How many here with Fibro and or CFS?

clueless1959February 5, 2007

My dotter was dx'd with both at the age of 13 What a nightmare the 1st 2 yrs was.

She is now 16 an honor student making almost straight A's taking all weighed classes meaning she taking the hardest classes possible.

VERY ACTIVE in sports plays on the Volleyball, Basketball and Softball teams in school.

Dot has found the more active she is the better she feels plenty of excersise is the key for her along with keeping her stress levels down and staying on her Cymbalta.

She also has a pain disorder along with the Fibro and the CFS and does GREAT as long as she stays on the Cymbalta. She learned a very painful expensive lesson a few months ago when she tried going off her med.

Believe me I never thought I'd see her playing sports or on the honor roll 3 yrs ago that 1st year she was ill was a real nightmare I won't bore you all with the details now.

How do you deal with your fibro and or CFS? What do you find that works for you?

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devorah

My doctor isn't sure if what I have is fibro or lupus. It started when I was 25. I don't have a huge problem with CFS, at least not so bad as many people I know. I think I manage at about 60-75% of normal so I can do most of the things I want to, just not for as long as other people. For years I lived in pain and without much sleep because my doctors said there was nothing to be done. I planned to kill myself once my children were grown and living on their own. But then I became the patient of a rheumatologist who thought pain was reason enough to treat someone. Since I have been on muscle relaxants (Flexeril)I have been able to sleep at night. I was paying a huge amount of money to a massage therapist just to keep me going but it turned out a 3 cent pill was all that I needed. At 59, I wish that I was still working. I haven't brought very much $ into the marriage. Instead I take an exercise class every morning at the senior center, partly to help with pain, but more to keep my blood sugar under control. That amount of exercise pretty much wipes me out. I do the bare minimum of housework and sometimes my husband has to make dinner.

I regret that I was never able to participate in activities such as hiking with my husband and children.

I am so sorry that your daughter is struggling with this so early in life. I know a 15 year old girl who has had to drop out of her high school and be home schooled because she just misses so many days.

    Bookmark   February 6, 2007 at 11:07AM
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clueless1959

devorah

Luckily at this time my dot is not struggling. The 1st 2 yrs was hell tho. She missed more than 3/4ths of Jr high. My very active sports oriented honor student could not lift a plastic cup to take a drink it was to heavy. She could not say her ABC's or count to 5. The tutor school sent out for her in home schooling would show up and a lot of the time we could not wake her up for tutoring. If she did wake up she would forget 5 mins after he left that he had been here. It was a real struggle to keep her awake for her lessons.

Yet this child knew she belonged in school and often tried to go to school at 1 or 2 am because she was late for school or wanted to get there in time. This is while she has the dog on a leash going down a full flight of steps with her pants down around her ankles.

We'd say pull your pants up she would say they are up then we'd say well push them down and THEN they came up. Then we still had to struggle with this very strong 200 lb kid to keep her in the house and not going out the door for school. Often her eyes was not even open she was sleep walking.

Dot could not go to that bathroom by herself she didn't know the tub from the toliet. Argued everytime that the tub was for pottying in and the toliet was for bathing.

Bathing was another story she fell asleep in the shower and tub so I had to sit her in the tub and bathe her. Then it was a real challenge to wake her so I could get her back out of the tub.

Oh it was real scary when she would fall asleep mid step while crossing the street and we couldn't wake her up. HMMMM wonder why we only took her out when we had to.

Then she got to the point she couldn't even walk.

WE finally was able to get dot on a med that works well for her and she's doing VERY VERY WELL now. To have came back the way she has just amazes us. Hopefully she will never have to struggle again like she did in the past.

    Bookmark   February 6, 2007 at 2:53PM
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