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Ehlers-Danlos Support UK
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Hi, I’ve just joined as I’m currently under investigation for EDS, but we are unsure what type.

I have a rheumatologist appointment on Tuesday and it seems it is with a really good Dr, he is also a medical director or something fancy like that.

I’m just wondering what may happen?

My GP completely agrees that EDS is a very big possibility for me and has said he’d be very shocked if I didn’t have the condition.

A list of some of my problems:

Scoliosis and spinal fusion

Lordosis

Chairi malformation

Super super soft skin

Sensitivity to things

Food intolerance and difficulties digesting food

Endometriosis

Full score on Beighton scale

Joint subluxations

Chronic pain disorder

There is probably more that I’ve forgot, I’m 21 years old and really struggling lately with my health. I’m already on Gabapentin for chronic pain, oramorph for really bad days, use a walking stick for bad days etc.

Any advice or tips are appreciated for my first appointment

Thankyou x

15 Replies
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Hi laurenamy_p and welcome🙋

I am so glad that you have a knowledgeable GP. It is often a very long road to diagnosis as most primary care Doctors are unfamiliar with EDS and so do not recognise the signs and symptoms. As you're 21- my son was diagnosed last year aged 21- you have already been struggling for a long time and will know what I mean, but hopefully you will soon receive an EDS diagnosis. You have on your list those that are connected with EDS. ..

I hope the rheumatologist you see also has EDS knowledge. My son and I had to pay to see a private rheumatologist specialising in EDS, after many years of numerous NHS specialists failed to recognise the cause of debilitating symptoms and our deteriorating health...

We have since been able to have the appropriate tests and treatment for co- morbid conditions, and this is ongoing.. There is no medical help for our hEDS, it is a case of learning to manage the symptoms as best we can with pain relief, joint supports/braces and whatever else we can find helps to ease the various symptoms- this will be a personal choice for you-. I practice mindfulness, and because of bowel problems I eat a gluten-free diet, which also remarkably ceased my permanent brain-fog, win win!🙂...

Physiotherapy is the recommended 'treatment' for hypermobile joints to strengthen muscles to support joints. It's important to have a physiotherapist who has worked with EDS patients and so will not damage weak joints. I have both good and bad experiences of physiotherapy.

Because EDS is considered rare- but is likely to be under diagnosed- Doctors and medics have little knowledge of it, and so you must become the educator to ensure you receive the help you need which is also appropriate.

To prepare for your appointment; Type a list of your symptoms and also your medical history to include joint dislocations/subluxations, manifestations etc and other incidents, hospitalisations etc. Our private specialist also asked for family members medical history, and I also typed a list of their symptoms. We were fortunate to have no time restrictions at our consultations and also had a physical examination of joints which I'm sure you will have. But at NHS consultations time is often restricted. If your referral is into the NHS, be concise and to the point but don't allow them to rush you. Feel confident at the end that you have relayed all your health story.

It is a journey, and I wish you all the very best. If you need any help feel free to DM me. We are all here to support one another. Good luck xxx

Please let us know how you get on at your appointment.

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Thankyoufor your reply, I saw the rheumatologist yesterday and it was awful.

He claimed all my co-morbidities are because I don’t exercise. Told me every thing wrong with me is because I don’t exercise.

Said I shouldn’t take Gabapentin(prescribed by a pain clinic consultant for chronic pain disorder) I am prescribed morphine for really bad days and he told me I don’t need it.

It was horrible, he said I do not have EDS because I don’t have blue tinted eyes, disregarded the rest of my problems.

He told me yoga and Pilates will fix everything.

I left crying and feeling stupid and like it’s all in my head

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Oh no poor u! I hate it when they make u feel a fool.

I will say i have ehlers( nothing mentioned on eye colour) just checked bloods, hypermobility( i am double jointed all over) pain in all joints,there is a thing that if u have it ur generally, thin , athletic and it called the “Peter pan desease” as u tend to look young and it is hereditary and my mum looks same as me...

I have found that osteo and pilates and yoga had helped me as u need to keep ur joints and muscles warm and strong or they will get floppy and not hold ur body right , we are like the jenga game , if u dont keep ur self fit and strong ur just b worse so he was right but his way of telling u this was not good.

U may have something else so he should have investigated that?

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Oh no my heart goes out to you❤ I am so so sorry this happened to you. I am sending you big hugs..

