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Letters From Readers With FM Wellness Insights and Suggestions 10-11-06

  [ 258 votes ]   [ Discuss This Article ] • October 9, 2006

Sun, Vitamin D & Pain Connection
The letter [from Laurel in the September 27 FM newsletter on “Vitamin D Deficiency and Fibro”] caught my eye and curiosity. I have had Fibromyalgia for over 20 years now, and only this past couple of years have I actually found that there were times I felt better than other times that wasn't associated with the intake of food or my depression. We moved to a warmer climate and I am in the sun more now. During the winter months my pain increases at least 10 times worse. During the summer I am in the garden, as that is where I am at peace with myself, and it would seem that due to the amount of sun I get, I am feeling much better in the summer. During the fall I begin to have more pain, and by winter I am needing all kinds of pain killers or anti-inflammatories. I will discuss taking vitamin D with my doctor and make sure I don't overdo it. I hope that I have figured out what may be my trigger for pain. Moving to this warmer climate produced more sunshine and better feelings, so vitamin D could very well be what Fibromyalgia patients need. I'll let you know how I am doing as time goes by this winter. - Dolly

Supplement “Boosts” Can Taper Off
Just a spot of feedback on what I've just read in your newsletter on evening primrose oil [] In my experience - and I have been taking EPO for about 18 months now - it has an initial boosting effect which gradually tapers off. Nobody mentions that this could happen, and I think people should be aware of it. It’s disappointing if you are not expecting it. I noticed a vast improvement for about the first 6 months, then it slowly tapered off. All these supplements can have this effect. I recently exchanged information with a fellow CFS sufferer who explained it thus: Each time you try something else, you give your body a boost to a higher level. Then it tapers off - gradually loses effectiveness. So then you boost up with the next thing. My friend is back to being energetic and active in the community now, although he has to pace himself. My situation relates to this well, so I guess some others might feel the same. - Jan

Just Keep Moving On
I was diagnosed with FMS about 15 years ago. For about the first 2 years I sat having my very own pity party, because I couldn't even hold my grandkids. I saw many Doctors about this. Most tell you in so many words, "just get over it". [Then] my GP directed me to a doctor who deals only in FMS. He had me try several meds, which worked for a while. But finally I accepted that this is just part of my life, and I must move on. I exercise at least three times a week at [a national women’s workout franchise]. I volunteer at a local coffee shop. I find that if I stay busy and exercise regularly I feel much better, mentally and physically. It is mind over matter I guess. If I quit exercising I feel worse, so I try to keep moving and keep my muscles working. I try to keep a good mental attitude. We cannot feel sorry for ourselves. This is not terminal! Thanks for letting me share. - Yvonne

Different People, Different Results
Following are two representative responses to Gloria’s letter “I Can Smile Again,” featured in the September 27 Weekly Inspiration:
n Gloria, you took a pro active approach to the Syndrome. My story is similar - too many doctors and too many pills. The more I studied Fibro, the more I knew I had to get off the medication. Water aerobics, yoga, and a chiropractor. I too can smile again. Love to hear the amen stories. - Sonja
n I am happy for Gloria. But I have tried chiropractic treatment, vitamins, and many other things ad nauseam. The only thing that helps is opioids and some other medicines. I won't give up though. - Lois

Cold Laser Light
It has been a year and a half since my chiropractor started using [cold laser lights] on me. I had been on OxyContinTM [narcotic pain reliever] for almost 10 years, and now I am completely off of it. My pain levels are the lowest they have been since I was in high school, and now I am 62. I think more research needs to be done with this and energy medicine. I would like to see more articles and research in both these areas… they work. My doctor had me on so much medication, it almost killed me… People can get off the medication and use these methods and be without pain. - Pat

Note: See the article “One Fibromyalgia Patient Seeking Pain Relief is Beginning to ‘See the Light’” in our archive at It explains that, cold laser therapy is “low-level light therapy [that] directs light energy at tissue to help it heal.” The FDA has approved it for treatment of carpal tunnel syndrome, and “chiropractors are increasingly using it to treat back and neck pain, shoulder and knee injuries and other joint pain.”
Trying Mirapex™
Thank you for the information in your September 13 FM newsletter regarding the Fibromyalgia trial of the drug Mirapex™ used for Parkinson’s [“Critical New Piece of Fibromyalgia Found?”] I visited my Doctor yesterday, explained to him that not only is the pain with FMS driving me crazy, but I also... have absolutely no recollection about some incidents (not just forgetting), and took him your article to read. He was impressed and agreed to prescribe one of the drugs. - Brenda

Rich Carson replies: Make sure you keep your eyes open for possible negative side effects, and you would be well served to ask other FMS patients about their experiences, on ProHealth’s bulletin board. Good luck!

