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Hypermobility and me

Blog entry posted by Dainty, Aug 2, 2012.

Since several people have mentioned EDS and hypermobility I thought I'd share my experience with that in case it's helpful for those considering the treatment I'm doing.

I have several hypermobile joints that sometimes quite painfully slide out of alignment. I have not been officially diagnosed with EDS or even investigated that avenue. I did not have any hypermobility prior to onset of illness.

That last point is important to me, because as I gymnast I was extremely familiar with precisely how far each of my major joints would stretch. For years I went through an entire sports stretchout 1-3 times a day, and was always aiming to increase my flexibility. I distinctly remember another girl on my team had elbows that would hyperextend and a few times I tried to make mine do the same in a mirror, but could not.

Within the first year of becoming severe (after 3 1/2 years of being a "mild" case) at one point my elbow felt like it was out of joint, so I looked in the mirror and was stunned to see that both my elbows were hyperextended without any effort on my part.

The full rundown of my EDS/hypermobile symptoms is:
  • Elbows hyperextend
  • Knees occasionally hyperextend, when they do so walking or standing is painful on the affected leg
  • Hips hyperextend if I stretch them out too much in the wrong way, can painfully "pop out"
  • Shoulders partially dislocate from lying on my sides too much at times, which is very painful. When it takes place on both sides then I have no choice but to sleep on my back.
None of these things happened prior to my severe onset. Again, due to how thoroughly I stretched out my body I would have noticed it if they had. These symptoms have persisted for the past 6 1/2 years.

Since I now know that most or possibly even all my issues are being caused by structural problems - many dating back to formation in the womb - I'm developing a hypothesis pertaining to my hypermobility. It goes like this: my health collapsed when my body could no longer compensate for the strain that such extensive structural issues eventually placed on every organ and system of my body, interfering with their proper function. Thus my body intentionally created a hypermobile environment so as to facilitate structural correction, because the structural problems were standing in the way of my body's natural healing process.

If I'm right, then there should be a tipping point during this reconstructing process at which time my hypermobility disappears once more, its purpose no longer needed.

But I'm not a doctor - what do I know, right? ;)
Dainty

About the Author

Dainty became ill as a teenager and spent 7 years mostly bedridden from ME/CFS, life-threatening MCS reactions, extreme food allergies/sensitivities, cognitive impairment, fibromyalgia, episodes of temporary paralysis and various unexplained emergencies. The past couple years she has experienced profound improvement from various treatment approaches. She's now tackling independence and continues to pursue healing full time.
  1. Dainty
    BEG, the first time I was evaluated it was by a regular osteopath, and the only problem she found was that my hips were slightly tilted. Since that didn't sound particularly problematic to anyone in the room, myself included, that area of my health was overlooked.

    The first *cranial* osteopath I saw found more issues than she could be bothered to name...when I asked for specifics she quickly scribbled down over a dozen separate problems and only stopped because we were already out of time. So if you know you have one thing, IMO it's worth being properly evaluated by a good cranial osteo, as their touch is more sensitive to find the more subtle problems. Lots of subtle problems = big problem, to say nothing of any more obvious stuff thrown in there like your scoliosis.

    I tried writing out an overview of my own issues but they're too lengthy for this comment box. ;) Some of my recent posts touch on a few of them, if you want ot look that up. If ou do, one hting to note is that all this stuff felt "normal" to me, until I began treatment and discovered that "normal" is a lot nicer than what I've been getting by with. So my thought is basically if you know you have a few structural problems, it's worth a proper investigation.
  2. Gavman
    Have you had a hair mineral analysis done? How are your calcium levels? I'd mostly be looking towards that but then im somewhat clueless, mostly with hypermobile people, weight-bearing is an effective maintenance - so things like warrior pose with knees bent yoga wise, roman chairs(sitting against a wall), bike riding (doubtful with cfs), holding a pushup position or plank. But it depends on your energy.
  3. Gavman
    The thing that sucks with hypermobility and cfs is - its hard to strengthen your joints when you have cfs. Im quite the opposite of hypermobile so i take collagen.
  4. Sushi
    Dainty, I remember that as a child, my skirts always rotated around my waist and looking back, this probably means that my pelvis was tilted at least from early childhood.
  5. BEG
    Hi Dainty, Can you elaborate on your structural problems? I recently learned that I have slight scoliosis which my mother told me 40+ years after learning about it. I'm also hypermobile. You bring up many intriguing questions in your hypothesis. Do we become hypermobile to compensate for defects?
  6. Dainty
    Warrior, Always nice to have resources handy, thanks. :)

    Sushi, I have heard that hypermobility is usually something a person has always had, but my question there is - do they have any structural problems dating back to formation in the womb and/or too early to notice that they weren't hypermobile? Because if the body was overwhelmed by structrual issues from the very start then my hypothesis would hold. The only way to know if a person has structrual problems would be to have a cranial osteopath examine them.

    And just for the record...my osteo doesn't find major problems in all his patients, just the ones who actually have them. ;) I know of three other people who have gone to him on my recommendation, one needed only the work of that first appointment to correct re-occurring pneumonia (3X), another didn't have any structural problems despite an extensive history of injuries (they all healed very well, apparently) and another has begun seeing him once a month for mild but stubborn issues, yet noted a significant change even before the second appointment. So he isn't some therapist who's trying to get people to keep coming in; he's a Doctor, fully licensed to practice medicine, who does his best to work himself out of a job. :)
  7. Sushi
    Very interesting! Let's see what happens. On the other side of it, I was always hypermobile and haven't noticed a change in that. I empathize with the pain of things slipping out of place--it is difficult. Keep us posted!
  8. warriorseekspeace
    Hi, Dainty. Thanks again for sharing your experience and thoughts.
    I just wanted to add a few links I've saved, as I've been very interested in these topics.
    You probably are familiar with them, but I thought I'd post them for anyone searching on the topic of hypermobility.
    http://www.research1st.com/2011/10/31/joint-hypermobility-and-cfs/
    http://www.cfids.org/pdf/joint-hypermobility-guide.pdf Lay guide for friends and family, by Dr. Pocinki
    http://www.ncbi.nlm.nih.gov/pubmed/10518084, on orthostatic intolerance in ED
    http://www.research1st.com/2012/06/13/rowe-riww/ on Peter Rowe's new research into neural tension issues in PWC