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NevRgiveUp 07-06-2004 04:51 PM

Chronic Pain Undiagnosed? Any Advice?
As I was continuing my endless search on Jeeves for something that would help me find an answer I came across this site. I am new, so please bear with me.

My story. (I apologize for it being long, but I thought the details might help someone think of something that has not been tried yet)

On 6/25/03 I had car accident. My right shoulder and left knee hurt for a couple days and then the pain went away, so I never bothered going to a doctor. Around Mid August 2004, while doing yard work, a friend of mine was spraying bug repelanton his arms, and unknown to him or I, some of it got into my drink. When I took a drink, I swallowed some of it and spit the rest out.

Within 45 minutes, I got extremley nausious. When I woke up the next morning, my throat was sore and I had completley lost my voice. I went to my doctor, Strep test was neg, so she put me on antibiotics and told me to call her if it continued or got worse. After 3 days I was better, however, I began to have pain in my hands. I was helping a friend remodel a house, so I just figured maybe I was feeling the effects of age.

Within 3 weeks, the pain was now throughout my entire body. Every part that moves has pain. Neck, Shoulders, arms, hands, legs, toes, the pain is constant and sometimes spikes. I went to my doctore, she checked me for lyme, lupus, etc, and gave me more antibiotics and pain meds.

All tests came back neg, and when asked if this could be related to the car accident or the bug repelant she said no. I would have had symptoms sooner if it was related to the car accident, and I didn't drink enough of the repelant for it to do anything to me.

She tried to treat my symptoms with Loratab (didn't work) Vicadin (nada) Darvacet (nope) Percocet (very little releif), after 4 months of percoset, we decided to go the nonnarcotic route. Vioxx, Bextra, Ultracet, Soma, Nothing!

Full bone scan revealed NO Arthritis. Went to a Nerologist, had an EMG, minor carpol in both hands, but nothing that would cause all my pain. Had a spinal tap to test for Guilliam Barre Syndrome, doctor said nothing wrong there. I begged him for an mri, byut he said I didn't need one. After 3 weeks of begging him, he caved. The MRI showed a bonespur at C5-C6 with a slight impigment on the nerve. Mild dessication of L2-L3 disc. Hypertrophy in discs L5-S1. (Prior lamondectomy L5-L4 when I was 15)

Nerologist says this explains some of the pain but not all of it and not to the degree of severity that I descibe. He refers me to a pain clinic. I have 2 cervical injections (They don't help, and the second injection caused my whole upper body to lock up (Another trip to the ER)

In March, I am still without a diagnosis, getting worse, can't work and can't collect disability. Wouldn't be so bad if I was alone, but I am married and we have 3 children. Now I am dealing with major stress as well.

March 25th I get a kidney stone, I pass it 4 days later. I then go in for a Milagram. I take the medication prescibed to me, because i am alergic to Iodine, and STILL wind up getting Spinal Menengitis from the dye. This past june I got another kidney stone, this one was 5mm.

It is now july I still have the same joint and muscle pain, constant headaches, and still no diagnosis.

I am hoping that someone might tell me where to look for answers. My Doctor, neurologist, rhuemotolist etc, all say that there is no pathology for this pain. Fibro was ruled out because my pain is more in the joints then muscle.

I have never suffered pain like this before and in my 22 years in the work force I have never been unable to work due to an illness, so I know something is wrong I just don't know how to find it.

Anything you can think of would be appreciated.

Frustrated, and stressed, but still hopeful!


tat888 07-06-2004 05:37 PM

Re: Chronic Pain Undiagnosed? Any Advice?
I certainly can relate. Multiple injuries work and auto, and C4567 herniations and nerve root impingment, raising a premie alone, unable to use arms well, trying for disability twice over the past 10 years, unable to work for several years now. I worked as a nurse. fibromyalgia first diagnosed in 1986 when its was first starting to be considered or named, but then the diagnosis was taken away, said I don't have it. Well chronic pain is there but no treatment but drugs which clog my system. If you are too young meaning under 50, and educated forget about disability. Now if you take the mental route you might be able to get somewhere but its a long process. People I know who got it under 50 played the mental game, many who embellished alot.

Its frustrating when you have difficulties such as these to convince others, and the sad part is there isn't much to gain by doing this because ultimately all it will get you is either a mental label, and medications. and that doesn't really help.

Once your body has to fight pain for a long time, that stress affects your other systems. I became sensitive to drugs and chemicals and now have auto immune problems. But they attribute it to aging, acceptable for someone over 40, get use to it they say. I get vertigo and nauseated from my neck but they claim nothing is wrong with it besides those bad cervical discs. Why they don't acknowledge it affects my head???

Atleast you were tested they wouldn't even test me for Epstein Barr or Hep C. But I will say if I were you I would do something about those bones spurs, I have a few in the neck, so I started to take apple cider vinegar with honey and water whenever I think of it. Obviously you create these calcifications especially having kidney stones. I would check into it if I were you. eventually they will settle in the muscles and the ACV has been known to clear these up. the story goes they use to give it to old chickens before they slaughtered them, and they were as tender if not more tender than the young chickens. the acid/base environment affects the deposition of bone etc. worth a try and cheap. check out the bragg site, they make the best stuff.

