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Ehlers Danlos/Fibromyaligia

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I am really struggling with all my pain all over me. It was nice that my doctor bothered to even tell me she tested me for Ehlers Danlos in December, but only bothered to tell me today. Well i told her how much pain I am in. Sharp stabbing pain running through my arm, fingers which in result i find it hard to do cooking and typing. I told her i shouldnt be able to bend my fingers back she told me i dont have ehlers but others say i have the facial features of it, but they also believe i have fibromyalgia. But i dont believe my surgery because I tell you why, the hospital says I have things, that the surgery disagree with. Remember GP's are General Practioners, would u believe GP's or the hospital? I tell u the things the hospital and say that i had.

Hospital- Mild Concussion, GP- Whiplash
Hospital- Migraine , GP- Cluster Headache, but only a tiny migraine. 

I dont know what to do, this has been going on quite a while, a long time ago they put it down as muscle inflammation but i dont think its that.

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Andy

If you have EDS, request to see a specialist as this sort of stuff is usually beyond the GP but one thing I have discovered about the NHS you want action you have to fight for it and even perhaps if you can, go down the route of self diagnosis, research for yourself and tell them what you have found out, they usually become interested when you find what your issue is, it sort of embarrases them into action.

 

I have found this is the method to use following myself being forced to research , self diagnose and tell the GP I wanted the tests, expensive tests at that, but I knew what was needed through internet research. The result my GP was impressed I had discovered a rare genetic abnormality which answers everything they are now super keen to help me where before it was the feeling I was being believed to be an attention seeker.

 

When you discover something which might be what you experience, seek out an online support group, join and ask questions as you will find there are no better informed people anywhere than those that experience a condition for they all seem to have narrow beam almost autistic like focus on their own condition and are likely to be very helpful.

 

But any test they request you do, ask them what it's for and what they tell you, google it and conditions around what they are testing for as you will be able to understand how they are thinking.

 

But there is a clue to start with, research around EDS for similar conditions that allow your joints to be that flexible, even join specific condition support groups and ask questions.

 

But some places I  found useful in my successful personal quest;

 

Patient.co.uk - surprisingly reasonably helpful for the dumbed down UK patient approach

 

Right Diagnosis - symptom checkers

 

WebMD - stay on the American side of the site - more information, not as dumbed down.

 

PubMed - medical research documents

 

Orphanet Journal of Rare Diseases - anything out of the ordinary

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Sofi

Andy has been very helpful with this  :)

 

I have often questioned whether or not I have Fibromyalgia (I'm not sure with EDS is) but have never been to my doctor with this, due mainly to my lack of faith in them :( I have mostly done online research as well. 

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Andy

Dr Google actually helps physicians do their job and from my point of view I go along the principle that doctor does not automatically know best as I proved and so my sense of my healthcare is I am fully informed and through training myself ij genetics and endocrinology I expect to be talked to on the level, they dumb it down, they lose my respect and I will go elsewhere.

 

One GP I had actually said he enjoys talking to me because I understand a lot more than most where I said to him we work together or not at all, you are a technical mind that can help with what I don't yet understand and the facilitator, but I am 100 % interested in my healthcare ad would prefer not to leave it to others as doing that has caused my twenty years of mental anguish.

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But I told her she told me she tested and don't have it. It's hard for me to fight though I list my symptoms but still says dont have. I just have to wait until I move my friend thinks I have both

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mary

I'm finding it a bit hard to think that a general doctor would do tests for EDS or diagnose as there are only two centres in the UK where you can get a diagnosis as far as I'm aware... London and Sheffield. I wonder why they have said that to you. There's loads of info online that you might find helpful. There's (I think) 5 different types of EDS with some being worse than others. It often gets misdiagnosed as fybromyalgia though so it might be worth you looking into it further. I think it's geneticists that diagnose.

I was diagnosed with chronic widespread pain / fibromyalgia late 2011 early 2012 but the pain wasn't getting any better even with medication. I then had some surgery last year and the wound wouldn't heal, in fact it was horrible and only a mole removal on my chest. I got fed up after weeks of trying to make this thing heal so I started looking things like that up.

Anyway long story short I found information about EDS and it started to make sense. So many things added up so I did some more research and finally went to the GP and asked him what he thought. He agreed it was worth looking into and looked into referring me on. It had to be a consultant referral so that took a bit longer, about 6 - 8 months in total. Finally got seen in Sheffield in December and was diagnosed with EDS - hypermobility.

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Andy
I'm finding it a bit hard to think that a general doctor would do tests for EDS or diagnose as there are only two centres in the UK where you can get a diagnosis as far as I'm aware... London and Sheffield. I wonder why they have said that to you. There's loads of info online that you might find helpful. There's (I think) 5 different types of EDS with some being worse than others. It often gets misdiagnosed as fybromyalgia though so it might be worth you looking into it further. I think it's geneticists that diagnose.

I was diagnosed with chronic widespread pain / fibromyalgia late 2011 early 2012 but the pain wasn't getting any better even with medication. I then had some surgery last year and the wound wouldn't heal, in fact it was horrible and only a mole removal on my chest. I got fed up after weeks of trying to make this thing heal so I started looking things like that up.

Anyway long story short I found information about EDS and it started to make sense. So many things added up so I did some more research and finally went to the GP and asked him what he thought. He agreed it was worth looking into and looked into referring me on. It had to be a consultant referral so that took a bit longer, about 6 - 8 months in total. Finally got seen in Sheffield in December and was diagnosed with EDS - hypermobility.

Well done Oakers !

 

I had an involuntary face lift yesterday as I had a mole removed and true to form as I expected the local anaesthetic made me sleep but only for a short while this time and the wound is healing quite fast, but then I don't have EDS, but yesterday it was painful and nasty and I can't even imagine how horrible that would have been for an EDS affected person !  But anyway that's some wrinkles gone.

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specialstar
I'm finding it a bit hard to think that a general doctor would do tests for EDS or diagnose as there are only two centres in the UK where you can get a diagnosis as far as I'm aware... London and Sheffield. I wonder why they have said that to you. There's loads of info online that you might find helpful. There's (I think) 5 different types of EDS with some being worse than others. It often gets misdiagnosed as fybromyalgia though so it might be worth you looking into it further. I think it's geneticists that diagnose.

I was diagnosed with chronic widespread pain / fibromyalgia late 2011 early 2012 but the pain wasn't getting any better even with medication. I then had some surgery last year and the wound wouldn't heal, in fact it was horrible and only a mole removal on my chest. I got fed up after weeks of trying to make this thing heal so I started looking things like that up.

Anyway long story short I found information about EDS and it started to make sense. So many things added up so I did some more research and finally went to the GP and asked him what he thought. He agreed it was worth looking into and looked into referring me on. It had to be a consultant referral so that took a bit longer, about 6 - 8 months in total. Finally got seen in Sheffield in December and was diagnosed with EDS - hypermobility.

It's possible to have both I have the symptoms of fibromyalgia as well as EDS

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mary
It's possible to have both I have the symptoms of fibromyalgia as well as EDS

 

Yes, you can have both but my point was that EDS is often misdiagnosed as fybromyalgia.  Not that it is a common diagnosis as far as I'm aware (EDS that is).

 

If you've not been to see a geneticist at one of the specialist centres in Sheffield or London I'd ask to be referred there if you think you have EDS, although I had to have a referral from a consultant rheumatologist, so you may need someone other than your GP refer you.

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