back on my feet (literally)

Hello readers. A lot has happened since I last posted. In April my father become very sick and so I went to be with my family. What I thought was going to be a short trip ended up being a three week stay. My dad passed away, and needless to say, it was an extremely difficult and stressful time.

Ironically, the first week out there was the best I have felt physically in a very long time. There is a reason for it: I had just started taking buffered salt tablets (Thermotabs) as recommended by Dr. Peter Rowe, a chronic fatigue specialist at Johns Hopkins University who treats orthostatic intolerance. For a long time I have had low blood pressure but was never told it was dangerously low or that anything needed to be done about it. WRONG!

It is shown in ME/CFS that many patients have reduced blood volume and low blood pressure. In fact, Dr. Teitelbaum, another ME/CFS specialist, mentions that ME/CFS patients are frequently dehydrated: "this occurs for several reasons, including underactive adrenal function and a decrease in antidiuretic hormone ("anti-peeing hormone")". This completes fits my own experience. I have some days where I am constantly needing to urinate, up to 15 times a day (I actually kept track with my own pee log). It explains why blood volume is lower, since if you're not retaining fluids there's nowhere for your body to get the water it uses to make blood. Essentially its a resources issue, no raw material to make the blood with.

When I first found out some years ago that I have low blood pressure I started adding more salt to my diet, sprinkling it on food whenever the opportunity arose. But it turns out this was not nearly enough, especially since I follow a diet that avoids processed foods, and processed foods are most people's primary source of salt. The great news is that since starting taking the salt tablets I have had a SIGNIFICANT reduction in symptoms, peeing a lot less frequently and feeling MUCH better when being on my feet. My symptoms were so bad before that I had even considered the possibility of getting a wheelchair when going for long shopping trips or other times when I would be upright for long periods.

Just to illustrate, a typical bookstore outing (before) would go like this: arrive, browse for 5 or 10 minutes, start feeling uncomfortable, look for a place to sit down. If no "good" chair (one with a back) was available, I would have to leave. Sitting on a bench with no back is very uncomfortable. But now suddenly I can stand again and feel okay, and for relatively long periods of time. An amazing change.

Although this is terrific, it's important to note that orthostatic intolerance is only one of many problems faced by those with ME/CFS. There are four or five primary areas of symptomatology that need to be addressed: sleep, pain, cognitive dysfunction, OI, and HPA (hypothalamic-pituitary-adrenal axis) malfunction. Dr. David S. Bell, a famous doctor of pediatric ME/CFS, wrote recently in his Lyndonville Newsletter about a women who considered herself 'recovered' from the illness (bold emphasis mine):

ME/CFS Essay: Fatigue with and without Orthostatic Intolerance
Over the past twenty five years I have had the opportunity to see lots of things through CFS colored glasses. For example there are all these case definitions and diagnostic criteria. Yet as the years pass I see patients who go from one set of criteria to another. Presently I am writing the twenty-five year follow-up paper. And some remarkable things have emerged. They are so remarkable, non-clinicians will not believe them. Here is an example.

Mary got sick in 1985 with a typical mono-like illness and missed two years of school. She experienced the usual discrimination and physician abuse, except (I hope) in my office. She was for real. Strong, gutsy kid who kept up her studies despite not going to class. Her SAT scores were good and she went to college, part time at first, then almost full time and graduated. Fell in love, got married, had kids, had a job. She did great.

In 1995 we published a "Thirteen year follow-up" and she was one of the recovered patients. 80% of the kids followed up at 13 years were doing well, and it is one of the reasons there has been the general perception that kids are more likely to recover. I had made a mistake and did not realize what I know now. So we do the 25 year follow up questionnaire.

The first question on the SF-36 is "how do you rate your health?" excellent/very good/good/fair/poor are the response choices. Mary put down Very good. Then we look at her daily symptoms. Severe headaches. Moderate muscle and joint pain, doctors don't know what it is. Irritable bowel syndrome. Sleep is terrible. Memory and concentration is poor. Severe fatigue. When you look at all the questionnaire scores she is as bad as she was twenty five years ago. Except for one questionnaire.

Her activity is 16 hours a day. She can function a whole day, so she can work and raise a family. At the beginning of her illness her activity was only three hours a day - that was why she could not attend school. The only thing that has improved is the orthostatic intolerance - the ability to function in the upright position. And that is why she feels that she has recovered. The daily somatic symptoms are an annoyance which she copes with very well; ignores in fact. It is ironic that her fatigue is severe, but without orthostatic intolerance, so she considers herself to be "recovered.

But she has not recovered. She is still ill with all the symptoms of CFS except orthostatic intolerance. So when people say whether or not they are better, usually they refer only to that one central symptom that determines if you can function like a normal person. The degree of recovery is, in fact, merely the improvement of this one central symptom.

So, I feel highly encouraged by the improvement seen with these salt tablets. Being able to be on my feet again is a real breakthrough. I think I will be able to function much more than I have in a long time. I am already looking at taking classes, starting an ultimate frisbee league, and doing many other activities that I have not been able to do. Still, I know a lot remains to getting truly well, as evidenced by Dr. Bell's "recovered" patient story above. Addressing sleep will perhaps be the next big hurdle to cross, with my doctor wanting me to do a sleep study but me resisting due to the high cost. We shall see. 'Til next time.