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Fibromyalgia or CFS?


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Hi,

I'm new to this, so any help is appreciated. I'm in my 40's, marrried, and live in california. I wonder if anybody has had to deal with the topic. I've been diagnosed as having one or both of these illnesses since 1989. I do quite well now, thanks to all of the drugs I'm taking.

Anyone?

thanks,

Mermaid

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Mermaid

Welcome.

What meds are you taking These diseases are auto-immune disorders, right?

I have always been interested in learning more about them, because I knew someone who was dx'ed with fibro-I should read more about them. Glad to hear you are dong well, what made you visit here, if you don't mind me asking? The meds? These illnesses are debilitating, as I remember...just like MI. Glad you are here.

Sylvia

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Hey Mermaid,

I've had CFS for about a year now.  I'm 26, and I'm on the mend, but it's been a slow process. 

What meds do you take?  (I'm always curious to see what helps fellow CFSers)  My list of meds is in my profile in the who are the mods board, if you're curious.

I'm glad you came to stop by.

Anything in specific you want to talk about?

I know CFS can be isolating and frustrating b/c dammit why me and when will it stop and shit i'd like a life again...

hope you keep posting.

Penny

Hi,

I'm new to this, so any help is appreciated. I'm in my 40's, marrried, and live in california. I wonder if anybody has had to deal with the topic. I've been diagnosed as having one or both of these illnesses since 1989. I do quite well now, thanks to all of the drugs I'm taking.

Anyone?

thanks,

Mermaid

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Mermaid

Welcome.

What meds are you taking These diseases are auto-immune disorders, right?

they're not auto-immune.  no one is REALLY sure what causes them, but the best explanation i've had thus far is this.  You have a whole bunch of small things wrong with you.  (For me my adrenals and my thyroid were off and i had a bad reaction to a med.) and your body is REALLY worn down.  and then poof one more thing comes along and your body just doesn't snap out of it.  Common factors is both illnesses are hormonal inbalances (adrenal exaustion is really common,) underlying chronic infections (like UTIs or something,) underlying viral infection, poor diet or poor absorption of nutrients, defeciencies in certain vitamins, not enough/ bad sleep, too much stress, etc. 

which i guess is why they're syndromes.  it's not like every person with CFS or Fibro has the exact same causes... but we all get a clump of symptoms that are the same. 

This is part of why it is so hard to treat... getting to the underlying cause can take a long time.

That and a lot of people (even some doctors) still think it's just a neurotic problem.

Did that help answer your question at all?  Please ask me to elaborate if I wasn't clear on anything.

Best,

Penny

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Penny

I thought at one time that the the medical community linked the same virus that caused mononucleois (sp) with chronic fatigue. I guess I am behind on this one. I know my friend with fibro had many procedures which deadened certain nerve endings, so as she would not suffer so much painful body distress. She finally reeived s.s. disability. You know alot of llnesses which were later linked to viral infections, such as ulcerative colitis and stomach ulcers were once thought to be psychosomatic in nature (i.e. caused by stress). Thanks for the update.

Syl

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Penny

I thought at one time that the the medical community linked the same virus that caused mononucleois (sp) with chronic fatigue. I guess I am behind on this one. I know my friend with fibro had many procedures which deadened certain nerve endings, so as she would not suffer so much painful body distress. She finally reeived s.s. disability. You know alot of llnesses which were later linked to viral infections, such as ulcerative colitis and stomach ulcers were once thought to be psychosomatic in nature (i.e. caused by stress). Thanks for the update.

Syl

some people with cfs have active infections of viruses that people normally get once and get over.  such as mono (epstein bar,) HHV6 and CMV. 

and/or they will have chronic infections.

basically your immune system and body say DEAR GOD PLEASE I'M TIRED LET ME REST.

only you need more than rest.

but, so ... the epstein barr thing isn't WRONG, it's just only one possible peice of a larger puzzle

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Hi Everyone,

thanks for all of your responces.It's alwats great to hear from those who experience it. I was doagnosed woth CFIDS and the nin the past year my doctors think I now have Fibromyalgia. they said that this is common for patients to switch between the diseases. Either way they can be a very isolating disease. I've been through it all over the past 17 years. Have tried many things to get rid of it, and finally realized it's here to stay. I was a competing athlete before and never thought I wouldn't be that for the ret of my life. I haven't yet mastered exercise. I used to love it... now I struggle with it. I am doing quite well though. I go to school full time for Interior Design and do fine with it. I'm able to stay quite busy. The only thing is that if I go through a stressful time in my life, then about 3 weeks later I become more tired, which sucks. This ultimately has tought me to appreciate the small things in life and to slow down. I still tend to over do it, but I can't help it. I have also learned a very important lession in life that more people should try... that is to take good care of my self... mentally and physically. If I don't do this I could relapse. In my heart I don't believe I will, but I also know that it is possible that I might. I do worry about getting older and how this will effect me.

I have tried many different meds over the years. right now I take 6 a day:

synthroid, celexa, welbutrin, and feldene in the am. These support my thyroid, depression (which is hereditary), and muscle/trigger point pain.  At night I take flexaril and trazodone (for muscle relaxation and sleep). Those pretty much take care of the symptome that can be debilatating.

I still struggle to find the right word sometimes and my short term memory pretty much sucks, unless it's something really important to me. I have learned to laugh at it and not beat myself up for not remembering some things. I also have learned to describe the word and it usually causes me to remember it while I'm doing that. If that doesn't work I say "thingy". That covers a lot of territory.

I'm not sure why I started this dialog on the site, but am glad I did. It's great to know of someone else out there who deals with this too. I spent years trying to figure out why I got this and I've never been able to come up with a believable answer, so I gave up focusing on that and just accepted it.

Penny, I've heard of a lot of people who "get rid of it" and never experience it again. Those people tend to get much better over a year or two. I hope that will be you. Obviously thats not me. Try not to get too concerned about that and just live one day at a time. I'm sure you know how much mental stress can such your evergy.

The one thing that I do know is that it is an auto-immune disease, so it can effect every part of you. I've gotta go for now... I'll write more later. Is there any spell check available on this site.

Take Care,

Suzy

Hey Mermaid,

I've had CFS for about a year now.

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