Sunday, February 10, 2008

Pain (Warning: dull alert)

Elizabeth wants to know about my pain. I think the woman is very weird for asking, but since it's just about all I can think about today, I will tell her about it. I feel bad writing about pain here, which is why I usually try not to, because I really don't have the pain levels that I know a lot of people live with. For me, it would be like talking about days when I feel a bit down as 'depression' - I don't do it, because it would irritate people with real, current mental illness. But I've had a request, so I shall comply. Everyone else, feel free not to read - this is only going to be boring with a touch of self-pity.

EDS pain is apparently a bit unusual (I wouldn't know - it's the only type of pain I really know about) in that it's both chronic and acute, and can come from several different sources. For me, the most common of these is joint pain, but if I understand correctly, it will be different for every EDSer. My joint pain then comes in two flavours. There's the sudden, pretty awful shooting pain that tells me I've either subluxed something or hyperextended it too far. That happens a lot. And there's the all-day ache where I've overused something, or where a subluxation has hurt it. My shoulder was doing this yesterday from sleeping funny on it. My knees do a fun combination of these two a LOT, often when I'm trying to sleep. Gets boring. Cold affects this. I wear a lot of clothes and have the heating up higher than most people (yes, I know it's not good for the environment). Too much movement affects it too. Wheelchair is about the only thing that helps.

Then there's the muscle pain that I think of as Fibromyalgia pain because it's related to that particular diagnosis. Unlike the other types of pain, which I had all my life but which have got worse over the last few years, this arrived really suddenly when I had the post-viral thing that kicked everything else into a higher gear. This is a bad, constant ache that feels like the muscle sheath is being *pulled* very tight all the time. It can get really distracting. I get a lot less in my upper body than I used to, thanks to Lyrica (my miracle drug), but my legs can get quite bad this way. Recently they've been killing me. I do not know why. There's evidence to suggest that this part of my pain is mainly neurological, as FMS has the effect of making people feel this sort of pain more. So when my joints hyperextend, as they've been doing for 29 years or so, the cumulative effect on my muscles is then felt more strongly because my brain is confused by it all. That's my interpretation of the theories, anyway. Heat packs, hot baths etc help this. Cold makes it intolerable.

Finally there's the 'miscellanous' EDS-related pain. Headaches are in one category. Nearly-daily migraines are currently driving me completely round the bend, mainly because, if I have even a hint of a migraine headache, I can't take my painkillers for joint stuff, or the migraine will be truly horrendous and I'll be throwing up for hours. (This is why I was hoping the pain specialist would give me some solutions that would work for both general pain and migraines. She did not. She is stupid.) Another category is nerve pain. I used to get this more before I was taking the Lyrica. Tends to be shooting pain down a nerve that I've either trapped or irritated. For this reason TENS machines are utterly useless to me (irritate the nerves further) and acupunture hasn't always been a good idea (although I plan to give this another try, as I've been referred for a course on the NHS).

Then, as I was attempting to explain to Esther last night, there's the stuff that isn't quite about pain but is somewhat related to it. A lot of my mobility issues are about this sort of thing. My joints are weak and 'go' underneath me rather regularly and unpredictably. I have poor balance. And there's the fatigue, which I believe is related to my rubbish autonomic nervous systems (basically, EDS-related heart problems that fall just under the radar. I need tests soon). And other related things that I could explain if I had more time, and if anyone reading this was remotely interested. But I doubt anyone will be.

There you are. I did warn you that was going to be dull. Happy Sunday, all. I'm off to a Quaker meeting. Cool.


Elizabeth McClung said...

Thank you - that wasn't dull to me at all but really, really facinating. I have heard medical professionals say that fibro is a form of nerves being unable to STOP sending information (like pain) - is that consistant, as it seems to be with what you describe here.

Also, because of Marfans I have hyperflex, like I can't ski becasue my knees will bend backwards because there isn't enough muscle support but that is super painful in the muscle, but what you describe is in the joint, yes? Also, how much do things like, sitting in cramped pews or sleeping too long on one side affect the EDS, if you don't mind me asking? Does the subluxation build or go at once. I am going to read more about this.

I am VERY sorry about the migrane and the vomiting and meds which sounds like Hell's tightrope. I am going to look up Lyrica, I know Milaciprine. Also odd how TENS machines are all over there and here, I can't even find an RN or caregiver who has heard of one. Thank you for telling me about your pain, I have a better idea of what you have to think about, judge, determine, look for signs regarding and be aware of WHILE you are trying to do....LIFE. So thank you, I am interested. I can't know what it is like, but I am interested (and I do care, I don't have the magic wand but I do care).

Lisa said...

I feel bad writing about pain here, which is why I usually try not to, because I really don't have the pain levels that I know a lot of people live with.

I think that's kinda rubbish.

One thing you can never compare with someone else is pain. No 2 people feel it the same.

You could have 2 people with 100% identical injuries, and both of them would experience pain differently. Some people have very high pain thresholds, some people have very low pain thresholds. Some people have the psychological ability to cope with pain, some don't.

And it even varies within one person. I can psychologically deal with the constant pain in my ankle, no problem, it doesn't bother me. But when I injure a different body part it often gets me down because it's something I'm not so experienced at dealing with.

So, yeah. Saying you can't moan about your pain because you perceive it as being less than someone elses is twaddle.

And, besides. They've probably got cooler drugs than you.

yanub said...

Ooh, the nerve pain. The excitement of suddenly feeling like you must be spontaneouly combusting. The inquiries of companions as they watch you yelp and try to claw out the offending burning nerve. The assuring everyone that everything is just fine, only to have the same thing happen repeatedly over the next 10 minutes. I am so glad it only happens to me sporadically and in a limited way, because I think I would go completely around the bend if I had to put up with it all the time.

Anonymous said...

No one will understand until they go through similar situations.
Pain affects so much of your lifestyle, sometimes it's hard when people have no idea and tell you to just get on with life.. How frustrating that can be.....

Undiagnosed Illness

Laurie Ashton said...

Yeah, I feel your pain. Literally. I also have EDS and today, it's the shooting nerve pain that's the worst. Think I could dig it out with a knife and be done with it? ;)