PAIN AND COLD AND ARTHRITIS.

It's gone colder and I hurt, some people say it hurts more in colder weather when you have arthritis, some people say damp weather makes the pain kick in, but to be quite frank I can't say I have found my pain getting any better when the warmer weather arrives, I just feel pain all the time, no matter what the weather is doing outside. My pain increases when I overdo things, when I attempt to walk even short distances, when I sit for too long without changing position, particularly if the seat is not comfortable for me in the first place! I find the key is to pace myself, though it can be hard to recognise when you reach that point of having done too much, you often don't realise it until you have gone just a little bit further than you should and then it kicks in, ouch I must stop, but now I can barely move to get myself to a place where I can rest and be slightly comfortable. If a job needs doing, it's difficult at times to stop in the middle and think, I must rest, I must just sit down for a while. If you don't you know very well you will pay for it, but it's hard to just drop everything and stop what you are doing, and often very frustrating! I have been known to overdo it, not pace myself correctly, and not particularly pay for it the same day but the following day I can barely move and my energy has deserted me. Maybe it's adrenaline keeps us going at times we need to keep going, then when the body knows it can relax it gives up and won't let you do anything until it recovers slightly. I'm not talking anything in particular here, it might be the family round to visit and you make cups of tea for everyone, not even a meal together, and it will prove too much. It depends what you are capable of in the first place. To some people even just making a sandwich or a cup of tea is a big deal and requires more energy and physical ability than they have. One person's pacing can be very different to another's, same as one person's physical capabilities can be vastly different to another's. One problem with ehlers danlos hypermobility syndrome is that it is invisible, and even though a person may look fine to other people, that person may be in great pain. Your knee can just give way without warning, your hip can slip, and I can tell you that really hurts, your ankle just goes from under you causing a stumble, your back can lock, your jaw can get stuck if you open your mouth too wide to yawn! All kinds of weird and wonderful things can happen if you are hypermobile, it might be a good party piece when you are younger to be able to do the splits, but the consequences can be awful when you are older and your hips cause so much pain. It can be very difficult when your hip slips when you are walking along, this used to happen to me frequently when I was at school, I could do nothing to prevent it, I would just fall to the floor, the pain is excruciating. When your ankle gives way beneath you when descending steps or stairs and you fall from top to bottom the effects can be devastating, you can knock yourself out, break a bone, or even fatalities have occurred in people who have fallen downstairs, I hang on for dear life these days if I can't avoid steps or stairs! Loose over worked and over used joints can lead to arthritis as you can imagine, after all if something gets pushed and pulled around more than normal, it will eventually give way, or even break, so you can see why arthritis kicks in, and in a person with hypermobile joints it can start much younger than other people, I started with arthritis in my thirties, now two years off 60 my walking ability is severely restricted, I can just about potter around in the house, to get from lounge to bathroom, or into the kitchen for a drink, but I use a mobility scooter, or as they are sometimes referred to as a self propelled motorised wheelchair to get out and about, an aid I did not want to resort to but the pain was so all consuming before I gave in and started using it, my life was so severely restricted I was stopping in the house much more than was good for me, and I needed my independence. I still have pain, every day, but at least I can now cope a little better with my pain levels than I could before.

Its just such a rush sometimes.

