New Site and Update

Hi folks,

After a long debate with myself, I’ve decided to put all the information I have about my disease here on this blog. Before, it lived as a single page on my bike blog, rideblog. While that worked for a bit, I realized at some point that I needed to be able to put up posts about my illness, and I couldn’t do that to a static page so that people could get those updates. So BJHSblog was born.

For now, I’m going to leave all the info up at rideblog for a while. It’s a fun site, so check it out it if you have time. Otherwise, this is the spot to hear all about how I’m doing, and what I’m learning, about my illness: Benign Joint Hypermobility Syndrome.

For those of you who are new to this blog, the history of my diagnosis and an understanding of the disease itself are on the BJHS Basics page. Only new updates are here.

Thanks so much for visiting, and be sure to let me know if you have questions! I’ll post an update about how I’m doing soon.

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3 Comments

  1. Janet

     /  January 10, 2012

    I, too, suffer from BJHS, and no, it is not a benign condition. I was first diagnosed about 7 years ago but developed scoliosis in my late teens and suffered with back problems for years. I am now 52 years old. In the last seven years the aching joints and pain have increased. I am able to fall asleep but rarely stay asleep for long since I wake up from pain. I take a large dose of Celebrex but am now trying to work with a naturopath and anti-inflammatory diet and try to reduce meds. I do have flare ups that I think are related to hormonal changes. I have a hyper kind of personality and tend to overdue it whether physically or mentally. I used to walk a lot for exercise but have had to switch to swimming and biking since I have hypermobile feet with loads of problems. Have also experienced the issues with my feet in bed and was amused by all you are going through with the blanket supports. My husband is a terribly restless sleeper so I know he would destroy them, too. Are you willing to share your doc’s name or any other doc’s in the S. Seattle area that you have found? Thanks for starting the blog. It is good to hear from another person in the US. So much of the hypermobility info is from the UK.

    Take Care,
    Janet

    Reply
    • Hi Janet, I’m so sorry to hear you’re in pain! It’s probable that the anti-inflammatory meds won’t be very effective, as BJHS doesn’t cause much inflammation. The hyper personality is normal with this disease.

      My BJHS doc is Dr. Andrew Holman, but he isn’t taking new patients without referral. My sleep doc is Dr. DePasso at Virginia Mason.

      Reply
  2. M in London

     /  January 20, 2013

    Hello, Rideblog & Janet,

    Happy 2013 to you both and to anyone else reading this.

    I read with wry amusement your saga of living with BJHS. I am turning 53 this year and have been recently diagnosed with BJHS – all because of hormonal changes. Whodathunkit that being super flexible for the first 50 years of my life would turn around and bite me in the butt?

    Reading your blog is as though I’ve written it.

    I have bunions because the tendons & ligaments aren’t holding the bones in place so a regular bunionectomy is out. Have been told I’d need a

    Both feet have developed Plantar Fasciitis in the last 8-10 months.

    As a Canadian living in the U.K. I’d have thought, by reading what you’ve written, the care here would be better… trust me, it’s not!
    My U.K. Doc only prescribes painkillers. That’s it.

    Had extensive blood work done, (normal); MRI on hips, (normal); XRays on neck – slight start of arthritis at the C3 & C4; mild slippage at C5 & C6 – pinching nerves to hands, thus creating weakness, numbness & tingling.

    My Doc sent me to a Rheumatologist who, with a few quick flexi-tests, determined I score 5-out-of-9 on the Beighton scale. She also mentioned I have mild scoliosis – which has never been mentioned by any Doctor in 5-decades of life!

    Up until my ‘mental-pause’ started, I had no problems with crossing both legs behind my head. Unfortunately my right hip ‘popped’ in 2011 and I needed physio to put it back in place. Since then, I can only put my left leg behind my head. (Why I would want to is anyone’s guess)!!

    Yoga was a breeze and I could never figure out what the big deal about it was. Nearly all the positions were a cinch to do. (Not now, but before).

    The PAIN is really getting to be a drag with this as I get older. BJHS is described as having an imbalance in collagen. I was diagnosed in 1972 with Juvenile Morphea – an auto-immune disorder which is an over-production of collagen. BJHS is an inherited syndrome – but seeing as I’m adopted, any ‘new’ problem is a first for me.

    It would be nice to put the collagen imbalance back into check… as this could be a huge part of the syndrome. Have either of you had a problem with collagen imbalance? Considering the tendons and ligaments are all collagen-related (to a degree). As mentioned, the PAIN is the killer here. Very discouraging and taking prescription codeine shouldn’t be the only answer.

    Thanks for reading this.
    M in London

    Reply

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