Expert: Suzan Jackson - 9/25/2006

Question
My husband was diagnosed with both chronic fatigue and epstein barr last august-since then there has been no help for him and no one has anything to offer except-reasearch the internet. He is weak and tired and cannot rest and SSI says it is not debilitating enough for those benefits.  He aches, he is dizzy and no one has even suggest a course of action for us except--geet use to feeling like ya got pneumonia for the rest of your life and he is only 50.  What cna we do and where can we go?  Is there anything that we can do for him-we have no insurance-local and state government programs we do not qualify for-and he has sleep apnea to boot and is on the wrong machine-(new one costing 6,000.00).  Needless to say my husband is tired of feeling sick and tired and even jsut walking around the local grocery store is becoing a chore for him--i guess my only question would be--WHAT CAN I DO TO HELP MY HUSBAND>>thank you for your time--

Answer
Dear Denise -

I'm sorry that you and your husband are going through such a difficult time.  Chronic Fatigue Syndrome (CFS) can be very debilitating.  I have had CFS for almost five years, and my two sons have it as well.

Although there is no cure or full treatment for CFS (yet), there are some things he can do to improve his current state and his quality of life.  He is also eligible for Social Security disability benefits for CFS.

The most important thing for you and your husband to do is to learn as much as you can about CFS and its treatment.  Many doctors do not have a complete or up-to-date understanding of CFS, so you have to become the experts yourselves and guide his treatment.  In fact, you probably need to find a new doctor, since yours said there's nothing he can do about CFS - this means he clearly doesn't know enough about the disease.  In fact, this makes me wonder whether he even diagnosed your husband correctly.

The best place to start is at the website for the CFIDS Association of America (CAA):

www.cfids.org

This is a patient support organization for CFS.  It is the most complete and accurate source for information on diagnosing and treating CFS.  Even if money is tight, you should become membors of the CAA so that you'll receive its quarterly newsletter which is filled with excellent advice on how to cope with CFS.

You might want to start with the CAA's "Do I Have CFIDS?" page which you can go through on your own or with your doctor's help to make sure the diagnosis of CFS is correct:
http://www.cfids.org/about-cfids/do-i-have-cfids.aspe

Once you're certain your husband has CFS, he can begin to try treatments.

Again, the CAA website is a good place to start:
http://www.cfids.org/resources/newly-diagnosed.asp

One unique characteristic of CFS is that any kind of physical or mental exertion (or emotional stress) makes the symptoms worsen.  This exercise intolerance causes post-exertional crashes, where something like going to the grocery store or taking a short walk would result in feeling much worse an hour or more afterward, lasting for days or weeks.  The best way to learn to live with CFS is to become aware of these patterns and avoid activities that cause crashes.  It sounds very restricting, but if your husband can figure out where his limits are and stay within those limits, he'll feel better most of the time.

There are other treatments as well.  One of the first that most doctors start with is treatment for sleep dysfunction, which is a key symptom of CFS.  The fact that your husband also has sleep apnea makes it even more important to address these problems.  Improving sleep tends to improve all other symptoms.

Another area to learn about is Orthostatic Intolerance (OI), a blood pressure problem that occurs in almost all CFS patients.  Extra salt and fluids can help, and there are many medications that may help as well.  Your husband's dizziness is probably a symptom of OI.  Treatments for OI can significantly improve many CFS symptoms.  In addition to the information at the CAA website on OI, here is an excellent article:
http://www.pediatricnetwork.org/medical/OI/johnshopkins.htm

The CDC also has a newly updated website with lots of good information:

http://www.cdc.gov/cfs/

The CAA website also has information to help your husband apply for and obtain disability benefits for CFS:
http://www.cfids.org/resources/ss-disability.asp

This should help you to get started.  When I was first diagnosed, I found several books on CFS at my local library which were very helpful as well.  Read everything you can and learn as much as you can.  CFS is a very complex illness, with new research constantly improving our understanding of it and how to treat it.  You must become your own advocate because of the lack of understanding in the medical community.

I know this can all be very overwhelming, but please remember that you are not alone.  Please feel free to contact me again, through AllExperts or by e-mailing me, if you have any questions or need more help.

Sue Jackson

jacksonde@comcast.net
www.livewithcfs.blogspot.com