I refuse to abandon all hope

[stephbg]

Went to the GP Dr D today as I needed a new script and wanted to discuss some investigation and treatment ideas. Got the script, got some validation for ideas, but no solutions. One keeps on fighting. One must.

The script was just for Yasmin (a contraceptive) which has got some negative press lately about causing blood clots. Dr D made sure I was aware of this (which is good) and asked if I wanted to try something different. Much as I'd love to be on something a bit more mainstream and oh-god-please cheaper, this is the only hormone regulator that comes close to dealing with the witches brew cooked up by my lady parts. The trials for alternatives were crazy amounts of Not Fun. Fortunately Dr D is not at all concerned about the Yasmin, and having been there for The Trials was fine with giving me another year's worth.

In a similar vein he was also happy to give me a new script for Stilnox, the somewhat controversial sleeping pill. I only take these very occasionally, usually as part painkiller as well as sleeping aid on really bad nights (There's one lined up for me when I finish writing this – woohoo!). I have a small handful of pain relief options but they all have side effects – sometimes it's a question of choosing the least of multiple evils depending on what I might foolishly hope to achieve in the next day or three. I can't use any one of them for more than a couple of days at a time, and at the end of it there's always a hangover so the net result is always a loss.

One of the pain and mood management things I used to do a lot was to remember/imagine myself moving freely and without pain. I'd draw on kinetic memories of Tai Chi, Chow Gar (it's a style of Kung Fu – and how I f&^%ing MISS that), ballroom dancing, swimming, riding, and so on. Swimming was like flying. I used to drive with my entire body – I'd feel every feature on the road, every note of the engine, every tug of the wheel, all the tiny g-forces on my body and the car... Such a shame all that sensitivity has turned to agony.

Anyway, I can no longer remember or imagine moving freely and/or without pain. If I imagine moving it hurts twice, because if I'm relaxed or trying to sleep any thought of movement provokes vague and lurching muscle action, if only a twitch. It hurts twice because moving hurts, and because the memory of moving hurts. If I'm awake and actually trying to move, it just hurts because moving hurts, but more so because there's more actual physical action going on.

This is unfortunate, and represents the loss of a great therapeutic tool. On this Dr D and I were agreed. Good start.

(BTW it also hurts if I'm not moving. It always hurts. Hopefully when the weather starts playing nice again I'll get some relief some of the time in some of the bits.)

What I wanted to find out was whether it might be possible to undergo some kind of anaesthetic, sedative, or nerve-blocking  treatment under medical supervision that would allow me to experience life without pain if only for a few minutes, so I could imprint some fresh memories to draw on and rehearse later. Dr D liked the idea, but as we discussed it he really didn't think it would be possible. I could be numbed from the neck down and put on a ventilator, but that wasn't at all what I wanted. End of story, basically.

I'm not quite done with the idea though, and will come back to it perhaps to try with just an arm, or foot, or hand. Anything might help. Being able to imagine/remember what it's like for just a small part of me to be *quiet* could still be of value.

The other discussion was about the pain in my hands in particular, and whether I might benefit from further investigation or attention from specialists. Middle Sister expressed surprise that I'd never had an X-Ray, for example. I've never actually seen a rheumatologist and it's a very long time since I've seen a neurologist. Maybe there was something else going on that could be treatable – arthritis or carpal tunnel, or *something*. So he poked and prodded for a bit, and at one point squeezed my knuckles together in a sort of very gentle handshake – which made me yelp in agony and snatch my hand away. He's of the opinion that fibromyalgia explains it all, and there's no point in going to see another specialist who'll just tell me the same thing. He did offer to write me the referrals, but just didn't think they'd be of actual help.

Pain relief and management is where it's at, basically, but we discussed what I've been doing and there's not really anything left in the behavioural basket for me to try. I got much the same from my psychiatrist Dr T when I saw him last.

Well poo.

This was all a bit disappointing but it's not the end of the road. I plan to have much the same conversation with the significantly more open-minded Dr NF at some point. There's also the option of a nerve-blocking/anaesthetic trial of some sort on a specific body part. Maybe feeling numb is what I need after all. Can't hurt to try (geddit?). And I can always take up the offer of the referrals anyway and just go and see what another expensive opinion looks like. I wouldn't mind learning a bit more about all the spots on my brain MRI. The information may not be useful in the short term, but maybe eventually it will add up to something.

Oh, in other news I had a major screaming breakdown the other day (with actual startlingly loud screaming). Straw that broke the camel's back was tax paperwork for medical expenses, but there were many many straws. The experience was shocking for poor Husband (and I'm a little disappointed none of the neighbours called the police), but incredibly cathartic for me and I felt much improved the next day. But whoa, I got low. Throat still feels a bit rough.

Current theme music is Tubthumping by Chumbawumba:

I get knocked down, but I get up again.

You ain't never gonna keep me down.

Can't say I'm exactly enjoying the ride, but I'M STILL HERE DAMNIT.

--

(PS The other good thing about the loud screaming is that it might actually help me in nightmare land – I often find myself trying to scream in my sleep but unable to make more than a squeak, if that. Now I know I'm capable of making a racket (albeit a non-neighbour-disturbing one) I might be able to get out of some of the nightmares (because, yes, it also hurts in my sleep). Yay!)

Comments

[silverai.livejournal.com]

"fibromyalgia explains it all" is a faulty statement that seems to indicate fibromyalgia is a disease in itself rather than a default diagnosis when they can't find an actual disease or cause. As fibromyalgia isn't a disease itself, then I think it's worthwhile pursuing other possibilities that may be causing or influencing some of the symptoms that are currently coming under the fibromyalgia umbrella. It may come to nothing, but there's also a chance it could help.

I find it helps me to remind myself sometimes that fibromyalgia isn't actually a disease itself. For me, reminding myself of that shunts my brain into paths of thought that are more useful to me. YMMV.

My 5 cents.

[leecetheartist.livejournal.com]

We just bought a TENS machine - I have no idea if it would be appropriate or advisable, but you could give it a try?

[stephbg.livejournal.com]

I did try an electrical thingie (not a TENS machine) a few years ago and it did a bit of damage it wasn't supposed to do. I suppose it's long ago enough that I should give electricity another go.

[leecetheartist.livejournal.com]

Rob has tried it and so have I now...

It is interesting, I'm not sure it would be pleasant for you.

It has preset programs depending on what bodypart you put it on - back, neck, hands etc.

You can then adjust the intensity all the way from hardly-can-feel-it to horse twitching at flies, to very odd feeling spasms, to I wasn't inclined to push it past there, actually, which was about 6. It goes to 10 (it's not that special a machine, it doesn't go to 11.)

You have complete control of the machine at all times, one hand on the dial.

Then when the 15 minute or so session is over, you feel really relaxed. We've found that it obviates the need to take stronger painkillers the times we've used it. It's definitely arrested a migraine.

I'm not at all sure what it would do to you Steph, it might interrupt or exhaust out your own spasms... or it might hurt you, but if you'd like to try it we can bring it over at your convenience.

[redbraids.livejournal.com]

Not useful, but only to say that I am so very sorry you go through this. I am amazed that you can still type.

[transcendancing.livejournal.com]

I'm so sorry that everything hurts so very much all the time and that you've lost the imagining tool.

Would you be interested in skyping sometime soon if you have the energy?