Re: Am I alone?

[Guest guest]

Hi ,

I know how you feel I also have been dignosed with Endometriosis &

ME/CFS/FMS. My own experiences with Dr's are similar to yours, when all else

fails blame the patient.With Endo there is the objective proof so it cant be

denied like ME/CFS/FMS. I was recently told by my husbands cousin that a

sister of hers who suffers from Rheumatoid Arthritis is told regularly by

her Rheumatologist that her Liver won't doo if she doesn't give up the drink

despite the fact that this woman is a teetotler all her life & the Dr knows

that her liver problems were triggered by her Meds. I know what I would do I

wouldnt let it go with him but I suppose when you are dependent on the Dr

with a disabling condition like that you learn to keep quite. I know I

myself have to thread carefully with my Gyne as Ireland is a small country &

I am dependent on him to prescribe Meds as I want to avoid a Hysterectomy as

long as I can. I am curious about what is meant by the weight requirements

of " a typical Fibromyalgia patient " ?

Regards

Geraldine

Am I alone?

> Hello everyone I am pretty new to the group and feeling a little

> frustrated tonight so I figured I would come to you all again for some

> advice since so many helped answer some questions the other night.

>

> I was diagnosed about 4 years ago with fibromyalgia and have been out of

> work for 4 years due to falling asleep at the wheel, my symptoms are most

> likely the same as most of the group I have extreme pain, sleep almost non

> stop, I have sleep apnea, confused etc. My new PCP has just told me that

> she wants me to see a phychologist also I explained that yes I feel a bit

> depressed but I think its due to the situation and how its changed my life

> so much, she disagrees I dont think she believes in fibromyalgia but I

> cant change drs due to the insurance and my husband insurance wont pick me

> up because all the pre existing crap.

[Guest guest]

Dear ,

No, you are not alone.

It took me almost 20 years to get a diagnosis! For most of that time, after

getting a bad 'flu while in England in 1976, I was only ill intermittently.

By 1987 I could barely get out of bed, however, but continued to work

because I had to. My symptoms were those of CFS--'flu-like. I didn't have

all the muscle aches that are associated with fibromyalgia until 1993 0r

1994.

I too knew that my illness was " real " but the doctors made me think it was

in my head and I began to wonder. Other than that one 'flu and trouble with

my tonsils, I'd never been ill--worked 50-60 hrs. per week at a job I loved

and raised my son, helped care for my disabled sister, etc.

In 1994 I was diagnosed by Dr. Bruce , a rheumatologist at Cedars

Sinai in L.A. and Dr. Hart Cohen, a neurolgist at the same hospital. After

that, I had the great good fortune to be able to see Dr. Cheney, who

ran tests that showed the illness was physical--stress tests, etc. Those

tests proved I was not a malingerer, but functioning at 50% of what a

" normal " woman my age would be able to do.

On the basis of those diagnoses and Dr. Cheney's tests, I was able to get

Soc.Security disability in 1997. I was lucky to get a good lawyer and a good

judge. I was 49 yrs. old and well-educated. That was in California. Where

are you? It might be worth your while to find another attorney. See if you

can ask for a postponement until you do find a " good one " . They ARE out

there. If you do not have to work outside the home, my own recommendation

would be for you stay home for now and take as much care of yourself as you

can. Trying to work and care for your family, etc. may just hamper your

recovery. But, of course, you have to be the judge of that.

My own belief is that continued stress in my life weakened me...or else I

would have been able to recover. Also, I kept pushing myself, thinking that

if I just kept trying, I'd get better. Now I believe that if I'd had an

earlier diagnosis I might have learned to pace myself instead of pushing and

" crashing " . Of course, I don't know. But I do know that my life is more

manageable now.

As others have suggested, meditation and self-hypnosis have benefitted me.

You might find a therapist who uses hypnosis and can teach self-hypnosis to

you.

