Ehlers Danlos Syndrome, POTS and Missing Referrals

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remarius
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ETA - There is no PALS service in Northern Ireland, so I can't use or get in contact with PALS. Similarly, there are no POTS or (as far as I have researched) EDS specialists and there is one tilt table in the whole of NI, that's apparently nearly impossible to get tested with. Our services are not anywhere near the standard they should be, or the standard of the rest of the UK. We have no ME/CFS doctor or clinics, and I have been told there is no CBT for ADD by my psych consultant, and I have to hope a charity can help me instead. So I have been taken off the meds I need, and left with no other support for managing at least one of my conditions because simply, there isn't any.

So I've now been made aware after asking for a cardiology referral for POTS (after being told by Irish cardiologists to get it diagnosed on the NHS but I have POTS after an A&E trip whilst I was studying) that it was never made after I was told it was going to be made. And that my psych doctor who demanded cardiology had to sign me off before putting me back on the meds I need and my mum was told had made the referral has not seem to have made the referral, it now means cardiology has refused to see me 4 times. The initially refused to see me when I was taken into A&E in N. Ireland with chest pain, palpitations and tachycardia - my resting rate was 140bpm but dropped to 110-120bpm with fluids. Since then I've had a holter monitor done and been told to take beta blockers as I'm obviously anxious and its just anxiety and they can't explain why I'm still tachycardic even when I'm clearly not anxious (but the Irish doctors worked it out nearly straight away)

I'm annoyed, I need my meds that I'm being kept off. Had they been properly monitored I'd never have been in this mess. I am now at risk of failing my second year at college due to not having my meds and being taken off them cold turkey after 6 years on them, and being told I'd be put back on something before exams.

On top of that, I'm hypermobile and now suffering a lot of unexplained pain in my hips (my shoulder is explained) and have quite a few features of EDS, as well as bendy family members. EDS and POTS are comorbid, and I have asked for a referral only to be told 'Oh, I'll have to look up who to refer you too for that because I don't know and I'll ring you.' only to never get a phone call. Given that I know there are different types of EDS and its genetic, and that right now it doesn't impact on my life to the point I need a lot of care (I just need physio) I'd rather make sure I don't have a type that needs more monitoring likes vEDS or cvEDS or even cEDS or that I don't get to the point I am in a lot more pain and unable to do the things I enjoy doing, I already may have to stop playing rugby.

And on top of that, I've finally not been dismissed about my sleep issues and told I'll be referred for a sleep study. I don't know if I'm narcoleptic or not, but have a narcoleptic friend who suspects it after seeing how I am without my meds. However, as the cardiology referral hasn't been done, I highly doubt this one has been done either.

I can't afford to go private for all these investigations, I've just had to pay out privately get my shoulder MRI'd and I can't afford to do the rest of them privately. I had to get my shoulder done as I had 90 degrees movement and a lot of pain and had already been waiting 6 months for my referral, and was told I'd be waiting another few months at least when I asked.

I don't know what to do anymore. I have no trust in doctors to the point it really gives me anxiety because I KNOW something is wrong and my body isn't working as it should be, but doctors won't listen to me and think I'm just anxious and need to stop reading online, just because they don't understand or know what a condition is. I have had ONE NHS doctor actually talk to me with some knowledge of POTS, yet all 5 of the doctors I've seen in Ireland through the college GPs or A&E were familiar with POTS. I wish I could use the Irish system, but the waiting times are as long, if not longer, and I can't afford to pay for private health care to access the services I need there either.

Sorry, I'm ranting.

Anyone know who I should ask to see for an EDS and/or POTS referral as doctors don't know and don't want to look into it, and cardiology are refusing to see me?
Last edited by remarius; 2 years ago
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Pathway
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...hmm have you been in contact with PALS? It seems kinda bizarre that you keep having cardiology referrals blocked. In the mean time, have you been seen by rheumatology? I'd try not to worry about if you have any of the more cardiac leaning variants, all forms of EDS are supposed to have regular echos, some just more than others. That and the forms you've listed (aside from cEDS) are incredibly rare, and whilst it's natural to be worried it's quite unlikely you have them.

I'd get in contact with EDS UK. I don't know of any dysautonomia specialists or EDS specialists based in NI unfortunately. Wish I could be of more help.
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...hmm have you been in contact with PALS? It seems kinda bizarre that you keep having cardiology referrals blocked. In the mean time, have you been seen by rheumatology? I'd try not to worry about if you have any of the more cardiac leaning variants, all forms of EDS are supposed to have regular echos, some just more than others. That and the forms you've listed (aside from cEDS) are incredibly rare, and whilst it's natural to be worried it's quite unlikely you have them.

I'd get in contact with EDS UK. I don't know of any dysautonomia specialists or EDS specialists based in NI unfortunately. Wish I could be of more help.
I don't think there are any specialists, which is part of the problem. I did find a specialist in Dublin who I got in contact with, but told me without private health care she wouldn't see me as she was too expensive and to use the NHS instead. I've looked it up in terms of POTS and the one nurse listed for NI seems to have retired. We also don't have any ME/CFS doctors or clinics either, as I realistically also need to see someone there as well as seeing someone regarding possible narcolepsy - I 100% think my POTS is secondary and linked to a sleep disorder as days when I am struggling to stay awake my POTS is worse.

Cardiology are blocking me or referrals aren't being made as they're not concerned. I have no arrhythmia, just tachy so they have no reason to see me as they say its anxiety as I have a mental health history (because ADD is treated as a mental health condition, not a learning disability - I have never been diagnosed with anxiety). I think my last ECG was nearly normal, because I was lying down. I had a Holter Monitor done in March and only know the results due to seeing a doctor who wasn't my psych doctor and wanted my thyroid redone based off a result from 3 years ago, despite more recent ones having been done that were fine. Holter monitor was fine, just tachy. Not even heard back from someone from cardiology about the results yet and I was just told no news is good news.

I did have an echo done by the Irish services which confirmed everything is 100%, and that I'm just tachy but I was told that was due to POTS.

Rheumatology hasn't even been mentioned yet, so next time I'm at the GP I will bring it up again, demonstrate walking on the sides of my feet, being able to reach round all of my back etc. as well as the Beighton criteria and ask for a rheumatology referral. I need to see someone for my hip as when its bad it impacts on my job and movement and I have no history of trauma to my right hip. I'd rather just get all forms ruled out, because there's absolutely no harm in that and as I have a bendy brother would be good for me to know so he knows if it's just JHS or hEDS. My gastric system is also effected, which I think is contributing to not being able to lose weight and possibly being tired all the time too. I'm only awake right now as the house is freezing and cold keeps me awake.
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Pathway
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(Original post by remarius)
I don't think there are any specialists, which is part of the problem. I did find a specialist in Dublin who I got in contact with, but told me without private health care she wouldn't see me as she was too expensive and to use the NHS instead. I've looked it up in terms of POTS and the one nurse listed for NI seems to have retired. We also don't have any ME/CFS doctors or clinics either, as I realistically also need to see someone there as well as seeing someone regarding possible narcolepsy - I 100% think my POTS is secondary and linked to a sleep disorder as days when I am struggling to stay awake my POTS is worse.