Some of you who have ehlers danlos syndrome, whether it be the hypermobility type like myself, or one of the other types, will have experienced the embarrassing problem it can cause with toileting. Whether it be a sudden uncontrollable urge to "go", the onset of pain which can predict the need, the feeling of sheer panic and "will I make it in time?" This might happen on the odd occasion or it could be almost every day. Whatever happens, and however it happens to you, it can be, and probably is, so embarrassing you can't speak about it. I am cringing just writing it down here, I certainly couldn't give it voice and say these words out loud, not even to a good friend or doctor. It could get worse depending on which foods have been eaten, or you may have no idea what triggered the latest episode, I have discovered that peas, beans, sweet corn, onions, to name but a few, are now permanent "no no`s" in my diet, the pain and suffering after eating these foods can be terrible. Stress is another factor, however much I try to stay calm it's not always easy, certainly easier said than done, and if I get too stressed and it brings on an attack it's difficult to deal with. I am of course talking about ibs, irritable bowel syndrome, which seems to go hand in hand with ehlers danlos hypermobility syndrome, at least it does in my case. It's not just the pain, and the diarrhoea which is the problem, at least for me, it is the urgency, the feeling you won't be able to hold it, the fear of an accident. I think this may be due to the lax muscles and ligaments within the body, those tissues which are meant to hold things in place being weakened by the connective tissues being different in someone with this syndrome. Having arthritis too, and the associated pain that goes with it, walking is hard for me, and walking fast enough to get to where I need to be is such a huge issue, causing untold misery. I shall leave it to your imagination, believe me you don't want me to elaborate. Ehlers danlos hypermobility syndrome is invisible, it is multisystemic and complex, I walk, the little I can manage these days, with a stick. I use a mobility scooter to get around, I hurt all the time, both physical and mental, it's not easy to live so restricted a life. I often feel exhausted, whether due to the struggle my body has to function each day, the pain I suffer, or the inability to sleep soundly for long, or a combination of both. If you have the same, or similar problems as myself, whether it be eds, or ibs alone, I hope you feel just a little better knowing your are not the only one, and that someone else knows how you feel. Oh and loperamide has come to my rescue, more than once, now I couldn't do without it. I'm experimenting with a stress ball too, you never know, worth a try. 

Problems with bendiness.

I discovered, much to my amazement, and that of my teacher, that I could do splits at the age of five. We were in gym class and the teacher asked if anybody could do splits so everyone started to slide their legs outwards from the hip. The teacher put up her hand and called, no you slide one leg in front and one behind you, so we all started to try splits the way she told us and to my amazement I slid smoothly to the floor! The teacher looked at me with an amazed expression and said "did you know you could do that?" I shook my head, no I had no idea.
Of course I then discovered I could high kick, I could bend and touch not only my feet but the floor without bending my knees, and I could wrap my legs around my neck. By the age of nine or ten I was having trouble with my knees and hips, my hip would slip as I walked home from school causing me to fall to the pavement with no warning, and my knees would swell, which according to my doctor was housemaids knee ! He advised mom to bandage my leg from wrist to ankle and I was sent to school hobbling painfully, stiff legged as the bandages were so tight I couldn't bend my leg! Presumably it was meant to push out the fluid on my knee but just caused me great embarrassment and pain.
When in my twenties the back pain began, getting worse when I fell on black ice one at on my way to work, causing me to hobble painfully home, I later learnt I had ruptured two discs.
I managed for a while, I had physio and ended up at a back pain centre in a hospital in Manchester for three weeks. I learnt relaxation and pain coping techniques, and got back to work for a while.
Arthritis started to complicate matters, degenerative disc disease not helping and an unstable spine and knees which bend backwards contributed to my problems, and though I tried to keep going the pain often gets too much for me. I use a mobility scooter these days, I fought against it for a long time, especially as I was diagnosed with osteopaenia a couple of years ago and walking andk exercise keeps bones strong, but constant pain was wearing me down, walking was too difficult and too painful for me, using a mobility scooter gave me my independence back.
It's been 52 years since I found I could do splits and it was realised I am hypermobile, once the pain came it was hypermobility syndrome, now known to be the same as ehlers danlos type 3, perhaps if my doctor had even heard of this debilitating condition years ago I might have been treated differently, who knows.

Standing, walking. Wish I could!

Just been out for lunch with an old friend at a local garden centre, and although I was walking with a stick and mentioned that I have just had a mobility scooter because I cannot walk far or stand for long we still had to walk around the pet section where she looked for ages at the many things you can buy for hamsters nowadays because she has decided to buy a hamster for her daughter as a surprise for Christmas but has not yet bought the actual hamster! She bought things for it to chew on, a ball for it to run around in etc., so hopefully she will definately buy the hamster before Christmas now! I was already struggling just walking around the small pet section and standing for too long while she cogitated on which chewy thing to buy then on the way to the till to pay she decided she needed to use the toilet and left me standing next to her basket of hamster related goods while she skipped off to take advantage of the facilities which was not the best idea for me as just standing really hurts. So there was I, swaying from one side to the other wishing she would hurry up! Its true what they say, ehlers danlos mobility syndrome is invisible, even though I use a stick and walk relatively slowly it seems to go unnoticed, and I don`t like to make a fuss and say I am struggling so I suppose its my own fault as I suffer in silence. Its not even as though we were walking around for very long, but just a few minutes is often enough for me, it certainly was today, and the arthritis in my spine was causing, and is still causing, lots of pain. Its good in one way that people treat me as they would anybody else, but on the other hand when I am struggling it would be nice if, just for once, somebody noticed!

