Ehlers-Danlos Support UK
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Hypermobility. New to this forum, new diagnosis

Hi everyone just a little about me I’m 27 and for the last two years I’ve suffered with extreme pain swelling and spasms in my hip and thigh and it’s only got worse and worse. I have to use crutches and can barely walk 5 metres on them without crying in pain. I’ve been put in multiple crazy sting painkillers with hardly any relief and after my doctor sending me to completely the wrong people and having the wrong tests over and over again I finally got somewhere at the end of last year.

My mum told my doctor to recon me to rheumatology as it is sort of my last hope and yesterday I had my appointment and for the first time in two years I came out of an appointment feeling positive and not crying my eyes out. In the appointment was the main consultant and the senior consultant for Physiotherapy , they both sat and listened to every single thing I had to say to them.

He said after just even talking to me for a few minutes, seeing my swelling and pain and examining me he’s convinced I’ve got Hypermobility syndrome. My first real step to a diagnosis and a first real step towards the correct treatment and help for me.

I can not wait until my next appointment with him to see what the next stages are as I really just want some sort of life back. Living in my house day in day out for the last year has pretty much drove me nuts and the pain is just uncontrollable now :(

I would like to hear from other people who have this and their experiences and what kind of thing really helps

X

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Hello. Glad you're finally getting somewhere. Has this rheumatologist diagnosed you now?. Is the next appointment with him so that he can suggest some things to help you?. Sounds very good that they had the senior Physio sit in on the appointment as the next step usually seems to be physiotherapy, including hydrotherapy.

Keeping on the move usually seems to help with the pain - I know in my own case if I rest too much I kind of seize up. But most of us with hypermobility problems (I have hypermobile Ehlers-Danlos Syndrome) unfortunately have quite a lot of pain. Personally I don't want to leave my house anymore but I can see why it would drive other people nuts!.

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Yeah that's what the next meeting is all about, I was very impressed in how quickly I got seen to be honest he got my referral and called me the same day and I got seen 2 weeks later, thank goodness.

I've had physio before for about 6 months but it was awful and didn't help and it was someone who was about 4 years younger than me so didnt have enough experience to deal with someone who has all the pain etc that I have. I've seen so many consultants ove the last 2 years but all fr the wrsame no things.

Unfortunately I can barely go from my bed or the sofa to the toilet let alone go anywhere else lol I do bits of yoga but only ten mins at a time. Moving is the worse possible thing for me lol I tried all that and that's what made me worse

Xx

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But all for the wrong things*

I love my pain doctor though he's been brilliant and my constant through all of this lol he's the only one who actually tried to help with the pain side of it all

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Yes I have to tread a very very fine line with just keeping active enough but not overdoing it, and 'overdoing' it isn't really doing very much!. So I know completely where you're coming from now. Did you try hydrotherapy last time?. I've been referred for that but am really nervous about it.

What kind of thing did your pain doctor do?. I've never seen one.

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No it was just basic trying to throw my bad leg and hip around asking stupid questions and acupuncture which all made it worse for me lol. I am actually really looking forward to hydrotherapy I’m a huge water baby so just being in the water and weightless will be nice for, I will let you know how my sessions go if you like?

My pain doctor talked about the different ways of releaving my pain other than what the normal GP can do such as lidocaine patches different painkillers, I had a few steroid injections under sedation (but know of these helped) but he’s said he won’t stop until he finds the right combination of things for me to get some relief, I’m seeing the head of the pain team for the whole horder centre which covers Sussex so I’m lucky in that respect. He also try’s to think of different possible diagnoses and different doctors I might be able to see. I’m very fortunate with him tbh as a lot of people I know have very bad experiences with theirs but as with any of us it’s about finding that one doctor who listens and cares.

If your struggling to handle your pain and think your GP just isn’t doing enough you can ask to be refereed to them even if you go and have talk with them xx

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Thanks, and I would like to know how you get on with hydrotherapy, yes please. My nearest pool is nearly an hour away and I have to get patient transport every time. I had to use a neck brace when travelling and some of the drivers I've had before haven't exactly helped my neck problems, so I'm pretty anxious really.

My G.P is very nice but doesn't know my about Ehlers-Danlos so he tends to look for advice from people like physios. The last physio said I couldn't have anything stronger than the Tramadol I take now. She made me feel like a lazy drug seeker to be honest, I cried for hours after I saw her.

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G.P doesn't know *much* I meant!

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Normal Physios don’t have any right to tell you that at all, what does your normal GP say about pain killers?

I’m on tramadol cocodamol slow releasing morphine and oramorph for very bad days/nights and atm I’ve had to be put on diazepam. It’s not great but when I’m not moving it does help lol. 100% speak to your gp about a refereral to pain clinic and ask for a senior doctor there. I’m so sorry you have had to go through this without the right help and care.

If you are being seen through a hospital you can call PALS and they are a team who help you if you have a complaint about the care your receiving and in some cases can put you in the right direction or push things a little further along. Would you like me to private message you so we can talk on there a bit more private x

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Don't worry about talking on here, I don't mind.

