EDS Discussion & Support thread

[Innocenta]

Following some talk about a discussion thread for EDS, here we go!

EDS discussions very easily turn into 'diagnose me please' or woo about less than proven connections to other issues, so let's try to stay semi on topic if possible? But that said, obviously all welcome and people can probably pick up good tips from more or less severely affected EDSers.

@MedusasBadHairDay oh gosh, good luck with the rheum! I really hope it's not psoriatic arthritis too. HSD is more than enough to deal with

@EHopes Your poor little DD! That sounds so frustrating and painful for her, and you. I'm unable to have children due to my health but I imagine it must be very difficult to be in the parent's role. My parents have struggled with caring for me over the years. I'm sorry you're both going through this.

Thanks @Innocenta. Who should do the workup for POTS? Is it a rheumatologist too? I guess she could ask the guy who diagnosed her to refer her. What type of treatment is there available for POTS? I hadn't realised it was the POTS that caused the fainting. It would be great to get that under control. Last episode was when she was getting out of a bath so not the best circumstances to faint.

@OchonAgusOchonOh So, 'technically' POTS is a neurological condition, but it is most often looked after by cardiologists with a specialism in the area. She can certainly ask for referral via the NHS, these services do exist, but it would be easier and quicker to see a specialist privately if that would be accessible to her (even as a one off).

POTS actually has a really good charity! This is their site:

www.potsuk.org

POTS is much more treatable than EDS; there are many very effective medications.

Thank you @Innocenta. We're in Ireland and as we have health insurance, private isn't an issue. I guess it's just a question of finding a cardiologist who actually believes EDS exists. So many medics are dismissive of it.

@OchonAgusOchonOh Yes, general cardiologists are only really useful for ruling out major heart / vascular problems, not for POTS or similar issues. It needs to be a POTS specialist - she could potentially start with a remote appointment as some of the London cardiologists will 'see' patients from further afield.

POTS UK shows that there is a specialist in Dublin, Dr Jonathan Lyne, but I'm not sure about who else there is in the Republic of Ireland.

@MyOtherCarIsAPorsche i suspect Dd has hasimotos. In fact I asked her last week if she wanted a private blood test. She’s thinking about it.

@Innocenta yes- I think Dr Aziz is the way to go.

@Innocenta Thank you. Good idea re the zoom. I'll also suggest she asks the rheumatologist for a referral as he is very interested in the area.

Sounds like a plan! @OchonAgusOchonOh 🤗

Dd faints a lot with her POTS. Actually maybe a medic alert bracelet might be good for her. She’s in a massive amateur play at the moment (think 200 cast) and fainted just at the end of Act One last week. I had a panicked phone call from another cast member asking if I could come straight away or they’d be calling an ambulance. With Dd she’s quite altered consciousness even after she comes round from the initial faint, she’s confused, can seem a bit drunk. I’m quite blasé about it but forget how freaky it is for others. By the time I turned up ten mins later they’d nearly called an ambulance anyway as they were so worried.

Do you think she'd want to wear one? It does sound like she could benefit from having the info visible? @QuebecBagnet

No one should be fainting that much, poor girl. 😔

Thought I'd write about a few tips...I know these won't be applicable for everyone, but someone may find them helpful!

Having a tiny fridge in the bedroom (or just upstairs) is amazing as I can't get downstairs easily and need to drink loads. Also good for medications (and chocolate, haha).

We have a pre packed hospital bag so we can grab and go. Ladies who have had children will presumably have done this already for giving birth!

Little pouches of most used meds in: bedside table drawer; my partner's bag; my bag if we do go out. We also have an allergy and asthma case we take everywhere (only relevant if you need the stuff, obviously).

Topical voltarel gel is really helpful for me. Combining that with oral meds works better than just one or the other. We also use non prescription balms and stuff. Massage is not good for EDS (and I have dislocated during massages before), but my partner is very good at gentle pain relieving pressure on sore points.

I have a tens machine, blood pressure monitor, oximeter, Apple Watch, nebuliser, blood glucose monitor and oxygen concentrator at home, all of which help with monitoring better and sometimes treating. Of course not all necessary for EDS, it depends on other diagnoses and prescriptions. These were essential for me during the most dangerous phase of the pandemic, before vaccines. The Apple Watch was actually recommended by one of my cardiologists. 😂

I also have a stationary mini recumbent cycling machine for physio. This is recommended even for quite unwell patients because it is the best exercise for POTS!

We have quite a strict routine as my body seems to prefer that, but I also try to make the most of any good periods I get to do something a little bit more active. I have severe EDS and POTS with other comorbids so am quite limited, but have further treatment options still planned (for symptoms not EDS itself). So not despairing.

I will do another post soon about the meds I find most helpful. Of course this will vary a lot from person to person.

Please ask about anything that is unclear 💛

(My situation with EDS is quite rare and definitely not the norm - for anyone who is here because of a child, this is not the typical EDSer life. Most people basically live normal lives with a few adjustments. I'm sharing info in the hope it might be helpful but I don't want to give the impression this is what EDS is usually like.)

@Innocenta Wow. I'm sorry you are having such a tough time with it. And it's very good of you to be so reassuring that it's not everyone.

@Innocenta Wow. I'm sorry you are having such a tough time with it. And it's very good of you to be so reassuring that it's not everyone.

@Innocenta so sorry, you sound just like my poor mum. Thankfully I don’t have the asthma and only some random allergies, but she was on CPAP 18+ hours a day for her last few years. I don’t know that she was ever diagnosed with EDS, though looking back she clearly had it, everything was blamed on 50+ years of oral steroids every day.

