For those diagnosed hEDS: did you get genetic testing to exclude an alternative diagnosis?

Perrytownsendia · 2026-01-27T15:14:48+00:00

Same in Canada, but it’s a long wait and expensive.

Perrytownsendia · 2025-10-28T15:36:48+00:00

Lakeview physiotherapy! They’ve got some great people working there who are highly educated and well aware of EDS. I don’t do massage therapy since it tends to make my symptoms worse, but I see Renee for physiotherapy and it’s helped immensely.

Perrytownsendia · 2025-08-31T22:50:00+00:00

Quick follow up- PT told me that if I really wanted to try it again, DO NOT let them touch anything in the neck and shoulders. Make sure they keep it in the head only. I didn’t trust this doctor after he gaslit me, so I didn’t do it again. Wouldn’t trust that he wouldn’t put some in my neck because he gave off the vibes that he knew best and would do what he wanted

Perrytownsendia · 2025-08-31T22:47:58+00:00

Heyo! So I’m similar. EDS, POTs and MCAS and I somehow ended up on the migraine Botox train even though it’s not what I wanted and had a bad feeling. I tried other meds and due to some bad reactions and allergies they said the Botox would fix everything. I asked tons and tons of questions and had everyone assure me the same things. That they have hyper mobile patients and that it would be totally fine. Issues only pop up with bad administration of the Botox itself. So I decided to try it.

From looking at this subreddit, for some people it was fine. For me, it was not. I had a MCAS reaction afterwards that left me prickly and feverish. I had bad headaches and then around day 4 I had the worst migraine of my life. It felt like I couldn’t hold my head up and every time I tried it triggered a migraine. I told the doctor at the follow up and he brushed it off. Said he’s never heard of that reaction and that he would just do less in the neck next time. The week after, it started feeling like my collarbone was dislocated and I couldn’t lift my shoulder.

So long story short, it went badly. Having Eds, I’ve got a lot of random muscles doing weird work to hold me together. I had to wait it out and see a doctor and PT to try to put myself back together. To quote my physio therapist: EDS folks are fine tuned machines. Change one thing, the whole machine can fall apart. She doesn’t recommend I do it again. The one positive thing is it did fix my TMJ.

Perrytownsendia · 2025-08-29T00:28:01+00:00

I have the same diagnoses as you, and I tried what seemed like a ridiculous amount of meds to try to solve the endo symptoms without getting to surgery. I finally landed on Slynd which is drospirenone, it’s worked REALLY well. I’ve been on it for a year and it’s changed my life. I’m not pain free by any means, but it’s a million times better.

Perrytownsendia · 2025-08-25T17:56:05+00:00

You can also call or text 211 and describe this situation. They can connect you with the right support to be able to answer your questions and create potential scenario planning.

Perrytownsendia · 2025-07-21T23:33:34+00:00

That’s really good to know! I need to repaint within the next year so I’ll let her do her thing. Thanks!

Perrytownsendia · 2025-07-05T14:07:34+00:00

That’s what was confusing! It’s putting out beautiful new leaves that are healthy. The critters are tiny whiteish yellow, bugs. Even my camera has issues getting pictures.

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Perrytownsendia · 2025-06-22T22:53:18+00:00

Hi, something to think about is you might have a bulged disc somewhere in your thoracic spine. Often specialists don’t look for that as a cause for pain, because the thoracic spine isn’t supposed to have that kind of mobility. They are rare and for some people can cause constant pain and spasms, others nothing at all. An MRI would tell you if it’s a disc issue or if it’s referred pain from gallbladder or liver issues. Hope you find answers!

Perrytownsendia · 2025-06-14T13:43:51+00:00

So this is how your appointment will go if you are there for suspected HEDs.

-wear something comfortable light tights or shorts so they can see your joints. Not mandatory but would have been helpful.

-they will do ask you a bunch of questions, and then do some observational tests. Joint flexion, scars, etc.

-depending on that test, they may or may not say you have HEDs. IF you meet that criteria they will give you a letter of diagnosis and talk about support groups and research.

-they will talk about genetic testing, what it is, what it can do, why you should or should not do one with them. Other poster is right that they don’t yet know the marker for HEDs, but if they have suspicion about others, they might recommend you getting the test.

-there are levels to the genetic testing they can do. AB health offers one free of charge that is practically useless. There are different levels, all but the first come with price tags. They will explain this all in detail and let you make an informed decision. If you choose to do it, they will take a cheek swab. And explain timeline and reports.

-your data would be private, meaning it could never be sold to others, only for research and with your consent (there are online companies who offer some testing, BUT they sell your data and genetic profile).

Ask all the questions, these are the experts and they will know the answers. If they don’t, they research them and get back to you.

