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:
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.
- 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.
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?
50 experts and 171 advocates oppose the HHS/IOM Contract to re-define ME/CFS.
Check out our IOM Contract Forum for the latest news and to join the campaign.
Demonstrations in San Francisco Dec 9th and Washington D.C. Dec 10th
Hypermobility and me
Blog entry posted by Dainty, Aug 2, 2012.
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.