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Please tell me you are not subscribing and paying for that fibromyalgia coalition newletter? I'm not trying to offend you by saying this, so please don't take it that way, but from your questions you sound very new to FMS to me. Are you? Generally, when people are first dx'd or have very limited/mild FMS, they ask questions about alternative therapies, etc. as that's usually the first thing people do when they are diagnosed is try to find something/anything that may help and will be sucked into things like the fibro coalition that offer cures or illness reversals which are impossible! Don't get me wrong, I'm not calling you ignorant or bad or anything negative for wanting to find something that will help. I think it's very important to research any illness you have, but you have to be very careful, especially with something like FMS since there are so many people out there misdiagnosed because they have an occasional ache/pain, and soem doctor wants to label them with a disease (when they actually don't have FMS at all), so sure a supplement might cure something they never had!More importantly, there are many, many people out there preying on the people who really do have FMS and are in pain and desperate! Most of these institutes/websites/treatmentcenters, etc, if you really look, have hidden agendas, such as selling supplements, tapes, books, etc., all of which for the most part any way, are useless and a waste of money!
The fibro coalition is a waste of money and a waste of your time and effort reading it! It is full of misinformation and really nothing but hype about reversing FMS, treating root causes, etc. They have multiple sponsers that give them money to advertise on their site as well, all of which are preying upon sick people trying to sell supplements, books, CDs, etc to cure and/or treat FMS.
Supplements do not cure or treat FMS to any significant degree. Sure things like calcium and magnesium help with bone strength and muscle cramping, and obviously vitamins do not hurt you and are good for you. However, again, these do not cure anything other than a vitamin deficiency. If someone truly has FMS, a special blend of vitamins and minerals in an expensive, pretty package is not going to take away the pain, fatigue, etc. or cure FMS. It's just going to empty your wallet! I do take a few specific vitamins (not to cure or treat my FMS but calcium as any woman should probably take this, as well as a multivamin, again as most people with any illness or even healthy people usually take). Also, if I'm getting specific cramping, I may take magnesium as that does help. However, any of these specific vitamins can be bought at Walmart or a drug store seperately for much cheaper, and you can pick and choose what you feel is right for you without being called some kind of fibro cure/treatment, tripling the cost!
As somone who has had incredibly severe FMS for years, I'm just trying to warn someone who is new to this. In the beginning, especially since I had/have it so severe at a very young age (dxd in early 20s and 30 now), I tried everything and wanted so badly to believe all of the false hope and promises by some of these people! I researched everything and would latch onto any little hope these quacks would give me, trying every new mineral, vitamin, and worthless treatment a doctor would recommend. All this did was waste money, time, and effort until I finally realized that these people are just trying to get rich.
I have now just faced the facts that there is no cure/reversal, and I control the symptoms the best I can. I'm not like most of you unfortunately. I do not have flares and periods where there is any type of remission at all. I have constant, severe pain 24/7/365, and also different from most of you is that it is progressing as the years go by. At my relatively young age, I have not known a pain free day in over 10 years, not a single one. I've become a 30 year old stuck in the body of a 90 year old. I have days I'm hardle able to walk and am now about 75% limited in all activities, and this is on chronic opiate therapy of a 50-mcg fentanyl patch, along with anywhere from six to ten 5-mg OxyIR tablets, and a multitude of different muscle relaxants each day. Without the meds I'd be unable to do the limited things I can do and would be climbing the walls/suicidal with the pain.
I hope I did not offend anyone here and apologize for the rambling. It just really upsets me to see someone giving any money, support, or attention in any way to these organizations. companies, etc. like this. that are selling and advertising false hope and sending out misinformation to whoever signs up for it! It's hard enough to get this disease taken seriously as it is without these types of people who are preying on the sick and misinforming the "nonsick" public who are just trying to help themselves or their families/friends to feel better. So, please just be very careful who you deal with and what you waste your money/effort on for your own financial and emotional health. I'd take financial devastation over dashed hope any day. |
Tell me you are not paying for this? - Shannon
