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Letters From Our Readers – Please Help Me! 3-7-07

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Help! I Need to Sleep

…I wish that I could sleep. My insurance company will only pay for so much AmbienR. Nighttime has become a nightmare for me – it is a long night when sleep does not come. I have tried everything. None of the natural rememdies help. I take AmbienR and that helps sometimes. Do you have any suggestions? I just need to sleep. – Marilyn

Note: Your question was timed very well. There’s a comprehensive article on sleep for FM and ME/CFS patients by Dr. Sarah Myhill, MD, in this issue. Her ‘holistic’ protocol is not an easy one to stick to, but hopefully if you are able to do it, you will find some help. To read the article, click here.


Help! My Muscle Strength is Disappearing

I’ve had Fibromyalgia for about 25 years and, for me, it has been primarily a debilitating muscle disease. Only the chiropractors I finally went to knew that my muscle pain was from tight muscles… About five years ago, my general practitioner rather casually told me of how MirapexR, a Parkinson’s disease drug, seems to have helped some patients. It has indeed helped me, and I have been mostly free of pain from Fibromyalgia, though my muscles still do tend to become tight very easily.

However, I’ve never been able to strengthen my muscles much without having trouble with spasms and soreness… Consequently, my muscles have slowly deteriorated over the past 25 years, and at 74 I am very weak muscularly… Why is it that all the references to “muscle pain” in the Fibromyalgia literature that I have read do not mention the fact that it can be tightness of the muscles that causes the pain? Or am I the only one who is watching my muscles, never very strong anyway, slowly disappear? Is it all my fault for not exercising? How can I exercise when my muscles immediately seize up, and get worse if I push them beyond their limit? – Edith

Note: You make a very good point. Fibromyalgia often starts an ongoing cause-and-effect battle between tight muscles, pain, and exercise. FM causes an extreme hyper-sensitivity to pain. When the body senses pain, its natural reaction is to tighten the fascial tissues and muscles in the painful area to protect it from further injury. This tightening causes additional pain, which in turn triggers more tightening. And so the cycle continues. If we attempt to exercise in the midst of this cycle, it only seems to worsen the tightness and pain. As a result, we shy away from exercise, which then causes our muscles to become weak and deconditioned.

So how do we break the cycle? A regular program of myofascial release therapy can be a big help. (One or two sessions won’t do it. It may take several months to undo years of tightening.) Not every massage therapist has this training, so be sure to find one who is certified to practice myofascial release therapy. Also ask the therapist to teach you some very gentle stretching exercises that will help loosen your muscles without causeing them to spasm and tighten more. Then, as the therapy and gentle stretching begin to work, let your therapist gradually guide you into other exercises when your are ready.

The ImmuneSupport.com archive has a good article on myofascial release therapy at http://www.immunesupport.com/library/showarticle.cfm/ID/6527


Help! My Depression is Overwhelming

I have joined this site because I have been very depressed and feel so out of control. I have had so much stress in my life the last few years and have also been diagnosed with two chronic illnesses…Also [several members of my family have died] in the past year. I’ve been trying to get disability for over three years after I had to quit my job…so financially I’m in a bind too. I would appreciate any advice to help me deal with this overwhelming sadness and sense of hopelessness I feel. – SimplySue

Note: With all the physical and emotional traumas you have been through in a relatively short period of time, it is quite understandable that you may have a clinical depression. Multiple traumas and prolonged stress can cause certain neurotransmitters in our bodies (notably serotonin and norepinephrine) to be out of balance, causing depression. It is essential that you be properly evaluated by a mental health professional as soon as possible to determine if you are clinically depressed and, if so, what to do about it. It is likely you will be prescribed an antidepressant medication to bring your brain chemistry back into balance – and counseling (sometimes known as ‘talk therapy’) to help you adjust to the physical and emotional changes you are going through. Most communities in the U.S. have mental health centers that provide services on a sliding fee scale, based on your income.

You might also find it helpful to connect with others through online chat rooms or message boards. You might take part in ProHealth’s Depression Message Board, for example. There, others going through similar experiences can share what is helping them and can give you encouragement when you’re feeling down.


Help! I Need More Energy

I was diagnosed with FM 20 years ago, but recently developed ME/CFS in April of 2006. It has been a nightmare for me ever since. I’ve lost over 40 lbs, developing food allergies, extreme sensitivity to cold, extreme pain, a huge drop in stamina, and so many other things. I work because I carry the health insurance for my husband and me, and we couldn’t survive without it… But that’s all I do now is work. Once I go home, I’m done for the day…

I don’t want to seem complaining or whining, as I know many are so much worse off than I. But please can you tell me, is there anything, anywhere that can help give me a little more strength and stamina? My doctor just doesn’t know what else to do. I’m on DuragesicR, VicodinR, ProvigilR, TopamaxR, and (for restless legs syndrome) KlonopinR, I take my vitamins and do my stretches. There has to be something somewhere. Thank you for listening. – Nona

Note: As I’m sure you’re well aware, fatigue is a primary symptom of both FM and ME/CFS, so it’s an ongoing problem for most of us. You’re already taking Provigil, which studies have shown to improve energy in FM patients. Try talking to your doctor about the medications you are taking to see if any of them could have side effects that are increasing your fatigue level. If so, ask if you could switch to another medication that might have fewer side effects. You might also want to ask your doctor about switching your restless legs syndrome (RLS) medication from Klonopin, which can cause daytime sleepiness, to Mirapex. Mirapex (pramipexole) is a ‘dopamine agonist’ used to treat Parkinson’s disease that is also FDA approved for the treatment of RLS. Recent encouraging studies have shown Mirapex to be very effective in treating Fibromyalgia – an added benefit.

Please note: This information has not been evaluated by the FDA, and is not meant to diagnose, prevent, treat or cure any condition, illness, or disease. Never make any change in your health support regimen without first researching and discussing it in collaboration with your professional healthcare team.

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