Re: How can I get a proper diagnosis? An endocrinologist?

[Guest guest]

i went through sort of the same thing here while back... and still hurting...

pain is in my lower rite side... like where your appendix would be... but i

don't have mine. After going through the tests.. much the same as you have...

me and doc kinda came to an agreement that it was probably from scar tissue

resulting from a hernia operation i had last november..... that diagnosis didn't

help with the pain.. but was glad to know it wasn't something more serious.

over the past several years i have also had unexplainable pains elsewhere. ..

one being in my rite side... rite below my ribs... yeah it still hurts... have

chalked that one up as fibro pain.. as tests didn't show anything.

know this probably doesn't help much... but that is my two cents worth

Huggles! vickie

latasha_willis wrote:

I'm still trying to piece together the puzzle as to what my problem

really is. Here's my most recent episode, which is a copy of a

posting from another group:

" Sorry you haven't heard from me for a while. Let me tell you why.

Get comfortable - it's a long one...

" Well, the good news first. I started my Wellbutrin last month, and

even though the fatigue didn't go away completely, I lost the brain

fog and my concentration improved. This motivated me to override the

fatigue and do things I haven't been doing. I also have been able to

track my finances better (the little I have) and think through my

decisions more. I am thankful that the coma is gone and I can

function a lot better.

[Guest guest]

Have you tried talking to a neurologist about the pain? There may be some

hope there.

Rhonda

I'm still trying to piece together the puzzle as to what my problem

really is. Here's my most recent episode, which is a copy of a

posting from another group:

" Sorry you haven't heard from me for a while. Let me tell you why.

Get comfortable - it's a long one...

" Well, the good news first. I started my Wellbutrin last month, and

even though the fatigue didn't go away completely, I lost the brain

fog and my concentration improved. This motivated me to override the

fatigue and do things I haven't been doing. I also have been able to

track my finances better (the little I have) and think through my

decisions more. I am thankful that the coma is gone and I can

function a lot better.

" Now, the bad news. I had been dealing with an occasional pain in my

left side for over two years after going to the ER for it. Back

then, they took an X-ray and said I had an intestinal blockage, so

they gave me a laxative to clear it out. I still had pain every now

and then, but I ignored it since I wasn't constipated or anything

like that. However, my nightmare began 2 1/2 weeks ago when I felt

the pain and it would not go away.

[Guest guest]

I went through what you are going through a year ago. I don't have

periods any more so skipped the gyn, but had a colonoscopy and all was fine. I

started tweaking my diet and found that a lot of " healthy " foods caused me a lot

of pain. I started eating the most basic foods, drank no alcohol or fruit juice

and gave up all meds. I soon was pain free. I only had a handful of foods I

could eat, but was happy that I could eat! Hope you feel better soon, I know

how it is to go from one dr. to another with no relief from the pain. I was

taking Welbutrin for a few months, and along with all NSAIDs, I am only taking a

half of buffered vits. c right now, because i don't eat many vit. c foods . I

have found that eating foods with magnesium make me happy, naturally. It is

important to get some natural light to the eyes every day too. sometimes when

you don't feel well, you become a hermit and it's a vicious cycle. Hope this

helps.

latasha_willis wrote: I'm still trying to

piece together the puzzle as to what my problem

really is. Here's my most recent episode, which is a copy of a

posting from another group:

" Sorry you haven't heard from me for a while. Let me tell you why.

Get comfortable - it's a long one...

" Well, the good news first. I started my Wellbutrin last month, and

even though the fatigue didn't go away completely, I lost the brain

fog and my concentration improved. This motivated me to override the

fatigue and do things I haven't been doing. I also have been able to

track my finances better (the little I have) and think through my

decisions more. I am thankful that the coma is gone and I can

function a lot better.

[Guest guest]

Latasha, unfortunately even with the best pain meds, some Fibro pain just

isn't going to go away. My fibro doc

has even made me very aware of this. I have constant stabbing pains in my

left shoulder and neck and shins

on a daily basis and I'm on double dose Ultram 3 times a day and a muscle

relaxer(flexaril) every day. Sorry also if this isn't

what you wanted to hear.

Rhonda

i went through sort of the same thing here while back... and still

hurting... pain is in my lower rite side... like where your appendix would

be... but i don't have mine. After going through the tests.. much the same

as you have... me and doc kinda came to an agreement that it was probably

from scar tissue resulting from a hernia operation i had last november.....

that diagnosis didn't help with the pain.. but was glad to know it wasn't

something more serious.

over the past several years i have also had unexplainable pains elsewhere.

