Hi,
After a long series of various doctors who each had a say in what I was dealing with and a loooot of pain, i was diagnosed in February with HSD. I don't know anyone else with my kind of issues and I would like to communicate with other persons who have the same problems. The people near you can be as supportive as they can but at some point you feel alone and it's just you and the pain. Is this forum only for EDS or does it also cover Hypermobility Spectrum Disorder?
Thanks!
Hi - and welcome - it covers both. HSD is now being diagnosed when somebody doesn't have enough family history to get a hEDS diagnosis, or perhaps misses out on just one criterion. It is really the same thing - just that it has been recognised that there is a whole spectrum. What applies to hEDS applies equally to HSD.
There are a number of facebook forums which also support people with HSD/hEDS, so if you are not on fb, this would be a good time to join! You would be surprised - the main UK one has over 5000 members, many of them sufferers themselves.
If you have any questions or issues, the chances are that one of us will have it too.
Some people for all sorts of reasons don't want to be on fb - there is no limit though to how many forums you can be on, and you are still welcome on this one which keeps your privacy more...but there are tons and tons on facebook with all sorts of different focuses. I am on EDS UK (Ehlers Danlos Syndrome) for example facebook.com/groups/1451508...
but there is also 'EDS - Zebras need Zebras' which I think is mostly North America, and 'Hypermobility Spectrum Disorder and Hypermobile Ehlers-Danlos Syndrome.' which is UK based. The focuses of each group are tailored to their health arrangements, so the US ones have more on health insurance and problems with getting opioid prescriptions, while the UK ones have more info on PIP disability arrangements and getting somewhere with the NHS.
Each of the big EDS societies also run their own pages eg Ehlers-Danlos Support UK on facebook.com/EhlersDanlosUK/
There are some which are just about how to cope better with EDS for eg. facebook.com/groups/edslife...
There is now so much information out there. Only 4 years ago there was almost nothing!
And do people also share how they manage to push thorough the issues they have? I'm not from the UK but my physiotherapist is there and i visit her regularly. There are no doctors for my issue here and no support groups. I'm guessing most get wrongly diagnosed as I was in the beginning.
Yes - lots of people are going though the same issues you are. Sometimes there are no solutions - just as there is no genetic test for hEDS yet, and no cure - but it is good to know that others are in the same situation. For a 'rare' disease it is pretty common.
There are groups for MCAS and POTS etc and also groups for people doing the Muldowney physio protocol (as I am) on fb - Muldowney Exercise Protocol (Unofficial) facebook.com/groups/8709343.... It is worth having a good look around and maybe join a few but then see which ones are most useful to you.
The UK and US have the biggest support groups both online and as charities, so people from other countries tend to join them. There are a lot of them with similar names too - it can be confusing.
The best site just for information (no forums etc) is this one: edhs.info/home
which is fantastic.
Thank you! It's really like a breath of fresh air to see that other people have the same issues you do and that I'm not alone in this. This is amazing for me 
Do you need a special physio protocol? It might be a stupid question but does it matter with what kind of exercises you strengthen your muscles?
No you don't need a special protocol - any good physio will do fine. The best kind will be familiar with hypermobility issues and possible with EDS. The best kind of exercise for us will vary, but includes Pilates and Strength training. We should not run, and most cardio is not good for us.
In some areas you can self refer to an NHS physio. Unfortunately I have never found them any good but it is worthwhile trying to find a good one locally. I pay for physio because I would like to try returning to work sometime.
living life to the fullest with EHLERS-DANLOS SYNDROME by KEVIN MULDOWNEY PT
Exercises for you & instructions for physios not conversant with HSD & EDS.
Very important to find a conversant physio or one willing to learn.
connect with Inspire (EDS relevant blog. : it has many other rare syndrome categories) for much helpful info from experts as well as communication with other Dx people
Just typed most of a reply and lost it when mus have pressed the wrong button grrr! So this will poss be shorter but basically Welcome from a fellow newbie.
Only got official diagnosis of HSD couple of months ago myself - which stated hypermobility spectrum disorder (formerly known as hypermobility syndrome/EDS type 3) so they used to be considered to be the same and like Jay said although the diagnostic criteria has changed and it is harder to get diagnosed with hEDS, the treatment and advice is basically the same. I read somewhere that by reducing the amount of people diagnosed with hEDs by making the criteria stricter they were hoping this might help find out more about the genetic cause as they would have a smaller pool of patients.
