im researching for my mom, shes tried several different meds and has had no relief so she lives on pain pills. we just found out that it was an autoimmune disease, so wouldnt she need to be put on an immune suppresent drug??? what is the immune system attacking anyways??? we dont know much about it so any info would help.. I'm sorry to hear about your mom, its not an easy thing to get any diagnosis of an illness. Its got to be hard on you as well.
There's several avenues your mom could take.
I would suggest you both look into the Guaifenesin Protocol by Dr. St. Amand, he has been successfully treating FMS specifically (including himself) for MANY years. I have 2 friends on it now who are doing remarkably well, I am also going to be starting it myself, it does take a bit of preparation so start looking into it now. They have a great book & website: http://www.fibromyalgiatreatment.com . I've had chronic FMS for 20 years & a couple other autoimmune diseases... BTW Dr. St. Amand believes its not an auto-immune disease, he believes it's hereditary, other people say it IS an auto-immune disease, I don't even know what to claim it as anymore, it doesn't really matter in the end, it's an awful illness either way. I have tried many different medications, treatments & protocols, some help a little, some not so much.
I also highly suggest avoiding steroids such as Prednisone like the plague. That is some NASTY AWFUL POISON, no matter what anyone claims, it鈥檚 BAD (I don鈥檛 know one person who鈥檚 ever benefited from it, but I do know a TON of people who were put on it for FMS & many other illnesses & every single one, including myself, has gotten sicker or had a really bad reaction to it! If she's already on it, she can & should wean off of it (while monitored by her doctor) Here's a good site that explains how it should be done: http://mpkb.mp-dev.com/doku.php/home:oth... & http://www.marshallprotocol.com/forum2/1... Both of these pages are from the Marshall Protocol website. I was on this protocol for a year, it helped me quite a bit with my FMS, but it's not popular & its very difficult to follow. She might consider this protocol, many with FMS do, but this protocol works specifically for Sarcoidoses & has only benefited people with FMS, that is why the Guif' protocol is appealing to me because it is for FMS & nothing else. But the MP website has brilliant information on many different health issues & has a great forum with helpful people if you have questions.
Another good place to read info about FMS is: http://www.fmnetnews.com they're very informative & discuss different treatments & other options.
Lyrica has helped some with FMS, but it didn't help me at all, but she may want to check into this as well.
Another thing (while you're weeding through treatment options) is to check into the many support groups for autoimmune diseases or specifically for Fibromyalgia sufferers. Yahoo Groups has several good ones itself, http://www.fibrohugs.org is also a popular support group.
The best part for you is that you got a diagnosis & are looking for treatments or answers, many people go years without a diagnosis or ever for that matter & many times we're misdiagnosed because the symptoms are very similar to Lupus, Lyme Disease, Multiple Sclerosis, Rheumatoid Arthritis & a few others, plus we can have more then FMS too. But if you start researching early enough, there is a way of controlling FMS (or as Dr. St. Amand says can even reverse the effects of it). So don't get discouraged, there's lots of help & support & options you both can take.
Don't get overwhelmed with the hordes of info on the net about FMS & don't listen to anyone who tells you that they know the cure or the only thing that helps, one thing about FMS is it is a very individual disease that attacks us each uniquely, we could also have different levels of it as well & we all respond to treatments/med's differently then others do, but in my opinion I think the Guaifenesin Protocol is the closest to the best treatment out there.
Take care of your mom & also yourself, if it IS hereditary, that means YOU have FMS too & probably do not experience the symptoms as your mother does... yet... but if you stop it now you may avoid any symptoms yourself.
Gentle hugs from a fellow FMS sufferer. it is NOT autoimmune--at least there is no evidence of it
there is IMMUNE DYSFUNCTION
in FMS--the Immune system is under or over reactive to forein bodues
Autoimmune means that the body attacks its own natural cells...
REAL FMS is a neuro disorder--there is evidence of a problem with blood profusion to teh brain and with the way the brain uses neurotransmitters (serotonin, norepinephrin)
the 3 approved meds are teh SNRIs (antidepressants) taht work on the neurotransmitters
and the antiseizure med Lyrica
there has been more hype tahn hope--but some people seem to have been helped
FMS is highly overdiagnose--be sure she really has it--many docs use it as a genral term for pain and fatigue----and are clueless--liek teh person who claims it is autoimmune (doc or website)
autoimmunity can't be ruled out 100%--but there is absolutely no indication it is.
