Dear Powkat27 -
As you've discovered yourself, an intolerance to exercise is one of the primary identifying characteristics of CFS, and you must be very, very careful with any kind of exercise to avoid triggering a flare-up or crash.
Take a look at my recent response to another person with CFS who asked about exercise (I posted two respoonses, with some links to more information):
Generally, in order to do any kind of exercise, you need to figure out where your limits are and stay within those limits. From what you say, it sounds as though you probably have fairly severe CFS, so your limit may be only 5 minutes of very slow walking or 10 minutes of gentle yoga (or maybe even less at first). It takes some trial and error, but try to figure out how much you can do WITHOUT triggering a crash. Of course, this will vary depending on how you feel each day and what other activities you do. For someone with CFS, all activity counts toward that exercise intolerance, even things like making dinner or just sitting up and talking with a friend.
I've found that yoga is well-tolerated. Even on a bad day, I can do 5-10 minutes of sitting and lying down yoga stretches. It may not seem like much, but it helps to improve your blood circulation and build muscle, both of which can help you feel better.
As for losing weight, recognize that may not be under your control right now. CFS causes severe dysfunction in the endocrine system, which controls all sorts of hormones in your body, including those that regulate hunger and energy. Many people with CFS gain weight because of this.
Besides considering very mild exercise as I explained above, also consider your diet. Eating a healthy diet can also improve some of your CFS symptoms. This is a challenge for those of us with CFS, since you may not be able to cook much, but try to follow general guidelines for healthy eating - lots of fruits and vegetables, whole grains, lean protein, with very little saturated fat and refined flour and sugar. Maybe you can enlist the help of a friend or family member to help cook some healthy meals that can be frozen into portions or check the healthy frozen food section at your grocery store.
The best approach for someone with CFS is to work toward improving your CFS symptoms. Anything you can do to improve your CFS overall will help to improve your exercise tolerance and increase your metabolism. I have no idea what you've done in the past, but you may want to consider these areas to improve your symptoms:
1 - Treat sleep dysfunction. When I was first diagnosed, my doctor told me we'd start with treating the sleep dysfunction because improved sleep would help to improve all other symptoms - she was right! Sleep dysfunction in CFS is caused by hormonal imbalances - our endocrine systems don't produce the right hormones at the right times to allow us to get deep, restorative sleep. That alone can cause weight gain (plus make you feel terrible). Here are two excellent articles on treating sleep dysfunction:
These treatments work! My sleep now feels normal, like it did before I had CFS. It can take some trial and error to find the right medications and the right doses, so be patient.
2 - Learn about Orthostatic Intolerance and Treat it. Orthostatic Intolerance (OI) is at the root of many CFS symptoms. People with CFS have lower-than-normal blood volume and have trouble maintaining their blood pressure when upright, resulting in that exhausted, sick feeling. Ingesting lots of salt and fluids can help, as can some medications. Read about it here:
3 - Get Tested and Treated for Infections. People with CFS have dysfunctional immune systems that can't fight off infections that exist in other people without symptoms. Many people with CFS respond well to anti-viral treatment. Your doctor should test you for Lyme disease and its co-infections (which cause symptoms very similar to CFS), as well as a bunch of viral infections, including Epstein-Barr (EBV) and HHV-6. Positive tests indicate that you may benefit from antibitoic or anti-viral therapy. For more information:
4 - Try Low-Dose Naltrexone (LDN). This is a medication that is used in tiny amounts to help normalize immune system function. Anti-viral treatment plus LDN has helped me very much. For more information:
Finally, here's a great overview of CFS treatment options, with lots of good information and links:
I know this was far more information than you asked for, but the only way for people with CFS to be able to exercise more is to treat the underlying illness. Please feel free to visit my blog and/or contact me again if you have any questions about what I've said here.
Good luck to you and hope you have a happy and HEALTHY new year!