Anyway I have found this forum very helpful and supportive as although I only just got a firm diagnosis recently I have known it was probably this for over a year, starting when a physio pointed out I had hypermobile joints back in late 2016. Like most people i found it can be a struggle to be taken seriously but glad to have the diagnosis now at least. And do feel some vindication that the letters EDS were even mentioned on the rheumatologist report as whenever I mentioned hEDS to any medical professional as a possibility they completely dismissed it as they seemed to only (vaguely) know about symptoms/characteristics of classical EDS (despite hEDS being far more common I believe) and was made to feel like I was plucking my own potential diagnosis out of nowhere. Whereas whether it's hEDS or HSD they are clearly very connected. Anyway hopefully knowledge in the medical profession will catch up eventually. Like I said I have found this forum helpful and supportive so I hope you do too!
Thank you for your reply I went through the same process as it seems almost all EDS patients so through. Going to countless doctors who don't really believe that you're in that much pain. At some point I started wondering if I was imagining everything or I was super sensitive or something. At one point, one doctor told me about EDS and that "you'll probably die in a few years if you have that". So yes, it's been quite a journey. How do you manage your condition? I'm not very athletic but I'm trying to exercise as much as I can now to strengthen my body.
It has been a fair bit of trial and error and false starts tbh. After a gradual build up of pain I started getting unexplained injuries about 2.5 years ago which prevented me from exercising whereas I had been fairly active prior to this so this won't have helped the situation as my muscles must have been weakening as I became less active and when I did try and exercise again it was usually with gentle running whereas in hindsight of course I should have tried something non weight bearing but at this time I was clueless as to the situation. Then when it dramatically worsened a year later I was unable to do anything pretty much at this point. Then when physio started it was usually a different one each time, with long waits in between to be re-referred or just to get an appointment and much of it was far too demanding on my joints in hindsight. Also I was set back by steroid injections in both knees last June which aggravated the pain massively unfortunately and also made me feel pretty despondent and helpless about the situation. It is only recently that I've been seeing a physio that actually accepts that HSD is a condition (unless he is just humouring me!) Which makes a big difference as he is much more patient and realistic about what I am able to do and how long it will take for even small improvements.
I am now doing far fewer physio exercises than before - about 15 mins per day rather than about 45 mins but I feel more like they might help as before I think I was jus continuously aggravating things.
Also I have managed to build up time gradually on an exercise bike starting with just 5 mins per week in january, now doing it twice a week and increasing by half a minute each time - up to 16.5 mins now...always difficult to tell but I don't Think it aggravates the pain massively so glad to have found something I can do and build up gradually. Sometimes I think the pain might be slightly improved in my legs, although I doubt that when have a very bad couple of days, but trying to stay positive that things may improve. In terms of the pain in my arm joints that has been much worse recently so going to see if physio has any alternative ideas and going to start trying the rowing machine this week, again building up very slowly if I am able to do it. Been reluctant due to the pain being so bad but I need to try something! The physio has said that machine exercises might be best for me as they limit the movements you can do so avoid over xtending your joints too much.
So would recommend a stationary bike to start with if you can get access to one. How is your walking? Mine still pretty bad but if you're able to manage it then keeping walking could help you - but check if any insoles might help you - i wear the ones that lift your arch as have flat feet like a lot of us. Have you seen a physio yet?
Pacing with any day to day activity is also Very important but Very difficult to get the hang of and I'm very much still learning when it comes to that!
buid up your exercise programme very gradually: most HSD/EDS people find repetitive exercise/aerobic can be exhausting , painful even possibly damaging
Also in terms of managing the condition in other ways I find heat helps - sleep with a hot water bottle between knees every night now!
I have a blanket that warms up when plugged in and I always sleep with that. It helps so so much!
I live in Romania and here we don't have physios that know about EDS. And it was a bit frustrating for me since they were trying to get me to do hard exercised and when I couldn't they would be like "you're not trying enough, anyone can do this" and I would just get frustrated. I have a physio in London to whom I go and see every 3 months.
Walking is ok for me sometimes. It really is something I enjoy but sometimes my knees hurt (it just feels like something is caught in the middle of the bones and it hurts when I walk) so then i rest and not exercise. I don't know if that's the right approach though. Do you exercise even when you're in pain?
