Chronic Pain Relief

[murdina]

Have attended Rheumatology and RF scleroderma clinic. Have never had any treatment, diagnosed 2005 by Gastrologist complete hypomotility of oesophagus and bowel. Fibromyalgia throughout spine and Patella disease both knees. Have struggled with pain for last 20 years and find lack of organised pain clinics prescribing steroid injection. Waiting lists of 4 months are unacceptble and Denton and his team could do a lot better. Too much cloak and dagger going on and conflicting reports disagreeing with CT scans, Fibromyalgia throughout spine and diagnosed SLE untreated. Underfunding and too many Rheumatolgists who have no duty of care and GPs refusing to follow instructions regarding medication prescribed. NHS Doctors are negligent in care of Patients with Osteoarthritis, severe knee pain, back pain and Osteoporosis not providing pain relief confirmed by private consultant pain specialist, stated "NHS does not have a duty of care to Patients" suffering chronic pain.

[pino99]

Hello Murdina,

Sorry to hear you are struggling with pain and feeling let down on your care. I am not very clear from your post, do you have scleroderma, SLE, RA or OA? Or a combination of all those? I have scleroderma and RA and I have found the care and dedication of my rheumatology team here in the South West, supported by Prof Denton in London, absolutely amazing. Do you have a consultant/registrar you normally see? If so, can you get an appointment and discuss starting treatment? I was not treated for about five years, but then pain started increasing and my quality of life went down, so I was started on fairly aggressive treatment which has made quite a difference. If not, can you ask your gp to refer you for an urgent appointment. Make it clear that you are in too much pain to function and that you need some kind of intervention asap. I hope you find some relief soon.

Pino

[murdina in reply to pino99]

Diagnosed 2000 with SLE/overlapSCLERODERMA. 4 Years steroid injections Fibromyalgia througout spine and nerve root damage

Inflammation Bladder infections 4 years.

Attending UCLH Elizabeth Garrett gynaecologist/urology who make up for the failures of Rheumatolgy/scleroderma refer me as Complexed?????

[pino99 in reply to murdina]

Sounds like you need to be referred to a scleroderma expert. Are you on any DMARD at all? With all that inflammation going on in your body it certainly looks like you need something more than pain management. Have you asked to be referred to the Royal Free? You do mention Prof Denton in your post, but I am not sure if you have had a consultation with anyone in his team. Or your local hospital may have a good rheumatology team, may be worth asking. If you feel they are fobbing you off and not giving you the care you need, you can go to PALS in your hospital and start a complaint, that sometimes gets things moving quite sharpish.

Best wishes,

Pino

[MissusTee]

Hi,

I am prescribed bu-tec pain patches for my osteoarthritis, and the consultant told me that scleroderma makes the pain worse. You need to ask for a rheumatologist that specialises in scleroderma, and you can ask to e referred anywhere in the country.

[murdina in reply to MissusTee]

Thank you for information on patch will ask GP. We need to stay positive, lovely sunny day, wish you better health and pain free.