Pain in the side.

I don`t know if it has anything to do with my hypermobility, and ehlers danlos, but since about 3.30 yesterday afternoon I have been in agony!
I started having twinges in my left side, round about the area which would coincide with the bottom of my rib cage. The twinges got more and more frequent, and more and more painful, during the evening and by mid evening I was in agony with sharp stabbing pains every few seconds which made me wince and jump. The area was also very sore and tender to the touch and I could not even bare to have the material of my clothing next to the area so painful was it. The whole of my left side, from breast down to hip, radiating slightly round to the front and back was very very tender, though nothing was showing on my skin, no redness, no rash, no apparent swelling, yet I only needed to touch it and I jumped with pain. I tried to concentrate on the television, though I could not get myself comfortable, and by ten o`clock the tears were streaming down my face even though I attempted to stop them, the pain was just so fierce I could not bare it! When my husband realised how much I was suffering he brought me painkillers and a wheat bag, hoping the heat would help. I was wary about putting the wheat bag near to the tender area and I very carefully placed it as close as I was able, it took about an hour and thankfully the pains began to subside a little, soothed by the heat, or by the pain killing medication, perhaps both I don`t know, I was just glad the pain was a bit better! Eventually I decided I had to try and go to bed, reluctantly as I could not see how I would be able to sleep if the level of pain kept the same and I had to ask my husband to warm up the wheat bag once again. I laid it on the mattress and flattened it out, then carefully lowered myself gingerly on top of it. It took a while but eventually I managed to get a little more comfortable and I did drop off to sleep, though waking a few times in the night with the stabbing pains. I woke early this morning because of the pain and carefully got dressed and I have thought it best to rest today as moving around seems to aggravate it.
I have no idea of the cause but wonder if it has anything to do with my hypermobility and ehlers danlos, as I can move in a certain way and my ribs seem to dig in and hurt me. I have had something similar to this before, but not to this extent, not so long lasting and painful. Hopefully it will right itself, I don`t fancy yet another trip to the doctor!

Is it great being hypermobile? No really.

Over the years I have had problems with so many of my joints, I score top marks on the Beighton Scale, it seems that most of my joints are loose.
My ankle is so painful at the moment, it came on yesterday suddenly for no reason whatsoever, one minute it was okay, the next I could hardly put my weight on my left foot. The ankle has been clicking for some time, and I have had many times when pain has started in the ankle for no reason over the course of many years, but this time the pain radiates up the lower calf and I get a shooting pain when I put weight on it. I have put my magnetic support on which normally works in a few days so I am hoping it will take the pain away, though as yet it has done no good at all. I am barely able to hobble and am slightly worried that this pain is not the same as I usually get. I have noticed that in the last few months the pain, when it comes, lasts for longer. At one time I could put the strapping on and it would subside within 3 or 4 days, but it has been playing up a little for a fortnight now and keeps getting worse each time it returns. My GP said he cannot give me any different anti inflammatories or pain killers so he seems to have given up and I don`t quite know what to do, or where to go for help. I do find that if I have pains in one or two joints it makes me walk slightly differently to compensate for the pain site and then I subsequently get pain in a different place because I am moving my body in a slightly different way or position.
I used to think it was great being hypermobile when I was younger and my party piece was to do the splits, high kick or wrap my legs around my neck. I now hate being hypermobile as I would not be in the physical pain I am suffering now if I weren`t.

Sleeping, or not.

I have not been sleeping well lately, things on my mind but also I have not been able to get myself comfortable. Lie on one side, hip displaces slightly, pain. Turn over, shoulders ache then hip begins to hurt. I can`t win. I lie in the dark trying to still my mind, make my mind blank but then I have to turn over because my knee hurts and my back has gone into spasm. He snores loudly beside me and I despair of getting any sleep. I hear his alarm go off at 6am and groan, I can`t remember being asleep yet and it is almost time to get up.