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i just found out i may have fibromyalgia, what do i expect?
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Default i just found out i may have fibromyalgia, what do i expect? - 04-01-2009, 10:48 PM

the past month I've felt random times of extreme pain. it usually only lasts for a couple of hours. there are times when i lay down on my side and soon that while side is in pain. the last week Ive been having experiencing mental confusion, such as knowing what i need to do when I'm at the bank, but i cant explain it to anyone else. its not like the words are on the tip of my tongue, they're just not there at all. my mind is a blank other than my frustration. i used to have severe headaches that would stop me from living. I'd just lay on the couch. I'm on melds for that but the pain and confusion is still there. will i get worse or stay the same with it being occasional pain? i don't know anything about this, other than people saying how much agony they are in and how that takes them out of life. what do i have to expect?
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Default 04-04-2009, 10:48 PM

I think you need to get a second opinion. Who diagnosed you? You need to see a hematologist to get a diagnosis, and if a hematologist did give you that diagnosis, I would be looking for a second opinion.

The new diagnostic criteria states that you must have had the pain for at least 3 months. You said that you've been in pain for 1 month.
The old diagnostic criteria states that you must have at least 11 out of 18 tender points. You don't say whether a doctor tested you for this.

There are other possible causes for the symptoms you have. I wouldn't just rest on a Fibromyalgia diagnosis, especially from just one doctor. Misdiagnosis is so high.

But regardless of the diagnosis, you need to get a good nights sleep, eat well and exercise moderately. You'll probably never be back to what you were before. The older we get the worse our cognitive functioning becomes anyway.

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Default 04-07-2009, 10:48 PM

how did you find out you might have FMs...did you have extensive blood tests? is there any possibility you are needs to persist..

look up Lyme Literate MD
are you sure its not MS or a vitamin deficiency or a hormonal or thyroid problem? or one of the many other things that cause these symptoms
I haven't heard of the DC criteria being changed..I've heard talk of it being changed....but the new criteria will mean a lot more false diagnoses ...

it should still be 11/18 tender points (possibly less..but still near 11)
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Default 04-12-2009, 10:48 PM

Garret, I feel ya! It took a long time for my diagnosis-7 yrs ago & 10 yrs of symptoms while not even thinking about FM. Of course back then it wasn't as accepted by as many Docs as now, & it was through PCP, Neuro & Rheum (after diagnosis I found Psyc for mood stabilizer) I finally got diagnosis.The VERY 1st things we ALL have to do because of mimicking symptoms in so many illnesses, is rule out everything that can be tested for. Then, if you are clear of the other things, you will have a more clear answer (although FM is not clear in itself). Believe me, if you look up what other things FM mimics, you will be happy to have FM instead (even though there is so much uncertainty about the disease). If you have already seen PCP & talked to them about what you are experiencing & concerns, they should have ordered major blood work & may prescribe you something that might work for you personally for symptoms (if you are still having any) like pain, mental fogginess or that blank mind & your moods. I cant stress to you enough how it isn't very wise to resort to opioid of any kind (for a number of reasons), even if a Doc wants to prescribe them (& I know too well how tempting it is), or even addicting drugs like Valium or annex because of the huge effects they both have on your body/brain. There is a medication I've taken for a couple years specifically for the symptoms (& right now that's all we can do), Savella. Example of mimicing.... on the 18th of Feb I had an "episode" like I've never experienced before of horrific muscle spasms all over my body & pain so severe that it took me to the floor in more pain than childbirth just like MS (which has since been ruled out again). An ambulance had to pick me up to er...where after they heard the words FM, the nurses basically treated me like I was faking pain. The Doc gave me morphin iv; it did absolutely nothing. Thankfully he saw the reactions in my husband & daughter, felt the knots under my skin (you may have very painful knots with FM flareup) & decided to give me a strong muscle relaxer iv. The major part of the spasms subsided, but took me over a week to stop tremoring & have had 2 days since then pain free (more or less) & out of the bed most of the day. If I can make a few suggestions to you during your waiting, testing & research for yourself because there are supplements & things you will need to do for yourself if it is FM (can you tell I am passionate about all this? LOL! & I have had too many agonizing yrs without knowledge)...Epsom Salt baths! I'd never had one till last week when someone from another site suggested it to me & I used an awesome Lavender scent; it helped tremendously at the time - it is SOMETHING anyway. Are you taking a good multivitamin? I suggest magnesium, B complex, Omega Fish Oil, Potassium, CoQ10, Vitamin D, Acetyl L-Carnitine & I could go on with all the supplements you can take; I take several now (cant hurt). If you have a good health food store, they should have a supplement section to help you if you need help. I will tell you that IF you ARE diagnosed (& the Rheum will prob be the final diagnosis), research LDN (low dose naltrexone) on this & the other site I mentioned. I started it today after trying Baclofen (for MS Neuro thought was cause of "episode", but that was ruled out again thank God) I suggest I hope they dont throw me out of here for sharing that! Anyway you can create yourself a profile & track symptoms, medical history, medications, mood, pain. It's a great tool for yourself & has print outs for doctors visits, graphs, & you update daily. You can hook up with groups & individuals who are taking the same med, experiencing the same symptoms, or researching themselves on a variety of illnesses/diseases. It's a really awesome site created for people who are really trying to help themselves. Anyway, I know I'm writing a book, but I just feel for you because I all too well know exactly what you are going through in the "not knowing" if you have it, what you have & what to expect while experiencing pain & brain fog. The thing is with FM, no one can tell you what to expect; we all are different in a lot of ways, but the same in ways too. That's why probably everyone you talk to will give you a little something different. I really suggest the building of your medical profile so you can really track things & research for yourself. Good luck. You can contact me if you'd like. Cindy
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Default 04-14-2009, 10:48 PM

