Fibromyalgia

[ltreece]

I am 43 yr old female diagnosed with fm 9 yrs ago. I was prescribed lg doses of pamelor as treatment. Prior to starting this med i was thin but within a yr of taking this med i gained 80lbs and continued to gain. I haven't been able to lose the wt no matter what i try. I became very frustrated with the doctors -- they made me feel like i was crazy & lazy. I was a very active person before and always was a very hard worker. I stopped going to the doctors and and tossed the pamelor and since then i have just been suffering. I am a RN which is frustrating at times because i feel like i'm much sicker than most of those i care for but nobody seems to care or understand - so i keep quiet about it. I've tried diet changes, herbal remedies, chiropractic, the most relief i ever found was IV chelation therapy thru an alternative doctor last year - i lost some wt, pain reduced some, some increased energy but it cost me $100 per session (weekly) plus the alternative meds and i cannot afford this -insurance doesn't cover it. I read something online about guaifensin protocol - has anyone out there tried this or know anything about it? How does it work? I am getting desperate for help -- lately i've been thinking i can't possibly continue to live like this - fm has completely changed my life. It controls me physically, mentally, and emotionally -- it's like being imprisoned!!! Someone please respond.

[tlund]

Hi ltreece,

As you wait for responses to your post in this forum, you may also want to check out the "Living with Fibromyalgia" section of this website. Many browsers have posted information on their experiences dealing with fibromyalgia, which can be found here: http://livingwith.neurologychannel.com/fibromyalgia/.

Best wishes to you.

[LLP]

I am 55 yrs old and have been dealing with the symptoms of FMS for 8-10 years. I quit nursing (I too am an RN) in 94 because, in addition to being burned out, I was having a lot of pain in my neck and back. I started a plant nursery business, and after about 5-6 years realized that something was really wrong with me physically, and ultimately had to quit my business. After doing some internet research in the late 90's I realized that I had FMS. I was then officially diagnosed in 2001. I am now unable to work at all. I too have done all kinds of treatments including drugs, herbs, accupuncute, chiropractic, nutrition, etc. and although some of these therapies helped for a while, none lasted for long. I have been on Ultram for pain since 2001 and it is the only thing that helps because it attaches itself to the seratonin receptors making the pain ease up. I only take what I need to ease the pain enough to get through the day.

That said, the treatment that helped me the most was Gerson Therapy which is a combination of diet, fresh vegetable juices, supplements, and coffee enemas (www.gerson.org). It is a therapy designed for cancer treatment, but is often used for any kind of chronic illness. I went to the clinic in Baja and within a few days, my migraines were gone and many of the symptoms that were plaguing me diminished. Over that first year I lost 50 lbs and was not even trying. It is a very challenging therapy and for someone with a chronic illness, it is hard. But if you can stick with it, it can make a huge difference in how you feel. I am more relaxed with the diet now, but still do a morning enema (with a special organic, unroasted coffee out of Canada) which help unload the toxins that build up overnight. It doesn't fix what is wrong, but it really helps the body cope with the struggle. Although I can't work, I am able to do things that I would not otherwise be able to do.

I also recently read about 5HTP helping sort of re-boot the pituitary gland, which is one of the primary glands that fail in someone with chronic fatigue or FMS. I have not tried it yet, but have some on order. I never quit looking, reading, studying. Some day there will be some answers. And every person I have ever talked to who has this frustrating syndrome, responds to different things. All we can do is have faith that the relatively recent recognition of this condition will spark enough interest by the scientific community that we will finally get some solid answers.

I know your pain and frustration. Just don't give up the search. .....LLP

P.S. I am suspecting that most women who get this syndrome are the kind that burn their candles at both ends. I too was a physically active, strong, energetic person when this hit me. That is why it is so devastating. It feels like your body has betrayed you. When your personality is based on who you used to be, it is difficult to redefine who you are now. Be gentle with yourself and let your new experiences be a guide to learning who you are now. Resistance really is futile, and only creates stress that will flair your symptoms.

[ltreece]

Thank you for the information - i will look into the info you gave me.

