An intro of myself.

[painismysecondname]

Hi everyone!

I have been a "ghost" member for over a year now, and I decided, as part of my New Years resolutions, to try not to be so introspective. So here I am;

Aged 53, used to work in middle management in the NHS, now unemployed due to illness. Type 1 Diabetic for 49 years, with glaucoma, neuropathy, gastropareisis and a touch of arthritis in my knees. On a host of medications including Pregabalin, Tegretol, Duloxcetin and Nortryptiline, and yet my extremities feel like they are in a vat of hot oil, 24/7. The soles of my feet feel as if I'm walking barefooted on a sharp pebbled beach, and my balance, let's just say I'm great at falling! My hands!!! Red, slightly swollen, numb and painful at the same time, hurts to touch anything most days, including food. Unfortunately, to the untrained eye, both hands and feet appear normal, so at first, found myself having to justify my unemployment. Luckily, I've since had a nerve conduction test, which showed both small and large fibre neuropathy on all four limbs.

Pain Clinic not much good as they appear to have given up on me; last time I went, I was discharged and told to practice mindfulness meditation, which I already do anyway. My GP is wonderful, but limited in the amount of help he can offer me as some of the medications have to be prescribed by the pain clinic, who keep suggesting that I try mindfulness meditation. I am not looking for sympathy, just understanding with other people who might be in the same boat as me, people who've lost their livelihoods, their friends and partners to an illness they did not ask to have.

So, come on fellow sufferers, tell me about yourselves.

[Hidden]

Hi there, my god you poor thing your going through so much, do you have a good support system around you to help you get through this? Have you asked your doctor to refer you to another pain clinic in your area if you have one or a different pain doctor? I think there might be a chronic pain team as well but not sure if that’s everywhere?

I’m becki I’m 27 got a beautiful 3 year old and for the last 2 years I’ve got extreme hip and thigh pain that’s made me pretty much bed bound and on a crazy amount of painkillers which makes me more dolaly than I was before. I’ve been passed around from awful doctor to awful doctor for so long but today I finally go somewhere with it.

I’ve found it’s all about constantly going on at your GP to find you the right help outside of them as unfortunately they really aren’t equipped or have to knowledge to deal with things like this, my mum is a nurse and if she hadn’t come with me to my last GP appointment and told my doctor what to do he wouldn’t of ever even thought about it.

Don’t let them give up on you you shouldn’t have to live in pain and not be heard it’s your body and when it comes to things like this we know our body better than they do! Xx

[painismysecondname in reply to Hidden]

Thanks bexamy.

You're not having a restful time of it yourself, are you.

I was a nurse for 4 years, and a midwife for 22 years, and yet I cannot negotiate my way around the NHS any more. It's like everything's changed in the 8 years I've been out of work, and hurdles have been placed between us and the effective treatment of our ailments!. One of the main reasons for my inability to get anywhere with the Pain Clinic is that the one I usually go to is situated right in the bowels of the Churchill Hospital, which takes me half an hour to get to on foot with 2 crutches (it takes my son 5 minuets to get there from the car, when he collects me). . By the time I get there, I am in so much pain I'm nearly in tears, and so I do not behave assertively when I feel I'm not being listened to, as I do not want to start crying in front of strangers. I think another reason for the poor response from the Pain Clinic is that I have a very high pain threshold, and would simply say it hurts, rather than make a meal of it. I had c sections for both my kids, and each time I was up within 2 hours. and did not request any analgesia.Other patients thought I had had normal deliveries both times.

I usually go to the Pain Clinic appointments, listen to their excuses, drag myself to my car, close the door, put my head down and howl like a baby.

I have started using CBD oil orally, but I've yet to feel any let up in the pain. I am seriously debating whether to try dope, but I spent 3 years smoking it at Uni and don't want to go that way again.

I am aware that I am being failed by the NHS, but having to fight for treatment when suffering from unremitting pain makes life just a little bit harder to cope with.

[Hidden in reply to painismysecondname]

In hospital they have wheelschairs, when you go in ask for a porter to take you, I can’t walk more than 5 metres on 2 crutches and if I go to hospital appointments and thing the first thing I have is a wheelchair to get me there lol

Yeah the NHS seem to not really care or understand about chronic pain and sometimes all we need is someone to truly listen to us and at least understand a little of what we go through.

I have hospitals and horder centres near me and they both have pain clinics in them I’m not sure where abouts you live but might be worth looking into? My pain clinic is over N.a. hour away from me but I get hospital transportation there and back and they can provide wheelchairs to get you around etc.

I was smokin weed until a few months ago and it really really helped however it’s not ideal an extremely hard to get hold of plus with having a young son I hated doing it, I haven’t tried he oils just as they are so expensive and a lot of people have said if you’ve smoked weed in the past it just won’t do a lot for you. It’s frustrating as I can’t take and ibruprfen or naproxen as it makes me very ill so I have nothing to stop the swelling or spasms.

It’s just so frustrating being stuck like this but I’ve got to hope that hopefully I’ve finally found a good consultant who really does care and wants to help make my life just that little bit easier for me lol it’s all about finding the right doctor I think.

I hope you find something and someone soon xx

[Hidden in reply to painismysecondname]

I completely understand you not wanting to make a meal out of your pain but sometimes they need to hear the raw truth of what your going through. They hear the word pain and think of things like hurting they toe stubbing it on a door or getting stomach ache and things when in reality it’s so much worse than that. Have you asked to see a different doctor at the pain team or the main consultant there? One who has a lot of experience and who seems to care about their patients.

That’s half our battle , people who work in the care industry really need to learn to care a bit more and learn to listenx

[Tracie4]

Hi. I also have multiple issues going on, however, diabetes, thankfully, is not one of them. I do have a major problem with portion control and a sweet tooth. Lol. I quit smoking in Aug. Trying to improve my health. Weight loss has been a big challenge. But I know in my heart that loosing weight will take a a lot off of my joints. (I have moderate degenerative arthritis throughout my body). I just want to feel better and enjoy my family.

[painismysecondname in reply to Tracie4]

The first step to solving a problem is identifying it.You have done that by stating that you have issues with portion control. You sound very positive and upbeat.People like you are a joy to have around.I pray that you lose the weight and enjoy a better family life. God bless!

[Tracie4 in reply to painismysecondname]

Thank you for the encouragement. I really appreciate it