*****************************also--the... is no inflammtion--so NSAIDS don't work much************************************
narcotics target the body--buit the problem is with the brain....
diet and exercise don't so much help FMS--but help optimize tehbody so it can better deal with it It is related to IBS (irritable bowel syndrome) which has a genetic link. It is also related to RLS (restless leg syndrome) which can be related to anemia and low iron. I read something about one of the sugar substitutes is considered to be a nerve toxin and might be related to some cases of lupus, fibromyalgia and multiple sclerosis.
http://www.joyfulaging.com/SugarSubstitu...
She could also try the "anti-inflammatory diet" for reducing pain...low protein, low fat and low sugar...no potatoes, tomatoes, peppers (from the nightshade family of plants, etc.) It is meant to reduce chemicals that cause inflammation and pain in the body. You can google that phrase and find out more specifics on it. I have had fibromyalgia since 1994. Pain pills do not work for me. At best, they make me sleep and I wake up feeling hung-over and worse. I take fish oil pills as anti-inflammatories. I take lots of vitamins. Acupuncture is the one thing that has helped the most. Swimming is good too.
She should not be using immune suppressant drugs. That is a last resort and she could die from a minor infection using drugs that strong. She has to find ways to calm her immune system and get it working more in balance again.
Bio identical hormone treatment can be very helpful
Turmeric, ginger, CQ10, B-vitamins, C, D (1000 units, important!), magnesium citrate. Drink plenty of water. Take fiber, like ground flaxseeds and probiotics.
Here is an article about conventional and alternative treatments: http://www.lef.org/protocols/immune_conn...
& about lots of studies:
http://www.lef.org/protocols/abstracts/a...
There are more studies on LEF site if you search it. You don't need to buy supplements there, it is expensive. Try
Lucky Vitamen, iHerb or VitaCost for vitamins.
I have gotten better. Make sure she know that can happen.
You can't lose hope. I take melatonin to sleep every night, 9 mcgs. It helps. I no longer have numbness, "fallen asleep" or pins and needles sensations in my arms and legs.
If she has intestine or headache problems, email me and maybe I can give some help on that. Good luck. This condition takes time to get better. But it can get better. Just taking a walk for 45 minutes a day can help a lot.
***MSM can be very helpful too. You start by taking a small amount, like 500 mgs per day with vitamin C. You slowly work up to 10,000 mgs per day over a few months. It can be very helpful.
You have to go slowly or it will give you headaches and diarrhea. This is something I tried years ago and it was talked about by a number of fibro sufferers on a discussion group. My friend with Lupus ( a terrible auto-immune disease) said MSM helped her more than anything ever had.
I am not sure that fibromyalgia is an auto-immune disease. My mother had Rheumatoid Arthritis which is auto-immune. There is a blood test called a "sed rate" that will indicate auto-immune disease, and I have read that is not a probem for fibro people.
I think no one knows enough about fibromyalgia.
It's a hard one. I had been in a car accident in 1994 and then got worse and worse. I had never heard of fibro. My PT thought I had it. I mentioned it to my doctor and he was furious. "There's no such thing!". He's singing a different tune now. God, how I wish there were no such thing! Welcome to OUR WORLD...it's a real 'pain' being here, but we're here to help.
If your Mom was recently diagnosed, may I suggest she see a Rheumatologist to rule out some other diseases such as Rheumatiod Arthritis, Osteoarthritis...most of us have at least one of those as well, and they have some dandy new meds for the pain. You may contact me via my email addy if you wish and I can put you in contact with some wonderful people who can help you and your Mom with this disease...it's not deadly, but it's no fun either! Never be afraid to ask a question! Diagnosed with Fibromyalgia six months ago. I take Lyrica among others for sleep. Very little pain. Find a support group. Ask lots of questions. Lots of good, informative books available. Bought mine through Amazon. Good luck. |