I messaged my half brother yesterday to tell him about my diagnosis and that it’s with him reading through symptoms, and if any ring bells getting checked out.

I was recommended an Apple Watch too by a cardiologist, I was referred for arrhythmia and high header rates when I moved, and was just told yes and if you want you can have beta blockers. The rheumatologist liked back at findings and said likely POTS and so I’m waiting for a tilt table test.

DS13 has just been diagnosed with migraine and POTS too, he struggles standing up and gets dizzy exercising, any tips/things we should be asking for? He tries to be active but it’s scaring him a bit, GP just said to make sure he eats before exercise but school not keen

My dd is 12 and got diagnosed with EDS at 7. She has always scored 9/9 on the beighton scale, and also has the typical skin / bruising. Thankfully heart scan was ok, but needs another at 18. I've always been very wary of admitting to people about dd diagnosis, but it is becoming more obvious as she is getting older. She has never been able to walk far, fatigues so easily. She is under care of podiatry who have given her insoles and these have helped a lot. When she was younger she wore thumb splints, but she refuses to wear them now. The OT provided these, she is also open to physio. She can dislocate many parts of her body on command (we do obviously discourage). She has recently started her periods and these are very heavy. I'm not sure if that is related to the EDS or not. If I google anything it scares the life out of me, so I don't. I am concerned about her getting older and her wear and tear of her joints and ability to carry a pregnancy to term. Dd had 'signs' from being a very young baby.

Hi, I’m fairly sure my dd has Eds but I am having so much trouble trying to get a doctor to take it seriously, she is 17 and is hypermobile, has a lot of joint pain, has CFS/ME, very low blood pressure and high heart rate (so not sure if it’s POTs or not), extremely painful periods and a range of other symptoms, including pain relief being useless not working, but the doctor only ever wants to discuss one symptom at a time.

when I asked for a referral to a rheumatologist the gp said she would check first and did a review of the hypermobility (even though a physiotherapist had already said dd was a 6/7 on the scale), she had to read from a sheet of paper and looked things up on line and totally messed it up, saying dd was only 3, even though she missed some of the areas, (for example dd can push her thumb back to her wrist on both sides but has permanent damage on one side with a lot of pain so refused to do it, but we made it clear she could, the gp refused to include that as a point)she then refused to refer because of this.

so I am going to try again, I’ll do it on line so I can write everything out without getting flustered, I think it doesn’t help because dd is also autistic and struggles to talk to doctors so I do a lot of the talking for her, which I think the gp just sees as a pushy mum.

If that doesn’t work then I may need to go private, but I really don’t think I should have to. Any ideas on how to get the gp to listen?

@NotThis I'm really sorry your DD is so unwell! It is worth having a full private evaluation if you can pay for it, but I suggest being very careful with any doctor you see about saying you're convinced she has EDS or anything similar (unless there are many other confirmed diagnoses in the family). A lot of doctors are understandably cautious about people diagnosing themselves, especially as quite a few of the things you mention are not specific to EDS at all x

@Hairyfairy01 aww, your poor DD, I'm sorry she's having to deal with heavy periods too. It's not 'related' to EDS as such but she may find it much harder to cope with. With anyone who has EDS it is 100% worth trying to treat and optimise all their problems (where it is bothering them) because keeping everything as well and managed as possible is better than letting different things get worse bit by bit.

Try not to let stuff you read online get to you too much, the people who decide to become influencers are often a bit dramatic, and you get more views/money by talking about the bad things! I have known many EDS influencers and it's a bit of a dark world. This tends to also even affect 'official' EDS resources to some extent. One of the worst aspects is how scary it can be for parents and newly diagnosed people. Most people with EDS live essentially normal lives with the addition of some physio, maybe some meds, and a bit of adaptation to help them where necessary xx

@Matchingcollarandcuffs I'm so sorry your poor mum was so unwell! And also to hear that DS is struggling Is he seeing a specialist to support him with the migraine and POTS? The good news is both are incredibly treatable with, genuinely, dozens of options. Treatment has improved so much. I know it must be scary but I am very confident he can be helped with his symptoms.

Tilt table tests are not pleasant but it's good to know all the detail about what's going on with your body 🤗

@Hairyfairy01 - can i ask why your dd needs another heart scan at 18? Dd had one at 11 or 12 and we assumed as it was clear, that was it, she doesn't have vascular EDS, not that anyone mentioned EDS at the time.

Thank you inno. I do try not to read too much online, but sometimes it does get to you. Interesting that probably the heavy periods aren't related, I'm not sure why o ever thought they were to be honest.
Dd had a heart scan when she was 9. The consultant wrote a long detailed report and in that said that even through the heart appeared normal he would recommend redoing it around 18 years of age once she has gone through puberty. I'm not quite sure why this is to be honest. She has been diagnosed with type 2 (hyper mobile) type.

@Hairyfairy01 I wonder if the reason why it feels related might be because DD feels worse around her period, or possibly because you've read about hEDS sometimes worsening during puberty? The hormones can exacerbate it, but there's not a direct linkage if that makes sense - plenty of women with hEDS have totally normal periods. But if it seems like your DD is experiencing a connection in how she feels, you're probably not wrong!

@OchonAgusOchonOh Because vascular issues can sometimes occur with hEDS too, some doctors like to have heart scans repeated at intervals to check that the heart and major blood vessels around it are still in good condition. Obviously I can't say if that's what was intended with Hairy's DD, but it's a common reason.

I have regular scans but I have a cardiac defect as well as EDS.