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.

@Innocenta , usually I wouldn’t make a suggestion to the gp, I’m autistic too so find it difficult but I’m desperate, my dd is really suffering, there must be a reason why she has so many different things wrong, and when we saw the cardiologist about the autonomic problems he had obviously read right through her file (he mentioned an injury to her shoulder that happened when she was 12), one of the first things he said was, had we heard of Ehlers Danlos Syndrome because with her range of symptoms it was definitely something to consider.

So we are going back to the gp on his advice, but I just wanted some advice on how to proceed really, my DD’s life is so impacted by pain and exhaustion it would be good to have a reason why, even if it’s not EDS.

I’ve also had issues with my joints when I was younger but the gp at the time just told me I had ‘funny joints’.

@NotThis Yes, I'm not saying you're wrong, only that doctors tend to react negatively to it when you say you know what it is. Unfortunately with this diagnosis in particular, there is a lot of suspicion and doubt around it. I am neurodiverse myself too.

I think seeing someone privately would be a good option for you if you can manage it. They will evaluate your DD for the various types of EDS but also for the similar conditions that might be mistaken for EDS or have overlapping symptoms. I know people who had an original EDS diagnosis and then turned out to have one of the other connective tissue disorders! (Again, not saying she doesn't have EDS as I'm sure you know better than I do! Just that it's good to have it all checked.)

@NotThis also I would definitely recommend your DD seeing an adult autonomic specialist if you'd be willing to pay for this and she'd be happy to see one. At 17 she is right between children's services and adult which might make it a bit difficult, but the best autonomic dysfunction doctors are absolutely amazing. It sounds like she is falling through the cracks and not receiving any real medical support (although clearly you are very supportive!).

I'm going to post about some medications I take, obviously what is right and what helps will vary from person to person so I am not suggesting anyone takes exactly the same! But just some things you can bring up with your doctor if struggling with the same issues.

Headache
I take a high dose of topiramate as a preventer. I was originally on sumatriptan to relieve them when I got really bad migraines (I had migraine pain daily but of variable severity, you can't take the reliever meds every day, though), but then cycled through trying different triptans on the advice of my doctor.
GPs can prescribe different triptans and some will work better for you than others.

If you get very nauseous you can try a nasal spray or injection version
I have anti sickness tablets for migraines (though I need them a lot for gastric issues too), and definitely recommend these. I mainly take ondansetron.
For the pain I take naproxen and paracetamol, occasionally an opiate.
Nortriptyline at night also has helped my migraines.
Neurology recommends: no or very low caffeine intake; daily meditation (evidence based for relieving chronic pain); magnesium supplementation.

For me the most helpful intervention of all has been medical botox in my head and neck.

Periods
I take naproxen and paracetamol
With a muscle relaxer, usually 2mg of diazepam (obviously do not drive! I can't drive anyway).

I also take buscopan, an anti spasmodic, as I find the menstrual cramps set off gastric cramping for me and cause abdominal pain all over.

I am prescribed tranexamic acid to reduce the bleeding as I rapidly become iron deficient (though I find it hard to tolerate these pills!). This is a very good treatment for many women who bleed heavily, though!

I would encourage any girl or woman who has heavy or even moderate periods + EDS to get a full blood count and ferritin test done at regular intervals (at least once a year), because iron deficiency is so hard to cope with on top of EDS, and the absorption issues EDSers sometimes have can be quite 'quiet' and just feel normal to us, so add in bleeding and it contributes to general feeling crap...

(I know it's a lot of info - don't want to be too overwhelming or negative! I'm sharing because GPs do not tell you these things, will not usually suggest combining meds in these ways, etc. Obviously you should never start medications without checking with your own doctor what is safe for you! But I think knowledge is power, haha)

@Innocenta thank you for all your advice, both about the doctors and medications, this is something dd has been struggling with as both paracetamol and ibuprofen don’t work well, she does have naproxen for her periods but the last one was so bad it barely responded to the naproxen , and ibuprofen with lysine sometimes work for her headaches , also there’s a new otc dual action ibuprofen and paracetamol that has been working moderately well with her headaches as up to now she was struggling to find anything that worked.

is the stuff that you use for nausea otc or from the gp as dd is nauseous a lot?

