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

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

Thursday, July 28, 2016

I have.... shingles

Over the past two days I've been writing about sensitive patches on my skin.  Up until last night, there was no visible rash.  Then last night a rash developed in two of the three areas where I suddenly have sensitive skin: my abdomen (right side) and lower back (right side.)  My right thigh remains free of visible marks, but still remains very sensitive to touch. In the meantime, another sensitive patch has developed under my right arm (triceps area), and another painful area (which feels more like a bruise, i.e. not on the surface) has developed under my right arm (lymph node?)

I was able to secure a last-minute doctor appointment this morning with my general practitioner, Dr. L.  She took one quick look at my rashes and said "Yep, it's shingles."  Shingles is when the chicken-pox virus (a/k/a varicella zoster virus [VZV], a/k/a human herpes virus 3 [HHV-3]) reactivates and infects the nervesusually on one side of the body.  Apparently the painful rashes last for about 14 days. 

Dr. L said that after a person gets shingles once, it may become a recurring problem.  But if I recognize the symptoms sooner next time, and if I return to her immediately, she can prescribe drugs that will significantly shorten the duration of a shingles outbreak.  She prescribed Valacyclovir, 500 mg, 3x/day for 10 days.

I formerly took Valacyclovir for about 2 or 3 years to control re-activation of HHV-6 and other herpes family viruses due to a weak immune system, which can sometimes allow these old, dormant viruses to "re-activate" in ME patientsor so it is believed by some ME specialists.  This shingles outbreak is making me think I should possibly resume taking Valacyclovir on a long-term basis.

As a final comment, it was really nice to walk into a doctor's office and receive an immediate, concrete diagnosis, and a specific treatment plan.  I'd almost forgotten what that's like.  

Wednesday, July 27, 2016

I'm pretty sure I have allodynia due to autonomic nervous system dysfunction

After my post yesterday about skin sensitivity, a reader emailed comments and a link to a 2013 article from Health Rising about allodynia (a type of nerve pain) in ME and fibromyalgia.  I feel a little embarrassed for not knowing that allodynia is a common symptom in ME and fibro, but I have a tendency to gloss over articles and posts about symptoms I'm not currently dealing withit's the only way for me to reduce the ocean of ME information into something digestible.

According to the article, by Tim Vaughan:
Reduced blood and oxygen flows to the muscles in ME/CFS/FM could set the stage for allodynia and other pain problems...   
“Ischemia” [inadequate blood flow to a part of the body]...[is] where the capillary walls become clogged with platelets and white blood cells, thus blocking oxygen from reaching the muscle. Now the muscle has to deal with lack of oxygen and the inflammation cascade from reperfusion [the action of restoring the flow of blood to an organ or tissue. ...[T]his sets up a great environment for the generation of pain.
I had a eureka moment when reading this article.  In conjunction with my recent doctors appointments, and recent musing on my shortness of breath (and related symptoms), I had already started to reach the conclusion that my shortness of breath, light headedness, and tingling in extremities must be from lack of blood flow to capillaries and tissue.  The one thing that kept me from realizing that blood/oxygen was the problem for so long was that my pulse oximeter always shows normal blood oxygen levels.  But then in my last doctor appointment (3 weeks ago), Dr. M stated that the pulse oxymeter wouldn't detect oxygen levels in the capillaries, and certainly not in muscle tissue. This never occurred to me.  It should have!..but it didn't.

So recently I've been musing about what to do with this new information, still not totally certain that it was a capillary and tissue problem.  Then the allodynia arose.  Then I read this article (linked above) and I suddenly feel certain that I'm dealing with lack of blood flow to capillaries and tissue...probably due to autonomic nervous system dysfunction.

Now the question is, what do I do with this information?  I haven't figured that out yet...

Tuesday, July 26, 2016

Suddenly, I have skin sensitivity

I have no idea if this is related to ME, but for the last 3 days, I have suddenly developed skin sensitivity in three areas on my body: the right side of my stomach, the right side of my lower back (directly opposite the patch on the stomach), and an area on the back of my right thigh.  There are no visible scratches, rashes, or bumps.  In terms of the pain sensation, it feels like those areas have been scratched by sandpaper, and now they are sensitive even to the contact of clothing over them.  I applied a topical over-the-counter steroid this morning, but it hasn't seemed to help.

I can't recall ever reading that sensitive skin was a major symptom of ME, but then again, I've probably read and forgotten an encyclopedia's worth of information on ME in the last 5 years.  A very brief Google search revealed that these types of non-visible skin irritations occur for all sorts of reasons: an irritant, such as new soap, new laundry detergent, contact with chemicals, airborne pollutants, or simply stress.

None of these factors seem to fit.  I did switch to a new brand of soap about three weeks ago, so it's possible the soap had a delayed effect.  More likely, I think I probably overdid the activity this weekend and my body is reacting with increased cortisol and, thus, stress.  I hope this doesn't become a regular part of my entomology.  

Friday, July 22, 2016

Have You Seen This Table of Recent ME Research Findings?

I don't know what saintly person created this table of recent ME research findings, but I wish I could thank him or her.  I'm always looking for ways to simplify and makes sense of the vast amount of information that comes at us in the ME community.  Recently, I have felt less motivated to keep up with all of the research findings because it all starts to seem like disconnected noise after a while; none of it leading to any real-world solutions for us.  Charts like this are helpful to see the "big picture."