I can totally relate to what happened to you, and to feeling demoralised and hurt afterwards. This Doctors attitude is not acceptable at all. Unfortunately this is the awful experience of many of us with EDS, and it is all to do with the lack of knowledge I mentioned before. This is also why the majority of people have been forced to seek a private consultation in London. If living in the UK, this isn't as expensive as people first think and well worth every penny. If you want to consider this option I can give you details and help you with preparation.

I know how you feel right now, and believe me you're not alone. We have all suffered from such ' so-called Specialists', but have gone on to get our diagnosis'. All our journeys of EDS have forced us to become strong in will, to fight for answers and the help we need, not allowing Doctors and medics without knowledge to fob us off. It isn't easy, but Hopefully in time this will change.. There is now the Royal college of GP's EDS toolkit. I refer all the Doctors I see to this source. It has info, advice for GP's on diagnosing, and referring diagnosed patients for tests and on management.

I saw several rheumatologists over many years, and despite my suffering and increasing disability they would all fob me off in their own unique, humiliating and demoralising manner. I would feel shattered and upset for days. Fortunately I found support and advice on here which lead to mine and my sons journey to private diagnosis.

At least your GP believes you have EDS, and you are very fortunate for that. He will surely be 'on your side'. When you get your breath back, You should ask your GP for a second opinion. If you wish to see an NHS specialist, then you should ask to be referred under the choose and book system. I dont know where you're based, but you will be required to travel as specialists outside London are few. Dr Pauline Ho is at Manchester Royal, and I am reliably informed by my own EDS specialist that she is the only knowledgeable rheumatologist with EDS speciality in the NHS in the North of England, outside London.

Do let me know if you need any help.xxx

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I’ve booked a second GP appointment and am making a complaint with PALS about my rheumatologist appointment. I’m based in Birmingham but if travelling is needed I’ll do it xx

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Good for you! Taking control will help you feel better about what happened, and if you keep going you will get your answers. Very best wishes xxx

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It makes me so mad when people put their trust in so called professionals and they tear you to bits & don’t care about how that makes you feel.

Get a private appointment as I can’t tell you what it’s done for my son, he’s still got hEDS and POTS but he’s had the validation and respect from a Rheumatologist and specialist who knows, it’s given him back some self esteem and now he can face the future.

Good luck ☺️

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Thankyou for your reply, I’m going to try and get a private appt but at the moment it’s just not something I can afford at all :( I’ve spoke to my gp today and seeing him again in a week or so, going to ask for a second opinion and make a complaint about my appointment yesterday

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It’s really good that your GP is supporting you, keep going as am sure your doctor will find someone within NHS that has the specialist knowledge that can get you the help you need.

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I really hope so, ill even travel across the country at this point for answers

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You will get there, I am sure of that. You sound an amazing young woman who’s having a rough time. Please do not let that one experience put you down, most general rheumatologists don’t like diagnosing rare conditions, so they make you feel like it’s all in your head.

I think most of the people on here have had an experience like yours, it’s not right but still happens 😔

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Thankyou so much, I hope your son is well x

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Well he has his diagnosis for hEDS and POTS but will need further investigations. We’ve decided to get private physiotherapy and they will filter him back to the Consultant physio that we saw before..., it’s a long toad but after 4 years we know what we are dealing with, so just the DWP appeal now....

I really hope you get the support you need and hopefully find that specialist that can confirm all your symptoms in a diagnosis. We are all here for each other, it’s one of the best support groups I have found 🤗

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I'm regularly having home-made bone broth and I've found it's helped my joints and the pain in my joints hugely. I watched a gradual decline in mobility until I was avoiding exercise as it was too painful. I introduced regular bone broth with increased vegetables and my joints were wound back 10 years into being able to sprint again. I was greatly surprised. I'd not added this change for that reason. What a blessing. Loaded with collagen. Connective tissue needs collagen. Animal bones have good for our bones.

Chicken stock (Can substitute beef or lamb)

3 chicken carcasses

1 large onion

1 large carrot

1-2 large sticks of celery

Fill with water

Pressure cook for 99 mins. Strain.

Saute vegetables, chop others, add broth, pressure cook again. Soup.

Drop spring onions, bean sprouts, shaved carrot etc into broth. Enjoy.

Add it to anything instead of water. Oh dear the flavor!!!

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Check out the online information regarding the ‘Cusack protocol’. Lots of people are getting excellent results from it. Good luck.

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