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Fibro and work
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fibromom2 posted:
My daughter (19) was diagnosed about 2 years ago and we are struggling with how to deal with the realities of living with this debilitating disease. My daughter suffers from the dizziness that we've recently learned can also be a symptom of FM, so she cannot drive and is reluctant to go anywhere by herself in case she has a severe attack. She had to drop out of college and she lost her job in retail. The idea of being financially dependent on anyone is very depressing to her as is the isolation that she experiences--no one understands or wants to hear about someone else's pain.
I want to be able to give her some hope that there is more in her future than pain and pills, but there wasn't a chapter on FM in the "mom handbook". I'm stumped for suggestions on things she could do to support herself that would allow her to work at her own pace (as I've read from so many of you is very, very important in managing your pain & fatigue). I could use some insight from those of you living with FM on the type of work that you do that allows you to work at your own pace.
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uschi66 responded:
Hi My daughter is 19 and has been diagnosed with fibro just 2 months ago. She had an inflammation in her jaw joint due to constant jaw clenching. her consultant suspected she has fibro, referred her to a rheumatologist and his suspicion was confirmed. I suffer from fibro, too, although much worse than she does at this time. There is clearly a hereditary link, she is taking amitryptilin which has improved her sleep a lot. Before she was able to sleep roughly 5 hours. She has problems concentrating for longer periods, fatigue affects her during the day and she has spells of vertigo. Attempts to multitask usually dont produce great results... Her joints are weak and she had quite a few sprains in most of her joints! She's dyslexic on top of it all. Having said all of this, she's a wonderful girl who really enjoys life and who learns from her experiences, be they good or not so good.

How is your daughter doing? How does she cope with be challenges and does she have any coping strategies? My daughter does not want to talk much about fibro although she most likely notices how I cope with it. I walk with a stick, have a disabled parking permit, go to a support group once a month. Pain and fatigue for ced me to give up work. But, I have great mental strength and a good sense of humour, both of which really help. I've learned to do things much slower, don't multitask but try to focus on my action, and try to rest before my activity tires me out. But your daughters situation is different as she is at the start of her own independent life which is frustratingly hampered by fibro! How do you cope with this frustration and disappointment? How are you trying to support her? How are both of you keeping your spirits up? Chat soon all the best
 
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dollbug replied to uschi66's response:
Hello to both of the parents who posted here.....MiMi in NC.....it is sad that these young women are so very young and have been blessed (or cursed) with the wrath of the dragon....I am sure though that there are *tools* that will help them cope better....

I do hope that they both have asked the doctor to check their Vitamin D level....which is important to a lot of people these days...low Vitamin D can cause some of us to have additional pain and it can also affect other illnesses as well.

I am now 60 and I have been coping with this ugly illness since 2005....I have had all sorts of other health issues as well...and it has not been an easy journey at all...I wish I could provide some good info on how these young women can be independent...I worked in a bank for most of my life and then worked in a loan servicing company for over 14 years right before I got this. I was able to multitask in my last job and worked on a computer the entire time I was there.

In the beginning it was really hard....as I had other health issues to deal with and could not find the solutions of what could be done about them as well....I do know that each of the health problems that I encountered had to be *addressed* before I finally got better. My doctor was only treating me for depression and I was not getting any better.

I ended up and had parathyroid surgery, cervical (neck) surgery and multiple carpal tunnel surgeries and elbow surgery.....and finally got to a point where I could then cope better with the FM pain. So you see some of us FMers do have multiple health issues, although I am sure that some seem to think that all of it is actually FM, when it just might be something else.

Having a good doctor who understands and treats FM is very important....these doctors will rule out other illnesses first...

I think it is great that both of you, as parents, are trying to learn more about FM and ways that you can assist these young women with things that perhaps they can do that will help them cope better. You have found a unique FM support group that will offer a lot of support here.....please check out the info under *tips* and *resources* that you will find to the right of this page.

We, FMers, are all different and what helps one, may or may not help another. It does take a trial and error process to find the right combination of tools and tips that might work for them. But they will have to find what helps them cope better.

I am one of the FMers here who has learned how to control my FM pain by taking vitamins and supplements and doing other things as well....using a heating pad is good...drinking plenty of water every day...eating right...doing gentle exercises and/or stretches daily also helps...(we have to keep moving since staying in one position too long makes the pain worse) ...

Getting enough sleep and rest is also important and keeping the stress level at bay is also a must for me...(this is probably the hardest thing for me to do)...

Taking a hot shower at night using lavender bath salts right before going to sleep also helps my body to relax better.....

I hope this will be a start for them both to use.

Again, welcome....and be sure and tell your daughters about this site.

Take care and good luck.



MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..


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