Letters From Our Readers - Comments & Suggestions 06-18-08

I wish some of the people who have energy to write detailed, and sometimes angry, posts on the name change issues would also regularly contribute on other issues.

There are lots of serious issues facing the community, e.g., all the hype about Graded Exercise Therapy (GET) and the problems it can cause including difficulties getting adequate support and disability payments; delayed diagnosis; lack of interest and investment from drug companies; shortage of interested medics; problems with diagnostic criteria including the new criteria that Leonard Jason complained about that the CDC are using; stigmatizing comments that still appear and psychologizing; lack of money being raised for research and other issues; etc.

If the science moves on, hopefully other issues such as those regarding the name will be answered. Too much energy can be spent arguing amongst ourselves. – quayman

Separate Ads from the Clinical Information

I have had CFS for 10 years and appreciate all of the hard work and dedication of so many. However, it seems to me that in the past few years the newsletter has way too many ads for medications (vitamins, natural herbs and many more). I personally went through all of my savings and took out loans to keep up with all of the natural meds my doctor recommended. I know that we look to you for information, advice and hope.

I do wish that the ads could be separated from the actual clinical finds and information. – RJ

Following are a few tips for managing daily life shared by other ME/CFS and FM patients:

Tips for Those Who Use a Cane or Walker

This is for those who use a cane or walker, or are thinking about it, because of weak or tired legs or poor balance… I was only 27 when I started having trouble walking, especially long distances, and I was too embarrassed at first to use anything. After a few weeks I gave in and got a cane. After using the cane for a few days, I got a second cane. I needed to use two since both legs were weak and it's hard to support both legs with one cane. I used two canes for several months, but I wanted something that would give me a little more support. The canes were fine around the house or going into a store, but weren't enough that I could go to the mall, for instance.

…I tried one of those rolling walkers and I hated it. They are so clumsy. They do give more support than the canes and I could go to the mall, but try opening doors in a walker. Steps are nearly impossible and it's very difficult to use a walker on grass or anything else besides a floor or smooth pavement. If you're with a group of friends at a restaurant, do you realize how difficult it is to try to get around in a small space in a walker? Then when you sit down at your table, where exactly do you put the stupid thing so that people don't trip over it?

The answer came from a girlfriend with MS, who had an extra pair of forearm canes she let me try. They were perfect. I still use the regular canes sometimes for short distances, but the walker has been donated to Goodwill, and good riddance. I can walk anywhere in almost any shoes and it's not hard on the arms. Many people think they can't use crutches because of wrist or shoulder problems, but if you can't put any weight on a crutch, then you can't put any weight on a cane or a walker either. It's no different in that way.

The difference is that the forearm cane (or crutch) is much more stable than a regular cane because of the forearm cuff. They don't wobble like a cane will if you put any weight on it. The trick to using forearm canes for tired legs or poor balance is to use them just like you would use two regular canes. Right foot, left cane, then left foot and right cane, etc. As the day wears on and my legs get more tired, I can gradually put more weight on the canes as needed.

It really is much, much easier to walk with these canes. They are lightweight and easy to use on steps or going through doors. They also come in many colors, which is pretty cool. At the store, I use the shopping cart for support and the canes stay attached to my arms and are ready to use when I step away from the cart. It's very handy… If, like me, your main problem is leg weakness, then the forearm canes are the best choice by far… – Jackie

Recording My Doctor’s Directions

Since I can never remember even a quarter of the info and directions my doctor has given me at the time of the visit, I bought a digital voice recorder to take with me on my visits. This is going to be a huge help for me, I know. – Kathleen

A "Secret" Laundry Shortcut

Since doing a whole load of laundry is like doing a marathon, I take a change of clothes, which has only been worn once or twice into the shower with me. I will mist them down with the showerhead and then after my shower, I toss them into the dryer with a dryer sheet. Of course this only works if the clothes are not soiled. The jeans are freshened up and look like fresh washed. – Kathleen

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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 condition, illness, 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.