Whose care are you under?

Hi all, I was wondering whose care you're all under medically as since my diagnosis I've sort of been losing doctors as each one decides there's nothing to be done. I currently have a Gastroenterologist on yearly review for stomach symptoms, a hand therapist for my fingers which are all over the place and a physio.

I had a cardiologist for my POTs, but now I'm on meds for it I've been discharged. I had a rheumatologist who just sent me a letter saying as I have EDS there's nothing they can do, and discharged me. I had a geneticist, but they said they dealt only with diagnosis, not care. I had an ortho, but they said with EDS they can't help. I also had one appointment with pain management, and have been sent off into the world with their advice.

My issue is that I don't have any supports or splints, just crutches. My GP keeps telling me to ask my physio, but physio have said no no no, just the exercise to strengthen. When I tried to push for them for days when I need to get to work but am having a bad flare up, she said 'work will just have to understand you need time off' which is not a practical solution and won't help me maintain my work, especially when I flare so often, especially in the current heat. When I told her this, she suggested I see a counsellor to help me accept my reality.

While I understand that that can be useful for some, I feel like that's not what I'm asking for at all. Equally, pain management wanted me to try a cognitive behavioural pain management course, but I don't want to spent four weeks on an inpatient program just to discuss how pain is annoying and I should man up.

I was just wondering if I should be getting more support than I am, medically. So I wanted to know what everyone else is doing?

5 Replies

  • Checkout if there is a specialist unified service you can be referred to. London has a couple. Look on the EDS website to checkout where there might be one near you,ma long waiting list usually but might be helpful.

    . I had access to one at Leeds ( now dismantled ) under Prof Howard Bird. The OT's made splints for hands, the physio for ankles etc, podiatry to stabilise ankles and feet. All understood our issues , and the individual variations within. It offered a pretty " joined up service" for the joint problems and was excellent. Not for gastro or cardiology though.

    I also had some good pain management sessions , including some helpful ones with a psychologist. Not using a " programme" though in the end. CBT and " mindfulness" are not the answer to all problems and might not be appropriate or helpful for you. But this psychologist was " old school" and talked, listened and adapted to my issues. After several years dealing with my EDS issues that helped me . A mixture of coming to terms with the condition, it's consequences, adapting to it, asserting when dealing with medics, different techniques to cope with practical issues , and pain . It helped me. But all this was 10 years ago. I still have EDS and most physical aspects of it are getting worse as I get older. I still have to deal with so many different medical specialists and only some are really helpful. Being politely assertive works best for me. And knowing how my body works to function at its best.

  • I have been diagnosed with hypermobility and EDS but I have been sort of left to it. I have had an echocardiogram as the rheumatologist who diagnosed me heard possible mitral valve prolapse... But have yet to hear the results from a cardiologist. Apart from that.... Nothing.

    I could do with some sort of support for my left hand though... My thumb is so bendy as I'm getting older it's starting to hurt more and more.

  • Good to hear from both of you, and obviously very glad to hear lancashireflower has had good experiences, and confused alongside suzysheep about ours :S I know there's a specialist unit at UCH but according to their website they just diagnose you and send you back to your home hospital for good old physiotherapy. As I was already diagnosed by a GP, then a rheumatologist and then for good measure a clinical genetics team, I don't really need to collect more diagnoses, and even if I had wanted to my ex-rheumy told me to get referral for the unit from my GP, and the UCH unit only accepts rheumatologist referrals. A paradox! Oh wait, just bad practice.

    RE: your hand suzysheep, I see hand therapy (at least someone's bothering to manage my condition with me) and it's probably worth asking your GP for a referral. I have had them make me splints in appointment to go home with which is useful, except they can't seem to decide what kind of splint would be good, and recommended 24hr wear for 2 years which naturally meant that after a month on my EDS-tastic velvety skin I had severe inflammation and skin loss. So always trust yourself first.

    But really, do we not get a lead consultant? Or a specialist nurse? Surely they don't expect us to call 999 everytime we dislocate, or drag ourselves to A&E? That's the advice I was given, but if I did that I'd never be out of the hospital.

    Excuse any typos, I have dislocated my index finger on my left hand, so I reduced and strapped it but it makes forr tricky typing!

  • I'm afraid I don't have any wise words or advise really, and I'm sorry you are stuck in this position too...but you have just described exactly how I'm feeling. Everyone does there one little bit... But no one looks at the bigger picture or offers any ongoing support. I dislocated my hip for the first time a few weeks ago, have had terrible pain in my back since..gp said you have eds get used to it!

    I've resigned myself to trying their pain management blah blah.. Figuring I have nothing to loose now!

    I wish I could say something helpful, but maybe it will be comforting to know you aren't alone with this battle! GOod luck...and push for more, the help is out there, you just need a really good gp who knows where best to send you. And in terms of splints supports etc..maybe orthotics and Physio would be able to assist with that? They do finger splints etc if you are struggling with that

    Really hope you get some more help soon! Xx

  • Hi pikamonster, I have JHS and was diagnosed before I went to UCHL to see the rheumatologist specialising in hypermobility. I was referred by my local pain consultant. The lady I saw their decided that I should have an urgent referral to the hypermobility rehabilitation inpatient programme at Stanmore hospital RNOH, as I have very bad lower back and hip pain and I was not improving in the outpatient services. This was back in Jan this year and I am still waiting to go, looks like I'll have waited 10 months before I actually go on the programme. Hopefully it will be helpful, but thats about as far as I've got with getting help for this condition. I am in constant pain with my back and now that the referral has been made for this programme my local pain consultant doesn't want to try anything else to help before that. I will also be seeing the orthotists at Stanmore and I am being assessed for a corset to wear, so hopefully I'll be able to do more and take pressure of my lower back so I'll be in less pain.

    My local services have also made a number of different thumb and wrist supports for my hand which I use fore different tasks and arch supports for my feet. I've been to lots of different physiotherapists, but the exercises they give me leave me in too much pain afterwards to do. I have also done hydrotherapy and that was a bit easier for me. My local rheumatologist discharged me as he didn't think he could help me any further. I have been seeing people from my local pain service and they are very nice and some of it helps. The pain consultant on the team helps with what meds I use for the pain and has done a series of injections in my facet joints, which help somewhat but only for a few months.

    I have a follow up apt at UCHL in Aug which was supposed to be after the inpatient treatment, obviously she didn't realise how long the waiting list was for this programme, even though she said she works closely alongside that team?

    I hope you get more help and support soon.


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