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Has anyone been diagnosed with Ehler’s-Danlos Syndrome (EDS)?

Posted by sue15 @sue15, Mar 2 8:27pm

EDS is genetic and I am a 66 female diagnosed with it after 5 years of pain, weakened muscles, and loss of Collagen across my body. My afraid for the long term outlook. I’m on Naltrexone recently that really helps with the pain in addition to my other meds. Would love to discuss with other EDS patients.

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karmgreen | @karmgreen | 6 days ago

Hi. I’n currently in the process of trying to access a rheumatologist for an hEDS diagnosis, which should hopefully happen by the end of this year

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sue15 | @sue15 | 5 days ago

Karmgreene.
I am a 67 woman and had symptoms start January 1, 2026. I had only been diagnosed with Central Sensitization. I knew there was more.
More and more
Symptoms. I got a rheumatology,
Pain special,
Counselor,
Neurosurgeon, GP. And, found a great pain Eds doctor who put me on low dose Naltrexone and which helped dramatically; no side effects, not too expensive.
I use Volatran on my hands,
Lidocaine cream off the shelf and Lidocaine Prescription 5% Patches which helped dramatically to function if pain is bad. I also have cannibis cream which works. The rheumatologist did not really help me even though I like her. The Chronic Pain and EDS Doctor helped the most. I still have flareups. But a lot of my pain is gone!!!

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karmgreen | @karmgreen | 5 days ago
In reply to @sue15 "Karmgreene. I am a 67 woman and had symptoms start January 1, 2026. I had only..." + (show)
Profile picture for sue15 @sue15

Karmgreene.
I am a 67 woman and had symptoms start January 1, 2026. I had only been diagnosed with Central Sensitization. I knew there was more.
More and more
Symptoms. I got a rheumatology,
Pain special,
Counselor,
Neurosurgeon, GP. And, found a great pain Eds doctor who put me on low dose Naltrexone and which helped dramatically; no side effects, not too expensive.
I use Volatran on my hands,
Lidocaine cream off the shelf and Lidocaine Prescription 5% Patches which helped dramatically to function if pain is bad. I also have cannibis cream which works. The rheumatologist did not really help me even though I like her. The Chronic Pain and EDS Doctor helped the most. I still have flareups. But a lot of my pain is gone!!!

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@sue15
That’s great you’ve gotten help and are no longer in as much pain!

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