How do I find a good pain management specialist?

[GlasgowTallBoy]

I recently moved from the US to Scotland.  I suffer from Marfan syndrome.  In my case, expression of the faulty FBN1 gene is prominent.  I suffer from extensive disc degeneration, spur formation, Schmorls nodes formation, an annular bulge, bone marrow signal changes indicative of fatty degeneration, levoscoliosis, a pectus excavatum, joint deformities (my jaw dislocates spontaneously), gross anatomical abnormalities, bilateral facet arthropathy, and unbearably painful osteoarthritis.  In addition, I am severely osteoporotic, ruling out corrective surgery at this point (I am taking alendronic acid in an effort to remineralize the bone tissue in question).  Both knees are badly damaged -- X-rays show prominent bone infarcts.

NOTE -- even were surgery possible, I would avoid it.  I would avoid it because I have suffered through two episodes of methicillin-resistant staphylococcus aureus (MRSA) infection and am unwilling to take my chances with a third episode of a potentially far more serious nature.  My father underwent minor foot surgery and contracted MRSA -- he nearly died after spending an entie year in the hospital being treated for MRSA, and had to undergo extensive surgery involving replacement of a lumbar vertebra with titanium rods and caged rib bone fragments.

When in the US, I saw an enlightened pain management specialist who put me on a regimen of OxyContin 80 mg twice daily (initially 60 mg twice daily, increased to 80 mg twice daily about five years into therapy).  I also took hydrocodone / acetaminophen 10 / 325 mg #240 per month for breakthrough pain.  It has been seven years since that one upward titration, and I now have to take oxycodone instant release capsules on a regular basis to beat back breakthrough pain, which is no longer really breakthrough pain, given its severity and given the prominence it has assumed.  Clearly, another upward titration is necessary.  I have been very lucky, only undergoing one such titration in 12 years of therapy.

The problem is simple -- where do I find a pain management specialist on the NHS who can help me with this issue?  Can my GP help me?  What do I do about finding a pain management specialist?

My GP is a kind and decent woman who does not hesitate to prescribe adequate amounts of oxycodone extended release (OxyContin) and oxycodone instant release (OxyNorm).  She also prescribes lorazepam, which I take to control panic attacks that were so severe as to render me agoraphobic for several years.  I know that the benzodiazepines fell out of favor in the 1980s, but there was a marked trend in the NYC area towards prescribing them once again in the mid- to late-1990s and beyond (for some reason, alprazolam became the BZD of choice for most physicians).

I DO NOT WANT TO LOOSE THE CARE I CURRENTLY RECEIVE BY OFFENDING MY G.P.  However, I need an upward titration of the oxycodone in order to cut back on the number of OxyNorm 10 mg and OxyNorm 20 mg capsules I have been taking.

Can anybody give me advice?  I am anxious to resolve this problem as soon as possible.

Thank you......

[MissBecca24]

I would tell your doctor that you are wanting to get to a lower dose and see if he or she can help. I would ask her to help im sure that she will understand and do so. Or I would ask for a referal. I cant imagine what you are going through but hang in there and hopefully things will get better and they will get you where you need to be to be safe and not in pain

Becca

[avisg]

I think perhaps you posted this on the wrong forum ,i believe there is a pain management forum ..
Good Luck :)