Cardiology are blocking me or referrals aren't being made as they're not concerned. I have no arrhythmia, just tachy so they have no reason to see me as they say its anxiety as I have a mental health history (because ADD is treated as a mental health condition, not a learning disability - I have never been diagnosed with anxiety). I think my last ECG was nearly normal, because I was lying down. I had a Holter Monitor done in March and only know the results due to seeing a doctor who wasn't my psych doctor and wanted my thyroid redone based off a result from 3 years ago, despite more recent ones having been done that were fine. Holter monitor was fine, just tachy. Not even heard back from someone from cardiology about the results yet and I was just told no news is good news.

I did have an echo done by the Irish services which confirmed everything is 100%, and that I'm just tachy but I was told that was due to POTS.

Rheumatology hasn't even been mentioned yet, so next time I'm at the GP I will bring it up again, demonstrate walking on the sides of my feet, being able to reach round all of my back etc. as well as the Beighton criteria and ask for a rheumatology referral. I need to see someone for my hip as when its bad it impacts on my job and movement and I have no history of trauma to my right hip. I'd rather just get all forms ruled out, because there's absolutely no harm in that and as I have a bendy brother would be good for me to know so he knows if it's just JHS or hEDS. My gastric system is also effected, which I think is contributing to not being able to lose weight and possibly being tired all the time too. I'm only awake right now as the house is freezing and cold keeps me awake.
If you have EDS any dysautonomia would be secondary to it, not the narcolepsy. Plus EDS can cause sleep/wake disorders as well.

I'm sorry that cardiology keep dismissing you, I really would talk with a patient liaison service. They often are able to talk and mediate between you and specialists. Might be worth searching up your trust and PALS in Google. Even with history of mental illness/ADD they shouldn't be dismissing you, I have an extensive MH history and I'm still seen by cardiology. :s

Can understand that you want things ruled out, but that's not how things are done on the NHS if you have no red flags they generally won't even bring up genetic testing during a consultation even if they agree you have (h)EDS or HSD. It is incredibly costly. There's only a few places that do it and you have to be a very steong case to be referred to them. I was only suggested genetic testing because of red flags that I present with and family history of pertinent events. It really is unlikely that you have one of the more rare forms, especially if your heart is doing OK rn and if your family history is relatively clear.

Do bring up the EDS Toolkit made by the Royal College or GPs. That gives a general guideline on what to do with diagnosed or suspected EDS patients. Your GP should've been emailed a copy of it.
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Kindred
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So I've now been made aware after asking for a cardiology referral for POTS (after being told by Irish cardiologists to get it diagnosed on the NHS but I have POTS after an A&E trip whilst I was studying) that it was never made after I was told it was going to be made. And that my psych doctor who demanded cardiology had to sign me off before putting me back on the meds I need and my mum was told had made the referral has not seem to have made the referral, it now means cardiology has refused to see me 4 times. The initially refused to see me when I was taken into A&E in N. Ireland with chest pain, palpitations and tachycardia - my resting rate was 140bpm but dropped to 110-120bpm with fluids. Since then I've had a holter monitor done and been told to take beta blockers as I'm obviously anxious and its just anxiety and they can't explain why I'm still tachycardic even when I'm clearly not anxious (but the Irish doctors worked it out nearly straight away)

I'm annoyed, I need my meds that I'm being kept off. Had they been properly monitored I'd never have been in this mess. I am now at risk of failing my second year at college due to not having my meds and being taken off them cold turkey after 6 years on them, and being told I'd be put back on something before exams.

On top of that, I'm hypermobile and now suffering a lot of unexplained pain in my hips (my shoulder is explained) and have quite a few features of EDS, as well as bendy family members. EDS and POTS are comorbid, and I have asked for a referral only to be told 'Oh, I'll have to look up who to refer you too for that because I don't know and I'll ring you.' only to never get a phone call. Given that I know there are different types of EDS and its genetic, and that right now it doesn't impact on my life to the point I need a lot of care (I just need physio) I'd rather make sure I don't have a type that needs more monitoring likes vEDS or cvEDS or even cEDS or that I don't get to the point I am in a lot more pain and unable to do the things I enjoy doing, I already may have to stop playing rugby.

And on top of that, I've finally not been dismissed about my sleep issues and told I'll be referred for a sleep study. I don't know if I'm narcoleptic or not, but have a narcoleptic friend who suspects it after seeing how I am without my meds. However, as the cardiology referral hasn't been done, I highly doubt this one has been done either.

I can't afford to go private for all these investigations, I've just had to pay out privately get my shoulder MRI'd and I can't afford to do the rest of them privately. I had to get my shoulder done as I had 90 degrees movement and a lot of pain and had already been waiting 6 months for my referral, and was told I'd be waiting another few months at least when I asked.

I don't know what to do anymore. I have no trust in doctors to the point it really gives me anxiety because I KNOW something is wrong and my body isn't working as it should be, but doctors won't listen to me and think I'm just anxious and need to stop reading online, just because they don't understand or know what a condition is. I have had ONE NHS doctor actually talk to me with some knowledge of POTS, yet all 5 of the doctors I've seen in Ireland through the college GPs or A&E were familiar with POTS. I wish I could use the Irish system, but the waiting times are as long, if not longer, and I can't afford to pay for private health care to access the services I need there either.

Sorry, I'm ranting.

Anyone know who I should ask to see for an EDS and/or POTS referral as doctors don't know and don't want to look into it, and cardiology are refusing to see me?
Oh boy you really aren't having a good time are you!

First off as a bit of general background since I don't know how much you know about POTS/ EDS and it can be hard to find anybody who knows much on the NHS. hEDS is a hypermobile form of EDS and has no genetic test. The other types do have genetic tests, but are pretty rare and unless you have any particular signs of them or pay yourself you are unlikely to be tested for them. I was told that most people with POTS have hypermobility type so unless you have any particular signs of the others I wouldn't worry about that.
You can find advice and info on EDS on the EDSUK website https://www.ehlers-danlos.org/
And the diagnostic criteria here https://www.ehlers-danlos.com/heds-d...tic-checklist/
If you don't fit the diagnostic criteria for hEDS, but still have a lot of signs of it you will likely be diagnosed with a form of hypermobility spectrum disorder. It's basically the same stuff, but a different name because the main feature of both things is hypermobility and we don't even know for sure that they aren't all the same thing (since there isn't a genetic marker or any other solid proof of hEDS vs other hypermobilty).

POTS is a form of dysautonomia where your body can't control your heart rate well. It seems you already have a reasonable idea that you have POTS, but you can find the criteria and info (including a print out for GPs) on the POTSUK website. https://www.potsuk.org/

People with hEDS will tend to have POTS and vica versa. there's no real reason found yet, but they do seem to be linked. People with either will also often have some level of gut and allergy issues. Hypermobility can affect your body in a lot more ways then people realise since it isn't just joints that can be hypermobile. Anything that involves connective tissue can be affected and that includes things like your gut. Since it's a bit of a different way for bodies to work it helps to see somebody who specialises in that.


Now for this whole mess you are in. I would start by booking a double appointment with your GP and laying it out for them. A double appointment will give you time to talk about stuff and make some progress without worrying about the time. Tell them about this whole screw up and ask for them to help you get on track. To get diagnosed you will want to see specialists who have knowledge of dysautonomia and hypermobilty. They are both a bit rare/ unique so even a cardiologist may not really get dysautonomia or a rheumatologist hEDS. The two websites I linked to have some lists and you can also google doctors to see what they specialise in. A doctor who specialises in either will likely also know of the other (since they are so linked) so if you see one they may well be able to help you sort out the other.
All of my stuff has been organised by my cardiologist because he has a special understanding of hypermobile people and knows specialists in other areas who also have a special understanding of it.
I would bring along any bits you have that support your request (anything the A&E doctor wrote, a home HR test that shows your HR increasing on standing, a print off from the websites etc). They may not want to see all of them, but if it does come up you will be ready.


