ME/CFS My Version – Ion Channelopathy - Could It Be Yours?

04/10/2012

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© 2002 Nature Publishing Group Marbán, E.
We all understand that the very definition of ME/CFS means that we don’t all have the same disease – just the same label.  We’ve been culled into a symptomatic description of a syndrome that includes many disease possibilities.  No one has the answer that will cure all of us no matter how much we wish it were true.  With that disclaimer out of the way, I’m going to pull out my soap box and write about my version of ME/CFS and what I think was the key to my full recovery.  My reason for doing this is that I feel strongly that some percentage of those labeled with ME/CFS or Fibromialgia have what I had.  If this helps just one person recover, I’m thrilled.

Ion Channelopathy – As part of my eight step protocol I drank an 8oz can of V-8 vegetable juice everyday.  My intention was to add salt to my diet so that my chronic low blood pressure would rise to a more normal level (so please don’t start chugging salt as it can be dangerous).  I was not aware at the time that I was also providing my metabolism with a liquid Ion Cocktail - full of high dose, easily available ions – specifically sodium, chloride, potassium and calcium (the calcium was taken as a supplement at the same time).  If you feel that this may apply to you, you should discuss it with your medical practitioner before undertaking any course of treatment.  Under the supervision of a medical doctor, you can determine any contraindications and regularly monitor your blood pressure.

I wrote up a full description of my thoughts on this for a later edition of my book.  In case you have an earlier version, read about Ion Channelopathy under Further Lessons.

Have you had any experience with ion therapy?  Did it help you?  Please COMMENT or Send in your thoughts and I’ll post them.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.

Look for a weekly posting on Tuesdays.  And consider being part of the conversation.

Be Well Again,

Martha
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Diagnosis - Back Off Please

10/18/2011

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© 2011 TSM
With all that we know about ME/CFS being a wastebasket diagnosis, I am frequently caught off guard when someone, who doesn’t even know me, declares that I didn’t have CFS.  Could anyone be a member of our community and not know that we are a collection of patients suffering from any one of several diseases clumped together?  These ‘experts’ diagnose me from afar.  Without so much as a lab result, they decide that I have ‘pick-your-favorite’ disease.  Many of these diseases are ones that I was either tested for or followed treatments which would have improved my condition if they had been the problem.

The vast majority of ME/CFS sufferers that I meet have been tested for everything and have pursued every treatment that they’ve heard of – even the ‘wacky’ ones.  I tend to attribute this to my observation that most of these same patients were full blow type A personalities when ME/CFS knocked them down.  I was one.  And what do we do when we get blown off track?  We roll up our sleeves and throw our full blown type A personalities right back at it.  Of course, that blew up in my face and my experience is not unique but more on that in a future blog.

So who are these ‘experts’ who need to dismiss others in our community as ‘imposters’?  What is their agenda?  What do you do to deflect this kind of negativity?  Please COMMENT or Send in your thoughts and I’ll post them.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.

Look for a weekly posting on Tuesdays.  And consider being part of the conversation.

Be Well Again,

Martha
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Diagnosis - Generate Your Own Data

08/02/2011

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© 2011 TSM
My last blog encouraged patients to pursue a thorough screening with a skilled diagnostician before accepting a diagnosis of CFS (fibro, ME, etc).  If you’re sure that you have the right diagnosis, welcome to the waste basket. 

From my perspective, the most important thing to remember when you receive the diagnosis of CFS is that you’ve been thrown into a category with thousands of other patients based on weak criteria.  That CDC definition covers A LOT of territory.  In other words, we don’t all have the same disease.

Decades from now, I’m sure that medical research will identify a few diseases that will be culled out of the CFS basket.  Some of our currently known autoimmune diseases were formerly thrown in with CFS.

So you’ve got CFS but which version do you have?  AND what if one of the diseases in the basket presents differently based on the individual patient’s underlying genetics and complicating conditions?  That’s a lot of variables in play.

