Fibromylga (Page 2)

otcclass: vanderk86:
I appreciate the "friendly advice" but you know nothing about Fibro and how much it hurts. Just don't go around saying it is in people's head and that you can get rid of it just by doing simple exercises or whatever. You say you like to read.. Well, read up on Fibro and see how terrible a disease it is and how much it truly does hurt a person. then maybe you can give some more "friendly advice".

vanderk86: Well if it's soo bad.... How about a Thorazine drip? Or a lobotomy even. If you're soo desperate and so informed... Why does your husband still suffer? If these "exercises" are mumbo jumbo?

otcclass: vanderk86:
for one, if you must know, we can not afford any expensive medication, and for two all the medication he has tried has made it so he can not think clearly and he did not like that.

mayjayran: you are a complete moron. AS i said unless you are a medical expert keep your mouth shut about things you know nothing about. I t is not all in my mind-it is real. end of conversation!

otcclass: Mary:
Thank you

vanderk86: These... Are Cheap and Don't interfere with thinking.
1.Magnesium
2.Vitamin D
3.S-adenosylmethionine

Second...
These exercises help the brain control the body. Much like you would work with a rehab patient learning to walk with a prosthetic leg.

Meditation, Tai Chi & Yoga.

If it does not work... What do you have to lose?
Time? 10$. Something to think about.

vanderk86: Your Medical "Experts", if you dare call them that... Have done a great job. So quit complaining. Your Doctor can write you another prescription for your next drug induced coma.

otcclass: vanderk86:

S-adenosylmethionine help fight depression, liver disease, and the pain of osteoarthritis not anything to do with Fibro.

Vitamin D plays an important role in the maintenance of organ systems

Magnesium has been implicated in the development of a number of human illnesses such as asthma, osteoporosis, and ADHD.

vanderk86: "Jacobsen S, Danneskiold-Samsøe B, Andersen RB.
Department of Rheumatology, Frederiksberg Hospital, Copenhagen, Denmark.

S-adenosylmethionine is a relatively new anti-inflammatory drug with analgesic and anti-depressant effects. Efficacy of 800 mg orally administered s-adenosylmethionine daily versus placebo for six weeks was investigated in 44 patients with primary fibromyalgia in double-blind settings. Tender point score, isokinetic muscle strength, disease activity, subjective symptoms (visual analog scale), mood parameters and side effects were evaluated. Improvements were seen for clinical disease activity (P = 0.04), pain experienced during the last week (P = 0.002), fatigue (P = 0.02), morning stiffness (P = 0.03) and mood evaluated by Face Scale (P = 0.006) in the actively treated group compared to placebo. The tender point score, isokinetic muscle strength, mood evaluated by Beck Depression Inventory and side effects did not differ in the two treatment groups. S-adenosylmethionine has some beneficial effects on primary fibromyalgia and could be an important option in the treatment hereof."

http://www.ncbi.nlm.nih.gov/pubmed/1925418
http://www.same-priceinfo.com/sam-e_and_fibromyalgia.cfm

vanderk86: "Studies Show Magnesium Might Help Manage the Symptoms of Fibromyalgia
The American College of Rheumatology claims there are between three and six million individuals living with Fibromyalgia, a chronic disorder characterized by widespread musculoskeletal pain.

While the cause of Fibromyalgia is unknown, there are several theories. Some researchers believe that the syndrome may be caused by trauma to the muscles, such as whiplash or a sports injury. Others believe Fibromyalgia is caused when delta-wave sleep, the deepest and most regenerative stage of the sleep cycle, is disrupted.

Recent studies have suggested that an abnormality in the central nervous system is responsible for Fibromyalgia symptoms. Yet, other scientists are considering the possibility of a brain malfunction in the production or metabolism of serotonin, a neurotransmitter involved in sleep and memory function.

Fibromyalgia is not classified as a disease; therefore there are no tests that can reliably confirm its presence. At present, physicians rely on a special technique called "Mapping". This exam focuses on eighteen specific areas of tenderness. The patient must have pain in eleven of these eighteen areas for at least three months.

Studies show that 90-95% of the U.S. population is deficient in magnesium. Most American adults do not obtain the recommended daily allowance of 400-500 mg. Additionally, a large majority of Americans consume a diet of processed and cooked foods, which increases the body's demand for magnesium.

Magnesium is a vital element our body needs in order to function properly. It is a co-factor in activating over 350 biochemical reactions and is required for energy production, bone formation, function and relaxation of muscles, and protein synthesis.

Magnesium is required by the specific enzymes which turn the sugar and fat we eat into Adenosine tri-phosphate (ATP). ATP is the energy source your muscles use for short bursts of power, such as running or throwing a baseball. It is common to find low levels of ATP in Fibromyalgia patients. Researchers believe low ATP levels are connected to Fibromyalgia and that a magnesium deficiency worsens the symptoms."