None of this answers your question. My only tentative advice would be to see

the psychotherapist if the insurance pays for it. You might find one who

understands fibro--I did. Just being able to talk about my frustration and

grief helped. Also, cognitive therapy helped me learn how I was often

defeating myself. It doesn't cure the illness, but it helped me learn to

deal with it--and myself. If the therapist agrees that any depression

results from the illness, and doesn't cause it, that could also help your

case.

What helped me most was changing my diet, taking supplements, and learning

to pace myself. I have not recovered but I have much less pain and I am

seldom depressed. I know that the depression followed my years of

illness--it didn't precede them.

There are good, understanding doctors out there. It took me a long time to

find them, but I did. Hope this helps a little...

All the best,

Theresa ,now in Tennessee

[Guest guest]

Hi -

Not sure where you are located- it has taken me a couple years and I have an

excellent FM rheumy- if you are not from my area then maybe I can give you his #

and maybe they can refer you to someone in your area.

Back channel me if you'd like.

Wanda in Upper State NY

lisa Orr wrote:

Hello everyone I am pretty new to the group and feeling a little frustrated

tonight so I figured I would come to you all again for some advice since so many

helped answer some questions the other night.

I was diagnosed about 4 years ago with fibromyalgia and have been out of work

for 4 years due to falling asleep at the wheel, my symptoms are most likely the

same as most of the group I have extreme pain, sleep almost non stop, I have

sleep apnea, confused etc. My new PCP has just told me that she wants me to see

a phychologist also I explained that yes I feel a bit depressed but I think its

due to the situation and how its changed my life so much, she disagrees I dont

think she believes in fibromyalgia but I cant change drs due to the insurance

and my husband insurance wont pick me up because all the pre existing crap.

[Guest guest]

Thank You

I am in Florida

Wanda Finney wrote:

Hi -

Not sure where you are located- it has taken me a couple years and I have an

excellent FM rheumy- if you are not from my area then maybe I can give you his #

and maybe they can refer you to someone in your area.

Back channel me if you'd like.

Wanda in Upper State NY

[Guest guest]

Basically what was said to me, is that my weight is too low and that is not

something in my favor when going to court

Geraldine O'Sullivan-Hogan wrote: Hi ,

I know how you feel I also have been dignosed with Endometriosis &

ME/CFS/FMS. My own experiences with Dr's are similar to yours, when all else

fails blame the patient.With Endo there is the objective proof so it cant be

denied like ME/CFS/FMS.

[Guest guest]

Hi , Hmm, I guess cause most of us gain weight, but not everyone does, so I

would think that shouldn't have been a factor....

Jeanette French

Re: Am I alone?

Basically what was said to me, is that my weight is too low and that is not

something in my favor when going to court

[Guest guest]

ville area

Maddox wrote: - where in Florida - I grew up

in Orlando and still visit my parents there

M

[Guest guest]

I am not sure lol, just seems there is a road block no matter which way I turn

I will just patiently wait and see what happens at the hearing.

Jeanette French wrote:

Hi , Hmm, I guess cause most of us gain weight, but not everyone does, so

I would think that shouldn't have been a factor....

Jeanette French

[Guest guest]

I started losing weight about five years ago--my metabolism seems to have

change. Before that, if I ate a bite of anything it seemed to translate into

a pound. Now I struggle to put on weight...This is just a very individual

illness.

(I don't like to say this, but some doctors consider CFS as a 'wasting

disease " ...usually happens after one has been ill a long time...that seems

to be the case with me.)

Re: Am I alone?

> Basically what was said to me, is that my weight is too low and that is

> not something in my favor when going to court

[Guest guest]

Hi ,

Good Luck at the hearing.

Jeanette French

[Guest guest]

Hi Theresa,

Wow, I kinda wish my weight was to low...mine is to high. I can see the wasting

away of my muscles, but I think it is from inactivity, not the illness.

Jeanette French

Re: Am I alone?