In my book, the first step in the protocol is – Understand Your Version of CFS.  You can read well researched articles on CFS all day long which discuss its possible causes/treatments/solutions but you won’t know if any of it applies to you unless you have a solid reference point to yourself.  The strategy is to generate real data - HARD data specific to you.

I can already hear the groans coming from readers.  The list of ‘must dos’ for a CFS patient is already overwhelming and impossible most days.  It’s ridiculous to think that a patient could take on another chore.  And that’s a fair perspective.  When I was sick, I felt the same way.  But for almost two years, I wasn’t getting anywhere.  And I had no real baseline to use to evaluate my progress or decline.  And please don’t think that you can trust your impaired CFS memory to recall how you’ve been doing for the past week, let alone a month or a year.          

We all know that the definition of insanity is doing the same thing over and over again and expecting different results.  The day that I accepted that my ‘going nowhere but down’ path wasn’t going to cut it for the rest of my life, I started writing things down.  So collect data every day.  Day by day.  Boringly, day by day.  Treat yourself like a lab rat – a case study of one.  As the data accumulates, you’ll begin to see what your version of CFS looks like (more on that in future blogs).

So what kind of data do you collect?  If you’ve been collecting data that was helpful to you, please COMMENT or send your ideas in and I’ll post them.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.

Look for a weekly posting on Tuesdays.  And consider being part of the conversation.

Be Well Again,

Martha
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Diagnosis - Are you Confident with Yours?

07/26/2011

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© 2011 TSM
When I talk with CFS patients who have been struggling for a long time and listen as they describe their symptoms, I sometimes question whether they actually have CFS.  Not from the perspective of a medical practitioner but from the straight forward CDC definition.  Here it is again as a refresher.

                   Centers for Disease Control - Chronic Fatigue Syndrome                                                  

A clinician should consider a diagnosis of CFS if these two criteria are met:

               1.      Unexplained, persistent fatigue present for 6 months or more that is not due to ongoing exertion;
                         is not substantially relieved by rest, is of new onset (not lifelong) and results in a significant reduction in
                         previous levels of activity.

               2.      Four or more of the following symptoms are present for six months or more: 

                          o        Impaired memory or concentration
                          o        Postexertional malaise (extreme, prolonged exhaustion and sickness following physical or mental activity)
                          o        Unrefreshing sleep
                          o        Muscle pain
                          o        Multijoint pain without swelling or redness
                          o        Headaches of a new type or severity
                          o        Sore throat that's frequent or recurring
                          o        Tender cervical or axillary lymph nodes

                                                   
As we’re all too aware, CFS (Fibro, ME, etc) is a waste basket diagnosis.  If a clinician can’t determine a known disease for a patient and if the above fits, then you get the ‘no diagnosis’ diagnosis of CFS.  It translates as “I can’t find anything physically wrong with you but you seem to be sick”.  Unfortunately, some patients are receiving this diagnosis before they have been thoroughly evaluated and tested for known diseases.  If you have health insurance or can pay for a thorough examination, do consider it.  Even if you were tested at one time, it may have been a few years ago.  Medical knowledge is expanding rapidly and not every physician is a good diagnostician.  Each medical specialty has a different view of the biomedical pathways of the body.  A neurologist will evaluate you differently from a rheumatologist.  And if this process does generate a hard diagnosis, it might be easier to treat than CFS.  Granted, some of the alternative diagnoses are not something that you really want to have but known is an advantage in seeking treatment.

 I’ve also encountered the flip side of the CFS diagnosis.  Lay people and physicians who’ve never met a particular patient declaring (based on anecdotal information) that the patient doesn’t even have CFS.  They state confidently that the patient actually has ‘fill in diagnosis of the week here’.  This always amuses me but I’m concerned about the desperate patients who are sent on pointless, energy wasting disease chases.

From my perspective, when it comes to a diagnosis, information and hard data rule.  Followed by a chaser of common sense (more on that in my next blog).

So what’s your definition of CFS?  Serious, laughable, irreverent, fun?  Please COMMENT or send them in and I’ll post them.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.

Look for a weekly posting on Tuesdays.  And consider being part of the conversation.

Be Well Again,

Martha
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