• I recently met several people with XLH and was i name of the types pain that these people live with. The people I met all had tremendous bone pain due to fractures and extra bone growth in addition to the osteoarthritis and spinal stenosis pain that many people are more familiar with.

    fascinated to learn that there are so many different names for…[Read more]

  • I think we are all always looking for “one more thing to try” in our search for the right mix of things to manage our pain.

    I have had to use a far infrared heating pad quite a bit lately to manage my lumbar pain. Spondylolithesis and arthrodesis have been flaring up. I think it is because I was traveling for a week recently and wasn’t as regular…[Read more]

  • Walking and distraction are great for lots of chronic health conditions. Just stumbled upon this thread and love Dreamcatcher’s Six Word Memoir idea.

    Also love, love, love that quote.

    Let’s keep moving forward and help each other along the way.

  • FredFriend replied to the topic Dizzying in the forum Migraines/Headaches 2 months, 2 weeks ago

    Circling back to comment that I’ve linked my vertigo associated with my migraines to autonomic issues.

    It is very frustrating when it happens.

    For now, regular acupuncture treatments have been helping to keep the vertigo and the migraines under control quite well.

    Plus the usual mix of sleep management, diet management, meditation, hydration…[Read more]

  • Great new resource created in the UK:

    “The Royal College of General Practitioners (RCGP) has launched an Ehlers-Danlos syndromes (EDS) toolkit for GPs and healthcare professionals. The toolkit, created in partnership with EDS UK and funded by the charity, aims to improve the recognition, response to and management of EDS in primary care.

    The…[Read more]

  • The politics around effective pain management have become more out of control lately. It is terribly unfair, nee torture, not treat people with chronic pain. Honestly, those politicians who draft and pass laws with dosing limits are practicing medicine without a license. Maybe a class action lawsuit in Ohio or West Virginia along those lines would…[Read more]

  • Hi Richard,

    Are you still active here on the website or on the phone calls?

    Welcome to The Pain Community.

    Fred Friend

  • Welcome, Johnsontic,

    Welcome to The Pain Community. Have you checked out some of the blogs and education resources? I find that it is empowering to learn more about pain and management options. It takes so much to bring the pain down to a level that I am able to get out and about or even chat online.


  • Hi Terri,
    Welcome to The Pain Community.
    It is so very isolating to live with pain that limits our ability to get out and interact socially. I find that the unpredictability of when I will be feeling up for an outing makes it a challenge to plan things.

    Like Kristy, I have found people in my community with the same condition I have that are eager…[Read more]

  • Welcome, Tiltnturn.

    The dog in your photo is gorgeous. Animals are such a great comfort. I have found that pets are a great distraction from whatever is going on with my pain issues.


  • Welcome, Guit30. That is great that you have figured out a way to work with a different pharmacy in order to get the prescriptions you need to manage your back pain. I understand the need for a fully customized pain management program implemented with one’s own doctor to manage Scoliosis, cervical stenosis, spinal stenosis, sciatica, bulging…[Read more]

  • Kimmi, Your words are encouraging and give hope. Thank you for sharing your story and your perspective.

  • Angele334, I am so sorry that you find yourself in a difficult position. Education, awareness and support from outside of the family may be helpful. About 18 months after I married, I sent a one page letter to […]

  • Welcome ToebeanS!
    I hope that you look around the site and explore all of the great resources, references and blogs that are housed here. It is an amazingly supportive and informative group.
    Hope to run into you again here soon.

  • Welcome Snow,

    I too have Hypermobility Type Ehlers-Danlos syndrome.

    Finding the joy in each moment and my mantra “Keep moving forward” are at the top of my list of how to cope with the torturous pain. In some ways aging has made it worse and in others I think aging makes it better.

    As I age (I’m over 50) I’m less fearful and less guarded so the…[Read more]

  • BD,
    I’ve enjoyed your updates from the dock and am sorry to learn that the dock drama sucked you in such that you are suffering for it. I think you are coping beautifully and adapting to the changes around you as well as within yourself.

    Living for Right Now is the thing that so many proponents of meditation and CBT are extolling as the primary…[Read more]

  • Hello MDMC and welcome to the discussions. Sounds like you have a good plan going. I include DARK chocolate in my pain management toolbox because of the many health benefits. A square or too in the late morning and/or early afternoon is a great way to inject a few moments of pleasure to distract from the pain. It is believed to be a natural…[Read more]

  • I find that communication with my partner is key to heading off misunderstandings. I fight to overcome my tendency to go quiet when in pain AND when something is bothering me. A few years ago we scheduled a sit down meeting to come up with mutually agreeable “rules of engagement” around things that bug us. A big thing was that when I “hermitized”…[Read more]

  • For some, meditation is spiritual. For others it is a tool to bring focus.

    I find that meditation gives me a chance to slow down and clear my mind. Afterwards I’m able to appreciate the connections I have to other people, nature and the world. I think of it as a spiritual connection because it is an intangible that I believe really exists.

    Do…[Read more]

  • I agree, Noki. It is almost like we are trying to get away from the pain that is chasing us. As long as we are moving forward we keep it at bay. As soon as we stop (by choice or not) that stiffness and pain sets in making it more difficult to get back in front of it.
    Happy walking!

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