As a physician working with patients who live with complex conditions like Ehlers-Danlos Syndromes (EDS), Hypermobility Spectrum Disorders (HSD), Mast Cell Activation Syndrome (MCAS), Postural Orthostatic Tachycardia Syndrome (POTS), and ME/CFS, I’m often asked: “What medications do you recommend most often?”
It is so interesting to read of such thoughtful & evidenced treatment.
In the UK I get no treatment for confirmed Hypermobility Spectrum Disorder as the Rheumatologist I see only looks at blood tests for Rheumatoid Arthritis & if they look OK that’s it. The daily muscle spasms, sub luxes/dislocations, pain, extreme fatigue, balance problems, spinal issues, dizziness, gastrointestinal issues, peripheral neuropathy etc are all just greeted with a shrug or a suggestion to see my GP for a different specialist referral.
Reading your column gives me hope & validation & more evidence even if I can’t get any help here but have to manage the best I can on my own.
I am so sorry that you do not have someone to help navigate this with you. Literally, that is the topic of conversation for next weeks episode of my podcast, Bendy Bodies. Have you ever listened to it? You can submit questions directly on the website.
You are most welcome and I agree. Unfortunately, repurposed generic medications are not very popular. There are no attractive reps out pedaling them and we generally are not taught this concept in school 😱🤯👀
It is so interesting to read of such thoughtful & evidenced treatment.
In the UK I get no treatment for confirmed Hypermobility Spectrum Disorder as the Rheumatologist I see only looks at blood tests for Rheumatoid Arthritis & if they look OK that’s it. The daily muscle spasms, sub luxes/dislocations, pain, extreme fatigue, balance problems, spinal issues, dizziness, gastrointestinal issues, peripheral neuropathy etc are all just greeted with a shrug or a suggestion to see my GP for a different specialist referral.
Reading your column gives me hope & validation & more evidence even if I can’t get any help here but have to manage the best I can on my own.
I am so sorry that you do not have someone to help navigate this with you. Literally, that is the topic of conversation for next weeks episode of my podcast, Bendy Bodies. Have you ever listened to it? You can submit questions directly on the website.
https://www.bendybodiespodcast.com/
It’s so crazy that after working out our own diagnoses, we also have to research medications without medical support! Thanks for this.
You are most welcome and I agree. Unfortunately, repurposed generic medications are not very popular. There are no attractive reps out pedaling them and we generally are not taught this concept in school 😱🤯👀