Expert: Suzan Jackson - 3/20/2009

Question
Have you tried Dr. Lerner's anti-viral treatment? Viewing his site I did not see how to get it without going there.

I was diagonised with Fybromyalgia about 8 years ago. For two years all I needed was Motrin, then it got worse and they tried me on many meds that did not help, finally a specialist in a far distant treatment center said he gave all his patients Hydrocodone and saw no long term bad effects. So I got on that and am still on it. Without it I could not function. They wanted me to take anti-depressents and tried several on me and they all made me a zombie so I refused to try any more.

My husband occasionally gives me a massage, which helps but he is so busy.
Before it got worse I did Yogi most days and it really helped but now it hurts too much to do them. Do you think I should get some physical therapy? My leg muscles are not right. I can walk with a walker or cane. Since I am 71 would it work?

We are still recovering from hurricane Ike and there is still an enormous amount of work I HAVE to do every day and can find no household help. My husband helps as he can but he works.

I am desparate to keep going but going somewhat downhill and need anythng else that will help.  

Answer
Dear Virginia -

I'm sorry you've been through so much, both with your health and with the hurricane.

I don't have fibromyalgia myself, just Chronic Fatigue Syndrome, but I can point you in the right direction perhaps.

I have used anti-viral treatments for my CFS, and they have helped a little.  My viral loads weren't very high to start with, though.  I do know of others with high viral levels who've tried anti-viral treatment, some with great success and some with little change.  I really don't know anything about using anti-virals for FM.

As you guessed, you can't get anti-viral medications without a prescription from a qualified doctor.  Have you been tested for viruses and other infections yet?  If you test positive, then you might benefit from this type of treatment.  While you're at it, be sure to be tested for Lyme disease and all of its co-infections, as it can cause symptoms almost identical to FM.  Dr. Lerner is only one of many doctors using anti-virals.  Look for a doctor with Infectious Disease expertise or experience with FM in your area.  To find one, try the Good Doctors List at Co-Cure:

http://www.co-cure.org/Good-Doc.htm

You also mentioned that anti-depressants made you groggy.  This means you were probably using much too high doses.  Anti-depressants can be very effective for sleep dysfunction (and some for pain) when used in very small doses at bedtime.  Here is a great article explaining how to choose the right one:

http://www.cfids.org/archives/2001rr/2001-rr3-article01.asp

It's best to start with tiny doses, and it may take some trial and error to find the right medication and the right dose for you.  I know of several people with FM who've benefited from small doses of nortriptyline.  My son and I both take it for CFS sleep dysfunction, and it's been very effective.

You also mention pain medications.  I'm no expert, since pain isn't one of my CFS symptoms, but I have heard that the pain of FM is often pain that originates in the nerves and that pain meds that work on nerve pain are sometimes effective.  Neurontin is one example of this, and there are some brand new meds just recently approved for FM.

I think physical therapy is probably beneficial to ANYONE with chronic pain.

Finally, your last sentences concern me - about all the work you HAVE to do.  Pushing yourself beyond your limits is absolutely the worst thing you can do when you have either CFS or FM.  You'll just keep getting worse and worse if you continue.  The best approach to managing these illnesses is to rest every day and to try to stay within your energy limits.  I know you think you HAVE to do all these things and don't have any help, but take another look and really consider what is essential each day and where else you might find some help - friends, family, neighbors, hiring someone, etc.  Also, no matter how busy you are, take time out each day to rest.  I take a nap EVERY day after lunch, no matter what.  It helps a lot.

Overall, my advice to you is to work closely with your doctor to try various treatments to see what works and to also work on better managing your daily activities and rest.  If your current doctor isn't knowledgeable about FM treatments, then find a new one. I know it's hard to do, but it's well worth it to have a supportive doctor.  

One final source of information - the National Fibromyalgia Association:

http://www.fmaware.org/site/PageServer

Their site also has a doctor-finder, as well as lots of informative articles on treatment.

Good luck - I hope you are able to find some treatments that help you.

Sue Jackson

www.livewithcfs.blogspot.com