To: Lois Re: Just diagnosed with FM

[Guest guest]

Dee,

How am I coping with CFS? The short answer is ³not very well².

I have always been very healthy (and I did appreciated my good health and

agility) worked out regularly and ate well. And lived a fairly stress free

lifestyle...I am having a tough time realizing that I have an incurable and

little understood disease. Nothing in life prepared me for this.

Things that I have tried that did not work: acupuncture, chiropractic,

shiatsu, Reiki, positive thinking, vibration therapy, magnet therapy, Red

Bull, supplements du jour, special diet (avoiding dairy, coffee, wheat,

etc) and denial. Probably forgot a few. Sure wished that I had saved my

money!@#

What worked (to some extent): omega 3 fish oil, B12 hydroxycoboliamine

injections, massage for my myofascial pain, Valtrex (depending on amount and

length of time that I took it how long the results lasted) and a quiet life

style. No more late parties or doing very much gardening. Dinner at home

with my husband and a good video is a good week end that I can cope with.

Oh, yes, my trusty little sleeping pills.

Last summer I went to a CFS doctor in NYC and she prescribed Valtrex (which

had worked in the past) along with gamma globulin injections which nearly

killed me. I can only guess what was going on in my body but one thought was

that I was having a hexheimer reaction. All I could do was personal hygiene

and lie in bed waiting until 10pm when I could take my sleeping will. Could

not eat, watch TV. Talk on phone or read. I have improved somewhat but

definitely worse off that before I went to NYC.

On Dec. 17 my husband (the saint who understands and supports me) and I will

drive from Boston to Philadelphia to try out the Fibro and Fatigue Center.

That¹s it for now.

Lois