Dominie's FMS/CFIDS Newsletter

For people with FIBROMYALGIA (FMS) and/or CHRONIC FATIGUE IMMUNE DYSFUNCTION SYNDROME (CFIDS), also known as MYALGIC ENCEPHALOMYELITIS (M.E.)

Below are 10 topics (#2 is the longest)....scroll down to see if any are relevant to your own fibro or fatigue situation. - Dominie www.fms-help.com

1. TRAVEL & FMS (revisited)

From a reader--

"I read in your newsletter I received today about how driving a car or in a car can overstimulate us and cause vision problems. I thought it was just me until I read this. I am fine if I am driving a short distance in a very familiar place, but if I drive or ride on a highway that has the little white broken lines in the middle, separating the lanes, (especially at night) or if I am going over 40 miles an hour, it drives me nuts."

From a reader--

"I have a theory on the dizziness when riding in a car and cfs. I discovered aspects to this when I relapsed 2 years ago. Riding in a car that was on the highway made me dizzy and tired. If I drove and it was either raining or dusk to dark, it exhausted me. It dawned on me what was going on. When you're in a full-fledged attack, the brain slows way down because it also doesn't have enough energy. Your cognitive processing slows down. I recognized what was going on due to my work with learning disabled college students, some of whom had expressed similar symptoms to what I was experiencing, only when they were trying to read or take tests. When the world is going by at a speed that's faster than your brain can cognitively process for relative information, you'll either feel dizzy, drunk, or exhaust quickly. While my brain is now processing closer to normal speeds, when I drove out to the Teitlebaum lectures at Stanford this past August, I noticed the difference in my fatigue levels between driving the normal 65-70 mph and when I hit construction or the I95 from NYC to Boston. In the construction zone and on the I95, traffic moved at about 15-30 mph and it actually felt like a welcome break to me. I felt myself relax and recharge."

2. TAKING OPIATES FOR PAIN

Interesting article from a reader about Topic #5 in Dominie's FMS/CFIDS Newsletter - Oct. 11, 2006:

I have a comment about the role of pain medication (particularly opioids). Please read the essay below for further info. I believe opioids are very helpful. People who could really benefit from them may get scared off by "propoganda" about their dangers. I try to do everything possible to use "natural" remedies but there are times when Oxycontin really makes it possible for me to get everyday chores done when the pain level is too much for me to take. A recent study demonstrates that fewer than one percent of pain patients receiving opioids become narcotics abusers.

http://www.painlaw.org/opioids.html

Using Opioids to Control Pain

Dispelling the Myths about Opioids

- Pain patients very rarely become addicted.

- Distinguishing between "addiction" and "tolerance."

- There is no such thing as "too much" pain medication for a patient in pain.

- Careful pain management does not kill.

- Pharmacists often err on the side of caution in filling prescriptions.

- Doctors and Patients Are Unnecessarily Cautious about Using Opioids to Treat Pain

Most people facing a very serious illness fear dying in pain as much as they fear death itself. But 95 percent of pain, including the worst cancer pain, can be controlled. When lesser painkillers fail, morphine and its synthetic cousins (opioids) should be considered.

Patients and American doctors (who should know better) are unreasonably afraid of opioids. This "opiphobia" is not based on fact, but is a product of outmoded knowledge and the War on Drugs. Medical research demonstrates the utility and safety of opioid use for otherwise untreatable pain. Major medical organizations have created policies and standards to advise doctors on the findings and resultant practice guidelines. A recent joint statement by the American Pain Society and the American Academy of Pain Medicine outlines current goals and standards for the use of opioids in pain management.

Despite this activity at the top of the profession, pain management in hospitals, nursing homes and doctors' offices in the United States falls far short of the standard for medical care. Doctors only recently had good pain management training available to them. They are often very reluctant to use opioids effectively, even when a patient is dying. Many never even consider opioids for long-term therapy for non-cancer pain.

