EDS or HMS

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

13 Replies

oldestnewest
  • 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.

  • 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

  • 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.

  • 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

  • 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.

  • 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.

  • 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

  • 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.

  • 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

  • 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.

  • 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.

  • 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🙏

  • 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!

You may also like...