Pain Management successes and failures

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HI all,

​   I wanted to hear some of your experiences with pain management doctors.  I have been involved with pain managment doctors (usually anesthesiologists that have branched off into this specialty) for about 5 years now.  Frankly I continue to see them since they have provided me with hydrocodone during that time and this does help to some degree.  However, I have also tried many of their various treatments.  I have had epidural injections, nerve ablations, trigger point injections etc. etc.  Most of the results have been very minimal if anything and any results that I did get certainly didnt last very long at all.  I was wondering if it is very common for people suffering from AS or one of the other related inflammatory diseases to seek help from pain management doctors.  Have any of you actually been helped to any significant degree by them?  For the most part I dont believe they really understand the inflammatory process.  They ask me where it is hurting and when I tell them everywhere in the lower back they look at me like I'm just a hypochondriac.  They assume that the pain has a specific source and their treatments should be able to fix it.  My pain is severe but cant be localized to one source.  Have any of you worked with pain management people and has your experience been different?

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  • Posted

    Hi Peter, seen a "Pain consultant" for facet joint injections when I broke a T7 vertebra but to be honest I recieved more benefit from the pain therapist to whom I was referred at Chelsea and Westminster Hospital.

    She taught me about the pain experience and the pain process, giving me pacing techniques to cope so that I entered an upward spiral on pain rather than a downward one. To begin with it was difficult. Stopping driving when pain arrived was not easy, or marking (lecturer) with an egg timer seemed bizarre but it was long before I began to see the benefit... longer periods without pain....

    Pacing became an integral part of my life: rest /work /rest work and so on applied to all areas of life. Life returned to an even keel

    I later was referred to a pain clinic run by a primary care trust ( back under control but by this time I had Psoriatic arthrtis) and added the concept of mindfullness to that of pacing.

    So pain control is not all about medicine its all about your coping mechanisms. Learning how to keep yourself intact despite the presence of pain. If you have not been referred to a pain therapist...ask. You will be doing the work though finding out what works for you and how to keep pain at bay

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  • Posted

    Thank you for that information Okapis.  I wonder though if that is an approach that is more prevalent in the U.K. than it is in the U.S.  I live in the U.S. and I suspect that If I tried to find a pain therapist here I would be directed back to a pain management doctor who, as I stated before, is simply an anesthesiologist who has specialized in certain pain related techniques.  It is something to look into though. Thanks again.
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    • Posted

      The abscence of pain therapists in the USA would surprise me. Pacing for pain control is not exactly new....but maybe the US system leans towards doctors and fees!
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  • Posted

    Yes, absolutely.   Doctors, drugs and fees.

    There are likely subtle and not so subtle differences between the advanced countries when it comes to pain management and other things.  I have spoken a couple of times on this forum about AS being just one variation of a family of inflammatory autoimmune diseases that effect the spine/SI Joint/Hips etc.  That view that you can have a chronic inflammatory process without seeing signs of fusion in the radiographic imaging is pretty new and as far as I can see it started on your side of the pond.  Most of the early studies that addressed that topic seemed to originate over there, at least the ones that I saw.  As a matter of fact it seems to me that AS in general gets more attention and more study in GB than it does here in the states.  I could be off on that but to me it does not get the same attention and concern over here as it does there.  At least not yet.

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    • Posted

      Yes I think youre right...when I was first diagnosed, fortunately at one of the London Teaching Hospitals there was very little research on the inflammatory arthritis conditions with the exception of rheumatoid arthritis. Since I was first diagnosed in 2001 there is a lot more interest, associated research and consequent impact on treatment.

      for which I'm thankful.

      Pain management though is not dependent on inflammatory arthritis it has plenty of other applications so the abscence of non chemical pain management is definetely odd!  

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  • Posted

    To clarify I need to make two points.  First I'm simply saying that I am not familiar with that approach (specifically pacing to relieve pain and related techniques).  I dont claim to be the expert nor have I sampled everything out there so it may be sitting right here under my nose.  Secondly there are non-chemical approaches like acupuncture and simple physical therapy here in the U.S. which many find useful.  I have tried physical therapy.  After a lumbar laminectomy procedure I went through a couple of years ago I was put on a physical therapy regimen.  They were focusing on building up the core muscles of the body to support the back.  However I found that the physical therapy itself did not work for me because I could not get past the fact that it seemed to aggravate my back pain more than help it.  But there are non-chemical approaches and maybe the one you describe is embedded somewhere in them.  I simply havent experienced it. Thanks again Okapis for responding.  It is enjoyable to talk to someone else who has shared some of my experiences.
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  • Posted

    I have been down every route going to try and manage the pain from specialist too specialist and almost gave up until a stand in GP said try Fentanyl patches topped up with oral morphine after a few days of flying as high as a kite and being sick it worked now I can get through a day with out crying in pain. The down side is hat once you are on the patches its dammed hard to get off them. Three years ago on holiday some git broke in to my hotel room and stole my meds, trying to get a none English speaking doctor to understand that I was having wit drawl symptoms due to no patch and screaming in pain was shall we say a large challenge .
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  • Posted

    In the USA there is currently a huge push starting with the CDC (center for disease control) to squelch the use of narcotic pain medicine.  The problem in this country is that they only see black and white.  Either they make it so easy to get hydrocodone or oxycontin that anyone can almost get their hands on it OR they try to make everyone feel dirty about using it and make it very difficult to find a doctor willing to prescribe it.  Thats where the U.S. is going now.  Your GP was very bold when he or she made that prescription.  I cant imagine finding a doctor now who would do that over here even though AS can be brutally painful.  Unfortunately that addiction is the ugly reality of some of those drugs.  Wish it were not so.  I wish you the best with that.  
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    • Posted

      Peter thank you I can understand the black and white of it lots of people take the Mick with drugs, but and its a big but if a doctor can see that you are suffering then thy are duty bound to help you to their best ability I had suffered for years and my regular GP was blinkered but the stand in was great so great that he is now my regular Gp in practise miles away but boy worth it. Pain is no joke at all and the patches work they do say that it is a last resort and it is I have hurt my self and missed injures due to the pain patch but in my eyes it's worth it. Quality of life too me is first and for most I now have a life again it's not great but better than nothing, ask your doctor to give it ago there are different strength patched I was on the highest level at first  and through trial and error found the right dose do not let them fob you off fight them some times you win and some times you lose. Take care my friend.
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