Dominie's Newsletter

November 1, 2006

Hello Everyone! This newsletter is for people with fibromyalgia, chronic fatigue syndrome or M.E. Please scroll down to check out 10 short but interesting topics in RED. Some may be helpful to your unique situation. - Your fibro friend, Dominie

From a reader--

"I know you can't reply to every email but I just like to let you know every now and then how tremendously much your site www.fms-help.com and newsletter help me. There is no where like yours with so very much info on so many many different topics that are of such interest to someone such as myself that has an industrial size case of fibro. I cant tell you how much I appreciate the hard work you do for all of us and I just want you to know that you are very very very helpful with this newsletter. I hope it is there for many years to come :) Thank you so much for all the work you do to help us all out."

2. POST-POLIO SYNDROME & CFS

Parallels Between Post-Polio Fatigue and Chronic Fatigue Syndrome: A Common Pathophysiology?

[FROM DOMINIE: I took the polio vaccine on a sugar cube several times as a child. I still remember going with my dad to the elementary school in Pennsylvania for this vaccine in the early 1960's. If you do some research about Simian Virus 40 on the internet -- for instance, see http://www.chronicillnet.org/online/bensweet.html, you will learn that the Jonas Salk polio vaccine was contaminated. It may even be the cause of some of today's current health problems--cancers, CFS, FMS, etc. SV 40 is also passed on to offspring, according to some medical research. This may explain the unusual cancers afflicting many children today.]

3. OXYCONTIN (revisited)

From a reader--

People don't become addicted to oxycontin in three days. It just does not happen that fast. Talk to any medical specialist (doctor, nurse, pharmacist) and they will tell you. Yes, after two weeks if you stop cold turkey, you will have withdrawal symptoms. You should NEVER stop a medication like that cold turkey, but that does not mean the medicine is addictive. You should not stop heart medication cold turkey, you should not stop diabetes meds cold turkey, you should not stop steroids cold turkey because you will have side effects if you do. Some can be dangeorus. But you don't hear anyone say they are addicted to heart medicine! Withdrawal symptoms means your body has become accustomed to having the drug in your system, but that is NOT addiction.

You should take great care with ANY medicine and should know the facts, potential side effects, potential problems with other medicines, etc. We must take responsibility for what we put in our bodies. But we should not shy away from pain medicine if it will help us function, particularly if the pain is severe and nothing else helps. Side effects from stopping a medication can be avoided altogether or greatly reduced if you do so according to directions and oxycontin is one you do not stop cold turkey w/o side effects.

As for oxycontin being an abused street drug, yes it is one of many drugs used by junkies. NOT because it is highly addictive but because it is a time-released pill and when you crush it, you get the entire dose at one time. This gets a person very high. It is also extremely dangerous, particularly with the higher dose tablets. The tablets most people are given for pain are the lower dose ones. You only get the higher dose ones when you have something like cancer and only after you work your way up to the higher amounts. When taken properly for pain control, oxycontin is no more addictive than any other pain medicine (i.e. the % are very low). The only reason oxycontin is sought out by street junkies more than some others is the slow-release aspect giving them a bigger high. When taken as directed for pain control, a person doesn't even get a mild buzz from it once your body adapts to the side effects.

If taken properly, pain medicine can be extremely beneficial. Of course if there is a natural remedy that works I would take that before I would take a prescription drug. But sometimes you need prescription medicines. The main thing people need to do is research. Don't put something in your body until you have read, read, read and know all there is to know about it. Some people think just because a doctor writes a prescription, it must be safe and that is a very dangerous mindset. Just as it is dangerous to assume that just because something is sold over the counter, it must be safe. Even water, taken in excess, can kill. Too much water in a short period of time will throw off your electrolytes and cause your brain to swell and you can die.

It frustrates us when the medical community poo-pahs natural remedies, esp. when we know they work. But there are people in the natural healing arena that can be just as close-minded by only accepting natural remedies and refusing to even consider prescription meds. For me, I take natural remedies 99% of the time, but there is that 1% I take that isn't.

I don't think anyone should take opiates lightly, but I also don't think they should be scared out of taking them because there are people that use them on the street to get high. There are people who use pseudoephedrine to make crystal meth, but that doesn't mean people with a runny nose shouldn't take a decongestant. There are people who sniff glue to get high, but that doesn't mean we shouldn't be allowed to use glue. It's all in using it for its intended purpose correctly.

It is hard enough to have a disease people make fun of and disbelieve. We shouldn't also have to deal with the stigma of being a "drug addict" when we take pain medicine. People who take insulin for diabetes aren't bad-mouthed. People who take heart medicine or anti-seizures meds aren't made to feel bad for it. Why do so many sit in judgment of those who must take pain medicine?

If you find yourself taking more medicine than prescribed, if you find yourself doing whatever it takes to get more and more drugs (stealing your doctor's prescription pad, buying them illegally over the internet, stealing them from people's medicine cabinets, seeing more than one doctor to get more meds), then you have a problem and should seek help. But if you are taking the medicine as prescribed to control severe pain you cannot control with anything else, then don't let others make you feel guilty for doing so. And don't let others scare you into avoiding them.

