From Our Readers - Comments & Suggestions 10-07-09
October 7, 2009
Is Skin the Major Culprit in FM, Not Muscle?
Re: The award-winning FM-management documentary - “Fibromyalgia: Fitting the Pieces Together”, by Drs. Sharon Ostalecki and Martin Tamler
I just saw the documentary. I enjoyed seeing some of the faces we often read of in the literature. I also applaud the producers for trying to advance understanding of our disabling condition.
However, I am saddened to see so much emphasis on the condition as a muscular disorder. It seems to me to be entirely a neurological condition, likely both of the brain and the periphery. In my view, the skin is the major peripheral culprit. What we perceive to be muscular pain is really skin pain. Any twitches, spasms, etc. are merely a side effect of the noxious stimulus from the overlying skin.
Further, one can have tenderness, soreness over areas where there is clearly no muscle. As long as we hold to the old view of the syndrome as muscular, I fear progress will be slowed. - K
Note: Interesting. See also the recent study of more than 1,400 migraine patients, which found that those who experience allodynia (painful touch) very frequently also have FM, ME/CFS, and or IBS.
On Swine Flu and the Vaccination Decision
Re: “What Should an FM or ME/CFS Patient Do About the Swine Flu?” by Dr. Lapp
• Personally, I'm far more worried about the effects from vaccinations, should they become mandatory, than I am about the flu. After all, I have most of those symptoms most of the time anyway!... Seriously… if these symptoms are so darn bad, then why hasn't anyone in government become concerned about CFS? It could well be considered a pandemic, too, and one that people often do not recover from (unlike the flu, which generally goes away after about a week). Gee, which one really causes more damage and should get more focus? Yes, I am saying this a bit sarcastically, given the political garbage surrounding CFS, and the true reasons that the govt refuses to actually do something real (i.e., physical, not psychological) for PWC's. – A
• What about natural flu fighters? I read with interest the questions and comments on the flu and usefulness of vaccines. I have been ill with CFIDS and fibro, immune system deficiencies since about 1989. I have never gotten a flu shot; vaccines make me really ill. Why is there so little info on this site with respect to keeping the immune system working with the aid of high dose probiotics and good quality homeopathics? I have found several liquid homeopathics that work very well with the immune challenges we seem to have… High dose ester C and good quality echinacea help, too. – C
A: Probiotics – one of our favorite subjects! You’re sure to turn up some articles if you search on “probiotics” in our library (note that search results are ordered by number of times the word is used in the article, not date of publication, so look for those with recent dates). ProHealth carries a wide range of the highest quality probiotic and natural immune-support products. For information on these, search on “probiotics,” or “flu” or “immune” in our store. And if you take the ProHealth catalog you'll be first to learn about our many brand new products.
As for homeopathic products, they are not a specialty of ours, perhaps because effects of these products are said to vary greatly, depending on the homeopathic prescriber’s evaluation of the selection, dilution, etc. that may work for the individual.
Vitamin D and Eczema
My daughter has had eczema since she was 5. She is now 19 and is free of it by taking vitamin D3. It has been a long road; glad it is over (I hope). She was taking 1000 IU D3 in the morning and 1000 in the PM. – L
Wondering About Colostrum
Q: I have been advised to try Colostrum by a girl who has CFIDS/FIBRO that I just met. She said it has made a world of difference in her being able to function. I would like to know what you have heard about this. - A
A: Colostrum (also called "transfer factor") is the lifetime immune database that human and animal mothers pass on to their offspring through mother’s clear ‘first milk’ or in the egg. It can be passed from one species to another, so colostrum and the immune database from a cow or a chicken can be shared with a person via supplements. For much more on this truly amazing process, see “Transfer Factor, Supporting a Healthy Immune System.” Or search on “transfer factor” or “colostrum” in our store.
