Trying To Stay Positive Despite So Much Pain.

I am 31 and have my health has slowly been getting worse since I was a teenager. I have had various symptoms and spent most of the last fifteen years going from one doctor to the next. I had a million blood test, MRI's and all the other alphabet soup type names test you can have over the years. I have had issues with dizziness, headaches, gastrointestinal problems, tinnitus, weird sensations in my skin, skin problems and generalized pain for the last fifteen years. No doctor could ever figure it out. Needless to say my life so far has been difficult and very depressing. I just wanted to know what was going on even if it was bad.
The dizziness and headaches have subsided over the years. My IBS like digestive issues have only gotten worse and I have a constant ringing in my left ear. In 2003 I began to get burning in my feet that would come and go. It came and went over the years. Around 2004 -2005 I noticed that I would be getting pins and needles and my legs would fall asleep very easily. A year after that I started getting the same feeling in my left arm. In 2007 my arms, legs, hands and feet started to feel like they were burning. I kept telling my doctor but at this point my doctors thought it was in my head. For years after never finding anything I convinced my self it was in my head. By 2007 I was taking a sedative, mood stabilizer, anti-depressant and sleeping pills daily. I was a zombie and had no life in my life. In 2009 I had enough of being a zombie and slowly went of all my medication. I could feel again. It was a blessing and a curse. I swore of doctors for the next few years as the pain got worse and worse. I just got tired of doctors telling me they don't know and thinking I'm making stuff up or something. Unless a doctor can see something on a test I guess than your nuts. What a joke the mainstream medical system is. I've been involved in it for so long. Its a system based on managing sickness and not health. Symptoms over prevention. Big egos over people.
For the last few years I have been in constant pain. My arms, legs, hands and feet always feel like they are on fire. My pain is made worse by stress, not sleeping enough, cold and triggered by food. My IBS symptoms have become so bad that I barely leave the house. I have also become so fatigued over the last few years that doing anything makes me exausted. Doing anything strenuous causes the pain to get worse. The tinnitus in my left ear drives me nuts. I have developed so many food intolerances that eating has become something I fear. The bigger challenge than being in so much pain is not letting the pain get me so down and depressed. I try to do positive things like going to group meditations, yoga and healing-type circles and positive support groups.
I couldn't take it anymore and went to see new doctors. The good news to me is that I am finally getting diagnosis now that my symptoms are so much worse. My GI doctor after an endoscopy, colonoscopy says I do not have IBS but it is colitis in my large bowel. I went to a rheumatologist who suggested that I have a skin biopsy. I went back to my neurologist for the biopsy to test for small fiber neuropathy. I am awaiting the results but I know what is causing the pain already. I have been on gabpentin for about two weeks and just raised my dose to 1800mg per day but it hasn't helped yet. I hope it helps soon. The doctor tried me on cymbalta but I had a horrible reaction to it and couldn't sleep for two days. I also take b-12. omega 3's and vitamin D.
I am determined to find the cause of all of this. I intuitively and through my experience with my own body know that my immune system is causing this. I'm trying to stay positive and not giving up. At this point I just need some relief.
EricBC563 EricBC563
31-35, M
3 Responses Jan 6, 2013

Hi are you still taking gabpentin. How's your balance.

We share identical stories. I really can't believe it.
I am 29, female..been going to the doctor for 15 years with various health problems, have had neuropathy for 2 yrs now- chiefly burning pain all over except my head ( although I've had tingling in my tongue and lips before). I have gastro problems also. Seems like every time I eat I am bloated, nauseated, feel weird as if I am reacting to something. I have been on lyrica (pregabalin) for a few months now..it doesn't work . I'm on narcotics but am being taken off them because my doctor doesn't " believe " in them unless you're dying or broke a bone.
I have weird skin issues, depression, bouts of fatigue ( methyl b12 plus a liquid b complex have solved that problem). I take alpha lipoic acid and fish oil as well.
A pain specialist just told me to meditate because I have an "overactive nervous system"
I wake up with numb hands and/or feet. Even after a short nap.
My muscles ache and I have weakness, cramping..the whole neuropathy 9.
I see a neurologist next month after a 9 month wait.
I hope to have a biopsy or at least a nerve conduction test done. A diagnosis would at least verify to the dickhead doctors that I am in serious pain.
Its hard, but I do my best to stay positive and go to the gym, see the few friends I have left.if you need any support at all from someone who seems to be in your shoes to a T, don't hesitate . Hang in there.

Hi Eric,
I can so relate to your story. I have a number of medical problems and i have been diagnosed
with SFPN and EM since April of 2012. Can i ask which hospital you are under? and if you need any Guidance on EM then by all means please ask.