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HI all......I've been reading the postings with much interest and understand

how each and every one of you feel......in every way! Just thought I'd

introduce myself too.

I'm Riley from New Mexico.

Subject: re: Questionaire

Age range: 50

Male/female: Female

What are the symptoms? Chronic unrelenting pain, major depression, visual

disturbances (4 eye specialists all says it's Fibro related), irritable bowel

syndrome, Migraines, muscle spasms, numbness tingling in hands and feet,

insomnia (for over 15 years), memory problems, Costochondritis attacks,

Restless Leg Syndrome, and fatigue. I suffer from terrible cold chills

constantly. I love in the desert, it's hot!!! But Here I am in sweats and a

heating blanket at 95 degrees outside. There's more, but hey it's early

today! LOL

Has your illness been diagnosed? Yes, but it took 4 years of relentless

searching for a Dr who didn't think I was a hypochondriac or druggie and who

would diagnose and treat the symptoms.

How long did you suffer before you got help? Many years of pain before I

realized there had to be a medical term for what I was going through.

Is there a time that you can remember when it started? Not really. I'm one of

those who have been battered, abused and used since childhood so never really

felt " normal " my entire life.

Some of us have found lack of exercise we are overweight. Have you

found this to be a problem also? I manage to do a stretching routine I

developed using Isometrics daily. I have been overweight for many years.

Ballooning to 267# and now am at 175#. Recently lost 24 pounds due to what we

thought was a heart problem but has left my Drs undecided as to what's really

wrong.

Are you on disability? Yes....amazingly I was approved the 1st time I

submitted for medical disability but they refused me because of too many

assets. One appeal that they take a look at my swindling bank account and I

was approved immediately!

If you are any pointers for others trying to get on disability? One that

I've found from many years of research is that EVERY SINGLE TIME you visit a

Dr......no matter what the reason, inform all personnel that you are there

for Fibromyalgia. That way the 1st thing SSDI sees upon review is Fibro...not

the myriad of complaints that lead them to think we are all nuts. The 1st

word out of my mouth is Fibro....then I tell them why I am there.....where

the pain is this month. LOL I also keep a Pain Diary and a Prescription List

(what works and what doesn't). I've been reviewed twice with no problems now.

What have you found that helps ease the pain, warm baths, medications

, etc.? Nothing, except Prednisone and trigger point injections. I am

allergic to almost every pain or relaxant drug available (believe me, we've

tried them!) so not much help there. The stretching exercises help and I try

to keep busy mentally and physically.

Do you have sleep problems? How do you deal with it? To sleep, perchance to

dream! Oh I wish! I've not had more than 4 hours at a time in the past 15

years.

The fatigue is horrible. I can't nap either. Ugh!

Do you have family that understands your illness? No. One son who cannot

comprehend why his Mother doesn't clean like she used to, or cook, or go

places. Friends get glossy eyed when I try to explain the pain, so I've given

up.

Some have found certain foods causes problems with CFS or Fibro, have

you? No. My Dr keeps suggesting more fruits and veggies but being on SSDI and

a minimal foodstamp existence prohibits buying fresh foods most months.

What type of Doctor have you found that has helped you the most? Actually my

Psych seemed to help the most. He really tried to understand the pain, the

confusion, the problems and would put himself into situations where he could

simulate what I was going through. Sadly, after 3 years he is moving. Now I

am left high and dry and unable to afford any care.

Ok......sorry if I bored anyone. Nice to meet others who understand. :>))

~Riley~

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's Angels Homepage:

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