I started losing weight about five years ago--my metabolism seems to have

change. Before that, if I ate a bite of anything it seemed to translate into

a pound. Now I struggle to put on weight...This is just a very individual

illness.

[Guest guest]

Jeanette--

I used to gain weight so easily. I'm sure a lot of my muscle deterioration

is due to lack of exercise. But the inability to put on weight seems to be a

different thing...

Theresa

Re: Am I alone?

> Hi Theresa,

> Wow, I kinda wish my weight was to low...mine is to high. I can see the

> wasting away of my muscles, but I think it is from inactivity, not the

> illness.

> Jeanette French

[Guest guest]

Theresa-

It's funny you mention weight. When I was first dx'd with CFIDS, everything

I read stated people gained up to 50 lbs. In the last year or so, I've read

just the opposite. I am in the first group, I've gained (and lost and gained)

about 35-40 lbs in the last 6 years. It's frustrating because I have no

appetite and have to think - Jane, you gotta eat something! I used to be very

active (like I'm sure most of us were) and now it's like everything I eat, goes

straight to fat, I'm not burning it up at all. I can't walk anymore, riding my

bike is only a dream, swimming.............someday!

Theresa Schroeder wrote: Jeanette--

I used to gain weight so easily. I'm sure a lot of my muscle deterioration

is due to lack of exercise. But the inability to put on weight seems to be a

different thing...

[Guest guest]

Hi, Jane--

I'm only 5' tall and small boned, so even when I was younger and healthy , I

never weighed more than 100 lbs. (except when I was pregnant..). But ten

years ago I was a size petite 6--now I'm a size 2. My appetite varies a

lot--mostly having to do with how tired I am. If a meal appears before me I

can usually eat it. But otherwise I have little appetite. I find that if I

eat one meal a day, that's enough. I have learned to eat breakfast...but

then I rarely get hungry. And yes, if I do manage to put on a couple of lbs,

it's only flab...I can walk if I'm careful...concrete floors or sidewalks

are killers. An easy path in the woods would be ideal..but then I'd only be

able to walk for a short distance, maybe a few times/week. I got a rebounder

last month but have only used it for a total of about five minutes! But I

will :>)

Theresa

Re: Am I alone?

> Theresa-

> It's funny you mention weight. When I was first dx'd with CFIDS,

> everything I read stated people gained up to 50 lbs. In the last year or

> so, I've read just the opposite.

[Guest guest]

Theresa,

I'm built completely different, I'm 6' tall and large boned, but I was always

very thin. After 3 kids, I put on some weight, but nothing to get too excited

about. I'm now 43 and 40 lbs overweight? at least in my eyes. I hardly ever

eat, becuz, like you, I have no appetite. The weight should just be falling

off, but alas, NO. LOL...oh well, could be worse. We just have to stay

positive, believe we will have more good days than bad in the future. Right?

Jane

Theresa Schroeder wrote:

Hi, Jane--

I'm only 5' tall and small boned, so even when I was younger and healthy , I

never weighed more than 100 lbs. (except when I was pregnant..). But ten

years ago I was a size petite 6--now I'm a size 2. My appetite varies a

lot--mostly having to do with how tired I am.

[Guest guest]

I'm 5'6 " , medium bone structure but amply endowed up top. In high

school I was hourglass shaped ... 37-25-36 ... and 115 lbs. The day

after my first child was born, I weighed in at 118 lbs. It was twelve

years before I had my next child, and my weight had pretty much

stabilized at 135 ... cushy, but not difficult, and nothing special done

to maintain it. In the past five years, however, with medications for

fibro., I cannot get my weight below 170, no matter WHAT I try. I've

not overly much appetite ... I usually eat very little for dinner,

almost never have lunch (and when I do, I don't eat dinner), and very,

very rarely have any breakfast beyond coffee ... sometimes a bowl of

shredded wheat. As for snacking, I nibble sunflower seeds (in shell ...

a habit I picked up to replace smoking), and have a bag of popcorn once

a week ... usually instead of dinner. Some of the medications are known

for weight increases, so that may be the issue. As for appetite, its

definitely lessened.

