First Post

[Guest guest]

Age range:

I'm 23 now and will be 24 in September!

Male/female:

Male

What are the symptoms?

In March 2000, I was working at a hospital as a file clerk. It was a job

that required being on my feet all day long. In mid-March, I celebrated my

one-year anniversary by taking a one-week vacation. When I returned to work,

I suffered from some feet pain but assumed that it was due to being

overweight and just needed to get used to being on my feet again.

The pain continued and in May, I went to see my family doctor. He said I had

inflammation in my feet and just needed to take some anti-flammatories.

However, after one month that pain still continued and I was sent to the

Methodist Sports Facility where they treat local sports stars with injuries.

The physician created specially made insoles for my feet and more medicine.

I wore and took these pills and reduced my responsibilities at work for

another month and there was no improvement.

I went back to my family doctor who gave me stronger pain medicine. There

was still no improvement. At work, my boss was telling me to go back and do

what I used to do unless she received more paperwork. One day, I was on the

phone with my doctor's secretary for several hours of her telling me he would

not give me another note without examining me again and asked if I wanted to

make an appointment.

So granted, I was very angry and frustrated so I said " I wouldn't make an

appointment with him if I had a bullet through my head! " A week later I

received a letter saying that I had been fired from his care. This was about

the beginning of August. So throughout the next month and a half, I still

worked at the hospital and was in INCREDIBLE pain. The pain which had

started in my feet was running up through my legs.

In mid-September my work was suffering and a surgeon had requested my

departure from the hospital. I was told I could resign from my job or be

fired. Since I was in great pain and would rather quit than be fired, I

decided to resign.

From my time in September until late November, the pain was running through

my body. I was also suffering from depression due to being unemployed,

hurting all the time, not getting enough sleep, and members of my family not

believing my pain.

I went back to an old doctor in December and told him I was unemployed, had

no insurance, so I was certain to ring up a bill. He took all kinds of blood

tests, x-rays, MRIs, CTs, you name it...he did it. When all of those showed

nothing wrong...he sent me to a neurologist. The neurologist took a look at

me and instantly said it was diabetes and the pain was a result of nerve

damage.

He sent me back to the doctor to be taught about diabetes. It was in the

neurologist's office that I told my Mom that this wasn't pain because I was

overweight. This was a pain I had never had before and it wasn't diabetes.

So I monitored my sugars for one month and not one day was abnormal for a 23

year old male. In fact they were perfect. The doctor sent me to a dietitian

who said this resembled more of Fibromyalgia than Diabetes.

A week later I ran out of my pain pills and the same day I received a letter

saying I had been fired from the doctor due to a high balance. The pain

pills for 1/2 a month were $428.99. So I was without a doctor, without pain

pills, and my body was full of pain.

In February 2002, I went to the ER after falling constantly and having memory

problems. I arrived at 9:30 AM and didn't leave until 11:00 PM. The

neurologist I saw around 10:30 asked me about my childhood. When I was born,

I suffered from a disease called Small Muscle Fiber Disease. The doctors

said I would never walk, run, or do anything like a normal child would do. I

never cried. I just didn't do anything. However I did do everything they

said I wouldn't be able to do. They performed a muscle biopsy during my

childhood. The ER doctor said he would want to do another one and compare it

to the original one.

So now I have been accepted into a program called Wishard Advantage, where I

don't have to pay for anything. I'm assuming that is the case for medicine

too. My first appointment is on July 31 at 12:30. I then have a neurology

appointment in August.

Has you illness been diagnosed? Yes, and no. Some think I have

Fibromyalgia...but yet I haven't officially been diagnosed.

How long did you suffer before you got help? The pain started in March 2000.

Is there a time that you can remember when it started? I'm not sure what you

mean here.

Some of us have found lack of exercise we are overweight. Have you found this

to be a problem also? Yes.

Are you on disability? No. This is my own personal opinion but if I try to

get on disability that is me quitting. But I'm so tired of this right now

that I want to just go in one direction or the other. I know this is wishful

thinking but I either want the doctor to say " Yes, we know what's wrong and

we can fix it so you can work, " or " Yes, we know what's wrong but we can't

fix it so you might want to apply for disability. "

If you are any pointers for others trying to get on disability?

What have you found that helps ease the pain, warm baths, medications, etc.?

Um, really I guess just a warm bath and try not to get so upset. For me, I

enjoy watching wrestling, and comedy shows to get my mind off of my illness.

Plus, I like to sing.

Do you have sleep problems? How do you deal with it? Oh yeah! LOL I really

don't deal with it except for I try to get sleeping pills and I usually go to

bed at 3:00 AM and wake up at 11:00 AM. I often wake up throughout that

time.

Do you have family that understands your illness? My Mom has been the only

one to stand next to me through this whole thing. My dad, sisters, and

brother-in-laws don't totally believe me or haven't believed me from the

beginning. My grandma knows something is wrong but I don't think she really

knows what's wrong. LOL

Some have found certain foods causes problems with CFS or Fibro, have you?

Not really. My Mom thinks drinking Pepsi may cause more pain. However; I

really don't notice a decrease of pain when I drink or don't drink Pepsi.

What type of Doctor have you found that has helped you the most? This last ER

neurologist seems to really care and want to help me. I hope he does.

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