I have been on the journey to recovery for more than 4 years. I have posted a few comments on this forum, but never had the courage to write about myself and ask for support. Lately I have been a bit more active on the forum and have seen so many kind and wise comments and suggestions that I felt encouraged to come out of my safe place and open up.
My diagnosis is hypermobility spectrum disorder by one rheumatologist and myofascial pain syndrome by another. My problem is back/hip/buttock pain every night. I used to have pain during the day too to a lesser degree and that is 90% cured. In fact, that got better within about 6 months of this work, I would say. The nightly pain and the resulting lack of sleep is the one that generates fear and probably that is instrumental in the fact that it is taking so much longer to resolve.
Over the course of this journey I have tried many things – I have completed an online TMS course (in the UK), then part completed Howard Schubiner’s ‘Unlearn Your Pain’ programme (part, because a lot of it overlapped the first programme I did), I have done lots of journaling, meditation, have had a few coaches and psychotherapists of different schools for short periods, have even tried Dynamic Neural Retraining (DNRS) for 8 months. At times I felt I was better (I had a glorious symptom-free 10 days last year and a week of almost no pain a year earlier) or 80-90% better, to then sink back low again to feeling like I have made very little progress. Currently I’m in the latter situation. However, mentally I am much much better than when I started. In fact, that has been a big win.
The reason why I’m writing is to ask the long termers how you keep your belief and motivation alive? As time goes on, I fall into doubt so many times and have to find ways to reassure myself with evidence lists and pain science and so on over and over. I almost think there should be a special programme for those of us who have been working on this for years. For example, short recovery stories were motivating at the beginning, but now I find them depressing. I tried restarting the online programme I had done before, but that depressed me a bit too and made me feel like a failure. What would you suggest? Should I try a different programme?
Currently I meditate daily, do breathing exercises, sometimes I journal, but not very often any longer. I seem to have run out of things to journal about. I try to catch negative thoughts and reframe them, but don’t always succeed. I am quite active during the day, except for when I’ve had a particularly bad night and I’m too tired. I have very little stress in my current life, other than the TMS symptoms themselves.
Recently, since coming on to this forum a bit more and reading the posts here I have become more motivated again, started listening to more podcasts, increased my mediation practice and have decided to start journaling regularly again. I am not sure what else I can do. Should I just keep at it and believe that the unconscious mind is changing? Any ideas? Is there anyone out there who took longer than four years to recover?
I would so appreciate any comments you may have and thank you for reading this long post.
My diagnosis is hypermobility spectrum disorder by one rheumatologist and myofascial pain syndrome by another. My problem is back/hip/buttock pain every night. I used to have pain during the day too to a lesser degree and that is 90% cured. In fact, that got better within about 6 months of this work, I would say. The nightly pain and the resulting lack of sleep is the one that generates fear and probably that is instrumental in the fact that it is taking so much longer to resolve.
Over the course of this journey I have tried many things – I have completed an online TMS course (in the UK), then part completed Howard Schubiner’s ‘Unlearn Your Pain’ programme (part, because a lot of it overlapped the first programme I did), I have done lots of journaling, meditation, have had a few coaches and psychotherapists of different schools for short periods, have even tried Dynamic Neural Retraining (DNRS) for 8 months. At times I felt I was better (I had a glorious symptom-free 10 days last year and a week of almost no pain a year earlier) or 80-90% better, to then sink back low again to feeling like I have made very little progress. Currently I’m in the latter situation. However, mentally I am much much better than when I started. In fact, that has been a big win.
The reason why I’m writing is to ask the long termers how you keep your belief and motivation alive? As time goes on, I fall into doubt so many times and have to find ways to reassure myself with evidence lists and pain science and so on over and over. I almost think there should be a special programme for those of us who have been working on this for years. For example, short recovery stories were motivating at the beginning, but now I find them depressing. I tried restarting the online programme I had done before, but that depressed me a bit too and made me feel like a failure. What would you suggest? Should I try a different programme?
Currently I meditate daily, do breathing exercises, sometimes I journal, but not very often any longer. I seem to have run out of things to journal about. I try to catch negative thoughts and reframe them, but don’t always succeed. I am quite active during the day, except for when I’ve had a particularly bad night and I’m too tired. I have very little stress in my current life, other than the TMS symptoms themselves.
Recently, since coming on to this forum a bit more and reading the posts here I have become more motivated again, started listening to more podcasts, increased my mediation practice and have decided to start journaling regularly again. I am not sure what else I can do. Should I just keep at it and believe that the unconscious mind is changing? Any ideas? Is there anyone out there who took longer than four years to recover?
I would so appreciate any comments you may have and thank you for reading this long post.
But I journaled about this so many times. Maybe I have to do it again and again. It's painful.