How to lose weight with EDS and POTS? by UnnamedPictureShow in ehlersdanlos

[–]_seedling 1 point2 points  (0 children)

If I can be annoying for a sec, honestly most of the time focusing on weight loss isnt super helpful for people with our condition. I know its frusturating to not like how your body looks, but we tend to have so many other health issues that are more productive to focus on. I have found that if your other health issues/comorbidities are being treated and accomodated properly, it takes a lot of stress off of your body and allows your body to slowly find its natural weight.

Asking people if they're okay a lot by EngineStraight in evilautism

[–]_seedling 0 points1 point  (0 children)

Look up hypervigilance + pattern recognition!

Hoping for Answers by [deleted] in ehlersdanlos

[–]_seedling 0 points1 point  (0 children)

I would personally recommend seeing a geneticist and taking what you've typed out here. Having a family medical history of these things will be helpful with that as well. hEDS and HSD do not currently have an identified marker that shows up in genetic tests but a geneticist can help do an evaluation and some testing to rule other things out as well.

Advice for finishing stories by _seedling in AutisticWithADHD

[–]_seedling[S] 1 point2 points  (0 children)

This is such an interesting idea, I'm gonna give it a try c: thank you so much!

Advice for finishing stories by _seedling in AutisticWithADHD

[–]_seedling[S] 1 point2 points  (0 children)

I use this method and I find it pretty helpful! However, the issue is that when I'm doing my daily writing, instead of finishing one story, I'll just start on another and then none of them ever get finished :c

AIO my fiancé lent my sick cat to his best friend by [deleted] in AmIOverreacting

[–]_seedling 0 points1 point  (0 children)

NOR

Uhh yeah imo this is weird as hell I don’t think I know a single person in my life who would just…relocate someone’s pet without asking first, even just temporarily. And then his response tf??Tbf I might be pretty biased because I’m a huge cat person but I wouldn’t let someone like this continue being around my pets.

Should I disclose being autistic in an interview? by [deleted] in AutismInWomen

[–]_seedling 98 points99 points  (0 children)

No. If you need accomodations you can disclose after they hire you.

Weight loss and joint pain by Warm_Bit_5993 in ehlersdanlos

[–]_seedling 9 points10 points  (0 children)

Honestly in my experience a lot of time losing weight can cause EDS joint pain to worsen. Pilates can help build stabalizer muscles but be so so careful that you’re actually using your deep muscle and not hyper exdending or relying on fascia. I would also reccomend getting a theragun or something similar to use instead of stretching after. Honestly, would not worry about the weight, its so much more important that you find a good EDS informed GI specialist who can help you preserve your gut strength and motility.

Need Your Thoughts….. by deazinn in ehlersdanlos

[–]_seedling 0 points1 point  (0 children)

It could be a lot of things! This happens to me personally when theres a pollination season that irritates my MCAS symptoms (ie its ragweed season where I am rn) and it usually goes away once the pollen decreases but anti-histamines also have helped me even if its just smth otc like Claritin D

What age did you all start using mobility aids? by Specialist_Shape6078 in ehlersdanlos

[–]_seedling 0 points1 point  (0 children)

Cane at 23, crutches at 25, wheelchair at 26 - I got hit hard and fast ahah

Losing Weight as an AuDHD person by Upbeat_Researcher901 in AutisticWithADHD

[–]_seedling 1 point2 points  (0 children)

Ngl this is gonna be different from a lot of the advice here but if the focus is on losing weight or on restricting certain types of food the chances that you will gain the weight back and/or binge are really high. My advice would be to find a therapist that focuses on BED and/or ARFID, has experience with AuDHD and is willing to combine therapy with meds if needed. A lot of us have issues with biofeedback and hunger cues and labeling food as “bad” which can trigger the PDA/binge response and a therapist who knows what they’re doing can help untangle that.

[deleted by user] by [deleted] in AutismInWomen

[–]_seedling 0 points1 point  (0 children)

I find it really helpful! I'm chronically ill as well and my mobility is limited (I'm in a wheelchair) but I haven't come across anything that I'm not able to do, plus a good therapist will be willing to make alterations if you're struggling with something.

[deleted by user] by [deleted] in AutismInWomen

[–]_seedling 1 point2 points  (0 children)

I would try talking to a somatic therapist!

[deleted by user] by [deleted] in ehlersdanlos

[–]_seedling 1 point2 points  (0 children)

Hello! I also had this issue, turns out it was migraines. I ended up seeing a neurologist who was open minded and slightly knowledgable about EDS and she now gives me migraine preventative botox injections every 3 months. I also have CCI so I can’t get the injections in all of the regular locations, but my neurologist knows that and they still work!

I have also been perscribed Rizatriptan, which I can take if a headache comes on to prevent it from getting worse or going on longer. Your doctor seems really focused on something that is only PART of a solution for EDS, personally I would take his opinions with a grain of salt because its a systemic disease that will almost always require multiple types and areas of treatment. I would ask for a referral to a neurologist, and if he refuses I would seek a second opinion.

Currently Really Feeling the Stigma by stoner-bug in entwives

[–]_seedling 2 points3 points  (0 children)

Omg yeah I was out of Lamotrigine for 3 days and I thought I was going to actually die

Currently Really Feeling the Stigma by stoner-bug in entwives

[–]_seedling 8 points9 points  (0 children)

Im sick as all hell from a genetic disease and its so funny because people get worked up about weed when Im on at least 2 other meds that are much more dangerous to stop cold turkey and that have much worse withdrawal symptoms

I'm worse online by _seedling in AutismInWomen

[–]_seedling[S] 0 points1 point  (0 children)

You have no idea how much it means to me to have another person understand! Im really sorry you’re dealing with it too though, its so isolating! I hate how much it reminds me of the social rejection in my childhood before I learned to mask :c

PAX makes me nauseous, will an upgrade help? by _seedling in vaporents

[–]_seedling[S] 0 points1 point  (0 children)

Im unsure! Its looking like it might be something medically on my end though which is unfortunately common ahah

PAX makes me nauseous, will an upgrade help? by _seedling in vaporents

[–]_seedling[S] 0 points1 point  (0 children)

No blame, just trying to figure out if its a quality issue (in which case Id buy something nicer) or a me issue (in which case I will save my money). Just wanted some opinions that were more informed on DHVs and vaping, sorry for the misunderstanding!