Symptoms for 33 years

Following is a precise chronology of my currently active “flare ups" which will last about a week to 10 days.

1/30/11  
2 p.m. Burning/Itching of hands start. (Rarely the feet will be affected)
7 p.m. Small itchy bumps form on right hand on outside edge of index finger. (same site every time)
10 p.m. PL8 left foot and leg, unable to bear weight.

1/31/11  
3 a.m. PL10. Pain in neck and shoulders, neck movement limited. Explosive left knee pain.
(chronic fatigue and sleep though out episode)

2/1/11  
5 p.m. PL5. Pain in neck subsiding. PL8 shoulders. PL4, Left leg more generalized. Able to walk fine.
9 p.m. Bumps on right hand disappearing.

2/2/11    
2 p.m. Awoke after going to bed at 9 p.m. Missed the whole day of work. (Might get terminated).
4 p.m. PL3 left leg and neck and shoulders subsiding.
5 p.m. New flare up of itching and burning in hands. No new bumps. PL7 in both hands and joints.
6 p.m. PL10 hands, possibly from typing this.  PL6 between shoulder blades also due to sitting in this position too long. Will probably subside when I am done. (Which now makes me aware that my activity during these flare-ups may be the defining pain factor. Is the flare up actually system wide and joints being used exacerbating the pain?).

Migration will continue.

Previous flare up 10/15/10 Only Neck/Shoulder/Elbows/Hands/Fingers affected. Mostly joint like pain. Lasted 3 weeks.

Previous flare up 9/02/10 with lower limbs affected only. Unable to walk for two days due to knee pain and joint stiffness. Only had about 3 days free from pain until next flare up on 10/15/10. Longest episode yet.

Like many of you I have seen every specialist. Currently I am seeing a rheumotologist who has neither agreed or disagree with my PCP's Dx of arthralgia and possible fibromyalgia. She has been the only doctor to follow me through these three flare-ups and does not seem to care that the pain is always in a different area and moves around and the blisters/itching/burning don't figure into her Dx. I also have HIV and now most doctors just say its HIV neuralgia but I did not contract HIV until 7 years ago and have not been affected by it. My HIV is a non issue.

I am the specialist on my symptoms; I have had them since I was 14. But I could deal with it then because they only happened about once every three or four years and only affected my hands, which would remain practically frozen shut for a week or two. At the same age I also started having dizzy spells and facial twitching but I rarely have episodes of those today.  Now it’s once every two months and the pain is disabling and impacting my quality of life.

Based on my limited medical knowledge I have come to some conclusions:

1. Some form of herpes?
2. M.S.?
3. Some form of severe allergic reaction?
4, Rare undiagnosed autoimmune disorder?
5. Lymphatic?
6. Be profiled on Mystery Diagnosis?

I refuse to have this dumbed down to an unknown maintainability disorder with multiple suggested Rx to treat only the symptoms. Because the onset is so acute I would first have to make a doctors appointment, get the Rx, start taking them and by that time the flare-up is subsiding and I continue on as normal.

Simply put, my disorder should first be approached with two things in mind: Acute allergic reaction type symptoms with visible skin changes followed by acute onset of migrating pain with multiple indiscriminate locations not limited to muscle, nerves or joints.

I am a pretty strong individual and aggressive self-advocacy has not helped. I feel my ONLY next step is to have one of the bumps biopsied but no doctor will order it.

A doctor HAS to diagnose you with something or your insurance company won't accept the bill. That's a sad state of affairs. So realize that your doctor could simply be making a well-educated and respectful assumption and may need some time to really figure out your issue. Don’t get angry and tell your community your doctor was “wrong”. I'm not about to believe I "have" fibromyalgia or neuralgia, it’s just a starting point. Some diseases or disorders can ONLY be diagnosed by ruling out all other possibilities. Yes, this means that your disorder may only be able to be named by the absence of all other diagnosable disorders, Ruling Out. Now that's hard. And then your diagnosis may only be able to be defined as "on a more likely than not basis"; a probability based on an improbability.

About the pain. If I were define what my life has been like concerning this disorder it would simply be me getting into an automobile accident about once a month, that's how bad the pain is.

[COBOB]

It doesn't sound like it is a "disease of the central nervous system."  Bumps on fingers and joint involvement makes MS sound unlikely.  While you have pain, it seems tlated to inflammation and physical causes and less neuropathic from your description.  If you have HIV, then the question becomes one of viral titers.  CMV, EBV, Herpes, shingles, etc.  It isn't just HIV, but the concurrent infections that can go along with it.

Since your B-cell, T-cell profile may be altered, and environmental allergy or autoimmune response is always a possibility.   Maybe a sensitivity to a component in your medications.  How about labs?  RA Factor, ESR, ANA, Anti-DNA, WBC Diff Regardless, etc.  Immunoglobulin electrophoresis may be able to determine if this is allergy mediated or autoimmune.  

Just a few thoughts.

Bob

[twopack]

It is interesting that you mention herpes virus as a possible cause.  There is a conditon called Herpes Whitlow that causes burning, pain and fluid filled blisters on the fingers, often around the nail bed.  Are the bumps you describe a blistered type skin lesion or are they over the bone, like an arthritic area?  I'm not sure your other symptoms fit in with that though.

Good luck in your quest for relief and a diahnosis.
Mary