First time poster also seeking advice.

[Hambo245]

To set the record straight I haven't been diagnosed with EDS in the years I've constantly been going back and forth to my doctors surgery and I'm not 100% it's what I have but this group appears to be what I have most in common.

To give some background I have pretty severe arm/neck/shoulder pains that are mainly due to the subluxations in my shoulders. I'm 20 now and it's been about a decade since I noticed my left shouder had a slight wiggle which would've been the first minor issue. About 5 years ago this became a major issue when in the space of a few months the wiggle became a full blown subluxation (shouder out of socket then it snaps back into position). I'd never really been one of the flexible ones as a child but in the space of 2 years from end of GCSE's to start of A-levels my fingers, wrists, hips & left shoulder had all become loose. I tried to get doctors to understand the pain that came with it all but no one really seemed to get it at all instead I was just given Cocodamol and then Tramadol and told it should pass.

I've seen maybe 10-15 different doctors at this point including a rheumatologist who had told me it was just JHS and nothing more hence my doubts about EDS. Virtually every doctor I'd seen had been focusing on my shoulder ignoring my sore hips, elbows, fingers and kept inferring it had to be some sort of prevous impact injury after telling them it wasn't and couldn't be. Over the years I've been sent to physio 3 times (each 6 months plus courses) all with no results and the most recent ending 2 months ago and being for my other shoulder which only took about 3 months to go from healthy to completely shot and identical to my left. At this point I feel as if I've done it all with no results. I've seen pain management but they just sent me back to physio. I've had MRI's but apparently my shoulders are healthy and yet I sit here today barely leaving the house, struggling to function and taking the max dosage of my 30/500 cocodamol constantly. It's not a good way to live and it really has taken its toll mentally.

Right now im waiting on a referral to a facility in Manchester which would be an intense 2-3 week long 1 on 1 physical therapy course but I've been told to expect a 6-9 months wait. I'm not entirely sure what to do now though. Is there something I've missed? I don't have the money for private.

Any help is appreciated. I know I've missed details I'm not the best at writing so i'll apologise in advance should if it's added later.

[Steenygirl1]

I am awaiting diagnosis too and from what I have seen on other posts most rheumatologists do not have the experience to diagnose eds, needs specialist rheumy which is why most end up going private to avoid being shunted from pillar to post and not getting answers. Sorry couldn't be more helpful but that diagnosis really would open more doors for you.

[Tillyray]

Dear Hambo. My heart goes out to you. You should not be left to suffer with this. But unfortunately this is exactly the same story for many...

I have been in exactly the same situation as you with constantly subluxing ankles which cause tendonitis, tenosynovitis that cannot heal. I saw a rheumatologist who did scans to confirm it, but he was uninterested with any other symptoms and insisted my ankle problem had been caused by injury when it had not..I saw a trauma and orthopaedic surgeon who suggested operating. But I was aware -as it had occurred without injury- that it could happen again and what I needed to know was 'the cause'!. I had began suspecting 'connective tissue disorder' could be the problem. The next MRI showed inflammation but no ligament/tendon tears to warrant surgery, yet still I was in agony and my left ankle could not move - the micro damage done in these conditions often cannot be picked up by MRI scans, and due to subluxing joints it can be reoccurring- I still suffer with this two years on.

I requested a second opinion (7th rheumie seen) by what I believed was a more qualified rheumatologist at The Kellgren centre Manchester. I had other tests and finally -after six months waiting inbetween appointments-, the rheumie had no answers and only confirmed my 7+years diagnosis of fibromyalgia, which I knew was not what was happening here -'fibromyalgia does not cause subluxing joints'- The rheumie however,did say I had hypermobility and that this was also a cause of my pains. -She did not diagnose any hypermobile syndrome or EDS-. I told this rheumie about my son who also has some of the same symptoms, and she said that he should be referred to a rheumatologist. To my surprise I was discharged, still suffering and unable to walk without agony. But I was able to take the 'hypermobility' connection with me and add this to the puzzle.

