid~ 2003
Back injury~ 2005
Severe Degenerative Disk, Arthritis, Mild Scoliosis.
Fibromyalgia diagnosed 2009
Neuropathy
Migraines?

 
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Old 04-20-2012, 02:27 PM   #8
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Re: Fybro & non-believer's

I am in Australia and have only one other person I know who also has FM. He is already on disability pension for other reasons. He lives over 1000 kms away but we keep in contact via email. My doctor doesn't know much about FM although he is the one who diagnosed it. Thanks for your thoughts.

Last edited by Luvenyas; 04-20-2012 at 02:28 PM.

 
Old 04-20-2012, 08:56 PM   #9
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Re: Fybro & non-believer's

Luvenyas- For a long time I knew of only one other person that had it. Then I found out one day that an acquaintance we've known for 3 yrs or so had had it for about 20 yrs... We're more friends now lol But there me others you know, just don't know it yet... I may know more people but it's not something we tell many people... I'm amazed how many people have it...
__________________
~♥Tori♥~
Fatigue & Derealization (PTSD?) 1999
Hypothyroid~ 2003
Back injury~ 2005
Severe Degenerative Disk, Arthritis, Mild Scoliosis.
Fibromyalgia diagnosed 2009
Neuropathy
Migraines?

 
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