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mrs mac
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just wondering
« on: Apr 12th, 2004, 7:28pm » |
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hey guys, newbie over here from the other side of the pond!!
does anyone suffer from fibromyalgia as well as CH??
Just wondered, as Andy has both and not sure if there could be any connection??
sandra
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Lizzie2
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Re: just wondering
« Reply #1 on: Apr 12th, 2004, 7:33pm » |
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I do suffer from fibro, but I don't think there is a connection between fibro and CH? Not sure. There have been numerous studies on the connection of fibro and migraine. Take care!
Lizzie 
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HypnoticFreddy
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Hi Lizzie and Sandra,
What is fibro like?
-Freddy
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| « Last Edit: Apr 12th, 2004, 7:35pm by HypnoticFreddy » |
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Lizzie2
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Re: just wondering
« Reply #3 on: Apr 12th, 2004, 7:39pm » |
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Here's a website Freddy:
http://www.fmnetnews.com/pages/basics.html
The main thing I have learned about it is at least a certain number of trigger points in the body where it feels like you have something hard and crunchy in the points. They hurt really bad and can cause pain in other parts of the body as well (referred pain). For example, I have a few on the front of my shoulder that cause pain to radiate down my right arm.
The treatment I have for fibro is lidocaine patches, nerve block injections in trigger points, muscle relaxants, etc.
I also got a laptop so that I didn't have to sit at a desk, as doing so is not possible for me. It causes too much pain to sit in one position. With the laptop I can move around or sit in different positions while working. This has helped me deal with it a little bit better.
Take care!
Lizzie
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HypnoticFreddy
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Thanks Lizzie,
I am going to go check out the site.
You know...This guy I work with sits on a ball. One of those physical therapy balls.
He looks little strange, but I think it may be helpful for his back.
Talk to you soon.
-Freddy
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mrs mac
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Re: just wondering
« Reply #5 on: Apr 12th, 2004, 7:46pm » |
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thanks for the replies!!
As i said, i was just curious, Andy has had fibro for quite a few years, but the CH is a recent addition!!! (as if he didn't have enough to deal with)
Any way speak to you guys later
tc pfdan
sandra
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HypnoticFreddy
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Lizzie,
I just read the website and it sounds pretty awful. I never heard of lidocaine patches. Of course I have heard of the nasal form for clusterheadaches.
Now does your form give you the chronic fatigue syndrome? I ask because I am on the Topamax and it is definitely causing fatigue.
-Freddy (ok enough Scott)
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| « Last Edit: Apr 12th, 2004, 7:47pm by HypnoticFreddy » |
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floridian
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There is a likely connection - serotonin. 5-htp is the immediate precursor of serotonin. It has been shown to help with fibromyalgia, and I think it helps with clusters as well - among other things, increasing serotonin will usually increase melatonin levels. I get disturbed sleep that starts a few weeks before my summer CH episode. By taking a 5-htp during the day and melatonin at night, I can pop my sleep cycle back to something closer to normal.
Not sure if your Big Brother allows 5-htp or tryptophan (the amino acid that is required for the body to produce serotonin) to be sold as an over the counter supplement - here in the U.S., 5-htp is widely available, but tryptophan is not. There is a milk protein (beta-lactalbumin) that is high in tryptophan, and adding this to the daily diet was shown to boost blood levels of tryptophan and improve anxiety levels in one study. I don't think any government limits the sale this milk protein, but you might have to buy it in large amounts - there are two companies in France that produce this.
Don't mix 5-htp or tryptophan with SSRI drugs (or any anti-depressants). It could cause serotonin syndrome. 5htp seems to be fairly safe for short term use, but long term effects are not as well studied.
If you also have frequent diarrhea or other signs of irritable bowel syndrome, check for fructose intolerance or lactose intolerance with a restricted diet. These conditions result in low absorbtion of tryptophan from food, and can cause or aggravate many diseases associated with low serotonin.
http://fibromyalgia.ncf.ca/5htp.htm
http://www.prohealthnetwork.com/library/showarticle.cfm/id/3130/T/Both/
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| « Last Edit: Apr 12th, 2004, 10:32pm by floridian » |
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Lizzie2
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Re: just wondering
« Reply #8 on: Apr 13th, 2004, 8:24am » |
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Hi Freddy,
It can be very disabling, but it does have periods of flare up and remission. The lidocaine patches slowly diffuse lidocaine into the affected pain site, and it helps to loosen my muslces. For instance, the other day I had a flare up in my right arm. It was to the point where I couldn't hold a hairbrush in my hand, so I put a patch on for about 4 hours, and I gradually got back the ability to do things with that hand.
I don't know about CFS, for me...CFS is a very complex disease which involves some different things than FM. After my last hospital stay, I was supposed to make a follow up appointment with the rheumatologist because my diagnoses were wide and not very clear. (fluid on knees, fibromyalgia, raynaud's phenomenon, and polyalgia of some sort?) I never went back to the rheumatologist, though because at that point I was sick of doctors and sick of diagnoses being thrown in my face for various things!!
When I was first diagnosed with FM, my doc put me on prozac to go along with floridian's statements about the serotonin. Prozac really messed with my personality and mood and also made me shake all the time, so I wound up going off of it after 6 months.
FM, for me, only reaches the point of being completely intolerable once in awhile. When it does flare up, it can hurt very badly, but I have learned some technicques to cope with it so that it doesn't hold me back too much! 
Lizzie
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