Hot Topics & Readers' Notes - 12-21-11
December 20, 2011
Sneak Peek Fibromyalgia Documentary
If you want to educate someone who doesn't understand how serious FM can be, this YouTube video (Sneak Peek Fibromyalgia Documentary) presents moving fibro patient descriptions of how FM affects their lives – directed by Modie Chehouri (Modie2005).
Need That Article on Low Thyroid
Q: I by mistake deleted your newsletter this week and it was so very helpful re: Thyroid. I wanted to copy it and take it to my doctors because I believe I do have a thyroid problem BUT the blood work keeps coming back normal. In this article it did say the test to have the doctor order which is supposed to be a lot more accurate. If it is possible could you PLEASE e-mail that particular newsletter to me? I would much appreciate it. Thank you! - K
A: Dear K - Here are links to a couple of recent thyroid articles you might find helpful. Hope they will be!
• From the December CFS/ME HealthWatch “Are All People with ME/CFS and Fibromyalgia Low Thyroid?” by Dr. Kent Holtorf (founder of the National Academy of Hypothyroidism).
• From the September Wellness HealthWatch – “An Integrative MD’s Primer on Low Thyroid Diagnosis, Therapy & Diet,” by Dr. Richard Podell.
PS: You can always go into ProHealth's newsletter archives to find links to back issues of the ME/CFS, FM, or Wellness newsletters (www.prohealth.com/bulletins/index.cfm)
Australian Good Doctors List Needs to be Beefed Up
Australians please note, this Co-Cure listing of doctors (http://www.co-cure.org/AU_ALL.htm) includes only four names. The list has not been revised since 2009, and a great deal of research is being done in Australia, so new recommendations would be a great help. Also, notes of any changes would help keep it up to date.
Not Australian? Then click on Co-Cure's international Good Doctor List Index at the bottom of Australia page and look for contacts in your area. Is your good doctor there?
Columbia's Trial of Nutrients for ME/CFS Mitochondrial Repair
Re: "Trial of therapy for CFS as mitochondrial dysfunction at Columbia"
• … I have regularly been taking all of the supplements listed here for the past year (and the antioxidants regularly since onset), plus D-Ribose daily. Although I perceive that there is some positive impact on the symptoms, it's very limited, and the benefit is more in aiding recovery from crashes rather than preventative of them. However, I have been unable to improve my physical conditioning, as even small amounts of sustained exercise cause me problems every time (since relapse 2.5 yrs ago), and I think that the reconditioning aspect may be crucial in facilitating the production of better functioning mitochondria. This article was useful: www.drmyhill.co.uk/wiki/CFS_-_The_Central_Cause:_Mitochondrial_Failure - T
• Treating the symptoms or the cause? It's good to see clinical nutrition being studied as a part of the treatment plan for mitochondrial dysfunction in ME and CFS. It would be interesting to have some scientists find out why the mitochondria seem to slow down, become sluggish after an effort. To make a comparison, could mitochondria become exhausted as adrenals? - M
• For further info on why mitochondria slow down and become sluggish after exertion in CFS, the following article provides a good hypothesis. It's about the recycling of ATP from ADP and damage to cells from free radicals: http://www.drmyhill.co.uk/wiki/CFS_-_The_Central_Cause:_Mitochondrial_Failure - T
Portland's Frida Center - FM Doctors & Nurses Offer Clinic Plus Community
Here's something many other communities need. The Frida Center for Fibromyalgia in Portland, Oregon debuted its community space on December 16. Open every weekday, the Frida Center, named after FM patient Frida Kahlo, is an integrative medical clinic that now includes a space for community and non-medical activities (The Studio).
The Clinic offers the expertise of:
• Medical Director Ginevra Liptan, MD (also an FM researcher at Oregon Health & Science University), who manages and treats FM patients using evidence-based therapies.
