Head and shoulders, knees and toes : Fampyra diaries 3

Well, I'm a shower of sh** today, as my charming ex-father in law would put it.

On Fampyra now for several months, and I am walking better. Is it the Fampyra? Who knows.

I'm also having a lot more spasticity in my muscles. Fampyra? Who knows.

Last several days, my legs and feet and bum have been very unhappy with one thing or another. Twitching, spasming, my toes curling up or just painful and very touchy. Shoulder was damaged in another incident, so I'm hobbling along, a mass of unpleasant sensations with no where to put them.

I've taken to using my rollator if I have any distance to walk. Sigh. Sexiness quotient = 0.
Of course, staggering like a drunk leads to entirely the wrong sort of attention. Tough call...

So, slurping bafclofen and my medMJ and hoping the pain goes away soon.
Frustratingly, sometimes it does, completely, for, like, ten minutes, and I can walk like a normal person and my hips and knees stop complaining. Then the mask drops back down again and I am writhing.

I suspect a new lesion in my spine...maybe some compression there? As we all know, it's foolish to diagnose yourself, but so much of chronic disease management is just that.

Keeping on with Baclofen, Fampyra, and now back on Cymbalta to deal with the depression caused by the holes in my head. Maybe it will help with pain, too - it did before. Polypharmacy, here I come, yet again.

Am paying for my Fampyra now after getting two free sample months. Don't know if the benefit is worth the cost. will have to consider when this batch is done. It DOES seem to be disturbing my sleep pattern.

medication tango

Being a "patient with MS" means being a patient on a cocktail of drugs, most of the time. They pitch and yaw you, spinning you between spasm and lethargy, dizziness and balance, drowsiness and energy. It's like walking a balance board with wobbly bits. There's temptation on that balance board, too. But you always pay.
Today, for example, I am totally stoned. Last night I took my usual medication to stop my legs kicking violently - it's a benzodiazapine and I've stayed on the same dose for a long time, for which I am proud, as these drugs are addictive, habit-forming, and require, usually, a regular upping for effect. I might, in fact, need to up mine as I wake so often at night, but I'm fighting that fiercely.
And last night I took a full pill for my leg spasms - baclofen - the mystical drug that has put so many people into wheelchairs. See, the same controls that make your legs spasm painfully are also the ones that make them able to hold you up. Usually I take a half pill. I didn't last night, wanting to try to sleep an entire night for a change.
So today I can barely see outta my eyeballs. I am too tired to drink my coffee. Taking the dog for his morning walk was like a trip in my head - I have little remembrance of the event, not of the temperature of the day or the smells of the air or anything. I finished my shower without noticing the plug was in the tub so the water was up over my ankles. Fair enough, I can't feel my feet anyway, but I should have noticed the sloshing...
So, I'll have to adjust down again and deal with the hours of nightmares I have every night, probably caused by my waking in the midst of them. And be tired because of that. And have painful bum spasms when I walk. Tra la tra la!
Added to that, I've been taking big doses of Vitamin D, 4000 iu a day, and now I find out it seems to be tied to heart disease. So will have to adjust that as well.
Of course, my copaxone dose remains the same. Always. No matter what I weigh or how ill I am. This baffles me, and makes me doubt it's efficacy, especially since I don't seem to be holding steady in my disease.
But maybe it's all just drug reactions? Or interactions? Or something?
I hate having to learn new dance steps all the time.

Oh blessed drugs!

One of the things about this foolish, changeable disease, is that you have to do so much self-management, sometimes in spite of your doctor. One can always hope to be on the same wavelength, but occasionally the focus differs and you have to think it through yourself. My neuro told me that the Baclofen I'd been prescribed by another doc for spasticity wasn't really needed in my case since I didn't have any spasticity.
Well, true, then I just had twitches, not spasms. So he gave me drugs for twitches.  Fair enough.

But I've been unable to walk more than a block without pain for weeks now. Some of it is no doubt due to the kidney stone thing, but even once it was gone, my legs weren't working together.  One foot spasmed regularly. Pain and I became close personal friends.  And as someone whose big kidney stone was found halfway down the ureter (and I was in minor discomfort), when I feel pain, it should tell me something.
So today I decided to try a baclofen.  And you know what? It worked. I just came back from my first fast walk in weeks. My legs worked together with my knees and I could hoof it as I like to, fast enough to satisfy even the rampant poodle.  My hips swung along like they are supposed to, easily, cheerfully, enjoying the movement. It was f-ing amazing.
Motion is so wonderful to experience when you've lost it for awhile. There is something so mystical about the way a body works together, the way the hip swings in the socket, the way the shoulders move within the framework of muscles, the support and flexibility of the spine.  I am almost giddy with the joy of it all. Those of you, who can move easily - go for a walk. It's a true gift.