Very sick patients are entitled to the best modes of pain control. They, not their doctors, are the best judges of how much pain they feel and whether a particular mode of pain management is working. For chronic pain patients the key is whether the medications make them better able to function in their daily lives than do more frequently dispensed pain medications.

Opioids are not the answer to every pain problem or even every severe pain problem. They are serious and, if abused, dangerous drugs. However, every patient should receive consideration of pain that is not clouded by ignorance or unreasonable fear of particular medications.

Dispelling the Myths about Opioids

Pain patients very rarely become addicted.

An addict is a person who compulsively takes drugs for nonmedicinal purposes. Addicts will continue to seek out the drugs despite bad effects on their ability to function in the community, to hold a job, to care for their families and to maintain social relationships. In contrast, pain patients often take very large amounts of opioids and other medications to improve their function, but do not seek out the drug for its own sake or "crave" the medication. Their ability to work, care for families and live productive lives is improved by their medications.

A recent study demonstrates that fewer than one percent of pain patients receiving opioids become narcotics abusers. No patient in pain should hear that relief is barred because "you will become an addict." No patient in pain should reject opioids out of fear of becoming addicted. Even former and current substance abusers can be treated for severe pain by doctors with experience in the field.

There is a critical difference between "addiction" and "tolerance."

"Tolerance" is a physical event that will always happen when a patient takes opioids. Tolerance begins with even one dose. This physical fact is not linked to harmful effects. It means only that, over time, pain patients can be expected to need higher doses of the medication to obtain the same relief.

A patient who has been receiving opioids for pain over time can tolerate levels that would kill a person who is "opioid naive" (someone who has not built up any tolerance). For this reason it is often said that there is no theoretical upper limit to the amount of opioids than can appropriately be prescribed to control pain. Careful physicians will monitor dosage closely and increase it when necessary as tolerance builds to maintain a good effect on pain control. Moreover, some medications mix opioids and other pain relievers such as aspirin, acetaminophen and other non- steroidal compounds. A patient taking these medications will reach a ceiling dose at some point because the other drugs in the compound are toxic. Some pain relievers, such as Demerol, should not be used for any extended period because of toxicity.

Confusion between "addiction" and "tolerance" is common even among physicians. Identification of patients with substance abuse problems is even more difficult. The best distinction between the two is the patient's ability to function. Pain patients can expect to improve function with optimal dosages of opioids.

"Dependence" is another physical fact. It refers usually to the need to maintain opioid levels in a tolerant individual or experience withdrawal. Both addicts and legitimate pain patients will experience withdrawal if the drug is withdrawn abruptly.

Until a patient achieves pain relief there is no such thing as "too much" morphine or other opioids.

Pain experts agree that there is no "theoretical upper limit" for opioid dosages for pain relief. The upper limit is "what works." It is important not to assume that high dosages or a large number of prescribed pills means that the patient is "an addict." Of course, the doctor must monitor to make sure that the dose is appropriate for that patient.

Morphine and its derivatives do have side effects. The most frequent is constipation. Most side effects can be managed. A doctor may have to try a number of pain medications or combinations of medications to reach the maximum relief with minimum side effects. Patient and doctor need to work together to reach an appropriate dose for the patient.

Careful pain management does not kill.

Pain researchers and informed clinicians now agree that morphine, properly prescribed, does not depress respiration and kill opioid-tolerant patients. Pain is a powerful antagonist to respiratory depression. (Think, for example of how your heart beats faster and you breathe more quickly when you're in serious pain.) The American Pain Society and the American Academy of Pain Management have concluded in a consensus statement that "respiratory depression induced by opioids tends to be a short-lived phenomenon, generally occurs only in the opioid-naive patient, and is antagonized by pain. Therefore, withholding the appropriate use of opioids from a patient who is experiencing pain on the basis of respiratory concerns is unwarranted."

Despite well-documented evidence to the contrary, the fear of respiratory depression and resulting death permeates medical, legal and ethical discussions of pain management. Advocates will have to be educators and should never fall into the trap of accepting misinformation, however well-intentioned.

