DOMS' NEWSLETTER

January 23, 2008

A compassionate and informative newsletter for people with Fibromyalgia (FMS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (ME).

#14 "BETRAYAL OF THE BRAIN" - book about CFS by Dr. Jay Goldstein

#15 DOES FIBROMYALGIA REALLY EXIST? - controversial New York Times article

#21 RELATIONSHIPS & FIBRO - is fibro messing up your world?

#23 DOM'S UPDATE - feeling pretty well these days

1. READERS WRITE

"Just a quick look through your website www.fms-help.com and I'm hooked!! Finally! Someone who understands!! I'm so tired of the docs not doing anything for me! Thank you thank you thank you!!"

"I love your newsletter......keep it up!!"

"Your website is wonderful and reading various articles and comments from others also boosts the morale. Unless you have this illness, you just can't imagine what it does to you (and your life)."

"I want to thank you for your site. It has helped me so very much in this struggle of fibromyalgia."

"You are becoming a guru for so many of us. I thank God for you."

"Love your website."

"I look forward to reading your newsletter every time I see it in my mail box."

"What a blessing to have found your site!"

"Discovering your website few years ago, after CFIDS robbed my beautiful daughter of her health, has meant more to me than words can explain."

"I receive your newsletter and it is wonderful."

"I really enjoy your website, and I am so glad that I came across it."

2. RATE YOUR DOCTOR

Link from a reader--

3. PERSONAL TRAINER

"I can Exercise!!!!! Just walking to the mailbox is impossible sometimes. But I started working with a personal trainer, and she is wonderful. Before we started working, she went through your site and researched the medical aspects of fibro. Your website helped her understand what it is like. I've been in this daily struggle for 5 years now and I'm determined to get some of my life back.

So we still use basic moves, lots of stretching (only when muscles are warm). It actually helps ward off flare-ups. I take a low dose muscle relaxer and rub on some icyhot before working with her. we don't do a lot of cardio, because it makes me so tired. After working with her for 6 months, I have more strength/energy than I've had in years. I've lost weight and haven't had to use my pain meds nearly as much as before.

I live in DC and my trainer's email is aveopt@hotmail.com. She develops programs that you can do on your own, so you don't incur the cost of having to see her every time you exercise. You have to meet with her at least once, so she can gauge your current physical condition. If anyone wants to contact me about her, feel free to email me at Insatiable_dove@hotmail.com .

I just want other fibromites to know that it is possible to get the same benefits other people get from exercise."

4. SWEATING & FIBRO

Responses to Topic 9 at www.fms-help.com/011208.htm--

"The sweating happens to me too. If I'm cooking I have to open a door as I feel like I'm going to suffocate from the heat. I get really hot at night or just sitting in a chair, my back starts to feel like its on fire. Getting out of the shower is a bad one, if I'm in a hurry to get ready to go somewhere and have to blow dry my hair right after my shower. I find if I become excited or stimulated I start sweating too. My mom has fibro and experiences this as well."

Wow! Reader 1 and me must be clones!!

"i believe it all comes from the hypothalamus/pituitary gland - which is the master gland. dr. john r. lee m.d [which has passed but still has a website and has written on it and the dance of the hormones, people do not understand how much the pituitary gland does including adrenals, female hormones, and thyroid concerning auto-immune disorders. if someone has these problems: dr. daniel kelly and dr. peyman cohan in california have a wonderful site and it is cutting edge info."

5. VULVODYNIA & FIBROMYALGIA

Very helpful site sent in by a reader--

6. VULVODYNIA & IRRITABLE BOWEL SYNDROME (IBS)

"I also had this awful problem when I had the severe yeast overgrowth. The itching and burning was severe for over a year. It got worse as I used Vicodin for sciatica and other pain. After starting on the anti-fungals and the probiotics, the pain and itching decreased and finally went away, although it didn't happen overnight. It took quite some time but I kept at it, taking as many anti-fungals as possible and also lots of probiotics. I started a liver cleanse with silymarin and chlorella, the burning also started but not severely. Of course, the more I take to cleanse the worse it is, so I must have a very sick liver, but then, I took many, many pain pills and a lot of other prescriptive medicines, including antibiotics, for years and years, so there's a lot to cleanse out. I can handle this burning as I want my liver back to total health.

