CHRONIC PAIN- accepting your diagnosis.

[picklemewalnuts]

I'm sure I'm not alone- I was diagnosed with Fibromyalgia when my thyroxine, vit D, Iron, Vit B etc were all ruled acceptable but my pain and tiredness remained.

I keep hoping I'll find the missing nutrient, sort out HRT, discover a trigger... and be well again!

I also comb my history to try and pin down when it started.
I head off down rabbit holes about multiple chemical sensitivity etc.

Anyone else want a chinwag about accepting your diagnosis?

I work one day for a corporate client spread over the week, I run an etsy business, my family business and I do blogging and voluntary bits. I need to work. I'm so worried if I stop staying busy I'll slump into a depression. I am in pain all the time but sometimes it I'm focused enough on a task I can switch it off. For me it's a coping technique.

I'm active with voluntary interests/responsibilities, but I want to give them up to leave me more capacity for my own interests and for work.

RE: Work I had a Very Important Job for 17 years, was bullied out of it, went self employed, had my child, split up with her father. He took little responsibility so all of a sudden I had to fit in school runs. Retrained as a Sports Therapist. That eventually became difficult after arthritis diagnosis. Got a job in a supermarket. Way below my usual pay level and expertise (no judgement there to supermarket workers, but a simple fact for me) eventually had to leave that last year due to not being able to cope with pain, caring for my Mum with cancer and knowing home schooling would have to take priority. Total mess really. Started an Etsy business when DD was in school Sept to Dec. Paused during recent lockdown, but hoping to restart again now. Feeling crap and useless. I know that extended family and friends think that I'm free loading and probably getting loads of benefits. I get a bit of tax credits. It. Is. Shit.

For me it has been getting on a medication that works. Now feel much more motivated about doing and have energy for the other stuff that helps, diet, exercise etc. and willing to look at ways of managing the worse side effects and symptoms. Keep meaning to write a list - what I have lost and what I can do.

I posted most of this on another thread, so apologies for the cut and paste job. Acceptance is a huge thing in living with pain. I think our level of acceptance can vary day to day. Personally I think that knowledge is key to accepting. How can you accept something you don’t understand?

Our understanding of chronic pain has changed massively over recent years. The pain that you feel is absolutely real. We know that our bodies produce pain as a way of keeping us safe. If you stick your hand in a fire, our body interprets that as painful to stop us from doing it again because it damages our body. It hurts whilst it’s healing too, in part to make us protect that area whilst it’s fragile. The weird thing about pain is that we have no pain sensors, it’s how our brain interprets signals that produce pain. In chronic pain conditions the sensitivity level of what produces a pain response is turned up, so things that shouldn’t be painful are.

There’s a famous medical case of a builder who stood on a nail and it came right through his foot and out of the top of his boot. Understandably he was in agony and was given heavy duty pain relief. In hospital however, they discovered that the nail had gone up between his toes and he wasn’t injured at all. Because his brain processed the nail being stood on and coming out of the top of his foot as meaning it had gone right through his foot it produced pain!

We also know that there seems to be a link between emotional trauma and chronic pain. Not entirely understood but we know the same part of our brain feels emotional and physical pain. They did whizzy brain scans and poked people with something sharp and saw which bits of their brain were active. They people they did this with had also recently had a nasty relationship breakup. When they asked them to think about the breakup the same bits of their brain lit up. Notice I’m talking about comparisons in the same person here, no one has identified one single bit of the brain that deals with pain, we think it’s lots of bits that interact with each other and vary by person. You can’t do a brain scan that shows someone is in pain. Equally, X-rays and scans don’t show pain. They’re used to exclude dangerous things such as tumours, compression of the spinal cord that causes paralysis if not operated on, fractures etc. If you did an MRI of the spine of everyone in your road there would probably be something “of note” on 99% of them, but looking at the scans you wouldn’t be able to predict who was in pain.

We now think that chronic pain is caused by a sensitised central nervous system. This means that there has been a change in it (neuroplasticity) which means that potentially it can be unlearnt or retrained.

There’s some really good resources on these websites.
www.flippinpain.co.uk/
my.livewellwithpain.co.uk/

Forgot to add, your pain is absolutely real. You are not making it up or imagining it. Making small gradual changes is key. You can live well despite having pain. We need to start educating the general public about what pain is and how we can help people live well with pain.

I’ve had chronic pain for over 15 years and work in pain management. 95% of the time I accept my pain. The other 5% is rubbish though!