Does this sound like Ehlers-Danlos syndrome?

[Qwertyskew]

Just want to chat because I think I've found an answer to why I feel so crap and wondering if anyone with any experience or knowledge has any thoughts.

I have the following symptoms:

Hypermobility (not been told this by a medical professional, but by looking up on internet - I sit with legs in W shape, can "pray" behind my back, touch my forearm with my thumb, bend my toes at right angles to my feet and other things that apparently only people with hypermobility can do)

Pain in quite a few of my joints, and frequently having to click them back into place.

Feeling tired and achy all the time.

Losing balance quite frequently.

Feeling dizzy quite often, especially after standing up.

Stomach problems.

I know no one can could possibly diagnose me over the internet, but even if you think this could be EDS, is there any point in seeing a doctor? Is there anything they can do other than diagnose, tell me to take painkillers and send me on my way?

If you think it is worth seeing a doctor should I bring up the possibility of EDS myself, or will the GP just roll their eyes and think 'I'll do the diagnosing round here, thank you very much.'

I'm worried I'll look like a hypochondriac who wants the "cool" health condition (I don't think I'm a hypochondriac, the last time I saw my GP was about 6 years ago with very obvious massively swollen neck glands - but what if I am and just don't realise it?) or what if the GP thinks I'm just lazy and trying to find an excuse to be signed off work (I really don't want to be signed off work - I need the money.)

Anyway, thanks for reading, sorry I got a bit rambly and I'll be grateful for anyone's thoughts and opinions.

It's certainly a possibility, but IME it's very hard to get a diagnosis now even with obvious symptoms.

I have my diagnosis from years back, but have since met my DP with very similar (identical even) health problems - to the extent that if I were a professional I'd diagnose her. She can't get an appt to see anyone, doctor says there is no point anyway, a diagnosis won't change anything. Now bearing in mind that my health deteriorated to the point that I need a wheelchair!

Last time she cried to the dr, we came away thinking that he was under the impression she wanted to claim benefits for it and was only there for that. It really upset her and me.

Back when I got my own diagnosis I always went i with the approach that hypochondria is a diagnosis of its own, and if the dr believes I am delusional then they simply have to treat that instead. Years of illness later though and I've lost a lot of that fight.

Sounds like it to me. I have it too. To be honest, I haven’t found that being diagnosed has helped much. They aren’t really that interested in helping you post-diagnosis. They just tell you to do Pilates and “pace”. I just look for solutions to my specific problems myself.

Thank you for your replies. I'm sorry your partner is having such a hard time, BeyondFlube, it must be hellish for her feeling so bad but not being listened to by her doctor. That's one of the reasons I feel hesitant about seeing a doctor.

I was afraid there might not be much that could be done, AFire. Don't know if it would be worth trying to get a diagnosis.

Is it helpful to be able to put a name to your suffering?

A few days I started to lose my balance while standing at a bus stop and a man waiting there kind of sneered at me and said nastily 'are you drink or something?' I just said no and turned away, but kind of wish I could have been able to give a reason.

Could be hypermobility syndrome rather than an EDS type but ask gp to refer you to specialist

www.hypermobility.org/pages/category/hypermobility-spectrum-disorder

Could be. Me, dh and all our dc have it with dc2 being the most severely affected.

I've recently, after years of suffering finally been given a formal diagnosis by a consultant rheumatologist of Fibromyalgia and Hypermobility Spectrum Disorder. My GP did take me seriously and put in the referral to the hospital and it came through very quickly. I am now on some medication that is definitely helping and I'm so glad that I went.

I've just been diagnosed with Hypermobility Spectrum Disorder. The rheumatologist said it would probably have been diagnosed as EDS a few years ago but now they don't push it. He asked if I wanted to go to see a specialist in London (I live in the Midlands) but they might not accept me and it wouldn't change anything. I went to see him because all my joints are so incredibly painful and my GP was going down the route of some sort of inflammatory arthritis, but it's not.

I've known I've been hyper mobile for years. I had severe SPD when pregnant and still do 23 years later, am very bendy. I have terrible stomach issues, I was diagnosed with Ménière's disease 25 yrs ago but there's some dispute about that now so will talk to my ENT consultant about this Hypermobility Spectrum disorder diagnosis when I see her.

When I saw the rheumatologist DS2 was with me so he asked if he could have a quick look at him too, and he said it's almost 100% he's the same. I think DS1 is, too, but he's a soldier so he won't push for a diagnosis because it will end his career.

Thanks for the link, EmbraceLife, I haven't heard of hypermobility syndrome before, so I'll have a good look at that website.

Wow, that must be hard for your family, elliejj!

Feeling extremely dizzy when standing up could be POTS, which is linked to hEDS.

Do you have a Fitbit? If so, you could use it to see what your pulse is after sitting down for 10 minutes. If you then stand up quickly, and your pulse increases by more than 30 beats per minute, that could be POTS.

Thanks for your replies, LunarPhase and TheFairyCaravan. It's good to know that your doctors did take you seriously and I hope your diagnoses help you.

I think I probably will make an appointment about the possibility of EDS or hypermobility spectrum disorder.

I don't have a Fitbit unfortunately so can't check my pulse when standing up.

It doesn't happen every time I stand up, but when it does it can be quite bad. Everything goes black and for a few seconds as I come round I have no idea where I am or what I'm doing.

It could well be, but you probably won't have much luck with your GP. They don't tend to diagnose EDS hypermobility type anymore, and GPs know so little they just brush off symptoms. I got my diagnosis from a private muscular skeletal doctor and even when I went back to my GP with that diagnosis he said "hypermobility doesn't cause any problems and he's a leaflet from 20 years ago", I kid you not.
I've learned that hormones play a major part in how I am, and have learned to manage my symptoms. I have had to make permanent lifestyle changes though.