... one being in my rite side... rite below my ribs... yeah it still hurts...

have chalked that one up as fibro pain.. as tests didn't show anything.

know this probably doesn't help much... but that is my two cents worth

Huggles! vickie

[Guest guest]

Didn't think about that. I'll add that to the list. Thanks!

>

> Have you tried talking to a neurologist about the pain? There may

be some

> hope there.

>

> Rhonda

[Guest guest]

Thank you. At least I know that I'm not alone in dealing with

undiagnosed or untreatable pain.

In addition, my knee started hurting again after using the treadmill

last week, and my hips take turns hurting while in bed. My TMJ has

not been that bad until recently, and I have resumed cracking my neck

for relief around my neck and the base of my skull. Just a bunch of

stuff going on. I already got tested for RA and lupus - came back

negative.

>

> i went through sort of the same thing here while back... and still

hurting... pain is in my lower rite side... like where your appendix

would be... but i don't have mine. After going through the tests..

much the same as you have... me and doc kinda came to an agreement

that it was probably from scar tissue resulting from a hernia

operation i had last november..... that diagnosis didn't help with

the pain.. but was glad to know it wasn't something more serious.

[Guest guest]

What basic foods have you been eating? Maybe I could try that.

Also, I was posting on the other forum again when I realized that all

I was typing may reveal more clues as to what may be my problem.

(I'm thinking about putting all this stuff in a blog. Maybe someone

else can relate to it.)

Quote:

" When I started having major problems with my left knee last year, I

got tested for lupus and RA since nothing showed up on the X-ray.

Both tests came back negative. I still get pain in that knee now and

then in addition to my hips and my left side. Before that, when my

sinusus started giving me a lot of trouble, I saw a ear, nose and

throat guy who checked me for allergies and had a CT scan done on

me. Once again, he found nothing and said I had vasomotor rhinitis

(problems caused by environment) and that there was no cure. And

before that, when I had really bad jaw pain, another doctor said I

had TMJ, told me to avoid gum chewing, and prescribed an anti-

inflammatory that worked but made me drowsy and nauseous, so I've

stuck to OTC painkillers or just toughed it out. Oh yeah...I also

had a sharp pain in the joint that connects my big toe to my right

foot. The doctor I saw for that did an X-ray and said my toe was a

little inflamed, but nothing was wrong with the joint. He also

tested me for gout, and those results came back negative.

" For the most part, after talking to doctor after doctor for several

years, I'm tired of looking at doctors. I'm only 31. I'm too young

for this aggravation. I spent most of my twenties going to clinics,

going to the ER, popping pills, etc. I get out of one pain and go

into another, but either no one can tell me why or they see I'm on

psychiatric meds and just say the depression or anxiety is why I am

hurting. Sometimes I think I get the brush off because I'm a woman,

or because I'm black, or because I'm not rich. It may not be either

of those things, but I do feel like I am getting shortchanged.

" I guess that's why I didn't want to see any doctors this month. I

just need to pretend for a little while that I don't feel any pain so

I can feel just a little bit normal. I have been ignoring any pain

that has showed up this month because I don't feel like dealing with

it. Sometimes I wonder if I have to go into a coma for a physician

to take me seriously and really look at what is going on. I would

like a name for this pain so I can have some closure, but I'm not

sure if I will ever get that. "

[Guest guest]

I'm sorry your having such a hard time with this. I wemt through

something simular but had a good Primary doctor that would not stop

til he found out what it was. Ended up I had gall bladder attack that

was not caused from stones....but " sand " that completely blocked my

bile duct. If you dont presently have a doctor willing to persue the

problem without giving up before he has....I would find another

primary doctor. If they say your depressed, I would ask why when they

dont easily know what is wrong ...do they want to figure it's all in a

patients head? If he still doesn't turn around, I'd seek another

until I got my questions answered! They have a way of making you feel

stupid but believe me...if it was them, they would act quite differently!

Don't give up...be strong in who you are and what you know. Don't

take that garbage! If they havent done a upper GI and then Lower de

pending on where your pain is exactly (transferred pain can make it

difficult) then they have not done enough!

God Bless!

Let us know how it works out.

/Dutchie

Can you allign the pain with being worse after an activity?? Eating?

....moving?? etc?

>

> I'm still trying to piece together the puzzle as to what my problem

> really is. Here's my most recent episode, which is a copy of a

> posting from another group:

>

> " Sorry you haven't heard from me for a while. Let me tell you why.

> Get comfortable - it's a long one...

>

> " Well, the good news first. I started my Wellbutrin last month, and

> even though the fatigue didn't go away completely, I lost the brain

> fog and my concentration improved. This motivated me to override the

> fatigue and do things I haven't been doing.

