Expert: Suzan Jackson - 9/23/2009

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:

http://www.pediatricnetwork.org/medical/OI/johnshopkins.htm

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:

http://www.cfids.org/about-cfids/treatment.asp

http://www.cfstreatment.info/

http://www.aboutmecfs.org/HeadPgs/TrtIntro.aspx

This last one is especially good and has many suggestions for various symptoms.

I hope that helps.  Good luck and I hope your improvement continues!

Sue Jackson

www.livewithcfs.blogspot.com