In Pain and Frustrated

[hojo]

I'm a 31 yr old male. About 10 months ago I started feeling retrosternal type pain. It was sharp yet mild and occured occasionally for 3 months. One day it progressed into burning, aching, painful widespread muscle pain. I also had facial flushing, rapid pulse, high blood pressure and felt miserable for 2 months following.

Seen many GP's, neurologist, allergist and rheumatologist and they all give up. Every test I've had ANA, CK, sed rate, CBC, Lyme, heavy metals, glucose, calcium, thyroid, hepatic function, histamine serum, etc. has been COMPLETELY NORMAL. Also had an EMG done by Mt Carmel hospital and I am told it was normal. I do not have loss of motor coordination, weakness, buzzing, tingling, or anything. My energy level is still very good. I do experience a great deal of fasciculations (widespread twitching).

Since last Feb (and current today) my symptoms are:

-widespread pain (everywhere, in my hands, fingers, arms, legs, face, etc). Pain killers do absolutely nothing.
-facial pain
-mild to moderate headaches
-occasional 'heat' feeling on my face, like I have a mild sunburn or something, although I don't

My only relief is Zanaflex and hot baths. The pain seemed to start after what appeared to be an allergic drug reaction with Zyrtec, a benign (I am told) allergy medicine.

My question is, is this a neuromuscular disease reulting from a drug reaction or something? Every doctor I've spoken to tells me its a virus. But I know (and one even revealed) that when a doctor says its a virus, thats lingo for "I have no idea". ANY IDEAS??

[CCF-Neuro-M.D.-JT]

Sorry to hear about your symptoms. It is difficult to localize whole body pain to one particular part of the nervous system and I have never heard of an allergic reaction causing longstanding chronic pain. Except for the twitching (if they were fasciculations, they would should up as such on the EMG - not all twitching is fasciculation), you do not seem to have any neuromuscular symptoms. The extensive workup is somewhat reassuring, but the symptoms of flushing, rapid pulse and high blood pressure are concerning for something else such as a pheochromacytoma which is an adrenal gland problem that puts out too much adrenaline. This can account for the warm feeling in the face, headaches, and bloodpressure./heart rate changes. The syndrome is evaluated with blood and urine tests for catecholamine levels.

A chest Xray may also be helpful to take a closer look at the chest pain. Consider a second opinion at a major academic or clinical center by starting with an internist. If you feel that there;s nothing more you want to do diagnostically, then consider going to a special pain clinic for management of your symptoms. Good luck,.

[hojo]

Thanks for the info. I haven't had facial flushing, rapid pulse, high blood pressure, or palpitations for about 4 months now. Those symptoms seemed to have tapered off on their own. BP and pulse are back to normal levels. But I do continue to have widespread pain and headaches with occasional light facial pain. The pain feels like nerve pain, it comes and goes in my hands, fingers, legs, feet,etc. I also have muscle pain and soreness to accompany it but I personally feel its a nerve issue. At times I've been convinced the pain has originated from nerves and not muscle tissue.

I read about the B12 deficiency problems on this board and how it could cause similar symptoms and I have found that taking a daily B12 supplement has had a major improvement in my health. I am not 'back to normal' just yet, but within 48 hours I no longer have to take any pain medicine. My symptoms have precipitously declined. I take my Zanaflex at night which I feel is still beneficial. I am going to see my GP in a week to have my B12 serum level measured to see if this may be what I am looking for. If this turns out to be the answer I will kick myself because I have suffered horribly over the last 10 months.

[Lenna]

Hi hogo

I can't believe I have found someone with similar symptoms.I experience unusual burning, tingling, prickling throughout the body, but it all started with what felt like joint swelling and pain similar to fibromyalgia. That has disapated to some degree; now I have sharp shooting pains and the parenthesis. My problem is it is on both sides of the body and I get it everywhere. I get the slight burn or tingly sensation on my face but it is right around the chin on both sides like a chin strap.  The only unmoving and occuring pain I have is what feels like a sciatic nerve pinch down right leg and a sharp shooting pain down left arm. I have been tested for everything and am having my MRI in May. Among the possibilities not ruled out in my case are M.S, Sarcoidosis and systemic Lupus. I am wondering about vasculitis. I have a scar on my retina that looks like an old hemmorage from a burst blood vessel. It is not active and the only visual damage is floaters. I have had the pain symptoms everyday since December. Waiting for a diagnosis is very frustrating and scary. I hope you are feeling much better and let me know if you find anything out. I am very interested in your case.