Sharing Info on Savella™ (Generic Name Milnacipran)
Q: Have you mentioned Savella for Fibromyalgia? It works as an antidepressant although it is not one, so one must work with a psychologist as well as a Pain Doctor or Rheumatologist. It is the third approved drug for fibromyalgia along with Cymbalta and Lyrica. I tried it and unfortunately had many of the side effects mentioned in the product information, including rapid heart beat, headaches and nightmares, so I had to discontinue it. My doc says it either relieves a lot of pain and gives you a lot of energy, or you will have side effects and have to quit. The first few days I was on Savella I did have no pain and more energy, and then the side effects became too much. Your readers should know about it. - C
A: Thank you very much for helpfully sharing your experience! We did highlight Savella when it won FDA approval and when it appeared in pharmacies. Other FM patients who may be considering Savella (milnacipran) may want to search on it in ProHealth’s FM Message Board, where you’ll find both positive and negative reports.
Natural Help for Acid Reflux?
Q: Are there any natural ways to help acid reflux? My husband was just diagnosed with it after several months of stress at work, and he hates to take the acid-blocker drugs if he can avoid it.
A: A Google search indicates there are lots of options he could experiment with, since each reportedly seems to work well for some people and not others. It may be that finding a way to deal with stress and avoiding bad foods (especially fried & white flour/sugar products) is harder than finding helpful foods.
A few of the suggestions we found most often are:
• Lots of water – probably good for everyone; keeps acid diluted.
• Milk – after every meal if possible. Some swear by skim, some by whole milk.
• A handful of almonds daily - recommended by nearly everyone.
• An apple after meals - also recommended by nearly everyone.
• Apple cider vinegar – oddly enough this helps reduce acid. A few tablespoons may help when acid attacks, and drinking it daily in water could keep things under control.
• Ginger - candied, in tea, raw, or supplement.
• Deglycyrrhizinated licorice (found in supplements, not candy). It has powerful anti-inflammatory properties and creates a protective coating on the intestinal lining and esophagus.
Less well known but potentially very helpful:
• Chia seeds
• Daily raw cabbage juice – researchers apparently established the benefits of this more than 50 years ago
• Some even say eating a little mustard helps
Medical Tests & Tools Explained
This is a safe site to find good info to explain that medical test your doctor says you may have to take. It may be of use to some: “Medical Tests A to Z” - T
More Suggestions for Charley Horse & Other Leg Spasms
Re: The letter asking about natural products for charley horse.
• Mustard that contains turmeric (curcumin). I frequently get leg spasms if I get too cold while sleeping. They can be in the calf or more commonly along the sides of the lower legs. My mother and aunt have the same problem (all three of us have fibromyalgia). I do find that in the summer they are more frequent and I need to increase my magnesium for a few weeks, but the rest of the year the simple solution is to eat a spoonful of prepared mustard (make sure it includes turmeric) at bedtime and again if woken by a cramp. It usually works in minutes; sometimes if the cramp is severe I also put heat on the affected area. - S
• Malic acid! This has been covered to death but again: MALIC ACID. Calcium, Magnesium balance, some say 1 to 1, others differ. But the old an-apple-a-day is correct. Best source of mallic acid. I get malic acid powder from a beer/wine makers’ supply store as I cannot afford the supplement stores. How much - everyone is different. Mix it in H2O or juice. Start low, till you find what works. When I am out, these attacks have been enough to take me down. Literally brings me to my knees. Brings tears to my eyes. - T
Common-Sense Article on Fibromyalgia Fatigue!
Re: “Fatigue plus Pain – Fibromyalgia’s Double Whammy and What to Do About It,” by Dr. Mark Pellegrino
Thank you for this article and for acknowledging that late afternoon early evening can be such a bad time for anyone with Fibromyalgia. I have printed this article out and will take it with me when we go away to stay with family at Christmas time. This is my worst time of the day and I have been dreading on how to explain to family that I will 'crash' at this time of the day, now I can show them written proof on why I do. Also the section on 'visual overload' had eased my anxiety on why my eyesight seems to go funny at times.
