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 with—it'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...

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.  

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

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.  

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.

I'm Done with Equilibrant

After four years, I'm done with Equilibrant.  (Equilibrant is an over-the-counter immune modulating supplement recommended by one of my doctors, Dr. C.)  Apparently, I don't need it anymore.  I began taking Equilibrant in April, 2012.  Almost immediately, it became clear that the Equilibrant was helping modulate crashes.  The peaks and valleys were less severe and less frequent (especially the valleys.)  So I stayed on Equilibrant at the full recommended dosage of 6 tablets per day for 4 years.

Recently, in my ongoing efforts to find answers to my shortness of breath (SOB) problems, I decided to take an extended holiday from Equilibrant.  In my desperation to find something, anything that helped, I thought there was a possibility, however slight, that Equilibrant was now leading to an autoimmune response that was responsible for the SOB.  So I just quit.  I didn't even reduce the dosage slowly.  One day I just stopped.

It's been about a month or more since I quit Equilibrant and, so far, I still feel fine.  There's been no improvement in my SOB, but that's a topic for another post.  It's possible that I could see the return of the extreme "roller coaster" crash cycle sometime in the future.  For now it seems Equilibrant was the right supplement for me at the right time, but that time has passed.  I seem to have stabilized since I first began taking Equilibrant, so perhaps I simply don't need it anymore.  I'm always happy to give up a supplement, especially one as expensive as Equilibrant, if I don't need it anymore.

At the same time, I've also gone off of a supplement called Immuno-Stim, which was also a collection of immune modulating compounds, which had some over lap in ingredients with Equilibrant.  So far, so good...

Sun and natural vitamin D definitely helps

Lately, I've been making a conscious effort to get more sun (safely, of course, with sunscreen.)  Most people in the ME/CFS community are familiar with the various studies about the links between Vitamin D and sun exposure - studies showing that certain neuro-immune conditions are far more prevalent in higher latitudes, where sun exposure is less.  I won't repeat that literature here.

I've noticed that when I spend at least an hour during a given day with a signifiant amount of skin exposed to natural sunlight, I feel better in the evening and the next day.  I sleep better too.  Much better.  Before I fall asleep, the feeling is of an increase in physical strength. I suddenly feel stronger and more virile.

Since very early after my diagnosis of ME/CFS, I have taken supplements of Vitamin D3.  I've had multiple doctors express to me how critical it is for ME/CFS patients to have Vitamin D3 levels in the normal to upper-normal range.  Under doctor's orders, I have supplemented with anywhere from 5,000 IUs to, at times, as much as 10,000 IUs of vitamin D3 per day.  This has ensured that my vitamin D3 levels on blood tests have maintained in the range of what my doctors say is "optimal."  It's difficult to say if these optimal levels contributed to the steady improvement I experienced from 2011 through 2015.

But I do know that supplemental Vitamin D definitely does not feel the same as the benefits I get from natural sunlight.  I don't know if sunlight benefits me in some way besides Vitamin D (I can't imagine what that could be) or if the natural production of Vitamin D somehow trumps the supplemented version.

When we supplement Vitamin D orally, it must absorb from the stomach through the liver.  By contrast, when we make Vitamin D through sun exposure, some of the vitamin forms on the surface of the skin and then absorbs through the skin.  According to one of my doctors, it can take 24-48 hours for this Vitamin D to absorb, thus his recommendation that I not shower until at least 24 hours after a good sun exposure. (This is very difficult for me to do given the combination of sweat and sunscreen on my skin, but I have been trying to do it.)

The bottom line is, it is unmistakable that I feel better when I've gotten exposure to natural sunlight.  Like everything I've found that helps, it's not a cure-all, but it's one small thing I can do to better manage this illness.