Http://www.associatedcontent.com/article/85339/the_connection_between_magnesium_and.html

otcclass: vanderk86:
Yes.. those are test cases not real people.. and it is not on the market yet and when it does you know how much that thing is going to cost. Sorry but if there was a TRUE drug that could cure or even help with fibro even a little and was not overly expensive to get then there would not be so many people that have the disease.

vanderk86: "Lack of Vitamin D Linked to Pain - Fibromyalgia News
February 2, 2004

By Salynn Boyles
WebMD Medical News
Reviewed By Brunilda Nazario, MD on Wednesday, December 10, 2003 Dec. 10, 2003 -- There is new evidence that small amounts of unprotected sun exposure could be good for you. Earlier studies have linked vitamin D deficiency with an increased risk for several cancers. Now comes word that it may also be a major cause of unexplained muscle and bone pain. In a study involving 150 children and adults with unexplained muscle and bone pain, almost all were found to be vitamin D deficient; many were severely deficient with extremely low levels of vitamin D in their bodies. Humans tend to get most of their vitamin D from exposure to sunlight, so those who avoid the sun completely or who always wear sunscreen to protect themselves against skin cancers are at risk for vitamin D deficiencies, says Michael Holick, MD. Holick runs the Vitamin D Research Lab at Boston University Medical Center. "I think the current message that all unprotected sun exposure is bad for you is too extreme," he tells WebMD. "The original message was that people should limit their sun exposure, not that they should avoid the sun entirely. I do believe that some unprotected exposure to the sun is important for health." Dermatologists Disagree Holick claims there is now a strong epidemiological case linking vitamin D deficiency with a host of cancers including those of the prostate, colon, and breast; and he says vitamin D may also help protect against heart disease, autoimmune diseases, and even type 1 diabetes. He will present the evidence in a book scheduled for publication next spring, but the nation's largest dermatology group remains unconvinced. In a recent press release, American Academy of Dermatology officials wrote that they were "deeply concerned" that the message that unprotected sun exposure may have health benefits could "mislead the public about the very real danger of sun exposure, the leading cause of skin cancer." Patients Should Be Tested In the latest study, Gregory A. Plotnikoff, MD, of the University of Minnesota Medical School found a much higher incidence of vitamin D deficiency in the patients with unexplained muscle and skeletal pain than expected, regardless of their ages. All of the African Americans, East Africans, Hispanics, and Native Americans who participated in the study were vitamin D deficient, as were all of the patients under the age of 30. The researcher says it was a big surprise that the worst vitamin D deficiencies occurred in young people -- especially women of childbearing age. The findings are reported in the December issue of the journal Mayo Clinic Proceedings. "The message here is that unexplained pain may very well be linked to a vitamin D deficiency," Plotnikoff tells WebMD. "

http://www.prohealth.com/library/showarticle.cfm?id=5324&t=CFIDS_FM

vanderk86: You're too dense. I can't handle the daft. Don't know why I even bother. Do your own research.

PTBO52: Vanderk86: what planet did you come from? Maybe you should be taking Vitamin D to control your hostility. People like you shouldn't be allowed to make the outrages statements unless they have M.D. added to their name.

mayjayran: hey Van-as per your last post -then don't bother-all you r doing is spouting info from net & old stuff too. Since there r no tests "some" Md's-because they don't know try to say it's caused by this that & everything else. BS & man u r full of it. You are the daft one. Stay away from things u have no idea about. Shows how dense u r.

MaryJaneLight: I have fibro. Was diagnosed back in oct 08. I didn't read all the posts, but it's a central nervious system disfunction... not a muscle tissue issue.

It's managable over time, best thing you can do for a friend with fibro is listen to them - you try being in pain and being tired all day, people take for granted their health and people with fibro often feel left out when they can't go out at night... or do all the things they could do before they got sick.

P.s. if anybody wants to talk to me on this issue add me.

hfsquarehead: Well not only was I blessed with crohns I also have fibromyalgia I'm still learning about it. but I have days when I can't even walk to the living room without being in great pain.With the pain from this and the crohns I get depressed alot and have to fight hard to get back to normal(whatever that is)

Diana_the_diplomat: ignorance is bliss butI'm glad I don't suffer from that, I just have fibromyalgia.

Doctors from John Hopkins have been able to show the changes in the chemical composition of the spinal cord which cause the pain receptors to receive misreported levels of pain, functional MRI's from researchers in Sweden can document the difference in the brain between pain perception in a person with mild( as in non life threatening) and non-degenerative damage to the CNS and those without. No its a not in the mind, its in the brain and nerves, yes it is down to a fundemental change in chemistry in the CNS, popping a few vitamins will not hurt as will positive thinking to help cope with the pain and improve overall health but it does not repair the damage caused by trauma and inflamation to the CNS and peripheral system - or people who have had this condition for 20 years or more and tried everything suggested would not still be suffering.

