DOM'S NEWSLETTER

November 14, 2007

Special Edition

Topic #11 - Dom's Update

A compassionate, informative newsletter for people suffering with fibromyalgia (FMS), chronic fatigue immune dysfunction syndrome (CFIDS) or myalgic encephalomyelitis (M.E.)

TOPICS ARE IN PURPLE. MY COMMENTS ARE IN TEAL.

1. READERS WRITE

"I so identify with you and everyone here. Your site www.fms-help.com is excellent and I have made it one of my favorites."

"I love your newsletter, and look forward to it."

"Thanks for your comments and web presence. Good luck with your battle."

"I can’t express how much your newsletters, little messages, etc. have helped me, and it always brightens up my day to see your name in my email inbox."

"Thanks for all you do - your newsletter is one of the things I always read."

"I really enjoy your newsletters and get so much out of them."

"Thank you for all that you do to help others realize they are not alone in their struggle to get their lives back!"

"Keep up the good work with your wonderful site and feel as good as you can."

"I am one of your very thankful readers. I look forward to your advice column every week!"

"Appreciate your site www.fms-help.com very much."

2. FLU SHOT?

From a reader--

"I hope FM sufferers are not taking flu shot. It contains mercury and formaldehyde. Things we are trying to get out of our body."

3. DISABILITY INFO

From a reader--

"You might want to include for future reference the disability section of the WELCOME PACKAGE...the man who wrote it for us is David Budlin. He worked for Social Security for 25 year and has helped hundreds on AOL Disability message boards. He is truly and expert in his field.... see www.fibrowelcomepackage.com."

4. ESTROGEN DOMINANCE

From a reader--

"I just had a breakthrough and wanted to share with everyone my success! In my gut I always had a feeling that my fibro pain was nutritional/hormone related. And well... I had my hormones tested via a salvia test and it came back that I had estrogen dominance. So I've been taking natural progesterone therapy cream now for a few days and am feeling better and better every day!!! I was also taking B complex(3 caps a day) and MSM (also 2-3 caps a day) prior to that and feel it too was a piece of my puzzle... it took the edge off the pain! I feel I have most likely found the answer. I can give you an update in a month or so if you like, and would be very happy if you wouldn't mind adding this to your column. Also, if anyone wants more info on the specifics of anything I use or the holistic center who did my saliva test, they can feel free to ask away. I am very excited that I am feeling better. I want to tell everyone!"

I tried this approach and all these things many years ago. I think it helped some, but now at my current age of 56 my estrogen level (recently tested) is almost nil. You can read more about estrogen dominance by looking up Dr. John Lee (now deceased).

5. COPING WITH FIBRO & STRESS

From a reader--

"We must say NO more often in order to survive, and that's OK!"

6. ITCH QUESTION

Please respond directly to Dottie at bsccook@aol.com--

"I have fibro and was diagnosed in 1986 so I can understand your problems. Mine have been many....I have been on Lodine (anti-inflammatory) for years, and have tried to not use it and can hardly stand the pain all over. I have been on Celexa fro a year or so and it helps some also. Amitriptyline 20 mg is my night time rx. I have been on it for years....I have glaucoma (eyes), asthma (simvastin is my rx), just diagnosed a year ago. I am reaching out for help now because of a problem with my scalp and underarms. I have little itchy pimples that break out on the scalp and underarms everyday. The internal med dr. (my regular) said it is just nothing and will go away. (I got that answer about 6 years ago.) Since then, they are now on my underarms. These itch a lot.....I went to a local herb shop and they said my lymph glands were not draining correctly. I took their g...greek(?) large caplets with no results. Have you ever heard of this? I am now 69 and had to quit work at 58 years as I could not even work part time by then. - Dottie"

