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

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

Monday, August 8, 2016

Shingles update

I've now had shingles for 16 days (if you count from the first day the pain started, even though there was no visible rash until 3 days later.)  After the visible rash appeared, prompting me to see my doctor for a diagnosis, and to begin taking Valacylovir (500mg 3x/day for 7 days) and L-Lysine, the rash continued to worsen for another 3 or 4 days.  The rash grew from initial spotty patches on the right side of my abdomen until it eventually formed a more-or-less complete band stretching from my navel around the right side of my torso, to my spine.

I would have never thought it possible that the mere touch of clothing to the skin could be painful, but that's exactly what happened.  Even the gentle touch of cotton shirts has become fairly painful. On the other hand, the pain isn't so excruciating that I can't focus on other things if needed.  Most of the time, I can ignore the pain and focus on other tasks.  But when my mind is unoccupied, and especially when I'm walking around (thus creating more friction between my shirt and my abdomen) the pain becomes fairly intense.

As of today, the rash is slowly disappearing but the pain continues to wax an wane.  It is the "waxing" part that concerns me slightly.  The pain had been trending less severe along with the fading rash until yesterday, when it started to become more painful again.  Today again, the pain is as intense as it ever was.  So I will continue to evaluate my options and perhaps seek more Valacylovir from my doctor.

Why did this happen?  Other than the obvious--that I have a weakened immune system due to MEthis happened because I "pushed" myself too hard.

I felt the first symptoms on a Sunday.  The prior Thursday, I'd experienced a very poor night of sleep. I was already in the midst of period of increased stress in my life.  [Trigger warning for severe ME patients]  Then I did a stupid thing: I went to a concert on Friday night, as if I was a normal, healthy person.  I even drank a beer.  Then, after the concert, I had another poor night of sleep because of the stimulation of the concert, its late ending, and the alcohol.  Then, the next day, apparently having completely lost my mind, I attempted to go to a museum with some friends.  This was far more than my ME-depleted system could handle. By Sunday I knew I had overdone it and there would be a severe price to pay.  I felt like hell.

I was correct that there was going to be a price to pay, but I couldn't have predicted that it would take the form of shingles.  But sure enough, that Sunday is when I felt the first strange symptoms as I noticed that my clothing hurt.

Lesson learned...

For anyone interested in further reading, here are two articles regarding possible connections between ME and the VZV virus (the shingles / chicken pox virus.)

http://phoenixrising.me/archives/5806

http://sacfs.asn.au/news/2014/06/06_03_link_between_shingles_and_cfs.htm

Final note:  Is it me, or is shingles a particularly nasty word?  It evokes all sorts of disgusting images in my head.  It's as if roofing tiles are going to grow out of my skin.  (*shudders*)  Ew.  

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."

https://drive.google.com/file/d/0B_Dn3IXWlI9fTGdpSjkzcmtWRUU/view?pref=2&pli=1

Monday, June 27, 2016

Article: biomarker for ME might be found in the gut biome

This article from Cornell Chronicle summarizes recent findings published in the journal, Microbiome, reporting that researchers could predict whether a person has ME based on the diversity of their microbiome, using stool samples.
"The researchers sequenced regions of microbial DNA from the stool samples to identify different types of bacteria. Overall, the diversity of types of bacteria was greatly reduced and there were fewer bacterial species known to be anti-inflammatory in ME/CFS patients compared with healthy people, an observation also seen in people with Crohn’s disease and ulcerative colitis. 
At the same time, the researchers discovered specific markers of inflammation in the blood, likely due to a leaky gut from intestinal problems that allow bacteria to enter the blood, Giloteaux said. Bacteria in the blood will trigger an immune response, which could worsen symptoms."
These might not be the most revolutionary findings, especially regarding the lack of diversity in gut bacteria (first quoted paragraph above), but I had never heard that it was, specifically, bacteria, that leaks into the bloodstream in leaky gut syndrome (second quoted paragraph).  The leaked substance has usually been described more generally as "particles" or "toxins" leaking into the bloodstream, not necessarily bacteria.  Could this be a significant finding?

Still, the articles doesn't address some obvious questions.  What is the connection between the lack of diversity in the gut biome and the leaky gut condition which allows some of those non-diverse bacteria to enter the bloodstream?  And what are the "specific markers of inflammation in the blood" the article references? Unfortunately, we would have to access the original publication in Microbiome to find out.  


Monday, June 6, 2016

5 Year Anniversary

Yesterday was my five year anniversary of having ME/CFS.  As almost every patient says on their anniversary: that happened fast!  At the same time, sometimes it almost feels like it is hard to remember a time when I didn't have to manage this illness.

I'm basically at the same place I was last year at the 4 year mark:  I have improved somewhat, stabilized really, since first getting ME/CFS, but any hope of recovering based on current treatment options is mostly gone.  If it was going to happen, it would have happened already.  So the treatments I'm trying these days are more geared toward managing the illness and hopefully preventing it from getting worse -- a main focus here is preventing the gradual buildup of toxins and oxidation in a body whose detoxification mechanism is broken.  My doctor believes this kind of build-up can hit a critical mass and cause irreversible crashes.

I continue to be hopeful that medical advances will lead to significantly better treatments and possibly even a cure in my lifetime.