Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Saturday, November 30, 2013

What a pain in the d***

Two major things have been going on in my life since I last blogged (which feels like a year ago to me.) About 4 or 5 weeks ago, I began packing for my big move (to a nearby city).  Around the same time, I started getting pain in my groin, just like the last time I packed and moved in 2005.  (Stop reading here if you're uncomfortable with frank discussions of male anatomy).  This pain persisted for about three weeks until I finally visited a urologist.  He determined that I must have prostatitis, the male version of a urinary tract infection (UTI), and prescribed oral antibiotics (Doxycycline).

I started taking Doxy a few days before moving day and, with huge relief, it cleared up the pain just in time for moving day.  Moving day went off without a hitch (more on that later), and I was pain free all day.

But then the pain came right back a couple of days later, worse than ever.

Worried now that I might have an infection that was too strong for Doxy, I called the urologist and he switched me to a stronger antibiotic, Cipro.  What worries me at the moment is that I've been on the Cirpo (2x day) since Wednesday night (7 doses) and the pain still persists!

I'm wondering now if this isn't a bacterial infection at all.  Before I visited the urologist, I took a few home UTI tests by AZO and they were all negative for infection.  The urologist also had me give a urine sample, but he never reported the results to me and I forgot to ask.  I note that he only proclaimed that I had prostatitis after listening to me describe my symptoms, so I can only conclude he diagnosed me clinically, not by urine sample results.

In the meantime, I have also been taking D-Mannose powder, which came strongly recommended to me by a few message board ME/CFS friends who have dealt with chronic UTIs (part of the fun of having a weak immune system, I suppose.)  So I have also been taking D-Mannose twice per day since Wednesday with no benefit yet.

I suspect this will be an ongoing issue for some time...

Let me tell you, I never thought I'd be discussing my private parts on the internet, but now that I am, it's really not too scary.  We're all adults here, right?

Right....?  [I'm not so sure about myself]


One of the good things to come out of this is that the lymph nodes in my neck and armpit have stopped feeling swollen.  I know that some PWMEs deal with lymph node swelling every single day, but for me, I only started to experience serious, every-day swelling starting about 6 weeks ago, before the groin pain.  (I thought they might be connected, but the urologist said that was impossible.)

Anyway, the antibiotics have put a stop to that daily discomfort for now, suggesting I was dealing with a chronic, low-level bacterial infection somewhere in my body.  I have no idea where.  Top suspects are the lungs, sinuses and/or throat.


The move:

Leading up to the day of the move, I had one wish: that I would not be crashed on the day of the move.  I got that wish.  Even though I had very poor sleep the two nights before the move, I woke up the day of the move with decent health (relative to my baseline*) and adrenaline carried me for the next 10 hours or so.  It was by far the most active I've been since getting ME/CFS.  It was enough activity that I would have been exhausted at the end of the day even before ME/CFS.

I remember finally laying down in bed that night (in a strange new bedroom) and thinking, "With a day like that, I'm due for a big crash."

That crash never came, and the move was just over a week ago.  While I certainly did experience some PEM a day or two after the move, nothing could be described as a crash.

Since then I have been calling contractors and repairmen of all types trying to get this new house in order.  Many of my calls were for tasks that I would have tackled myself prior to ME/CFS.  But this is my new reality and I'm slowly getting used to it.

This new house (which I truly love) is not a low-maintenance house by any means. Which suggests it's not ideal for a PWME.  And I'm OK with that.  The house is old (by California standards) and it's got character and charm, but with that comes maintenance.  Much of this maintenance I hope to do myself, with only proper pacing of course.

I have a running mental list of about 60 or 70 projects, both large and small, that I want to undertake to get this house into the shape I want it.  My instinct tell me to attack them all at once.  The old me would have worked from dawn until dusk over this long holiday weekend until I completed as many tasks as possible each day.

My new reality means pacing and patience, something that is extremely difficult for me.  Nevertheless, I am slowly beginning to accept that (a) I don't have to do everything myself, and (b) it doesn't all have to get done as soon as humanly possible.

I'm learning that I can enjoy the charms of this house even if it isn't set up exactly the way I want it...yet.  And I also realize that I won't enjoy the charms of this house as much if I'm laid up from a nasty crash.


For those that gave me advice and support in the comments section of my prior post related to the move, thank you!  I truly appreciate everything.


  1. Cipro is a double edged sword. While it alleviates the symptoms of CFS/ME, it can also cause crippling pain. Get off the stuff as fast as possible and find an alternative that isn't in the fluoroquinolone class of drugs. You can look up Cipro toxicity or floxing. For my own account with Cipro and how it affects CFS/ME see:

  2. I was wondering if you have ever been tested for Lyme Disease? I am going to be writing a blog today about it at

  3. Excellent to hear you made the move without any attendant crash. That's huge.

    So many of us are used to working flat out on things, like you say. I've also had to get used to calling for contractors to help out with things I would have knocked out myself over a long weekend. Pacing is so key.

    Some folks w/ CFSME who also test high for mercury have reported prostate pain. I've had it off and on myself. Since we're all adults here I'll just say prostate needs to be exercised from time to time. Honestly that's the only thing that has seemed to help me when it flares up. Consider upping anti-oxidants, fish oil, whatever you find helps lower your overall inflammation.

    Cipro can have serious effects on tendon health, so ... just be mindful of no sharp, quick movements while you're on it, and if you don't think you need to be on it... best not. I was on Doxy for two years for a skin condition and I think it wiped out my gut flora, so while you're on either one you might consider probiotics?

  4. I recall reading that cranberry juice is good for UTIs.

    I've never tried it, thankfully I haven't had to. But I remember reading a number of anecdotal accounts of cranberry juice clearing up UTIs.