7. SLEEP STUDIES

From a reader--

"My daughter (age 14) and I (age 39) both underwent sleep studies by a doctor who specializes in sleep apnea. I would like to let your readers know that they may want to go to a neurologist who specializes in sleep disorders instead. This study was my 3rd and my daughters 1st. I have been suffering from severe insomnia for over 10 years and when I went for 4 straight days with no sleep I was ready to throw myself off a bridge (I didn't even have the energy for that). I went to the hospital and they didn't see a "problem" with that so they were not even going to treat me for the insomnia. Anyway after years of suffering I was finally diagnosed with Fibromyalgia, though very hesitantly from the only Rhumatologist in our area. I have 62 Alpha-Wave intrusions per night and my daughter has 26 per night. This is the reason I suggest going to a neurologist for the sleep study. A doctor trained in the "brain" field will tend to you better than one in the respiratory field. The sleep study picks up the Alpha-wave intrusions either way but the respiratory doctor told my daughter and I that we are "fine." We are anything but "fine." When I expressed to the respiratory doctor that I was outraged that I was told we were "fine". I made them break down the report of the study line by line. They listed the Alpha-wave intrusions as "arousals" but not full awakenings on the reports. I researched the topic of Alpha-wave intrusions myself online and was shocked - there it was onscreen FIBROMYALGIA....wow! My daughter is having a particularly hard time with this because she is 14 and is a freshman in high school trying to maintain her straight "A" average. She is getting her 2nd sleep study on November 19th with a nap study on the 20th at VCU in Richmond VA. They put her on .5 mg of ambien but she hates the day after "hangover" and we both have issues with fibro-fog. I don't know what the final answer will be but my family doctor did stand up and notice that now that my daughter is getting her 2nd sleep study done that maybe all these years I really have been suffering. I hate that my daughter is joining me in this horrible thing. When we started passing each other throughout the night in the kitchen to just get out of bed for a bit, then return as the docs suggested we knew we both had the same problem."

8. LUNESTA & WEIGHT GAIN

From a reader--

"I wanted to add my Lunesta experience…I just got off the phone with the manufacturer…..I started taking Lunesta (2 mg.) on October 26th. For the FIRST time, I finally found something that helps me sleep through the night. I’d tried Sonata and Rozerem, both helped me get to sleep (along with the 100 mg. of L-Theanine, which is an amino acid and 2 mg. of Melatonin). But I can’t stay asleep using them. I tried Ambien, but it made me nauseous. But, I’ve gained 8 pounds in only 2 weeks!!! I’ve gone from 128 lbs. to 136, more than I’ve ever weighed in my life. My hands and feet are swelling as well as tummy AND my cheeks, (the ones on my face AND the ones attached to my behind!). When I called Sepracor, the mfg. of Lunesta they said “Rapid weight gain as well as swelling of the hands and feet” was reported in a small percentage of patients in clinical trials. I am so disappointed, so back to square one. They had no explanation as to why it causes this weight gain, even though it’s supposed to just be a GABA enhancer, which is also a neurotransmitter."

Hmmm. Maybe some of these meds have caused my strange weight gain in the past 4 years. First it was a 4 lb. jump that happened in just a week, then a few years later I had another sudden 4 lb. jump. Dieting or other methods of weight control do not help. It's like my set-point has changed and likes it that way. I now weigh 138, the most I have ever weighed in my life. (Maybe I'm "under-tall" instead of over-weight...ha.)

9. ELECTRICAL ACTIVITY IN THE BODY

From a reader--

http://www.dailymail.co.uk/pages/live/articles/health/healthmain.html?in_article_id=493271&in_page_id=1774&ico=Homepage&icl=TabModule&icc=picbox&ct=5

"Shock to the system: The woman paralysed by her body's own electrical charges"

Makes me wonder about the strange symptoms we get with FMS. Many of us have had neck injuries.

10. TENSE MUSCLES

From a reader--

"I struggle so much during the day with staying awake that I have decided to take myself off of two of my prescriptions one being my Diazepam 5mg and the other my Amitriptylin 75mg which I thought was a bit much anyway. So far I have been awake during the day but cannot sleep at night and my muscles are killing me - it's like I have to stretch them all at once, it is sometimes unbearable so I start with my Rub On ActivOn and then I usually have to take my pain meds sooner than normal to get relief, oh and of course the standard heating pads and sound machine. I do not know how my doc is going to react, I will tell him tomorrow. It is just my thinking, I have been on anti depressants for 15 years at least and I want to try to use my mind to try and heal myself. I have been studying this and I already know how to move my back pain and make it leave (I have a herniated L5) so this makes sense but we will see what doc says. He is very open as he is a D.O. I just need a way to deal with the pain and tightness of my body muscles, I can't control my whole body with my mind, I'm not that strong not yet."

Two things that have helped me with this same situation is magnesium (which helps muscles relax) and a powerful anti-oxidant (which oxygenates muscle and connective tissue). For a list of things that have helped me with pain, see www.fms-help.com/what.htm - scroll 2/3 down the page and look for the red writing. I also wonder about the difference between the "mind" and the physiological "brain." I strongly believe that FMS/CFIDS has a lot to do with how our brain and nervous system operates. I don't think it has to do with muscles, but how those muscles are controlled by the chemicals in the body and the electrical system of the brain.

