EDS without the obvious hypermobility/flexibility?

[ProfessorBranestawm]

This is weird please bear with me.

Brief history:
POTS symptoms started around 11 (dismissed by doctors at the time)
Got very unwell after flu in mid twenties, got diagnosed with CFS/ME and they also confirmed mild POTS then.
Diagnosed with fibromyalgia a few years later as the pain was always a bigger problem than the fatigue.
Recently diagnosed with PCOS, not sure if that’s relevant.

Anyway lots of people have said I probably have EDS because of the fibro/POTS, they’ve even mentioned that IBS and even ASD (I have both) can be related?! I’ve always dismissed it because I’ve never had hypermobility issues. I’m not flexible at all other than my hips. I’ve never dislocated anything.

But I do have what I now realise are weird joint issues sometimes. The way I can tell I’m getting a pain flare is my elbows, they really hurt before anything else. I get pain in my upper arms when they feel like they need to crack right down the bone .

I also seem to hurt my joints easily. Joint pain has always been a problem generally such that I was checked for arthritis etc. The other day, I managed to strain my thumb just by putting in my mooncup it hurt for hours after just because I moved my hand at a slightly odd angle.

I’m not really sure why I’m posting as I don’t think there’s any point in following this up, there’s no medication or anything, I’m not able to work regardless, I’m just curious now as I’ve started to realise that actually a lot of my pain is joint related.

Any thoughts please? Particularly any issues/symptoms that aren’t the obvious?

EDS is genetic OP. So, do you think your parents and other family members have it?

You can find out for certain by having genetic testing. You may even by able to find out by sending off a saliva sample to one of these companies that offer genetic testing.

That sounds so familiar. I share your joint issues, but am only just pursuing a diagnosis.

What is POTS?

POTS is postural orthostatic tachycardia syndrome -it means that if you stand too quickly or for too long your heart races, bp drops and you can get very dizzy or faint.

OP google the beighton scale. It shows you the system for scoring hypermobile joints and the criteria.

What are your joint pain flares like? Do they come on quickly? Are they in the same joints or do you get them in several?

@avocadochocolate not all types of EDS can be diagnosed via genetic tested. Hypermobility type (used to be called type 3) is a clinical assessment.

OP have you looked at the other types to see if you identify with those?

Have you ever been flexible?

I score 9/9 on the beighton scale so all of the joints they include meet the criteria.

My skin is stretchy, I bruise easily. I don't respond to local anaesthetics normally. I have POTS, I have to avoid carbohydrates because I release insulin too quickly, and now I have heart issues too.

EDS is so wide ranging because it can affect all parts of your body so things that seem unconnected can actually be part of it.

I don't score that high on the Beighton scale. But bruises, local anaesthetic, stretch marks, tendency to injure joints doing nothing, various aches and pains... Reynauds, spontaneous burst blood vessels in hands.
Fatigue. IBS.

pickle I also have raynauds, spontaneously bursting blood vessels in my fingers (and occasionally feet), fatigue, joint pains. I have a couple of diagnoses (for the joint pain and fatigue) but nothing that encompasses the other things. What do you mean by local anaesthetic?

I had a spinal block for an op, and could still feel what was going on- they had to sedate me.
When I have dental work, they have to give me loads and loads before I get numb. Dentist is always surprised.

Ah that sounds familiar to me too. Sedation doesn't work that well on me either, I need loads of that!

Ah damn just lost a long reply. Thanks everyone for responses!

Yep my first and third births were horrific due to the epidural not working (and as for “the needle won’t hurt, you’ll just feel pressure” - bullshit!)

Bruise like a peach, intriguing about the insulin thing as I have some weird reactions to carbs.

I will look up that scale, thanks. I did google a bit the other day (and found some stuff about flexibility/hypermobility not being the be all and end all of symptoms) but got quickly overwhelmed!

No Reynauds but my joints do NOT like the cold one bit. It’s like I tense up to keep from shivering and I am in so much pain from the tensing.

The fact it’s genetic is the other thing that’s made me dismiss it TBH, I can’t see it anywhere in my family. Although mum does have issues with unexplained pain etc she is even less flexible than me.

My older two are, I think, slightly hypermobile, but not enough to cause any issues. They do heaps of exercise and don’t suffer from impact like I do, even a tiny bit on the trampolines the other day (had to go in with the toddler and I didn’t even really jump this time) my knees were agony. But that can just be weight related as despite losing 3st I am still far heavier than before I got ill. I can do low impact exercise now like swimming.

