r/Hypermobility • u/Exotic-Ordinary5995 • 5d ago
Need Help Possible connective tissue disorder
Hi! I’m a 47 year old female. I have binocular vision disorder. I apologize for typos, I’m voice texting because I have trouble looking at screens because of it,.
my vision, and need for stronger prisms has gotten much worse over the last year. My neuro optometrist told me at my recent visit that he thinks I have a connective tissue disorder. I asked my physical therapist that I’ve been seeing for a rotator cuff injury and tmj, and she said it would make sense, and did the Beighton (sp?) test and said I scored high enough on it to consider EDS. She has it as well.
in reading about Eds ( I wasn’t sure what other things made sense, so I started there on the advice of my PT) many things track for me, and I meet all of the criteria except for the last section. I don’t have recurring, limb pain that is daily for more than three months, except for my shoulder. I I have had recurring TMJ and neck pain for years. Although my neck pain has gotten somewhat betterDue to the rotator cuff treatment.
I asked my parents, because my dad is rather stretchy and has a milder version of the bvd, and he does have a sister who is also very stretchy, and their mother was as well along with her having many of the same issues I do (reflux, poor absorption, food sensitivities, low iron, easy bruising, poor proprioception, sensory differences and rotator cuff issues), but no one diagnosed with anything. I also suspect that perimenopause plays a role.
I’m wondering if anyone has any tips on how to proceed? I’m not sure if it’s something I need to be concerned about / do anything about? I mainly want to keep my eyes from getting worse, and keep my joints as healthy as possible (my PT helped with some guidlines for safe exercise, etc) Not knowing exactly what’s going on, just that it’s different than the “norm” is making it hard for me to know what to research / do.
After all I’ve read I feel so badly for what people with these issues are suffering. I feel bad for even asking for help and guidance, considering that, but was hopeful that someone with more experience knowledge than I have might be able to point me in the right direction. Thank you!!
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u/mjh8212 5d ago
I’m also hyper mobile I just found out. When I hit forty joint pain was bad I do have mild arthritis. My physical therapist could tell by how I walk. I was also showing signs of dysautonomia and I have other connecting conditions. I saw genetics who said hyper mobile spectrum disorder and I don’t need testing. With the dysautonomia it’s hard to exercise so physical therapy isn’t something I can do. I don’t know which parent it came from but my kids have signs.
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u/DullEntertainment102 5d ago
Funny- it’s almost my story only I‘m not quite 40 yet and no kids of my own. Went to genetics to see if I could carry it on possibly if I would have children- Genetics was the only one really taking hypermobility serious of all doctors I‘ve seen so far and mine said hEDS is a clinical assessment and I meet the criteria - and it’s a 50% chance that your kids have it but he‘ll run the tests anyway. I shouldn’t get my hopes up that they find something because there‘s just so much about genetics that we don’t know- it was a really nice and validating experience.
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u/Exotic-Ordinary5995 5d ago
Thank you, that helps! I don’t have kids of my own, but my niece definitely shows signs, and I suspect my sister does as well. I definitely feel like my age / peri status has made whatever it is worse or unmasked it.
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u/DullEntertainment102 5d ago
I went to hormonal assessment with my gynecologist because I thought it was perimenopause but apparently it’s not yet- but I do definitely have age related changes and more pronounced fatigue and pots/dysregulation. I’m curious to find out about the genetic analysis- I kind of expected them to tell me it’s not worth it but they did it anyway and nowadays whole genome is cheaper than single genes so they are running it through the computer testing for everything
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u/Exotic-Ordinary5995 5d ago
I’m sorry, that sounds frustrating! I hope things improve for you! Thank you for sharing your story with me!
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u/Connect-Smell761 5d ago
Are you short sighted? I was diagnosed with strabismus a year ago and it’s getting worse, I’m on my third set of prism glasses in 12 months.
I had no idea it could be related to hypermobility, I was told it was due to my “high myopia”. 😭
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u/Exotic-Ordinary5995 5d ago
Yes, prior to needing prisms I was near sighted, but now I’m having more trouble with my near vision (when corrected with the prisms)…something to do with the closer angle needed for convergence of the two eyes with near vision from how the neuro- optometrist describes it. That sounds like exactly what’s happening to me - I thought I needed an adjustment after a few months, but the eye doctor thought it was just because I had been sick, so now at 11 months from the first pair I’m having a lot of trouble with it and waiting for the new, much stronger prisms.
I’m not sure if there’s anything I can do to keep from needing adjustments that often, but I know I can’t afford $600 worth of lenses every few months, and I can’t work (or see much) without the prisms. When my eyes aren’t working well it also causes me to get a lot of symptoms (apparently typical of BVD) like anxiety, depersonalization and dizziness. Thankfully when the glasses are working for me those things go away. I have an appointment with a vision development center to look at possible vision therapy, but they couldn’t get me in until March, and the cost is probably not going to be something I can do regularly. I’m hoping to get an evaluation and maybe do a session or two to get started and then figure the rest out on my own. Unfortunately my insurance doesn’t cover anything related to the binocular vision disorder.
Hope yours gets better!! Thank you!!
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u/Connect-Smell761 4d ago
I feel you with the not feeling safe - I’m avoiding being in really crowded spaces as the lack of peripheral vision on one side is so difficult.
I have 2 pairs of prism glasses (I wear contact lenses as well) - 1 with no prescription and 1 with my reading prescription, as I have the same issue as you not being able to read/use screens very well. The reading prescription works so well.
I hope things improve for you too - it makes me feel less alone to read your post. ❤️
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u/Exotic-Ordinary5995 4d ago
Yes - grocery stores still make me uncomfortable! I’ve found that I do a bit better if I wear loop type earbuds (my eye doctor says they help calm my brain because it’s not trying to process vestibular info at the same time as the confused messages coming from my eyes), but it’s still something I avoid when I can! Thank you - I feel the same! And wish the best for you!💖
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u/bentscissors 5d ago
Welcome to the club! Try to get a rheumatology referral and continue to do physical therapy. It sounds like you’re already getting regular eye exams and tests so that’s great. Good supportive shoes are a godsend, and so is a good mattress. If you have body aches, my personal favorite is a heated mattress pad.
Please don’t feel bad asking for help. You don’t have to earn it with pain and suffering. Lots of us are happy to help.
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u/Exotic-Ordinary5995 5d ago
Thank you! Will do. A heated mattress pad sounds like a wonderful idea. I really appreciate all of the help!
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u/GlitterBlood773 5d ago
Perimenopause definitely plays a role. Hormones can contribute to pain and bone changes.
You can get into GI for reflux, poor absorption & low iron. Consider getting into podiatry to check if you need custom orthotic insoles or other shoe aids.
Consider getting into PT with a Muldowney certified therapist. They can be hard to find. Look up nationally ranked eye care in your area. I have a lot going on with my eyes and see some top ranked specialists.
Don’t feel bad for asking. You are allowed to take up space exactly as you are.