Wednesday, February 27, 2013

CFS Update

It has been a crazy month.  I continued to get better.  I was driving around town, reading for an entire half hour, cooking complicated meals, walking several hundred feet at a shot, cleaning the house and generally feeling pretty darn good.  Like maybe this was finally over and I'm possibly going to get better.  This is the best I've felt since Dec 2011.  Then I ran out of methylB12.  I went through methyl withdrawal which means I have to take large dose of potassium to stop the muscle pain.  And of course I started dragging a bit.  Kid and I went and picked up the new syringes of B12 and I took the next shot but it didn't have the same effect.  In fact it was insanely painful.  Too painful.  I called the doc and arranged for an appointment to discuss alternatives.

So last week I had to drive to Cambridge to see my treating CFS doc regarding the shot.  We decided to go back to the glutathione IVs and just have the B12 in the shot.  This should reduce the pain considerably.  Then kid and I drove around a bit and had some fun.

The next day we had to get up early and drive into Boston to see Dr. Komaroff, the world famous CFS doc.  The appointment was uneventful.  He gave me crap for drinking raw dairy, was happy with my improvements and didn't want to change my treatments since I seemed to be doing well with them.

Kid and I drove to my old neighborhood to see where I lived when I first came to this country.  Yes, I'm an import from Britain.  I found the old apartment which looks just the same as when I lived there 40+ years ago.  The convenience store is still on the corner and open for business.  My mum used to send me there to get bread and milk for her.  My sister and I used to go down there for candy if we had an extra quarter.  We tried to find my old school but I couldn't remember what street it was on and I had no idea if it was even still there.

Anyway, all this activity has made me crash pretty hard.  I spend Saturday and Sunday on the couch resting.  I've been falling asleep at odd hours and haven't settled back into a regular sleep schedule.  I can't read at all.  I can't drive.  Today was the first day I managed to cook.  I had my first glutathione IV yesterday in over a month.  I had a mild panic attack in the car on the way there.  I knew I needed to lie to get out of the car and lie down.  I took a nap in the comfy chair during the IV.  My new B12 syringes showed up today so I'll get a methyl shot tomorrow.  I'm slowly recovering from the crash but it is going to be one of those slow recoveries.

I get the sense that whatever miraculous recovery that occurred after my hospital stay is slowly wearing off.  I'm crossing my fingers that this isn't the case but I won't know for sure until I normalize after this crash.  I need more patience.  I am SO done with being sick!

Tuesday, February 5, 2013


I've now upped my dose of Equalibrant twice so I'm now taking four pills a day.  The goal is six.  I'm way more active in general and seem to be sleeping quite well without the use of sleep aids.  I'm slowly becoming nocturnal again so the 8pm bedtime was rather short lived.

Only trouble with this rosy picture are persistent low grade headaches and constant low grade back pain.  It is bad enough that it is irritating and to have to deal with it constantly for several weeks now is starting to get me down.  Every move I make hurts.  Every position I sit in hurts.  I can NOT get comfortable.  I'm starting to pop aspirin again and I have to be careful or I'll be taking it like candy which isn't good at all.

There are several possibilities of the source of the pain: a side effect of the Equalibrant, using muscles that aren't used to being used and/or fibro or a combination of any of these factors.  For instance, I hung up all of my clothes that had been in a big pile in my bedroom.  While hubs does do the laundry, he stinks at putting it away.  I found my summer clothes at the bottom just to let you know how long this has been piling up.  Anyway, I was folding and hanging clothes for two hours.  Not constantly.  I took several breaks and had a couple of lie downs but two and a half hours later I reemerged from the bedroom.  Within a few hours, all the muscles in my upper back stiffened up, which lead to a mother of a headache that wrapped around to my jaw.  This made me worried that a migraine was imminent.  Turns out my muscles were just screaming at me.  I'm sure the fibro kicked in and amped it up a few notches.

So I'm still figuring things out.  I am starting to wonder if I should ease off the Equalibrant but I LOVE the energy it is giving me.  I'm NOT crashing after exercising!!!  Holy crap when is the last time THAT happened!?!  Like 3 YEARS ago!!!  I guess I'm going to have to add in PT or yoga or Tai Chi to my day to get my muscles working again and ratchet back the fibro a bit.  I never expected to be saying that this soon!