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Magpie42

742d

Hi there, I have hEDS and most of it's comorbidities. just trying to find a space to discuss new research and management options.

Top reply
    • graytail

      738d

      I have hEDS, POTS, depression, anxiety, PTSD, asthma, PCOS - high estrogen low progesterone type, and celiac disease. I get migraines, they're related to my hormone problems. Getting surgery on my uterus and an IUD in June, hoping for the best. My PT has really helped me even through injuries. I love CBD and I hope it gets legalized everywhere. My Lexapro is doing great. I was on Cymbalta a long time but it started to raise my blood pressure! Glad to be doing better now but it's a day by day thing and sometimes I don't have energy to do much.

    • graytail

      738d

      I have hEDS, POTS, depression, anxiety, PTSD, asthma, PCOS - high estrogen low progesterone type, and celiac disease. I get migraines, they're related to my hormone problems. Getting surgery on my uterus and an IUD in June, hoping for the best. My PT has really helped me even through injuries. I love CBD and I hope it gets legalized everywhere. My Lexapro is doing great. I was on Cymbalta a long time but it started to raise my blood pressure! Glad to be doing better now but it's a day by day thing and sometimes I don't have energy to do much.

    • justkittenya

      738d

      Have you looked at the book “Understanding Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder”? It has so much information packed in. Also the book “Transforming Elhers Danlos Syndrome”. Any work by Dr. Claud Hamonet. Most all of this is based in Europe, but dang I feel like they are ahead of us on this. I have such high hopes for the work being done at MUSC with Courtney Gensenee (cortdoesscience on IG).

    • justkittenya

      739d

      Same. I need to add the rest of my comorbities in, but it’s a high pain day. I’m new to this app. I’m not sure how to find a group.

    • Magpie42

      740d

      Oh gosh, that's hard. Really hard. Mast Cell issues are really my easiest symptoms so I don't have a lot of knowledge about how to treat them. Have you discussed with any of your team the genetic testing they can do to see how you metabolize medications and what may work best for you? That's all I can really think of. Sometimes I wish we could just live in bubbles because it would be easier in completely controlled environments. I'm sure you are but I will mention it, are you journaling? Something as simple as a google doc with pics of skin reactions, times, what you've eaten, weather, etc? It is an enormous pain in the arse but maybe it could narrow if you haven't already done it? GI issues are the worst, hands down. I would rather deal with reynauds flares, my heart issues, neuro, anything before GI stuff. Because when it hits, IT HITS. I've been hospitalized several times bc of it. No answers other than no gluten. Your MCAS docs have done both blood panels and scratch tests, yes? Tested for food allergies? I'm just trying to think of things off the top of my head. Has your home been tested for mold? That will mess us up fast. Are you moving each day? I don't mean running at the gym. Just a lap around your place once an hour. When I'm down with a really bad flare I set an alarm for it. My house is small but just making a lap once an hour keeps my blood moving and not pooling, plus it helps me keep my joints where they should be. Just some thoughts. To let you know you aren't alone. Just keep waking up and keep breathing. Hugs.

    • Bartender

      741d

      I'm still learning but so far it's been quite some trial and errors? I get so itchy and idk why? Red, flushed, rashes? Nothing has helped enough yet? And it's taken me almost a year to even get up on this medication. I used to be real active and now I can hardly do to much. So I have no idea and neither do my docs. Yes I have 2 MCAS knowledgeable docs that are trying to help.

    • Bartender

      741d

      I have EDS, MCAS, POTS, small fiber neuropathy, IBS. You name it. It's been real hard. I am on Allegra, ketotifen, and cromolyn sodium. I get migraines with H2 blockers so I am dealing with terrible GI issues. It's so awful. And have many sleep issues. I don't even know what my triggers are? It's so random and all I know if I'm allergic to any medicine or supplements I take. I usually get bad side effects or react. I do have Benadryl and epi pen. But I'm usually in so much gut pain I can't function. Been out of work for 2 years now. I have no idea how to care for myself cause it's random and triggers can be anything at anytime? Heat and humidity doesn't work for me and smells of chemicals.

    • Bartender

      741d

      I'd love to talk and hear what you have learned. I am newly diagnosed and don't know enough but I'm trying. I have most of the comorbidities also. I'd say MCAS is the toughest one I deal with. And sleep. Your not alone. Maybe some others can help too

      • Magpie42

        741d

        @Bartender hi there!! I feel like I'm pretty educated in how to care for myself and keep me functional. Do you have any specific issues other than the MCAS? MCAS is tough. First, do you have an allergist who is MCAS knowledgable? Do you have an h1 and h2 antihistamine that you take preventatively? I don't quite qualify for MCAS according to my allergist. I'm just overly allergic. I keep zantac and claritin on hand at all times. Benadryl if I'm in a situation I can sleep. I also have an epi pen and avoid triggers.

☝ 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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