rare disorder of unknown origin and undiagnosed

[sweetpipes]

I have been the rounds of Dr.s and tests. No one has been able to find "anything wrong with me clinically: and yet I continue to experience severe and bizarre symptoms that don't fit any category. I have even been told it is "all in my head" and Drs just throw up their arms and give up yet it is exscruciatingly painful 24/7 so how am I supposed to give up and go on with my life. To get to the point : MY symptoms are : Chronic pain which never abates . The pain seems to originate in my lower lumbar, mid back about the point of the beginning of the dorsal roots. I have burning and tingling that is constant that radiates mainly from mid back , throughout my entire pelvis, abdomen, and continues down both legs and feet. The burning is almost unbearable. The tingling now radiates all over my entire body including my tongue, cheeks , under my eyes and now even in my skull. I have extreme sensitivity to the slightest touch, wind, clothing, shower , anything at all. It feels as if my entire neuro system is overactivated.somewhat akin to having wiring gone awry and just burning out of control and sending electric shocks. I get :waves: in my abdomen and bloating with a lot of flatus that is like being filled like a balloon and letting it out. I have pressure in my rectum and burning in my vulva. I feel if I press on a certain mid spot in my lower back a ;raw; feeling that extends down to the rectum inside. I have had twitching and involuntary movements when in a relaxed state. I get twitches of blood flow in my arm that is like a jumping feeling I can actually see on the outside of my arm. I have trouble walking , and doing daily activities and any strenuous excercise. I consider myself disabled and yet have no 'proof' that anything is wrong to get assistance . I have learned to tolerate incredible amounts of pain . The disbelief by others is very difficult to cope with psychologically. I do take meds, neurontin, cymbalta and tramadol  and recently diagnosed with HPT on chlorthalidone. I have tried everything from meditation and accupuncture, mental health treatment to steroid shots without any relief. At times I have become on the edge of suicidal but now I go on living a healthy normal life in spite of the agony I live with everyday all day inside this body. According to the Drs I am extremely healthy. No abnormalities. I cannot believe noone can figure this out , from tests of any kind and see no bone disease ,viral disease , neuro diseases etc. etc. etc. I am at a loss. I wonder if I have contracted some bizarre unknown disorder or if it will reach my brain and kill me. My back gets very sore and stiff. Just touching my back I can feel all the nerves around the spine jumping to the slightest touch. Things that give relief are heat, rest and vibration, I still manage to ride my motorcycle and it is the only time I forget about it , but also the vibrations seem to help. Who in the world can help me ?

[Jules77733]

Ughhh I had a post typed out to this two days ago and tried to submit it, but MedHelp or my internet froze on me and I guess it never submitted...I had hoped it would, even after the window was closed, but it never did. I'll have to think about what, exactly, I typed out.....but I can't recall all of it at the moment.

I think I was wondering why you were addicted to pain killers in the first place, why you then tried to attempt suicide for starters, and how your doctors were able to bring your liver back from failure? Typically, addictive behavior (like being addicted to prescription medication or gambling, or even being a workaholic) is genetic. Do any family members exhibit similar behavior, or were you started on pain medication for something (maybe following a surgery of some sort?) and then just became addicted to it as a result of this?

Another point I made was that you might be experiencing a lot of pain (and burning sensation) as a result of damaged nerves from riding on a motorcycle--subjecting the body to that much continuous stress and high-frequency vibration is never a good thing. How many years did/do you ride?

When I have a chance, I'll post the other things I was thinking of...until then, I'll mull over what you wrote. In the meantime, I'll also keep hoping that you feel better soon! I'd avoid riding a motorcycle if I were you...maybe see if that lessens your pain at all (if you haven't already avoided riding).

[sweetpipes]

My current primary physician did say I have elevated adrenaline and wanted me to do a 24 hr urine catch, but I have just changed Dr. s due to him accusing me of having nothing at all wrong and refusing to sign a form to release me from work for the time being til I am further evalueated . I am going to a Pain mgmt clinic and about to attend physical therapy. They may fix me up with a tens unit The steroid shots do not seem to help yet. I wish I could go on TV and find a DR. to help me or even ask a reliable psychic. It has been suggested I need spiritual help. I don't care what I have to do , I just want to know the solution .

[sweetpipes]

Tests: MRI of brain, thoracic and lumbar spine. X-rays of thoracic and lumbar spine. CAT scan of organs. Lumbar puncture,spinal fluid sent to Mayo clinic for evaluation of possible viruses. Neg. for post herpetic neuropathy sin zoster herpete.(PHN SZH) neg. for CIdp chronic inflammatory demyelinating polyneuropathy)neg. for MS (multiple sclerosis) ng.for HIV AIDS Nothing has been found abnormal with any of my organs including my liver, kidneys. No signs of cancer, tumors. Nothing abnormal in my spinal structure i.e. bulging disc or degenerating disc , spinal stenosis. etc I do not even know everything I have been tested for with my blood samples. I did have a bout of bladder infection which made the symptoms worse. I have had high blood pressure HPT No diabetes. I just seem to be incredibly healthy by any standards. I have a strong constitution and am in good shape, muscular due to the fact I am a biker chic. I have always used physical activities as a stress outlet. I am 52 yrs. old mother of 5. I get told constantly I look very young for my age and in excellent shape. But inside I am burning alive. from this. I am a recovering drug addict who was addicted to pain killers. I attempted suicide by overdose last 2/07 and was in liver failure. After recovery the symptoms began , a slight tingling and occasional burning in the feet. It has progressed over the last 18 mo. I am under outpatient care at mental health and am in Narcotics Anonymous. Today I am very happy and have a wonderful life, many friends and much to live for. I believe that somehow the disorder is related to something triggered by the overdose but noone seems to know how. This is why I was sure it was PHN but they say it is not because it is not localized to one area of my body , but is everywhere. I have sensitiviy from my face and now skull all the way to extreme burning and tingling, weakness in my legs.  Stress definitely increases my symptoms , but I absolutely do not believe this is mentally contrived . The pain does follow certain patterns and is too bizarre to be something in my imagination. I had an EMG and NCS , nothing found abnormal in my nerves or muscle conduction. I have been told by my physicians I am just an addict wanting pain killers, or I am a mental case. I have tried everything from visualization, positive thinking etc. I cont with life as normal as I can .but I am unable to work a job. I am attending University and am an educated person , a former nurse so I am not an idiot.  I am seeking help at KU med research center by a specialist in neurology. Again she does not know. Perhaps genetic testing , however nothing of this kind has ever been reported in my family. We have no genetic disorders.

[Jules77733]

What's your family medical history, and your medical history? I.e. age, lifestyle, diet, weight, do you take any supplements/vitamins or medications aside from the ones mentioned, any prior hospitalizations or surgeries--and what for, etc. When did this start and for how long has it been going on? What tests and bloodwork have you had done, and what abnormalities shown up?

The radiation from your back through your abdomen sounds like pancreatitis, but the pain down your legs sounds like degeneration of your spinal nerves at the roots, while the remaining symptoms almost sound gastrointestinal in nature...having the above information would help, I think.

I hope you get the treatment you deserve and start to feel better soon, regardless! I'll say a prayer for you...