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Loeys-Dietz & fibromyalgia

Apr 19, 2018 5:47 AM

Hi All

I see quite a few fibromyalgia sufferers and at least 1 person who has Loeys Dietz Syndrome. I was diagnosed with fibromyalgia in my early 20’s by my General Practitioner, who told me to try herbalism to reduce the everyday issues you get with it. Herbalism didn’t work for me, and it was only in my 30’s that my new GP recommended Pregabalin, after I’d lost sensation in my left leg, fingertips and nose! He started me on 75mg/daily and I’m currently on the full dose of 600mg a day, which works well for the strange pains and sensations and loss of sensation in my extremities too. It’s still not got a full handle on my vertigo symptoms, but at least being able to put my foot on the ground is a plus!

A few years ago I was diagnosed by my geneticist with Loeys Dietz syndrome, with a rare (even for a rare disease) mutation in the TGFBR1 c.1072C>T gene. While the diagnosis gave me a reason for why my joints are so lax, because it’s a relatively rare disease, no one knows exactly how to treat it. Rheumatology said they can’t do anything for me, neurology said similar and cardiology see me as something to be prodded and probed for their amusement!

In any case, I found out that I have a dilated aortic root/arch which needs surgery this year, which will allow me to actually get some exercise for a change! It wont fix my pain, and it won’t fix my hyper mobility, but it’s one less thins to have to deal with on a day to day basis.

With the LDS, it’s difficult keeping my joints all lined up correctly, and it takes an enormous amount of effort to do the simplest of tasks. I don’t know which is worse, the fibromyalgia or the LDS for pain. I know the EDS sufferers can empathise but do any of you guys have fibromyalgia and EDS and if so how do you cope with it everyday?


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