NFA’s Fibromyalgia AWARE Magazine Available Online Free
FYI, the Winter 2010 issue of the National Fibromyalgia Association’s Fibromyalgia AWARE magazine is available online for free. (Go to www.fmaware.org.) You have to register with the NFA to access the magazine free. – B
Study of Thyroid Hormone T3 for Fibro at Stanford
When I was looking for Fibro information at the Stanford Pain Management Center [Palo Alto, California], I came across this announcement of a clinical trial of thyroid hormone T3 as a treatment for fibro symptoms – http://snapl.stanford.edu/t3/. To be eligible you have to have daily pain & can’t have thyroid disease, high blood pressure, or diabetes. – S
Info on Low Dose Naltrexone for Fibromyalgia Pain
• This is a new LDN Science site owned by Scientists and Doctors with abstracts of all clinical and pre-clinical trials (http://www.ldnscience.org/low-dose-naltrexone-ldn/published-research-about-ldn) on LDN, opioid growth factor, and related therapies. This is the best LDN site I have seen by far. I highly recommend this site to everyone who is interested in learning about LDN or looking for information to take to their doctor and share with friends. There is a newsletter so be sure to sign up for updates. – J
• FM Patient’s 1-Year Low Dose Natrexone Testimony. I thought I’d share this one. This is a person from the LDN Yahoo Group. (I’m on my 3rd month of very low dose for FM and OA issues.)
“Today is my 1 year anniversary for taking Low Dose Naltrexone (LDN) for my fibromyalgia. What an interesting year it has been. As we all do, I started out with high hopes. I started out at 4.5 mg LDN at bedtime and was one of the fortunate ones who didn’t have any side effects. About 6 months previously, I’d had a sleep study done that showed that I was getting zero REM sleep. After a few days I realized I was dreaming again. I also started to feel as though I had more energy.
“It took about a week and a half to notice that my pain wasn’t as severe, but that seemed to vary a lot in the next six months. I started out with a daily pain level of 6-8 on a scale of 10. That was with taking Tylenol Arthritis (the only pain drug that didn’t cause me stomach upset or other problems) around the clock. Gradually as my pain lessened I noticed I was forgetting to take a dose here and there. Now I rarely take anything and my pain levels average 0-3. I then noticed that I didn’t seem to need to take my Mirapex for my restless legs syndrome as much. I started cutting back on it until now I take 1/4 of what I did before. Since I was feeling better, I decided to see if I could cut back on my anti-depressant too. I gradually cut back on it until I wasn’t taking or needing to take it any more.
“At around the second month, I caught (or my body recognized) a severe virus. I was really sick, but for only 4 days. Usually I would end up in the doctor’s office or even the hospital, but even though my husband kept telling me I should see the doctor, I kept saying I didn’t feel that bad yet. For the first time in years I didn’t need an antibiotic but fought off an infection myself. At around the 8th month I did get a bladder infection for which I did take a dose of antibiotics, though. Otherwise I haven’t really been sick since. Very unusual for me to go that long without being sick with something.
“A year ago, I was in bed 16-18 hours a day. I had to force myself to get up and just do the basics of life. Now, I’m cooking again for my husband. I can vacuum the floors again. I’ve even applied for a job. I can’t believe what a difference a year has made. I want to thank Stanford University for doing a trial of LDN for people with fibromyalgia and Crystal (Angelindisguise) for mentioning it on the Restless Legs Syndrome Yahoo group. I also want to thank all the wonderful people that I’ve met along the way in my journey to learn more about LDN and help others learn about it too. Hopefully, my example will help others get some real relief from fibromyalgia pain as well.”
The Good News Re MD Fear of Prescribing Opioids for FM Pain
This is good research (replicating prior research) showing that the main excuse (fear of addiction) for not prescribing opioid pain meds is not a good one. I hope this will be convincing to some doctors who need a push. (No pun intended…) “Little Risk for Addiction From Long-Term Opioid Use in Select Chronic Pain Patients,” by Pam Harrison, Jan 20, 2010. – V
Text of Mikovits Lecture?
Q: I am extremely hard of hearing and I cannot hear videos. Is there a possibility that the Dr. Mikovits lecture can be put into text form?
A: Blogger “thefreeprisoner” has transcribed the first 27 minutes – Annette Whittemore’s introduction and the first part of Dr. M’s lecture. The link for that is at Phoenix Rising’s XMRV Forum. One attendee recorded all the audio, but transcription of the remaining 2-plus hours would clearly be a huge task.
