Severe nerve pain (?) over lower body -- what is it?

[Les]

I would like to describe the symptoms of a good friend -- age about 42 -- who is going into her seventh week of an illness.  She has sought medical advice and help several times and has been told she has a virus which should 'run its course' and then be gone.  To date, she does not show much improvement.  Seven weeks ago, she thought she was coming down with shingles.  She had extreme sensitivity of the skin in the abdominal area -- sensitive to touch and ached even when not touched.  Her hands and feet were other sites for this situation.  Then it spread pretty much over her whole lower body, from the belly button down.  From the waist up, pretty much okay except for palms of hands and fingertips. They hurt.  She strongly feels that the pain she is experiencing is nerve and not muscular in origin.  She describes the pain sites as looking like goose bumps and being very sensitive to cold.  She says it feels like someone is 'rubbing crushed glass into her skin.'  She cannot tolerate clothing touching the affected areas.   Sox hurt, bed sheets hurt, soft fabrics feel very abrasive to her.  There is not a rash with this.  She describes it as a pain below the skin -- 'like her nerve endings are on top of her skin.'  She reports that in the sixth week her feet, especially around the small veins of the ankles, are a problem: she feels like her ankles are about to 'give out' when she stands. (This may be a side effect of having lost nearly all muscle tone?)  She reports having a low grade fever (99.7 is tops) that'comes and goes.'  The only other obvious symptom is a dry 'hacky' cough that 'starts as a kind of rumble in the middle of her chest' and occurs frequently.  She was taken to an emergency room two days ago because the pain was getting so great.  She was given a shot of demerol and got about fifteen hours of relief, but then the pain returned.  Sleep is fitful -- a couple of hours at a time.  She was a very active person who maintianed her body with light work-outs and exercise routines.  She had maintained a diet high in fruits and vegetables and vitamin/mineral suppliments.  Onset of this condition was rapid, going from not even noticed to excruciating itching and then excruciating pain within a twenty-four hour period.  To date, she has lost fifteen pounds and now weighs only eighty nine pounds.  I am coming to this forum because her physician here keeps saying 'wait and see' and after nearly seven weeks this does not seem to me to be a good approach any longer.  Her sick leave is nearly exhausted and her physical condition seems not improved and her general emothinal statew -- ususally very positive -- is rapidly deteriorating. What is it and what can she do about it?

[CCF Neuro[P] MD, RPS]

Dear Les:

Sorry to hear about your friend.  I probably will not be able to help much as there is much information missing (not your fault).  I will assume that all her laboratory tests have been normal (CBC, sedimentation rate, ANA, C3/C4/C50, CK, lactate, electrolytes, vitamin B12, folate, homocysteine, hemoglobulin 1Ac, globulin electrophoresis, and electrolytes).  I will also assume that there is no family history motor sensory neuropathies, porphoryia, Tangier's, etc.  I will also assume that she does not have any sort of chronic disease such as diabetes, alcoholism, drug use, high cholesterol, HTN, cardiac problems, collagen vascular disease, cancer, etc.  I will also assume that her physicians have checked for paraneoplastic antibodies, especially for breast cancer and uterine cancer.  I will also have to assume that her thorough neurological examination was completely normal.

As you can tell the possibilities are extremely large.  When all the testing comes back normal, it then becomes a puzzle that we need to begin to place together.  This takes some expertise, some lucky guesses and probably multiple minds together.  When one becomes in doubt, I would suggest seek a second opinion as a fresh look at the data and another neurological exam might pick up something.

I am sorry that I probably not much help.  I hope that your friend actually has post-viral syndrome and fully recovers.

Sincerely,

CCF Neuro MD

[hankster]

A related discussion, i have been having pain inside the cheeks of my buttocks just a inch above was started.

[pacca1000]

I had the same thing for two years and was finally diagnosed with peripheral neurophthy.  See a neurologist and get an EMG and a nerve conduction study.  Good luck.

[Les Morningstar]

Thank you for your response.  My friend has indeed sought a second opinion and she will use your response to determine what tests have already been done and what still needs to be addressed.  If the condition persists, I will contact you again -- and I now have a better idea of the data you will need to see.  Again, thank you so much for your help.

[Mike Flasco]

This may not help much,but I have been expierencing the same symptoms for 4 years.I did break out with shingles on the upper left side of my face and neck.No one seem to feel there is any connection between the shingles and the pain in the right leg.I have now come to the clinic and hopefully they can diagnose the cause ,when others could not. I have had every type of  test and treatment from drugs to accupuncture. Good  luck

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