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Newly Diagnosed with Hypermobile EDS - Seeking Tips and Resources

Wanderinglumos

538d

Hi! So today I officially got diagnosed with Hypermobile EDS and while I’m glad to have answers it feels a bit overwhelming as well. Would love any tips/resources for a newly diagnosed person. Thanks☺️

9

25

25

Naltrexone

Ehlers-Danlos Syndrome (EDS)

Morphine

Chest pain

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Top reply
    • colourfulburrito

      504d

      Congratulations! I don't have the money to go private and I'm on the NHS waiting list and currently sitting at 7 years to see a rhumetologist

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      Chat
    • colourfulburrito

      504d

      Congratulations! I don't have the money to go private and I'm on the NHS waiting list and currently sitting at 7 years to see a rhumetologist

      1

      Reply
    • EDS4Life

      504d

      The diagnostic process is the worst. I feel you. It's overwhelming. Especially when Noone in your life understands. I don't have a lot of tips because I'm recently diagnosed myself but just know you're not alone!

      1

      Reply
    • Mickey1210

      521d

      Have printouts of info on eds for doctors. Also look up physical therapy exercises and have braces for the joints that give you the most issues but only use as needed. Also if you aren’t allergic KT tape is a great resource

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      Reply
    • EDSdancer

      536d

      I was diagnosed this March, and the pain specialist that diagnosed me put me on low dose naltrexone. It’s for addiction, but a low dose can help with pain management

      1

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      • ChronicIllnessBabe

        524d

        @EDSdancer did you find that the LDN helped you? I’ve been on it two months and it hasn’t seem to do much for me yet other than put a big dent in my wallet 😭 I’ve tried *every drug* the neuro and rheum can throw at me and this is my last effort before opioids or morphine is going to be talked about.

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        • EDSdancer

          521d

          @ChronicIllnessBabe I thought it wasn’t helping, but then I ran out and my pain got worse. So I guess it does help me I just didn’t notice

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    • whicheveroneiam

      538d

      Oh I just remembered this too! ehlers danlos makes you more resistant to local anesthetics so if you get any dentist work done or need stitches or anything let the doctor or dentist know cause they’ll probably have to use a LOT.

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      • SuccinctAbilities

        537d

        @whicheveroneiam Absolutely this! Most dentists I’ve been to just use laughing gas, and that has never done anything for me. Once I figured out I likely had EDS, I let them know to use injected anaesthetics (and to keep a close eye on the levels) my procedures went so much better! Even the stronger stuff needed re-upping once, but it is possible to find a level that will work for your body. I had ruled out being comfortable during procedures before learning about EDS anaesthetic resistance, but it just takes a little extra communication 👌

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      • Wanderinglumos

        538d

        @whicheveroneiam I have noticed this! They would have to use a lottt of injections to even give me a filling. I always wondered why it never worked well for me.

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      • AeL

        538d

        @whicheveroneiam This! For me local anesthetics wear off after a couple minutes. I don’t even let them try to use it anymore, it’s useless. Injectable anesthetic works a lot better for me. I had a skin biopsy with it and felt nothing for hours.

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    • AeL

      538d

      My main thing would to make sure every doctor you see, whether PCP or specialist has at least some understanding of EDS. Something like GI or Rheum or Surgeon needing more knowledge than like Dermatology Figure out what your biggest EDS problems are find solutions now that you know the cause. For me a major issue was that I had bad issues with my feet my entire life, when I got my EDS diagnosis I went to a podiatrist who specializes in EDS- my Ritchie Braces have changed my walking game completely. There is no medication or treatment, but little changes or different mobility aids can make an enormous impact in your quality of life now that you know what the issue is

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      • Wanderinglumos

        538d

        @AeL thank you!! It’s a great idea to find doctors knowledgeable with it since it affects so many things. My geneticist recommended seeing an orthopedic for my neck and shoulder pain so I’m hoping to find one who understands it all!

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      • whicheveroneiam

        538d

        @AeL I’ve never heard of it seen a Ritchie Brace before and oh my god. I need to get some right away. Did you get them through a doctors office or just online somewhere?

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        • whicheveroneiam

          538d

          @whicheveroneiam sorry I mean like did a doctor have to order them or size them at all for you?

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    • whicheveroneiam

      538d

      Everyone will tell you to try yoga, you might have people who have already been telling you this for a lot of other reasons, but don’t. Yoga is actually not good for people with hEDS bc it is so focused of the flexibility of your body, it’s way too easy to overdo a pose and end up causing more harm than not. If you are an exercise person or looking to get into something Pilates is actually fantastic for hEDS bc its all about strength building in practical ways- especially building muscle around joints.

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      • whicheveroneiam

        538d

        @whicheveroneiam also, if you haven’t already hEDS can get you a handicapped parking placard- I would really recommend getting one

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        • EDSdancer

          507d

          @whicheveroneiam how do you go about this?

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        • Mira.P.Takki

          521d

          @whicheveroneiam this is fascinating. Never considered that this might be the case. Thanks for sharing this!!

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        • Wanderinglumos

          538d

          @whicheveroneiam thanks for the recommendations! I have been told to try yoga but have in the past and it’s been really uncomfortable. I need to find a way to exercise but am worried about my POTS too so hopefully I can try some and find what’s best! I haven’t looked into Pilates but I will! Thanks!

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    • Kellybelly

      538d

      I know how overwhelming it is must be a little sense of relief. I was diagnosed back in August. Did the doctor put you on any medication to help? On my good days I try to take walks so I don’t get too stiff. Don’t overdue it though know when it’s ok to relax.

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      • Wanderinglumos

        538d

        @Kellybelly no medications. I saw a geneticist and she said she just diagnoses and doesn’t treat unfortunately. Only recommended finding a PCP who is understanding and can help me find a team to help. She did send a letter to my PCP with some suggestions and information though so I’ll meet with him to talk about it more.

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        • Kellybelly

          538d

          @Wanderinglumos I hope you can find a good team of doctors. I was diagnosed by a cardiologist who was testing me for POTS but they specialize in that. They were able to give me medicine because my ribs have been giving me a hard time over the last 6 months and my legs give out all the time. I am sure you will find someone good. I was misdiagnosed with so much stuff before getting this diagnosis so it is a such a relief.

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☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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