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Complicated saga. Back pain/Painkillers

6 replies

YellowDesk · 29/07/2018 13:22

Ten years ago I was in a minor auto accident, and in the months that followed I developed significant pain in my mid and upper back. I was told the pain was likely radiating from my neck. An MRI of my neck showed two herniated discs. I had an operation to fuse the vertebrae but it had no effect on my pain, and I am still in pain today. An MRI of my mid back showed several herniations and bulges in my thoracic spine. The doctors are attributing my pain to the thoracic herniations, but surgery on this area of the spine is incredibly complicated and risky. So I just need to manage the pain. I have done tonnes and tonnes of physio, had more spinal injections than I can count, as well as acupuncture, osteopathy, Pilates, massage, mindfulness/meditation, TENS, I wore a brace for for six months, I trialled a spinal cord stimulator, I’ve even tried medical marijuana. I’ve been tested for vitamin deficiencies and exposure to mold and toxic heavy metals. Everyone has a story of how XYZ stopped their back pain and I have tried all of it.

The only thing that helps at all is painkillers. I have been on a regimen of various opioid meds constantly since my neck surgery eight years ago. For the most part I live a normal life but my day is focused around the pills. I am on one long acting med and one short acting, plus pregabalin. I dole out the pills for things that are important, like spending time with my kids or going out. When the pills kick in the pain is dulled to a manageable level and I feel capable of doing things. I don’t feel tired or high, I just feel like my normal self. But when the pain comes back I just want to lie down by myself. Unfortunately the pills only work for a very short time, even the supposedly long acting one. I am up and down many times every day. I’ve been on the same dose for three years now so I’m sure my body has become tolerant and I probably need more. The docs are generally happy to give them to me as there is clear MRI evidence of my pain and I take the meds as directed.

I read some things recently that said opioid painkillers should never be used on a long term basis. Allegedly someone in my position is experiencing withdrawals throughout the day and the pain is worse because of being on it so long, and if I got off the meds my pain would eventually ease.

I am a stay home mom but the plan is for me to go back to work at some point, and I’m not sure I could do it (desk job). Luckily money is not a pressing issue, but my DH has a demanding job with frequent travel and we have absolutely no family support. I have three children aged 10, 6 and 5, so not babies but they still need me a lot. The middle one has mild SEN.

I don’t know what to think at this point. I’m certainly physically dependent on the meds and I would have major withdrawals if I stopped cold turkey. Even tapering would feel extremely difficult. But I take them as directed and they do help. I have no reason to think the original pain would be less than before if not for the meds but I don’t know. Finding out would take 3-4 months of me being completely out of commission and possibly away from home, which is just not possible until the kids are much older.

I also don’t think we really even know for sure what’s causing the pain. Thoracic herniations are very rarely symptomatic. If you did MRIs on 100 people my age, 25 of them would probably look similar to mine. Disc herniations typically present as one sided shooting or stabbing pain, or numbness. I have none of that. My pain is on both sides and feels like a deep muscle ache. It doesn’t get worse with any type of movement, and it doesn’t get better (even temporarily) with any of the treatments I’ve tried other than the pills. It also hasn’t really changed much in 10 years. I’ve considered that it may be psychosomatic in some way and I consulted a pain psychiatrist. But he and all the other docs seem to think it’s “real.” My mental health has been basically stable my whole life and I haven’t experienced any major trauma. I have a really good life, or at least I would if it weren’t for the pain.

If anyone has gotten this far I thank you. It’s been a bit of a saga. I don’t expect that anyone on here will be able to help me but there are many wise people on MN and maybe someone has some insight.

OP posts:
PersianCatLady · 29/07/2018 13:26

I went to the pain clinic because I wanted to try BuTrans patches but they aren't available in my NHS Trust.

The pain clinic tried to convince me that the pain was all in my head and tried to stop my painkillers altogether as "opioids don't work"

Basically the NHS is so scared about the opioid epidemic in the USA that they are peddling this crap. I know that opioids work and I can't respect someone who lies to my face.

YellowDesk · 29/07/2018 18:27

I totally agree, PersianCatLady . How long do you usually go before you need to up your dose? If it makes you feel any better, I found Butrans patches to be useless. I got them privately but they weren’t worth it. I usually go to the private pain doctor every six months or so and then he writes to my NHS GP recommending whatever meds and dose, and the GP prescribes it onca continuing basis. The GP has never questioned it, although I am on a fairly high dose. I think they are just happy to not have to think about it.

It really scares me to think of being on this stuff the rest of my life. Although I’ve been on it this long so maybe I could be ok.

OP posts:
PersianCatLady · 30/07/2018 08:17

I am not worried about being on these meds for life.

I fractured two vertebrae in my back by falling from a second storey window and I could have ended up in a wheelchair.

I have not upped my dose in six years because "opioids don't work for chronic pain"

allypally999 · 30/07/2018 16:03

Oh dear that's not good at all.

I do speak to people on opiods who have found them less effective after a while and have gone cold turkey (just as horrible as you suspect) to reset and start again with the drugs. I'm not recommending it but just saying

I had back surgery 10 years ago and manage mostly with over the counter drugs and codeine top-ups. My GP practice don't seem to like giving out drugs and I worry as I age I will need more and they won't give them. I am in pain every day but it varies. I have a good physio and stopped working 3 years ago so am in a better position than some but it is depressing (and I also take anti-depressants).

You don't have to have mental health issues in order for it to be "in your head" as chronic pain is remembered by the brain (and nerves) and you continue to feel pain even when you have been "fixed" so it is real pain. Back surgery is notoriously unreliable so I am one of the lucky ones who can still walk and stand a bit though the pain can pop up anytime in my legs, feet, hips, etc. I don't know much about necks but mine is buggered after 40 years of desk jobs. I find heat works but not in this weather obviously.

And I haven't been any blooming help at all but can empathise!

PersianCatLady · 31/07/2018 00:43

@allypally
Thank you for your post, you have given me a lot to think about.

PersianCatLady · 31/07/2018 00:45

@YellowDesk
If you don't mind me asking, how did you go about getting BuTrans patches prescribed privately?

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