Peri

[Guest guest]

Hi all:

I am only 4'11 " , and I am way over weight. I only eat dinner, no breakfast or

lunch, and usually a sensible dinner. I do snack sometimes in the late evening,

not to good. But I should not be keeping all this weight on me, and being short

makes it look worse. I am at 165, with big boobs which I hate cause they only

get in the way, and cause pain in my shoulders and back. I have wondered about

the reduction, but am afraid of the surgery. I know how you feel. It seems like

something is keeping the weight on. I haven't gained any in 3 years, but do not

like this at all. I wish I could exercise more. I like the pool therapy, but

none close but to use.

Oh well,

Jeanette French

Re: Am I alone?

Theresa,

I'm built completely different, I'm 6' tall and large boned, but I was

always very thin. After 3 kids, I put on some weight, but nothing to get too

excited about. I'm now 43 and 40 lbs overweight? at least in my eyes. I

hardly ever eat, becuz, like you, I have no appetite.

[Guest guest]

The only prescriptions I take are Singulair (for my asthma) and Effexor

(anit-depressant). I have never read that either lead to weight loss. Do they?

Peri of Havenhold wrote:

I'm 5'6 " , medium bone structure but amply endowed up top. In high

school I was hourglass shaped ... 37-25-36 ... and 115 lbs. The day

after my first child was born, I weighed in at 118 lbs. It was twelve

years before I had my next child, and my weight had pretty much

stabilized at 135 ... cushy, but not difficult, and nothing special done

to maintain it.

[Guest guest]

Hey Jeanette,

Sometimes, I think the weight stays on becuz I don't have the energy or

strength to work it off anymore. So everything that goes in, just turns

straight to fat. With us eating so few meals, our bodies are grabbing every

little bit that it gets and storing it for energy.

I only learned this from my youth, I was anorexic at the time. Not to the

extreme you see these 80 lb girls now, but I was 6 " tall and 105 lbs and large

boned. Now that I look back, I realize my sight was distorted. I was just

trying to be small and petite like my friends. LOL - I have NEVER been small

and petite. I hit 6' by eighth grade and come from " large stock " as they

say,re: bone size. I don't believe my husband is too happy with the weight

gain, but I have bigger fish to fry at the time. My slim figure will have to be

put on the back burner, just wanna get thru each day.

Jeanette French wrote:

Hi all:

I am only 4'11 " , and I am way over weight. I only eat dinner, no breakfast or

lunch, and usually a sensible dinner. I do snack sometimes in the late evening,

not to good. But I should not be keeping all this weight on me, and being short

makes it look worse. I am at 165, with big boobs which I hate cause they only

get in the way, and cause pain in my shoulders and back. I have wondered about

the reduction, but am afraid of the surgery. I know how you feel. It seems like

something is keeping the weight on. I haven't gained any in 3 years, but do not

like this at all. I wish I could exercise more. I like the pool therapy, but

none close but to use.

Oh well,

Jeanette French

Re: Am I alone?

Theresa,

I'm built completely different, I'm 6' tall and large boned, but I was

always very thin. After 3 kids, I put on some weight, but nothing to get too

excited about. I'm now 43 and 40 lbs overweight? at least in my eyes. I

hardly ever eat, becuz, like you, I have no appetite.

[Guest guest]

Hi Jane,

wow, 6 foot, wish I was that tall, this weight would look ok on that size frame,

lol

yes, weight is secondary right now to getting better, I am also inactive, gosh I

used to be so very, very active...anyway, so you are right anything we eat goes

right to the hips...

Jeanette French

Re: Am I alone?

Hey Jeanette,

Sometimes, I think the weight stays on becuz I don't have the energy or

strength to work it off anymore. So everything that goes in, just turns

straight to fat. With us eating so few meals, our bodies are grabbing every

little bit that it gets and storing it for energy.