@NotThis It's fairly normal for paracetamol and ibuprofen not to fully take away bad period pain, so that isn't necessarily an EDS thing. I know you may have seen something about EDS and pain relief online, but it's not part of the diagnostic criteria (pain relief 'not working'), and is quite a controversial issue! I'm not saying her perception is wrong, just that the cause isn't necessarily EDS in a straightforward sense. Lots of women find that OTC pain medication is insufficient for period pain.

I would absolutely suggest talking to her doctor before adding anything I have mentioned in my posts, even the few things that are OTC! I can't in good conscience recommend giving a (probable) child EDSer any meds without medical oversight. It's very possible one or more might be helpful for her, but for example with the anti sickness, I think they'd want to give her a less strong one (but still effective!) to try first. There are many meds for nausea and they are really good!

I think your GP should be supporting her more even though the diagnosis isn't established 100%.

I knew about the possibility of vascular issues but I had assumed that a one off test would rule it in or out. So I guess she should probably get a heart scan again at some stage. I would assume that the cardio who tests for POTS would arrange that too?

@OchonAgusOchonOh basically the connective tissue is sort of 'floppy' and stretchy, and that can include the arteries and veins. Sometimes that can mean a person will develop an aneurysm that might need more regular monitoring - but it's rare, not something that is at all likely to happen with your DD.

It probably would be a good idea to get re scanned just to check that nothing has changed, but it's not something you need to feel any particular anxiety about. I have my scans done regularly because when they first did mine, they did find a problem, but it's all been super stable since then so I now just find the scans reassuring! And that's with something having turned up on the first one.

You can definitely talk to a POTS cardiologist about a repeat echocardiogram, and it's also something that can just be brought up with any GP (with the rationale that it's a fairly standard part of EDS care).

Thanks @Innocenta .

I have to say, the lack of knowledge in it medical profession is pretty shocking. Loads of them don't even really believe it is a thing..

Dd is studying medicine and she had one slide in one lecture on EDS in second year and that was vascular rather than hEDS. I know it's not really common but it's not that rare. They should at least know about it.

I hope this is the right thread for this!

I had an EDS assessment with rheumatology today. I went with a list of my symptoms, medical history and also medication. I performed the Beighton test, which the doctor said I scored a 8/9 on (the only one I couldn't do was put my hands flat on the floor without bending my knees). He said that, because it was only 8/9, and I didn't have really stretchy skin, that it was not EDS. He said it was most likely fibromyalgia and hypermobility, but that there weren't any tests to prove it, so that was that. I explained about my other symptoms (such as dental crowding, flat feet, bladder and bowel issues, migraines, joints popping and cracking, eye issues, pain everywhere, easily scarred and bruised etc) but he didn't seem too interested in them, although from my research I can now see they overlap with fibromyalgia, which he thinks I may have.

I'm just wondering if anyone else diagnosed with EDS had to have 9/9 on the Beighton scale, and also stretchy skin? My skin stretches a little, but not super elasticated. I didn't go in hoping I would get a diagnosis if it wasn't appropriate, but feel a little deflated that i've come out more confused than I went in! Any help would be really appreciated, and apologies if this doesn't belong here - please delete if so!

My understanding is that 70% ofd those with hEDS have stretchy skin, which obviously means 30% don't.

My dd was told by an orthopaedic consultant that she doesn't have hEDS as she doesn't have stretchy skin. He never actually checked her skin... She's been to a rheumatologist since who did check her skin and apparently, it is very stretchy.

The problem is, many of the medical professions in rheumatology and orthopaedics really don't have the necessary knowledge about EDS. If you don't have 100% of the potential symptoms, they assume you don't have it. How expert is the person you went to in EDS? If not particularly, it might be worth seeking a second opinion.

Thank you! I knew it was a common symptom, but wasn't sure if you had to definitely have it - and I now know you don't! I'm so glad your dd was able to get the help she needed from a second opinion.

I'm not sure how expert he is - he is a rheumatologist so I would hope has a good amount of knowledge, but I know from here and other forums that's not always the case.

I am also considering getting a second opinion, just because he made me feel quite uneasy - when I said I got migraines he said "are they really? Or are they just headaches?" when I have been under neurology care for years, take multiple medication, and get severe symptoms - I think I might know! Just felt a bit patronising, and felt dismissed quite early on in the appointment.

Thank you again for your response!