So, I had an interesting appointment today. I absolutely trust my GP 100%. He is fantastic. He has helped me so much. But since Covid, it has been impossable to speak to him, let alone see him. So today I had an appointment with a GP who I havn’t seen before, with relation to a new probelm which Ive been experiencing for the past 5 weeks. Basically Im experiencing a lot of pain in my lower back, which keeps me awake at night, and almost constant abdominal pain. I have issues in this area with chronic constipation (sorry for the overshare!). But these other problems are new. So a couple of weeks ago I had a blood test, which thankfully came back ok. Unfortunately the pain is still there. So I finally saw this GP today. She was perfectly nice, but basically suggested that because I already have so much pain from the CRPS, that perhapse I am anticipating and expecting more pain! My 1st thaught on this….. what???? I have enough pain as it is, I do not need, or want more; and it is not in my head! So what to do when a Dr does not believe you, or tells you they think its all in your head…. I wish I knew. The pain is still there right now, so am I supposed to just live with it, like the crps, with no treatment or investigations to find out why it is happeneing? It feels that way. Infact at the moment im feeling like ive been cast aside completely. Ive finally got an appointment with a pain Dr, who is great. But that is not where I live in Exeter, im having to go to Bristol. My GP refered me to Exeter I think about 6 times or maybe more in the past 15 months, and I have not had one appointment or spoken to, or seen a doctor about my crps returning; until I went to London for my pain course, which BLESMA refered me to.
Sorry for the rant… it is so unbelievably frustrating. I have enough with the crps trying to dictate my life, let alone more pain from othet areas. Im trying to come off of my ton of pain medications as they do not help with the crps, but now I am having to take them because of the pain elsewhere!! Not helpful! So the plan now….. hope nothing bad happens, or gets worse!!
On the good side of life, I am loving my hand bike. It is just amazing. Really hard work, which I kind of like. I can do 6 miles at the moment. Practice makes perfect though! The wheeling is also going great. Ive mad my 1st target of Exeter quay to Turf locks, which is about 15 miles. It was awesome. I cant wait to go further, which will be easier when public conveniences re-open!!
I find myself fortunate that other than an extremely neglectful pain doctor before my amputation, that I have made it this far before having a Dr accuse me of pain being in my head! It seems to be a common thing amongst people with chronic pain conditions. It shouldnt be. Just because you suffer with one pain all the time, does not mean that others are not possable! I have to say, this all left me feeling quite upset and frustrated!
So what would I advise others. See another Dr, ask for another opinion. You know your pain, and what you are suffering, others dont. There is no point in waiting for something bad to happen, or suffering for longer because of being afraid to speak up. So I would speak up. I am going to 🙀