Tuesday, August 20, 2013

CFS vs My Left Knee

About five years ago, when I was healthy and relearning how to figure skate, I spent my entire practice session doing three turns.  This involves a nasty torquing of the knee.  For some reason my left knee took issue with this and blew up like a balloon.  After that practice session, it was never the same again.  I had multiple cortisone shots into it which didn't last very long so I turned to my awesome acupuncturist, who kept me skating without resorting to surgery.

Step forward five years to January of this year and the raging UTI that put me into the hospital.  But what does this have to do with my left knee you ask?  Bear with me... To cure this nasty infection, I had an IV of levofloxacin and was sent home with Cipro pills.  A week later I was back in the hospital and this time had an IV of Cipro and was sent home with Bactrim pills.  Not only did this get rid of my UTI but I made a huge recovery of function from my then severe CFS symptoms.  This left the docs scratching their heads and me going for pee tests, poop tests and even SIBO tests.  Of which, nothing showed up other than I needed more Bifida in my diet.  Nothing pointed to why the drugs helped my CFS.

Two months after the hospital visits my doc and I decided to give another round of antibiotics a whirl to see what happened.  My CFS symptoms had slowly gotten worse since Christmas so what the heck.  I took ten days worth of levofloxacin in pill form.  Again I had significant improvement of my CFS symptoms.  Due to holidays, doctor vacations and kid going back to work full time (no more taxi service for me) I couldn't get another round of antibiotics after this even though I wanted to try them again to see if I could improve further.

Now, somewhere along this timeline and of course I have no memory of when exactly my left knee started hurting.  It blew up like a balloon and behaved as if I had been ice skating and weight lifting.  I started to ice it daily.  I had to be careful standing up since it occasionally wouldn't bear my weight. It hurt to go up and down stairs.  I occasionally limped.  My chiropractor tried adjusting it which only made it worse.  Again this was another medical mystery, since I had been couch bound due to the UTI and moving even less than normal for me, there was NO reason that my knee would suddenly start hurting so badly.

Then I finally saw my CFS doc and he told me that Cipro and Levo can cause muscle and joint problems in some patients and he didn't want me taking it any more.  So we came up with a plan to try Xifaxan instead, which I did three weeks ago.  The whole thing was a cluster fuck disaster which I'll get into in another post.

Last Friday I came down with another raging UTI.  Now these things take off fast in me due to my compromised immune system thanks to the CFS.  Within 12 hours I go from "gee there is something wrong" to "get me some f'ing pain killers NOW".  So I was back in the ER being pumped full of IV Cipro again.  I'm now on Levofloxacin pills.

Two days ago I found this:

FDA Drug Safety Communication: FDA requires label changes to warn of risk for possibly permanent nerve damage from antibacterial fluoroquinolone drugs taken by mouth or by injection  

Yes, this include Cipro and Levofloxacin along with a few other antibiotics I've never heard of.

So HELLO knee pain.  It is from the drugs.

However, upon reading the release from the FDA I decided to look into both Cipro and Levo more in depth.  It turns out that this class of drugs can affect the central nervous system, brain and/or heart in some individuals.  Could this be the reason my CFS symptoms improved???  These drugs are doing something to my brain, heart or CNS to make me more functional again?  I mean I was swimming for cripes sake!!  I walked several hundred feet with no crash afterwards!  This a few months after being unable to make dinner most days.  To me it was a miracle!

But now I face a decision:  stay on the drugs and risk permanently injuring my left knee or continue to take them so that my CFS improves.  Talk about being stuck between a rock and a hard place.   I can't bring myself to talk to anyone about it and every day that I take one of these pills my knee gets worse.  The pain never really went away since it first started in winter.  Now I'm having to keep it bound to reduce the pain and swelling and so that I can walk on it.  If I permanently injur it I may never skate again which would devastate me.  But I want to get better from CFS.  I can't stand being so sick I can't shower, cook, clean, walk, shop, read...


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