Expert: Suzan Jackson - 7/16/2009

Question
What kinds of medicine do doctors prescribe for CFS patients and for what dose in the USA (and if you know, in the UK as well)(I live in UK)?

I feel exhausted all the time, and I can't get out of the bed, have no energy. I thought it was because of my depression, but my mood has been okay for over a month, and I feel still very tired.

My GP started to prescribe me a Concerta since April - 18mg at first, then 36mg, now 54mg. It does help me, but it's just barely working.

My GP would not increase the dose because he said 54mg is the maximum dose per day(in the UK maybe?). I've had taken antidepressant for about 2 years and it didn't help me much.
If I go to counseling services, people think that I'll be alright if I eat healthily, sleep well and do various activities that I find interesting. They don't seem to understand that the only reason I was barely able to go to that counseling services was my medicine.

It's so frustrating that I cannot get proper health services in this country.
Doctors don't seem to be very qualified here and are too afraid of prescribing controlled drugs - even if the patients genuinely need them for medical reasons.

Help me out, please..

Answer
Dear Ryo -

I apologize for the delay in responding to your question - we just got back from vacation, and with my kids home from school for the summer, my computer time is very limited!

Since everyone with CFS is different, I won't be able to cite specific medications or doses for you, but perhaps I can provide some information that will help you and your doctor find the right approach for you.

As I'm sure you know, there really aren't any medications that address CFS specifically, but medications can sometimes help to manage some of the symptoms.  I'm not familiar with Concerta, so I can't comment on that one specifically.

One of the main symptoms of CFS that can be helped by meds is sleep dysfunction.  CFS causes dysfunction in the endocrine system, which - among other things - produces the hormones that help you get deep-stage sleep. For people with CFS, our bodies don't produce enough serotonin and dopamine in the evenings so we end up sleeping only lightly and wake up still feeling tired.

The main class of medications that can help to fix this sleep dysfunction are actually classified as anti-depressants, though they're not used in this case to treat depression.  When certain anti-depressants are given in very low doses before bed, they help your body to produce the hormones it needs for deep, refreshing sleep.  In this way, these medications are actually fixing the root cause of the sleep problems (as opposed to sedatives like Ambien, etc. which just knock you out).  Here are two excellent articles on this subject that do a much better job of explaining it:

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

http://www.davidsbell.com/PrintLynNewsV2N1.htm

Share this information with your doctor so you can work together to find the right combination and dose of medications to improve your sleep.  This can take some trial and error, so be patient and keep trying.  I ended up with 100 mg of trazodone and 45 mg of nortriptyline, and my sleep now feels mostly normal most nights.  My teen son takes about 40 mg of nortriptyline only and that works for him.  Use the information in these articles (the chart is especially helpful) to try different combinations and/or doses yourself.  Fixing the sleep dysfunction makes all of your CFS symptoms better.

Another CFS symptom that is helped sometimes with medication is Orthostatic Intolerance (OI).  More than 95% of people with CFS and FM have OI, a condition characterized by low blood volume and a sudden reduction in blood pressure and/or increase in pulse when standing or upright.  OI is behind many of the symptoms of CFS.  Here is an excellent article explaining what OI is, how to diagnose it, and how to treat it, written by the doctor who first identified it as part of CFS:

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

This summary includes some medications that may help, but the most important things you can do to control OI and feel better are lifestyle changes - ingesting HUGE amounts of salt and fluids, resting, and trying not to stand upright for long periods of time.  The article explains all of this.  Again, share it with your doctor and together you can determine what treatment approaches might help you.

Finally, a fairly new area of treatment for CFS involves treating underlying infections.  Research has shown that many cases of CFS begin with some sort of infectious trigger that leaves our immune systems permanently up-regulated.  There are many common infections that don't affect the general population but trigger symptoms in those with CFS.  These include EBV, HHV-6, and CMV.  There may also be undiagnosed infections causing some of your symptoms, like Lyme and other tick-borne illnesses.  Some people with CFS improve when these underlying infections are treated with anti-virals or antibiotics (depending on what you have).  Here is more information:

http://www.davidsbell.com/LynNewsV3N1.htm

http://www.naturdoctor.com/Chapters/Research/CFS.html

http://www.hhv-6foundation.org/hhv6cfs.html

Again, this is something you need to discuss with your doctor.  Blood tests can show which infections you have.

Overall, you have to keep in mind that there are no medications that treat CFS effectively or get rid of it - only medications to manage certain symptoms.  The best approach to improving your quality of life with CFS is unfortunately the most difficult - changing your lifestyle to allow for more rest, less stress, and carefully monitored and limited activity, avoiding the things that cause you to crash or relapse.

Here is an excellent resource on CFS treatment, covering many of the topics I mentioned here:

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

There are no quick fixes.  Improving CFS requires trying different approaches and patiently finding out what works for you.  I wish you the best of luck in finding some solutions that will help you -

Sue Jackson

www.livewithcfs.blogspot.com