So I would talk to your GP about getting at least one referral sorted for now to whichever is more pressing. It sounds like that will be the POTS so ask to be referred to a specialist who understands pots. You can use the list from pots UK to help find one. From there you, GP and cardiologist will hopefully be able to make progress with the EDS side of things. Or if your GP is able and willing you can try to get a referral to a rheumatologist who specialises in hypermobility too. This is often a long journey so pick your battles. It might take a while to get everything sorted and sometimes you'll need to focus on one thing and put another on hold for a bit to avoid a confusing mess.

If you really can't get things sorted with the NHS I would look into contacting pals or going for a couple of private appointments if possible. Sometimes just one or two private sessions can help give the NHS a kick up the bum and if you see the right specialist they can be good for telling you how to work with the system. There are a couple of cardiologists who can be good for that and should be willing to see you for just one appointment essentially so you can get a letter telling GP that you should be assessed for it. Some will also work on the NHS so you could be referred back to them,


Sorry for rambling a bit. I hope you can decipher what I mean. If you want some more specifics like who are good specialists in what area and some help going through the process of talking to PALS, going about the long journey etc I would join a facebook group. They can be very helpful for advice and also to vent to. I'll be happy to send you links to some if you PM me.


Good luck. I know how frustrating it can be trying to sort out chronic conditions. I hope you can get things moving soon.
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Pathway
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(Original post by Kindred)
Oh boy you really aren't having a good time are you!

First off as a bit of general background since I don't know how much you know about POTS/ EDS and it can be hard to find anybody who knows much on the NHS. hEDS is a hypermobile form of EDS and has no genetic test. The other types do have genetic tests, but are pretty rare and unless you have any particular signs of them or pay yourself you are unlikely to be tested for them. I was told that most people with POTS have hypermobility type so unless you have any particular signs of the others I wouldn't worry about that.
You can find advice and info on EDS on the EDSUK website https://www.ehlers-danlos.org/
And the diagnostic criteria here https://www.ehlers-danlos.com/heds-d...tic-checklist/
If you don't fit the diagnostic criteria for hEDS, but still have a lot of signs of it you will likely be diagnosed with a form of hypermobility spectrum disorder. It's basically the same stuff, but a different name because the main feature of both things is hypermobility and we don't even know for sure that they aren't all the same thing (since there isn't a genetic marker or any other solid proof of hEDS vs other hypermobilty).

POTS is a form of dysautonomia where your body can't control your heart rate well. It seems you already have a reasonable idea that you have POTS, but you can find the criteria and info (including a print out for GPs) on the POTSUK website. https://www.potsuk.org/

People with hEDS will tend to have POTS and vica versa. there's no real reason found yet, but they do seem to be linked. People with either will also often have some level of gut and allergy issues. Hypermobility can affect your body in a lot more ways then people realise since it isn't just joints that can be hypermobile. Anything that involves connective tissue can be affected and that includes things like your gut. Since it's a bit of a different way for bodies to work it helps to see somebody who specialises in that.


Now for this whole mess you are in. I would start by booking a double appointment with your GP and laying it out for them. A double appointment will give you time to talk about stuff and make some progress without worrying about the time. Tell them about this whole screw up and ask for them to help you get on track. To get diagnosed you will want to see specialists who have knowledge of dysautonomia and hypermobilty. They are both a bit rare/ unique so even a cardiologist may not really get dysautonomia or a rheumatologist hEDS. The two websites I linked to have some lists and you can also google doctors to see what they specialise in. A doctor who specialises in either will likely also know of the other (since they are so linked) so if you see one they may well be able to help you sort out the other.
All of my stuff has been organised by my cardiologist because he has a special understanding of hypermobile people and knows specialists in other areas who also have a special understanding of it.
I would bring along any bits you have that support your request (anything the A&E doctor wrote, a home HR test that shows your HR increasing on standing, a print off from the websites etc). They may not want to see all of them, but if it does come up you will be ready.


So I would talk to your GP about getting at least one referral sorted for now to whichever is more pressing. It sounds like that will be the POTS so ask to be referred to a specialist who understands pots. You can use the list from pots UK to help find one. From there you, GP and cardiologist will hopefully be able to make progress with the EDS side of things. Or if your GP is able and willing you can try to get a referral to a rheumatologist who specialises in hypermobility too. This is often a long journey so pick your battles. It might take a while to get everything sorted and sometimes you'll need to focus on one thing and put another on hold for a bit to avoid a confusing mess.

If you really can't get things sorted with the NHS I would look into contacting pals or going for a couple of private appointments if possible. Sometimes just one or two private sessions can help give the NHS a kick up the bum and if you see the right specialist they can be good for telling you how to work with the system. There are a couple of cardiologists who can be good for that and should be willing to see you for just one appointment essentially so you can get a letter telling GP that you should be assessed for it. Some will also work on the NHS so you could be referred back to them,


Sorry for rambling a bit. I hope you can decipher what I mean. If you want some more specifics like who are good specialists in what area and some help going through the process of talking to PALS, going about the long journey etc I would join a facebook group. They can be very helpful for advice and also to vent to. I'll be happy to send you links to some if you PM me.


Good luck. I know how frustrating it can be trying to sort out chronic conditions. I hope you can get things moving soon.
Agreed. All very helpful information!

Would also like to add to the OP, be open to the idea that it might not be (h)EDS/POTS/etc. It could be something different. Loads of different disorders cause hypermobility as an example, it's important to not just get fixated on the (h)EDS label, or indeed any label. Your symptoms are just as valid without a label as mine are with labels. Focus on getting symptom relief. This is hard to do, I struggle with it myself, but the labels don't really mean a whole lot. But you're gonna have to go through a whole lot of testing etc. to rule things in/out before they settle on EDS, unless you have a genetic mutation.
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remarius
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(Original post by Kindred)
Oh boy you really aren't having a good time are you!

First off as a bit of general background since I don't know how much you know about POTS/ EDS and it can be hard to find anybody who knows much on the NHS. hEDS is a hypermobile form of EDS and has no genetic test. The other types do have genetic tests, but are pretty rare and unless you have any particular signs of them or pay yourself you are unlikely to be tested for them. I was told that most people with POTS have hypermobility type so unless you have any particular signs of the others I wouldn't worry about that.
You can find advice and info on EDS on the EDSUK website https://www.ehlers-danlos.org/
And the diagnostic criteria here https://www.ehlers-danlos.com/heds-d...tic-checklist/
If you don't fit the diagnostic criteria for hEDS, but still have a lot of signs of it you will likely be diagnosed with a form of hypermobility spectrum disorder. It's basically the same stuff, but a different name because the main feature of both things is hypermobility and we don't even know for sure that they aren't all the same thing (since there isn't a genetic marker or any other solid proof of hEDS vs other hypermobilty).

POTS is a form of dysautonomia where your body can't control your heart rate well. It seems you already have a reasonable idea that you have POTS, but you can find the criteria and info (including a print out for GPs) on the POTSUK website. https://www.potsuk.org/

People with hEDS will tend to have POTS and vica versa. there's no real reason found yet, but they do seem to be linked. People with either will also often have some level of gut and allergy issues. Hypermobility can affect your body in a lot more ways then people realise since it isn't just joints that can be hypermobile. Anything that involves connective tissue can be affected and that includes things like your gut. Since it's a bit of a different way for bodies to work it helps to see somebody who specialises in that.


Now for this whole mess you are in. I would start by booking a double appointment with your GP and laying it out for them. A double appointment will give you time to talk about stuff and make some progress without worrying about the time. Tell them about this whole screw up and ask for them to help you get on track. To get diagnosed you will want to see specialists who have knowledge of dysautonomia and hypermobilty. They are both a bit rare/ unique so even a cardiologist may not really get dysautonomia or a rheumatologist hEDS. The two websites I linked to have some lists and you can also google doctors to see what they specialise in. A doctor who specialises in either will likely also know of the other (since they are so linked) so if you see one they may well be able to help you sort out the other.
All of my stuff has been organised by my cardiologist because he has a special understanding of hypermobile people and knows specialists in other areas who also have a special understanding of it.
I would bring along any bits you have that support your request (anything the A&E doctor wrote, a home HR test that shows your HR increasing on standing, a print off from the websites etc). They may not want to see all of them, but if it does come up you will be ready.


So I would talk to your GP about getting at least one referral sorted for now to whichever is more pressing. It sounds like that will be the POTS so ask to be referred to a specialist who understands pots. You can use the list from pots UK to help find one. From there you, GP and cardiologist will hopefully be able to make progress with the EDS side of things. Or if your GP is able and willing you can try to get a referral to a rheumatologist who specialises in hypermobility too. This is often a long journey so pick your battles. It might take a while to get everything sorted and sometimes you'll need to focus on one thing and put another on hold for a bit to avoid a confusing mess.

If you really can't get things sorted with the NHS I would look into contacting pals or going for a couple of private appointments if possible. Sometimes just one or two private sessions can help give the NHS a kick up the bum and if you see the right specialist they can be good for telling you how to work with the system. There are a couple of cardiologists who can be good for that and should be willing to see you for just one appointment essentially so you can get a letter telling GP that you should be assessed for it. Some will also work on the NHS so you could be referred back to them,


Sorry for rambling a bit. I hope you can decipher what I mean. If you want some more specifics like who are good specialists in what area and some help going through the process of talking to PALS, going about the long journey etc I would join a facebook group. They can be very helpful for advice and also to vent to. I'll be happy to send you links to some if you PM me.


Good luck. I know how frustrating it can be trying to sort out chronic conditions. I hope you can get things moving soon.
I'm pretty aware with both hEDS and POTS, I can't afford the private investigations as there is no one in Northern Ireland, even privately, and I've already been told by specialists in Ireland I can't afford them without medical insurance. I can't afford medical insurance as even whilst I am working, I'm too tired to work the hours I need to even be able to afford food and my bills, and for some reason my pay is short and I don't even have a payslip to see why. I'm not working for a small company, either.

I fit the hEDS diagnostic criteria. My beighton score isn't the highest, as I'm a 5, but not all the ways I'm hypermobile are covered by it either. I have no history of dislocations but it turns out I've been subluxing without realising as it's not painful, and I can feel when I'm hyperflexing my bigger joints and it's not painful but feels tight, and like they're about to dislocate, so I just don't do it. In terms of allergies and gut issues, I have been told IBS by a doctor who couldn't be bothered to investigate and the amount of stuff I react too seems to just be getting bigger and bigger.

I've been told 100% POTS as I had a poor mans TT done that saw me go from around 90bpm to 160bpm upon standing, but to get it diagnosed on the NHS. I nearly dropped in work twice due to dizziness upon standing up too fast, which hasn't happened in a while. I get other things as well that I've been told are more related to a sleep disorder such as numbness in my hands where I struggle to grip onto things and can't remember doing/saying things as it feels like I dreamt them/slept through them, but Raynauds is there as well (GP said Raynauds was not related to anything else I had going on - Irish cardio nurse said it 100% was).

As we don't have a POTS specialist, I had to ask for cardiology. That referral was never made, the GP just said she wanted an ECG done but told me she would only refer after that was done as cardiology wouldn't accept a referral without one. My psych consultant has apparently made a referral, but I have no idea where too as there has been no referral to the hospital by either the doctor I was sent to see within the hospital for investigations that meant one holter monitor and nothing else, by my GP or by my psych consultant. At least it should be in my notes that I asked for the referrals.
(Original post by Pathway)
Agreed. All very helpful information!

Would also like to add to the OP, be open to the idea that it might not be (h)EDS/POTS/etc. It could be something different. Loads of different disorders cause hypermobility as an example, it's important to not just get fixated on the (h)EDS label, or indeed any label. Your symptoms are just as valid without a label as mine are with labels. Focus on getting symptom relief. This is hard to do, I struggle with it myself, but the labels don't really mean a whole lot. But you're gonna have to go through a whole lot of testing etc. to rule things in/out before they settle on EDS, unless you have a genetic mutation.
As much as I'd love to believe that, I sort of do need a label in terms of being able to access support through college and so I can get the medical care I need. Especially for something like a sleep disorder/narcolepsy, and with other issues I'm having. I know it IS POTS as I've had a medical professional familiar with the condition tell me thats what it is but that he's unable to diagnose me and to get it done on the NHS. I've been told by one NHS doctor that I need to get POTS diagnosed but that there's only one tilt table in NI and they won't diagnose until you're really struggling.

I don't want to get to the point I'm not able to do the things I enjoy, like sports. I already know I'll probably have to stop playing rugby, that weightlifting might be something I have to stop and that if my hips keep getting worse, I'm going to have to sell my horse. I'm starting to struggle with mounting as it is, and some days walking is painful. But I am not bad enough, so I am being ignored and currently treated as a time waster and a hypochondriac with anxiety. It doesn't seem to matter what I tell doctors, they seem to think I'm imagining it or they have no idea whats going on and can't be bothered to investigate so call it anxiety and tell me to take a beta blocker - after I've told them I've previously had a bad reaction to a beta blocker and being given a vague answer to whether they're safe to be taken with concerta XL.

My life is being impacted on as it is, I can't sleep and sit in certain positions, can't do certain things, can't do things I enjoyed doing 6 months ago nearly pain free, but because I'm not passing out, not screaming in pain and not needing emergency care and things like feeding tubes and PICC lines they seem to think I'm not worth their time, or they can't tell me why, so they won't bother and instead I'm just anxious about something, even if I don't realise I'm anxious and have nothing to be anxious about. I don't know what else I can do at this stage, as the referrals I'm asking for and the referrals I'm being told I need and will be made aren't being made at this point. In terms of psych at least, it feels like it's all one big cover up and they're delaying it in the hope they can palm me off to another doctor and not be responsible.
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I'm pretty aware with both hEDS and POTS, I can't afford the private investigations as there is no one in Northern Ireland, even privately, and I've already been told by specialists in Ireland I can't afford them without medical insurance. I can't afford medical insurance as even whilst I am working, I'm too tired to work the hours I need to even be able to afford food and my bills, and for some reason my pay is short and I don't even have a payslip to see why. I'm not working for a small company, either.

