Re: New to the list

[Guest guest]

Forgot to mention the sleeping problem! Duh!

> Howdy, I'm Dillion, and I live in Virginia.

[Guest guest]

infonewsbabe wrote:

>Howdy, I'm Dillion, and I live in Virginia. I got my Fibromyalgia Dx

>at the University of Virginia Rheumatology Clinic in 1994. The

>previous year, 1993, I got my MCS Dx at the U. of Va. Allergy Clinic,

>and again in 1995 at s Hopkins University Center for Occupational

> & Environmental Health. When I was 19, I got tossed off a horse, and

>royally hurt myself. That was the start of the Fibro junk.

H Dillion - Good to meet you. I can related to the injuries as

I used to ride more and was more athletic a few years ago.

>I finished college as an independent study, with a BS Psych. I had

>hoped to work, but I have not been able to, and I am on disability.

>Although I have tried to work, there is no way that I can stand the

>pain, the fatigue, and reacting to stuff in the work environment.

>There are no accessible work spaces for me with MCS, and no employer

>has ever given me a fair shake based on ability.

I hear ya.

>Everything is a struggle. I used to be both a martial artist,

>distance runner and a weight lifter. I've had to mourn my former

>life. I have given up everything. I don't even teach hunter

>education, which I really enjoyed. I can't participate in archery. I

>loved archery, esp, the 3-D. My only exercise now is therapeutic

>riding, and it has helped me.

I also switched to Western (my close contact hunt seat saddle and tack is

awaiting my decision to sell) and have a very difficult time playing

tennis for any length of time. I continue to make myself exercise

in spite of the pain skating 3 days a week and either walking/jogging

or tennis or Nordic track on the others.

>My muscles are looser, and my posture

>is better. I have had the best, and the most gentle horses to ride.

Good you are able to ride. Going to do more of that this summer.

>I'm so thankful for mounting blocks,

>because I'm sure it would take me a year to get on a horse the old

>way.

:-) I am 5'2 " and I cannot get on big horses any more either.

I was thinking about after our move getting an Arab or something

small.

>I take SAM-e,

Do you like the SAMe? I just started a few weeks ago and

that along with the Fibro Macic seems to help.

> Co-Q10/Vit. E, Malic Acid, L-Carnitine, Magnesium, B

>Complex, Lutein, a Multi vitamin, Vitamin C, Calcium,

>Glucosamine/Chondroitin, Evening Primrose, Garlic, and Milk Thistle.

The list of stuff I take is in a previous post. I take a lot of supplements

as well. Acupuncture seems to help also. So does massage and my

Shiatsu machine. There is something called a body ball and I have

two with a handle which can be rubbed on muscles or up and down the

spine. That *really* helps with circulation.

>

>I can't take most of the drugs given for Fibromyalgia, and CFIDS.

Me either.

>I have a multitude of food allergies and sensitivities. I have to avoid

>wheat, legumes, tree nuts/peanuts, and a lot more food items. I have

>to buy Organic, or grow organic. I have been struggling with my

>garden this year. I weeded a raised bed last Tuesday, and paid for

>that in pain for a week.

We have a few garnders on the list, myself included.

Glad you found us!

>I can't think of anything else to post.

The amount of things you have to deal with is more than plenty.

Hope you get some relief.

Cheers, Cat

^. .^ ~

" Optimism is magic! "

[Guest guest]

Hi Dillion,

Welcome to the group :-)

> Howdy, I'm Dillion, and I live in Virginia. I got my Fibromyalgia

Dx

> at the University of Virginia Rheumatology Clinic in 1994. The

> previous year, 1993, I got my MCS Dx at the U. of Va. Allergy

Clinic,

> and again in 1995 at s Hopkins University Center for

Occupational

> & Environmental Health. When I was 19, I got tossed off a horse,

and

> royally hurt myself. That was the start of the Fibro junk.

>

> I have been an allergic person all of my life having bizarre

> reactions to everything in the known universe, including

medications.

> I have been allergy tested 3 times, and each time the tests are

> halted, usually due to shock on my part. My brother who is also in

> Virginia has Fibromyalgia, and MCS. He also has sleep apnea. At

least

> he can work, and is completing his degree.

>

> I finished college as an independent study, with a BS Psych. I had

> hoped to work, but I have not been able to, and I am on disability.

> Although I have tried to work, there is no way that I can stand the

> pain, the fatigue, and reacting to stuff in the work environment.

> There are no accessible work spaces for me with MCS, and no

employer

> has ever given me a fair shake based on ability. All they can do is

> focus on my cane.

