My daughter has been diagnosed with chronic fatigue syndrome/ fibromyalgia. Several questions: are they one in the same, are there any good web sites to look over? Also, when she was young she was abused/molested over a several year period. She has had a hysterectomy as well. Is there a connection with this condition? We can’t get a straight answer from the doctors, except, that is her condition…determined after MS was ruled out. Any suggestions would be appreciated.
Chronic fatigue syndrome/fibromyalgia...
by Quentin 18 Replies latest watchtower medical
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Jordan
My mum's been diagnosed with CFS and more recently I've heard her use the term fibromyalgia. Unfortunately she doesn't like talk very much about it. To my knowledge she hasn't had hysterectomy, sorry I couldn't be more helpful, I'll try and find out if there are any books she can recommend.
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Alleymom
Quentin ---
I'm sorry to hear that your daughter is ill. CFS and fibromyalgia overlap quite a bit, but not everyone with CFS has fibromyalgia. Our daughter was extremely ill with CFS in high school and college, but she has made real improvement. There are so many web sites out there now that weren't available ten years ago. You might want to look at Dr. Teitelbaum's site:
https://www.endfatigue.com/home.nsf
He is one of the biggest names in CFS circles.
Supplements and dietary changes can help, along with gentle exercise and a regular routine, but it's a slow process with a lot of ups and downs. Our daughter really did much better after seeing a natural/alternative medical practicioner who urged her to eliminate wheat, dairy, and sugar from her diet.
Some people with CFS also have a certain kind of hypotension that shows up with a tilt table test. Their blood pressure may be perfectly normal most of the time, but will drop at other times. This is called neurally mediated hypotension. The researchers at Johns Hopkins were the ones who were looking into this some years ago. They told CFS patients who also had NMH to go on a high sodium diet to help support the adrenal system. But I think that this has not been as promising as originally hoped.
I haven't kept up with the CFS research because our daughter is grown now and she does her own reading. But I think a lot more is known now than when our daughter became ill. It was in the public eye quite a bit a few years ago when Seabiscuit was on the best seller lists (the author has CFS and she gave a lot of interviews telling about her experiences.)
Wishing your daughter all the best!
Regards,
Marjorie -
glitter
I've had M.E. (Chronic Fatigue Syndrome) since I was 14. I haven't heard of a specific link with hysterectomies; the majority of people seem to get it after viruses, but I suppose feeling run-down in any way could trigger it off.
Don't give up looking for good doctors - I have been lucky, having great doctors from my pediatrician right through to seeing an infectious diseases specialist now.
I don't really go on any M.E.-related websites, but try the M.E. Association and Action for M.E. -
Lady Lee
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Cellist
I don't know about CFS, but fibromyalgia is thought to be possibly triggered by stress, illness or injury.
Cellist
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searcher
fibromyalgia information.
http://www.fmnetnews.com/pages/ptsbrochure.htm
Chronic fatigue syndrome information. -
BrendaCloutier
Quentin. I am so very sorry your daughter has developed this "syndrome". I call it a pain in the arse and everywhere else!
I have CF and FibroMyalgia.
As someone else said, they tend to overlap, if not actually be two sides of the same "syndrome" where one person develops and succumbs to the fatigue, and another develops and succumbs to the pain.
I was first diagnosed in 1996 with Chronic Fatigue Syndrome and FibroMyalgia symptoms, but it was, and mostly is the fatigue that gets to me - then and now. However, the pain has become more and more a factor as I've gotten older, and at times it can be unbearable.
There are no cures. But the good news is that it is not deadly, except for suicide from depression.
Cutting out soda pop, especially diet soda, pre-processed foods, junk food, and balancing meals with fresh or freshly cooked veggies, fruits and meats has helped me a lot.
Common with CFS/FMS is sleep disorder. I also have symptoms of Restless Leg Syndrome: without medication I play soccer through the night!
Sadly, I can no longer hold down any job. I even had to give up a thriving home sewing business because of the pain. Finally, after 2 years 8 months of frustration I won Social Security Disability the end of August. It will still be another month to 6 months before I see any dollars from them.
The thought is with FMS and CFS that some traumatic even triggers most cases. I can trace the beginnings of mine back to leaving my 2nd husband who was violent and abusive, and during the time I was working on the leftover PTSD from it. But it took another 4 years for it to fully develop into the disabling condition I've been dealing with since 1996.
One of the current theories is that the pain center in the brain, for whatever reason, sends out false pain signals that are picked up by specific and other tender points in the body and reflected as real pain. It's sort of like Phantom Limb Pain Syndrome - the pain felt in a limb that has been removed.
Narcotics, though helpful on a short-term use, are not beneficial long-term as the body builds up an immunity to the meds and the pain comes through anyway.
I'm on Effexor XR (timed release) antidepressant with epinephrine reuptake inhibitor. It has been useful in both depression and pain management without the weight gain side effects that other antidepressants have. I take Clonazapam (Klonapin) at night for better more relaxed sleep... it keeps the soccer ball away ;). 2 benedryl to help with falling asleep. Tylenol and Aleve as needed - usually 1 or 2 times a day. Midrin for the FMS migrains I get. Much less expensive than Imetrex, and works better for my type of headache.
My doc has tried several other meds that have worked with varying effect on FMS patients, but not for me.
Best I can say is find a good rheumatologist with strong FMS/CFS background. Naturopathy is a good adjunct to Allopathic (regular) medicine, but again, find someone with background in FMS/CFS, otherwise they will be on a goosechase.
Your daughter is welcome to email me blcloutier at yahoo.com
Hugs and the best!
Brenda
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Quentin
Thanks for the info everyone. I'll pass it along.
Brenda, I'll encourge Staci to e-mail you. What you described about yorself is exactly what she is experincing, soccer leg, pain, sleep loss, fautige all of it. I think it would be good for her to have contact with someone who has been there, done that, so to speak.
Again thanks everyone.
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BrendaCloutier
Quentin, I look forward to hearing from her.
Hugs
B