11. DOM'S UPDATE

BACK TO NORMAL?

What a strange illness this is! Today I felt great! No fatigue or fog at all. Normal again. Yesterday, however, I was miserable and spending time reading about how to apply for SSD - I was almost positive that I would not survive this latest FMS/CFIDS tailspin that I've had for 3 weeks, which was especially discouraging after feeling normal for 4 months. I was a basket case!

I can only attribute the sudden wellness today to a huge let-up in my stress levels over the weekend with our fall piano recital finally over and also another musical program that Donnie and I did. Additionally, there had been a number of tragedies, accidents and emotional stresses that hit close to home this past month which put a severe strain on my nervous system. These situations all resolved (as much as possible) in the last day or two, which relieved my mind of a heavy burden. I am a worry-wart, a perfectionist, and suffer from anxiety and depression at times, so I'm not surprised that my brain chemicals were affected lately with the overload of stressful situations.

It is so strange to feel almost at death's door one day and then feel normal the next day! (If only every day could be as great as today!) No wonder non-fibros can't understand us! This illness is really inexplicable.

I hope I have learned my lesson - something my husband has been preaching to me for years: "LEARN TO SAY NO!" My husband says that when I start to feel better, I always overdo it, and then a crash follows. He said not to use up all of my energy, but save some for the next day. I always seem to deplete my batteries catching up on things when I am feeling well.

Interestingly, last night at the musical event, I met a lady with fibro who told me that restorative sleep and monitoring her stress levels is the only way she can manage her illness. She uses Trazadone for sleep, which BTW was a HUGE mistake for me many years ago. (See the list of things I tried for sleep since 1982 at www.fms-help.com/sleep.htm.) We are all SO DIFFERENT from one another in what helps us, even though we have identical symptoms. No one single magic bullet has been discovered yet for FMS/CFIDS/Insomnia.

Last night, I took a few things during the course of the evening to help me get to sleep by 2 a.m. I have been in a miserable state of sleep deprivation for the past 3 weeks. I took 1/2 Atenolol (to reduce adrenaline in my body, per the doctor), 1/2 Lorazepam (generic Ativan for my sleep anxiety), 1 Lunesta (an expensive sleep med at $3 per pill) and a teaspoon of Tussionex (a $40 per bottle cough syrup that I use occasionally since developing a lung problem from toxic mold in 2005). The meds worked well (this time) and I woke up feeling rested and felt fine all day. I really enjoyed teaching my music students today - what a joy it is to teach when I am not battling debilitating fatigue, physical misery and a nervous system out of control.

With the ups and downs of FMS/CFIDS, no wonder people think we're crazy! It's hard to understand it ourselves! After I got home from work today, I zoomed around the house doing chores and taking care of the dogs. Not a single problem to complain about! So, maybe I beat this last "crash" after all??! But my husband says (ever the pessimist), "Tomorrow is another day."

I will know I am truly well when I can do these 2 things: 1) go on a trip somewhere, and 2) remain functional even when under heavy mental and emotional stress. Right now, I don't think I can do either of these.

Our brain chemicals control our bodies. With fibro, STRESS IS OUR WORST ENEMY! See Tip #1 "REDUCE STRESS" in my 100 Tips for Coping with Fibromyalgia and Insomnia at www.fms-help.com/tips.htm. (Too bad life doesn't cooperate with us on this one!) I have had to back down from a number of commitments that I made over the summer. I must hold to this level of inactivity, or I have no doubt that my system will crash again. It cannot sustain this much responsibility and pressure, unfortunately.

If I could sleep normally, I wouldn't have the horrible feelings of debilitation that occurs during times of stress. My insomnia story is at www.fms-help.com/insomnia.htm. My sleep disorder (began at age 16) has wrecked my life and made me occupationally undependable.

I would like to thank all of my wonderful readers who sent me disability information and other encouraging messages this week. I am still trying to learn about getting SSD because I don't know what the future holds. My life is a mystery to me. One thing I do know is that we fibromites need to stick together! People who don't have this illness can't understand it - even doctors! I am amazingly blessed because my husband - although healthy - totally understands my FMS/CFIDS condition. Not all fibromites have this luxury, so I hope my newsletter will help to affirm and validate FMS/CFIDS sufferers and the strange things they go through.

Til next time - lower ALL STRESS LEVELS as much as possible!

Dominie

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DOMINIE'S FIBROMYALGIA & CHRONIC FATIGUE SYNDROME HOMEPAGE

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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.