>

> Recently, the nurse practitioner said that I have MPS, and CFIDS. I

> have degenerative joint disease in at least one hip joint, which

she

> believed started when I had my riding accident. It gets worse, she

> says I'm on the verge of Type 2, so she had had me on the Atkins

Diet

> since March '03, and now the Syndrome X diet (modified Atkins) for

> insulin resistance. My eyes: well, they're not great I have myopic

> degeneration. I have had hypertension for a long time, and

migraines

> all of my life. The Fibromyalgia gave me Restrictive Airway

Disease,

> and my muscles are atropying. Then the MCS has manifested as

Reactive

> Airway Disease. Forget about exercise. It just kills me to do

> anything. It is too hard to move, or get dressed. I'd like to go

back

> to writing, but most of the time my thinking is too fuzzy.

>

> Everything is a struggle. I used to be both a martial artist,

> distance runner and a weight lifter. I've had to mourn my former

> life. I have given up everything. I don't even teach hunter

> education, which I really enjoyed. I can't participate in archery.

I

> loved archery, esp, the 3-D. My only exercise now is therapeutic

> riding, and it has helped me. My muscles are looser, and my posture

> is better. I have had the best, and the most gentle horses to ride.

> I'm happy to say that I dont feel disabled while on a beautiful

> chestnut Thoroughbred gelding. I feel free. Hunter seat training

has

> served me well, and my balance is excellent. But, I struggle to

tack

> up my horse, and usually have to have help doing that. I've had to

> leave the foot cleaning to others. I use Western tack, because

> English saddles are not very supportive. I used to ride English,

back

> when the legs were stronger. I'm so thankful for mounting blocks,

> because I'm sure it would take me a year to get on a horse the old

> way.

>

> I take SAM-e, Co-Q10/Vit. E, Malic Acid, L-Carnitine, Magnesium, B

> Complex, Lutein, a Multi vitamin, Vitamin C, Calcium,

> Glucosamine/Chondroitin, Evening Primrose, Garlic, and Milk

Thistle.

> I can't take most of the drugs given for Fibromyalgia, and CFIDS. I

> have a multitude of food allergies and sensitivities. I have to

avoid

> wheat, legumes, tree nuts/peanuts, and a lot more food items. I

have

> to buy Organic, or grow organic. I have been struggling with my

> garden this year. I weeded a raised bed last Tuesday, and paid for

> that in pain for a week.

>

> I can't think of anything else to post.

[Guest guest]

Hi Dillion,

So glad you found us.

((Hugs))

Janet M.

> > Howdy, I'm Dillion, and I live in Virginia. I got my Fibromyalgia

> Dx

> > at the University of Virginia Rheumatology Clinic in 1994. The

> > previous year, 1993, I got my MCS Dx at the U. of Va. Allergy

> Clinic,

> > and again in 1995 at s Hopkins University Center for

> Occupational

> > & Environmental Health. When I was 19, I got tossed off a horse,

> and

> > royally hurt myself. That was the start of the Fibro junk.

> >

> > I have been an allergic person all of my life having bizarre

> > reactions to everything in the known universe, including

> medications.

> > I have been allergy tested 3 times, and each time the tests are

> > halted, usually due to shock on my part. My brother who is also

in

> > Virginia has Fibromyalgia, and MCS. He also has sleep apnea. At

> least

> > he can work, and is completing his degree.

> >

> > I finished college as an independent study, with a BS Psych. I

had

> > hoped to work, but I have not been able to, and I am on

disability.

> > Although I have tried to work, there is no way that I can stand

the

> > pain, the fatigue, and reacting to stuff in the work environment.

> > There are no accessible work spaces for me with MCS, and no

> employer

> > has ever given me a fair shake based on ability. All they can do

is

> > focus on my cane.

> >

> > Recently, the nurse practitioner said that I have MPS, and CFIDS.

I

> > have degenerative joint disease in at least one hip joint, which

> she

> > believed started when I had my riding accident. It gets worse,

she

> > says I'm on the verge of Type 2, so she had had me on the Atkins

> Diet

> > since March '03, and now the Syndrome X diet (modified Atkins)

for

> > insulin resistance. My eyes: well, they're not great I have

myopic

> > degeneration. I have had hypertension for a long time, and

> migraines

> > all of my life. The Fibromyalgia gave me Restrictive Airway

> Disease,

> > and my muscles are atropying. Then the MCS has manifested as

> Reactive

> > Airway Disease. Forget about exercise. It just kills me to do

> > anything. It is too hard to move, or get dressed. I'd like to go

> back

> > to writing, but most of the time my thinking is too fuzzy.

