Hi, not sure if I belong here (long post warning!)

[mcbeauty]

Hi,
have been reading the posts and info on this and a couple of other sites on HMS/EDS for a few weeks. I came across it almost accidentally. I have been having trouble with my shoulder and neck (well, had trouble for years, but decided to do something about it!) I knew from my chiropractor that I ahve a hypermobile shoulder (and hips, SI joint, spine, neck) and he is always telling me that I need to exercise, swimming or Pilates to strengthen the muscles to hold everything in place, so I googled "Hypermobile Joints" to see if I could find some good exercises to do specifically for my shoulder and came acorss HMS. I had never heard of it before at all, I found a good site that gave a lot of detail about some of the autonomic nervous system symptoms too and was amazed as it seemed like they were talking about me! I'm not often ill and so couldn't undertand why I seemed to have had several chronic problems at different times in my life that seemed like they were completely disrelated yet were all detialed in the symptoms of HMS/EDS.
Anyway, the reason I'm not sure I belong here is that I'm really not that bendy (only score 2/9, palms flat on floor and fingers on left hand bend back 90 degrees), however as I said my chiropractor has told me that my hips, shoulders, spine and SI joint are hypermobile, and possible ankles a little, but elbows and knees are fine, although I do get a little pain in my knees sometimes.
I do however have other points on the Brighton criteria, namely pain in several joints for mroe than 3 months although not very badly except for shoulder. I believe my SI joint has subluxed several times and may have dislocated shoulder as child and one of my hips used to sometimes "go out of place", it could be felt slightly on the outside of the joint but could still walk etc. but a bit painful until it would pop back in. I also have varicose veins, haemorhoids (sorry if TMI) and a bladder prolapse and slight uterine prolapse (after 2 pregnancys, again sorry if TMI!)
I thought back through my history and spotted so many things though, however as my Mum was a doctor, never saw anyone else about any of them.
As a child, up until about the age of 10, I would often get very faint when I stood up from a chair and would often have to sit back down until it passed and then stand up slower. I very rarely have this problem now though, but I do have low blood pressure (which is what my Mum put it down to) especially when pregnant. During my last pregnancy it went down to 90/55.
I also had reflux until the age of about 10. I used to get very sharp pains in my chest which my Mum said were crmaps not in the heart muscle itself but in the muscles around the heart. My Dad says he thinks (I only saw him once a wek, he didn't live with us) that he thinks I dislocated my shoulder once as a kid and I can remember having various sprains and strains of ankles and wrists, though it didn't seem more than normal. I also had flat feet and had to have orthotics in my shoes to correct it, they're still pretty flat now. I pulled both my achilles tendons at the age of about 11 (running in a race at school) and they were painful for weeks, my Mum took me to see another doctor and they were considering injecting them with steroids.

Most of these things as I said went by about the age of 10 and I then had no real problems until my twenties when my neck and shoulder on one side started to be tense and sore. It wasn't bad at first but has got worse over the years (I'm now 37). When I was in my early twenties I strained both wrists quite badly by carrying bags that were too heavy on seperate ocassions and couldn't straighten one of my arms for about a week and then had numb patches on the inside of both arms that took about a year and a half to get nearly back to normal (still some loss of sensation there).At about the age of 26 I started to suffer from what appeared to be sither Superventricular tachycardia or atrial fibrullation. It would come and go but at it's worst would be several episodes a day of a very fast heartbeat that would sometimes last about 5 minutes. It appeared random as to what would trigger it but I did notice that I kept getting it in changing rooms and realised after a while that it was lots of bending down and standing back up fast that seemed to sometimes set it off.

Another thing is I have always had VERY cold hands, even in warm weather, and get cold if I sit in one place for long (like at the computer!). I also don't tolerate heat well, mostly if I have to stand in one place for long such as in a queue or on the bus. Don't like it anyway but causes me problems in hot weather, get breathless and body feels panicky after a while if I don't get to sit down. I aometimes stop breathing in my sleep and wake up knowing something is wrong and suddenly realise I'm not breathing and have to take a couple of deep breaths. Ocassionally "forget" to breathe when i'm awake too!