Amytriptyline is good for neuropathic pain.

MaryJaneLight: I take Gaba, and an anti anxiety med called Venafaxine.

Really.. you have to figure out what works for you... I had a bad reaction to Gaba and it caused really bad fatigue.

Fibro seems to effect everybody different... I was told that it is a cascading effect of your nervious system malfuntioning. There are a bunch of other disorders that follow suit with fibro, fatigue, anxiety, depression, pain, rls, irritable bowel..

Avoiding stress and repetitive motion is the best I can do for my fibro.. I've been unable to work full time because of my disorder. I also live in BC, and my doctors, because of my age will not perscribe me pain medication, and so I smoke weed for pain management... which my doctors are aware of.

Life with Fibro, I've learned is challenging.. however Like somebody already said.. it takes a lot of courage, sometimes I feel like I'm fighting a world who refuse to accept me. I look healthy, however there are days when I feel far from it.

I experience fatigue episodes where my body shuts down if I work too hard... and so I've learned to pace myself It's all about knowing yourself.

mayjayran: Agree Maryjane-everyone's symptoms are different. I'm grateful for a great Rheumatologist & Dr. My Dr is aware I smoke pot & is in agreement with me. Works for me. It's been 15 yrs since diagnose & have learned to live with it. Just try to educate people

gfl: I have fibromyalgia and have had it for 20 years- after a year and a half of tests I was diagnosed with CFS and Fibromyalgia. Ten yeas later they found that I have a sleep disorder which could be the cause of the fibromyalgia. It is a grey area disease- It usually follows a trauma- a serious illness-a result of CFS-and is a result of sleep deprivation. The auto-immune connection would be the association to CFS or another serious illness.

It is a painful disease and the best way to deal with it is to do with stretching- exercises and advil.

otcclass: For all those with Fibo... I feel for you and wish you all the best..... If you hurt even just half as much as my husband does with Fibro then I know just getting out of bed in the morning or doing anything can be a real struggle and I salute you for being able to make it though the day and have the will to continue living.
Please do take care.

PTBO52: I should have learned to spell it correctly!

Zanjan: When Doctors say they don't know the cause, have no fix or cure, believe them. The best they can do is diagnose the condition by a simple set of indicators.

Fibromyalgia is not hereditary and is not a disease - it's a symptom of something wrong going on in the physical body. If your doctor has eliminated all other diseases/disorders as triggering factors, that's the time to realize you're on your own so, walk away and do your own research.

Keep it simple - the muscles hurt because they're in spasm, constantly. Having to endure this day after day without let up is very stressful to the patient so don't tell me the result is the cause!

Fibro-fog is not a cognitive disorder - it's the result of continual distraction caused by trying to deal with the pain in combination with drug toxicity. Patients also report extreme sensitivity to strong light and sound - these can be grating because their sensory package is already on maximum overload - they can't take one iota more of stimulation! Additionally, impatience mounts from the "not knowing" and the helplessness to correct it.

The battle to manage this situation is so draining, chronic fatigue is a natural consequence.

It's a viscous cycle of tension.

This thread has been like the kraft guess-recipe book - one wonders if they ever made these putrid dishes; if so, what starving ghoul ate them. The best advice for treatment and care can only come from those who have been afflicted with fibromyalgia - these can share what has worked for them.

Zanjan: What I discovered from having fibromyalgia is that it's a life sentence - BUT it can be managed to some degree, it can flare up despite good management, and it can also go into remission for a time.

For the first five years after my diagnosis, I was a mess - there were days I couldnt even get out of bed. I had to quit work, sleep with my arms propped up on pillows, and I walked with a cane. The pain was agonizing - ounce for ounce, worse than rheumatoid arthritis, and worse also because there wasn't a single thing that offered even 2 minutes respite from the pain, which was everywhere.

I tried everything there is to try, bar none - that's what you do when the pain is bad enough. Finally, there was ONE thing that worked for me - a friend who had rheumatoid arthritis tried it and she'd gone into remission so she recommended it to me. It was safer than anything I'd tried.

The maple syrup-lemon cleansing fast - prep and for the full 14 days, plus the lead out period. Three days into the fast, I noticed a dramatic difference. Half way through, I suddenly felt NORMAL - I had forgotten what normal felt like. By the end of the fast, my fibromyalgia was GONE - NO PAIN, anywhere! I threw away my cane and jumped for joy, although I was holding my breath for awhile. I was in complete remission.

I found that as long as I did the cleansing fast once each year, I'd stay in remission. It's not a cure, but its a big fix - a cheap and short one PLUS nobody made any money off it!!

So, nearly 30 years later, I can say the only thing that triggers a flareup for me is not doing the complete fast, and very sudden weather changes. However, a flareup doesn't last long - only a couple of days and not anywhere near the intensity as those first 5 years.

Food for thought.