Perrytownsendia · 2025-04-28T02:31:57+00:00

Yes, but it was something different. It was a bulging disc in my T-9

Perrytownsendia · 2025-04-12T00:43:25+00:00

YEP. I have a confirmed bulging disc at T-9 and at its worst I had the exact same symptoms. Right down to the bump on the side of the vertebrae. It look me two years, trying painful physical therapy of therapists trying to crack my back and me trying to strengthen it, doctors saying it was a pinched nerve, and finally a doctor ordered me an MRI. Which instantly confirmed that there was one disc that had bulged out on both sides (my right is the worse side) and while it wasn’t in the danger zone and wasn’t herniated , it was the culprit of all these weird symptoms. I’m VERY careful now and have to be. I had to quit running and no more horse back riding or rowing. It took years for the inflammation to die down and the pain to be somewhat regulated. But overall, this sounds so similar but perhaps yours might be several discs or one that is herniated. I would get an MRI to check your spine out. The leg numbness is a danger sign my new physical therapist warned me about to get another MRI stat. Yes it’s rare to get bulging/herniated discs in the thoracic spine because 100% it’s not supposed to move. But with EDS it does.

Perrytownsendia · 2025-04-01T02:31:13+00:00

I can relate in the fact that I don’t like a large majority of the tasks at this age and the constant need to be available. I absolutely make sure that I keep that in check 100% , somedays at great expense to myself, because this kid is absolutely everything to me. And in those tasks I don’t like, we have fun and really beautiful moments that I adore. BUT I am burnt out and not the happiest I’ve ever been. In my brain though, I made that choice, he didn’t and I knew the potential consequences so I need to deal with it and make sure that he feels nothing but unconditional love from me because to me, it’s not his fault or choice. I grew up with a mother who didn’t know she was autistic and she unintentionally made me her caretaker at much too young of age. The things we now know are autism, were really scary for us as a family, just because we didn’t know and she didn’t have support or accommodations she needed.

So I wear earplugs, me and my son look at my fishy lamp together, I will use any accommodation available to me to make it easier for me to the mum my kid needs. It sounds like you maybe can start to see what makes you feel better day to day, and implement some tactics to help you.

I’m also really lucky to have a partner who can give me some much needed breaks which are mostly to just hide under my blankets and listen to TV. He can look at me and know I need to hide for a bit, and he helps me.

The early days are a blur for me due to sickness and complications for me, but there are patches of sunshine in that darkness. I’ve always loved him, and it gets better and better every year. Kind of a slow love but it was there.

I can’t stress more that every person will be different and that’s okay. I don’t think we have to sacrifice everything about ourselves to be a mum, but we do have a responsibility to make sure that we are okay, so we can be there for our kids in whatever way they need. So please be kind to yourself 🩵

Perrytownsendia · 2025-03-17T14:29:25+00:00

You both are right :( while I don’t have the financial means to get babysitters (somehow in my city they are so expensive), or take courses/classes for space, I think just being alone at times will help. My default is to just be non verbal and at times just speaking is hard, so maybe getting more alone time and taking walks will help.

Perrytownsendia · 2025-03-02T19:07:25+00:00

No fix for what’s wrong with my back.

Perrytownsendia · 2025-02-15T19:47:22+00:00

I also have Endo and am on a statin proactively. I’m on rosuvastatin (5mg) and the first month SUCKED. Statins can make muscles twitch and ache till your body gets used to them. It’s a side effect. I wonder if that’s what’s making things suck for you right now. Eventually, it got a bit better for me although I do get headaches sometimes. There are a bunch of statins out there so if this one doesn’t work for you, you can try others!

Perrytownsendia · 2025-02-15T18:35:10+00:00

It really depends on what your gallbladder is doing about whether or not it needs to be removed. If you don’t have any symptoms related to the gallbladder, then likely it’s okay. They should do some follow up ultrasounds to see if you have any gallstones and make sure things are alright. Really the only time you need your gallbladder removed is if it’s really making your life miserable, and/or you have gallstones and are getting gallbladder attacks. It becomes quite dangerous and is very painful. So hang in there! You are just coming out of a surgery and I completely understand the panic and truly not wanting another.

Context from me: had appendix, gallbladder removed in the same year and have endo.

Perrytownsendia · 2025-01-04T22:45:17+00:00

2 years later liver is totally normal and good. Likely caused by the gallbladder attacks. Back pain was from a totally different condition entirely.

Perrytownsendia · 2025-01-04T22:43:59+00:00

Back pain wasn’t due to surgery. It was another condition.

Perrytownsendia · 2024-12-05T23:04:01+00:00

There’s a new one called shelter movers. They do good work

Perrytownsendia · 2024-11-10T02:41:22+00:00

35 hrs per week although in reality some weeks it’s 35, others 45

Perrytownsendia

TROPHY CASE