I didn't go to the doctor about the wrists as I just rang my Mum (we were living in different countries by then) and she said it just sounded like pinched nerves and would get better. I did go to the doctor about the heart thing and they were goign to do a recording but my Mum died and I had to go to Ireland for the funeral and to spend time with my sisters and so didn't get it done. It calmed down a bit after that although would sometimes get worse again but I didn't really want to end up having to take drugs or something and didn't feel it was life-threatening so didn't go back to doctor (I tend to avoid them anyway!)
Anyway, no other problems then, apart from the niggling shoulder until I was pregnant with my second child at the age of 34. I had a lot of pain in my foot in the last 6-8 weeks (think it may have been plantar fasciitis). This caused me to limp a lot, which got worse and worse and then put my hip out (was told by an osteopath friend and later my chiro that it actually put the SI joint out on left which then caused misalignment and pain in hip on right) and caused a lot of pain in my knee. By 2 weeks before my due date I could no longer walk. I called the doctor and said I needed to get some crutches. They told me I'd have to go to the hospital to get some, that I'd have to make an appointment with the physio and it would take at least 2 weeks! I explained that that was too long as I couldn't actually walk but they were pretty useless so I borrowed some from a friend who had polio as a child and had 2 sets. Called my friend who was an osteopath and he told me it was the SI joint but no manipulation of it would be possible by him or a chiro until after the baby was born. So hobbled around, hoping that after the birth all the ligaments would snap back in place and it would just go away!
4 weeks after my daughter is born, still couldn't walk, had to use crutches literally to get from one room to another and had to crawl up the stairs. Luckily my husband is self-employed so was able to take time off to help or I don't know what I would have done with a newborn baby! One day I was lying on my back on the bed and got stuck, I couldn't get up as it hurt too much, hubby nearly had to call an ambulance as he didn't know how to get me back up again! Finally managed to find a manouevre that allowed me to do it although it hurt like hell. A few days later the joint just totally went and I literally couldn't move, just stand there crying and shouting with pain. My husband had the baby who was also crying so called a friend to help out. It eased enough or went back in place enough that I could move and I had made an appointment to go to the chiro for the first time that afternoon so we got me there and after 2 visits it was a good deal better although still couldn't walk properly for weeks.
Kept up the visits to the Chiro to see if it would help my shoulder as I knew some of the problem was my neck and I was getting migraines of increasing frequency that I thought were also down to my neck. He said that my spine was hypermobile but in good shape, it was just either end of it at the neck and pelvis that there were problems. He got rid of the migraines totally (big relief!) but nothign he did ever really helped the shoulder. My pelvis and SI joint were a lot better but still misaligned, he'd keep putting them back in place (he said the SI went back in very. very easily) but it was still never quite right and would go out of place within days again.

I also discovered that I had a prolapsed bladder and a slight uterine prolapse but not causing much problem and didn't fancy surgery. Funnily, when I went to see the consultant, they sent me to a physio to see if more pelvic floor exercises would help at all (I had done them faithfully and she said they were already very strong and keep them up to prevent future problems but wouldn't help situation as it is) It came up that my hips and SI joint move around and she said that if I had hypermobile joints that was probably why I had a prolapse, that it's a risk factor and is caused by faulty collagen. That was all she said and as I didn't know anything about it I didn't take much notice.
I found that since that pregnancy I couldn't stand for long periods or walk for long periods as all my hip and leg joints would ache a bit and feel "tired", also noticed I felt very physically tired in the evenings. I put it all down to having a baby at a slightly older age than my first (10 year gap) and thought it would all improve. 3 years down the line was still waiting! About 6 months ago noticed that my legs always felt cold, especially down the backs when I was sat down. At first I thought it was draughts in the room, but notice it happened everywhere I sat and as it got worse it was obvious it was actually nerve trouble, particularly down the left leg whch then turned into sciatica. The chiro hasn't been able to do much about it, although it's not too painful now, just really annoying sensations of tingling, numbness, and sometimes pain. Also, my foot which was on the clutch when driving would sometimes get numb when sat in rolling traffic where had to use it a lot.

Last year I stubbed my toe really badly and it seemed like it might be dislocated. I went to A + E. Examingin it the nurse said it wasn't but then noticed that there was a hard white bump under the swelling when I stood on it so sent me for an xray. It wasn't dislocated but they did find that I had an arthritic spur on the side of that toe which was what the lump had been. That toe has never caused me any trouble (although I do sometimes have to pop other joints further down my foot, especially after wearing heels, used to get a lump of bone pressing through the bottom of my foot and would have to bend it the other way with my hand until it clicked back into place) and overhearing 2 of the doctors talking about it seemed puzzled as to why it was there.

So, that's a lot of history, actually laying it all out like that and reading it I think maybe I do belong here! I don't have too many problems in present though, except for sore shoulder and tensed up neck on that side, and nerve problems in legs. Do get niggles in other joints, like wrist for last week or two when I use it certain ways like using a scissors (which I need to do for my work) and knee last week for a day or two going up stairs, and having to crunch my SI joint back into place and wiggle every now and then when driving as hips and SI go a bit wonky but nothing major at all, and nothing close to what some of you here endure.

