Re: lyme and chronic fatigue FIBRO??

[Guest guest]

I had recently joined a fibromyalgia list. Well I tell ya. I listen to these

people who have just been diagnosed and have never been dx'd with anything

before and they sound ALOT like us.. I feel like screaming people wake up!

This is NOT a disease! but they don't seem to understand that. I think they

think because a doctor tells them it's so then it is. They have all the

symptoms we have even the weird ones and I " m thinking to myself why are

these people accepting this? don't they know this isn't an illness of

itself? Why would you just sit back and say OK I have a disease of fatigue?

Boggles my mind.

-- Re: [ ] lyme and chronic fatigue

<<<<<< I have gotten a CFS, CFIDS as well as fibro Dx and if

you look at these so called " diseases " ? They aren't diseases at all. They

are SYMPTOMS of a disease.>>>

So very true..........and I believe the latest studies are saying that

Fibromyalgia is mostly the result of a sleep disturbance problem.

That sleep problem or disorder could be produced by any number of syndromes,

imbalances, deficiencies and diseases.........including Lyme Disease.

Conniek nwnj

(suffering from a sleep disorder for 10 years)

[Guest guest]

I have Fibromyalgia also and it is very, very, very painful. For me, that gives

us all the time we want to complain and work for solutions and give each other

mutual support.

I've met some good friends through the FM message boards. We exchange

information, the names of doctors and even call each other up when things aren't

going well.

Pain is terrible. I , and many others, live with it each and every day.

Robyn <PrincessRobyn1970@...> wrote:

I had recently joined a fibromyalgia list. Well I tell ya. I listen to these

people who have just been diagnosed and have never been dx'd with anything

before and they sound ALOT like us.. I feel like screaming people wake up!

This is NOT a disease! but they don't seem to understand that. I think they

think because a doctor tells them it's so then it is. They have all the

symptoms we have even the weird ones and I " m thinking to myself why are

these people accepting this? don't they know this isn't an illness of

itself? Why would you just sit back and say OK I have a disease of fatigue?

Boggles my mind.

[Guest guest]

Hi Ed

I'm sorry you're in so much pain and I " m not denying that you are. I'm also

not saying the Fm board isn't a great place to be. What I am saying is that

Pain is not a disease in and of itself. It's a symptom of some kind of

illness and or disease. When one feels pain in the body it's because it's

comming from something either an illness or injury. Pain is not classified

as a disease all on it's own. I am in no way belitteling anyone. Just

stating truth's thats all.

Robyn

-- Re: [ ] lyme and chronic fatigue FIBRO??

I have Fibromyalgia also and it is very, very, very painful. For me, that

gives us all the time we want to complain and work for solutions and give

each other mutual support.

I've met some good friends through the FM message boards. We exchange

information, the names of doctors and even call each other up when things

aren't going well.

Pain is terrible. I , and many others, live with it each and every day.

[Guest guest]

Greetings...I can understand how patients don't understand - I'm having trouble

finding a doctor who understands. I just shared this individually with another

member. I spoke with a friend of mine tonight - she's a doctor, but

not a Lyme specialist. I wanted to hear her point of view regarding Lyme,

especially since she knows me. I told her my symptoms, etc. I was quite

surprised when she told me that I seem to be overly concerned with my body /

health - kind of suggesting that my Lyme is all in my mind. She thought the

symptoms might be generated from me thinking so much about them. I told her

that I'm not imagining diarrhea, swollen glands, low grade fevers, 20 months of

bad " flu " symptoms over the past 3 years, severe headaches, etc. The response I

get from people really makes me want to keep the symptoms to myself - suffer in

silence. But I won't - I'm going to take responsibility for my recovery and get

well - regardless of what anyone thinks. She told me that doctors see Lyme as

the " new Chronic Fatigue Syndrome " - kind of like a " fad " illness - they believe

that Lyme exists, but to a much lesser degree that Lyme literate folks. I found

a local doctor who does Igenex WB tests - I'm having a test done with him

tomorrow, so that I have the results for my appointment with Infectious Disease

doctor who is not LLMD. I'm doing this as my first round; Depending on how this

goes, I've also received LLMD contact information for my next appointment. One

day at a time...Tom

Re: [ ] lyme and chronic fatigue FIBRO??

I had recently joined a fibromyalgia list. Well I tell ya. I listen to these

people who have just been diagnosed and have never been dx'd with anything

before and they sound ALOT like us.. I feel like screaming people wake up!

This is NOT a disease! but they don't seem to understand that. I think they

think because a doctor tells them it's so then it is. They have all the

symptoms we have even the weird ones and I " m thinking to myself why are

these people accepting this? don't they know this isn't an illness of

itself? Why would you just sit back and say OK I have a disease of fatigue?

Boggles my mind.