> >

> > Everything is a struggle. I used to be both a martial artist,

> > distance runner and a weight lifter. I've had to mourn my former

> > life. I have given up everything. I don't even teach hunter

> > education, which I really enjoyed. I can't participate in

archery.

> I

> > loved archery, esp, the 3-D. My only exercise now is therapeutic

> > riding, and it has helped me. My muscles are looser, and my

posture

> > is better. I have had the best, and the most gentle horses to

ride.

> > I'm happy to say that I dont feel disabled while on a beautiful

> > chestnut Thoroughbred gelding. I feel free. Hunter seat training

> has

> > served me well, and my balance is excellent. But, I struggle to

> tack

> > up my horse, and usually have to have help doing that. I've had

to

> > leave the foot cleaning to others. I use Western tack, because

> > English saddles are not very supportive. I used to ride English,

> back

> > when the legs were stronger. I'm so thankful for mounting blocks,

> > because I'm sure it would take me a year to get on a horse the

old

> > way.

> >

> > I take SAM-e, Co-Q10/Vit. E, Malic Acid, L-Carnitine, Magnesium,

B

> > Complex, Lutein, a Multi vitamin, Vitamin C, Calcium,

> > Glucosamine/Chondroitin, Evening Primrose, Garlic, and Milk

> Thistle.

> > I can't take most of the drugs given for Fibromyalgia, and CFIDS.

I

> > have a multitude of food allergies and sensitivities. I have to

> avoid

> > wheat, legumes, tree nuts/peanuts, and a lot more food items. I

> have

> > to buy Organic, or grow organic. I have been struggling with my

> > garden this year. I weeded a raised bed last Tuesday, and paid

for

> > that in pain for a week.

> >

> > I can't think of anything else to post.

[Guest guest]

Cat, thanks for the welcome. For all of May '03, I used to ride a

large 14 hands pony at the therapy center. I had side walkers, until

I got over my fear, and my instructor saw that I could go

independent. I " graduated " to a larger horse, with a molassas gait,

and dead sides. Still, I was an independent, and my teacher said I

could influence this horse to move forward, and control him. His

sides are dead to leg pressure, and my legs get too tired. Probably

the best thing about this horse was how much he treated me like his

friend. He was a big nudge. But he went all psycho at the TRAV show.

At the show, I ended up with a Parelli trained TB, who responded to

the slightest leg pressure. He was a pleasure to ride, and I loved to

move with him. I did very well.

You really should try a mounting block. The Va. Horse Center has some

of the best ones. I don't know what I would do, if I couldn't ride.

I have been taking SAM-e & CoQ10 since the Summer 2000. SAM-e cuts

down on the pain, unless I am in flare. SAMe is great for moods.

CoQ10 helps muscle soreness, and increase O2 to the Mitrochondria.

Recently, I have been reading about ALA or Alpha Lipotic Acid, which

is the master anti-oxidant. I started taking it for Insulin

Resistance after reading Syndrome X by Jack Challem. ALA effectly

recycles the other anti-oxidants, making them work more effectlvely.

I neglected to mention that I use a Theracane. Most of the time it is

too hard for me to drive to AMC where they have a PT who believes in

FMS, and does specific myofascial release massage. Locally, there are

no PTs who believe, so this is very bad. I'm getting to the point

where I can't stand to drive much. What is really awful is how

painful I get on my left side, with that hip (clutch leg). I have

also used Homeopathic Arnica pellets for FMS pain. The time my equine

nudge stepped on my foot, they gave horse Arnica which was a big

dose. Worked real well on pain.

H Dillion - Good to meet you. I can related

to the injuries as

> I used to ride more and was more athletic a few years ago.

>

[Guest guest]

Cat, thanks for the welcome. For all of May '03, I used to ride a

large 14 hands pony at the therapy center. I had side walkers, until

I got over my fear, and my instructor saw that I could go

independent. I " graduated " to a larger horse, with a molassas gait,

and dead sides. Still, I was an independent, and my teacher said I

could influence this horse to move forward, and control him. His

sides are dead to leg pressure, and my legs get too tired. Probably

the best thing about this horse was how much he treated me like his

friend. He was a big nudge. But he went all psycho at the TRAV show.

At the show, I ended up with a Parelli trained TB, who responded to

the slightest leg pressure. He was a pleasure to ride, and I loved to

move with him. I did very well.

You really should try a mounting block. The Va. Horse Center has some

of the best ones. I don't know what I would do, if I couldn't ride.