It is very possible to kill an opioid-naive patient with opioids. The critical factor is the physician's intent and his or her adherence to good precepts of pain management.

Pharmacists often err on the side of caution.

Pharmacists are not trained to understand pain control. They have legal responsibilities under state and federal licensing regimes to refuse to fill prescriptions they believe are not for appropriate medical purposes. They often err on the side of caution and refuse to fill any opioid prescriptions, or do so with exaggerated scrutiny. A nervous, agitated and upset pain patient may look like an "addict" to them.

Recent studies signal the possibility of racial profiling in filling and refusing to fill particular prescriptions. Pharmacies in poor inner-city neighborhoods may refuse to carry opioids because they fear robbery.

Pharmacists' legitimate concerns too often translate into hardship for legitimate pain patients. Patients should not allow pharmacists to intimidate them when they submit valid prescriptions to control their pain. Asking the doctor to intervene should change the pharmacist's approach.

If a pharmacist challenges a prescription, the patient should ask the pharmacist to call the prescribing doctor immediately. Patients should also discuss the problem directly with their doctors.

Doctors who have legitimate pain practices should make efforts to work closely with pharmacies. They should also, with the patient's consent, be willing to put a note on the prescription showing diagnosis.

Response from reader #1:

I have been very lucky. I've been on the morphine for two, maybe three
years, and I have yet to increase the dosage. But I agree with you. Every
single thing we put in our bodies goes through our kidneys and liver and we
need to understand and respect that. I will try the stuff you recommend
and hopefully I can either decrease or stop the pain meds. If not, I do
take herbs to cleanse my liver.

Sometimes people think the pain returns 500x times worse than it was
because their pain was being controlled and now suddenly it isn't. When
you have the pain every day, you kinda get used to it, but if it's better
and then comes back, it seems much worse. Plus, what we don't think about
is this - if you weren't on the meds, the pain might have gotten worse
anyway. You don't realize it's progressing because it's being controlled.

Anyway, I believe in natural medicine and morphine is natural. I know for
me, if it weren't for morphine, I would have stepped in front of a train.
The pain is absolutely intolerable and I am not a sissy.

One reason I know I'm not addicted is that people who are addicted can't
wait for their next "fix." There are times when I'm having a "better" day
that the time comes and goes for me to take my med and I don't want or need
it. An addict would be counting the minutes. Also, addicts do whatever
they can to get more and more drugs, going to more than one doctor,
whatever. I don't do that.

I am glad to see and read thoughts on both sides of the issue. I know for
me, pain medicine has been a godsend. I know I am not addicted and I have
gone off the medicine before with no ill effects (other than the pain
returned full force). What does bother me are those that sit in judgment
of me for taking the medicine. It is bad enough to have a disease most
people don't believe in. It only makes it that much worse when doctors or
others also think you're a drug addict.

My mother has cancer and she is in terrible pain. Her doctor is willing to
treat her pain, but her insurance company puts up brick walls everywhere
she turns. It is inhumane.

I am looking forward to trying the essential oil you mentioned. It would be
fantastic if it helps with the pain. The less pain meds I have to take,
the happier I am. I don't "like" taking opiates, but I also no longer feel
guilty for it.

Response from reader #2:

My cousin had to go to a rehab center to get off his drugs. It cost him $20,000.

He said the place was loaded with doctors that were addicted to their
own pain meds. The problem is your body becomes used to the drug and you depend on
them to be pain free. Those statistics of 99% do not get addicted is
so wrong. They should visit a rehab center.

Definition of Addiction: Long-term use of some medications can lead to dependency,

and severe reactions may occur if the medications are withdrawn suddenly. Narcotics, tranquilizers, and

barbiturates must be taken very carefully to prevent addiction.

"Ultram / tramadol. I had severe reactions also. I was so high while taking it. My children said I looked crazed. I hallucinated. Had chills, fever and was very dizzy. I just thought I would let you know how it affected me too."

