EDS Awareness Month AMA

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DiddyDec
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#21
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#21
(Original post by Pathway)
Electric heat pads haha, mast cell doesn't play too well with many things for me (e.g. adhesives, cream, etc). Also don't weigh as much compared to hot water bottles so less dislocations. However, when I need to go out but need heat there are these stick on heat pads I use called Hoteez (I think?), and I deal with the reactions instead for pain relief. :lol:


Oh man, I know right? Sucks. The EDS Society has put things on their YouTube channel which might help?
I have been known to use adhesive heat pads, thanks for the tips.

I seem to have torn a ligament in my arm but I can't get it checked physically. I'm now on Naproxen with a near constant wrist brace that I hate, naturally. I will check out their channel though they might have something of use.
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Pathway
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#22
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#22
(Original post by DiddyDec)
I have been known to use adhesive heat pads, thanks for the tips.

I seem to have torn a ligament in my arm but I can't get it checked physically. I'm now on Naproxen with a near constant wrist brace that I hate, naturally. I will check out their channel though they might have something of use.
You're welcome! Hope they help. They actually heat up for me which is a plus and they stay hot too lol.

Sorry to hear about the torn ligament, my wrists are all kinds of messed up so I relate. What have your doctors said to do outside of bracing?
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DiddyDec
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#23
(Original post by Pathway)
You're welcome! Hope they help. They actually heat up for me which is a plus and they stay hot too lol.

Sorry to hear about the torn ligament, my wrists are all kinds of messed up so I relate. What have your doctors said to do outside of bracing?
Take Naproxen and rest it, all well and good but I live alone and have a full time job so it doesn't get a lot of rest. Once I have finished my course of Naproxen I will hopefully be able to set an actual appointment because I don't feel like it is healing.
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Pathway
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(Original post by DiddyDec)
Take Naproxen and rest it, all well and good but I live alone and have a full time job so it doesn't get a lot of rest. Once I have finished my course of Naproxen I will hopefully be able to set an actual appointment because I don't feel like it is healing.
that sounds frustrating. I hope they do something. :hugs:
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xoxAngel_Kxox
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I don't have any questions (I mean, I would love to know more, I'm just rubbish of thinking of questions) I just wanted to say .. *hugs*.
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Pathway
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(Original post by xoxAngel_Kxox)
I don't have any questions (I mean, I would love to know more, I'm just rubbish of thinking of questions) I just wanted to say .. *hugs*.
It's okay. thank you for the support, when you deal with something like EDS having support is crucial to quality of life I've found.
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Anonymous #1
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#27
is EDS the same as joint hypermobilty syndrome? I've had doctors use the term interchangeably but anyone I've met with EDS seems to have more severe symptoms.
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Pathway
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(Original post by Anonymous)
is EDS the same as joint hypermobilty syndrome? I've had doctors use the term interchangeably but anyone I've met with EDS seems to have more severe symptoms.
JHS is a defunct diagnosis as of 2017, it was "replaced" by Hypermobility Spectrum Disorder. HSDs can be just as severe as hEDS, the difference is the patient doesn't have enough connective tissue disorder signs (signs =/= symptoms). They are separate now. Previously some said that JHS/HMS/BJHS/EDS3, etc. were the same. Personally I don't really agree with this division tbh but eh. I'm not a clinician.

Should also note that whilst I meet clinical criteria for hEDS, I also meet clinical criteria for a few of the other types (there are like 13 other types that have known genetic variants, hEDS doesn't despite being the most common type), so I'm waiting for genetics with the EDS National Diagnostic Service so my experience isn't really "typical" if that makes sense. I'm technically diagnosed with untyped EDS, and have been pretty much since I was initially diagnosed in 2012.
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Anonymous #1
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#29
(Original post by Pathway)
JHS is a defunct diagnosis as of 2017, it was "replaced" by Hypermobility Spectrum Disorder. HSDs can be just as severe as hEDS, the difference is the patient doesn't have enough connective tissue disorder signs (signs =/= symptoms). They are separate now. Previously some said that JHS/HMS/BJHS/EDS3, etc. were the same. Personally I don't really agree with this division tbh but eh. I'm not a clinician.

Should also note that whilst I meet clinical criteria for hEDS, I also meet clinical criteria for a few of the other types (there are like 13 other types that have known genetic variants, hEDS doesn't despite being the most common type), so I'm waiting for genetics with the EDS National Diagnostic Service so my experience isn't really "typical" if that makes sense. I'm technically diagnosed with untyped EDS, and have been pretty much since I was initially diagnosed in 2012.
Ok that's really interesting. I've been said to have EDS-III but I personally identify more with Hypermobility Spectrum Disorder. Some days I can't walk without extreme pain and I drop things a lot but I'm not wheelchair-bound or unable to lift my head etc. Thanks
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Pathway
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(Original post by Anonymous)
Ok that's really interesting. I've been said to have EDS-III but I personally identify more with Hypermobility Spectrum Disorder. Some days I can't walk without extreme pain and I drop things a lot but I'm not wheelchair-bound or unable to lift my head etc. Thanks
Well, you don't have to be a wheelchair user or unable to lift your head to have EDS (any variant). If you think you have EDS or HSD, then it's best to get a thorough evaluation to rule everything in or out first. You can be relatively mildly affected with hEDS (and some of the other EDS types tbf), whereas I know of people completely debilitated by HSD. It's not cut and dry.
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Anonymous #1
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(Original post by Pathway)
Well, you don't have to be a wheelchair user or unable to lift your head to have EDS (any variant). If you think you have EDS or HSD, then it's best to get a thorough evaluation to rule everything in or out first. You can be relatively mildly affected with hEDS (and some of the other EDS types tbf), whereas I know of people completely debilitated by HSD. It's not cut and dry.
How do you get this testing?