Thanks, Lenna

[hojo]

Just a followup, that the B12 isn't my problem but does seem to help to some degree with the pain and twitching. Calcium, magnesium, zinc and B12 all seem to play a beneficial role but I am still having a lot of pain occasionally throughout my entire body. I also continue to take Zanaflex when needed. Proper rest and hot baths are pretty important also.

At the advice of the neurologist on this board I am having my catecholamine levels examined through blood and 24 hr urine test. I will post an update when I get the results.

[krisiluttinen]

here is something that I'm going through:



Hi, I'm 27 years old and last year in October 2001 I started having a stomach pain/disturbance that ended up in acid reflux (U know the gnawing pain in your throath that feels as if a semi-tire spinning slowly) . I took Prevacid and it got fixed. 2 months later my symptoms started:

1. Pain in the abdomen area (left and right) and a feeling of nausea. I feel as if I've been poisioned 1.5 months of constant sickness. Went to doctors (same routine depressed,  it's in your head etc.) I also started to have hypertension and panic and depressive attacks.
Not because I was unhappy but due to the sickness.
I also had a 38 hours insomnia that accompanied all of this. I knew then that I'm about to step into something very unormal with my body. I work out and I'm in good shape so this is not an issue.

2. Not much later my nausea started to expand and I started to have some unexplained pains inside my head just as electrical pulses and sickening pressure at the base of my skull that felt as if I'm about to faint. The headache seems to be worsened after meals. I also had upper/lower jaw pain that was running through my teeth (randomly) as if I had taken severe bites out of ICE/LEMON. This is very weird since I was never sick in my life. I've been on blood pressure medication and serotonium resoration (paxil) I still believe that all this malfunctions are comming from the  middle of my body (abdomen area) I don't know if I have IBS or what in the world I have. It seems that if I allow air into my stomach and expunge it out I get a little relief (that one needs practice :-)) I've been in this condition for about 8 months already and still don't know what's going on. #2 also looks loose and not like it used to be before. I'm also affraid to drink water (paranoia of lead poisoning etc) Diet coke seems ok.

3. February 2002, I started to have muscle spasms and involuntary twiches (small scale). When the nausea was severe; which it was for me for about 1.5 month, all I did is sit around and do absolutely nothing. I looked ok from the outside but something very weird was going on inside.  I'm in good shape and nothing is visible from the outside. I did notice when I had severe pains inside my brain that my pupils were contracting and expanding visibly like my heart beat. Very odd.

4. Latest news, March 2002 now I have something new. Pain in my head is 80% less and the new adition is I get dizzy as if someone unplugs me for just a second. I get a sensation of motion sickness that lasts for just a fraction of a second and comes at random times.
My teeth only hurt when I go to sleep (upper rabbit teeth) they feel as if someone is applying current to them and mostly when I lay on my back. What in the world is wrong with me.

5. I started trying pot as some friend suggested. Yes it does help the nausea (more like it blocks it) but I get the "current" like pain inside my skull and the jaw/teeth pain instantly after smoking. This seems to be triggered by the weed. It does help me go through the night but with these side effects.
I don't want to smoke weed, I'm not a drinker nor a smoker. Nausea seems to come and go and sometimes i feel sharp stabs around the liver area and sometimes in the opposed side in the pancreas area. Most of the time when I'm nausiated it comes from those two places.
I did notice that if I interact and do things the pain goes in the background but I think that's about it. I just forget about it. I'm already sick entire of this weird illness. If anyone has any idea what's going on plz e-mail me.

QUICK DESCRIPTION OF MY SYMPTOMS.

A. Pain in the spleen area.
B. Pain in the pancreas area.
C. Pain in the middle upper abdomen.
D. Pain in the liver area.
E. Heat flashes.
F. Weird discomfort.
G. Bowels don't look normal, very loose and lots of      mucus. Long time since hard healty feces. only 10% of time they look ok.
H. Trembling (I solder electronics every once in a while)
and just found out that I can no longer hold the soldering iron steady (I'm 27)
I. Vision blurring... not all the time.
J. Stabbing pain in the eyes.
K. Mild background pain at the base inside the skull daily.
L. Stomach acid. (does not come up my esophagus)
M. Motion sickness without being on anything.
N. Sex drive down to 0.
O. Even when I'm ok I still feel the nausea in the background just waiting to get me.
P. That lead heavy pressure in the back of my skull radiating through my gums and snapping & popping.

The only thing I can confess is that I do go to sleep very late at nights (computer geek) and being doing it for about 8 years. Still I've never had anything like this.
The worst is that doctors don't know what this is.

