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Ehlers-Danlos Support UK
2,100 members β€’ 662 posts

Feel like being ignored by Rheumatologist and GP not sure what to do next?

Hi guys,

I posted here a while back because I had suspected EDS (probably Type 3), as I slipped a disc at 15 from stopping suddenly at the bottom of the stairs, my ligaments in my ankle are very loose and I have a lot of the other symptoms and commodities.

I also have Vocal Cord Dysfunction Disorder (suspected) and the Respiratory consultants said they see a lot of patients with EDS and conditions in the same bracket with this problem and if you have asthma underneath it can make the problem alot worse.

I got referred to the hospital and got diagnosed Benign Joint Hyper mobility syndrome. Which I have read is either an outdated term and its now Hypermobility Spectrum Disorder or the same as EDS type 3.

And what was worse the consultant was very dismissive of my pain and said because I don't have marfanoid features and flat feet I can't have EDS. Which I have read is also not a thing.

I went to see a cardiologist who thinks its almost certain I have PoTs and they are just in the process of ruling out other issues and I have the symptoms of Mast Cell Activation Disorder so I do have some of the other associated conditions.

It really upset me as she was so dismissive of me and my mother (as she and my Granddad had the same symptoms but can't bend up like a pretzel as she is older now and my Granddad died a while ago) and just essentially told us to deal with it. My mother has really bad arthritis and was wearing her joints away when she was in her twenties and now she is in her fifties she walks around like an 80 year old lady and I really don't want to end up like her if I can avoid it.

I really would like a second opinion about this particularly in light of new symptoms and incidents as everyone is super dismissive of it. I went to A&E as I sublaxed my wrist doing a party trick (I know I shouldn't have) and my ligaments went funny and the triage nurse said oh you have a touch of hyper mobility in the joints?

It is frustrating as a touch of hyper-mobility I could cope with not the sublaxations and I just want people to take it seriously. I ended up in a splint for 3 weeks.

Now the private clinics have stopped self referral I don't know where to turn to, to get a second opinion.

My question is what do you think I should do? Has anyone else been ignored by their GP and local hospital once and what did they do about it?

I really feel I have a better case now as I know more, my cardiologist agrees with the PoTs theory and I need to get referred immunologist about the Mast Cell symptoms (not only because its important but most days I want to rip my skin off because it itches so bad) Further more I'm not a pushover anymore.

Thanks for anyone who reads this, any advice is much appreciated as I'm getting fed up of being ignored and I'm sorry this is really long.

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Hi

You might not self refer but you can ask your GP to refer you privately regardless of his or her opinions, the GP is not the expert, given what you have written and the additional symptoms this in itself is enough to ask for a second opinion privately.

I would also like to add don't let anyone fob you off about EDS 3, this is a real condition thst causes lots of pain and suffering, the fact that these rheumatologist and other consultants send you away with no help has become common place, like you many people fight for medication and help to manage, the more you don't look after your joints the worse you become, I had no idea I had EDS until my body had gone too far.

I would also get yourself to a physio who knows about EDS and can advise you on joint placement and exercise to help you strengthen your muscles around your joints, don't think this is by any meann pain free but it does help, you can also try some gentle stretching this also hrlos too. I was given a series of stretching exercises to follow by a fellow EDS sufferer who is a chiropractor and these helped me back from hardly being able to function.

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Ohhhhh thank you!!! I got the link from cyber barn and do match enough of the criteria (if they believe the old stretch marks i got at 6 & 7) and have a GP appointment on saturday. I'm not giving up on this. I keep dropping things because my fingers are so cranky and its horrible!

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Did you know that your GP could diagnose you? The RCGP has published a toolkit that they can use. Have a read up of it and give the link to your GP. rcgp.org.uk/clinical-and-re...

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Ohhhh thats interesting.My rheumatologist used the classic checklist I think so maybe thats why. I did have a look and I have;

A beighton score of 7

I have very soft skin (she didn't think so but I don't use moisturiser or anything else and I shower every day in boiler hot water and its still really smooth and the lady who does my limited number of piercings said its like going through butter. )

Stretchy skin- I can stretch it fairly far still even though it grosses me out and my skin and cartilage is weak. My daith piercing has moved a lot and is not straight any more which is the first time my piercer has even seen that happen. I also have loads of broken blood vessels underneath my skin there is one underneath my eye thats really noticeable.

Stretch marks pre puberty- I got my first stretch marks at 6/7. My Grandad said I was getting fat as was his wont which is why it sticks in my memory. He noticed them when I was wearing shorts and a tank top as they are everywhere. I don't know whether they will believe me about that one. I'm still getting new ones despite not doing anything. Every time I look down I get a new one.

Dental crowding- I pointed this out to the other rheumatologist what about dental crowding. She says its not very severe. She didn't seem to care that I had braces to try and fix it and make my teeth easier to clean but they are still buckled and stick out, just better.

Atrophic scars- on my face, shoulders, theres a few on my neck, my belly button ring where I took it out is a horrible mess even though my piercer said the scarring should be minimal like I expected a divot not a mess of knotted scar tissue. There are mostly from small wounds but I have a scar of my knee from a graze.

I also bruise like soft fruit e.g from my jeans waistband hitting my hips too often.

And the pain for more than three months and lots of injuries is a given.

I have a GP appointment saturday with a new doctor so hopefully they will believe me this time. I think I need physio on my hands. They are so painful. My finger popped yesterday and i dropped a whole cup of coffee on my lap and I can't play my violin anymore.