I have been taking SAM-e & CoQ10 since the Summer 2000. SAM-e cuts

down on the pain, unless I am in flare. SAMe is great for moods.

CoQ10 helps muscle soreness, and increase O2 to the Mitrochondria.

Recently, I have been reading about ALA or Alpha Lipotic Acid, which

is the master anti-oxidant. I started taking it for Insulin

Resistance after reading Syndrome X by Jack Challem. ALA effectly

recycles the other anti-oxidants, making them work more effectlvely.

I neglected to mention that I use a Theracane. Most of the time it is

too hard for me to drive to AMC where they have a PT who believes in

FMS, and does specific myofascial release massage. Locally, there are

no PTs who believe, so this is very bad. I'm getting to the point

where I can't stand to drive much. What is really awful is how

painful I get on my left side, with that hip (clutch leg). I have

also used Homeopathic Arnica pellets for FMS pain. The time my equine

nudge stepped on my foot, they gave horse Arnica which was a big

dose. Worked real well on pain.

H Dillion - Good to meet you. I can related

to the injuries as

> I used to ride more and was more athletic a few years ago.

>

[Guest guest]

Hi Dillion:

Welcome to the group. I am glad you are reaching out and staying

active with the things you can do. I have never been diagnosed so I

have just been trying to cope with the pain and symptoms without

much support. I find it helpful to meet people who understand what

this is like. I hope you do as well.

Best regards,

Star

[Guest guest]

Hi Dillion:

Welcome to the group. I am glad you are reaching out and staying

active with the things you can do. I have never been diagnosed so I

have just been trying to cope with the pain and symptoms without

much support. I find it helpful to meet people who understand what

this is like. I hope you do as well.

Best regards,

Star

[Guest guest]

Dear Dillion,

I sent you an " official " welcome to the list earlier by personal e-mail,

but would like to take this opportunity to do so on-list, expecially

since you gave such a wonderful introductory post.

It would seem that life has indeed dealt you a hard hand to play. Like

you, I used to be active, but that was in my other life b/4 fibro. I

can remember when I used to run at least 5 miles a day, and now it is

very seldom that I can walk even a mile a day to exercise my dogs. I

was forced to give up a very promising career at the Univ. of TN.,

Memphis, just 10 months before being vested in their retirement program.

Thank God I have a DH who helps me more than I could ever tell you.

Without his help, I don't know what I would do.

hugs and prayers,

Sharon - Memphis, TN

Faith...with it, miracles *CAN* and *DO* happen!

[Guest guest]

Thronberry@... wrote:

> I can remember when I used to run at least 5 miles a day, and now it is

>very seldom that I can walk even a mile a day to exercise my dogs. I

>was forced to give up a very promising career at the Univ. of TN.,

>Memphis, just 10 months before being vested in their retirement program.

That is so very frustrating. It is very hard to have been active, want to

be active, but the body does not cooperate. I hear ya. Cat

^. .^ ~

" Optimism is magic! "

[Guest guest]

infonewsbabe wrote:

>Cat, thanks for the welcome. For all of May '03, I used to ride a

>large 14 hands pony at the therapy center. I had side walkers, until

>I got over my fear, and my instructor saw that I could go

>independent. I " graduated " to a larger horse, with a molassas gait,

>and dead sides. Still, I was an independent, and my teacher said I

>could influence this horse to move forward, and control him. His

>sides are dead to leg pressure, and my legs get too tired. Probably

>the best thing about this horse was how much he treated me like his

>friend. He was a big nudge. But he went all psycho at the TRAV show.

>At the show, I ended up with a Parelli trained TB, who responded to

>the slightest leg pressure. He was a pleasure to ride, and I loved to

>move with him. I did very well.

Hi Dillion, Glad to hear about your great success. Horses are the greatest.

>You really should try a mounting block. The Va. Horse Center has some

>of the best ones. I don't know what I would do, if I couldn't ride.

Well for now skating is keeping my sanity :-) Horses next year.

>I have been taking SAM-e & CoQ10 since the Summer 2000. SAM-e cuts

>down on the pain, unless I am in flare. SAMe is great for moods.

>CoQ10 helps muscle soreness, and increase O2 to the Mitrochondria.

>Recently, I have been reading about ALA or Alpha Lipotic Acid, which

>is the master anti-oxidant.

I'll look into that. Thanks for mentioning it.

I was taking Kava Kava, but stopped for a few days, I am not sure whether

that is what was making my palms so red.

>I started taking it for Insulin

>Resistance after reading Syndrome X by Jack Challem. ALA effectly

>recycles the other anti-oxidants, making them work more effectlvely.

