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Tuesday, 7 August 2012

Hypermobility Syndrome II

So as promised, today's post is about ways in which my problems affect me daily. At the end of each explanation I'm going to give a pain rating out of 10. I know this is long, but please take the time to read it. I'm not after pity, but am trying to get the message out that this is a serious condition, and we sufferers are not just lazy, we are fighting constantly to do anything. Every action has to be considered to see if it will take too much out of me to do the rest of the day's tasks. A great explanation can be found here,The spoon theory

When walking I am at constant risk of my ankle popping out of place. This movement as it pops is horrid to feel and the pain is incrdible. Trying to put the foot down before I've managed to pop it back into place is excruciating. 9/10 while popped, 7/10 for next few hours.

While doing anything involving my hands the knuckles often dislocate. This hurts at a 6 or 7, and the first few times a day doesn't hurt too much when fixed, but over the day builds to a constant 6 or 7.
My thumbs are more painful, popping at an 8/10 and staying that painful. This means I have to be careful lifting a drink, carrying my dinner to the table, braking too hard when riding.

Similarly many actions involving the hands bend the joints backwards. If I'm exerting pressure through the joint which flips backwards it's very painful, this is a pain which builds quickly and dissipates slowly. Combined with the dislocations its a large part of why I struggle to knit/crochet these days, and why I prefer chopsticks over a knife and fork. 7/10

Due to the lax ligaments, I have what is known as knock knees. This means that if my thighs are parallel, my calves are pointing away from each other slightly. This causes my patella to skip out of the groove it's supposed to slide in. The actual popping out of the groove isn't very painful, maybe only a 3. The problem comes when I bend my knee while it's out, as it cant slide it sits still until the ligaments reach their maximum length causing it to jerk back into the groove, that's a 6-9 depending on how strained it got before jerking into place.

Moving my arms at all is a problem, as my shoulders are regularly out of place. Often as I lift something it pops out, or if it was out pops in. The strain on the structures of the joints is causing damage. The longer it goes on the higher the pain, it's a constant 5 minimum, often a 9, with pain which radiates through my entire arm. When the shoulder subluxes it puts pressure on the bones of the upper arm, which pressurises the elbow, twisting the bones of the forearm, until it starts to cause problems in the wrist. 9/10

Sneezing is incredibly painful. It causes my spine to pop and crack against itself and the ribs, and often damages the cartilige holding those ribs in place. 10/10

Simply breathing is also a problem for the same reasons. The joints holding my ribs in place are damaged as the cartilage isn't up to its job. The ribs therefore move where they shouldn't and the muscles get damaged trying to take up the strain. 4-8.

As a general problem, my ability to move too much causes the facet joints of my spine to compress and slide against each other a lot more than is normal. I am in permanent back pain from the combination of inflammations in my vertibrae, ribs, and the connective tissues/muscles jointing them. this varies from 6/10 the moment I wake to 10/10 when I 'm in bed crying.

Laying down to sleep is a real problem, by laying i'm putting pressures on my shoulders and ribs, if not situated properly a subluxed shoulder being laid on is extremely painful, so I have to work all my joints into place as best as I can everytime I want to lay down. The ribs exert pressures on my spine, which feels like it is being ripped open and bent at funny angles, though i'm pretty sure nothing like that is happening, it just hurts like it is. It also exerts pressure on the sternum, which cant flex with it like the spine, so the ribs tear at their cartilage and the muscles over it instead. Laying down to sleep is always an 8-10, and is the time of day I take most painkillers. I will often take codeine, wait an hour for it to kick in, get 1-2 hours sleep, then wait 1-2 hours to be able to take another dose, and manage another couple of hours of sleep. So to get a good sleep i'm in bed for far longer than is normal. If I have to be up everyday, like i did in uni, I have to exist on a maximum of 2-4 hours a night.

There's also the problem of chronic fatigue. Even before the pain got so bad I can't make it more than a couple of hours asleep at a time, I was exhausted. This kicked in 7 years ago, in which time there have been 3 mornings I've woken up feeling good. Everything is a battle when you wake up feeling like you haven't slept.

An interesting problem we bendies have is that we tend to have odd reactions to painkillers. It may take 6 injections of anaesthetic at the dentist to work for example. Personally I have a problem that I don't get a great deal of pain releif from tablets, but I do get the high to an extreme. I take codeine to manage my pain, 15mgs to take the edge off most pains but leave me lucid enough to get on with tasks. 30mgs will knock an 8 to a 6 but leave me very high, and somewhat struggling to function. If I'm at a 10 and trying to sleep I will take 45mgs. It's not so much that it deals with the pain, it only sees to knock it down to an 8, but it makes me so high I don't really care. This was the problem I had when I was taking tramadol. I got no pain releif from it, but even the lowest dose of it made me totally whacked. I couldn't focus, I was giggling at the ceiling as time just flew by unnoticed. I was useless, but at least I wasn't feeling the pain. I stuck it out for a couple of months while I got used to being in pain all the time, then stopped taking it. I made the decision to accept being in pain over being stupidly high all the time. A lot of days go by where I don't take any codeine, it's not to say that I'm not in pain, i'm often crying with it, it's just that I need my brain for something. Those days consist of being in bed all day though, no way I can get up and move around without being sent into too much pain. I hate being relient on painkillers, i especially hate how they take my brain from me. However it looks like this pain is here to stay. So I should probably just take that 15mgs every 6 hours and accept that it's now a part of my life.

2 comments:

  1. You poor thing. How in earth did you manage as a child in pe lessons and more importantly day to day life? I have 3 sons and all of them have hypermobile joints in varying degrees. All struggle with writing and one to the point of being assessed as needing a laptop in high school. He also isn't allowed to do any upper body contact sports at school because of his shoulders risking popping out. Lower body is a bit less flexible so we allow him to do lower body contact such as football.

    I found the ot department most helpful in finding ways to help. I don't know if you find yourself leaning when you sit down but my boys do and they provide special chairs and cushions to aid this. Obviously mine have kids ones but I would imagine they do adult sized ones. Two of my sons have knives and forks with special grooves for the forefinger that help wonders. They definitely come in adult sizes. Even grips for pens to make writing easier.

    Hope you get the diagnosis you are searching for.

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  2. Hi kerry.
    PE was a nightmare. I had so many injuries which noone beleived me existed, so many detentions served for "faking injuries" because of course there's no way a child has joint issues.
    Writing has always hurt like hell, but again was never taken seriously when I complained. I now do almost all writing on a laptop which is much better, though I also have much less to write now.

    I'll have to look into that cutlery, would be lovely to eat without injuring myself. I'm always propped up on different cushions to hold me in a position which isn't popping something, being a knitter has really helped for that, i can have the exact cushion i need cheaply. Does get funny looks when you take a cushion to a lecture but helped a lot, wish i had it in school.

    Just today i've got a referral to a rheumatologist to get a firm diagnosis. :D Fingers crossed

    I wish your sons the best of luck, starting to look after their joints young will really help them. They are very lucky to have support through school. I'm so glad people are starting to take it seriously when kids have hypermobility problems. Hopefully they won't fall apart so badly as they grow up knowing they have to be careful. (^_^)

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