Fibromyalgia (FM or FMS or Fibro) is a debilitating chronic syndrome (constellation of signs and symptoms) characterized by diffuse or specific muscle, joint, o...
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BACK AGAIN BEGGING FOR ADVICE PLEASE HELP
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I am sorry to everyone that was getting to know me and my disappearance I've not been able to hold my arms and neck up or sit long enough to be here. Since stopping cold turky CYMBALTA, my pain levels have doubled tripled, my neck is squeezing the life out of me, I cant bend over or look down without compression. My arms are like limp noodles and the spasms in my low back shoot upwards to flare the cervical. I went to my doctor today he knows so little about fibro I had no idea that I left in tears. He tried to put me back on cymb he is not the doctor that took me off it nor does he know why I had to stop it. The doctor that did never told me I would have withdrawal symptoms. The doc i saw today says he doesnt think I am having any since I started on 20 mg of prozac, Give me a break 20 mgs of prozac is such a low dose for someone that was on 60mgs of cymb for two years and asked to add something because the depression was too much. I used to be on over 90 mgs of prozac. So my doc told me I NEED TO LEARN TO LIVE WITH THE PAIN AFTER ALL IT'S JUST FIBRO, I WILL SEND YOU TO A PAIN SPECIALIST WHO WILL TEACH HOW TO BETTER LIVE WITH IT.
I said do you know that I have a buldging disk and stenosis. My other docs would do an xray every year. He is someone new I am seeing, he has never asked me questions, doesnt ask me if I need refills...I am SO EXHAUSTED OF 20 SOME ODD YEARS OF BEING TREATED LIKE IM SOME INSIPID POVERISHED, INADEQUATE FRUITCAKE BECAUSE I CAN'T LIVE WITH DIBILITATING PAIN FOR YEARS ON END. I WANT TO RUN HIM OVER WITH MY CAR FOR 20 YEARS AND THEN TELL HIM...HEY IT'S JUST PAIN LEARN TO LIVE WITH IT. I know these drugs are tearing my body apart and I dont have the money to go natural. My limbs feel like they have bugs crawling in them I cant sit still, cant sleep and then the next day its the opposite, how can he say I'm not having withdrawal, its not every day I cant sit still or I just go limp, or I lash out at everyone or pull my hair and sing then cry. I'm wearing a neck brace on my own without any doctors because I cant hold my head up long enough and then in an hour or two that stops working and I take it off.. I bought a total gym and it seems to be making weaker not stronger. Ive been trying to eat right and I only seem to be getting worse. My nerves are shot, I cant think straight. I rarely ever go out of the house and today I finally did it alone and got gas in my van only to find I could not speak coherently I ran out of the store feeling like an idiot. I couldnt' remember what I was doing or where I was going my mind is not working right, my memory is nearly gone even of my children. I'm trying to hang onto the memories of my mother who I lost a couple months ago at the same time trying not to cry anymore or over due remembering or thinking about it. This is the most I have been able to type and I fear I will soon not even be able to do this and lose all the communication I have with humanity its my only link, I have no family near me. I have to hurry the pain is coming in my neck and I am getting hot flashes with it then nausea the pain is just too much. WILL SOMEONE PLEASE TELL ME THESE THINGS AS MY TIME IS LIMITED...IM PRACTICALLY BEGGGING. 0. HAVE YOU HEAD SYMPTOMS LIKE ME, WEAKNESS IN ARMS, SEVERE SEVERE TIGHTENING BANDS OF MUSCLES SO TIGHT THEY SQUEEZE THE MUSLCES IN YOUR EYES AND YOU CANT KEEP YOUR EYES OPEN ALL THE WAY, YOU CANT BEND OVER TO PICK THINGS UP, USE YOUR ARMS DO MUCH OF ANYTHING, EVEN WEAR CLOTHES, I HAVE TO CUT EVERYTHING WITH ELASTIC, PRESSURE ON SKIN FROM EVERYTHING. SHOULDER MUSCLES FEEL LIKE THYE ARE ON FIRE ONE SIDE IS UP MORE THAN TH E OTHER IN A HUGE BULDGE ALWAYS THERE...LIDOCAINE PATCHES DEFY IT. 1. WHAT MEDS WORK THE BEST FOR YOU, SORRY I CANT SEARCH THE SITE 2. HOW DO YOU FIND A GOOD DOCTOR THAT HAS COMPASSION FOR FMS? MY INSURANCE WON'T PAY FOR ME TO DO INTERVIEWS AS I GO FROM DOCTOR TO DOCTOR LOOKING FOR HTE RIGHT ONE. I'VE ASKED THE RECEPTIONISTS BEFORE AND THEY EITHER CANT ANSWER ME ON FIBRO OR THEY SAY, SURE SHE HAS FIBRO PATIENTS OR HE SEES PEOPLE FOR THAT....THAT IS NOT ENOUGH. I HAVE NO FRIENDS AND THE FEW PEOPLE I DO KNOW THAT HAVE GOOD DOCTORS ARE NOT TAKING PATIENTS ANYMORE... 3. WHAT NATURAL MEDS HAVE YOU TRIED THAT WORK THE BEST..I HEARD OF SOMETHIN CALLED D-ROBULIN OR SOMETHING LIKE THAT GEE I CANT REMEMBER THANK YOU SUSAN IN TRAVERSE CITY Posted on 05/02/08, 06:05 pm |