Thanks for sending me the link fingers crossed.

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It sounds like my daughter and I have written this. Only difference is she does have flat feet. We're fighting many battles and yes it is seriously hard work. My daughter is much worse than I was at her age. I pray she gets help soon. Other than you are hypermobile, she has so many other problems as well as I do.

I really can't add anything more than what gillianTS or cyberbarn have added.

The very best to you. Keep us updated

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Same.. I stopped wearing heals 3 years ago cause my ankles are so weak, my hands are so painful and my fingers lock, my vision is terrible and I have allergies (I hate it when my ears and roof of mouth itch.. Like you wanna stick a brush in there and itch right to your brain) I'm also sick of getting fobbed off and given more painkillers, I understand honey xx

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And my eldest has been referred to a joint specialist (sorry forgot that bit)

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Its so hard right? Like you have all the symptoms of it but they fob you off because oh its very rare... sometimes not just under diagnosed. Keep going right? xx

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Hi Emily. I'm so sorry to hear that you're not being taken seriously by those that should. I'm just starting the journey of being diagnosed but I have a good GP and that's important. Your GP should be able to refer you to another hospital/consultant as your right to a second opinion. I think its pot luck whether a consultant has an interest in this and its associated condition. Keep pushing for answers. We all need help to deal with our symptoms and preserve our health for the future. Be a pest. If you're GPs not great you may need to change GPs. You need someone who will professionally support you, one that's on the ball or who will ensure you receive the right diagnosis and treatment.

I wish you the best.

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Thank you! I'm just hoping to find someone to help. I'm really young but limping round like an old lady and then people just think you are a hypochondriac and say you're too young. Too young for what I'd like to do?

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This is so familiar and frustrating. I had my latest rheumatology run-in last year and was also given the benign diagnosis. I'm 62 and have been having these battles for over 40 years, with no end in sight. The problem has been for decades that they have looked at everything as an individual issue, to the extent that physiotherapists have said they can only look at (for example) one knee because that's what I was referred for. And there has been the usual disbelief, sometimes verging on ridicule. A dentist once threw me out during treatment for being "hysterical" because the anaesthetic didn't work and he didn't believe me..

I just want to get the diagnosis and treatment I need before they start telling me that I should expect pain because I'm an old bird and, as everyone knows, we really don't matter. The next round with the GP is next week - onwards and upwards, with no holding of breath.

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I feel you dude. They just don't believe that it could all be the same thing. Or rather caused by the same thing. I don't think it helps that the Ehlers Danlos/Connective tissue issues specialists keep changing the goal posts about diagnosis which means the information keeps changing which leaves lots of Doctors who haven't done a shed load of research on the subject confused. Mind you rheumatologists should probably keep an eye on EDS in my opinion as the hypermobile EDS keeps appearing.

I have been reassigned hypermobilty syndrome at my GPs with the last run in which also doesn't make sense as he said oh Ehlers Danlos? He did however write me a letter so my office have to now do something about my work station as that kills me and I can feel bits sliding in and its very unpleasant.

The physiologists who did my tilt test yesterday to confirm the PoTs diagnosis mentioned something like is that an arrhythmia? And he did order an echo cardiogram so I wonder if it could be trouble with the valves? So if thats a thing I'm going to try again.

It must suck to have been struggling for so long without any answers and that people keep ignoring you.Keep us posted on how it goes!

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Hey everyone. Thanks so much for the advice. I have an unexpected update. Went to the GP who did give me a letter to make my employer do something about my desk set up (a chair that doesn't give me bruises would be good or keyboard to not pop my shoulders out). And he even oh Ehlers Danlos but then called it hyper-mobility syndrome on the letter.

Today I went back to the GP for my symptoms of Mast cell activation disorder (can't stop itching), and explained how I have got PoTs and Hypermobility/Ehlers Danlos syndrome (or whatever which doctors what to call it) and they tend to all come together and to please stop the itching.

She was really pleasant and asked oh so who said Ehlers Danlos, and I explained about how the Rheumatologist called it benign joint hyper mobility syndrome, the other GP at the surgery switched between hypermobility syndrome and Ehlers Danlos and I don't know which it is: but I do believe I fit better on the Hypermobile ehlers danlos syndrome spectrum. I explained to her how I'm getting mild varicose and spider veins in various places and when I have nicked the backs of my legs with a razor they have left scars like stretch marks among the other symptoms.

She read my rheumatologist letter and mentioned that I didn't have signs of varicose veins or atrophic scarring (and she didn't even look) and I explained that they didn't really appear until last year. I said perhaps that is why I got diagnosed with benign joint hypermobilty syndrome because the skin issues didn't fully appear till later and she nodded. She also didn't scold me for being on google and said hey its cool you're the authority as well as you have the problems. She said let me think about where is the best place to send you with these problems and I will get back to you. She said give me a nudge if I haven't gotten back to you within 3 weeks.

By lunchtime the doctors surgery had rang back and advised that I had been referred back to rheumatology with suspected hypermobile ehlers danlos syndrome and mast cell activation syndrome and a confirmed PoTs diagnosis. Lol I only had the tilt test Monday but my heart went so fast and blood pressure dropped so low the pysios were like oh yeah so thats what PoTs does to people.

It was so nice to be believed, I only got my PoTs diagnosis and referred to cardiology because a GP was nice and believe that I had done read about it and it described it perfectly and then did the stand test. I'm glad I saw her and yay new GPs

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