Hello there, ran across your blog while I was looking for other WordPress blogs that deal with fibromyalgia and myofascial pain, and I couldn’t help but notice the wonky rib post, and combined with POTS and migraines and some of your other mysterious joint pain symptoms it makes me think “dang, has this girl been evaluated for ehlers-danlos syndrome? Might be the common thread that explains all her symptoms!” Not trying to be nosy, just couldn’t resist mentioning it in case it could be the missing piece of the puzzle in your case. Best of luck to you and keep up the good blogging work! May I follow your blog so other patients who read my website can see yours as a resource for moral support? I think it’s important to develop a community of other bloggers with similar issues so patients don’t feel so isolated. I’m not a stalker, I promise, just a concerned fibromyalgia and ehlers-danlos specialist who’s working to stamp out pain wherever possible, and I’m a spoonie myself, so that should buy me some positive points too 🙂 Cheers! – Medea
I haven’t been evaluated for Ehler’s-Danlos, but I’ve looked up a lot about it. I actually am pretty sure that is what a classmate and her brother had from high school (she told me, but I can’t remember if this is what she said… But it fits all the symptoms they had). I keep wondering, but I don’t fit a few that seem key, but I’ve been during enough I’m going to ask about it… Thank you for noticing!
And yes, please follow! I started the blog to hopefully help people like me, actually! It’s therapeutic for me to write, but I also remember how alone and depressing a lot of what I was finding during my own research was, and I wanted to give people a resource that was more upbeat and real. 🙂 I definitely agree that community is important, especially for us spoonies!
Ok thanks for permission to follow your blog, snippets of yours will occasionally get run across my sidebar of the blogs I follow so hopefully it will bring you new readers 🙂 I can’t give medical advice since you’re not my patient but I would definitely recommend having a consult with a genetics specialist who’s familiar with EDS at some point. We have a connective tissue disorder department here at UW and I’m sure they have something similar where you live. Might explain all of your symptoms, and the untreated joint and tendon pain over the years can lead to fibro symptoms. I’m planning to write a blog post on the connection eventually – I’ll let you know when I do – I find that 80% of my fibro patients actually have EDS as the main cause of their symptoms. EDS leads to painful joints/ligaments/tendons, which leads to myofascial trigger points, which leads to poor sleep, which leads to fibro. Sometimes once the joint pain is treated and sleep is fixed the fibro symptoms go away 🙂 My series of blog posts on fibro vs myofascial pain syndrome sum it up in laypersons terms. https://medeakarrarnp.wordpress.com/2015/05/24/fibromyalgia-myofascial-pain-syndrome-part-1/ Hope that helps! Medea
Great! Thank you! I look forward to that post! And I’ll have to read more about EDS, read your articles, and then go talk to my doctors!
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