At last an article that allays fears and talks common sense. It's time professional people just eased our lives and the pain we go through instead of trying to 'cure' us, when we all know there is no 'known' cure for Fibromyalgia. – M
Strontium for Bones - Long Overlooked
Re: “Strontium - The Missing Mineral for Strong Bones” by Dr. Dana Myatt, NMD
I'm so glad y'all posted this, it should be on the ME/CFS/FM Message Board as well. I read about it about 10 years ago; it's amazing how long it takes to get information around, even with the awesome speed of internet! – V
Iyengar Yoga Helpful for Low Back Pain
Re: “Special [Iyengar] Yoga helps low back pain more than standard medical treatment”
• Yoga saved me. After years of 'Western' medicine and physical therapy, Yoga therapy saved me. I'm 56 years old, have multiple health issues, and doctors told me I'd be on pain medicine for the rest of my life. NOT! Yoga therapy (private and group sessions) with a physical therapist, some diet change (more organic), and prayer saved me. My therapist has written many yoga therapy manuals and she educates medical professionals. Unfortunately (for many of us), most physical therapists are not trained in these therapy methods.
If you're a medical professional, please check out www.ProYogaTherapy.com. For others, enter that site then click on "Find a Professional Yoga Therapist" at the top right. If no instructors trained by PYTS are near you, www.YogaFinder.com might help find a yoga class. Since you're reading this ProHealth page, I'd recommend starting with a Restorative Yoga class. I did that for 3 years prior to advancing to Yoga I. Wishing you well! - P
• I use a video. Because I am basically homebound, I purchased a 'yoga sculpt' video to practice at home. I've been hooked ever since. I totally agree with the study ,and it helped to ease some pain for me. In fact, often when I became too fatigued to do anything, I'll force myself to yoga for at least 10 minute... my muscle craves it. The video works for me, 'cuz I can do it at my own pace. - J
Pain Patients Treated Like Addicts
Re: “FDA Approves Morphine-Naltrexone Combination Extended Action Pain Drug”
• Explanation needed. I am a Chronic Pain patient and have been for approx. 40 yrs. First, I want to address the issue of the "booby trap." When I first rec'd a prescription for MS Contin, no one bothered to tell me that it should not be broken in half, or crushed; or what the consequences of just such an action could be. According to what I have read on the subject of Pain and Medications for Pain, the pharmaceutical companies already include some kind of "blocking agent" in these types of drugs so that the so called "euphoric effect" is not experienced by the patient. This "euphoric effect" is so hammered into medical students that it has taken on a hysteria usually meant for the drug addicted street individuals. That becomes the goal, rather than keeping the patient out of a prison of pain. People are left to suffer, no compassion, no empathy, no intelligence or wisdom touch their jagged edged squalor…. - M
• Pain pill phobia. Why are the millions of Americans suffering from chronic pain made to feel like and treated like drug addicts? Because of the abuse of a few, we who are truly in pain must endure it because the powers that be don't want us to get "addicted."
I can barely walk due to severe osteoarthritis in my left knee. What am I prescribed? Advil. The Hippocratic Oath says "First, do no harm." Aren't you doctors causing harm by allowing those of us with chronic pain to suffer the way we do? What productivity you'd see if we only weren't in agonizing pain! - A
Note: This information has not been evaluated by the FDA. It is generic and anecdotal, and is not meant to prevent, diagnose, treat or cure any condition, illness, or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.
| (1 existing comment)
fibromyalgia as a neurological disorder
|Posted by: pearls
Oct 7, 2009
I agree that fibromyaliga has a neurological basis, even when we suffer many and varied symptoms, such as muscle pain and "fibro-fog." Since early 2001, I've been battling fibromyalgia, and have tried a number of legal and powerful drugs to find a combination that would help me. Some did. But nothing helped like Lyrica did right from the start. Lyrica was originally approved for seizures, which are definitely neurological in nature. As to pain, it comes in many forms: stabbing, crushing, throbbing, dull, burning and itching come to mind. With fibromyalgia, any of these can be a part of our experience. I've had burning skin and eyes. I've experienced crushing chest pain caused by knotted muscles in my back. My legs often feel cold to me, but not to the touch of others. Then there are other symptoms like "fibro-fog," or unclear thinking. Another problem I've had is thick, post-nasal drip. Also, when I'm in a room with a fan, I often have to either plug my right ear or wear a headscarf because of some small, but irritating ear pain. A muscular-centric view of the nature of fibromyalgia does not explain all of this. The neurological explanation is more acceptable to me.
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