I fit the hEDS diagnostic criteria. My beighton score isn't the highest, as I'm a 5, but not all the ways I'm hypermobile are covered by it either. I have no history of dislocations but it turns out I've been subluxing without realising as it's not painful, and I can feel when I'm hyperflexing my bigger joints and it's not painful but feels tight, and like they're about to dislocate, so I just don't do it. In terms of allergies and gut issues, I have been told IBS by a doctor who couldn't be bothered to investigate and the amount of stuff I react too seems to just be getting bigger and bigger.

I've been told 100% POTS as I had a poor mans TT done that saw me go from around 90bpm to 160bpm upon standing, but to get it diagnosed on the NHS. I nearly dropped in work twice due to dizziness upon standing up too fast, which hasn't happened in a while. I get other things as well that I've been told are more related to a sleep disorder such as numbness in my hands where I struggle to grip onto things and can't remember doing/saying things as it feels like I dreamt them/slept through them, but Raynauds is there as well (GP said Raynauds was not related to anything else I had going on - Irish cardio nurse said it 100% was).

As we don't have a POTS specialist, I had to ask for cardiology. That referral was never made, the GP just said she wanted an ECG done but told me she would only refer after that was done as cardiology wouldn't accept a referral without one. My psych consultant has apparently made a referral, but I have no idea where too as there has been no referral to the hospital by either the doctor I was sent to see within the hospital for investigations that meant one holter monitor and nothing else, by my GP or by my psych consultant. At least it should be in my notes that I asked for the referrals.

As much as I'd love to believe that, I sort of do need a label in terms of being able to access support through college and so I can get the medical care I need. Especially for something like a sleep disorder/narcolepsy, and with other issues I'm having. I know it IS POTS as I've had a medical professional familiar with the condition tell me thats what it is but that he's unable to diagnose me and to get it done on the NHS. I've been told by one NHS doctor that I need to get POTS diagnosed but that there's only one tilt table in NI and they won't diagnose until you're really struggling.

I don't want to get to the point I'm not able to do the things I enjoy, like sports. I already know I'll probably have to stop playing rugby, that weightlifting might be something I have to stop and that if my hips keep getting worse, I'm going to have to sell my horse. I'm starting to struggle with mounting as it is, and some days walking is painful. But I am not bad enough, so I am being ignored and currently treated as a time waster and a hypochondriac with anxiety. It doesn't seem to matter what I tell doctors, they seem to think I'm imagining it or they have no idea whats going on and can't be bothered to investigate so call it anxiety and tell me to take a beta blocker - after I've told them I've previously had a bad reaction to a beta blocker and being given a vague answer to whether they're safe to be taken with concerta XL.

My life is being impacted on as it is, I can't sleep and sit in certain positions, can't do certain things, can't do things I enjoyed doing 6 months ago nearly pain free, but because I'm not passing out, not screaming in pain and not needing emergency care and things like feeding tubes and PICC lines they seem to think I'm not worth their time, or they can't tell me why, so they won't bother and instead I'm just anxious about something, even if I don't realise I'm anxious and have nothing to be anxious about. I don't know what else I can do at this stage, as the referrals I'm asking for and the referrals I'm being told I need and will be made aren't being made at this point. In terms of psych at least, it feels like it's all one big cover up and they're delaying it in the hope they can palm me off to another doctor and not be responsible.
Okay, let's break this down. These doctors that are suspecting you have POTS, have you got any written confirmation that this has been suggested? If not it might be worth seeing if you can get your medical records to get some print out of it. Do they have a definition of "really struggling"? What are your current symptoms? How do they impact you? It might be worth keeping a symptom diary, what exacerbates it, what helps you, general other things like what medications you took, sleep, stress, etc. Write all of this down. I've found it easier to get across to doctors how frustrated I am by various issues I have by showing them a daily log of various things.

For what it's worth, I don't think you're a time waster, a hyperchondriac, or anything like that. I don't think you're imagining it. You very clearly are affected by it. Your college should be helping you with or without a diagnosis. When my diagnosis wasn't concrete and I was struggling in school, I was still getting help. What is your GP like?? If they're not supportive then you need to think about changing. You need to make proactive steps in the right direction, it might be worth asking if you can be referred to a cardiologist/electrophysiologist in England, there are a lot more specialists here. Would you be willing to take time off to come over here for testing?

Regarding your allergies, are you on antihistamines? H1/H2 blockers? That might help. You might even see a reduction in POTS symptoms and pain, which sounds counterintuitive, but if you have hEDS and POTS you have a high chance of a Mast Cell Disorder as well.

You don't need to be the worst of the worst, the people on YouTube are not representative of EDS and co. What sort of things are you doing to help yourself? What's your fluid intake like? what about your salt? Are you aware of what you're doing with your joints? Pillows are your best friend for sleeping, I mean I have a huge 8ft one to prevent me from rolling around in the night, my SI joint doesn't really care and neither do my shoulders as they still dislocate or subluxate, but there are ways to self-manage, you need to adapt. I'd ask when you go to your GP next if you can be referred to physiotherapy, they can help you with your joints and getting them stronger. You really need to speak to PALS. I'd be willing to help if you want, I have been where you are. Things can get better.

I'm sorry if I have offended you or upset you.
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Okay, let's break this down. These doctors that are suspecting you have POTS, have you got any written confirmation that this has been suggested? If not it might be worth seeing if you can get your medical records to get some print out of it. Do they have a definition of "really struggling"? What are your current symptoms? How do they impact you? It might be worth keeping a symptom diary, what exacerbates it, what helps you, general other things like what medications you took, sleep, stress, etc. Write all of this down. I've found it easier to get across to doctors how frustrated I am by various issues I have by showing them a daily log of various things.

For what it's worth, I don't think you're a time waster, a hyperchondriac, or anything like that. I don't think you're imagining it. You very clearly are affected by it. Your college should be helping you with or without a diagnosis. When my diagnosis wasn't concrete and I was struggling in school, I was still getting help. What is your GP like?? If they're not supportive then you need to think about changing. You need to make proactive steps in the right direction, it might be worth asking if you can be referred to a cardiologist/electrophysiologist in England, there are a lot more specialists here. Would you be willing to take time off to come over here for testing?

Regarding your allergies, are you on antihistamines? H1/H2 blockers? That might help. You might even see a reduction in POTS symptoms and pain, which sounds counterintuitive, but if you have hEDS and POTS you have a high chance of a Mast Cell Disorder as well.

You don't need to be the worst of the worst, the people on YouTube are not representative of EDS and co. What sort of things are you doing to help yourself? What's your fluid intake like? what about your salt? Are you aware of what you're doing with your joints? Pillows are your best friend for sleeping, I mean I have a huge 8ft one to prevent me from rolling around in the night, my SI joint doesn't really care and neither do my shoulders as they still dislocate or subluxate, but there are ways to self-manage, you need to adapt. I'd ask when you go to your GP next if you can be referred to physiotherapy, they can help you with your joints and getting them stronger. You really need to speak to PALS. I'd be willing to help if you want, I have been where you are. Things can get better.

I'm sorry if I have offended you or upset you.
Okay, so trying to break things down a little. You haven't upset or offended me, I just have been told yet again that a referral has been made despite there being no record of there being one. It's frustrating, because I at least need something to help me manage with ADD because I absolutely can't cope living on my own in Dublin as a functioning adult, but I'm not getting anything to help because I have to be seen by cardiology. Which there is no referral for despite having two doctors tell me there is.