Speculation... IT's being  happening to many people lately starting in year 1999' and up.

Anyone that experiences these symptoms please feel free to e-mail me to discuss them further or possibly to develop a pattern of everyone that has this, we might find out what's triggering these. Dust, detergents, animals, water, athmosphere changes, going outside, smoking marijuana, we need to know.
Unless the government is restoring the country with our medicine money.



****************UPDATE 05/01/02*****************

Latest Update, my nausea/ibs symptoms subsided I now experience the back/base of the skull pain/pressure and random pulling on my teeth upper and lower. I still have pains left & right of my upper abdomen. I also experince extreme teeth sensitivity only in my upper "rabbit" teeth but only when laying on my back.
I can wake up with no pain then after any meal or a glass of water I instantly feel the pulling/lead sensation in the back/base of my skull. Also when this occurs I feel sounds as if wafers (popping & snapping sounds) slowly squashed in the back of my head at the base. When this inflating feeling occurs it stops just seconds from being intolerable I also feel as if air is being released through my nose. Activity seems to make these symptoms less painfull and sometimes if I get caught up in a discussion I even forget about them.
It's still verry annoying since I had no health problems prior to October 2001.
I still don't know what's wrong nor my doc.

HELP!!  


l8r and good luck to everyone and I'll pray for all of us this condition is not something to be unserious about.
I'd rather have stiches that this ****.

***@****

[pollikcm]

Wow, I am also so flabergasted that i share so many common symptoms which have been unexplained for so long.... but, so many sufffering similarily.  I have had chronic back, shoulder, hip, knee, wrist, and neck pain for many years. I am only 44 female.  I started having pain at early age of 13.... it has become progressively worse and more debilitating....I had some history of what i thought was minor injury to possibly provoke later pain but, my xrays come up clear..... no sign of explainable diagnosis.  I am tired of being treated as though I am making up the pain symptoms... Sure I suffered depression and an eating disorder in my younger days.... but, I am not in that place anymore and havent been for a long time. I have a family to care for and young children.... I dont have time or energy to put towards pain management..... I usually grin and bare it
I have gone to my dr. discussed pain.. I take vioxx , when my back is "out" so to speak in terrible unrelenting pain I take a muscle relaxant flexeral.... and robaxsisol anti inflamatory drugs...  They help, but not really significantly.  I wass to a rheumatoligist years ago.... He said it was Fibrositis.... Now i dont even see this term anymore..... closest i see is fibromalaysia... but, i saw a dr. who says i dont have this.  I did injure  my shoulder years ago playing volleyball.... my pyhysio therapists says it is likely tendanitis... and somewhat of a frozen shoulder.. I t is painful in arching backwards.. and i cant lift the arm up above my head.... left arm... also left wrist... I hurt it when i was 14... now it is painful and weak and goes numb in fingers especially small finger when i raise my arm.  The arm goes numb and painful too.  My hips are very pained and my knees . sometimes severe pain on certaom movements..like stairs... I also had an accident toboggoning which cracked my tailbone... and bent it. I had surgery to remove the coxix.  Since then the lower back has had some serious trouble.  I have a family history of severe back pain and injury...... Is it possible a heredity exists here. Out of five seven syblings three brothers had back surgery following injury at work..... my father also had this kind of injury and had surgery. My mother has a curved spine... my two sisters have back pain but not as bad as mine has been...... The doctor says i dont have lupus... thank god...... but I live in constant pain....anyway sorry about the long post.... my dr. wont send me to a specialist .... i had xrays and blood work, i go to physio therapy...... i used to have b12 injections for deficiency but now supposedly dont need them..... i have alergies (allergies).... heart palpitations too..... dr. says may be coffee related... hmm... I want an MRI but doctor wont send me..... I believe i have nerve damage causing sciatica..... i believe i had a herniated disc and occasionally it gets bad again....and possibly other problem with tissue or muscle or tendons etc not detected by regular xrays... what should i do....

[huglbugl73]

This is insane...why are we all soooo sick?!
I also had a severe allergic reaction to Zyrtec...and about 2mths later I was diagnosed with anxiety disorder! Had severe chest pain...hot, red face all of a sudden...shortness of breath, shakes. I never considered the 2 could be related...but I had never had an attack like that befor. Though I have had sudden hot flushes for no apparent reason since I was 13yrs old. I am 29, and have had numorous illnesses in my life. This makes it hard to know what is related to what!
E-mail me if you would like to talk ***@****
Good luck!