AboutSuzan Jackson Expertise I have had CFS since March 2002. My 14-year old son and 10-year old son also has CFS. I have a scientific background (chemical engineering) and have read and researched extensively to try to help myself and my sons to improve our symptoms, with some success. I`ve also conferred with some of the top CFS doctors in the U.S. I have a lot of hard-won experience working with school systems to get appropriate support for my sons. This is a very debilitating and isolating illness, and I would be glad to help anyone else who is struggling with CFS themselves or with a family member. You can read about our experiences in learning to live with CFS at my blog: www.livewithcfs.blogspot.com.
Experience Have had CFS/CFIDS since 2002.
Two young sons have CFS/CFIDS.
Organizations CFIDS Association of America
Various listserves that provide up-to-date information on CFS research.
Question Hi,
I've had M.E/CFS for about 4 years; however in the last year or so I've been getting a lot better. Most of the symptoms have gone or at least decreased a lot, and I can manage a lot more. However, I still regularly get fairly bad headaches, and pain in my lower legs. Is there anything you can suggest for these symptoms, preferably without the use of medication?
Thanks very much,
Harriet
Answer Dear Harriet -
First, I'd like to apologize for the long delay in responding to you. I've been in a very bad crash this past week and unable to spend much time at the computer. I wanted to give you a thorough answer.
Congratulations on your improvement!! That's so wonderful.
As for your remaining serious symptoms, you should work with your doctor to try to find out whether there are any other causes behind them. My doctor is always reminding me that just because I have CFS doesn't mean I can't get something else. CFS causes such varied symptoms that it's easy to blame everything on it but any new or worsening symptoms should be thoroughly checked out. Headaches in particular can have many causes. Your doctor should be able to help you get to the bottom of it.
As for the leg pain, is it pain in the muscles, in the joints, or more of a flu-like achiness? The flu-like achiness is common in CFS, but if you have joint pain, you should again work with your doctor to find out if there are other causes. In particular, be sure to get tested for Lyme disease if you have joint pain. Rheumatoid arthritis (another immune system disorder) can also cause joint pain, as can fibromyalgia.
If the leg pain seems like CFS achiness and you've ruled out other causes, consider treatment and lifestyle/diet changes to treat Orthostatic Intolerance (OI). This is a key part of CFS for most people and is actually behind many CFS symptoms. Here's a great summary on diagnosis and treatment of OI:
You might also consider whether these two symptoms worsen when other CFS symptoms worsen. Do they occur when you've over-exerted and are getting fatigued? If so, that's pretty classic CFS. But if you have severe headaches and/or leg pain when you otherwise feel good, that would indicate the cause is something other than CFS.
If these are "just" CFS symptoms, here are some great resources for treatment ideas:
