Off to see Prof in neurology pain clinic in London - wish me luck :-)

I have been under the neurology pain clinic for a few years because I developed myelopathic pain from a spinal AVM 12 years ago. He definitely thought last time that my increase in pain was not due to the spinal lesion, and was interested in the view of the rheumy consultant. He also seemed to think being on holiday made me better and my symptoms were down to stress. As we all know stress makes it worse . . . . but I am a bit anxious that he will dismiss the fibro and not acknowledge the debilitating symptoms including the pain. As he is a neurologist, I am hoping that he is prepared to acknowledge the nature of fibro - but I reserve my judgement .... having seen that many Drs don't believe the condition has any foundation other than psychological. As others have said - if they could feel the symptoms themselves they would know it wasn't all down to being stressed! I'll update my blog later when I have got back ......

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  • well good luck it will be interesting to see how it goes ,looking forward to the update xx

  • Goodluck let us know! i get stressed unknowingly that is why i was put on Beta blockers apparently because i had a pulse rate twice as fast as a normal person ad double speed..anyway I do not believe it is Stress related fibro although i believe it can 'provoke' symptoms and make them worse! The weather etc depends what you have aswell if you have other things along side it. So guess you will have different things going on and it is pinpointing things.

    If you still have debilitating pain not sure why would dismiss fibro unless itis down to another problem . think it is hard to say for definate as if you look up and google and find how many things have the same similar symptoms is quite interesting.

    I never knew half what i do until this year looking a lot up cos put everythging down to cervical spine indenting discs with nerves but not so anymore 'apparently' so shall see what else happens .. So i am interested to know how things go with you ;-) xxxxxx

  • Hope you got on okay Suzy, look forward to hearing how it went. Angela xx

  • Oh my ... what a day ... got to the train station only to find all trains southbound (i.e. to London) had been suspended until further notice.... due to signal failure 2 stops down. So, having already paid for parking, I drive to the next town 40minutes away and buy a ticket to London on the advice that there is a train to London. I sit on the train relieved that I still actually might arrive at my appointment on time. Then we are all told to get off the train because it hasn't got a driver, and the driver from my home town (40 min away) is coming in a taxi to drive the train. I'm getting really really stressed at this point. I call the out patients and explain I am going to be late but I'm on my way. The consultant said he would still see me. Still I am stressed about getting to the hospital ..... eventually the train driver arrives and the journey to London continues. At last, all of a dither, I arrive at the hospital at 17:15 - 45 mins late for my appointment but of course outpatients is closed. I am shown into the neurophysiology department to wait - and it takes me all my effort to get my anxious body to relax. Eventually at 6pm I get to see the Prof. At least the was quite relaxed, and he reads the rheumy letter. The upshot is that I'm on Gabapentin and Citalopram - in the doses he would suggest and thinks pregabalin wouldn't make a great deal of clinical difference. However, and this is something I have yet to really get my head around - 'this type of pain is notoriously difficult to treat' and the main approach is now learning to live with it. Very disappointing, but of course I kinda knew that already, I just lived in hope that he would recommend some kind of different drug. He is keen to make sure the side effects of drugs don't outweigh the benefits. He said getting back to work would enable distraction and counselling would help me accept the life I have to adapt to. I think I am both physically and emotionally shattered now. :-(

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