EDS or HMS

[life_as_me_2003]

Hi,

In June 2015 I was diagnosed with mild joint hypermobility and bilateral pes planus ( flat feet ).

Since then my condition has only got worse, at the time I was only in a large amount of pain and my joints wouldn't dislocate. my joints constantly dislocate, I suffer from chronic pain and fatiague, I get really dizzy, my heart rate sometimes gets relly fast, every time I stand up and I react mildly to quite a few things. According to the NHS website, this means I EDS type 3.

Unfortunately, my parents don't understand what is wrong with me. after being diagnosed with hypermobility I was referred to have physio which has done nothing to help in some cases it has actually made some joints worse.

Also, all the medicine I have been given by my doctors has done nothing to help and I have just reacted to it.

I was wondering if you had any advice on how I could possibly see if I do have EDS and if you have any advice on helping with pain because at times it does get really bad and although I don't know any diffrent, I have been in pain constantly for as long as I can rember, my good days, days that I can get through without crying because of pain, are becoming more rare.

Sorry this is so long

[loadsofissues]

I hope loads of folk come forward with suggestions for you - I am just starting out myself looking for things that might help. Today I'm getting referred for podiatry - these people look at feet to see how this effects how you walk and stand and I hope that they will offer some advice as well as shoe insoles to make me walk better. Have you had insoles made? I'm finding keeping warm helps and to keep moving. The stretches the physio gave me made matters worse too but they failed to spot my hyper mobility and thought i just had a tight hamstring. I'm also drinking lots of green tea, eating plenty of protein and green veg, turkey, nuts, avocados, cabbage and coconut water is supposed to be good. I'm not going to seek drugs as the side effects appear to make lot of folk worse. if i find anything else out I will let you know.

[life_as_me_2003 in reply to loadsofissues]

My physiotherapist thought that insoles wouldn't make a difference, and my feet should correct themselves on their own so I never got any. i hope you get the advice and support to help

[loadsofissues in reply to life_as_me_2003]

i hope i get the right help. not sure if shoe inserts will help either - but the way the podiatrist showed what was happening to my skeleton on his dummy skeleton as a result of my fallen arches was exactly what I have been feeling inside and I feel all my tendons/muscle and other body tissues being moved as I Move - i am all twisted and out of line. This morning as I walked I cracked and clicked everywhere. It was unnerving when I took a step and the impact from my foot cracked up my neck. my bowel is effected for sure and I have an appointment to see about this in a few weeks time and my other pelvic organs feel out of line but they haven't been diagnosed.

[Hidden]

Hi about the fast heart rate and dizziness when standing. I was diagnosed with POTs 'postural orthostatic tachycardia syndrome' about 2 years ago. It's rare and the doctors don't really know much about but it would be worth looking into. Does your heart rate constantly beat fast as well as when you stand up? Mine beats fast 24/7, when I'm sitting down, standing up, sleeping even. And this is what causes my dizziness and constant fatigue. I think definitely think about looking into it! Hope this helps

[life_as_me_2003 in reply to Hidden]

Thanks, I will definitely look into this. When we had to count our heart rate for a class mine was always higher than everyone else.

[BadHare]

Perhaps ask your GP to refer to to a pain management clinic. They have a team of health professionals that work with patients that have chronic conditions.

[life_as_me_2003 in reply to BadHare]

I have already asked about this and they said that the pain management clinic wouldn't be able to do anything more than the doctors. so i never got referred

[BadHare in reply to life_as_me_2003]

Having been on two pain management courses, I can say that what you've been told is blatantly untrue. Can you see a different GP, or ask to be referred to a pain psychologist.

[life_as_me_2003 in reply to BadHare]

Because I have been the once my parents won't take me again, they only did it that once to get me to stop complaining about the pain and they thought the doctor would say it was all in my head, wich they didn't

[BadHare in reply to life_as_me_2003]

The once to a GP, pain psychologist, or pain clinic?

Regardless of whether the pain is in your head, or not, doesn't matter if you're experiencing it. Ask someone else to take you to appointments if you can't go alone.

[cyberbarn]

Sometimes it can be tempting to try to get a formal diagnosis, but with EDS the treatment is for the individual symptoms, and everyone has something slightly different so sometimes it is better to concentrate on the symptoms.

If you haven't already gone to a podiatrist and your feet, knees or hips are a problem, then it would be worth doing that. And I second asking for a referral for a pain clinic. They really are the experts at pain. They would be able to refer on to others for things like dealing with the heart rate and dizziness.

[BobLhead]

Agreed!!

So many Health professionals are unaware of these problems. Not to sound disrespectful towards DR's, but, we have to remember that one may not be open to the issues. It's very sad that we need to educate many of them when it comes to hyper mobility and the results it can cause.

Doctors "Practice" medicine... right? Well, sometimes I believe they are stuck in their rut and haven't the "Outside the Box" tendency to look further. It is WE who must advocate for ourselves as well as others like us.

Keep looking and don't hesitate to try different Drs. I had to go 6 hrs & 2 states away which also meant hotel cost. I got answers that made sense and more importantly, I was respected and my problems taken seriously. It will be a slow ride but at least I now feel like I'm on the road to some relief and understanding. I already have more peace.

Hoping for better days for us all🙏

[Hypermobileme]

Hi!!

Welcome to the HSD/EDS FAMILY!!!

The best way to get a diagnosis is to go to your GP with the new criteria for EDS. I am not 100% sure the NHS one is up to date. The best one you can find is on ehlers-danlos.com. The Ehlers-Danlos society have so much information on EDS. Go to the GP and Insist you are sent to a rheumatologist for further assessment and diagnosis. They need to provide you with all the correct treatment so etc.

When I went to Physio with a hypermobility diagnosis they said my feet were flat but there was no point in changing something I have had since birth! In fact if they had given me orthotics then my back probably wouldn't have been as bad. Also they have a deep tissue massage and I swelled up like a baloon and couldn't walk for a week! They told me it was normal!?

Just remember your limits and ask for a Physio that has EDS Or HSD Knowledge (✿◠‿◠) best of luck!

[Barbara-41]

I have EDS-hypermobility. My flat feet didn't bother me =when I was young. Now I wish I'd started using supportive shoes and orthotics much earlier than I did. With flat feet your feet turn inwards–overpronation which causes problems with your knees and lower back. The most supportive shoes are Brooks Beast (men) and Brooks Ariel (women). Since Brooks last changed their last. I've had to get the men's version because I need a high toebox (Running shoes, which these are, have had more work done on them for foot problems than other types of shoes.) As soon as the sides of the shoes lose their stiffness, about six months for me and I can't run or even walk much, my knee pain increases and I need to buy a new pair. When running shoes are inappropriate, the best shoes I've found are Aravon, Merrill, and Abeo Huntington posted sandals. I don't know of any supportive, motion control dress shoes. In all but the sandals I wear Lynco orthotics for flat arches, memory foam, posted to control over-pronation, with metatarsal support. These shoes and orthotics aren't cheap but they cost less than orthopedic doctors which I didn't find helpful. Everyone's different. I hope that among what I've found worked best for me after many years of trial and error you'll find something that will help you.

[TumericGold]

Long before I got diagnosed with hEDS, I discovered I’d got flat feet with no discernible arch and so benefit from supportive or foot bed type footwear.

I found a brilliant pair of Vionic supportive trainers from TK Maxx (£20 as opposed to the RRP of £90) and they are amazing. Can recommend them though haven’t tried their wider shoe range as they do lots of different types of supportive shoes.

I have tried inserts from eBay with missed results, the firm ortho half-sole ones seem better for me personally, but YMMV so would suggest you give some cheap ones a go.