4. NATIONAL FIBROMYALGIA ASSOCIATION

From a reader--

"Could you let your readers know about the National Fibromyalgia Association whose web site is http://www.fmaware.org. They should read this and become aware of what this disease is all about. I get so worried when people start going to Centers like mentioned in your last email note. Like CFS, Fibro has no cure. And by just reading this official web site and seeing a doctor--especially a immune specialist, would do all with this disease a lot better than going to these clinics. I know how it feels hoping that these diseases would go away, since I have CFS. But it is worse that a lot of these clinics are out there just to collect money from people who are so desparate to get themselves cured."

5. FIBRO & FATIGUE CENTER (revisited)

From a reader--

"I've started going to a Fibro & Fatigue Center. I went for the second time today for an IV and injection. I was very impressed with Dr. Campo. I've had fibro for 20 years and have been to probably 100 doctors. Dr. Campo knows more about fibromyalgia than anybody I've ever met. He really focused on the endocrine system which I know is one of my big problems. I already started sleeping through the night and started moving my bowels. I really believe their program is going to help me. When I get my tests back in a couple of weeks I'll meet with him again and he'll make some more recommendations. So far I would highly recommend it, also because the patients I've spoken to while there have been helped."

6. LYME DISEASE OR FMS/CFIDS?

From a reader--

"Do you realize the reason that fibromyalgia and cfids are diagnosed is because insurance companies do not want to pay for ongoing treatment for Lyme Disease. I am sure you have never been tested for Lyme and if you have you probably had the standard tests which are almost worthless. I suggest you read up on Lyme Disease because you will see that every symptom you are experiencing is the same as LymeDisease. Does it make sense that fibro/cfids have the same symptoms as Lyme - only in a financial way. There is no treatment for cfids or fibro. Everything you do is out of pocket. If you test positive to Lyme Disease it means your insurance company might have to pick up the bill. I had the cfids/fibro diagnosis for twenty years until a new test showed up the illusive Lyme infection."

[FROM DOMINIE: I have reported on Lyme disease in many of my past newsletters and also on my website at www.fms-help.com - use the SEARCH box to find the info.]

7. SEROQUEL FOR SLEEP

"During my first flare - I went for DAYS without sleep. Nothing worked. Not Ambien, not Tylenol PM, not Melotonin, not Tramadol...NOTHING. Finally, my Dr. put me on Seroquel. The results were immediate. Not only did it help with my mood issues (not bipolar -- but totally out of sorts due to extended sleep loss and severe pain), but it caused me to sleep within 1 hour of taking it. I have been on Seroquel for almost three years now -- down to 150 mg per day, and have only had three sleepless nights. I am also on Cymbalta for depression -- and at one point in time, Buspar for anxiety. Originally I was on Effexor - which I went off of in order to switch to Cymbalta - and I experienced SEVERE withdrawal symptoms...close to seizure levels (slurred speech, severe headaches, shakes, chills, etc.). While my Dr. assures me that it was all within acceptable levels of reaction -- it certainly did not feel like it! In the middle of my second flare now -- and I've turned to Ultram extended release. Ultram did nothing to help my pain the first time around -- but I am having fantastic results so far. Normally I've had to take higher doses of pain medication for any response at all -- but this is NOT the case this time. Hope this helps some of your readers...I've also just started trigger point injections, and I'll let you know if I notice any change/difference at all."

[FROM DOMINIE: Has anyone else tried Seroquel for sleep? Please write me at dombush@bellsouth.net. I use either ambien or lorazepam (generic ativan). The list of things I've tried for sleep are at www.fms-help.com/sleep.htm. My insomnia story is at www.fms-help.com/insomnia.htm.]

8. CHIROPRACTOR TREATING FIBRO

[This article has been removed.]

9. PANIC ATTACKS

From a reader--

"Panic attacks....although Celexa works like magic, I would like to get away from it and use natural remedies. I am considering the oils."

[FROM DOMINIE: I struggled with agoraphobia and panic attacks for 20 years - from age 15-35. Looking back now at age 54, I believe there were emotional, psychological, physical and spiritual forces causing my condition.]

10. CHRISTIANS WITH FIBROMYALGIA

I found 12 Christian fibromyalgia support groups listed on Yahoo--

http://groups.yahoo.com/search?query=christians+with+fibromyalgia.

[FROM DOMINIE: What a comfort to know there are others who experience the things we do! Maybe one of these groups will be a blessing in your life as you deal with fibro.]

Til next time,

Dominie Soo Bush

Check out these links on my site--

www.fms-help.com - my FMS/CFIDS homepage

www.fms-help.com/fibro.htm - my fibromyalgia story

www.fms-help.com/fatigue.htm - my chronic fatigue story

www.fms-help.com/insomnia.htm - my insomnia story

www.fms-help.com/what.htm - list of things that help me

http://dom.younglivingworld.com - order free report about essential oils

email dombush@bellsouth.net - request my new oils newsletter

www.fms-help.com/tips.htm - 100 tips for coping with fibromyalgia & insomnia

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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.