Monday, August 5, 2013

[Personal Stuff] Fibromyalgia and Chronic Fatigue Syndrome, the physical side of things.

I'm going to refer to Fibromyalgia pain as FMS for brevity. Chronic Fatigue Syndrome (sometimes categorized separately, sometimes included in FMS) is abbreviated to CFS.

The part you'll hear the most about when it comes to Fibro is the pain. The non-stop, unending, will sapping, stress causing, pain. Have you ever had a three day migraine? Imagine that in every single part of your body. Imagine your joints are all screaming at you with arthritis, Imagine your hair brushing against your face from a fan hurting you, and now imagine you never know what part of you will hurt, how much it'll hurt and when. It's not fun. This is not something some dreamed up to get out of holding a real job, this is a real, serious, deliberating condition. Its never a matter of being pain free, its a matter of pain level.

Most fibro sufferers start their day with self-evaluation. The start time of their day varies since fibro is normally hand in hand with chronic fatigue syndrome; you sleep how and when you can and its never enough. When you wake up you start the evaluation of 'What is my body doing? How is it feeling? What can I manage today?" and then you get to go look at your calender and probably call and cancel tentative plans in favour of doing something like grocery shopping to put food in your cupboards.

Some days its an accomplishment to make coffee. Some days its too hard to get dressed; hell, some days going to the bathroom is a lesson in torture. You don't realize how many muscles and joints you use for such simple acts until you have back or nerve issues. Some days I am curled up on the couch, trying to work up the enthusiasm to put on a brave face and stiff upper lip and post cute pictures of cute animals to Facebook. Social contact, even if its electronic DOES help; looking at cute things and posting happy thoughts DOES help. It helps mentally, it doesn't help one iota with the pain or stress. when you have a broken leg, wiggling your toes hurts like hell, but you can probably still joke about how you wanted a tie-dye cast before you went to the Fleetwood Mac reunion concert.

As one friend said, "Don't confuse happy with healthy." I can assure you, after fourteen years of this hell, I choose my victories when and where I can. A lot of the time I'll put on the brave face because I don't want to burden other people with my suffering; their life has enough problems, they don't need me to be a Debbie Downer on top of them. Of course, it also occasionally get splattered all across my Facebook wall when I need to vent my spleen. Its a bit of a roller coaster.

Stress does wonderful things to the body and being in pain every day of your life and knowing you'll be in pain for the foreseeable future is rather stressful. FMS patients have digestive issues. They also will have trouble sleeping as much from stress and symptoms as pain itself. Sufferers get tension and/or migraine headaches. (Almost all FMS patients get migraines.) I, like many other FMS sufferers, am also sensitive to bright lights, loud noises, have developed food intolerances, touch and heat makes me physically ill. These may be from stress, autoimmune issues (as FMS seems to come hand in hand with autoimmune diseases), or third party causes entirely.

I also have issues with muscle control, a lack of energy, muscle spasms and general weakness. If I stay in one position for more than fifteen minutes I will be very stiff and its rather painful to straighten up or move.  Standing is quite painful quickly, walking can be as difficult some days.

And if all that's not enough to be a barrier to employment, there is no real predictable pattern to all of the above. It all fluctuates. I have good days and bad days. I have days where I'm horrible in the morning and fine in the afternoon. I have days where the opposite is true. I have a week where you're absolutely fine and then three weeks when you aren't. I have days where I'm not safe to drive because I'm in too much to concentrate. I have days where I couldn't tell you what I just said because I'm in "fibro fog."  I've had to cancel doctors appointments because I'm in no condition to get there or sit in a chair.

I also have some sort of issue in my lower back at the L5-S1 juncture. Some neurologists and neurosurgeons have seen the issue, some haven't. It seems to be a come and go thing. My personal theory is that it's caused by a spinal leak I gained during back surgery. I can sometimes feel a bump in my lower back under the surgery scar, some days I can't. This issue also gives me all the fun associated with back pain and weakens my left leg significantly. I also have issues with my right leg that are not symmetrical to the left

I have numb spots on my legs and buttocks. I can't feel the tops of my feet and my toes tend to feel like there's a 9V battery hooked up to them. Every so often my body likes to spice it up by sending a shooting pain down the main nerve from back of knee to the base of my toes, but mostly its just numb. I can drop things on my feet and not know it, I walk into things, I bang body parts and just not notice. I am constantly looking at my legs and wonder how I gained a bruise or bump.

Heat makes me physically ill. Whether that's a side effect of thyroid or just my system being hyper-sensitive, I don't know. What I do know is that I can tell you almost exactly when it's hit 28C because I'm trying not to vomit. (And if you think standing and sitting when you have back problems is fun, imagine vomiting while you have back issues.)

So, I can't commute to a job, I can't sit to work at a job for more than twenty minutes hour or so on my "average" days, I can't walk around at the job, and some days I can't even stand the feeling of clothes on my skin - most work environments frown on nudity. Working outside the home is impossible, so my next post will be the why's of working at home hasn't been a brilliant idea either.


  1. Thank you for your interesting post Lorna!
    I also live with Chronic pain, no one really knows why. I was diagnosed with CFS about 14 years ago, but refused to accept it as a diagnosis.
    I get soooo annoyed when people say to me, oh but you look so well and you are always so happy... AGH!
    I do work, but there are days I struggle just to get showered and dressed. :(
    Know that I sympathize with you, not in that patronizing way, but as someone who does know what it is like!

    1. I don't think you're being patronizing at all! I recognize a fellow FMS warrior when I see one!

      I, personally, feel fibro is often used a diagnosis when the doctor doesn't know what else to call this nerve / immune problem. I feel its more a group of conditions (like there's multiple types of diabetes, or depression, or..) with similar causes or symptoms rather than just one rubber stamp, here's the problem disease.

      When people say "But you look so well," I smile sweetly and say "Thanks! Imagine how awesome I'd look if I WAS well!" .. But I may have a slight (cough, slight) snarky and sarcastic side.

      Thank you for stopping by and for your support :)

  2. Chronic pain is a real drag. Even on days you feel well(ish), you're still not great. It is a slow incapacitator- you start doing a little less, going not quite so far, staying in more, seeing fewer people, eliminating activities, etc. to the point where you can become quite isolated and inert. Then you have one good day, go do something & everyone thinks you're "just fine". ugh!