• And Cheryl Hryciw, a Nurse Practitioner specialized in fibromyalgia with a focus on FM as a function of abnormalities of/injuries to the cervical spine. For 10 years previously Cheryl managed the OHSU Rheumatology Clinic & School of Nursing Research Group.
The new Studio offers classes, courses, events, arts and community – for both female and male patients and spouses.
Temperature Control Bed Pad Helps Her Sleep
Something that really helped me sleep at night, and helped ease the pain, was the ChiliPad [www.ChiliTechnology.com]. It's a mattress pad - they make them in all bed sizes. You can set the temperature of your bed anywhere between 46 and 118 degrees. Cooling off the bed by 15 degrees every night helped me get to sleep.
Life with Fibro at 72 - Guaifenesin Makes it Brighter than 30 Years Ago
When I was a child, I was very active physically (playing basketball, swimming, hiking, etc.) Every once in awhile, however, my legs would lock up and I couldn't bend them. At first they thought it was polio, but I didn't run a fever, so they sent me to bed for a day and my legs would recover. In my 40s my fibro became so bad I wanted to die. I didn't know what was wrong at the time. I heard about a workshop on fibro so I went and it was such a relief to know that there were others with the same symptoms. I pursued my problem with doctors and my own doctor didn't believe in fibro; another specialist that dealt with rheumatoid diseases tested me but didn't know if what I had was fibro or just low thyroid. Later, under the care of another doctor, my thyroid was brought up to normal but the fibro symptoms remained.
The only thing that the doctors seemed to have available was anti-depressants. These made it impossible to for me to think clearly as I needed to do for my "research oriented career" so I decided not to take them. Meanwhile I did my own research and discovered that one didn't need anti-depressants to boost seratonin levels so ones body would produce melatonin to sleep soundly at night. One could buy melatonin over the counter and it worked fine.
For awhile, I also took malic acid with magnesium which helped boost my energy. However, what seemed the most hopeful was reading about guaifenesin. I checked with my doctor and after taking a few tests to make double sure that guai wouldn't have any side effects, she gave me her blessing to work out the best dosage on my own. Six weeks after beginning it, I felt a muscle relax for the first time in probably 15 years. I continue to take it in the morning and before bedtime and I am able to recover somewhat from the day's activity. A massage once a month helps as well to keep me going.
The world out there has many amateur doctors willing to discount one's aches and pains, offer remedies such as "just walk and exercise more", etc. I find it better to keep my pain to myself and get by as best I can. This has been what has helped ME the most, but it is still like walking a tightrope: You have to keep going but watch your step and try to keep everything in balance. Good luck to all of you out there. I am now 72 and life is much brighter than it was 30 years ago.
For Some, Fibromyalgia May Evolve from ADHD
I'm sure this only applies to a small number of fibromyalgia sufferers, but since I got complete relief after 17 years of progressively worsening pain and fatigue, and nearly all of the typical symptoms of fibromyalgia (following a serious car accident), I wanted to share this. I discovered that I have adult ADHD, since both my children have it actually, and the psychiatrist I saw asked me about my fibromyalgia and chronic migraines.
Apparently, it is quite common for untreated ADHD to evolve into fibromyalgia over time. This sounded far fetched to me, but after one month on ADHD meds (low dose stimulants), I felt normal for the first time in my life. My sleep was normal, I could think clearly, I have energy, and most of all, the pain and stiffness was completely gone! Six months later, I still feel great and pain free.
I don't take any other meds, except occasional migraine meds (I rarely get any now, and went off the daily preventative pills). I would encourage anyone whose stress, fatigue, and mental functioning is worsening over time, especially if you have a family history of ADHD, to take a look at the checklist. This was an incredibly easy fix for me, and it changed my quality of life within weeks. – V
15-Week, 33-Center Trial of Pregabalin for Adolescent Fibromyalgia
This placebo-controlled trial is currently recruiting participants ages 12-16, according to a Dec 15, 2011 update (ClinicalTrials.gov # NCT01020474). Centers are located in many US cities, as well as across India, the Czech Republic, and Taiwan.