Great . . . I had some insulin resistance and blood sugar problems, but

5 months of acupuncture significantly improved that, but I am always

looking for new supplements as they are getting better each year. :-)

>I neglected to mention that I use a Theracane. Most of the time it is

>too hard for me to drive to AMC where they have a PT who believes in

>FMS, and does specific myofascial release massage. Locally, there are

>no PTs who believe, so this is very bad.

People who don't believe in FM seem to be in the majority.

>I'm getting to the point

>where I can't stand to drive much. What is really awful is how

>painful I get on my left side, with that hip (clutch leg). I have

>also used Homeopathic Arnica pellets for FMS pain.

That pain is the tough part. I have used arnica gel and it doesn't last

very long. Hope that works for you.

>The time my equine

>nudge stepped on my foot, they gave horse Arnica which was a big

>dose. Worked real well on pain.

Great. Mabe I need *more* !

I am going to try to do some riding this

summer. I have a friend who does cross country eventing and I told her

I want a *safe* horse in my old age . . . I will be 55 in June and I cannot

afford any more falls at this point in my life. Falling on the ice is a no-no

for me, I cannot imagine what would happen off a big horse.

Good to met another horse lover. Cheers, Cat

^. .^ ~

" Optimism is magic! "

[Guest guest]

infonewsbabe wrote:

>Cat, thanks for the welcome. For all of May '03, I used to ride a

>large 14 hands pony at the therapy center. I had side walkers, until

>I got over my fear, and my instructor saw that I could go

>independent. I " graduated " to a larger horse, with a molassas gait,

>and dead sides. Still, I was an independent, and my teacher said I

>could influence this horse to move forward, and control him. His

>sides are dead to leg pressure, and my legs get too tired. Probably

>the best thing about this horse was how much he treated me like his

>friend. He was a big nudge. But he went all psycho at the TRAV show.

>At the show, I ended up with a Parelli trained TB, who responded to

>the slightest leg pressure. He was a pleasure to ride, and I loved to

>move with him. I did very well.

Hi Dillion, Glad to hear about your great success. Horses are the greatest.

>You really should try a mounting block. The Va. Horse Center has some

>of the best ones. I don't know what I would do, if I couldn't ride.

Well for now skating is keeping my sanity :-) Horses next year.

>I have been taking SAM-e & CoQ10 since the Summer 2000. SAM-e cuts

>down on the pain, unless I am in flare. SAMe is great for moods.

>CoQ10 helps muscle soreness, and increase O2 to the Mitrochondria.

>Recently, I have been reading about ALA or Alpha Lipotic Acid, which

>is the master anti-oxidant.

I'll look into that. Thanks for mentioning it.

I was taking Kava Kava, but stopped for a few days, I am not sure whether

that is what was making my palms so red.

>I started taking it for Insulin

>Resistance after reading Syndrome X by Jack Challem. ALA effectly

>recycles the other anti-oxidants, making them work more effectlvely.

Great . . . I had some insulin resistance and blood sugar problems, but

5 months of acupuncture significantly improved that, but I am always

looking for new supplements as they are getting better each year. :-)

>I neglected to mention that I use a Theracane. Most of the time it is

>too hard for me to drive to AMC where they have a PT who believes in

>FMS, and does specific myofascial release massage. Locally, there are

>no PTs who believe, so this is very bad.

People who don't believe in FM seem to be in the majority.

>I'm getting to the point

>where I can't stand to drive much. What is really awful is how

>painful I get on my left side, with that hip (clutch leg). I have

>also used Homeopathic Arnica pellets for FMS pain.

That pain is the tough part. I have used arnica gel and it doesn't last

very long. Hope that works for you.

>The time my equine

>nudge stepped on my foot, they gave horse Arnica which was a big

>dose. Worked real well on pain.

Great. Mabe I need *more* !

I am going to try to do some riding this

summer. I have a friend who does cross country eventing and I told her

I want a *safe* horse in my old age . . . I will be 55 in June and I cannot

afford any more falls at this point in my life. Falling on the ice is a no-no

for me, I cannot imagine what would happen off a big horse.

Good to met another horse lover. Cheers, Cat

^. .^ ~

" Optimism is magic! "

[Guest guest]

Hi Everyone,

Does anyone know of a good doctor in the Minneapolis/St. , Minnesota

area for vulvodynia? I will be moving there this summer and am worried that

I won't be able to find a doctor that can treat me. I would appreciate any

help.

Thanks,

Aimee DuBois