Expert: Suzan Jackson - 9/27/2010

Question
Hi,
I was ill with CFS for 4 years, but for the last year or so
have had no symptoms, and have considered myself recovered.
However, in the last month I haven't been feeling as good -
nowhere near as bad as before, but I've been having
headaches and nausea, and my energy levels have been a lot
lower. I've seen my GP and they've ruled out other things
and have said it sounds like the CFS again. I recovered the
first time round by pacing really carefully and getting a
lot of rest, and once I was feeling much better introducing
some gentle exercise. I've started pacing again, and this
seems to be helping a bit, but not completely.
I've got 2 questions; first, is there anything else I should
be doing to avoid relapsing more? Second, if and when I feel
like I'm over this, how long should I carry on pacing myself
for? In the last 4 or 5 months I'd stopped resting/pacing
much, and this didn't seem to have any negative effect until
now. Once I'm recovered, how important is it to carry on
resting, and how much rest do I need to get?
Thanks,
Jess

Answer
Hi, Jess -

Sorry for the delay in getting back to you.  Your question is a very difficult one, and I wasn't feeling well this weekend so I didn't spend much time on the computer.

First, congratulations on recovering!!  Sorry to hear some symptoms have been creeping back.

I waited to answer until I had more energy and could give you a thorough answer, but now that I'm sitting here, I'm not sure what to say!

As you probably know, it is pretty rare to recover from CFS and there is little or no data on how often it occurs.  Dr. Bell told me that a lot of people who get CFS probably recover in a year or so and are never even formally diagnosed with CFS - so no way to tell how many are in that group.  He also says that statistically, the best chance for recovery is within the first 5 years, so you fit that profile.  Dr. Bell has done some studies on patients who recovered, but they were all kids when they first got sick.  The ones who I know of mostly still have very mild lingering symptoms, even though they are mostly well and able to live normal lives.  I know of one young man who got CFS as a kid and is now fully recovered.

Your last question is impossible to answer - no one knows this!  It's all uncharted territory - whether recovery is permanent or whether you have to continue pacing and stick to only light exercise.  No idea.

As for what to do right now, I have two suggestions.  First, you should make absolutely sure that this isn't something other than CFS, especially some sort of infection that needs to be treated.  Did you have nausea the first time around?  Nausea, along with generalized flu-like symptoms, is often a symptom of Lyme disease.  Lyme disease has been found in all 50 states and all over the world.  It's becoming more and more prevalent.  Testing for Lyme is notoriously inaccurate.  The best thing to do is to be tested not only for Lyme but for all of its co-infections, too (these are other tick-borne infections that often accompany Lyme).  if you test positive for any 1 of these, then you've definitely had a tick bite and might have Lyme, too.  Here are a couple of blog posts I wrote about Lyme disease:

http://livewithcfs.blogspot.com/2010/07/lyme-disease-and-co-infections.html

http://livewithcfs.blogspot.com/2009/03/cfs-and-lyme.html

The symptoms of Lyme can be almost identical to CFS, so I believe it's important for anyone with CFS to be thoroughly tested for Lyme and its co-infections.  I've had CFS since 2002 and just got Lyme two summers ago, but my experience is unusual - lots of people get Lyme first and are either misdiagnosed with CFS or their CFS develops from Lyme (which is one of several known triggering infections for CFS).

As for pacing and resting, I would say it's important to do both as long as you have symptoms.

Sorry I don't have more definitive answers for you, but I don't think anyone does at this point.

I will ask my blog readers if any of them know about others in your type of situation - who recovered and how they did afterward.  I'll try to post that tomorrow, so you might want to visit the blog and see if anyone responds.  

Good luck to you - I hope this is a minor bump in the road and you are soon feeling well again!!  Your story of recovery is an inspiration to the rest of us!

Sue

www.livewithcfs.blogspot.com