A Low Oxalate Diet Helped Me
[Note: Oxalate is high in certain plant foods (like spinach). For various reasons but especially if the helpful bacteria in the gut are compromised and/or there is gut inflammation, larger than normal amounts of oxalate are absorbed into the system where they can link up with calcium and crystallize, causing tissue irritation and pain.]
My story: I started the low oxalate diet after joining the Vulvar Pain Foundation (19 years ago). The low oxalate diet has been a huge part of my healing journey! I am now 80% recovered from my vulvar pain symptoms, and 100% recovered from my fibromyalgia, chronic fatigue, intestinal, mouth, skin, bladder and eye symptoms. I have no pain in my joints or muscles anymore, except in the site of an old knee injury. I occasionally have soreness in my old trigger points the day after a very strenuous workout (I used to be an elite athlete). I also have lots of energy to chase my 3-year-old twins and pursue a PhD in environmental economics.
During my recovery I also started a controlled carbohydrate diet (still follow) where I eat very low on the glycemic index and make sure I have a 30-30-40 balance of protein, fat, and carbs at each meal. I also was on guaifenesin for about 10 years during my recovery and am positive it helped me, although I'm not convinced it helped me in the way it was supposed to. I take calcium citrate and Vitamin B6 which support a low oxalate protocol, but I take no medications and haven't taken any since about two years into the diet. I can't tell you for sure what role gauifenesin played in my recovery, but I can tell you that the low oxalate diet and the controlled carbohydrate diet were very important - so much so that I'm committed to this way of eating for life.
If you do try a low oxalate diet, please know that it is a recovery of months and years, not days. I saw some relief in my vulvar pain symptoms within a few weeks, but most of my healing happened slowly over about six years. Also, please get the most up-to-date information on oxalates. A lot of info on the web is out-of-date. The Vulvar Pain Foundation is a good source of information as is the Autism Research Institute's Oxalate Project (and the Trying Low Oxalates Yahoo Group). My blog (http://LowOxalateFamily.wordpress.com) has links to these sites and to others in the FAQ page if you wish to read more about oxalates and the low oxalate diet. - H
Trials of Flu Vaccine Effect on FM & Omega-3 for Pain in Tel Aviv
Tel-Aviv Sourasky Medical Center will be recruiting fibromyalgia patients for a trial of influenza vaccination effects/effectiveness in 2012(ClinicalTrials.gov # NCT01465477). In a similar previous trial, these investigators established that influenza vaccination is safe and effective for rheumatoid arthritis patients.
They will also be recruiting for a large study (300 subjects) of Omega-3 PUFA levels in fibromyalgia patients vs healthy controls and Lupus patients (ClinicalTrials.gov # NCT01460680). They will see if they can link PUFA levels to severity of physical symptoms (e.g., pain) and mental symptoms (e.g., depression). They previously established an association between low omega-3 PUFA levels & Lupus.
Prescription Hope May Help Low-Income with Low Cost Meds
Prescription Hope offers a way for patients with financial hardship to obtain low-cost prescription medications. Following is a description of the program we found on www.LymeDisease.org’s “Touched by Lyme” blog:
“More than 180 drug companies offer patient assistance programs, which offer free or low-cost drugs to people who can’t pay for them, including many of the drugs commonly prescribed for Lyme patients. But all these companies have different rules and paperwork requirements. Tracking them down and dealing with complex application forms can be beyond the capability of a person who is extremely ill (or their beleaguered caregiver). It’s been reported that only 3% of the patients who apply on their own to these programs ever receive benefits.” [This program, if you earn $30K or less single, or $50K married can help. Allows Medicare but not Medicaid participation.]
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 illness, condition 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.
ProHealth offers a wide range of nutritional supplements for optimal health.*
*These products are not intended to diagnose, treat, cure, or prevent any disease.
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