I will report in again, as I continue this process. I hope this helps all who have this awful problem. The lady said in her e-mail www.fms-help.com/011208.htm said that she thought her IBS and vulvodynia were connected. I agree, it's all yeast related and when you get the small intestine back to normal, most problems will straighen out. Mine has. I've been at it for 2 and 1/2 yrs and I'm almost well. Two different naturapath's told me it could take 3 yrs to get totally well and I'm almost there."

7. PREGNANCY & FMS/CFIDS

From a reader--

"I have been told by an alternative doctor that women with Fibro and CFS feel better while pregnant is usually from the added hormones (progesterone is one I would guess) and also, the mother draws off of the baby's adrenal glands. I have to admitt that when I was younger and did not have CFS I felt great while pregnant and after pregnancy, but both of my children have poor adrenals at a young age (starting in the teen years)."

8. DOM'S SUPPORT GROUP

The support group started on Dec. 2. There are now 226 members at http://health.groups.yahoo.com/group/dominie - any of my newsletter readers with FMS, CFIDS or ME are invited to join. TIP: Sign up for Daily Digest or Web Only to avoid lots of emails. And please follow the rules of etiquette when using the message board (there's a great article about this at http://www.albion.com/netiquette/corerules.html). It makes me feel great to know my readers are reaching out to one another with info and support for our poorly understood disorder.

9. VITAMIN D DEFICIENCY

Vitamin D deficiency and fibro has been mentioned a number of times in past newsletters (see archives at www.fms-help.com/newsletters.htm). Just got this from a reader--

"My naturopathic physician determined that I had a vitamin D deficiency by running some blood work...so she put me on 60,000 mcg of vitamin D to take 1x a week for 3 months. It seems to have helped with the uncomfortable bone pain I feel from time to time. I still have extreme tender points upon touch. Maybe in time it will help with that too. Who knows!"

10. EFFEXOR & SWEATING

From a reader--

"When I was going through massage school (diagnosed with FMS the day school started!!!), I was constantly hot and sweating. Before that, I had the "cold to the bone" feeling that most of us have. I had just started on Effexor. On our mid-term exam, we did a hands on massage on the instructors. Was I ever embarassed. I was sweating profusely. So much so, that a sweat bead rolled off my forehead, took a dive off my eyelashes right onto the instructors back! Since going off of Effexor Sr, I haven't had that problem."

I ran into a friend the other day and we were talking about sweating, something which I do a lot of and it's miserable and annoying! It's been going on for many years now. Of course, living in hot, humid Florida doesn't help, but I've come to believe that my sweating problem is because my temperature control mechanism doesn't work (a CFIDS problem). It's also related to my nervous system. I have "hot flashes" even on cold days. I don't think it's female hormone related, because I've tried all those drugs/supplements and they don't help. I had a total hysterectomy 20 years ago, so I've already been through surgical menopause. Anyway, my friend said her doctor put her on Effexor and she was sweating all the time. When she got off of it, upon the recommendation of her personal trainer, the sweating stopped. Interesting.

11. STRESS MANAGEMENT

Got this via email - it is soooo good!!!

A lecturer when explaining stress management to an audience, raised a glass of water and asked
"How heavy is this glass of water?"

Answers called out ranged from 20g to 500g.

The lecturer replied, "The absolute weight doesn't matter. It depends on how long you try to hold it.
If I hold it for a minute, that's not a problem.
If I hold it for an hour, I'll have an ache in my right arm.
If I hold it for a day, you'll have to call an ambulance.
In each case, it's the same weight, but the longer I hold it, the heavier it seems to become."

He continued,
"And that's the way it is with stress management.
If we continually carry our burdens, sooner or later, the burden becomes increasingly overwhelming , and we’re not able to carry on. "
"As with the glass of water, you have to put it down for a while and r est before holding it again.
When we're refreshed, we can carry on with the burden."
"So, before you return home tonight, put the burden of work down.

Don't carry it home.
You can pick it up tomorrow.
Whatever burdens you're carrying now, let them down for a moment if you can."