As for the flat feet, my mum noticed this problem of mine when I was just a kid and I wore special shoes then and now my feet are ok. Still a bit flat but no need for insoles (I'll ask the physio just to be sure 
).
I am trying to pace... but sometimes i just get so frustrated of how I don't have control over my life and I just get angry and do things just to prove that I can and then of course I'm in more pain. And there's the other part when I am in a group of people and I want to be part of the group and do what they're doing and try really hard to push myself.
Just out of curiosity, have you ever tried P-DTR therapy? I had 6 months of continuous pain last year and I could barely sleep. I tried it (did not know I had HSD then so I was willing to try anything) and 80% of the pain I was feeling was gone.
I think with walking, although it's very much easier said than done you have to try and find out what your Base level currently is, i.e. how far or for how long you can walk before you have to stop due to the pain and/or it has a knock on effect by increasing pain over the following days. For me any walking is painful, in fact even when 'resting' there is always a low level of pain (possibly lessening recently) but I found that I was physically able to manage about 10 minutes before the pain levels increased significantly and if I was able to continue it would become impossible after max 20 minutes. As much as I was told to try and build up the length of time I was walking, I didn't manage to do this at all really, even over a period of months. It just seemed to hit me at the same point each time. It has only been since doing the exercise bike that I feel like some days I Have managed to walk a little more, or with slightly less pain so I believe this could be helping...walking is actually quite demanding on your joints (although should not be harmful if you can manage to do it) I think it is a case of making sure not to overdo it so you dont leave yourself in a lot of extra pain the following days. And finding other non weight bearing ways of building the strength of your muscles to help with your walking and obviously with life in general. But avoiding things that can over extend your joints which can cause injury! My physio has said you can do anything but it is about big careful and more aware about How you do it. Problem is we dont really Know when we are doing something wrong as for us it might seem normal. Which is why I have been nervous about progressing beyond just using the bike but like I say the rower is next on my list to try.
Totally get what you say about getting used to pacing and a more restricted life - it is a horrible thing to accept and not sure if I ever will accept it fully. Everything you do is a different experience from how you used to do it and it is hard to say no to things you would love to do but I'm maybe getting better at it now...it is supposedly about trying to do more on bad days and less on good days to find a better balance but I find you do have to plan rest days to recover from any event (even if the event is not something you would have considered tiring or hard work in the past it can be in reality) Important to avoid being completely sedentary on these rest days though as this of course won't help.
I have not hear of P-DTR therapy - what did that involve?
Walking was hard for me as well but now every time it feels a bit painful I remind myself to use the correct muscles. Like making sure my core is always powered up and that my glutes are there for each step I take and it becomes a pleasant activity i noticed that after being aware of these factors, even if I feel a bit of pain I just instantly focus on making my muscles work correctly and supporting my every action. It helps a lot!
It's so nice when someone understands Since 2 years ago my health started to decline bit by bit and sometimes I'm just worried it will be worse and worse so I try to do more things I would not normally do. For example I never knew how to ride a bike so I learned and it makes me feel amazingly powerful that I was able to do that. I also learned how to snowboard. I can't do it for a long time and there's hell to pay the next day and my knees always hate me but psychologically it was a great boost of confidence. I felt like if I can do this, I can do anything Please note that I look like a huge snowball with all the protection layers around me when I snowboard and I'm going slower than a snail but for me it's amazing
Honestly, P-DTR feels a bit like voodoo at first :)) the basic principle is that if you have leftover pain so to say from an injury and that shouldn't be there so they correct the pain signal so it no longer sends false data. There's a better explanation for it here: balanceinmotionsb.com/what-.... And after the sessions you feel exhausted because they reprogram the receptors so to say but it's worth it.
Do you do exercises on your bad days? I try to pause them because it sometimes feels like it will make it worst but I don't know if it's a good or bad thing.
I used to do a lot of walking (my whole extended family does walking/hiking for leisure). I found that my body hated the effort associated with beginning the walk, but then adapted really well. So the first couple of miles can be torture, but the 6 miles or so after that are ok AS long as i am walking on the flat. I literally cannot do hills at all. Also I found that I really need to do alternate walk and rest days. But I may be a little bit older than you as the idea of snowboarding fills me with horror!
Don't exercise like this on bad days - instead do core strengthening exercises.
Diagnosed with Joint Hypermobility Syndrome but I’m not sure.
More than just benign hypermobility syndrome?? 
Great Ormond Street
Do I? 