The criteria for HEDS was clearly defined a couple of years ago, it's easier to check for yourself now, which you can then use to push for a formal diagnosis if necessary

ehlers-danlos.com/wp-content/uploads/hEDS-Dx-Criteria-checklist-1.pdf

Thanks for posting the HEDS criteria, UptheLagan. Very useful.

Sorry you've not had any help from your GP, Delilah. Must be very frustrating.

Looks like it's a bit hit and miss wether GPs can actually be any help to people with EDS or with similar symptoms.

Both of my daughters have been formally diagnosed with EDS at ages 23 and 25 respectively.
In hindsight it was pretty obvious from babyhood on... both had multiple dislocations, extremely hypermobile, poor skin healing etc Our local paediatrician taught us how to relocate elbows as they popped out so often,
But still took years to get someone to take them seriously.. eldest developed severe POTS (she has literally passed out everywhere you can think of and as shes now a junior doctor herself it makes wards rounds interesting....) and heart problems. And gastric problems.. she's on a ton of meds for both.
Younger sister has more dislocations ..she dislocated her shoulder recently rolling over in bed! She also has worse joint pain of the two. Both have chronic pain and fatigue.

I think it took so long for diagnosis (both are thought to have classical type but haven't had genetic testing) because they both manage as well as they can..one's a doctor,
the other a nurse and they just get on with it.
However.. the eventual diagnosis has been helpful for a few reasons:

1. Occupation Health is involved in both of their work places.. they are allowed to wear their braces/splints (infection control is an issue) and their shifts are arranged to try and minimise fatigue.
2. Both attend an EDS clinic where their problems are understood, and there is an EDS physio and also pain management clinic (different clinics as eldest lives 300 miles away ) 3)They can now explain if needed WHY they faint/ are unwell/have splints bla bla. It's real.

DH was also diagnosed recently... no surprises there, but it is worth, if you are thinking of going for diagnosis (and by the sounds of it you should) making a family tree and finding who else has similar problems!

I have eds as do both my children, diagnosed by rheumy. Diagnosis got me access to actually effective painkillers, but stage 3 is untreatable so was told to focus on my kids, which I've done. I work full time and get pip, although pip came before formal diagnosis, but it should help at renewal, also helps with thing like dentists as the anaesthetics don't work on me, plus calcium stones in teeth. Other than the painkillers I don't really see the point. I still get referred to inappropriate stuff without consultation but I just call up and cancel the appointments. Good for kids to get a diagnosis, means specialist physio and disability support at school.

Thanks for sharing your daughters' stories, StillMedusa. They sound pretty amazing, managing to do such difficult and important jobs while coping with their own pain and other difficulties. It's good to know that there are clinics if necessary and that Occupational Health can help at work.

If I do have EDS it's not as severe as your daughters'. I've always had a few problems with my joints and experienced dizziness from time to time, but it's only over the last few years that the tiredness and pain have crept up and started to feel overwhelming.

I would add to that, that depending on type and severity getting on with it gets increasingly more difficult. I was managing until about 2 years ago when my hips started dislocated just with walking. On crutches now and trying to avoid a wheelchair as long as I can, but I know it's coming. When that happens it will make work a lot lot harder as I travel around the UK and Ireland for work. Its already very difficult flying and using trains and visiting clients on crutches, I can't take luggage so having to carry a week's worth of clothes and equipment on my back! . As mine is severe, chances are both kids will be too. We also have the stomach issues and I have mcas and muscle spasms so there's stuff to just keep an eye on if you get regurg or upset stomach and rashes a lot go to the doctor and make sure they know about it! . There are so many weird symptoms that are all connected, that once you get a doctor to actually look through your medical notes you'd be surprised how much is down to that. If your GP doesn't know anything about it, there is a gp toolkit issued by royal college for them that explains it very well and it can help to show it to them or tell them about it

Flexigurl my DD1 also has mcas!
And yes the problems have increased considerably over the last few years.
As kids, they were unbelievably bendy and had dislocations.
As teens the gut issues (and in DD1's case) heart issues started to arise. Then POTS. POTS has been a nightmare for DD1 as she can go from her normal heart rate (which is very low, in the 40s like her Dad) up to 200... not pleasant.
DD2 has had more dislocations..just about everything slips out, and while they both struggle with chronic pain and fatigue DD2's is just awful. She moved back home after living away for a few years and at least it takes the edge of havin to manage daily home stuff on top of her (very intense..she's a children's hospice nurse) job.
Eldest works part time as a doctor as she simply can't manage full time.Youngest I can't see managing many more years full time.

Yet to look at them.. to slim, beautiful young women at their peak. Til you see the splints, and the very strong painkillers and all the other meds.

It affects just about every aspect of the body :(

Sounds exactly like dd who also has chronic fatigue syndrome diagnosis. She was recently seen by rheumatologist and diagnosed with hypermobility syndrome.
She has such awful pains in her joints especially her hips. She always cracks and pops when she moves. She is very hypermobile, eg can join hands behind her back and bring them up over her head to the front without letting go.
She didn’t get any help - just diagnosed and sent on her way.

Diagnostic criteria of hEDS:

https://ehlers-danlos.com/wp-content/uploads/hEDS-Dx-Criteria-checklist-1.pdf

The GP toolkit we use as doctors:

https://www.rcgp.org.uk/clinical-and-research/resources/toolkits/ehlers-danlos-syndromes-toolkit.aspx

It explains when to refer on and when to suspect a diagnosis.

DD2 has vascular eds. It was nice to have a name to put to her condition, though knowing what it is has not made much of a difference to her life.