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About Me
unduki
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About Me
LYRICA WITHDRAWAL I had the initial loopiness and leg swelling but then I felt almost normal again - for 8-10 months. I was working out 5-6 days per week at the gym and got so strong. Then I took a pleasant yet stressful trip and just after my return, my lungs suddenly felt like they were just worn out. I would get dizzy from lack of oxygen just walking from my bed to the toilet. No wheezing. My muscles started feeling like they were encased in plastic and I became suicidal. Since I KNOW I'm not suicidal, I did some checking and found it could be the Lyrica. Coming to DS really helped with that because I only started checking when another DS'er mentioned she had also become suicidal after a lung infection. I was quite submerged in fog at that point, seriously discussing with myself the selfishness of taking up space on the planet when I'm of so little value. So, I quit. I was taking 300 mg. per day and started tapering off 100 mg per day, each week. I'm on day 14 of no Lyrica at all and I'm starting to remember what FM feels like. I really had wanted to forget but no magic bullet for me. I don't think it's going to work for anyone long term. That you can get hooked on it and have to go through horrible withdrawals with only a few weeks use really makes me angry. The FDA should never have approved this drug, not with so many dangerous side effects suffered by most of the people who take it.. (it only helps an estimated 15%) My Infectious Disease Specialist has me on Valtrex therapy. Hopefully, it's going to work for me. I've read that it doesn't work for everyone. If that's the case, I'm going to demand to be tested for Candida. I'm refusing to live a half life.
LYRICA WITHDRAWAL I had the initial loopiness and leg swelling but then I felt almost normal again - for 8-10 months. I was working out 5-6 days per week at the gym and got so strong. Then I took a pleasant yet stressful trip and just after my return, my lungs suddenly felt like they were just worn out. I would get dizzy from lack of oxygen just walking from my bed to the toilet. No wheezing. My muscles started feeling like they were encased in plastic and I became suicidal. Since I KNOW I'm not
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Interests
I'm interested in finding a friggin' cure for this damned 'syndrome.' My Working Theory: The virus, or set of viruses are all in the herpes family. I've tested positive for EBV and CMV but then there's HHV-6 - another herpes that some researchers think is responsible for CFS/FM. After it gets us, It quickly leaves our blood and invades our tissues (which is why there is no cheap blood or urine test - gotta do tissue samples - pick the right one $$$) It's estimated that most humans get the virus by their 6th year but some never develop any symptoms. (Like, everyone gets chicken pox but not everyone gets shingles) It can lie dormant for up to 30 years and is usually (I would like to say always) triggered by trauma, physical or emotional. The virus invades brain tissue and then starts to filter downward starting at the HPA Axis (where the hypothalamus, pituitary and adrenal glands meet) (hormonal glands...) and degrade cells from there. I think it's like the balls in a Pachinko game the way the destructive path of the virus is affected by one's individual genetic and environmental realities. This is where it gets wild - This virus or group of viruses could be responsible for things like, schizophrenia, bi-polar disorder, PMS, lupus, ms, autism , epilepsy, Parkinson's, and a whole lot more that I've never heard of before. I still maintain my conspiracy theory of the mutated virus bio-weapon experiment gone haywire. In any case, my Infectious Disease specialist prescribed Valtrex, 4 grams per day, to arrest the virus. I'm only taking 3. He says the virus replaces the NADH so when the Valtrex kills the virus, I need to replace the NADH. So, I'm taking that. He also told me to take 100 mg of co-Q10, twice daily. I'm a bit fuzzy on why but it has something to do with the fact that co-Q10 is fat soluble and enables the whole process. He also said something about the mitochondria - perhaps the mitochondria is damaged by the virus and the co-Q10 repairs it. Studies have shown that co-Q10 actually regenerates tissue.
I'm interested in finding a friggin' cure for this damned 'syndrome.' My Working Theory: The virus, or
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Hugbook
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wishing you a good day
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You asked the same questions that I had.....whomever made up this day, was a little twisted in the head, I think.
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I'm on Metroprolol. Why did you have to go off it? Did the doctor explain why? Now I'm concerned. Hope you feel better soon. Hugs Nancy
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"I'm really sick of people claiming they once had CFS/FM but were cured and I can be cured too if I only buy their damn book or think they way they say I should."
When I read that guy's post I just about died. Then I saw yours and laughed! Thanks for making me smile when I was feeling like choking that dude.
carry on.
katy-
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Unduki, your chickens have very good taste in books. I love Vonegut, Do you read in English or Chicken...or are they Russian? I did not know, until recently, that most chickens are russian around all the time because they are Russian. But hey, I live and learn...
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Support Groups
Close Fibromyalgia
I've had FM (diagnosed) for 17 years now. No family support. Husband cheated, I got sicker, I kicked him out and he left me with 4 kids, an STD and no support. I started my own business, lost it, started another, lost that, finished raising the kids started another - a farmers' market with a partner this time so that when I get sick, she can keep it going until I get better. That was STOLEN out from under me so now I'm floating free and fearing homelessness - hoping for SSI approval.
Treatments
- 5-HTP Too Soon to Tell
- Cyclobenzaprine Not Working
- Yikes! The GREAT DEPRESSION with some mania thrown in for total destruction. Not for me!
- Guaifenesin Working / Worked
- I try not to go a day without taking 200 mg. twice.
- Lyrica Not Working
- Took Lyrica for 13 mos. Once I got over the leg swelling, it worked well until I got a lung infection, bedridden for 5 months. Suicidal with vision blurred, I quit slowly. It took 5 weeks of Hell. Lyrica is poison and should never have been approved due to addiction and horrible withdrawal. It took two weeks from the day I took my last one for all the painful symptoms to subside. The mysterious lung infection finally went away Lyrica. I gained 50 lbs in 6 mos.
- Morphine Not Working
- I am allergic to ALL opiates. I have severe hallucinations.
- Neurontin Somewhat Helpful
- It kind of worked for awhile but then the side effects became overwhelming.
- Ultram Not Working
- too much for me
- Vitamin B12 Working / Worked
- I think it helps with the energy. Keeps the mosquitos away...
- Zanaflex Not Working
- Anti-Depressants DO NOT work for me. Side effects overwhelming.
- Valtrex Somewhat Helpful
- I began by taking 1 Gram 3 times per day. My doctor had prescribed 4 times per day. At first I think I had some extra pain and misery from virus die off then nothing. About two months into it I felt like my fibromyalgia issues had greatly subsided. I didnt feel so sickly and fluish.
- Topamax Not Working
- I began with 25 mg. at night. Right away I felt high. This subsided just in time to add the second 25 mg in the morning 7 days later. When it came time to add the second evening dose I waited a few more days because I was so loopy. I took the second evening dose for four days and decided to quit. My right eyebrow started twitching throughout the day and I had a new kind of headache. I couldnt finish sentences or even think of words. I had to stop driving.
- Atkins Diet Somewhat Helpful
- I think this is helping with my Epilepsy well wee. Im couldnt tolerate Lyrica or Topamax so maybe this is the way to go.
Close Autism / Autism Spectrum
I'm the aunt of an autistic boy and I want to better understand. I also scored 30 on an AQ test... I'm not totally sure of what that means but I have always had issues with fitting in.
Open Chronic Fatigue Syndrome
I have CFS
Treatments
- Valtrex Too Soon to Tell
- Im better but Ive hit a plateau and the fatigue seems to be worse than usual.