My G.P did mention trying something stronger than Tramadol but the physio put a stop to it, and also put a complete block on my G.P referring me for a possible hip replacement.

I did tell my G.P how upset I was. I may be able to push for a stronger pain killer but am a little scared to change as I get bad side effects to almost everything, and Tramadol seems ok for me, as does the Oramorph. I thought it would be just my luck to push for a different one and then have to go back and ask to be changed back to Tramadol.

My G.P took me off Co-Codamol when I went on Tramadol as he said it's not good to mix them. I'm now faced with not having anything for my migraines though........

Sorry, I am taking over your question space on here!.

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I would suggest you get a new doctor and new physio and demand to see the pain team , tbh they don't like giving things stronger than tramadol, you just need to have other things to get , I found when my pain was t that bad the cocodamol and tramadol worked well together. But do not let them bully you, you know your body and your pain xx

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I changed doctors surgery about two and a half years ago, this surgery and doctor are brilliant compared to the last ones!. I am going to ask about having the co-codamol back though as it used to help a bit with migraines. Thanks for your support, and I wasn't being 'off' about the private messages, it's just that I'm hopeless about checking and reading them, this is easier for my feeble mind somehow! x

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Haha that’s ok. Yeah at the end of the day they can’t leave you in that much pain and really not doing anything to help you. You I can actually change doctors internally Im in my 3rd one now in my doctors but got the right one in the end lol x

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Possibly Sumatriptan for migraines? That helps me 🌻

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Hello. Just been prescribed Zomig, they wouldn't give me triptans before as I was taking an SSRI.

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I hope they work well for you! Do let me know.🌻

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Hi bexamy

I was diagnosed April 2016 and I'm in my 50's, at first I laughed at the rheumatologist because I had never heard of EDS or even began to consider my hypermobility could be the cause of my horrible pain, which I had had for tens of years, simply because I had always found it very useful being flexible, or at least I thought I had until diagnosis.

The first thing I did when I left my appointment was read as much as I could about the condition and how I could help myself (which I would encourage you to do) and the next thing I did was to try and find someone who could help me overcome this awful pain, I had ceased up and walking was an issue, frankly doing anything was so much of an effort, I did no exercise because every time I did it hurt and I felt like I was living in a vicious circle. I was so lucky to find a chiropractor who was happy to do some soft tissue massage on all of my body, its what I felt I needed more than anything, little did I know when I made contact that she is also a fellow EDS sufferer and so knowledgeable about the condition, she was the best thing I could have found, the massages really helped, she gave me loads of help in soft stretching exercises I could do at home and literally I gradually began to unfurl, gone were my anxiety about exercising and moving, yes I have bad days and very bad days. I also suffer with Behcet's which affects my joints too in a different ways along with a host of other things with this condition.

Next I saw a musculoskeletal podiatrist who has helped me see myself in a different light too, how I stood, how I placed my feet and how unsteady I was, I was given balance and strengthening exercises to do and referred to a physio who was young and very enthusiastic to help me improve my health and well being, incorporating balancing and strengthening my ankles, legs and pelvis.

Sadly at the moment most of my daily exercises are on hold due to a hidden inguinal hernia which was discovered when I was admitted to hospital in an emergency at the beginning of December, due to have surgery next week and looking forward to recovering and rebuilding my life again.

If you are not happy with the physio then do ask to see one that has experience with our condition, a lot of people just think we have flexible joints they do not consider how painful these are or can be when used in the wrong way. Be truthful with the physio if something is not working or it is just too painful then say so, ask what else you can try hopefully they will get to understand your capabilities and adjust what they are asking you to do accordingly.

Good luck. Gillian x

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I’ve not actually had any Physio for about 8 months I stopped it as it wasn’t working for me but in my appointment the other day the consultant physiotherapy was in my appointment with me and she will be doing my hydrotherapy from now on as she has a god understanding of it all so I’ve got high hopes for her and she was a brilliant listener and works closely with the consultant rheumatologist I am now under the care of :)

I’ve got an extra bone in the hip joint and that’s causing the damage to the ligaments and because I’ve been having the wrong things done and the wrong diagnosis that’s why I’ve deteriorated so bad and so fast to the point in bed and sofa bound now but I’ve got my fingers crossed I’m going in the right direction now with the right care finally lol

Xx

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I have several foot issues (bunions, hammertoe, pronation, and neuroma) and it is hard to find a shoe that I can walk in all day. Well, finally I did! I have Orthofeet's grey and red pair and they look and feel terrific and have great arch support. Will definitely look in to purchasing another pair.

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I've experienced such intense foot pain that in the past I had to curtail my gardening activities. These shoes have given me back my gardening life. I can now stand again for hours without discomfort. Orthofeet are definitely not the most attractive shoes I've ever had, but they are qualitatively the most comfortable walking shoe I've ever put my feet into. The shoes were true to size, and were "out of the box" comfortable the first time I put them on.

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