NevRgiveUp 07-06-2004 05:51 PM

Re: Chronic Pain Undiagnosed? Any Advice?
Thank you for your post.

I guess I can understand why some people would get "creative" to get disability in order to provide for their familes, however, my convictions don't allow me to do that.

I have taken myself off all meds. I just take 1x soma, 3 x Tylenol, and 2 simply sleep at bedtime. That gets me about 3-4 hours of sleep. But at least i'm not polluting my system as much.

I have a great support system, so my stress and depression is kept from consumming me. One thing that disturbs me is, I'm only 40 now, if this continues to go undiagnosed and untreated, what will lfe look like in 5 more years. I can hardly get around as it is now, and when I do get out, I can't stand, walk or sit from more than and hour before I have to lay down.

Thanks again for your suggestions, when I have my follow-up with my doctor I will find out about the stones and the spurs.

injured betty 07-06-2004 08:47 PM

Re: Chronic Pain Undiagnosed? Any Advice?
When they couldn;t figure it out yet kept giving you pain meds and anti-biotics I would have looked elsewhere. They are called practicing physicians for a reason. It has taken years to decipher what my problems were and I had to do the digging on my own.

The way that I look at it, we are guinea pigs. The doctors are paid only because they hold the keys to the medicine cabinets. They run tests that cost an arm and a leg, they try different things, but they really don't know what they are doing most of the time.

It is too bad that there is no clear indicator from testing that can prove pain. My husband had to have an EMG in his neck to prove that he had nerve problems. They are still not sure how to solve them now that they have identified them.

I feel for you. I have just about had it with doctors. I nod my head, fill the prescriptions and stash them away, and then try non-traditional methods for my pain.

What ever you do, don't take any more anti-biotics than you need to. There are so many of them in our meat now that soon we will not be able to fight off infections when we need to.

I would be leary of any doctor who gave me anti-biotics without showing me an active culture of what he is trying to kill off.

NevRgiveUp 07-08-2004 07:29 AM

Re: Chronic Pain Undiagnosed? Any Advice?
[QUOTE=injured betty]When they couldn;t figure it out yet kept giving you pain meds and anti-biotics I would have looked elsewhere. They are called practicing physicians for a reason. It has taken years to decipher what my problems were and I had to do the digging on my own. QUOTE]

Thanks Betty. I totally agree with you.

I only take 1 soma, 3 Tylenol and a dose of simply sleep at bedtime, it's the only way i can get 4 hours of unitterrupted sleep. All of my other meds are in a box!

I would always ask the doctors "why does the left side of my head and neck hurt more when only the nerve on the right is pinched by the buldging disc?"

Their answer "I don't know"

Looking for answers on my own I came across TMJ Disorder. I go to the dentist, only to find out that I have 3 wisdom teeth that need to come out, 2 of which are laying under my jawbone.

Here's the kicker, the 2 that are under my jawbone are on the left side, which explains that pain. I have to talk to the surgeon about the TMJ disorder.

So at least I have the head pain figured out. It's only a matter of time before I get the rest of the body dianosed.

Thanks for your post!
My next move is to have my thyroid checked and then an allergist.

ticker 07-08-2004 06:24 PM

Re: Chronic Pain Undiagnosed? Any Advice?
NevRgiveUp, I highly recommend that you get evaluated by a Lyme knowledgeable doctor. There are only a handful in the country. To me your symptoms sound like they could be from Lyme. No test is completely reliable. A knowledgeable doctor will consider your entire history and not rely solely on test results.

Often, people can fight off a Lyme infection until their immune system is stressed in some way--accident, divorce etc. This may be what happened in your case. Also, you said you had done some yard work. You may have been bitten by a tick without knowing it.

For more information on Lyme disease, read the "Lyme Disease Information" post on the Lyme forum at this site. Where do you live? Let me know what state you are in and I will tell you the name of any Lyme doctor I know of in your area.

Keep searching, you will find answers. As your name says, never give up!

NevRgiveUp 07-09-2004 09:25 AM

Re: Chronic Pain Undiagnosed? Any Advice?
Thanks Ticker,

If you have specific knowledge about a doctor that might be able to help me, I'll try anything.

I live in *******, Georgia. I have been tested for Lyme via blood work and my doctor told me the test was neg. She did put me on an antibiotic used for Lyme "Just in case".

I appreciate any information you can give.

Thank you very much!

ticker 07-09-2004 05:28 PM

Re: Chronic Pain Undiagnosed? Any Advice?
Hi NevRgiveUp, I do not know of any Lyme doctors in GA. The closest to you that I know of is either in Temple Terrace, FL (near Tampa) or Huntersville, NC. If you would like one of these doctors names, just let me know.

I suggest getting copies of your Lyme test. The ELISA or titer is usually the one most doctors run first. Although no Lyme test is completely reliable, I beieve this one is the least reliable.

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