Is this a syndrome?

[MysterySolver]

I’ll get right to it.

So, I’m one of these people with nebulous health issues that are not individually serious: IBS, anxiety, depression and other psychiatric issues, mild hypermobility, a lot of allergies though nothing life threatening, skin problems that are difficult to describe, issues with blood sugar, blood pressure etc.

So is my DM with a similar but slightly different set of issues, especially joint problems, heart issues, skin problems, allergies.
So was her DM, with all of these plus some rheumatic stuff.

I’m very fed up of not really feeling well but not really having anything that can be fixed. So when I’ve googled all this, what keeps coming up is Ehlers-Danlos Syndrome. However, I’m pretty sure I don’t meet the criteria as I’m not sufficiently hypermobile, for one and my skin problems are a bit similar but a bit different.

Yet for me, DM and DGM something about this rings true. Is there something that’s similar? Could there be some conditions out there we don’t yet understand?

Would love to hear from anyone with similar experiences, just to feel not alone.

The criteria for a diagnosis of EDS were changed in 2017 and are stricter than before but there is Hypermobility spectrum disorder ( think that’s what it’s called) which means you have symptoms on the same lines as EDS but not enough/ measurably enough to get an EDS diagnosis. If you are pretty sure you and your family members don’t meet the official criteria you could have HSD.

I was incorrectly diagnosed with fibromyalgia until one of my adult DC was diagnosed with EDS which led to me getting a referral and correct diagnosis in late middle age. No one had ever put all the weird and wonderful things I had together and treat them individually up till then.

Glad you got the right diagnosis in the end!

Interesting that the criteria have recently changed. I guess that’s an indication that these things are not fully understood yet.

Thanks Mystery. Hypermobility and EDS come under rheumatology so if you wanted to try get a diagnosis they’re the ones who are able to make it.

Thank you. I was seen by rheumatology for joint pain about a couple of years ago where they diagnosed mild hypermobility (but not as a syndrome as far as I am aware) aggravated by pregnancy. They told me to take supplements. I had bloods, X-rays and a basic physical exam. Had never heard of EDS or similar at the time so I was just glad it wasn’t something like arthritis and went on my way. Previously I’ve been tested a couple of times for observable coordination problems potentially caused by something like MS but upon investigation they only found isolated optic neuritis. Dyspraxia negative.

It’s just that taking all the nebulous issues together, and just generally not ever feeling good, I just wonder if there is something larger. I feel a bit frustrated as I’ve had many investigations over the years and I’ve definitely now got the hypochondriac label, which on the one hand is deserved, and I do admit to being anxious and having psychiatric things going on. But I do also believe there is something underlying that links these issues and that those issues might be wrapped into a physical problem rather than the other way round.

The investigations usually always find something, but just something relatively minor, and that’s that. But nothing has ever been considered together, only in isolation.

I can relate to a lot of your last post. I rarely have a day where I feel well and wake up refreshed, come round after half an hour and ready to start the day. When I do I imagine it’s how normal people must feel and it makes me sad that it’s just a few days a year I might feel like this.

You do feel like a hypochondriac when you’ve got so many different things going on so it was good to get a diagnosis just so I knew it wasn’t all in my head. Would you consider asking for a referral to someone who has an interest in hypermobility and eds? I ended up at the Royal Orthopaedic Hospital to get diagnosed? You need someone who knows which issues make up hypermobility and other soft tissue conditions and doesn’t just look at a painful shoulder or another sprained ankle, wrist tendonitis etc

Thank you so much, that is really helpful. I’m going to look into it. I hope you are finding ways to manage your condition and having as many good days as possible.

Thanks and I really hope you manage to get a diagnosis (if you want to get one). It's good to have an explanation and get easier access to pain management, physio, OT etc. I got two nerve blocks recently that were helpful and I do find it easier to get better help since it's officially on my medical records.

Have a look at Dysautonomia, sounds like you could fall under that. I have similar issues.

Daydreamingholidays. I have baroreflex failure (a type of dysautonomia) as part of EDS. I can’t regulate my body temperature effectively, have had high, difficult to control BP since my early 20s, palpitations, excessive sweating, constipation and intolerance to exercise (most makes me feel sick to the point of vomiting). I stick to walking as that just makes me sweat but not feel sick.

The lack of awareness and help available is so frustrating, I have problems regulating my body temp too, I only gave mild symptoms but don't bother chasing the doctor about it as u feel there's nothing that can be done apart from adjusting lifestyle to help

Daydreaming. The lack of awareness is a real hurdle to getting adequate/appropriate help I agree. At a pain clinic assessment the HCP asked if I had a reason for so many painful joints and I said I had a genetic soft tissue disorder and she asked how long id had it! I only try get help for the most serious or painful problems and just live with the rest. I don't want my life dominated by chasing around doctors and hospital departments. Most things seem to be about self management I agree. It's hard work though.

Thanks so much @Daydreamingholidays I do feel dysautonomia fits into this somewhere. I need to read a bit further in on this. Sorry to hear about the challenges you’re dealing with. Appreciate your insight.