MirapexTM Pros and Cons
I have taken MirapexTM and it has helped reduce [terrible sweating attacks] - have not noticed any other change. It does make me sleepy though and that is not good - and I had to stop taking it after a month as it also nauseated me. Are there any other meds out there that will keep the dopamine levels up where they should be? Thanks again for an interesting article. - Barb

Many May Have Lyme Disease
Because I'm [a physician] treating a lot of Lyme patients, I run across a large proportion of people who have FM symptoms and are also positive for Lyme. That is, obviously, only one of the many possible causes, but should absolutely be checked out. And remember: A negative ELISA* means nothing. Get comprehensive testing done according to the latest techniques. – Jean

*Note: The Enzyme-Linked ImmunoSorbent Assay (ELISA) is a test used to detect an antibody or antigen in a sample. At least two studies of ELISA testing for Lyme in the U.S. indicated the results were accurate about half the time, according to report at the Canadian Lyme Disease Foundation site

We Can Feel Better Faster, Post-Op
[About “Guidance for FM Patients Who are Having Elective Surgery,” from the September 27 FM newsletter] What a helpful piece of information for those people who are not familiar with how our body works - and how to help your doctor understand our case and our bodies’ needs. Thanks so much! As a nurse, and also a Fibromyalgia patient, I am familiar with these ideas. However, I have one concern: What the doctors think when we as patients hand this guidance to them? I am wondering just what they might tell us to do with this piece of paper. And it is sad, because this could help so many of us feel so much better right away in the post-op! – Marilyn

The Marshall Protocol
Just writing to ask if anyone has had experience with using The Marshall Protocol for autoimmune conditions. I have only read about it on the Internet. If anyone has an opinion pro or con, please would you share it? - Julie

Rich Carson replies: Many patients have tried it, and you will be able to get information and support on ProHealth's bulletin board. Good luck!

Doctors Who Do Understand - So Precious
I was diagnosed with Fibromyalgia in 1992 after my internist ruled out rheumatoid arthritis and lupus and referred me to an arthritis specialist. He was on the mark, but my career ended 10 years before I ever dreamed it would due to the fatigue and sleepless nights, as well as extensive pain and depression... A neurologist asked me the specialty of the physician who diagnosed me, and his response to my answer confirmed my puzzlement at hearing person after person say they too had FM: Fibromyalgia has become a dumping ground explanation for many general practitioners who do not understand the source of pain and say to a patient they might have Fibromyalgia. Therefore, it seems Fibromyalgia illnesses are prevalent in the world I live in, but few of these people understand the symptoms of my illness or the circumstances of my lifestyle… I long ago gave up making an effort to explain the excruciating pain… I am thankful for my team of physicians - an internist, psychiatrist, neurologist, ENT, and gastrointestinal specialist who take my condition seriously and have learned to "know" each other and the roles of each as they work together to help me seek a better quality of life. They know I will not give up. It is my hope that everyone who fights these unseen and misunderstood conditions will find physicians who have understanding of the conditions and offer support to their patients, and knowledgeably and compassionately treat them through some of the most difficult times when life seems not worth living. It is. And our quality of life can be as good as we can make it when we seek diligently for the knowledge to improve the conditions of our lives. - Belva

In Australia, Helped by “VibroGym”
I am 35 years old and have been an FM survivor for the last four years, which I was told was the result of a virus. At my lowest point I was given a wheelchair, and various aids around the house to help me to get around and to take care of myself. After taking guaifenesin I became a lot better quite quickly. But I have to say it wasn’t the cure. I then found a VibroGym [a platform marketed in Australia that generates vibrations which are transferred to the body, for use by physiotherapists for the disabled and rehabilitation, and by trainers]. I started with very light massage; then on to some light training. I am now free of all medications which my doctors had prescribed for me - antidepressants and opiate-based painkillers. I’ve also shed 32 pounds without dieting. I still have good days and bad, but my bad days are a lot less, and when I do get them I can still function. I can’t remember the last time I had to take painkillers. I really feel that meeting the lovely lady who treats me has saved my life. - Heidy

Western Cedar Pollen Causes Much Illness
…At one point I remained symptom free for several years. I found out later that this was most likely due to us taking out the five western cedars in our front yard. We moved to an apartment… [and] my myriad of symptoms started acting up again. I discovered along the way that, in addition to mold, I am very allergic to western cedar pollen. In each location where I experienced [leg cramps, edema, sheet pain, lung issues, fatigue and depression/anxiety], there had been huge cedar trees right outside our bedroom window. I would start getting sick around late February/March and it would continue. Cedar pollen season is February through June. Western cedar causes a tremendous amount of illness in people. It's considered the [worst] of all pollen producing plants - should probably be labeled a bio-hazard. In Texas and New Mexico, there is a stiff penalty for even planting the tree, it's that serious. In Tokyo, where they've had a reforestation project with cedars, millions are falling ill and people wear masks and protective clothing when they go out.

What I'm learning from all of this is that much of our symptoms and diagnoses can be the direct result of allergic responses to our home environment, and doctors really are not trained to see your symptoms as being home environment related. I still live in the Pacific Northwest and currently live in a very pollen-heavy, high mold area, but as long as I keep the windows closed, the floors vacuumed/mopped every other day, swipe the cats when they come inside (to wipe off any pollen/mold spores) AND keep the humidity levels of the house between 40 percent and 50 percent, I remain symptom free…

This is not to say any of the above is a panacea. It's just that it's amazing how many symptoms can be addressed by simply finding out if there is an environmental trigger, and taking care of it. It is also critical, I believe, to everyone's health, to keep your living environment in the safe zone of 40 percent to 50 percent humidity. We've found that over 60 percent invites spores to activate and dust mite populations to explode, causing some of the above symptoms. Too low (under 35 percent) and it dries out any spores in your house, which go floating into the air. I also can't recommend Qi Gong enough. It is a simple set of exercises that almost everyone can do without effort. If the above helps even a few people experience relief of some/all of their symptoms, I'll be thrilled. - Yarrow

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