So, my friend, Put down anything that may be a burden to you right now.
Don't pick it up again until after you've rested a while.

12. HOW CELL PHONES ARE KILLING BIRDS (AND US)

http://articles.mercola.com/sites/articles/archive/2008/1/15/how-cell-phones-are-killing-birds.aspx - click on this article and scroll down to read Dr. Mercola's comments about cell phone danger to humans - here's a short snippet:

"We are in a geometric explosion of cell phone use, which causes the following physical problems:

Damaging your cell membranes
Decreasing intracellular communication by disrupting microtubular connections that allow biophotons to communicate between cells
Increasing deposits of heavy metals into your cells, which increases intracelluar production of free radicals, and can radically decrease cellular production of energy, thus making you incredibly fatigued

"My doctor told me that Lyrica is very toxic."

"Beware the Lyrica, even if you wean off it, it has nasty withdrawal symptoms, e.g. severe depression, tears, wanting to end it all. No one will tell you this officially, however."

"I took Lyrica and was in a coma for weeks - I was doing nothing but sleeping."

"I was diagnosed with Fibro 9 long months ago. After trying Neuronton with no results, a pain management dr put me on Lyrica. I was taking 50 mg 2 times a day. In 6 days, I was able to lay down without feeling like my back was going to break in two! My dosage was increased gradually til I was taking 100 mg 2 times a day. That's when I started hallucinating. It was only at night, thank goodness, but it was so weird! I would see black swirly designs in my room floating around in the corners, a door jam was a lit cigarette, plastic clothes hangers would explode into a million pieces. When I saw bubble wrap on my toilet seat, that was it- I had to get off of it! I now take Lodine. It doesn't take the pain away entirely but it makes it manageable- for the most part- on good days. It's hard to come to grips with something that isn't even widely recognized that has changed my life! There are many times I can't even get my clothes off by myself. I get out of breath walking up stairs. I get stiff if I sit in one place too long and when I try to walk after sitting, I look like an OLD lady. I can't sit on the floor with my legs crossed and play with my niece. I have a terrible time walking any distance, like airports. I feel like I need a handicap sticker for my car and a wheelchair at times, but it's very hard for me to accept the things that I can't do anymore. I would appreciate hearing from people who have gone thru this. I know I'm not alone. It certainly is an isolating syndrome, isn't it?" Reader 4 made these comments on my message board at http://health.groups.yahoo.com/group/dominie/ - if you haven't yet joined Dom's Support Group, you may want to so you can exchange comments with other fibromites. (Sign up for DAILY DIGEST or WEB ONLY if you want to avoid a lot of emails throughout the day.)

"I tried increasing my Lyrica dosage and I couldn't see properly, felt "high"- couldn't take it! it is hard to come to grips with this. I try to accomplish one thing a day (if I can) and for me the hardest part is learning how to say "no' to people when you just aren't able to accommodate them.As women, we try to be all things to all people and accepting that I can't do that anymore is very hard for me.It's hard to make plans in advance because you don't know how you will feel on that day. I have found this group to be very encouraging and it makes me feel better to know I'm not alone."

"I have been taking 50 mg of Lyrica twice daily for about a year, it was upped to
200 mg daily at one time but gave me memory loss problems and
constipation, so we had to lower it down to 100 per day. Does really
good, and I only have to take 50 mg ultram twice daily with it and
this usually helps me get thru most of my days. There is some weight
gain associated with it, very little though, not more than 5 lbs, and
it is usually fluid, but it is worth it!"

For more readers' comments on Lyrica, go to www.fms-help.com/newsletters.htm and type Lyrica in the search box (then use ALT-F to find Lyrica on a specific page). For natural pain relief I have found over the years, see www.fms-help.com/painrelief.htm - I had awful pain during the first 14 years of my fibro experience, but no pain now. Everyone is different, but it wouldn't hurt to try some natural things and they also won't cause dreadful side effects.

