Expert: Suzan Jackson - 5/7/2007

Question
Hi there!  I have been "recovering" from CFS/FM for about 7-8 years now.  My health has been steadily improving.  However, about three weeks ago, I began experiencing joint paid in my wrists, fingers and ankles/feet that I had not had before.  My doctor said FM doesn't cause joint pain (!), and he is having me tested for RA, which had me a little freaked out until I re-read the diagnostic criteria for CFS which describes the sort of joint pain I've been having.

I guess what I am wondering is if any of you have experienced joint pain with your CFS/FM and if you can describe what it feels like.  For me, it sort of feels like the joint has been "jammed" and prevents me from using it, but doesn't hurt too much if I leave it alone.  It's not really a dull ache, but a pretty sharp pain.  Sound familiar at all?

Thanks,
Maria


Answer
Hi, Maria -

Sorry for the delay in responding to you.  As I'm sure you know, life with CFS is unpredictable.

How wonderful that you've been steadily improving!

What you're describing sounds VERY familiar to me because we just went through a very similar experience with our 12-year old son (who also has CFS) a few weeks ago.

You don't mention where you live, but when I hear sudden joint pain, the first thing I think of is Lyme disease.  Here in the mid-Atlantic U.S., Lyme disease is very prevalent.  Most doctors here automatically test for Lyme when a patient complains of unusual pain.  However, no matter where you live, Lyme is a possibility.  It's been recorded in all U.S. states, and I've heard it's very prevalent in Europe as well.

Lyme is caused by a bite from a tick infected with the Lyme bacteria, but it's very common to not even know you've been bitten.  The so-called bulls-eye rash that is associated with Lyme is only present about 50% of the time.  Lyme disease causes joint pain, fatigue, brain fog (sound familiar?).  It's often mistaken for CFS and vice-versa.  Left untreated, it can cause very serious and long-lasting effects.

Ask your doctor to test you for Lyme.  To start with, you'll want Western blot and Elisa blot antibody tests.  These are most effective at least six weeks after the tick bite because it can take some time for the body to produce detectable antibodies.  Unfortunately, these tests are not fool-proof and false negatives are quite common.  Your doctor can also order a more expensive PCR test which actually looks for the DNA of the Lyme bacteria.  This is more accurate, but most doctors will begin with the antibody screening tests.

Many doctors who deal with Lyme regularly feel that the only true test for Lyme is to try antibiotics and see if the symptoms improve.  Standard treatment for Lyme disease is 30 days of doxycycline.  This particular antibiotic is effective against the Lyme bacteria and it needs to be used for the full 30 days, as a minimum, because the bacteria have a 28-day reproductive cycle.

So, I think that Lyme is a definite possibility for you, but you might also want to see a rheumatologist.  What your doctor said is absolutely incorrect - joint pain can be a documented symptom of both CFS and FM.  The fact that this is a new symptom for you is why I suspect Lyme.

When it's caught early, Lyme is easily treated with the course I described above.  If your Lyme tests are negative but your symptoms continue or worsen, you may want to just try doxycycline to see if it helps.  

Parvovirus can also cause joint pain; your doctor can also test you for this.

Here is the CDC's information on Lyme disease:

http://www.cdc.gov/ncidod/dvbid/lyme/

The Lyme Disease Network is also helpful:

http://www.lymenet.org/

A word of caution:  Lyme disease is quite controversial among some doctors.  You'll see a big difference between what some "experts" recommend and the under-response by the CDC.  What I've described here is a middle of the road approach that is generally regarded as safe and effective.

With my son, his CFS symptoms are fairly well-managed with medication right now, and he had a sudden, severe crash a few weeks ago.  He couldn't get out of bed and had severe brain fog.  Typically, his crashes now only last a couple of days, but this one went on for almost two weeks.  When he also started to complain that his knees hurt terribly, we immediately guessed Lyme.  His antibody test was negative, but his doctor put him on doxycycline.  Within 24 hours, his symptoms began to improve dramatically.  The knee pain was gone within a few days on the antibiotic.

One final word of caution - Lyme disease is a known trigger for CFS.  It causes CFS to begin in 10% of the people who get it and can trigger a serious relapse in those of us that already have CFS.  That's why we pushed for aggressive treatment for our son.

Best of luck to you.  I'm interested to hear how this turns out for you.

Sue Jackson

www.livewithcfs.blogspot.com