[Guest guest]

Well, I hear ya, same thing here, exactally, I even

had a endoscopy and .....nothing. I struggle and cry

and I hear your frustration totally. I feel like once

you are diagnosed with something like Fibro/CFS, it is

like a branding on your butt and they throw all pain

into that catagory!!! Just know that you are not

alone, I am searching for a new doctor and you can

too. I am educating myself and I wont take " no " for an

answer (once I get the nerve to follow through lol).

I know it is hard, you feel alone, embarassed, and you

feel like they think you are making it up, you aren't

and we are with you!!! Keep your chin up, I know it

is hard but god gave us this for a reason, I believe

we will find the answers.

DEB R

--- latasha_willis wrote:

> I'm still trying to piece together the puzzle as to

> what my problem

> really is. Here's my most recent episode, which is

> a copy of a

> posting from another group:

>

> " Sorry you haven't heard from me for a while. Let me

> tell you why.

> Get comfortable - it's a long one...

[Guest guest]

Sorry, I can't remember who wrote that she feels her doc doesn't give enough

credence to her symptoms, and thinks it may be because she is a woman or because

she is black (or both). Well, I feel the same way and I often wonder if it is

because I am an elderly white woman! LOL! And gal, we are not alone! Wish I

could be nearby to give you a " boost " on those days when you come out of your

doctors office wondering why you even took the trouble to go! I am currently

searching for a new doctor...........don't know if I will have any luck, but it

makes me feel that at least I am doing SOMETHING! Within the next two weeks I

am having a stress test, a brain MRI, and a 6 hr. EEG. None of the doctors that

I have gone to even consider that my weird symptoms may just possibly be caused

by one underlying condition! If these tests show nothing, I may just give up

on doctors. I think this is possibly the loneliest disease in the world! Hugs

to all Jan in NH

[Guest guest]

Hi, I'm new here and I am also a elderly white woman. I'm 72 and have just

been bothered with these problems since last summer (2005) Started out with the

overwhelming fatigue--- couldn't hardly drag myself around. Went to the Dr. and

had a battery of tests, which were all " within normal limits " . Except my ANA was

a little above normal, but Dr. said don't worry about it, cause about 50% of

women over 50 have a slightly elevated ANA. Then in November I had a flare up

of some other problem that has been a bother for over 40 years and ended up in

the hospital. Was there for a few days till the other problem was resolved, but

during that stay I had a high Blood Sugar. So the Dr. attributed my tiredness to

that. A few days out of the hospital tho, I started the aching--- could hardly

get around, pain in everything that moved-- and in some things that didn't move.

Went back to the Dr. and he did a bunch of tests, x-rays and all and said that I

had arthritis of the spine and the beginnings of osteoporosis. But my RA factor

and other blood tests were normal. Told him that I felt depressed because I

ached all the time and was too tired to do anything. He put me on Fosamax, and

Zoloft. Went back about a month later for a check up, and told him that I still

felt achey and tired all the time. I told him that I had looked up Fibro and CFS

on the internet and had ALL of the symptoms. He just looked at me and didn't

offer anything else. Just to said " rest when you have to, exercise, try to lose

some weight, and take vitamins " . Well, here it is a year later--- still having

the same symptoms, some days worse than others, I take my BS daily and it is

almost always under 120--- so that isn't the problem. What next? My hand and

feet feel like wood sometimes--- I was always a pretty active person, but this

is dragging me down. Any questions or comments, or advice? Petula

[Guest guest]

The pain in my left side is about the same no matter what I do, but I

remember it intensifying a couple of times when I was under a lot of

stress. I started to wonder if it is a spasm or something. As for

the rest of me, my left knee flares up more if I use the treadmill

more than twice a week, and the pain in either hip sometimes gets

worse if I an lying in bed or sitting in a hard chair (which also can

make one or both legs fall asleep).

[Guest guest]

Hi

first post for ages...

how about including " fat " in your list?

so thats :-

woman,

black/white

fat,

ME/CFS/CFIDS

over 40

the psychos are working overtime, on inventing a new disease just for

us:~}

why the heck do they give diet advice, dieting does not work..

nopace4me

>

> Sorry, I can't remember who wrote that she feels her doc doesn't

give enough credence to her symptoms, and thinks it may be because

she is a woman or because she is black (or both). Well, I feel the

same way and I often wonder if it is because I am an elderly white

woman! LOL! And gal, we are not alone! Wish I could be nearby to

give you a " boost " on those days when you come out of your doctors

office wondering why you even took the trouble to go! I am currently

searching for a new doctor...........don't know if I will have any

luck, but it makes me feel that at least I am doing SOMETHING!