Allergies wise - I take an antihistamine daily usually. I have hayfever, and it's basically similarly to hayfever that I get bothered by them. Animal hair I'm allergic too, I can come out in red bumps if I'm handling hay with my arms exposed and some of the cleaners and scents one of my room mates likes to use can set me off as well. And then sometimes it's just at random.

My POTS and cardiology notes are in the Irish system and I have to get them released, as there has been nothing done by the NHS so far. I do have my GP notes waiting to be picked up. Apparently the NHS can't have access to my Irish notes, which seems odd as A&E in the Irish hospital were able to contact the NHS and get some of my records/test results from them.

I have a fitbit which has actually been really, really good. I don't always track my water and food, but it tracks my sleep and gives a rough idea as to my heart rate as well as my level of activity. My college has been great, but they give more specialised supports to conditions such as narcolepsy, POTS etc. and as I don't have a diagnosis or even proof of investigations, they can't offer this as they have no way to know if I'm lying or not. I already do get supports for ADD, but they don't necessarily cover all the other areas for support.

I don't *have* a GP, as I just have to take whatever appointment is given to me. The one I've been having to see lately is absolutely useless, but I also can't wait 4/5 weeks for an appointment. As far as I know, they also don't usually refer to England and I think we have to pay for it, and with the cost of flights and travelling it's not possible. I also know the travelling would exhaust me as I'm currently finding Dublin to Belfast wipes me out. I can't afford to take time off work, because I have to pay for my horse and it already looks like I'm being taxed at 40% emergency or my wages are short (and I have no payslip to even check this as they haven't set me up properly yet) and I have to work at least 16 hours just to be able to afford her because of this and until I can get it fixed and corrected.

My fluid intake is nowhere near what it should be, but my salt intake is probably about where it should be. I do try but when I walk 40 minutes to work, 40 minutes back and have a 4 hour shift and forgot to lift my water bottle I don't help myself out. In terms of sleeping, I have a weighted blanket that I sleep better under, and half my bed is pillows as I do fall asleep sitting upright sometimes without realising. I don't sleep soundly or through the night usually, unless I completely crash out.

I used to be pretty active, I was at my best last summer when I was working, riding and looking after my loan horse, and then in the gym and weightlifting. I know now that weights are actually pretty helpful in terms of building muscle for joint stability. I'm now nowhere near as active, and my hip has got so bad that I can't squat at all and I'm limited in my deadlift and cardio. It feels like something needs to be pushed back in, but nothing seems to have worked to push it back in so far. I've lost a lot of my muscle and now just have fat, and much much bendier joints. I also can't do anything with my shoulders as my left shoulder I've damaged playing rugby and falling off a horse and I might have torn something. I don't dislocate but can sublux although I can feel it and it feels like I'm about to push the joint too far, it's not painful but just feels like when you reach your limit of muscle stretching except not in the muscle, if that makes sense. My ankles and fingers and thumbs are the only joints I don't get that feeling in.

We don't have PALS in NI.
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(Original post by remarius)
Okay, so trying to break things down a little. You haven't upset or offended me, I just have been told yet again that a referral has been made despite there being no record of there being one. It's frustrating, because I at least need something to help me manage with ADD because I absolutely can't cope living on my own in Dublin as a functioning adult, but I'm not getting anything to help because I have to be seen by cardiology. Which there is no referral for despite having two doctors tell me there is.

Allergies wise - I take an antihistamine daily usually. I have hayfever, and it's basically similarly to hayfever that I get bothered by them. Animal hair I'm allergic too, I can come out in red bumps if I'm handling hay with my arms exposed and some of the cleaners and scents one of my room mates likes to use can set me off as well. And then sometimes it's just at random.

My POTS and cardiology notes are in the Irish system and I have to get them released, as there has been nothing done by the NHS so far. I do have my GP notes waiting to be picked up. Apparently the NHS can't have access to my Irish notes, which seems odd as A&E in the Irish hospital were able to contact the NHS and get some of my records/test results from them.

I have a fitbit which has actually been really, really good. I don't always track my water and food, but it tracks my sleep and gives a rough idea as to my heart rate as well as my level of activity. My college has been great, but they give more specialised supports to conditions such as narcolepsy, POTS etc. and as I don't have a diagnosis or even proof of investigations, they can't offer this as they have no way to know if I'm lying or not. I already do get supports for ADD, but they don't necessarily cover all the other areas for support.

I don't *have* a GP, as I just have to take whatever appointment is given to me. The one I've been having to see lately is absolutely useless, but I also can't wait 4/5 weeks for an appointment. As far as I know, they also don't usually refer to England and I think we have to pay for it, and with the cost of flights and travelling it's not possible. I also know the travelling would exhaust me as I'm currently finding Dublin to Belfast wipes me out. I can't afford to take time off work, because I have to pay for my horse and it already looks like I'm being taxed at 40% emergency or my wages are short (and I have no payslip to even check this as they haven't set me up properly yet) and I have to work at least 16 hours just to be able to afford her because of this and until I can get it fixed and corrected.

My fluid intake is nowhere near what it should be, but my salt intake is probably about where it should be. I do try but when I walk 40 minutes to work, 40 minutes back and have a 4 hour shift and forgot to lift my water bottle I don't help myself out. In terms of sleeping, I have a weighted blanket that I sleep better under, and half my bed is pillows as I do fall asleep sitting upright sometimes without realising. I don't sleep soundly or through the night usually, unless I completely crash out.

I used to be pretty active, I was at my best last summer when I was working, riding and looking after my loan horse, and then in the gym and weightlifting. I know now that weights are actually pretty helpful in terms of building muscle for joint stability. I'm now nowhere near as active, and my hip has got so bad that I can't squat at all and I'm limited in my deadlift and cardio. It feels like something needs to be pushed back in, but nothing seems to have worked to push it back in so far. I've lost a lot of my muscle and now just have fat, and much much bendier joints. I also can't do anything with my shoulders as my left shoulder I've damaged playing rugby and falling off a horse and I might have torn something. I don't dislocate but can sublux although I can feel it and it feels like I'm about to push the joint too far, it's not painful but just feels like when you reach your limit of muscle stretching except not in the muscle, if that makes sense. My ankles and fingers and thumbs are the only joints I don't get that feeling in.

We don't have PALS in NI.
Facebook groups or more specialised forums will probably be more helpful with your situation because they are more likely to have people from a similar area who have been through the same sort of mess (it's unfortunately all too common to have to fight through stuff like this to eventually get diagnosed).

If the GP you usually end up seeing is pants I would try booking with a better one even if it's a longer wait. Keep on trying to sort things other ways while you wait, but if you book now it means you won't have to wait even longer if seeing GP becomes your only option. I always book with the same GP now even though I have to wait weeks for an appointment cos at least I know I'm not waiting for nothing like with some of the others (I pretty much have a list of the GPs I have grudges against and the ones I'm willing to see).

I'm not terribly aware of how things work with your being in NI, but I do know there are some specialists who will do phone consultations. I don't know how referral for that would work or how they would arrange tests after.

It really sucks dealing with stuff like this cos at times you need to decide between prioritising not messing with your current life or potentially improving your future life. And that's a really hard and complicated choice to make.
It gets really messy and confusing dealing with this so it might help to make written notes of all of it. What options you have, what ones you've tried, what things you need to arrange and in what order etc. Should hopefully mean a tiny bit less thinking and stress with each step.


