Its been a year since iv been able to post. Illness & lack of a laptop being the biggest things.
I have now wrapped my head around using my android phone & have a journey id like to share.
I aaw that people in the USA where getting Lidocaine to treat illnesses like Fibromyalgia. I began to look into this here in the UK.
My 1st stop my gp's who referred me to a pain management consultant. The wait to see this consultant 6 mths.
Finally I was here, I flew the psychological tests & was told yes we agree your depression which is currently being treated with 40mg fluoxetine was caused from being in constant pain.
The consultant asked what he could do for me. I replied I want to try lidocaine injections. We talked about the difference between injections & intravenous infusion as I also have a condition Dercums Disease.
The difference is injections into trigger points are good for fibro because the lidocaine works on the muscles. Whereas for dercums which lives under the skins surface in fat cells (basic explanation) is better treated with infusion.
My consultant only knew of 1 consultant that did it & referred me. I had a 3mth wait to see the next consultant.
At this apppintment the consultant spent a while talking to me & explained the dercums is the more painful condition so he is willing to try intravenous lidocaine.
My next appointment for treatment was 3mths after that. I sat in the chair with a drip attatched, finally I was here.
I dont know what I was expexting to feel but other than a slight ache in the back of my hand from the canula I didnt have a euphoric moment.
I took to the treatment well 400mg through saline drip. No numbness, tingling or any signs of dropping blood pressure. My body coping I did the minimum amount of time 90mins.
I felt midly light headed for 15mins after the treatment ended but other than that all was well & I was told id be able to go home.
So determined was I to get off the morphine & oramorph, that night I went cold turkey. No point recalling the next 3 days pain wise as I was in withdrawl.
My gp had given me dihydracodeine to make withdrawl easier. Id been on it for 10yrs until 2yrs ago. As withdrawl faded I started to notice small things.
The pain that had lived under my skin like a lava lake was gone, the sensation in my heels of walking on broken glass, gone. The pain deep in my trunk bones, gone. Myofacial pain, gone. The pain in the rest of my body halved.
I felt like I had stepped back in time pain wise. The pain in my left hip used to wake me every night more than once, it hasnt woken me since. Walking was totally unbearable as it racked my whole body with pain.
If I walked it was with a stick slower than a snail, now im taking baby steps with no stick. Im 3 inches taller when I walk now as I no longer stoop & sway under the pain.
Its not that I dont know there is something going on in my body. I can feel the 'sensations of pain, its juat not the living breathing monster it was that kept me bed bound for months at a time.
It had subsided somehow, unfortunately not enough to be morphine free as id wished but it has made a huge difference. I no longer take 30mls of Oramorph & 60mg of Morphine Sulphate daily. Im on juat 30mg of Morphine Sulphate daily, thats less than half the amount, I can live with that.
Id found on the dihydracodeine the pain in my shoulders was off the scale making breathing very painful. As I have to breathe to survive I agreed not to be to pig headed about taking the lower dose of morphine.
Combined with the Lyrica, Zolpidem, Fluoxetine & Paracetamol the morphine I am on combined with the lidocaine, I am in less than 80% of the pain I was in.
I had reached points not where I felt suicidal but knew dead would be kinder to me. I no longer feel that way. To breathe without my breast bone feeling as if its splitting into 2. Wear almost any material without it hurting my skin. Have hypergelasial pain return to normal, allodynia to nearly dissappear.
The doctors dont know how long the lidocaine will last for, they dont know if it will build up in my body giving me longer times inbetween treatments. What we do know is its worked.
I have agreed to be a guinea pig for the pain management team & anasthetics. They have said it will take up to a year to make me stable because they need to learn from me. I have no problem with it.
What I want to do is advocate for people living with painful conditions like mine, because if we are pain free, we can better care for ourselves, be less of a burdon. More people would be able to work, less sick days for those that are holding down jobs.
People with these painful conditions would have less mental health problems. The suicide rate would drop, because what most people with these painful conditions crave is some of their normality back, being in a lot less pain would do that.
I urge patients to speak to their doctors & consultants about lidocaine as a treatment option. It is available you just need to know what to ask for.
I know it wont work for everyone but by the bloody hell it would help the majority.