Office Hours: My Essential EDS Advice

[@bendybodiespodcast]

What has your diagnostic journey been like?

[@StephanieDefinitely]

My diagnostic journey has been slowwwww. 😫 I started having chronic pain at age 9. At the time they did as many tests as they could think of but they were stumped and basically decided I had fibromyalgia and CFS/ME. This was the early ‘90s. I had neck pain, lower back pain, scoliosis, slipping ribs, knee and ankle instability… 🤔 I’m now in my mid 40s after going through chemo and early menopause which caused my body to absolutely freak out. Estrogen, how I miss you. 😢it’s made my joint issues, brain issues, heart issues, everything a thousand times worse. This summer I finally saw an internist who works with my PCP who knows a lot about EDS and she did the Beighton test on me and diagnosed me with HSD. She said she also strongly suspected I have EDS, and likely POTS and MCAS, after asking a hundred questions (it was amazing!) so she gave me a cardiology referral and suggested I also look into finding someone to look into MCAS, and said I should speak to my new rheumatologist about hypermobility.

[@KxNOxUTA]

It's in it's baby shoes and I'm already exhausted :'D All I know is, that way too many things are not OK, for most of my life, there's no easy answers aaaaand the things spoken about in this community are a) suspiciously overlapping with my experience b) the advice given is helpful and finally leads to improvements and better decision making on my end. So I do not care what labels I may or may not end up with X'D I'm here because it already leads to more results than and attempts at diagnostic approaches this far. c) I'm learning of all the things I thought were "normal" as "wait, that's not a common thing?" and the language to event go to my GP and say "I experience xyz, turns out that's sth. that might need medical attention" and I see by the way his eyes are growing big, that these were things that people would have usually looong brought up. But how was I supposed to know? I've never known another way of being 🥲 So thank you for helping us with the process of actually ..... recognizing what struggles and support needs I'm having in my .... overly full basket //////orz//////

[@bendybodiespodcast]

@@StephanieDefinitely Have you found a helpful healthcare professional along the way at all?

[@bendybodiespodcast]

@@KxNOxUTA I am so glad the podcast has been helpful for you. Do you have a favorite episode?

[@lisabreton9236]

Thank you, very helpful!

[@bendybodiespodcast]

Thank you for your kind feedback. Do you have questions you'd like to hear addressed on a future episode?

[@lisabreton9236]

@@bendybodiespodcast Not that I can think of in particular.

[@KxNOxUTA]

Heck, when you listed the questions for surgeons I understood just how very lucky I had been thus far turning the wrong person down and getting the right person instead, even with complications. Also mini mini surgery of a scar section after said surgeries on Monday and I already know I must ask about what they base their sutures + suture technique decision on, in my case. All these questions must go into some sheet or doc in some cloud. For everyone to print out n customize for themselves if necessary 🤩

[@bendybodiespodcast]

Great idea. I will see what I can do about that so please continue to follow the podcast.

[@KxNOxUTA]

@@bendybodiespodcast Thank youuu❣ Also yaay, survived my mini surgery. So far so good.

[@ainemaeve]

Thank you 🙏🌻💜

[@bendybodiespodcast]

You are most welcome. What part was most helpful?

[@bushisaac06]

Softwave Therapy for your friend's shoulder?

[@bendybodiespodcast]

Software therapy???

[@bushisaac06]

No error Softwave therapy. I have been doing sessions of it. Also experimenting with peptides such as BPC-157 and class iv laser therapy. I was diagnosed about 2 years ago at 33-34 yrs old.

[@bendybodiespodcast]

@@bushisaac06 thank you for that. I totally misread what you said. I would love to hear more about your experience with Softwave, BPC-157, and class iv laser. I looked up Softwave and am very interested in modalities like this. Unfortunately due to the placebo effect and other challenges, it is very difficult to get quality data to determine true efficacy for therapies like this. Any info is much appreciated. Thank you!

[@bushisaac06]

@@bendybodiespodcast it has definitely improved my quality of life so far. Softwave has 26 or more patents and is used by major sports teams as well as wealthier people. They have done studies all around the world on its benefits! Peptides seem to help a lot as well but haven't completed my first months regimen yet. Can tell you more if interested but maybe later before I respond. I'm about to go into my PCP appt. Reflexology has also helped with adhesions in my fascia.