Letters From Our Readers – Q&A Session 12-12-07

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Memory Problems?

Q: Is there anyone else out there coping with this memory thing? My psychologist did a test which alarmed her so much she got her boss to check it… They sent me to the local memory clinic for help. They did a test and said yes, my memory was a little bit on the poor side of what it should be. The doctor turned to my husband (for, as usual, people with ME/CFS/FM are invisible) and said, “It’s not Alzheimer’s. If it gets worse in six months we will do more tests.” As I have had FM for 17 years, I know my memory problem has gotten worse. I don’t know the faces of people I should; I forget where I am; I forget what I am saying. – T

A: Problems with memory and concentration are quite common with both ME/CFS and FM. Brain-imaging studies have shown decreased blood flow to the brain for both illnesses, which may be a contributing factor. While there is no simple answer to the cognitive functioning problems, there are a few things you can do to increase blood flow and oxygen to your brain, which may bring you some improvement.

  • Exercise – Any movement or exercise you are able to do will increase blood flow and oxygen to your brain. According to an Ohio State University study, exercising to music will double its effectiveness in improving mental clarity.
  • Sleep – Since getting good restorative sleep is critical for good brain function, it’s not surprising that sleep is a major problem for people with FM. Read “Chronic Fatigue Syndrome & Fibromyalgia: The Brain/Sleep Connection” to learn more about this.
  • Breathe – Breathing properly is essential to providing enough oxygen for the brain. People with FM have a tendency to hold their breath or take small, rapid breaths from their chests rather than slow deep abdominal breaths. This can contribute to cognitive problems and to pain. Read Karen Lee Richards’ article “The Importance of Breathing Properly” to learn how to improve your breathing.
  • Nutrition – Recent research suggests that certain nutrients may help improve cognitive functioning. Try to eat a diet that is rich in iron, zinc, B vitamins, omega-3 fatty acids, antioxidants.
  • Supplements – Supplements that some have found helpful in reducing cognitive problems include Coenzyme Q10, Ginko Biloba, and NADH.
  • Check Medications – Some medications may make your memory and concentration worse. Check with your doctor or pharmacist if you suspect one or more of your medications may be making your problem worse.

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    Non-drug Pain Relief?

    Q: I am always seeing the latest treatments with drugs on the site. I can’t take prescription drugs on a daily basis for more than five to seven days without my liver inflaming and making me very sick. I have extreme chemical sensitivity due to too many prescription drugs in the first four-and-a-half years after my initial diagnosis of FM/ME-CFIDS! The doctors had me on so many pills in the beginning and never performed a single liver function test. Hence, my liver is now unable to process a daily pill anymore.

    I would so like to see more homeopathic and holistic alternatives discussed. I know that ProHealth offers a wide range of holistic supplements but I’d like to hear more from the doctors on the topic of patients with chemical sensitivity who can’t get all excited whenever a new drug is announced.

    A major problem is pain. If you can’t take the pain meds, you have to rely on heat, massage, water therapy, and that sometimes is NOT enough. What more can people who can’t take the drugs do? – Gabriela

    A: A good resource for alternative treatments for FM and ME/CFS is the Fibromyalgia Coalition International: http://www.fibrocoalition.org/index.php. You can read the encouraging story of its founder at “Yvonne Keeny – Turning ‘Cope’ to ‘Hope’ for Thousands of FM/ME/CFS Patients.”

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    Effects of Fluoride?

    Q: I live in Queensland in Australia and was diagnosed with CFS/FM and hypothyroidism a number of years ago. I am classified as totally and permanently disabled. Our state government has just decided to introduce fluoride into our water system over the next 18 months. There has been a great deal of debate, both informed and uninformed. I would be interested in any discussions/feedback/balanced research material dealing with the effects, if any, of fluoride on CFS/FM and hypothyroidism. – G

    A: An excellent source of balanced information is a Web site called “The Fluoride Debate” (http://www.fluoridedebate.com), where both sides of the issue are presented and references given. A total of 43 fluoride-related questions are extensively discussed. In the diseases section, 16 questions address a variety of illnesses. Of particular interest for CFS/FM and hypothyroid patients are questions that deal with the effect on the immune system, neurological impact, and thyroid problems.

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    How to Find a Good Doctor?

    Q: I am unable to find a good doctor where I live in upstate New York. I have had Fibro and Chronic Fatigue Syndrome since the late 80’s. I was finally diagnosed in 1991. Can you please help me find a good doctor? I have Medicaid, Medicare and Worker’s Comp. – N

    A: Here are a number of good doctors listings – none guaranteed to be complete or up to date, and all a bit different:

  • The Co-Cure CFS & FM Good Doctors list. It’s not always up to date but may work for you. There’s a link to it at http://www.immunesupport.com/community/referral
  • Devin Starlanyl’s site also offers a list of care providers either specialized or willing to work with FM and myofascial pain patients (http://www.sover.net/~devstar/provider.htm)
  • The New York Support Network site invites users to e-mail them for info on CFS & FM support groups in the state (http://nysn.org).
  • You should definitely check our message boards, because recently patients have started a long message string on good doctors. You can also post your request there for a good doctor in your area, or ask about a specific doctor – and the more readers who contribute, the better.

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    Note: This information has not been evaluated by the FDA. It is generic and is not meant to prevent, diagnose, mitigate, treat, or cure any illness, condition, or disease. It is very important that you make no change in your personal healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.