I have Fibromyalgia -Vitamin D3 supplementation has cleared the constant muscle pain. I did high levels for 3 weeks & was pain free. I knocked the dose down to 2000Au's a day & a week later the pain was back. After restarting high levels, the pain is managed again after 3 days.

I personally did 35,000IOU per day for 2 months trying to refill my stores. It is highly recommended that you have your Vita.D levels tested but my research shows toxicity only at outrageous, long term levels.

I originally did B12 injections daily for a couple of years & then I tried givensnesings.Amand's protocol) for 10 years but discovered Vita.D3 supplementation last year & that has worked better than anything else!

Vitamin D3 is not a vitamin at all but a necessary hormone that effects the immune system, bones & nearly every aspect of health. Having low Vitamin D levels greatly increases risk of cancer, heart disease, diabetes, MS & being deficient can create or greatly exacerbate health problems. Many researchers claim that optimized vitamin D levels are more effective than a flu shot in preventing viral infections.

With Vitamin D3 deficiency becoming an epidemic, it is possible that upper atmosphere pollution is blocking the needed UVB light from the sun. Or simply that people are washing daily, if you wash skin exposed to the sun within 48 hours, you wash off the oils where the vitamin D production starts. In northern latitudes (above that of Atlanta, Georgia) the sun is at too low an angle for half the year to provide sufficient UV radiation. If even available, UVB rays are only accessible while the sun is directly overhead. Most people need to take vitamin D, especially seniors, as the ability to synthesize vitamin D in the skin declines with age.

With exposure to sunlight in the summer, the body can generate up to 20,000IOU of vitamin D per hour with no ill effects. In addition, no adverse effects have been seen with supplemental vitamin D intakes up to 10,000 IU daily.

Always take your vitamin D with a fat-containing meal to ensure absorption.

The prescription vitamin D supplements are the wrong type (ergocalciferol ). As warned by the National Institute of Health -

Luckily you can buy vitamin D3 (cholecalciferol) over the counter and the upper limits are extremely high. U.S. RDA are much too low. Current recommendations from researchers are for 35iu per pound - a 150# person needs minimum of 5250iu per day & the rda is 400iu. This amount is for minimal needs and does not replenish depleted stores.

I also highly recommend a low carb way of eating to allow the body to regenerate rather than degenerate.

Vitamin D deficiency may contribute to the wide set of disorders associated with metabolic syndrome (syndrome X), as well as to PCOS. In a study published in 2004, the authors saw a 60% improvement in insulin sensitivity in healthy, vitamin D replete adults

Dr. Joe Prendergast, an endocrinologist /diabetologist has managed over 1500 diabetic patients and, in the last decade, not one of his patients has had a stroke or heart attack. Only one has even been hospitalized! His secret?50,000 units of Vitamin D3 daily. Dr. Joe further reports:

* Reversal of advanced coronary disease
* Reversal of advanced lung disease
* Cure of multiple sclerosis
* Cure of amotrophic lateral sclerosis
* Regression of rheumatoid arthritis
* Improvement in allergies
* Control of many cancers
* Reversal of osteoporosis
* Prevention of influenza
* Cure of depression & other mental disorders
* Hashimoto?s hyperthyroidism

In summary, the evidence for safety and remarkable efficacy of Vitamin D3 suggests that virtually ALL adults should probably take 50,000 units of D3 daily. This is certainly true for those with virtually any illness.
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Default 04-19-2009, 10:48 PM

CFS, Fibromyalgia patients are often infected by another patient, via inhalation, but someone after a tick bite (dual infection - Lyme + CFS). In this critical first 2 month after infection, can be block by Tetracycline or Cephalosporin antibiotics (3-2x 500mg), but after that time treatment is more complicated. However for long time sick patients this treatment help (Wheldon or Marshal protocol), but not completely treat. Completely cure is on -
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