Ehlers danlos syndrome

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mangosmoothie
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#1
Report Thread starter 1 month ago
#1
Hi, I was wondering if anyone else had any advice/personal experience with eds. I have already been diagnosed with pots, mitral valve prolapse and mitral valve regurgitation by my cardiologist, which I am aware is common with eds. My mum has managed to get me an initial appointment with a geneticist, in January, after being originally referred in October. My symptoms are very severe at the moment, I have been hospitalised for a week due to fainting so frequently in November, and it still happens very regularly (once a day most days, though sometimes more or less). My pads consultant, who (supposedly) specialises in pots, has referred me to a national specialist who normally only sees over 16s as he "has never seen anyone deteriorate so quickly as me" and doesn't really know what to do anymore. I haven't been to school in over a month, and am pretty much wheelchair bound when not at home due to the frequency of my fainting/collapsing, fatigue etc. I am hoping the pots specialist will agree medication could be an option for me, or can think of another treatment option. I have also dislocated my shoulder a few times now, including yesterday, when my GP told me I have been walking round with a dislocated shoulder without realising, despite being in excoriating pain (well now I know why)! I am also very hyper mobile, have clicking joints and pain in my neck, knee, hip and shoulder. I also have gi issues, such as stomach pain, extreme nausea and constipation. Thank you for reading this.
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_Rusty_
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#2
Report 4 weeks ago
#2
(Original post by mangosmoothie)
Hi, I was wondering if anyone else had any advice/personal experience with eds. I have already been diagnosed with pots, mitral valve prolapse and mitral valve regurgitation by my cardiologist, which I am aware is common with eds. My mum has managed to get me an initial appointment with a geneticist, in January, after being originally referred in October. My symptoms are very severe at the moment, I have been hospitalised for a week due to fainting so frequently in November, and it still happens very regularly (once a day most days, though sometimes more or less). My pads consultant, who (supposedly) specialises in pots, has referred me to a national specialist who normally only sees over 16s as he "has never seen anyone deteriorate so quickly as me" and doesn't really know what to do anymore. I haven't been to school in over a month, and am pretty much wheelchair bound when not at home due to the frequency of my fainting/collapsing, fatigue etc. I am hoping the pots specialist will agree medication could be an option for me, or can think of another treatment option. I have also dislocated my shoulder a few times now, including yesterday, when my GP told me I have been walking round with a dislocated shoulder without realising, despite being in excoriating pain (well now I know why)! I am also very hyper mobile, have clicking joints and pain in my neck, knee, hip and shoulder. I also have gi issues, such as stomach pain, extreme nausea and constipation. Thank you for reading this.
No one on here can give medical advice however the EDS charity is absolutely amazing at giving EDS-specific advice. Speak to them, Im seeing a rheumatologist in March (probably will change due to Covid) however that only uappened vecause they advised me.

All the best
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Pathway
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#3
Report 4 weeks ago
#3
I'm diagnosed with EDS and various comorbidities (POTS, MCAS, Gastroparesis, etc.). Got any questions, I'll try and answer them, been diagnosed with EDS for around 10 years now.
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_Rusty_
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#4
Report 4 weeks ago
#4
(Original post by Pathway)
I'm diagnosed with EDS and various comorbidities (POTS, MCAS, Gastroparesis, etc.). Got any questions, I'll try and answer them, been diagnosed with EDS for around 10 years now.
Do you have hEDS?
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Pathway
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#5
Report 4 weeks ago
#5
(Original post by chris01928)
Do you have hEDS?
Technically the EDS National Diagnostic Service think I have clEDS, but I do pass criteria for hEDS as well.
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_Rusty_
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#6
Report 4 weeks ago
#6
(Original post by Pathway)
Technically the EDS National Diagnostic Service think I have clEDS, but I do pass criteria for hEDS as well.
Ahh ok, it just gets that bit more confusing :lol:

I'm in the process of being diagnosed - Been referred to Rheumatology however a 6-month wait is seeming to turn into 10 months so I have a while to wait for a formal diagnosis however everything and every other HCP I have seen seems to think I have hEDS.

Can I ask, how do you manage pain?

Feel free to not answer just sorta trying to find my feet in the world of hypermobile pain management
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Pathway
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#7
Report 4 weeks ago
#7
(Original post by chris01928)
Ahh ok, it just gets that bit more confusing :lol:

I'm in the process of being diagnosed - Been referred to Rheumatology however a 6-month wait is seeming to turn into 10 months so I have a while to wait for a formal diagnosis however everything and every other HCP I have seen seems to think I have hEDS.

Can I ask, how do you manage pain?

Feel free to not answer just sorta trying to find my feet in the world of hypermobile pain management
Physiotherapy, heat pads, ice packs, medication (Tramadol as needed; Etoricoxib and Paracetamol multiple times daily), distraction, bracing, etc. Chronic pain management requires a multimodal approach to help us as patients manage it.

My perception of pain is kind of messed up, broken my foot and still walked on it, have repeated dislocations daily etc. :dontknow: The pain that gets me the most is my GI pain, due to dysmotility, and that's why I have to limit opioids, because they slow down the GI tract.

It's all very complicated.

