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Day 1 - very hopeful but equally scared it won't work

Discussion in 'Structured Educational Program' started by FleurDeLys, Dec 17, 2016.

  1. FleurDeLys

    FleurDeLys Newcomer

    Hi everyone,

    This is my first day of following the program to cure what I think after all this time might just be TMS. As the thread title indicates, I am very hopeful that the program will help me get rid of the pain and be able to manage any potential subsequent flare-ups. But I am equally scared it won't work.

    To give you more background on myself, I am a 31 year-old French woman living in the U.K., and have been suffering from lower back pain - mainly on the right side - since August 2013. My symptoms and pain have slowly and gradually worsened over time, and spread to other areas of my body. First to the right neck / shoulder area in February 2015, then to the right buttock / leg area in December 2015; and finally to the left side of the lower back a few weeks ago. I feel the pain intermittently in all those areas.

    I have pretty much tried everything: initially physiotherapy, chiropractic and a lot of sports massages. When I realised with frustration that despite the treatments I wasn't getting any better and that the pain was spreading to my neck and shoulder I decided to be referred to a neurosurgeon. The MRIs confirmed there was nothing wrong with my spine and nervous system in general - in fact my spine is in very good shape from top to bottom and is perfectly normal, with no abnormalities whatsoever such as protrusion and herniated discs. No sign of trapped nerve either.

    I was then referred to a pain specialist who advised to have MRIs of the sacro-iliac joints and hips. Again, everything is normal. I had blood tests done to check my inflammatory markers levels and other stuff. The results came back normal. He then tried trigger point and steroid injections in the shoulder, QL, trochanteric bursa etc. A total failure, I was still in pain. The pain specialist then concluded that "there was no physical underlying cause for my pain" and that I shall just learn to manage it with the help of a physiotherapist. Thanks for nothing, and welcome back to square one.

    The physiotherapist told me after examination that my core and gluteal muscles were weak (which was certainly true) and that this was most probably the reason behind the muscle tightness / stiffness and the resulting pain I felt on an almost constant basis. That was in February this year. And so I started doing a lot of exercices to strengthen my core muscles, I religiously went to Pilates classes 3 to 5 hours per week including expensive one to one sessions using material such as reformer. At the same time I decided to go and see another pain specialist that was recommended to me by my ex-partner. He didn't come up with any particular diagnosis but advised me to keep up with the Pilates classes, do a bit of swimming and have Botox injections followed by acupuncture sessions. So I had a course of Botox injections in June this year, followed by a few acupuncture sessions. The pain subsided during the summer, and so I thought things were getting better. But the pain came back big time in September, and as I said earlier spread to the left side of my lower back.

    I went back to see that pain specialist two weeks ago, and he doesn't understand why my symptoms have worsened. He acknowledged the fact that, with all the efforts I had been doing over the past 6 months (intensive Pilates, daily stretches, swimming, sports massage, acupuncture) my problem should have vanished by now! It doesn't make sense for a perfectly healthy young woman with no abnormalities and stronger core muscles to be in pain ! He suggested to check my vitamin D levels and do another set of inflammatory screening, as recent studies have shown a correlation between vitamin D deficiency and chronic aches. In addition I should also go through ultrasound examinations of both hips to see if there is any tendonitis developing around the gluteal insertion sites. I am awaiting the blood test results and have planned for the ultrasound exams, which I suspect will come back negative.

    In the meantime the doctor has advised me to take a wide range of food supplements (omega 3 fish oil, turmeric, vitamin D3, gélatine and glucosamine chondroitin), which he says seem to be helpful with people with widespread pain.

    I read Dr Sarno's book last weekend and it resonated so much with me that I noticed a reduction of roughly 30% in pain whilst reading it. I share a lot of the typical TMS patients' personality traits: I am perfectionist, very self-critical, set high standards for myself, bottle up anger, try and please people too often and perhaps too easily.

    However, the pain came back big time on Wednesday and has not left since - don't know if this could be an extinction burst, as in the pain throwing a tantrum because I might have understood its root cause. I have decided to stop all physical treatments, resume gentle breast stroke swimming (which I was told is very bad for the back) and have set myself to walk 10000 steps per day. I am also taking the aforementioned food supplements, as I don't think there is any harm in doing so, especially in winter.

    There are only a handful of TMS therapists in the U.K., but it turns out that one of them works 15 minutes away from my place by foot! I have made an appointment to see her on Tuesday to confirm the TMS diagnosis. I must say that as opposed to a lot of people, I wouldn't say I am suffering from severe TMS, because I am still able to do normal daily stuff such as sitting, walking, standing and lifting. However siting for a long period of time (especially in a car or on a plane) or standing at the end of the day can become excruciating - and I am mostly concerned that it will gradually become severe as times goes by.

    I guess this rather long post marks the beginning of my recovery journey. Any words of advice or encouragement would be much appreciated. Thanks for reading.
  2. pspa

    pspa Well known member

    1. Your journey through most or all the usual suspects of both conventional and alternative medicine is very familiar, and probably typical of many.
    2. The fact that you have pain in so many different areas that moves around, and doesn't respond to physical treatments, seems inconsistent with a structural cause. Also, I could be wrong, but all your pain symptoms sound muscular which of course is the most common type of psychogenic-based pain.
    3. This stood out to me: "The pain specialist then concluded that "there was no physical underlying cause for my pain."" That's better than most of us will ever get a doctor to say.
  3. FleurDeLys

    FleurDeLys Newcomer

    Thanks for your reply, I would indeed say that 80% of my pain symptoms are muscular, and the remaining 20% are linked to very sensitive tendons around the hip area.

    As far as the pain specialist's diagnosis (or lack of) is concerned, he was for sure the only doctor I came across who told me that, but it definitely annoyed me at the time because he didn't offer a real diagnostical alternative and so it didn't make any sense to me. Why say there is no significant physical cause for my pain and then advise me to go and see a physiotherapist who by definition only treats physical issues. This is illogical. And yet I went to see a physiotherapist because I couldn't think of anything else, and also because we are culturally emdoctrinated in western countries to trust what doctors say..
  4. pspa

    pspa Well known member

    I don't know what this particular doctor was thinking but there are different reasons to do PT, one would be to "fix" something allegedly physical (posture, weakness, imbalance, etc.) which would seem to be inimical to a psychogenic diagnosis, but the other would be simply to move and stay active and calm the nervous system and overcome fear of using the parts of the body that hurt, which to me anyhow is not inconsistent (see Ron Siegel's Back Sense).

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