Hi Lucy, new to this topic but not to forum. It's funny as in UK each surgery decides how much pain med level they are happy to dish out to patients. My GP has been great, having major problems fro side effects from Humira (that I was only on for 6 months) causing nerve pain, joint pain, fatigue, hair loss and she was more than happy to try different pain meds and nreve block to give me some relief until we get a dx. Have seen a rheumy last week but won't get results for 3 months, not holding out much hope as my body has amazing ability to not co-operate by producing positive tests when I have something. For example, had abscess wrapped around stoma, it was huge, that gave me sceptcemia and peritonitis and not one of my blood tests showed inflammation and nor did I have any temperature. They only found out extent of infection when they opened me up and what they thought would be a 30 mins look around turned into 6 hours of dyno rodding and re plumbing my intestines. So not holding out much hope that my body does what it is supposed to according to their medical books. Hate dealing with new doctors and trying to explain that to them as they think I'm just being difficult.
Like I said my GP has been brilliant and had no problem giving me fentanyl patches and butrans patches, unfortunately didn't work as they clashed with the co-codamol that I take for neck pain but also need the codeine to slow bowel down as have had much of small bowel removed. So after my rheumy appt dashed back home and saw her same day to get some pain meds sorted as was only on tramadol and that wasn't doing anything and also was killing my appetite, not great as need to consume 4000 calories a day to maintain weight as short bowel syndrome. So she changed me onto oxycodone and gabapentin and still keeping the amitriptyline at night, the oxycodone to keep codeine in my system for bowel.
Then again speaking to a family member their GP has told them they are not allowed to prescribe any controlled pain meds at the surgery they are at. It may be that I live in small town and not great number of drug problems whereas my family member lives in a city. It is unfair and I have only had this pain problem since May, if I didn't have helpful GP not sure what I would do, she is doing everything she can to enable me to continue working, well signed off for 2 weeks at moment to get levels of new meds right and let body get used to them, and for that I am grateful.
I really hope you get something sorted soon, not sure how things work in US as they seem more complicated with insurance etc than over here but know a friend of my has fibro and maximum meds she is allowed is tramadol and so she has now had to give up work and go on disability benefit. I know from my many years of crohn's that the pain is unbearable and have been in the situation of wishing I would not wake up, not because I wanted to die but because I wanted the pain to stop and this was when I was 20 years old. The pain from CD did stop when I had colon removed and had ileostomy done just before my 21st birthday, it was my best birthday present ever, even when had flares I have never had anywhere near the pain I had before and now ironically my bowel is the only area of me that doesn't hurt, ha blooming ha. Irony - thy name is stripey's body.
Oh, what else I find bizarre and I am Christian, non church going but still a believer, is the number of doctors/consultants etc over there who have the option that your pain is something to do with you not having made peace with God. What the **** is all that about, over here they would face being struck off for making comments like that and people have been. Whether you are a religious person or not makes no difference to whether you are in pain or not and to suggest otherwise is offensive verging on quack 'dard ages' medicine. Yes, positive attitudes can help with dealing with pain but not all pain is linked to levels of 'feel good' chemicals.
Crohn's, antiphospholipid syndrome, Crohn's arthritis, very low blood pressure, low kidney function, ezcema, asthma, ileostomy, numerous surgeries for abscessses & strictures. Humira - very bad permanent side effects incl joint pain, hair loss, fatigue & nreve damage. Azathioprine, immodium, simethicone, fludrocortisone, oxycodone, gabapentin, tramadol, amitriptyline, Folic acid, vit d & calcium.