It took me until the age of 20 to get a diagnosis from a private physiotherapist. This was later certified by a consultant on NHS referral for a lump in my back. I've had so many problems throughout my life I'm shocked it wasn't diagnosed sooner. I lose feeling in my arms as a result and have a terrible quality of life filled with pain and my doctors are pretty unresponsive. Do I just go to the wrong doctors surgery that don't refer anyone for anything lol
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Pathway
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#32
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#32
(Original post by Anonymous)
How do you get this testing?

It took me until the age of 20 to get a diagnosis from a private physiotherapist. This was later certified by a consultant on NHS referral for a lump in my back. I've had so many problems throughout my life I'm shocked it wasn't diagnosed sooner. I lose feeling in my arms as a result and have a terrible quality of life filled with pain and my doctors are pretty unresponsive. Do I just go to the wrong doctors surgery that don't refer anyone for anything lol
Some people have particularly bad access to specialists. First port of call in the NHS is a rheumatologist to rule things in/out, after that then they may or may not diagnose you (some don't feel comfortable, and some are not up to date). Depending on how affected you are you could ask for a referral to Stanmore or UCLH (I'm pretty sure they're still closed to new patients though).

Most people don't get genetic testing on the NHS I was just a serial refuser for some reason when I was younger, hence why I am doing it now. It's not essential.

There is the EDS Toolkit over on RCGPs website. Every GP should've had this emailed to them last year when it was created.

Different areas have different levels of provision. London is very well served, has a lot of different EDS aware specialists, other areas, not so much.
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Anonymous #2
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I've got EDS too!

I find it so annoying when people say "there's nothing wrong with you, you look fine, your not in a wheelchair etc".
What people don't understand is it is an invisible genetic illness. I really appreciate this thread as you are spreading great awareness about the condition.

Thx you xx
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Anonymous #1
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#34
(Original post by Pathway)
Some people have particularly bad access to specialists. First port of call in the NHS is a rheumatologist to rule things in/out, after that then they may or may not diagnose you (some don't feel comfortable, and some are not up to date). Depending on how affected you are you could ask for a referral to Stanmore or UCLH (I'm pretty sure they're still closed to new patients though).

Most people don't get genetic testing on the NHS I was just a serial refuser for some reason when I was younger, hence why I am doing it now. It's not essential.

There is the EDS Toolkit over on RCGPs website. Every GP should've had this emailed to them last year when it was created.

Different areas have different levels of provision. London is very well served, has a lot of different EDS aware specialists, other areas, not so much.
THanks, you've highlighted some routes I haven't even heard of before. Resentfully (not at you, at my reluctant doctors) I think I'll pay privately to get some actual advice and help. The fact I don't even know what the name of what I have is ridiculous and im tired of living in pain.
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Anonymous #2
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(Original post by Anonymous)
THanks, you've highlighted some routes I haven't even heard of before. Resentfully (not at you, at my reluctant doctors) I think I'll pay privately to get some actual advice and help. The fact I don't even know what the name of what I have is ridiculous and im tired of living in pain.
It took 12 years for me to be diagnosed. I had to go private in the end as the GPs were completely disinterested. 12 years of indescribable pain, not being taken seriously etc, it was heartbreaking!
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Anonymous #1
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#36
(Original post by Anonymous)
It took 12 years for me to be diagnosed. I had to go private in the end as the GPs were completely disinterested. 12 years of indescribable pain, not being taken seriously etc, it was heartbreaking!
I'm sorry this happened to you!!!!!

I'm facing difficulty in my full-time job and haven't had a life for years because I come home exhausted and in pain. I've decided I'm worth more than that and want to get help. annoying we have to pay to get whats needed.
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Pathway
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#37
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#37
(Original post by Anonymous)
THanks, you've highlighted some routes I haven't even heard of before. Resentfully (not at you, at my reluctant doctors) I think I'll pay privately to get some actual advice and help. The fact I don't even know what the name of what I have is ridiculous and im tired of living in pain.
Good luck. I didn't go private, I do know of people who have though. Usually they have a good standard of care.

(Original post by Anonymous)
I've got EDS too!

I find it so annoying when people say "there's nothing wrong with you, you look fine, your not in a wheelchair etc".
What people don't understand is it is an invisible genetic illness. I really appreciate this thread as you are spreading great awareness about the condition.

Thx you xx
I'm sorry. Sounds really frustrating.

I hope things are stable for you currently!
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DiddyDec
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#38
(Original post by Anonymous)
THanks, you've highlighted some routes I haven't even heard of before. Resentfully (not at you, at my reluctant doctors) I think I'll pay privately to get some actual advice and help. The fact I don't even know what the name of what I have is ridiculous and im tired of living in pain.
I would recommend seeing a private rheumatologist unless you want to spend the best part of a year or longer on an NHS waiting list.
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