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Can't answer all. I'd start d-ribose (NOW makes a cheaper version than vitality 101) and high dose mixed B vits. That will help with weakness and mood. You might also look on internet or phone book to find a holistic doc in your area. Try to get some PT for the rest of you. 
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it sounds as though you are having a major health crisis right now. If your insurance covers an ER visit, I would go in. They can accomplish a few things you aren't getting from your regular provider: immediate relief for the debilitating pain, and the chance to get some referalls to the right doc. Hospital folks tend to know who the best docs are. You may also want to ask to speak to the hospital social worker - they are trained to listen and connect people with the resources they need outside the hospital. I am so sad to hear how much distress you are in, and hope these small suggestions help in some way.
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Susan, I am so sorry that you
are having such a hard time. Do you have a Cleveland Clinic or Mayo Clinic near you? They seem to have more knowledgable doctors and know the latest on different diseases. I don't know why you were taken off Cymbalta, but my PCP told me it was a horrible drug and to never take it. Glad you are off it. Hope things improve for you. Sara
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I saw a family doctor, a rheumotologist to no relief at all. My pain specialist put me on Lyrica 150 mg twice a day and I feel better. She also understands fibro which is a big help.
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0. ABSOLUTELY. All you described and possibly more. No RX meds worked for me. What has worked the best so far, is my new supplements..calcium, magnesium, vitamin D, D-Ribose, 5-HTP (need to be closely monitored with this one if already taking anti-depressants), garlic, wellness cap, fish oil and L-glutamate. I may add GABA or SAMe today. Not sure, will ask segulley on the natural alternatives board.
1. see above. 2. I found a great doctor finally after 22 years. They are out there and getting better. I had given up on docs and doing the natural solutions when I found her. 3. see above.
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For everyone looking for a solution to Fibromyalgia pain:
GUAI PROTOCOL. brass tacks: you can pick it up over the counter as "mucinex" or cough expectorant/mucus relief generically. Active ingredient is: "guaifenesin" What it does: Something about flushing the phosphates out of the cells in your body (I take about 2000mg a day, and have little to no pain now). Apparently a doctor in California did some studies/trials on this as an FMS treatment, but the research was rejected by the medical community for some stupid reason.. so it never caught on. I was in so much pain about 4 months ago, that I scoured the internet, until I found a youtube video of a woman in England whom swears by this; she said that in 4 days, her pain was almost complete gone. So I went to walgreens the next day, and started a regimen. And within 2 days, I started to notice a difference... Anyway... the drug is over the counter (no prescription needed), and is called "guaifenesin". Trust me, it works. I think anywhere from 800mg-2400mg a day is fine, depending on what works for you. I was on Lyrica, and found out it didn't work for me even at $300 a bottle. I don't have a financial interest in any of these products, I'm just an FMS patient whom was desperate and wants to share what worked for him. So I'm basically posting this all over this board to see if it catches on.. Google it yourself! Cheers,
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