15. DOES FIBROMYALGIA REALLY EXIST?

Believe it or not, this question was put to a vote on AOL last week - they had printed an article from the New York Times that created quite a stir among the FMS community. Below is info submitted by Shari Ferbert (President of AAFTER, a fibro support and advocacy group) regarding a radio broadcast about the NY Times FM Article--

"I worked 7 days a week for most of my life before this and concomitant illnesses struck. I dare for anyone to call me lazy! Many folks don't know that CFS, FMS and dysautonomia often go hand in hand. I was diagnosed last May with dysautonomia and now have to learn to cope with this ailment which has made my life ever more challenging. We have to remember that before the advent of MRI technology that diseases such as MS and Parkinson's were considered "mental illnesses" and these victims were often remanded to back wards of state mental hospitals."

See my page on dysautonomia at www.fms-help.com/dysautonomia.htm.

17. WEIGHT, ANTIDEPRESSANTS & EXERCISE

"I am managing my fibro at this point, and do not feel the possible side effects from Lyrica are worth me trying it....I already gained close to 70 pounds when I started low doses of Zoloft and Elavil years ago. And of course, I have not been able to get rid of the extra weight. I have enough energy to get through my daily chores, etc., but I can't seem to add a daily exercise routine to each day and not have to pay for it. Sigh. Maybe in '08 I will try to exercise once again. The battle continues."

18. LEAKY GUT SYNDROME

Leaky Gut Syndrome - The intact intestinal lining is the main barrier between the environment and our immunity - may be a refresher course for those of us suffering - see http://askwaltstollmd.com/lgs.html."

19. HAIR DYE & CANCER

"A 1994 National Cancer Institute report found that deep-colored dyes (like dark brown and black), when used over prolonged periods of time, seemed to increase the risk of cancers such as non-Hodgkin's lymphoma and multiple myeloma. Meanwhile a 2001 study by the International Journal of Cancer found that people who use permanent hair dye are twice as likely to develop bladder cancer as those who go au naturel regarding hair color."

From Gloria at gloriab@netzero.net--

HAS ANYONE OUT THERE WITH FIBROMYALGIA HAD A PROBLEM WITH SCIATIC NERVE? I'M HAVING A TERRIBLE TIME AND WILL BE STARTING PHYSICAL THERAPY THIS COMING TUESDAY. I SURE HOPE IT HELPS. MY RHEUMATOLOGIST PRESCRIBED IT, OF COURSE. MY RHEUMATOLOGIST ALSO PRESCRIBED THE NARCOTIC, ULTRAM (TRAMADOL) FOR THE FIBRO PAIN. I'M TAKING 200 MG PER DAY. SO FAR, SO GOOD. I WOULD LIKE TO HEAR FROM OTHER FIBROMITES WHO ARE TAKING ULTRAM OR WHO HAVE TAKEN IT IN THE PAST. PLEASE E-MAIL ME @ gloriab@netzero.net."

21. RELATIONSHIPS & FIBRO

Are you relationships suffering because of your fibro? Here are some helpful articles on my site--

23. DOM'S UPDATE

I'm feeling well and doing great (for me)....still teaching music www.fms-help.com/students.htm and serving as church pianist, etc. I'm very fortunate that I can teach afternoons and evenings only - no mornings!!! I continue to use my protocol at www.fms-help.com/what.htm. These things help me function, but I know we are all different and this illness has a lot of ups and downs, with stress being our worst enemy!

My latest thrill? I bought a digital piano that does everything but wash the windows! I really want to make another CD soon with some vocals on it too. (The down side of my investment? I will be 63 when the piano is paid off......yipes! I'm getting old!)

I added a new page www.fms-help.com/bible.htm to my site this week about the King James Version of the Bible, which I love! Listening to scripture tapes keeps my spirit uplifted. I enjoy listening to the tapes when going to sleep, doing chores, or if I can't sleep right away, at least it gives my mind something positive to dwell on.

fibromite since 1982

DISCLAIMER: I am not a medical doctor. I am a fibromyalgia/chronic fatigue syndrome survivor. The purpose of this website is not to diagnose or cure any disease or malady, but is presented as food for thought. This information cannot take the place of professional medical advice. Any attempt to diagnose and treat an illness should come under the direction of a physician. No guarantees are made regarding any of the information in this website.