EDS help with tiredness Watch

Anonymous #1
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Report Thread starter 3 weeks ago
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so i have eds and im wondering who else on here has it or has similar experience and can give me some advice on how to manage things like tiredness as im not seeing a consultant for a while and my gp seems to get annoyed and "not much they can do" so im hoping someone else on here can give me some tips to not be so tired (background info; I am not deficient in any vitamins and all blood tests are clear so im assuming me being tired literally all the time is an eds thing) so yeah i have gcses this year and im already struggling to keep up with the work let alone have enough time to revise because im so tired.
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Pathway
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Report 3 weeks ago
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Hi, I have EDS. I haven't really figured out how to manage the associated fatigue, but I am seeing a sleep specialist soon. Have you been referred to one?
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Anonymous #1
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(Original post by Pathway)
Hi, I have EDS. I haven't really figured out how to manage the associated fatigue, but I am seeing a sleep specialist soon. Have you been referred to one?
yeah im referred to a consultant but im a bit annoyed i havent been referred to a rheumatologist, only referred to a general pediatric consultant (im 16 in january so still under pediatrics) so yeah im a bit annoyed about that as my gp is a bit of a prick and dose not take much notice of the issues i have despite a diagnosis..
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Pathway
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(Original post by Anonymous)
yeah im referred to a consultant but im a bit annoyed i havent been referred to a rheumatologist, only referred to a general pediatric consultant (im 16 in january so still under pediatrics) so yeah im a bit annoyed about that as my gp is a bit of a prick and dose not take much notice of the issues i have despite a diagnosis..
Hmm, that's sorta weird. I'm not sure. There are loads of potential reasons why we have fatigue as EDS patients. I'm sure your sleep specialist will know what to rule out/look for (providing they know about EDS...). Are you in physiotherapy? Is pain being managed appropriately? Are you doing OK emotionally? How's your sleep hygiene? Are you getting adequate nutrition?

It's hard to get appropriate care, but there are people out there that do care and are very knowledgeable. I've found that there are a lot of specialists in London that know a lot about EDS in relation to their speciality. What sorta issues are they ignoring? Are your parents supportive? Maybe changing GPs is the best course of action for you.
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Anonymous #1
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I have only just been referred, i was diagnosed at 12 by a locum gp at my old surgery but had to change surgeries as it was to far, after the diagnosis was not referred anywhere and it was left at that and by the time my issues started to get worse, i couldnt even remember if i had actually been diagnosed (i had to ask my mum if i had even been diagnosed as i was confused as t how i wasnt even given physio?) and i still hesitate to call myself "disabled" for the fact that i just dont look disabled which is probably why im struggling so much with stuff because people dont believe me and i am scared to talk to people about it. my mental health is very up and down with constant social anxiety for which camhs dropped me after the initial assessment because my school didnt explain to them i had already had everything the school could do which had no affect, so i asked my school to refer me again last year and they still havent done it. my nuitrition is probably close to awful as well because my gastro issues are so bad that if i do not loads of high fat high calorie foods i seem to lose weight which is not what i want because i always get called out for being skinny anyway even though i literally eat constantly to maintain my somewhat normal weight.. yeah my mums pretty supportive because i got the eds from her side of the family where some of my relatives on that side are really badly affected (one of them is wheelchair confined at 13) but my dads side of the family dont really take it as seriously as on the outside i look like a perfectly healthy 15 year old apart from the injuries every week lol sorry for the long reply lol
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Pathway
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(Original post by Anonymous)
I have only just been referred, i was diagnosed at 12 by a locum gp at my old surgery but had to change surgeries as it was to far, after the diagnosis was not referred anywhere and it was left at that and by the time my issues started to get worse, i couldnt even remember if i had actually been diagnosed (i had to ask my mum if i had even been diagnosed as i was confused as t how i wasnt even given physio?) and i still hesitate to call myself "disabled" for the fact that i just dont look disabled which is probably why im struggling so much with stuff because people dont believe me and i am scared to talk to people about it. my mental health is very up and down with constant social anxiety for which camhs dropped me after the initial assessment because my school didnt explain to them i had already had everything the school could do which had no affect, so i asked my school to refer me again last year and they still havent done it. my nuitrition is probably close to awful as well because my gastro issues are so bad that if i do not loads of high fat high calorie foods i seem to lose weight which is not what i want because i always get called out for being skinny anyway even though i literally eat constantly to maintain my somewhat normal weight.. yeah my mums pretty supportive because i got the eds from her side of the family where some of my relatives on that side are really badly affected (one of them is wheelchair confined at 13) but my dads side of the family dont really take it as seriously as on the outside i look like a perfectly healthy 15 year old apart from the injuries every week lol sorry for the long reply lol
Talk to your mum about seeing someone else within your GP practice. The first thing I'd say is ask for a referral to physiotherapy.

I mean, I understand that, but if you can't do something because of EDS or associated issues, then you are disabled, whether or not you "look" it. Invisible disabilities exist! It might take time to accept that though. Talk with people you trust about it.

Be persistent with getting help with your mental health, because whilst that's not the sole cause of your fatigue (which is probably multi-factorial) it is impacting it in some way.

Speak with your GP or paediatrician about your GI issues too.

I'm sorry your dad's side don't take it seriously, but I'm glad your mum is supportive. Sorry to hear about your relative.

But yeah, definitely get into physiotherapy so that you can rehab your injuries and prevent them from occurring so frequently.

Don't worry about the long reply.
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Kindred
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So far the best results I've had are from pacing myself and keeping my pots under control. Through trial and error I have an idea of how much I can do before it starts to ware me out and then how worn out I can get before it will affect me the next day. I do what I can to reduce the effort involved in doing things so that I can keep doing them longer (like getting the bus or a lift instead of walking places so I can then spend longer walking around the place).
Pots is the main thing that wares me out quickly and badly so that's my main focus. Managing that includes medication, hydration, salt and sitting when I can.

Good luck with your referrals (and hopefully finding a more understanding GP at your surgery.
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Anonymous #1
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Ok so saw doctor at hospital friday, and she has referred me to physiotherapy (but there is a 1 year + waiting list) I have also been told I need to have inflammatory blood tests to rule that kinda stuff out and food intolerance testing (due to gastro issues), have also been told i potentially need allergy testing after that and am being referred to see a geneticist as they suspect marfans even though I meet criteria for hypermobile eds, is it even possible to have both???
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Pathway
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(Original post by Anonymous)
Ok so saw doctor at hospital friday, and she has referred me to physiotherapy (but there is a 1 year + waiting list) I have also been told I need to have inflammatory blood tests to rule that kinda stuff out and food intolerance testing (due to gastro issues), have also been told i potentially need allergy testing after that and am being referred to see a geneticist as they suspect marfans even though I meet criteria for hypermobile eds, is it even possible to have both???
Well, I'm not sure if it's possible to have both (part of the hEDS criteria states that you can't have another condition that causes similar symptoms, as it's still a diagnosis of exclusion, because they're trying to narrow down the gene pool, e.g. the HEDGE study), but a lot of the EDS population have traits similar to those with Marfans. Marfanoid habitus is very common, it's even in the crtieria for hEDS (e.g. thumb and wrist signs, wing span, etc.). For context I meet the clinical Ghent criteria for Marfans and I don't have it. Allergy (IgE ones) and mast cell issues are very common in EDS, immune issues in general are, so are GI complaints. It's good they're being so thorough with you though.
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