Within the next two weeks I am having a stress test, a brain MRI, and

a 6 hr. EEG. None of the doctors that I have gone to even consider

that my weird symptoms may just possibly be caused by one underlying

condition! If these tests show nothing, I may just give up on

doctors. I think this is possibly the loneliest disease in the

world! Hugs to all Jan in NH

>

>

[Guest guest]

" Fat " is a prejudice--- I have been overweight all of my life-- not grossly, but

enough that I have suffered all kinds of abuse because of it. I have been nagged

by my peers, family, doctors, schoolteachers, on and on and on-- to the point

that when I go to the Dr's office and first thing they do is slap my butt on the

scale--- my blood pressure rises 20 points!!! When I was in going into high

school they had all of us girls line up in the gym in our underwear and go thru

an exam much like you see guys going thru in the military. The dr got to me and

said " boy are you fat!! If you don't lose some of that weight you are not going

to live to your 20th birthday. " Think I was something like 20 pounds

overweight. Everyone in the gym laughed--- I hated him from that day on!!! And

took a lot of ridicule from that day on. I am now 72 and have had a full

productive life--- still overweight. But the last year since all my CFS/fibro

symptoms has been hell. Petula

[Guest guest]

I am in the process of finding a doctor. I was diagnosed with fibromyalgia 5

years ago, but it never seemed to fit. I now believe it is CFS. I went to a

rheumatologist; she spent a lot of time with me, but admitted she didn't know

how to treat CFS. I bought Teitlebaum's book, " From Fatigued to Fantistic "

and it makes sense. If you go to his website, endoffatigue.com, you can access a

physician search for one in your area familiar with this debilitating disease.

However, it seems that most do NOT take insurance. I have made appointments with

2. Good luck in your search, and God Bless!

Debbie

[Guest guest]

My recently had a clean up procedure done on my left knee , after many consults

and sleepless nights and many years of not doing much and getting fatter, and

finally I am better now. My problem was a piece of cartillage that was poking

me. The pain went up to my hip and down my left leg into my left food. I send

my sympathy because it was a hard thing to diagnose. Even my MRI did not show

anything specific, but the surgeon that did the work said may times nothing

shows up on xrays or mri's . Hope you can resolve the problem soon. E

latasha_willis wrote: The pain in my left

side is about the same no matter what I do, but I

remember it intensifying a couple of times when I was under a lot of

stress. I started to wonder if it is a spasm or something. As for

the rest of me, my left knee flares up more if I use the treadmill

more than twice a week, and the pain in either hip sometimes gets

worse if I an lying in bed or sitting in a hard chair (which also can

make one or both legs fall asleep).

[Guest guest]

I hear you loud and clear. I cannot even go to a movie anymore because I can't

sit that long in one position. I have to get up and move around-- no matter how

it hurts-- because to sit or lay in one position for too long hurts too bad.

Petula

Re: How can I get a proper diagnosis? An

endocrinologist?

The pain in my left side is about the same no matter what I do, but I

remember it intensifying a couple of times when I was under a lot of

stress. I started to wonder if it is a spasm or something. As for

the rest of me, my left knee flares up more if I use the treadmill

more than twice a week, and the pain in either hip sometimes gets

worse if I an lying in bed or sitting in a hard chair (which also can

make one or both legs fall asleep).

[Guest guest]

I saw an allergist last week, and I found out that I am allergic to

dust mites. Could this be a cause of my pain? I also went back to

the rheumatologist and had more blood drawn, so if they don't find

anything in the bloodwork, I'm going to assume that my reaction to

dust mite waste is the main source of my pain, sinus problems, etc.

It will take m a while to know for sure becuase I have to get special

encasings for my mattresses and pillows, dust my bedroom, get rid of

stuffed animals, etc. After I do all that and follow up with the

doctor next year, I'll know for sure. It would be great if this is

the answer I am looking for! Not an easy one, but a great one

becuase at least I know why!

>

> I hear you loud and clear. I cannot even go to a movie anymore

because I can't sit that long in one position. I have to get up and

move around-- no matter how it hurts-- because to sit or lay in one

position for too long hurts too bad. Petula

> Re: How can I get a proper diagnosis? An

endocrinologist?

>

>

> The pain in my left side is about the same no matter what I do,

but I

> remember it intensifying a couple of times when I was under a lot

of

> stress. I started to wonder if it is a spasm or something. As for

> the rest of me, my left knee flares up more if I use the

treadmill

> more than twice a week, and the pain in either hip sometimes gets

> worse if I an lying in bed or sitting in a hard chair (which also

can

> make one or both legs fall asleep).

>

>

>

>

>

>