Some of you remember me from a couple of years ago. My personal diary https://mvertigo.org/t/musings-and-sometimes-funny-stories/17828 spent a lot of time talking about loose joints, arthritis and the like. After about 300 physical therapy visits, about the same chiropractor, MRI, X-rays, ultrasounds, etc. and, crucially, one totally unprovoked, wickedly painful dislocated shoulder, I’ve finally been diagnosed with Hypermobility Spectrum Disorder or Elhers-Danlos Syndrome. I could figure out which if I was keen on doing a bunch of expensive genetic testing and could get the specialist at the University of Washington Medicine to agree to see me (mostly that second one).
I started noticing a big overlap between MAV and EDS/HSD (as opposed to ETS - Eustachian Tube Disfunction which I also have and is currently annoying me with underwater sounds). So, anyway I found an article about the connection and how often it is undiagnosed. Thought you all might be interested.
Ehlers Danlos Migraine - Ehlers Danlos Awareness
Very interesting article!
Do you know how this diagnosis is changing your treatment options or is that still in the process of being figured out?
I don’t know yet. It took me five full years to get the diagnosis. I have a new orthopedic doctor, a new rheumatologist and yet another new PT. I already had each of those things but the treatment options just shifted. I’ll come back and let you know. I can say all manner of my numerous health oddities now make sense.
I was diagnosed with Joint Hypermobility Syndrome (JHS) about 7 years ago, along with Fibromyalgia. Previously I was sent for tests re EDS, but was advised I don’t have this.
I also suffer with Eustachian Tube Dysfunction, which is driving me nuts at the moment… I think due to starting HRT, for the menopause.
I was diagnosed with Vestibular Migraines just over a year ago, with vertigo episodes and constant “at sea” feeling; it looks like my VM was kicked off by the menopause.
Since starting the HRT my VM has gotten better, vertigo attacks one or two times a month rather than at least once a week, plus some days I almost feel “normal” (god I love those days).
Because I need the HRT to help alleviate menopause symptoms, and VM it seems, I’ve been looking into why my ETD & anxiety has gone nuts… it looks like I’m Histamine Intolerant.
This makes sense (I was diagnosed with oesophageal reflux, post nasal drip and non-allergic rhinitis decades ago), my body needs the oestrogen but also doesn’t like it, as it makes me produce even more histamine and I’m already overflowing with it.
To test this I’ve stopped eating things I know to be full of histamine (like tomatoes) and I’m taking antihistamines twice a day, along with natural antihistamines (VitC 200mg 4x a day) and eating apples which help to disperse the histamine faster.
So far it’s working, except days like today, when I’ve just put a new oestrogen patch on and I think my body has produced some too… so histamine overload to the max again.
Hope some of that helps others, I’ve spent what seems like years self diagnosing as my GPs and specialists only seem to look at the obvious, not putting all the diagnosis’ together.
I’ve done menopause but without HRT. Hysterectomy kicked off the whole mess I’m in now.
The histamine connection I do think is key.
I guess my big question is how do you deal with the pain and joint instability? Long years of loose joints, excessive scar tissue, wear and tear mean I have arthritis, stenosis, bone spurs, edema, bursitis, tendinitis and bone remodeling in close to two dozen joints. Pain and disability are constant. I won’t do analgesics because no one would choose to go through medication overuse headache withdrawal twice. I’m immune to anesthetics. Cortisone helps short term but ultimately damages the already terrible connective tissue. What do you do? Do you have a specialist?
I didn’t see a rheumatologist for years, was just told to see my GP.
Pushed to see a rheumatologist again as my hands have lost strength, hurt most of the time and have lost mobility (they’re no longer Hypermobile).
Saw the head honcho and he ordered x-rays of hands & feet, bloods and an MRI for my hands.
Still waiting on the MRI (next week) and a referral to IPASS (pain clinic), I’m on the waiting list.
I live on paracetamol and brufen retard (slow release ibuprofen)… most other painkillers make me sick or really hurt my stomach.
My go to, since I can’t do the over the counter meds, is cannabis. It’s legal here. CBD for the day so I can work. THC at night for sleeping. I’m never out of pain but often it’s just annoying rather than disabling. And over the years my pain threshold has increased quite a bit.
I’ve been to a pain clinic. While I wasn’t impressed with the particular practice, I have considered trying that route again. Two years ago I underwent a series of platelets rich plasma injections in my hips, pelvis and spine to mixed results. I’m also taking hydroxychloroquine from my rheumatologist. That drug turns the burning down from searing to simmer. My joints are loose. The bones rub against each other to all sorts of long term effects. They don’t even hold in braces. I think returning to a pain clinic is probably inevitable.
Gosh, that is interesting - my youngest granddaughter has hypermobility and so do a couple of her cousins and I know very little about it, so thanks for posting this article. Good for you to have a definite diagnosis too.