Struggling for years with illness and symptoms had forced me to continually visit my GP and seek many specialist referrals, but I had still been given no help for my increasing symptoms and disability..My son had a previous diagnosis of ME and had been very ill. But even though he had recovered well from it, he still had joint pains and other problems that could not be relieved.

After so many specialist consultations had left me demoralised over the years, and my GP was beginning to suggest my symptoms were all hormones - another standard response when you are a woman of certain age. The other one given when Doctors don't know the answer is, that your physical symptoms must all be psychological 😬- I decided to research -like you- and came upon EDS.. I could not risk more wasted time with unknowledgeable consultant's, and so my son and I went privately to see Dr Hakim where we were both diagnosed with hEDS ( EDS is an hereditary disorder of connective tissue) This is not as expensive as you might think, £300 and then you can go back into the NHS for treatment's and other referrals if necessary.You then have a diagnostic letter which will help direct your GP to give you what you need.. I cannot recommend Dr Hakim highly enough🙂.

There is an EDS specialist rheumatologists at The Kellgren centre, Manchester RLI; Dr Pauline Ho. She is recommended by Dr Hakim himself🙂. Had I known about hypermobility and EDS connection when I asked to be referred to Manchester, I would have asked to see her, but instead I saw someone else. So It is crucial you see a knowledgeable rheumatologist or like me - and unfortunately as you've found- you are sent in all the wrong directions to all the wrong Doctors ☹😱

I have learned that only a rheumatologist specialising in Hypermobility, EDS, will be able to recognise the significance of symptomatic hypermobility and have the knowledge to diagnose EDS. Or a geneticist at a genetic centre can also diagnose EDS -but not hEDS- by blood testing.

I am also discovering that even with a diagnosis you have to be proactive. This is a rare- under diagnosed- condition and few Doctors are familiar with it...I hope you are able to get the answers you need and that you can start to feel better. I wish you luck and best wishes in your journey. Please feel free to ask other questions, we have all been along that road to diagnosis and we're happy to support you. 🙂 xx

ps.. Physiotherapy is one treatment recommended to strengthen weak joints, but it is important that painful, damaged joints are not made worse. A physio with knowledge in these conditions is advised... There is much information on the HMSA - hypermobility syndromes association - website and you can ring them, It is ran by knowledgeable volunteers who are all affected in some way, and EDSuk website has information.

[Country4eva]

I have been having issues all my life but not noticing until I had my first of 11 bowel obstructions in 2006. I just happened to end up a year later in a hosp who had a pain specialist who was studying EDS. I walked in his office and just by my appearance he said "you have EDS." I was floored. I felt like a alien. A RN and never heard of such a thing. I was born with both my feet turned outward. I have had scoliosis since age 5. I started having trouble swallowing at,age 12. I had outbursts and trouble controlling my emotions. With the EDS diagnosis came TMJ, trigeminal neuralgia, migraines, shoulders popping, hands aching, feet aching, slipping rib syndrome, 4 curves in spine and osteoporosis, insomnia and dysautonomia which causes a heart rate of 204. I have been through so many hosp and Drs and pain clinics, I feel like lab rat. I struggle daily on what to take or not take as far as trying to keep my pain at bay. I also been told I have fibromyalgia. I have had a Scarlett Letter placed on me as far as medication I take. This so call opiate epidemic has ruined those with chronic pain. Alcohol, tobacco and marijuana seems to have gotten its,approved place in society. I have,a DNA profile that I am a poor medication metabolizer but I still cannot get appropriate amount of medication to control my pain. Professionals hold their breaths as I am in the ER and walk out with triple the dose of pain meds as a so called normal person. We are not all the same. CBD oil works but though it's legal in my state, Drs want to discharge me,as a patient if I use it. So where are we zebras to go and what are we to do?