"I read, with great interest, the warning that one of your readers submitted on the pain medication Ultram/Tramadol.

About a year ago, I went off of this same medication because I felt it "stopped working for me". I had been on it for a number of years, but no matter what dosage I took, it didn't seem to alleviate the pain any longer.

When my rheumatologist prescribed the medication, he did not tell me that it was addictive or habit-forming and this is something that I know he would have told me. He always explains the pros and cons of any medications he wants to put me on and I have a say as to whether or not I want to try it. I get a second consultation with the pharmacist when I pick up the medication and to the best of my knowledge, he did not give me that warning either.

The instructions for taking the medication was to take 1 or 2 tablets and I could take it once or twice a day. On good days, I didn't take it all. In any case, I never experienced any withdrawal symptoms and that includes when I went off of it entirely.

Unfortunately the next step for me, was to go on a stronger pain medication and this one is addictive, so I am careful to follow the prescribed dosage.

I totally understand your Reader's description of what it's like to have withdrawal symptoms from medication drugs. It is a horrible experience. Recently, I ran out of my RX for Clonazepam [Klonopin] and after four days of not having it in my system, I thought I was going to go crazy. I was so thankful that it arrived the next day through Mail Order. I watch my prescription refills more closely now!

I am not a doctor and I am in no position to judge others, but I hate to see a panic started for those on Ultram/Tramadol. I'm sure there are a lot of people on it. My suggestion is to talk to your doctor or pharmacist and discuss any concerns you have. There could be a small number of people who react to the medication differently than others; or, perhaps, I could be in the small group of people who had no adverse reaction. But then it also is not uncommon for a drug to "stop working" for me after I've been on it for awhile, creating a challenge for the doctors! Anyway, I just wanted to share my experience and add the reminder that because everyone is different, not all drugs work the same for everyone."

[FROM DOMINIE: I know how horrible it is to have unrelenting FMS pain! I was diagnosed in 1982 and suffered for 14 years. I was drugged much of the time and felt like a zombie. In 1996 I got a computer and began researching and finding natural things that helped me. I am 98% pain free. If you need suggestions, write me at dombush@bellsouth.net or search my site at www.fms-help.com. See my 100 Tips for Coping with Fibromyalgia and Insomnia at www.fms-help.com/tips.htm. My newsletters over the years have also contained many helpful suggestions I received from readers. The newsletters are archived on my site.]

9. ESSENTIAL OILS

I "discovered" therapeutic essential oils recently and love what they are doing for me! If you're interested in learning about the oils and to see what all the excitement is about, order a free report from my site at http://dom.younglivingworld.com. The order box is in the middle of the page.

10. FMS-HELP.COM

From a reader--

"I just wanted to let you know how much I appreciate the newsletter that you send out for FM and CFS. I left in the middle of church tonight, dizzy and exhausted. I came home and decided to look at your newsletter and site because it always helps by giving encouragement and information. I wanted to let you know that by sharing your personal experiences, you are always opening yourself up to criticism. HOWEVER… you are one of the few people on the web that is so honest and up front about what has worked for you and what hasn’t worked. No, we aren’t all the same. But, you have given me ideas and encouragement when I didn’t know where else to turn. FM and CFS are so frustrating because people don’t understand and we can’t just go pop a pill or have surgery. It’s so much more than that. At least we can read some ideas and glean from your many years of experience."

[FROM DOMINIE: If you haven't been to my homepage www.fms-help.com recently, you are missing some great info! My site has been online since 1996 and continues to grow and improve. I have been asked to write a book, but FMS/CFIDS research is constantly changing--big news one year is rapidly replaced by new theories that are more plausible. So I think the internet is the best way to keep the info current. I learn so much from my wonderful readers, and I enjoy sharing this info with others.....you know the saying: "Telephone, Telegraph, Tell Dominie!" Until a cure is found, we are all in this situation together. My story is at www.fms-help.com/fibro.htm.]

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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.