Video of Dr. Bell’s Jan 15 XMRV Lecture in Orange County
The video of Dr. Bell’s presentation is now up on his site – www.DavidSBell.com. Click on “The Barborka Family Presents…” To enlarge the screen for viewing click on the vimeo symbol (then esc to minimize again). Also, the ChronicFatigueTreatments blog has posted one attendee’s summary of the presentation.
Dr. Bell’s conclusion (“slide courtesy of Dr. Nancy Klimas”):
• This new virus is a very big thing
• It is a very hopeful thing
• The research necessary to bring treatments that are effective is already being mapped out
• You can make a difference
• Spread the word – P
Nonaerobic Exercise Ideas for FM
• Yoga is a good addition to exercise for fibro sufferers. Hatha yoga is a very gentle yoga [“likely to be slow-paced stretching with some simple breathing exercises and perhaps seated meditation”]. Might also consider adding Vinyasa or more vigorous forms of yoga that are very popular these days. – R
• I tried yoga, no go for me even though it was a class for people with limitations… I liked “t’ai chi chih!” The arm movements are easier for me and haven’t set anything off. I want to start a laughter yoga group… Now that’s exercise, laughing… I always feel exhausted but so good if I get the chance to get a good belly laugh – V
Mayo Trial of Amygdala Retraining – Waste or Worthy?
• What about symptom cyclicality? My son – like many PWCs – has a relapsing/remitting pattern of disability from CFS where he does well until the end of Oct/early Nov, crashes through the mid-spring, & then slowly builds up his strength. If he were in this study in April, it might show “success”; if he were in this study in Oct, it would show to be devastating. This issue of seasonal timing has to be taken into consideration in any CFS treatment trial. – D
• It’s definitely doing something for me. I fall into the FMS/Lyme disease category. FMS diagnosis 10 years ago and 2-1/2 years ago optic neuritis with neurological/new symptoms/very sick. Positive IGENEX. All kinds of herbal programs for Lyme with no improvement. I’ve been doing the amygdala re-training since about April 08. I saw good improvement within a month -brain fog improved and entire nervous system calmed down. Eye pain went away. Now 8-9 mos into it, I have hit a plateau but still doing MUCH better than where I was a year ago before starting the techniques. I’m able to function well, travel for work, have the joy and excitment back in my life. Am I cured? Not yet. I still suffer from the neuro symptoms, but much much less and my tolerance to stress is much higher with no increase in symptoms. When I have a setback I recover much faster.
….All in all I’d say it is definitely doing something. I’m constantly amazed by the negativity regarding this program. People are willing to take all kinds of experimental drugs but not experiment using the healing power of the mind/brain/body. I continue to do other therapies as well – but the major difference in my habits has been this program… I know it’s the one change I made where I got major benefit. I’ll check back in a few months and let everyone know if my optimism still holds. This program has given me back hope and a feeling that I am in control again. – H
• Guys, why not be really avant-guard and study hysteria or spirit possession or how inadequate mothering produces schizophrenia? I am horrified that the Mayo Clinic is associating itself with this tripe. – T
• I am very disappointed about Mayo Clinic testing this when there are so many other conditions, treatments that are worth studying. – G
Here’s a cute XMRV cartoon. – E
Check Out Online FM & ME/CFS Dating Sites
Made to order: There is a CFS/FM Yahoo online dating site. People like us hoping to hook up with other people like us. And to share useful information as well. I just checked really fast using keywords “CFS” or and “singles” and at least 3 groups… came up on the first page alone. – A
XMRV Test Refinements – and Costs
• Great news! Hopefully this will put to rest the faulty study in the UK. – C
• I am so excited about the XMRV findings. The info states that they have decreased the cost to $450. So many of us with CFS and or fibromyalgia aren’t working because we are so ill. I haven’t worked for 17 months as I wait forever to appeal my denial for disability. My lawyer states we have a good case but having to wait 10 months for the appeal has drained me financially. I am sure there so many other people in common with that. The cost of the test is just not practical.
Note: One way to be tested free would be as a participant in a research study by Whittemore Peterson or some other research group. There’s more info on this question and the subject of tests & testing in the Jan 22 Mikovits seminar and Q&A videos. Meanwhile, WPI offers an online questionnaire for people who would like to be considered for participation in current or upcoming clinical trials (or just to include their information in the research database) at https://www.wpinstitute.org/patient/volunteer_form.html.
Need Doctor to Check for Leaky Gut – Referral List, Anyone?
I am most certain my fibromyalgia is now really Leaky Gut Syndrome and am looking for a good doctor in my area. Any suggestions for where to find a list, or good doc who specializes in this? – J
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.