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• Referral from September 5, 2013
  

  Andrew B. asked:

  I'm hoping someone can give me some advice regarding cardiologists, pain clinics, and hyper mobility joint experts/clinics in the Greater Manchester area... After 15 years of being treated solely by my GP, she sent me to a consultant who ultimately referred me on to the local ME/cfs Service. Once I'd been seen by a nurse and physio, questions were raised over chest pains I get (which I've experienced for years now, but more recently had constantly to various extents for over a solid 12 months, and had fairly badly during the nurse's 2nd visit), and hyper mobility in my joints (something I've had all my life having been born with a shoulder I could dislocate at will, and which I'd previously approached my GP about but been told wasn't worth having looked into). They also told me that I'm unusual in that pain is by far my worse symptom (I have all the usual symptoms of ME and for the past few years have been virtually housebound, but pain has always been the most constant and usually most severe symptom) and requested I be sent to a pain clinic. Now I have the referrals through and I was wondering if anyone had advice from their personal experiences about which hospitals/clinics in the area might be good or should be avoided for someone with ME? For example, there's not much point me seeing a cardiologist who refuses to even believe in ME, and certainly I don't want to go to a pain clinic where the doctors won't take my illness seriously - especially given many of the horror stories of ME patients having their symptoms ignored and psychiatrists brought in. Any advice would be massively helpful. Thanks in advance to anyone who can help.

  

  Chris H. replied:

  I have had Perrin Technique and found it definitely helped with ME, moved me from being bedbound to managing to get out and about a bit with my mobility scooter. I went to Gail Sumner here http://www.backtohealthphysio.com/practitioner-details.html Unfortunately I started with a lot of pain in my ribs diagnosed as costochondritis but then discovered I also have COPD. At the same time HB messed up so I couldn't afford to continue. Don't know whereabouts in GM you are Andrew Burgess but I found Salford Royal for ME a waste of time. Struggled to get there twice for all the usual tests and was then told "You have ME".........err yes, I've known this for years???? "Oh we only offer a diagnosis"????? Was then offered a further referral for CBT and GET- no thanks! Bolton and Wigan offer pacing and graded activity over a short course- don't dare be ill and miss a session!!!! Don't know anything about hyper mobility sorry but will get back to you re cardiology. Have a friend who is under one in Salford area and has had excellent care- she doesn't have ME though but I do think that sometimes we have to let each specialist specialise in their field rather than getting the usual "Oh that will JUST be your M.E"! I'll PM my friend and let you know who she sees. Good luck x

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