these symptoms have been mild and grown over the years. I used to think that it was my over doing it, and thought nothing about it, until 5 years ago.
For over 30 years I have been suffering from a multitude of systems, whom a gp diagnosed me as having rheumatoid arthritis at the age of 9. Well, between my parents and the specialist (that our regular gp referred us to), tended to disagree and could not give a specific diagnosis.
When I was 9, every 'big' joint in my body swelled to the size of grapefruits in a week. After dragging my torso around for sometime, my mother finally convinced my father to take me to an er ( my parents do not beleive in medicine at all) and they drained my joints with (to me at least!!) a huge guage needle. The fluid was thick and green/yellow color. I remember that very well as the pain caused me to faint several times. Over the years, I have had my joints swell, but nothing like that time years ago, until 1999.
I had been having medium pain in my joints and my right hip was completely numb from pain and I was using a walker to move about the house. This happened gradually over time. One morning, I was 'pulled' into a fetal position. This was pain from hell!! Every movement I made and anything that touched me, was completely nerve paralyzing. It took the emt's almost a hour to move me from my bed to the ambulance (from my bedroom to the carport is less than 25 feet). Was it coincidence that I had just quit smoking about 2 months prior to this happening? Still quit as of this posting.
After we arrived at the hospital, the doctor on call, looked at me and did a number of blood tests. He said there was an unusually high wbc count, but no sign of infection. I was tested for scleroderma, ms, md, and pps. I was bed ridden for over 3 months.
Now, 5 years later, I have regularly had 'episodes' like this 2-5 times a year--not as bad though. They happen with no warning at all. I have, what I call, 'heart burps' where my chest feels like my heart is burping. This happens on a daily occurance since the big episode. These 'burps' happen anytime. They make me dizzy and I feel as if my heart is quivering and not beating whatsoever and it is painful. This lasts from a few seconds to a minute. My muscles are 'tender' and sensitive (lack of a better description), to the touch. My fingers and toes have 'knots' on them that are soft and slightly painful. The connective tissue on the backs of my hands and feet are tight and sore. The outsides of my feet ( a very small 'strip') are faintly numb from the ankle to the tip of the baby toes, on each foot. Penny size pockets of fluid(?), appear around most of my joints, but primarily around my hands and toes, and occasionly on the back of my neck. These go away in a few days time. Nosebleeds (i average 4 or 5 a week), menorrhagia (2 d&c's over a period of 2 years), cluster migraines, hyperthroidism and ibs ( this showed up 3 years ago). My right shoulder 'locked' (this ocurred a year ago out of the blue) and I cannot raise it straight above my head anymore. Episodes of muscle spasms on my biceps on the left side, on my right thigh and left calf (this has been happening for years).
I have been to 2 specialists and each one tells me different things. One tells me it is scleroderma and the other says it is ms. My family doctor told me that he thought it was ms and scleroderma. I know one thing, I hurt constantly and it is driving me crazy-literally.
My parents told me that there has been several people in our respective families that died with this similiar problem. So, I am wondering if it is a genetic thing, as well.
I was a person that was always on the go and we enjoyed hiking and swimming. Now my life revolves on managing pain (more than ever now) so that I can function for my husband and child and to maintain our household. It has been over 2 years, now, since I have seen a doctor at all. My regular gp up and left town over 2 years ago. The replacement doctor, says it is all in my head and told me not to be concerned about it. When I last visited him, he took me off all medication and I haven't had any meds in over 2 years. My husbands' insurance is a hmo and I am stuck with this doctor. We simply cannot afford to go outside his insurance and see a doctor on our own. We already have thousands of dollars due to the hospital from 5 years ago.
The pain is still there and as I have no way to get medication, I do the best with what we can get otc and some days that is not enough. I use meditation to work through the pain on bad days, and want to die on others. We tried to get aid for my medical bills and to find someone to help me, but we make too much to get any help. I don't understand it as our hmo takes up one fourth of his income of 20 thousand, still leaving us with co-pays and our regular household debts to pay.
I thought there might be someone who could give me pointers on what this is and how I can find someone who would help me get my life back.