Sorry for going on so long, just wanted to see what you guys thought, as feel like a bit of a fraud posting here as don't have many problems really. Was amazing to put it all together though and realise there may actually be a cause that covers all of it! Although it doesn't mean there's much i can do about it at least I don't have a lot of the autonomic problems anymore (such as the reflux and faintness on standing), now just want to get fitter to support the joints so don't end up with more problems in future!

[Lauren]

Hello!

I would definitely go to your G.P. and ask them for an official diagnosis. Even if you've had physio before, they might be able to refer you to a physio or consultant who can give you advice. You might not be having many serious problems now, but generally with HMS doing regular physio exercises is the best way to prevent any future problems. There's lots of exercises you can do for your shoulder, in particular.

[tinselworm]

Goodness. Apart from the pregnancy part, your story is almost identical to mine, to the degree that I read it with my jaw on the floor (and not just because it's hypermobile!)

I'm new here too after only just discovering this about myself in my late 30s (just turned 40), funnily enough after an SI joint injury,so I'm afraid I don't have any useful words of advice but I'll be watching your thread closely because, wow, the similarities have just knocked me for six. So yeah, I'd say you belong!

Also wanted to let you know you very much weren't alone

[mcbeauty]

Thanks for the replies.
Tinselworm, I had a look at your other posts and I see what you mean about the similarities! Thankfully I can now walk fine etc., though still feels a bit wonky, I only had to use the crutches for 2 or 3 months, sorry to hear you're still having to use them. Also thankfully I don't have much of the funny heart stuff now, only happens very briefly maybe once a week or so, and no trouble with pre-syncope on standing unless I've been crouched down low for a while, looking at a lower shelf in a shop for example, and I think that's fairly normal, so I hope yours improves too.

Lauren, yes that would be the only real reason I would be interested in being diagnosed, to find out what exercises to do for various joints. That, and so that if I have problems in the future they know what they're dealing with. However, I was born in Ireland and lived there until I was 19 and almost never went to a doctor as my mother was one. I then moved to the U.K., never even registered with a GP for 5 years until I was pregnant with my first daughter and tend to avoid doctors as I know there's not usually much they can do. I'm concerned that if I went to the GP for a diagnosis or referral for diagnosis they would be sceptical as they have no record of any of these complaints other than the heart problems and I never even finished the tests for those. In fact I didn't finish them twice, it came up in my last pregnancy as a past heart problem and as it had never got diagnosed the first time 10 years ago due to not finishing the tests they sent me along to a cardiologist. He did some tests including an echocardiogram and then wanted to do a recording. I didn't see much point as it doesn't happen very often anymore so unlikely to be captured on a recording and he also was not concerned about the problem. At my next appointment with the community midwife she mistakenly thought from my notes that he had discharged me and I just went along with that as wasn't interested in more tests and wanted to have a home birth (which I did) so I was happy for them to think it was finished with and I knew it wasn't really a problem anymore.

So, I don't know if they'd just take my word for it that these problems exist or not, and as my mother passed away 10 years ago she can't vouch for it as another doctor either. Actually, thats another thing that concerns me a little, my mother (who I suspect had HMS, she was an accomplished ballerina in her youth, always said how flexible she was, had lots of clicky joints and was diagnosed with chronic fatigue syndrome) died at the age of 54 from a cerebral aneurysm. In this article:
http://www.reumatologia-dr-bravo.cl/pat ... ectJHS.htm
Dr Bravo states that HMS does not cause cerebral aneurysms but that one of the things to look for in a patients family history is relatives who had cerebral aneurysms! As I have had and still have some problems that seem to be caused by "stretchy veins" I find it a bit worrying as a tendency to cerebral aneurysms can be hereditary!

So, a bit wary of going to the doctor but if things deteriorate may do.

[Lauren]

Good luck getting things sorted.

[barkingmad]

hello and welcome to the forum

The Beighton/ Brighton score is slightly flawed in that it doesnt allow for hypermobility in other joints..yet most good professionals will test other joints when examining for HMS's. In addition you can have just one HM joint and still have a full blown hypermobility syndrome, so I wouldnt worry too much about the 2/9.

hopefully this Sept will see some changes to the diagnosis criteria!

[mcbeauty]

Yes, I thought it was funny that most of my joints that move about are exactly not the ones they test! Testing spine and neck and SI joint could be a bit tricky for someone not very experienced with it, for example your GP, but I would have thought putting shoulders on there would be easy enough.

