Don’t Leave Me in Chronic Pain

Last week, the news broke that NICE had advised all GPS to stop prescribing chronic pain sufferers painkillers. This included paracetamol, any of the ibuprofen family and opioids. Apparently there is a lack of evidence that they are effective and it leads to long term risks.

When I saw the headline, I thought well *maybe* they will have come up with a better pain relief… I was hopeful because even after the horrendous journey I have had with the medical world understanding my disease, I thought that *maybe just maybe*, it had changed and progressed in the past fourteen years…

Then I read their alternatives.

I mean I can’t begin to explain how disappointed and angry I was to read that instead of pain relief, doctors were being told to prescribe antidepressants and cognitive behavioural therapy. I must hasten to add, there is a potential of getting a short term acupuncture session. But other than that, I feel downtrodden.

“The reality is I will soon struggle to get any of the pain relief that helps me live.”

I am lying here tonight in searing agony. My feet are pulsing because I tried to stand up for longer than I have been able to manage for a while, the backs of my knees are throbbing so intensely that I can barely move them and I’ve hurt my back. I haven’t been able to get to my bed without my husband supporting me and half carrying me.

The reality is that I will soon struggle to get any of the pain relief that helps me live when my pain reaches uncontrollable levels. It doesn’t matter how much I describe it to my family and friends, no one can truly understand the intensity of this pain – other than the chronically ill community. We are struggling. We are alone. We are suffering.

Let me just make it very clear, I do not want to be drugged up to the high heavens. I know what it is to be so medicated that my speech became slurred and it was not a pleasant experience by any means. In the time since becoming pregnant with my daughter, I halved the list of medication that I was on. I came off opioids, muscle relaxants and neurological drugs that I had been on for years and I have not gone back on them.

But I’m struggling now more than ever. I am in tears of frustration because I can’t even pick my daughter up without sharp pain that takes my breath away. I have so many questions that NICE have failed to answer when they have hit this bombshell on the chronically ill community.

The pain in my back has heightened because I started doing some exercises. I have hyper mobility syndrome on top of my M.E. and have dislocated my knees and damaged my wrist. My body is fragile and the physiotherapy team have told me that if I do not do these small gentle exercises to strengthen my knees and wrist, I will lose the function. They have already said that my physiotherapy will have to be long term to get any improvements.

It was hard enough with the catch 22 of not having the energy to do these exercises and then losing function, or pushing through that exhaustion to crash afterwards and still not manage much. Now it is going to be even worse. Trying to increase exercises is painful for a body that is weakened, yet I will not be able to even take the pain relief to help me to manage to make any improvements.

I have tried everything. I have been to pain management clinics, where the doctor has said there is nothing that they can do, I have had CBT where the therapist has said that I have a very positive outlook considering my pain and there is little more they can do to help me cope. I have had acupuncture and although it provided short term relief, my pain was back within a day of treatment.

“We don’t take pain relief for the fun of it.”

Drugs are not the only answer. I get that they can cause addictions, I get that they can cause long term problems. But being in chronic pain can also cause long term issues. From the news article that I read, antidepressants can be prescribed instead. That is not an answer. It does not cure the pain and can be just as dangerous as any opioids. I say this from experience; I was put on an antidepressant called amitriptaline to provide pain relief and ended up on a heart monitor with an extremely irregular heartbeat due to it.

We don’t take pain relief for the fun of it. I hate having to take medication but at times it is my only option. I take it as my last resort when I have exhausted all other options.

“Pain is not black and white.”

I have been on both sides, I have felt brain fogged due to the large cocktail of medication I was taking, but I have also gone without any and have felt clearer in my cognitive function. But I have moments like today when the suffering is too much. I can’t be hugged because the pain is so intense, and I have to make decisions as to whether I can go to the bathroom or not because it would be too painful to get there, even in a wheelchair.

Pain is not black and white; we all have different tolerances and experiences. I accept that. I want there to be other ways to go forwards; I don’t want to be taken a mini pharmacy everyday.

But the treatment in the medical world is degrading. How can a committee make decisions about my chronic pain when they do not suffer like I do? How can my pain be diminished as “all in the mind” to be treated by antidepressants?

As I have said, pain relief is a last resort for me. What happens when that can no longer be that? What is NICE suggesting you do when people reach the end of their tether with pain they are in?

I need to hear answers from representatives. I need to hear hope and reassurance from the medical world that they are going to find a better treatment and that they will do research. Because right now, I feel isolated and terrified of what happens when I have no last resort.