Sorry I can't help more. x
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(Original post by remarius)
Okay, so trying to break things down a little. You haven't upset or offended me, I just have been told yet again that a referral has been made despite there being no record of there being one. It's frustrating, because I at least need something to help me manage with ADD because I absolutely can't cope living on my own in Dublin as a functioning adult, but I'm not getting anything to help because I have to be seen by cardiology. Which there is no referral for despite having two doctors tell me there is.

Allergies wise - I take an antihistamine daily usually. I have hayfever, and it's basically similarly to hayfever that I get bothered by them. Animal hair I'm allergic too, I can come out in red bumps if I'm handling hay with my arms exposed and some of the cleaners and scents one of my room mates likes to use can set me off as well. And then sometimes it's just at random.

My POTS and cardiology notes are in the Irish system and I have to get them released, as there has been nothing done by the NHS so far. I do have my GP notes waiting to be picked up. Apparently the NHS can't have access to my Irish notes, which seems odd as A&E in the Irish hospital were able to contact the NHS and get some of my records/test results from them.

I have a fitbit which has actually been really, really good. I don't always track my water and food, but it tracks my sleep and gives a rough idea as to my heart rate as well as my level of activity. My college has been great, but they give more specialised supports to conditions such as narcolepsy, POTS etc. and as I don't have a diagnosis or even proof of investigations, they can't offer this as they have no way to know if I'm lying or not. I already do get supports for ADD, but they don't necessarily cover all the other areas for support.

I don't *have* a GP, as I just have to take whatever appointment is given to me. The one I've been having to see lately is absolutely useless, but I also can't wait 4/5 weeks for an appointment. As far as I know, they also don't usually refer to England and I think we have to pay for it, and with the cost of flights and travelling it's not possible. I also know the travelling would exhaust me as I'm currently finding Dublin to Belfast wipes me out. I can't afford to take time off work, because I have to pay for my horse and it already looks like I'm being taxed at 40% emergency or my wages are short (and I have no payslip to even check this as they haven't set me up properly yet) and I have to work at least 16 hours just to be able to afford her because of this and until I can get it fixed and corrected.

My fluid intake is nowhere near what it should be, but my salt intake is probably about where it should be. I do try but when I walk 40 minutes to work, 40 minutes back and have a 4 hour shift and forgot to lift my water bottle I don't help myself out. In terms of sleeping, I have a weighted blanket that I sleep better under, and half my bed is pillows as I do fall asleep sitting upright sometimes without realising. I don't sleep soundly or through the night usually, unless I completely crash out.

I used to be pretty active, I was at my best last summer when I was working, riding and looking after my loan horse, and then in the gym and weightlifting. I know now that weights are actually pretty helpful in terms of building muscle for joint stability. I'm now nowhere near as active, and my hip has got so bad that I can't squat at all and I'm limited in my deadlift and cardio. It feels like something needs to be pushed back in, but nothing seems to have worked to push it back in so far. I've lost a lot of my muscle and now just have fat, and much much bendier joints. I also can't do anything with my shoulders as my left shoulder I've damaged playing rugby and falling off a horse and I might have torn something. I don't dislocate but can sublux although I can feel it and it feels like I'm about to push the joint too far, it's not painful but just feels like when you reach your limit of muscle stretching except not in the muscle, if that makes sense. My ankles and fingers and thumbs are the only joints I don't get that feeling in.

We don't have PALS in NI.
I'd put in a complaint if they keep messing up consistently.

Are you able to directly give your Irish notes to the NHS doctors? This is very confusing to me. I'm not following very well if I'm honest.

Fitbits aren't really that accurate for HR data, especially in things like POTS, it simply can't keep up with how quick the changes happen. I'd take the Fitbit HR data with a large pinch of salt.

How come you have no proof of investigations? Do you not get letters forwarded to your house? What specialist support can your college give you with a diagnosis that a letter stating symptoms can't give you?

I think you should seriously consider saving up money to go to England and go private, at least for the testing aspect of POTS. It sucks, but sometimes sacrifices have to be made if you want a better long term future. Can your parents assist you at all? Could you sell items to help?

Definitely work on being consistent with your fluid intake. They say for a person who has POTS that you should drink more fluid than the average person because it helps with blood pressure and stuff like that, but you need to balance it with salt. Stuff like Nuun tablets help with salts and stuff. Set alarms on your Fitbit hourly to remind you to drink water, set goals e.g. after 2 hours x amount of water needs to be drink, etc.

That's true, they are helpful. But physiotherapy is helpful as well especially in terms of knowing where to stop, for example don't lock your knees, don't lock your elbows, etc. How to incorporate weight training into your daily life without damaging your joints is important as well. For context I literally can't hold anything without pulling my shoulders out, I have to consciously tense my muscles to keep them in, or they "fall out" from the mere weight of my arms. Holding a bottle of water or some other light item? Dislocations galore, elbows, wrists, fingers join in as well. Physiotherapy is helping me though, and it can help you too. Ask to be referred. Get your Beighton score confirmed by a physiotherapist (did you self-score as 5/9?). Physiotherapy will help your pain, your fatigue and other symptoms will improve as well. It'll help you figure out a way to protect your joints and do things you love. It will help you get your life back.


I'm just asking questions btw to better understand things, I hope it doesn't come across as rude. I don't want to add to your distress.
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remarius
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(Original post by Pathway)
I'd put in a complaint if they keep messing up consistently.

Are you able to directly give your Irish notes to the NHS doctors? This is very confusing to me. I'm not following very well if I'm honest.

Fitbits aren't really that accurate for HR data, especially in things like POTS, it simply can't keep up with how quick the changes happen. I'd take the Fitbit HR data with a large pinch of salt.

How come you have no proof of investigations? Do you not get letters forwarded to your house? What specialist support can your college give you with a diagnosis that a letter stating symptoms can't give you?

I think you should seriously consider saving up money to go to England and go private, at least for the testing aspect of POTS. It sucks, but sometimes sacrifices have to be made if you want a better long term future. Can your parents assist you at all? Could you sell items to help?

Definitely work on being consistent with your fluid intake. They say for a person who has POTS that you should drink more fluid than the average person because it helps with blood pressure and stuff like that, but you need to balance it with salt. Stuff like Nuun tablets help with salts and stuff. Set alarms on your Fitbit hourly to remind you to drink water, set goals e.g. after 2 hours x amount of water needs to be drink, etc.

That's true, they are helpful. But physiotherapy is helpful as well especially in terms of knowing where to stop, for example don't lock your knees, don't lock your elbows, etc. How to incorporate weight training into your daily life without damaging your joints is important as well. For context I literally can't hold anything without pulling my shoulders out, I have to consciously tense my muscles to keep them in, or they "fall out" from the mere weight of my arms. Holding a bottle of water or some other light item? Dislocations galore, elbows, wrists, fingers join in as well. Physiotherapy is helping me though, and it can help you too. Ask to be referred. Get your Beighton score confirmed by a physiotherapist (did you self-score as 5/9?). Physiotherapy will help your pain, your fatigue and other symptoms will improve as well. It'll help you figure out a way to protect your joints and do things you love. It will help you get your life back.


