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The Chronic Pain Couch User Group
Searching 4 diagnosis and in BAD pain
About This Group:

This is a great site for anyone suffering from Chronic Pain or has a Family member or Friend who suffers. A place where you can tell your story, find others with similar conditions or pain, help someone in need, read up on the latest Chronic Pain treatments or simply sit for a while. Chronic Pain as we all know can be debilitating and relentless. It is not prejudice in any way, shape, or form. It can strike without warning and stay for life. The Chronic Pain Couch is a place designed for your comfort, and please note.. You don't have to suffer from chronic Pain to be a part of this community, we offer a variety of other topics as well. I truly hope that you will come and join us. And remember, there is never a need to worry whether or not your post has been read, a member or myself (Molly) are generally available to read and respond to all posts that come our way...... We are always here for you. Together We CAN Make A Difference in each others lives and how we manage day to day in coping with our relentless pain. Warmest regards, Mollyrae, founder of The Chronic Pain Couch.

Founded by Mollyrae on September 22, 2009
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Searching 4 diagnosis and in BAD pain

Glad to find this group....so....I am acronic pain patient due to the following story. It seems that the pain is symptom of something in my body. I have used alternatives like wobenzymes and all natural anti inflammitory, and a few others. Why is it that people do not care or seem to understand pain unless they have it? iT is very discourgaing and I am so tired of being treated like crap becuase the controlleds I am on. I am also, tired of feeling like nobody understands how I feel. Any responses are welcomed and appreciated.

Please anyone someone help I am lsing my medical coverage soon and need some answers. I went from being 160 lbs to 115 and have had 5 oral surgeries, before I have another one I need answers please!

I lived in a rural community and four years ago, I had a dental filling done imroperly, yes a dental filling started a snowball thats a avalnche. Failed root canal, cyst improperly removed, with no antibiotics at the time. Then Avelox, shot of Rochephin, then 72 hrs later horrible fever and sickness, treated with collidial silver. I trusted the wrong Dr. now, 5 oral surgeries later, am in need of another one. Bone graft in the jawbone and being told I need a major jaw reconstruction. I will give the cliff notes version. Been through many specialties and have so many issues I'll tell you what I can remember.

Have had PICC lines and I.v meds. Envanz (emitriptin)? Vorcanazole, rocephin 14 days piggy back, EVERY class of oral antibiotics except Vincya. Also, I have a neighbor who is VERY ill worse than me cancer survivor. She rcv. Vincaymycin for supposed "endocardidtis" Both of us are being jerked around, pushed off, left for dead. WE HAVN'T DIED, THANK GOD I AM ON A Mission.

SO, currently I have diagnosed with and suffer from:

atypical Trigeminal nuralgia, Cronic (chronic) EBV, Kidney Issues (recently) following a, VERY HIGH IGM level, amenima (that has come and gone,for myself and my friend) TMJ ( previous), damage to 5 cranial nerves, optic neuropathy, was told possible endocardidits, taccychardia, Celiac disease, had to have endometrial biopsy? a to why, shortness of breath, Unilateral edema, yes, been told its impossible foot and handswole up like a balloon, pain and swelling in lymphs, tingling and numbness in limbs, extreme fatigue, doccumented heptomegly of liver and spleen, um...sweilling of the face and neck, frequent puss like lesions in my throat( cultured not strep, bacterial and viral negative) dizzyness, falling out, damage to heart valves, many negative tests but no answers. I can NOT gain weight, night sweats, intermitten fevers, weight loss of over 30 lbs, with no sucess of weight gain regardless of nutition good and bad. Black eye ( on the side of my face that has issues) cronic (chronic) sinuisitis, cysts on breast, ovaries( friend) kidney myself, abnormal high and low blood pressure., memory loss, loss peferal vision, demylenizaion of optic nerve, hemifascial spasms, memrory loss, loss of congative abaility, suspected stroke, small superficial blood clot, B-12 deficency, HPV ( stage 1 ) colpo, cleared ?, Bone biopsy of one extracted tooth site reflected empty osseous lucuane, surrounded by granulation tissue, Pereferal blood smear results: anemia orgion uncertain, favors decreased bone marrow production...dru/toxin exposure/infection/neoplasia, nutritional deficiecny( i have great nutrtiton and take suppliments) chronic disease...wbc unremarkable, rbc has minimal anisopokiliocytosis w/ occasional elliptocytes, teardrop and polychromatic cells. Positive Mirobiology in mouth!! Also, in other pts in area C. freundii clpx Gram Negativie Bacilli Strep Pneumo. Suggested by microbiologist
Pepto strep.....anerobic bacteria Actincomycosis Isrealei, Atypical T.B.
osteophytosis on nfectious disease dr report, COXSACKIE A7-IGG high A-9 high a 16 high A 24 high, M PNEUMONIAE IGG ABS HIGH
COXSACKIE A7 IGG HIGH
COX............. A9 IGG HIGH
COX..............A16 IGG HIGH
COX..............A 24 HIGH
IGM'S NORMAL

M Pneumoniae IGG ABS huge high
M Pneumoniae IgM ABs minimal high


Negatives:
HIV, Hep A B C, Major General Oncology, nothing on blood cultures, Nuclear medicine, Normal TSH, 1 positive homonogenous ANA, other negatives, Herpes STD neg. Some fungalcultures, Rheumatoid Negthen slight positive,Esr usually low/normal, CRP usuallly low one or two normal, RPR non reactive, COXSAKIE IGM Neg quite a few more.......NO DR CAN TELL ME WHATS UP?

I am young, sickly, and am desperate for help

May be more can not think well please anyone can you help?

If not anyone have any suggestions on pain meds have gone through a bettery of them, but the problem is, they do not like to write for a young person.
1 Comment
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You poor thing..
I have not been able to post for help to others because I have been too sick with my neuropathy pain..I am not a dr. And do not understand your levels and medical problems and I can only offer that u are not alone in pain issues,..
One miserable day at a time? I know how that feels..there are great people on this forum who can help u feel not so alone..
That alone helped me!
I only hope I can get on here more often..
You have lots of labs and numbers that are way beyond me!
Hope you know we care!
Blesssings
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