Letters From Our Readers - Comments & Suggestions 08-13-08

Thank you to Jackie for the letter on using canes, as well as the ones with forearm cuffs, as support for leg weakness ["Tips for Those Who Use a Cane or Walker.”]

I was diagnosed with CFS and FM 5 years ago and one of my first symptoms (prior to my diagnosis) was an almost complete shutdown of the muscles in my thighs that lasted 18 months. It would come on suddenly - I'd be at my son's preschool and it would hit me, and my legs would be so weak I would be unable to drive home.

I'm thankful for your advice, but it was also reassuring to hear of someone else who has struggled with leg weakness. I thought I was alone. – Jamie

Read Encounters with the Invisible

I have recently read Dorothy Wall's book Encounters with the Invisible, and found it to be very helpful in many ways. I would encourage anyone with FM/CFS/ME to read it.

Thanks for all of the work that is put into the ME/CFS and FM eNewsletters. I find them to be very educational as well as giving those of us with these two illnesses a lot of encouragement in various ways. – Boz

Pregnancy & ME/CFS - Second Thoughts

Re: “A clinician’s guide to the implications of ME/CFS for women during their childbearing years.”

I am writing this with a sleeping baby balanced on my other arm. I am the mother of 8-month-old twins. Despite the fact that I have been struggling with CFS on and off for the past 10 years, I still wanted to start a family and time to do so was running out. When I met my husband 3 years ago it seemed like it all might still be possible. The illness was a major factor in my not really considering children before, whether consciously or not. But I had heard some people felt better after having children and I hoped somehow the jolt to my system would bring things back to normal.

My family doctor, who has been mildly understanding but not incredibly helpful, said some of her patients in similar situations to me did feel better during pregnancy. But when I asked her how they felt after the babies came, she sort of shrugged and said, “Well...” but didn’t feel the need to warn me of anything. I also searched this Web site to see if I could find any articles on CFS and pregnancy, but nothing of any use came up. The only person to offer words of warning was my mother, probably because she is the only person who really appreciates how much I am affected by the 'spells.'

Now I have 2 beautiful daughters. Twins would be a challenge for anyone, but this month I took a terrible dive into fatigue and it is terrifying! I wish someone had warned me or helped me to think through what it would be like to be responsible for another life when you can barely look after yourself; or to consider that the stress of child rearing would make symptoms worse, not better.

Part of the problem for me is the feeling no one really understands what I go through. If they don't consider the problem serious, they wouldn’t feel the need to warn me. [I also have a] feeling of vague embarrassment and slight denial about my health. I am writing during an extremely bad spell, and as other sufferers know, it affects judgment and optimism. But I hope hearing my experience will be useful to others. – Heather

Rate-Your-Doctor Results: Most Wanted Improvements

The results are in from last month’s Question of the Week, “On a scale of 1 to 10, how would you rate your physician overall, considering knowledge, skill, and attitude?” Forty-five percent gave their doctor a high rating (8 to 10); about a third assigned a less favorable rating (5 to 7); and 24% gave a low rating (1 to 4).

Here are some representative answers to the follow-up question, “What qualities or skills, if any, might improve your rating?”

• None. He is curious about new research, is knowledgeable and listens carefully.
• Needs to keep up with drug side effects and also lesser-known illnesses.
• Listening more and asking questions.
• Take more time with me at visits to find out what’s currently going on.
• More knowledge about FM and ME/CFS.
• Learn and prescribe alternative therapies, including nutritional treatments.
• Open mindedness and willingness to check on other areas, read up on new studies.

Overall, the top three qualities most people say they want in their doctor is someone who listens well, spends enough time with them, and is knowledgeable about their illness.

A Scientific Reason Why ‘We Can’t Drink?

RE: “Why ‘We’ Can’t Drink – My One and Only Hangover”

There is a scientific reason for alcohol problems with FM/CFS. When the liver metabolizes alcohol, it first uses enzymes to break down the alcohol into acetyl acid. That is a fairly easy step, and the acetyl acid isn't particularly toxic. The second step is to break down the acetyl acid into acetaldehyde, again not too difficult. The final product is to break down acetaldehydes into non-toxic products. This is where the problem occurs.

Most people store a small amount of the enzyme needed to break down the acetaldehydes, and make it without problem when needed to break down the alcohol to its final products. However, the acetaldehyde accumulates when there isn't enough enzyme (or you drink too much), and then you get a nasty hangover (or you die, if it's bad enough).

Coincidentally, the waste products of a candida (yeast) infection in your intestines include acetaldehydes. Since most people with FM/CFS have a candida infection in their intestines (I certainly did), the liver is overwhelmed with acetaldehydes 24/7, and it has no enzymes left to process alcohol. I wish some scientists would take a closer look at this. - Sandy

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