I'm just asking questions btw to better understand things, I hope it doesn't come across as rude. I don't want to add to your distress.
I'm about to go and pick up my GP notes, psych notes they're less willing to release which imo is telling. I think my psych consultant has already had one complaint put against him too that came from my mum in regards to my care.

I have to request that my notes are released to me by the Irish hospital to give to my doctors on the NHS, as I've been told that the Irish doctors won't tell the NHS about my notes. It seems odd as I know the Irish doctors were able to get information about me from the NHS in terms of bloods results and stuff like that. My psych consultant also doesn't seem to either believe or think that all my normal ECGs and my normal holter monitor show that there is no actual heart problem, either. I don't know what tests my psych consultant wants done, he's just said he wants cardiology to say I'm fine. NHS Cardiology is either refusing to see me, or referrals aren't going through to them for some reason.

I have no proof of investigations as none have happened! All the proof I have is that I have had to get a doctors note confirming I am having to get tests done and taken off my ADD medication. I know for narcolepsy there's a room students can use to sleep, which I have no access too. I don't have any proof I'm being investigated for POTS, EDS/hypermobility or a sleep disorder, because the referrals aren't being made. A letter of symptoms is fine in terms of extenuating circumstances, but for additional support I'm fairly sure they need more than just a list of symptoms.

I'm not working enough to be saving any money to begin with, Dublin is more expensive than London to live in. I'm not making any money or even breaking even despite the fact I am working. My parents are divorced, and I have to fight my father (who can afford to pay) in regards to covering my rent, and he has already said he'll have to consider if he'd fund private investigations and has yet to reply to me regarding if he will or not. My mum can't afford to help me any more than she is already. I'm seriously considering taking out private healthcare in Ireland as there's a hi tech hospital with a tilt table close enough to me, I just don't know if I'll be classed as pre-existing or not.

GP didn't ask about a beighton score, just said she had no idea who to refer too and she'd find out and call me and didn't even make a note of it as something to follow up on. I self scored 5/9 but it may well be higher as I'm not sure on the degree my knees bend too as I have a feeling they bend but not to the extent they'd be counted. My fingers and thumbs are definitely the worst for me, even typing makes me overextend my finger tips and basically my hands fit in pringles cans as I can squish them up properly. I have the Steinberg sign as well but I'm not sure if that's due to being able to dislocate my thumbs or not. I've previously had physio on one of my knees that helped, and until I know whats up with my shoulder I can't do much in the gym anyway unfortunately.
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Pathway
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(Original post by remarius)
I'm about to go and pick up my GP notes, psych notes they're less willing to release which imo is telling. I think my psych consultant has already had one complaint put against him too that came from my mum in regards to my care.

I have to request that my notes are released to me by the Irish hospital to give to my doctors on the NHS, as I've been told that the Irish doctors won't tell the NHS about my notes. It seems odd as I know the Irish doctors were able to get information about me from the NHS in terms of bloods results and stuff like that. My psych consultant also doesn't seem to either believe or think that all my normal ECGs and my normal holter monitor show that there is no actual heart problem, either. I don't know what tests my psych consultant wants done, he's just said he wants cardiology to say I'm fine. NHS Cardiology is either refusing to see me, or referrals aren't going through to them for some reason.

I have no proof of investigations as none have happened! All the proof I have is that I have had to get a doctors note confirming I am having to get tests done and taken off my ADD medication. I know for narcolepsy there's a room students can use to sleep, which I have no access too. I don't have any proof I'm being investigated for POTS, EDS/hypermobility or a sleep disorder, because the referrals aren't being made. A letter of symptoms is fine in terms of extenuating circumstances, but for additional support I'm fairly sure they need more than just a list of symptoms.

I'm not working enough to be saving any money to begin with, Dublin is more expensive than London to live in. I'm not making any money or even breaking even despite the fact I am working. My parents are divorced, and I have to fight my father (who can afford to pay) in regards to covering my rent, and he has already said he'll have to consider if he'd fund private investigations and has yet to reply to me regarding if he will or not. My mum can't afford to help me any more than she is already. I'm seriously considering taking out private healthcare in Ireland as there's a hi tech hospital with a tilt table close enough to me, I just don't know if I'll be classed as pre-existing or not.

GP didn't ask about a beighton score, just said she had no idea who to refer too and she'd find out and call me and didn't even make a note of it as something to follow up on. I self scored 5/9 but it may well be higher as I'm not sure on the degree my knees bend too as I have a feeling they bend but not to the extent they'd be counted. My fingers and thumbs are definitely the worst for me, even typing makes me overextend my finger tips and basically my hands fit in pringles cans as I can squish them up properly. I have the Steinberg sign as well but I'm not sure if that's due to being able to dislocate my thumbs or not. I've previously had physio on one of my knees that helped, and until I know whats up with my shoulder I can't do much in the gym anyway unfortunately.
You can make a Subject Access Request to whoever has your psych. notes. They have to give you your stuff by law as you are the subject of the request and you're entitled to the notes, the only way they wouldn't is if there's "harmful" information in it.

You really do need to ask someone who works in the health service where you are about what the equivalent of PALS is, you need someone who is way more knowledgeable than we are. It's massively complicated by the sounds of it.

I'd ask your college if they can support you more. Regardless of where you're at in the diagnostic process, it won't be quick, even if your referrals were live now, there are so many things to rule in/out clinically (and sometimes genetically), e.g. rare EDS types (e.g. kEDS, vEDS, cvEDS, clEDS, even cEDS, etc.) - if they feel you do have EDS but you can't get genetic testing for whatever reason they usually just leave you as an untyped case if they query it (that's what I've found anyway in my personal experience), Loeys-Dietz, Osteogensis Imperfecta, EDS/OI cross, Marfans, etc. if you have traits that align more with a disorder that has a specific testable criteria, rather than just clinical (like hEDS), they will refer you, but not just because. The NHS literally cannot pay for how much genetic testing would cost if everyone who was symptomatic and hypermobile got tested, tbh even in America not everyone gets genetic testing done for one reason or another. If you don't have red flags, they will not do it. Then there's other things they have to rule in/out, i.e. ME/CFS, Fibromyalgia, disorders relating to hypotonia, vitamin deficiencies even, etc. All of this sort of stuff is listed as exclusion criteria on the 2017 (h)EDS update.

If you don't ask for support from your college you won't get. Asking will not hurt you, so you might as well. Not asking only shoots you in the foot, no one else.

I'd try and be more persistent (idk if that's the right word) with your dad, this is important. How do you afford to look after your horse? Are they not incredibly expensive? This is the sort of thing that you need to think about, your health or your horse, that's something you need to really weigh up. Can you wait for a wait list that could be incredibly long, or do you want to do things now, improve your quality of life now?

I think you should leave it up to medical professionals who specialise in H/CTDs to judge your signs to see if they're clinically relevant or not, I get that you're concerned but worrying about it will not help you. There are things you can do right now to improve your quality of life with the limited information you have. Be kind to yourself, eat enough, drink enough, make sure you have enough salt, don't stand up too quick, be gentle on your joints, know your limits, etc. All of these things should help you feel better whilst you fight to be heard, but try not to take things into your own hands, they won't take you seriously if you come from a place of worry.
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annaleighhx
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Hey remarius.Just stumbled upon this thread searching for physios in Belfast who specialise in hypermobility. Did you get any progress made?For what it’s worth - RVH have a decent cardiology dept and assessed me for POTS (although tilt was done in the mater). Aside from ECG
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