M.E./CFS and overlapping conditions

It's really hard to tell sometimes what symptoms are caused by the M.E./CFS and what symptoms are caused by another condition.

Because they don't fully understand the pathology of M.E., it can be difficult to tell where one disease ends and another begins.

For example, fibromyalgia often overlaps with M.E. Some Dr.s believe they are the same, (some believe neither exist), but the research I've read indicates differences between them, even though there are a lot of overlapping symptoms.

M.E./CFS can also look like a lot of other conditions: viral infection, Lyme's disease, AIDS, multiple sclerosis, lupus and other autoimmune diseases, celiac disease, hypothyroidism, etc., etc.

Every time over the years I've seen a new GP they start trying to figure out what's "really" wrong with me. The usual go-tos are infection, autoimmune disease and thyroid disease.

Recent research on the success of the drug rituximab
http://www.medscape.com/viewarticle/752067

led Norwegian researchers to speculate that M.E./CFS is a type of B cell autoimmune disease.

This month I'm curious what other conditions/diseases people have been diagnosed with. I have a poll on the right. Of course I couldn't list every condition so I put some of the more common overlapping ones.

The only one I have been diagnosed with (and it's common in over 80% of M.E. patients) is Orthostatic Intolerance - in my case both POTS and NMH.

My most frustrating 6 M.E. symptoms during the last month have been:

1. fatigue and weakness
2. the shakes/tremors (I think caused by POTS)
3. feelings of having influenza such as painful breathing, and that icky, sick feeling (malaise)
4. dizzy spells when standing and red, sometimes purple hands from blood pooling
5. dry sore eyes
6. painful lymph nodes esp. axillary (armpits)

fighting feelings of guilt

After the cabin trip last week I crashed for a few days as expected.

Since then I've been just my typical low energy, fluey, sick self of the fall. Quite disabled to tell you the truth. I've been on two quick (30min) outings (with a chauffeur) in the last week and both were draining to the degree that the outings were miserable affairs.

I think I need to accept my home-boundness right now, but it's hard. I'm used to being able to go out once or twice a week without a crash if I play it right. At present, that just doesn't seem to be the case.

I'm pretty sure (80%) that I'm going to take a medical leave of absence from the PhD starting in the winter. I've got a meeting scheduled to discuss it with my supervisor in early December.

While I'm probably well enough to squeeze out a few hours of research a week, I just haven't had the motivation since the end of summer. I'm collecting grant money and doing nothing to earn it. It doesn't feel right. I can't justify taking the money.

I like that a leave is just that: a leave. I'm not quitting. I could start up again next fall if I'm doing better. It will be VERY hard to live purely off of the social services disability I receive, but I think/hope I can make it work....

You know, I've always felt guilt around not being able to work and receiving government $$$. I'm not sure if that will ever go away (unless I get better and am able to work). However, in the words of my specialist "you need to get over that".

One of my mantras living with this illness is "It's not my fault I'm sick" and "I didn't choose this". Actually, it really helps to remind myself (sometimes multiple times a day) of this.

• I don't want to be sick



• I'm not choosing to be sick



• I'm not actually lazy, or unmotivated, I'm sick



• I would love more than anything to work, earn a living, have a social life, hobbies, etc.

Chronic illness brings with it a lot of stigmatism (especially M.E.). We live in a society that valorizes strength, toughness, and overcoming challenges. People who get sick and don't get better (the chronically ill) don't really fit this ideal.

At the same time, living every day sick and enduring the pain/fatigue/weakness/suffering we do takes immense amounts of strength. But being a mostly invisible illness (one you can't see from the outside) only those of us who live this reality really understand how much strength and toughness is involved.

With the PhD I've been doing something concrete - albeit at my own pace - but it's given me some feelings of self worth. It will be interesting to navigate my better moments and hours without the work of the PhD hanging over me, but also providing productive activity for my goal-oriented self.

Do you ever feel guilt around aspects of being ill? How do you navigate those thoughts/feelings?

Get-away

GET-AWAY ACTIVITIES:

My roommates and I spent 2 nights at a cabin in a near-by park this week.
I did this get-away once before without crashing/relapsing.

The weather was cold, windy, and cloudy mostly - we even had snow the last day.

We sat out by the fire a lot, ate a lot, and I did two walks. One was a good distance (flat and equivalent of a 1/2- 1 block - 5min or less), the other was too long. I haven't had a big crash yet, but quite often it comes 36-48hrs later, we'll see. I'm feeling sick, but not terrible.

With the second walk I just couldn't hold myself back and it was down hill on the way there (to a Lake Superior lookout) so I kept going. On the way back it was gradual up hill and a real struggle. I had to stop lots and rest. Afterwards I had constant leg tremors for the rest of the day, all night, and into the next day.

Otherwise, I took it pretty easy - reading, resting, and some visiting.

WILDLIFE:

We saw lots and lots of deer - including bucks, a wolf on the side of the road that actually howled after I tried howling at it (poor photo sorry), a few ravens, some whiskey jacks/Canadian jays, a red squirrel and some snow buntings.

I'm posting a few photos....enjoy

progress in millimetres

While I've made no huge gains in my health the last week or two, the trend has (wonderfully) been towards feeling better. Better in millimetres rather than leaps and bounds, though.

My period of feeling intensely fluey and weak is mostly shorter these days - like from noon until 6pm instead of 10am (when I get up) until 7pm or even until I go to bed.

Of course I still feel ill all day every day, it's just with lesser intensity, even for a few hours a day, I feel as if I can cope.

This feeling better still seems to be predicated on me being home laying down most the day. I have managed some small (less than an hour) outings without crashing if someone else does the driving. The photo here (while not a great one) is from the evening when my friend J came to take the dog to a park nearby. I asked her to take me along too. The plan would be for me to sit by the creek while they walked.

Unfortunately the dog didn't like the plan (she sticks to me like glue) so she ran around wildly from J to me....I kept telling her "go find J" and she would cock her head listening to me, look in all four directions, and then tear off for five minutes or so running through the fields woods and creek...it was actually pretty entertaining.

I'm still considering a medical leave of absence for the PhD, though. I'll give myself the month of November to work, and if I still haven't found a way to make some progress, I'll take a two term leave. I'm not putting much pressure on myself to do things right now. I want to continue focusing on my healing and recovery from the relapse and treat myself gently....after what I've been through I feel like I deserve it.

I tried one very short shopping trip this week just to buy a card for my Aunt. I put on my compression stockings and my roommate drove me to the drug store. Within two minutes of standing in the card aisle I managed a complete black-out (I didn't fall).

The OI is obviously still pretty severe...my hands pool blood most the day (even laying in bed) and I can't stand still for long. I can, however, do very very short 1/2 to one block walks on my better days. If I'm moving I don't seem to get the dizziness. However, I still have to be very careful about "overdoing" and crashing.