I score precisely zero on the Beighton scale :o both my kids would score a few though. I might test them tomorrow.

Impact is awful. I can't do digging or weeding, because my wrists hurt from the impact.
I've had sports injuries despite not doing sports- shin splints, tennis elbow etc.
I've been wearing orthopaedic type shoes for years.
I hurt. It's easier to list the joints that don't bother me than those that do.

So back to the drawing board I guess?

So many of the other symptoms match even down to the velvety skin thing but the main one doesn’t.

That sounds rough pickle
It’s amazing how many things I just don’t even attempt now. Even things like chopping any tough veg I can’t do at all. My wrists are super weak. I can’t lean on them either, couldn’t when I weighed much less

I’ve had so many wrist injuries from doing things like opening jars

There are lots of different types of EDS. I have the hypermobile type so only know the diagnostic criteria for that. Possibly other types have different criteria? Tbh, before diagnosis I knew that I was flexible but didn't think it was that abnormal. It was only after I was seen by different experts that I got the diagnosis. Plus I have real problems with my feet, hands and ankles being really hypermobile and those joints don't feature in the Beighton scale.

Maybe you could be referred to a rheumatologist to be assessed? See if you can go to a specialist in hypermobility though. I have got so much help since I've been treated by a unit with expertise in it (though I was initially referred for treatment of arthritis)

(I don’t mean like, injuries requiring hospital treatment. Just, immense pain for days that really isn’t normal, from doing something minor like moving slightly the wrong way when putting a mooncup in, or opening a tight bottle lid - normal people wouldn’t suffer so much from that would they?)

And the joints in my fingers are awful. This is why I have had so many blood tests over the years. No arthritis but often intensely painful apropos of fuck all.

I saw a rheumatologist maybe five years ago, one appt, they did the fibro pain test to diagnose that, and shoved me out the door.

Everything is put down to my existing diagnoses now. I missed mastitis recently because of it, so I’m guilty of it myself!

ProfessorBranestawm

The key for me was getting to see the right people. That was more of an accident though. I have crohns disease and one of the gastro registrars had a special interest in EDS and HMS because of a family history. She happened to see me one day and asked a professor to look at me. He was an expert in gut problems in EDS so he diagnosed me initially and then referred me to other specialists.

It really is just luck as to who you see. I am under UCLH in London and they run a HMS service there and the treatment is fantastic. They run rehab courses, pain management, I have hand therapy, podiatry, physio. But it has taken me years of problems to get to this point and we all realise that I would be in a better place had I had the right therapy earlier.

Hi OP..... your symptoms do sound a bit similar to my friend who does have EDS. My friend is a personal trainer. You can get stronger and fitter, which helps almost all health conditions. Maybe see an experienced personal trainer who can give you an exercise programme ..... starting with the absolute basics and gradually advancing.

See, I tried getting stronger and fitter- I've now got a dodgy hip from doing salsa! It's a bit 'no win'.

I was strong and active, then I got exhausted and started to hurt after gardening or going out for the day etc. Now I take ibuprofen before going out and about or doing anything energetic.

It isn't as easy as getting stronger and fitter.

I've just finished a rehab course at the hospital specifically for hypermobility.

The important thing is to learn how to use your joints correctly - and that is really difficult for people with hypermobility because we are often lacking proprioception so our brains don't know where our joints are.

You have to learn how to align your joints correctly and not got to end of range. This is so difficult. And most personal trainers/ fitness instructors don't get it. I've done so many classes where instructors have encouraged me to use my flexibility and now I know that isn't always right.

It's very complicated and really difficult to try to train your body to work in a way that doesn't feel natural.

I've started to actively engage muscles before using them. I don't let shopping bags dangle off my hands, I tense all my muscles to support them- carrying them slightly away from my body. Otherwise I swear my arms just stretched and my muscles tore! It's so easy to just force that little extra movement to reach for something. And so bad for me!

Agree it’s not simple, I have realised this from the fibro etc anyway. I was very nervous about joining the gym but did it on a whim as they had an incredibly good value offer, such that even if I only went swimming once a week (which I was doing anyway since new year) I’d still save money.

I am being very very careful - water based stuff is fine but my friends (not the ones who think I have EDS) don’t quite get I can’t do all the classes they do. Even if my CV fitness improves massively I may never ever be able to do the high impact, dance type stuff. And I’m fine with that!

I wish there was a simple blood test or something. I really haven’t got the energy for a fight I’m not sure is even worth it (in the sense there’s no treatment) - currently in a CAMHS battle for DS and it’s exhausting