October 2008
Hello to everyone!
As the cold weather starts to occur more frequently, I find myself pulling out items such as heating pads, microfleece blankets, and socks. I even turned on my light box the other day. I hope everyone is finding comfortable ways to deal with the change in the weather.
The fibromyalgia conference in Portland was very enjoyable. There was some excellent information, particularly on the newest research. At some point, recordings from the conference and other information that was given is to be posted on www.fibrofolksor.org
The CFIDS Association was kind enough to send me some very detailed information on CFIDS and exercise. Exercise is important for all of us, and exercise intolerance is a component of both conditions, but it is more predominant with CFIDS. The studies and other articles they sent to me will be put in a binder and become part of the resource materials for our group. If anyone with CFIDS is starting physical therapy or would just like to learn more about CFIDS and exercise, please contact me and we’ll work out a way to get you the information you need.
Our group now has an official website! It can be found at http://www.lanecountycfsfibro.synthasite.com . This is very much a work-in-progress, so please check back. The previous 2 months of newsletters and other group announcements will be posted on the web. There will be no meeting in December but we will be back on schedule for January.
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Dealing with medicinal side effects
Adapted from Dr. James Morris’ talk at the Portland Fibromyalgia conference.
Most people with fibromyalgia and CFIDS have atypical reactions to medicine. They may get strange side effects. Some people are sensitive to a very small amount of medicine, while others need extremely high doses to see any effect. Oftentimes people have to be on multiple medications and have multiple health conditions, which can make it even more complicated. Side effects are one of the major reasons people are hesitant to take medicines, but a good medication regime can significantly improve quality of life, so it’s worth knowing some tips for dealing with side effects.
Some things to keep in mind when starting a medicine:
Start low, go slow. If you tend to be sensitive to medicine, or if a medicine is causing side effects, starting at half or even a quarter of the typical dose can be helpful. For example, amitriptyline, a commonly prescribed medication typically starts at 10 mg. People who are sensitive to it may need to start at 5 or even 2.5 if they are extremely sensitive. Titrate up slowly, especially if you are dealing with adverse side effects.
Don’t rely on your memory! Use a pill minder and a symptoms journal to keep track of what you have taken and when and what effects it had.
Ask for help with side effects. Oftentimes dosage can be adjusted or a medicine can be given to help with side effects while you are adjusting to the medicine. For example, anti-emetics (i.e. Phenegran, Zofran) and antihistimines (Benadryl, Vistaril) can help with nausea and itching that is common with anti-depressants and opiates.
Modify your routine. Switching the time of day a medicine is taken or whether or not you take it with food can sometimes make a big difference in your ability to tolerate it.
Make sure to check on medicinal interactions. Antacids often decrease absorption of a medicine, where other medicines can increase it. For example, Lyrica and Neurontin are much less effective if taken within 2-3 hours of an antacid. This is true even with herbs and supplements. St. John’s Wort can potentially cause severe problems if taken with an SSRI. Calcium and magnesium act much the same way as an antacid with Lyrica and Neurontin.
Be patient. If you can at all tolerate the side effects, most medicinal side effects are short-term. For example, a common one that people say they cannot take due to daytime fatigue is the tricyclic family, but the daytime fatigue from the tricyclics usually drastically decreases within a few weeks. It also takes an average of 2-6 weeks to see effects, possibly more if you are having to start at an extremely low dose or titrate up very slowly. And side effects may be a sign that the medicine is in fact working.
Don’t give up! Like most treatments, medicines take trial and error to see what is going to be most effective for you.
Chronic Myofascial Pain
There is significant overlap between chronic myofascial pain (CMP) and fibromyalgia. Although it hasn’t been studied widely, it is likely that it is a common factor for pain with CFIDS as well. Most people with chronic pain will have at least some myofascial pain.
Myofascial pain, pain in the fascial area of a muscle, is probably the most common cause of musculoskeletal pain. Unlike fibromyalgia pain which is neuroendocrine based, myofascial pain is actually in the muscles. The white, translucent covering you sometimes see on a chicken breast under the skin is fascia. Most people will have active trigger points at various times in their life due to accident, illness, or other stressors (too much time at a desk, pregnancy, etc.). These do not usually become chronic, especially if they are dealt with. When you have multiple active trigger points, you have chronic myofascial pain.
It is very difficult to find a knowledgeable medical professional to deal with CMP. Many doctors do not even know the difference between trigger points (CMP) and tender points (FM). At this point, evidence of widespread active trigger points and other symptoms is the diagnostic criteria. There has been little study into potential misdiagnosis of CMP as FM, but some evidence suggests it could be substantial. In Devin Starlanyl's book (Fibromyalgia and Chronic Myofascial Pain Syndrome: A Survivor's Guide, 2nd Edition) she quotes a study where out of 96 patients diagnosed with fibromyalgia, 74% were shown to have CMP only. Among the patients who did have FM in the study, only 28% had FM by itself- the rest had both. Most FM patients will also have CMP, but evidence is that it is not the other way around.
The distinction is not merely semantics. From the same book:
"Fibromyalgia is a chronic illness that can be controlled. Chronic myofascial pain is an illness that is potentially curable, unless there is a fixed, uncorrectable underlying cause. The focus of treatment for both conditions is to restore more normal functioning with minimized pain.
Some practical differences:
1. Restricted motion (ed: different from morning stiffness) is not a part of FM. Generalized fatigue is, but not the specific muscle weakness that is caused by TrP's
2. With CMP, there is no pain in the areas of the muscle that do not have TrP's or their referring patterns, unless FM or something else is causing generalized pain.
3. Disturbed non-restful sleep in found in both conditions due to different causes.
4. If you have only FM, you are not going to find hard lumps and bumps and ropy bands in your muscles. Those are part of the TrP's that characterize CMP.
5. You are not going to find a generalized hypersensitivity to pain and/or allodynia (feeling pain from non-painful stimulus) in CMP. That is characteristic of FM. If you have both symptoms, you may have both conditions."
FM pain is “I hurt all over”. CMP is “I hurt right here” (and here, and here! CMP does not mean you have only one location for your pain- you may have multiple locations, but you can identify those locations). If you are saying “I hurt all over, but especially right here”, then that is a good sign you may have both.
Pain and Fatigue? Check your sinuses!
Evidence is accumulating that chronic sinusitis is a potential causative and common perpetuating factor of CFIDS and FM. It has been recognized for a while as one of the infections that can be a precursor to the development of CFIDS, but now more information is being released which shows it can have a direct impact on the severity of CFIDS and FM. http://www.sciencedaily.com/releases/2008/09/080922090751.htm has a collection of studies that show the link between chronic sinusitis and widespread body pain and fatigue, the most recent one being a Georgetown University Medical Center study released 9/28/2008 showing that patients with chronic sinusitis who suffer from widespread body pain and severe fatigue who undergo sinus surgery often have a dramatic improvement in symptoms, sometimes even a return to a normal degree of functioning. If you have frequent sinus infections, nasal congestion, post-nasal drip, head and/or face pain, and other symptoms that has lasted for 12 weeks or reoccurs frequently, discuss the possibility of chronic sinusitis with your doctor. Unlike acute sinusitis, chronic sinusitis problems do not cause a fever. Milder cases can be treated with saline nasal rinses, over-the-counter or prescription decongestants and allergy medications, while more severe cases may need antibiotics, steroid nasal sprays, oral prednisone, or surgery. Since sinus surgery is relatively minor and the impact of chronic sinusitis can be quite severe, if you have not responded to other treatments, discuss the possibility of referral to an ear, nose and throat specialist with your doctor.