I hope you get answers soon. Feel free to message me if you want. Take care!
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_Rusty_
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#8
Report 4 weeks ago
#8
(Original post by Pathway)
Physiotherapy, heat pads, ice packs, medication (Tramadol as needed; Etoricoxib and Paracetamol multiple times daily), distraction, bracing, etc. Chronic pain management requires a multimodal approach to help us as patients manage it.

My perception of pain is kind of messed up, broken my foot and still walked on it, have repeated dislocations daily etc. :dontknow: The pain that gets me the most is my GI pain, due to dysmotility, and that's why I have to limit opioids, because they slow down the GI tract.

It's all very complicated.

I hope you get answers soon. Feel free to message me if you want. Take care!
Thank you, yes, I have dysmotility too, its ome of those sharp pains that comes all of a sudden and makes you go intp the wierdewt postions.

The only things i have atm are a hor water bottle and naproxen, theres a lot that I still need to learn.

Thank you
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mangosmoothie
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#9
Report Thread starter 2 weeks ago
#9
(Original post by Pathway)
I'm diagnosed with EDS and various comorbidities (POTS, MCAS, Gastroparesis, etc.). Got any questions, I'll try and answer them, been diagnosed with EDS for around 10 years now.
Thank you! I actually have been told gp is a possible diagnosis, do you know if there's any helpful meds? At the moment I'm on omeprozole and cyclizine hydrochloride (probably wrong spelling ), and am still not managing a normal diet. I also have frequent reactions to random, sometimes unknown, things, so that could also be related I guess. Thank you so much again, I hope your symptoms are under control xxx
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Pathway
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#10
Report 2 weeks ago
#10
(Original post by mangosmoothie)
Thank you! I actually have been told gp is a possible diagnosis, do you know if there's any helpful meds? At the moment I'm on omeprozole and cyclizine hydrochloride (probably wrong spelling ), and am still not managing a normal diet. I also have frequent reactions to random, sometimes unknown, things, so that could also be related I guess. Thank you so much again, I hope your symptoms are under control xxx
I assume you're talking about Gastroparesis?

I'm on a few medications to manage it. Prochlorperazine and Ondansetron alternated throughout the day, Domperidone for motility and I am also on Lansoprazole and Famotidine (the Famotidine is more because of MCAS). I'm also not really managing a "normal" diet either, I still need Fortisip etc. MCAS makes the whole thing more difficult too, and I'm on quite a lot of medication to manage that, things are much better from that POV compared to how it was, but I'm still quite affected.

It's a lot of trial and error managing all the separate symptoms from all the different diagnoses. Feel free to message me if you like.
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mangosmoothie
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#11
Report Thread starter 2 weeks ago
#11
(Original post by Pathway)
I assume you're talking about Gastroparesis?

I'm on a few medications to manage it. Prochlorperazine and Ondansetron alternated throughout the day, Domperidone for motility and I am also on Lansoprazole and Famotidine (the Famotidine is more because of MCAS). I'm also not really managing a "normal" diet either, I still need Fortisip etc. MCAS makes the whole thing more difficult too, and I'm on quite a lot of medication to manage that, things are much better from that POV compared to how it was, but I'm still quite affected.

It's a lot of trial and error managing all the separate symptoms from all the different diagnoses. Feel free to message me if you like.
Yes, I am, sorry I should have said the full word. I was on ondansetron in hospital, but they decided to try something different, so now I take omeprazole twice a day and cyclizine three times a day. I haven't tried fortisip yet, atm I'm eating one normal meal a day, smoothies and snacks to be honest, anything more than that and I will just be sick. I have lost weight too, which isn't really a surprise considering what I'm eating. I am seeing genetics on the 25th, I think my cardiologist must have thought I have a rare type of eds? I only really meet the criteria for heds, ceds or possibly marfans so that's odd, but I do have a surprising amount of the vascular eds facial features, which is maybe why she was concerned. Thank you for the advice
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mangosmoothie
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#12
Report Thread starter 2 weeks ago
#12
(Original post by chris01928)
No one on here can give medical advice however the EDS charity is absolutely amazing at giving EDS-specific advice. Speak to them, Im seeing a rheumatologist in March (probably will change due to Covid) however that only uappened vecause they advised me.

All the best
I know, I had a thread deleted for that a while ago as people were giving me medical advice, despite only asking about how to go back to school (this was in September before my symptoms got awful). I think you actually private messaged me to tell me to look into eds, which was so nice of you, as I probably wouldn't have yet if it wasn't for your message! Thanks again, I hope you get a diagnosis and some treatment!
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_Rusty_
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#13
Report 2 weeks ago
#13
(Original post by mangosmoothie)
I know, I had a thread deleted for that a while ago as people were giving me medical advice, despite only asking about how to go back to school (this was in September before my symptoms got awful). I think you actually private messaged me to tell me to look into eds, which was so nice of you, as I probably wouldn't have yet if it wasn't for your message! Thanks again, I hope you get a diagnosis and some treatment!
Aww no problem. All the best:hugs:
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mangosmoothie
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#14
Report Thread starter 5 days ago
#14
(Original post by _Rusty_)
Aww no problem. All the best:hugs:
Thank you, same goes to you!!
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