Mine aren't as mobile as some but I know from the chiropractor that my right one does not sit in place by itself so is straining the muscles around it and crunches, pops and clicks a fair bit, although the left one is actually the ones that's more flexible. I can reach any itch anywhere on my back and can link my fingers behind my back with the right one coming from above and left one from below. Can't quite fully do the "reverse namaste" (hands in prayer position behind back) perfectly but very close.

I had a look at my elbows in the mirror this morning when fully extended, I always thoguht they're not hypermobile at all and the chiro said they're fine but noticed that when fully extended the left one is slightly hyperextended (most of my joints on the left seem to be bendier than the ones on the right for some reason), but I don't think bendy enough to fit the criteria.

Does anyone know, if all the collagen in your body is faulty, why some joints are bendy and others not? For example fingers on my left hand bend back 90 degrees but on the right hand nowhere even close (although always previously thought that was because I write with my right hand so muscles are stiffer/stronger), my hips are bendy but knees not etc.

[isotope]

I can reach any itch anywhere on my back and can link my fingers behind my back with the right one coming from above and left one from below. Can't quite fully do the "reverse namaste" (hands in prayer position behind back but very close.

Would this indicate hypermobile shoulders? Those things are effortless for me but I always thought my shoulders weren't hypermobile - at least, they're about the only joint that never seem to cause problems. Actually, that's not quite true I had a 'frozen' shoulder for 6 months or so, but what I mean is I don't get things coming and going with my shoulder like I do with other joints.

Hope you get the answers you want from the forum, mcB. I'm pretty new here myself.

[mcbeauty]

Yes, apparently that means your shoudlers are hypermobile. I always thought mine were normal and wondered why other people needed help with reaching itches!

[Lauren]

All my friends can do the reverse namaste. Maybe it depends on how young you as to whether it is unusual or not.

[mcbeauty]

Most of mine can't! But they are mostly in late 30s or 40s.
I don't know for sure that that indicates hypermobility, it's just that I've been told by an acquaintance who's an osteopath and by my chiropractor that I have hypermobile shoulders and as most of the people I know cannot do those things or reach as far up their back as I can (can reach my neck from behind with hand coming from below) I assumed that that would be a sign of hypermobility, but I may be wrong on that. The osteopath did have me do a manouevre to test if they were hypermobile but I can't remeber exactly what it was, it was something very simple and easy to do and had to do with putting one hand or arm on top of the other at shoulder height in front of you or something, anyone know what it was?

[mcbeauty]

Oh dear, my little 3 year old seems to be having problems. As soon as I learnt about HMS and all the associated symptoms I thought of her as she has got bendy fingers (although I know hypermobility is common in under fives) and has really blue whites to her eyes, in fact they're not white, they're light blue!

About 5 weeks ago she had a virus and a couple of days after the fever had gone she couldn't walk, her legs just wouldn't take weight and she had to either bum shuffle about or have me carry her for a couple of days, she literally couldn't take a step. A week or two later she had ANOTHER virus and again same thing. She said her calves were sore and couldn't walk. I know this is common with kids after a viral illness, my older daughter has had it too, really freaked us out until found out it's common.

Now, weeks later thought the little one is limping and it's getting worse every day. I don't know if it's related to the viral thing or not, seems like too many weeks later and looks to me like a joint problem. Am worried she won't be able to walk at all if it goes on another week! I took her to the doctor and they want to give her anti-inflammatories for a week and see if that handles it and then if not refer her to a paediatrician. I'm not really happy with that as I avoid medication unless really necessary and there is no sign of any inflammation and apart from first thing in the morning she is not now complaining of any pain in her legs (she was when the limping started a couple of weeks ago). Any advice from anyone as to how I can get the cause found quickly within the NHS? I did want to take her to my chiropractor and see if he could handle it but he doesn't treat little kids but I may try another or an osteopath as I can see it trailing on for weeks otherwise and she literally won't be able to walk by then.

[mazza111]

Please don't think that because you can't see it, there is no inflammation there. I have OA, and think, oh I'm not swollen today, I won't bother with the Naproxen. Big mistake. Even though you can't see it there can be inflammation that's not seen and can cause pain.

As you've got some HMS problems, it might be better going to the doctor armed with info from the main site and asking directly to be referred to a Rheumy.

My daughter still hasn't been diagnosed officially even though her first major dislocations were around 13 years ago. When we asked the doctor outright for a referral to a Rheumy, she asked us to wait and see what the orthopaedic man could do first, if he can't fix her we're going to get the referral. Just waiting for June 19th to arrive and hopefully we'll know one way or another what's to be done.