[peaceon]

I've had Fibromyalgia for over 25 yrs after many years of sleep deprivation from IC. All these years later exploring deep into nutrition and celluar health has been the most helpful along with yoga and walking. Somedays DEATH would be a welcome relief -I UNDERSTAND. I have been devastated physically, financially, socially, emotionally! Peacon (and yes alternative treatment makes ahelluva alot of sense health wise and is more cost effective than western medicine and not dangerous to our health) Insurance does not always mean 'health care.
"You Are Stronger Than YOU Know" (mother theresa said this)

[yolanda]

Hello--

I am not familiar with the Guaifenesin Treatment. I was diagnosed with fm about two years ago now so I relate to your feeling like being a prisoner in your own body. I just discovered a website called www.myalgia.com. The site specializes in fm and is run by a teaching hospital-OHSU. I recently changed my insurance so that I can go to there. I'll let you know what I find out but in the meantime you might check out the website. It could be helpful!

wishing you a painfree day.....

[myhope]

try jesus

[deserttiger]

I certainly empathize with you and the other RNs suffering from this painful disease while caring for others. I had to give up nursing because I could not handle the pain and fatigue caused by fm and exacerbated by the physical activity involved in caring for patients. I have not tried the Guaifenesin treatment, but by accident, I have found a herbal remedy that has worked wonders for me. It is called vinpocetine. It is a derivative of the periwinkle flower. Look it up on wikipedia and see if you think it may be appropriate for you. I started taking it for memory enhancement. I doubled the recommended dosage and within about 6 weeks I noticed that I was no longer taking Excedrine every few hours and after about 3 months I seldom need any pain relievers at all. The only side effect I have noticed is that my blood pressure has been lowered. The other thing I did that seemed to be helpful was to have some acupuncture treatments for deep mental relaxation. I am now actually sleeping up to 6 hours at a time now and I am able to do some exercising which does help. Its wonderful for me. I hope it will help some of you as well.

[prairiechick]

Guaifensin is marketed as MUSINEX in 600 mg tablets. You can purchase it online in 100 tablet bottles, much less expensively than you can get them in the local drugstores in the 20 tablet bottles. Yes it can help but it will not cure you. There are so many different factors that contribute to fibro that you will spend the rest of your life trying to find relief as you go through periods where you will feel better for months then a flare-up will send you spirialing down to the bottom again. Since we have no idea what causes the problem we can't find the cure.

What seems to work for certain people doesn't work for others. I'm back on Musinex because I also have Asthma and allergies with my fibro and it really helps me breath. My doctor also has me on 400 mg of CO-Q-10 a day and that has made the biggest difference in my life. Before that I couldn't walk to the mailbox without collapsing from fatigue and lack of of oxygen. Now I have no problem with walking or breathing. It also cured my high blood pressure. Previous doctors didn't believe me when I kept complaining of chronic fatique and how badly I was affected.

I'm allergic to prescription pain meds so I can't use them. I've found herbal PYCNOGENOL 60mg, two or three times a day helps control my pain. You'll have to find it online, I haven't been able to get it locally. It really helps me with inflamation and soothes the pain within 20 minutes. I don't know why it helps, but since it's made from pine bark, I assume like aspirin which is made from willow tree bark, there might be some type of link. Nature really does provide a lot to heal us if we're able to utilize it.

I personally believe, as does my doctor, that fibro is a virus. Most of my symptoms cycle just like the flu. Chills, headache, pain, cramping. Since there are over 2000 viruses it cannot and most likely will never be isolated. I think that our rapid increase in stress levels has triggered this specific virus to proliferate. It seems to hit highly motivated, athletic, intelligent, people. Another common factor appears to be that many have had some type of back ,neck or head injury prior to the onset of their fibro symptoms.

Believe in yourself, don't let anyone convince you that you aren't sick, and keep fighting for your right to find the best course of treatment for your illness. I'm on disabilty because of this illness, and even though I'm in pain each day, depressed by the things I can no longer do, financially ruined, the government still thinks I was capable of working a full time job. I can't even manage 2 hours a day. I don't know how you are doing yours. You are one strong determined person. Good luck.

[cutecat]

Sorry to mail late. i Am 47 years old, RN, BSN. I have been suffering pain for years but finally is diagnosed Fibromyalgia, beside herniated disk that pinched both sciated nervers that make my whole body constantly pain, painful whenever I move. With all the problems that makes me so weak and now i am only able to work partime. I am type A persionality, a mother of two teenagers and also take care of my husband who has heart attack and I am the only one support for the whole family. Therefore i really understand how hard you gone through.
Most of the meds given by drs make me sick. I think you can try to take a walk every day, whenever the pain so intense, try to have spa; hot water helps to sooth your pain by relaxing muscles.
Try to avoid dairy products, meat, fish, food containing chemical. Meditaion or yoga also help you to reduce stress. i also take Ammitriptilin every night to relieve pain and also help me to slepp. Take care