Does anyone else here also have Ehlers-Danlos Syndrome in addition to diabetes? EDS is a genetic connective tissue disorder (dominant inheritance pattern, or can be a new mutation). I have the hypermobility subtype, which comes with hypermobile joints throughout the body, muscle pain/chronic pain, and often dysautonomia and unusually soft skin. (There are other types that also have more skin symptoms, like really stretchy skin, and some types with more vascular symptoms, since they are various connective tissue disorders.) It’s also associated with an immune disorder called Mast Cell Activation Syndrome. Anyway, it’s made dealing with diabetes more complicated in a number of ways (dysautonomia makes me hyperreactive to hypoglycemia symptoms, which has pros and cons, the joint stuff has made exercising very challenging since I’ve gotten hurt doing super mild stuff like using an elliptical, etc). Just curious if there are on here with it… I’m guessing it’s a long shot, since EDS is rarer than diabetes, though it’s also very under-diagnosed.
I’ve met someone who has it but did not have T1D. Interestingly, the issue with the connective tissue in the gut has made her allergic to a whole host of foods, which I thought was an interesting connection to diabetes as gut microbiome has been implicated in the etiology of T1D.
Sorry can’t help you with your question though!
Interesting—my guess is your friend actually had those sx because of Mast Cell Activation Syndrome—basically, mast cells are hyperreactive, and so the person has to go a low histamine diet (which is a lot weirder/more random-seeming in its many restrictions than most other diets). MCAS is highly associated with EDS for unknown reasons. I don’t seem to have that, or at least not to the level of needing a restrictive diet for it (yet anyway, knock on wood, although I do have a sunlight allergy which may be related), but given that mast cells play a role in islet cell destruction, I’ve wondered if there’s some overlap in how Type 1 happened for me, especially since I have no family history of T1.
I don’t have it. But I have a whole host of various allergy issues, and one of the conditions I have is apparently associated with connective tissue disorders, so one of the groups I’m in has a good number of people with EDS (and also mast cell disorders).
I didn’t know mast cells were involved in the destruction of beta cells. I’ve had issues with allergies my entire life, including a severe case of cold urticaria (basically an allergy to cold, that in my case was severe enough to cause anaphylaxis) that developed about a year before I was diagnosed with Type 1 and (thankfully!) disappeared in my early 20s.
I know this thread is old, but I do! I was recently diagnosed with classical EDS. I was diagnosed with type 1 diabetes 13 years ago, dysautonomia 2 years ago, POTS and gastroparesis 1 year ago. EDS is kind of like the missing puzzle piece, everything makes sense.
Hi! I totally know the feeling—I hadn’t been diagnosed with POTS/dysautonomia formally before my hEDS diagnosis, but thanks to a smart neurologist a long time ago, was already on a beta blocker to treat it (which helps a lot, but def doesn’t fix it). Sorry you have to deal with all of that too, but if you ever want to chat about it, let me know!
Have you tried insulin pump therapy - has it helped control the diabetes with the gastroparesis?
Hi there. I know your post is older but saw some huge similarities so I wanted to reach out. I was diagnosed with Type 1 when I was 22 - 13 years ago. I have always had joint and muscle pain, but it was exasperated during and after pregnancy. I believe I have a form of EDS as well but have not been diagnosed. I can’t seem to find a doctor to find out what’s going on. I also have an allergy to the sun and heat where my skin doesn’t sweat properly, loose skin, bruise easily, prolapse. Would any of you have recommendations for a doctor that can get to the bottom of this so I can get the right treatment? Thank you and big hugs to you all for being so brave!
Liz, I just wanted to welcome you to the forum. Unfortunately I don’t know any answers for you, but I am sure someone will be able to help you.
Is there any way I can private message you on here? Just wanted to ask you who your doctor was that diagnosed your EDS? I live in Ontario, Canada. Thx!
Hi! I’ll PM you re: doctor info, but in case anyone else reads it, I saw a geneticist who specializes in connective tissue disorders. Generally a geneticist needs to make the diagnosis, at least in the US (and possibly Canada?). This is true even for forms, like hEDS, where the genes have not yet been isolated, so you can’t test directly for it. Often they want to rule out other CTDs though, depending on clinical presentation. In the UK I believe it’s different and rheumatologists are involved; here they generally do not.
Yes. Its not quite the same thing. My diabetes is type 2 and hereditary. A lot of my family has the combination, but I’m the only one actually diagnosed with hEDs. I’m also the only one, living, with a sunlight allergy. In my case I know they are not related. The hEDs (including allergy) came from my maternal grandmother. The diabetes came from my maternal grandfather. While I would not wish this on anyone, it is nice to know I’m not the only one to have all 3.
I have duputrens contracture and lederhosen disease.
Which are both similar connective tissue diseases.
I also had frozen shoulder twice.
I get lumps and cords in my hands and marble size lumps along the arch’s of my feet.
My hands are not severe and don’t bother me at all.
My feet hurt quite a bit as you can imagine if you threw a handful of marbles into your shoes and then walk in them.
Still I walk several miles a day but I usually wear flip flops because it’s my only possibility. Even tho everyone tells me never wear flip flops ha!
There is no cure. I’ve had the ones in my feet injected with steroids but it’s a temporary fix.
I was told it is genetic and not truly diabetes related however there is some correlation.
I have hEDS (hypermobility type). Currently only diagnosed with reactive hypoglycemia, but I have had some bg numbers over 200 when I eat a meal w/40-50g carbs. I have symptoms of POTS according to my cardiologist, just not formerly diagnosed (testing is forthcoming). I also have possible MCAS. Genetics thinks that causes some of my gi issues. I have interstitial cystitis, which my obgyn says is thought to be mast cell mediated. A daily Claritin currently works most of the time, which gives even more weight to the mast cell possibility. I am most definitely going to research mast cells and it’s effect on islet cells!
Personally, I find Zyrtec more helpful than Claritin, so if it stops working, I’d try that switch. I also found adding both an H2 blocker (e.g., zantac, pepcid—they are antihistamines as well as antacids and really help with MCAS effects on GI tract) and Singulair/montelukast a huge help for MCAS.
I don’t think at this point my hEDS and diabetes are related having looked into it more. But it definitely is complicated having both, especially since eating low histamine, which is essentially for managing my MCAS, makes it much harder to eat low carb (many convenience proteins and high fat foods are high histamine). I’ve gained a little weight and had my A1c go up a bit since I changed my diet to be low histamine, but I’m also much more functional, so it’s really not an option. Part of why I think having an A1c in the 5 range in part tends to reflect the luck of not having multiple, intersecting chronic health problems involving lots of inflammation and at times contradictory treatment approaches–I don’t see a lot of people with super tight A1cs with that kind of complex presentation.
I’ve thought about adding Pepcid. Unfortunately, I can’t do Zyrtec— it makes me way too groggy.
I’m glad you are more functional now!
If you have stomach stuff, definitely try it! H2 blockers are key in my and many others’ experience for EDS-related GI symptoms (doesn’t fix them, or make me able to eat high histamine foods, but takes the edge off for sure). I think Zantac works even better than Pepcid, so I hope they bring it back on the market soon, without the impurities issues that caused the recall.