New to the group

[Guest guest]

Hello,

I joined this group a few weeks ago and have just been reading things so

far. My name is Kim and I'm 32. I'm single and live alone except for my 10

year old golden retriever, Brodie.

Let's see, I'm not really sure where to start. I've been feeling pretty

terrible for about two years. Mostly, it was just major fatique and general

over all yuckiness. But I also had a major increase in my migraine

headaches. I have had those since I was 5 years old. In the last year and

a half they got to the point where I ended up in bed for days and days. My

family doctor did tests and sent me to ther doctors, wo did tests. I got a

neurologist. After all of that, we found out I had dangerously low

potasium, and dangerously low B12, but was only after a year and a half of

doctors. My old GP completely missed both of those. The Neurologist put me

on Topamax, now at 400mg a day, cyproheptadine and has given nerve block

injection in my head. Yet, I still had no energy, headaches and still felt

terrible. So, my GP decided I must be depressed, which I had no doubt of

anyway. So, I started antidepressants. And that didn't do anything, but

stop me from crying.

On December 22, 2002 my right hand started to hurt really badly. My GP

thought the Topamax was causing it, so he insisted that my Neurologist

decrease it. He did and my head started hurting so badly I thought I was

going to die. In the meantime, the pain in my hand spread all over my body.

My Neurologist, who had said in the beginning, it was not the Topomax, I'm

sure was happy to tell my GP he was right and increased the dosed again,

which did help my headache at least. And it did make me realize it was

helping my head, some what. However, the rest of my body was still hurting.

So, my doctor ran a Rheumatoid Arthritis test, which came back negative. He

then decided I might have Chronic fatigue syndrome of Fibro Myalgia. So, he

referred me to a Rheumotologist.

My appointment wasn't for a few weeks and he had given me some information

about CFS and FM to read. My aunt had been tested for these as well and she

mentioned that I would also be tested for Lupus and Lime Disease. I wanted

to know about these things. As I began to research them, I discovered that

SLE Lupus was the only one of the four that has a lot of the strange things

I have.

Over the last nine months I have had horrible break outs of sores on my

scalp. Then there was the B12 and Potassium problem. I've also had redness

across my nose and cheeks before. My mom has told me several times she

thought I had tia.(sp?) In the Summer of 1995 I got extremely ill

with major abdominal pain. No one knew what was wrong with me. Doctros ran

all kinds of tests and finally just said I had a virus. All they could do

was keep giving me shots of dimeral, until it finally went away. When it

did I lost 40 pounds in six months for no reason. I continued to have some

abdominal pain for the next three years. And ended up having surgery to

find out what was going oin. They found out my colon was bent up in a tent

shape and stuck to the top of my abdominal wall. The cause was prior

inflamation. Which I am positive was when I was so sick in 95'. I have

had high blood pressure since I was 16 years old and no one in my family has

ever high blood pressure that young.

Anyway, after reading all of that I called my doctor and asked him to run a

Lupus test. And I told him why I wanted it done. He agreed to do it. He

just ran the ANA test and it came back positive. At the rheumotologist told

me he did not think I had Lupus. He took what seemed like gallons of my

blood and ran all kinds of tests. He found that I had elavated protein

levels and a positive serum petide. All the other tests he ran were

negative. I'm not really sure what the other test were. I do know he was

looking for other types of arthritis or connective tissue diseases.

After all that I finally asked him if this meant he still didn't have a

diagnosis, because I was getting frustrated and he said, well you have a

positive ANA and the positive seruam petide and the elavated protein and I

just don't want to wait until your kidneys start failing to treat you. So,

basically I guess he is saying I do have it, but I'm still not sure because

he didn't come right out and say it. At any rate he is treating me for

it.

I am on 200mg of Plaquenil and 5mg of prednisone. I didn't show any

improvement on the prednisone by itself. I have been on the plaquenil for

almost 5 weeks. I have three days where I felt a little better then pain

got really bad again. Then it got better for about a week. Then last week.

My skin started burning.

I've had these little bumps popping up for awhile now. Well they are all

over and there is this rash everywhere that looks like measles. Right after

that popped up, about a day after the pain started up again and I've felt

sick to my stomache ever since.

I called the doctor and he told me to incress the prednisone to 10mg a day

for three days.

I tried taking an Aveno oatmeal bath for the rash, but that made it burn

even worse. Does anyone have any ideas about what I can?

The body pain is also really uncomfortable, even my ears hurt. My bed and

pillow feel like rocks. I tried my parents Temporpedic bed, but it didn't

seem any better. Does anyone else have this problem? Do you know if those

Sleep by Number air beds help? I thought that memory foam stuff would and

was shocked when it seemed worse than my regular matress.

Thanks for reading my majorly LONG message. I'm sorrty I dragged on

forever!

Kim