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, January 23, 2012

Measuring Improvement

When I've having a setback, it's easy to forget the progress I've made.  And so, at times like that, it becomes important to resurrect memories of the earlier phases of my battle with ME--to remember how far I've come.  In this post, I'm creating a list of dead or dying symptoms so that I can refer back to them when necessary to remember that I am, in fact, improving...albeit slowly.

As I think back over the last six and a half months, it seems there were two previous phases of my illness.  During the first two and a half months, the ME was in its acute phase, and I had a number of symptoms that I haven't experienced since.  The next two and a half months saw some improvement, but not as much as after I began my latest supplement regimen on about 12/5/11.  In the list below, I note which symptoms belong to which phase, with the acute phase being marked by (*), and the second phase by (†).

Long lost symptoms/experiences:

1.  Kidney-area pain so severe that I had to avoid sleeping on a certain side.  I also had to drive with my back separated from the driver's seat because the seat inflamed the pain.*
2.  Fatigue so severe that walking 150 yards to the cafeteria at Hoag Hospital seemed questionable.*
3.  Nausia and lack of appetite.  I used to keep a column on my health chart for nausea.  After changing to a low carb diet, I no longer even have to fill in that column because the rating is always "0." *†
4.  The distinct feeling, on two occasions that there was "poison in my veins." *
5.  Bloated stomach on two specific occasions during the acute phase, accompanied by constant unrest and gurgling in the intestines*
6.  Muscle twitches.*†
7.  A feeling of tingling or numbness in my extremities, especially the fingers when doing fine motor skills like typing.  Also, numbness in the legs while walking.*†
8.  Extreme light-headedness after standing.  (I still experience this symptom more than before ME, but much less frequently and severely as in phases 1 and 2.)*†
9.  Sore throats.  I used to suffer at least one sore throat a week.  After beginning the ImmunoStim supplement, I no longer get them.*†
10.  White spot on left tonsil.  The sore throats were often accompanied by a white spot on my left tonsil, about a 1/2 centimeter in diameter.  While I still occasionally get this spot, it is smaller and not accompanied by a sore throat. *†
11.  Coloring.  My co-workers used to comment that I had lost all coloring in my face on days when I was feeling particularly bad.  Now, my sickness no longer shows outwardly (other than the lost weight).*
12.  Chills.  I used to get the chills occasionally; sometimes so bad that no matter how many layers I wore, I would still shiver.*
13.  Unusually cold hands and feet.  This started with my illness in July and improved when I started with the thyroid supplementation.  While I still experience it sometimes, it is not nearly as often.*†
14.  A few episodes of green bowel movements. WTH?*
15.  One month of pale, loose, floating stools.*
16.  Two episodes of extreme pain in my groin area, both lasting about 24 hours.  Both were so severe that I had to walk with my legs spread farther apart. (Talk about embarassing!)*
17.  Low blood pressure.  It used to be about 99/68.  More recently, it has been about 120/80.*†
18.  Chest pains.  I used to get these bizarre, stabbing chest pains that would come out of nowhere and stay around for about 24 hours.*
19.  Swollen neck/swollen lymph nodes.  Also stopped after I began the ImmunoStim.*†
20.  Post nasal drip.  For about a 2 months in the second phase, I had constant post-nasal drip.  This stopped when I cut down on dairy and started treating Candida more aggressively.†
21.  Cough.  I had a light cough throughout the first phase.*
22.  Weak urine stream.  During phase 1, my urine would, quite literally, drip out at times.  It has since normalized.*
23.  I had days where I felt too weak to stop for gas on the way home from work.  On other days, I felt too weak to get in my car to grab lunch.  A single trip to the supermarket, or to a restaurant with my wife was once a taxing event. *†
24.  Headaches lasting about an hour at a time.*†
25.  Insomnia.  Prior to December, I would get an episode of insomnia about once or twice a week.  On these nights, I would find myself either unable to sleep or in a state of very light "cat-napping" all night long.  These episodes would absolutely ruin me the following day.  They improved about the time I began supplementing magnesium, and then greatly improved when I started taking tiny amounts of melatonin each night.*†
26.  Swollen lymph node under the right arm pit.*

So, the good news is that I have basically cut my list of symptoms from a maximum of 16 at one time to 3: Fatigue, kidney-area pain, and shortness of breath.  These 3 symptoms I call "my big 3" because they have always been at the top of my list in terms of severity and frequency, and now they are the only three.  This makes it much easier to talk to doctors without them seeming overwhelmed or skeptical.

The bad news is that I haven't made much headway against the big 3.  For a time it appeared that the vitamin D3 was helping with shortness of breath, but recently, it has come back as strong as ever, even while at complete rest.

With regard to the fatigue, I will say that my crashes are shorter in duration and severity.  Whereas I used to crash for 4 or 5 days straight, my crashes now only seem to last a day or two, and I'm not quite as incapacitated as before.  On the other hand, there seems to be a sort of ceiling to my recovery because I can never pass the 90% barrier, no matter what I do.  And I rarely get close to that.

Now, let's see what we can do to destroy the big 3!  Can you sense their fear?

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