New here, living with cronic pain, pain clinic say i have to learn to live with it, Degenerative spine disease

[Blackdognell]

Seem to have run out of options with the pain clinic, i have prescribed for me, paracetamol, dihydrocodine, naproxen, lyrica 300mg, morphine (as needed), citelapram (antidepressant ) for pain and because of depression caused. Have had spinal fussion on lower spine, 11yrs ago, now even more pain is caused above fussion site, different areas of the spine are also affected by pain. Pain clinic has discharged me saying i have to learn to live with the pain, cann't live like this, ,i'm only 53 and feel very old , tired, and can't function ,

[angybaby]

Hi, I sit here reading your probs & you remind me of myself.Other people seem to know everything about their disability but it doesn't help when you are in constant pain & dismissed by docs. I have similar to you & take medications like yours except the morphine, I turned that down, I wanted to keep my mind clear, but I'm thinking that perhaps that might be better than this constant pain.I also feel very down & tired, I have a husband but even they get a bit tired of the constant complaints of pain. I don't go out, have wheelchair & small elec. scooter but nowhere to go..Hubby has taken up the gym 3-4 times a week, don't blame him really..We are retired which makes it worse. I think all my muscles are wasting away now, hurts to go from one room to another. I sleep a lot of the time, dose myself up & out of it for a couple of hours..Oh dear I do sound pathetic, I was just hoping to let you know you are not alone.

[lowlife]

That's what they said to me and yes I feel so old. I was 56 when I had back injury and could no longer work. The only way I can sort of manage my pain is sit when I need to sit and stand when I've had enough of standing etc in other words listen to your body. I do stretches but that's about it. I do all house work eventually but have to keep stopping for a rest but it all gets done in the end. Try not to be too hard on yourself and focus on anything to keep your mind off the pain. The more stressed you get the more the pain will get worse so take things a day at a time x

[RAYJAYC]

Hi Blackdognell

I have DDD and all that goes with it! (Im 44). A few things I have learnt;

1. Movement is imperative!! Even if it's only slow stretches or walking up & down the garden every day (I'm on two crutches with a leg splint for foot drop). Not moving your body makes it seize up thus you feel more pain and feel you can't move! I know it's hard, it's taken me 7 years to believe the doctors & physio but doing nothing leads to you not being able to do anything!

2. Medication reviews are really important. What do you take regularly and what do you take 'as required'? Are you taking meds that usually are prescribed 'as required' regularly or all the time? Be brave and working alongside your GP reduce one or two to eventually zero. By stopping some meds, when you start to take them again, the effect is reinstated and you get some relief. Honestly, this happens - when we take med after med after med (the ones that are supposed to be only as required) they stop working.

3. Distraction - meditation, either silent or to some soothing music. (I find the most comfortable position possible and do this regularly). Art or craft type activities? Adult colouring books?Massage? Yoga? Pilates? Nothing major but SOMETHING specific set aside during the day or week that eventually becomes a natural pain management technique.

4. The most valuable thing; pacing!! Pace each & every activity - from getting out of bed in the morning. Stick to it and don't let anything deviate you (unless it's an emergency obviously!! 😊) from it! Don't 'beat yourself up' about little things like some housework that doesn't get done either!!

I'm no expert and I may be telling you stuff you've already heard but sometimes, hearing it from someone who knows what it's like rather than a nurse, doctor, physio, consultant etc can be easier to take!!

RJC x

[Steve_inpaintoolong in reply to RAYJAYC]

Hey RJC,

Spot on with the rehabilitation route.

You have to keep moving and exercising otherwise your going to waste away.

Even a minimal muscle stretch at first, pushing yourself to walk. ... its very important.

And you just have to keep your heart working... either through any short viggerous exercise.... yes even that.... :o)

It is hard.... and its easy to preach... I often spend days curled up in a ball on the settee.. . But if the pain eases I'd rather experience pain though exercise rather that it having no obvious cause.

Anything is better than nothing.

Steve.

[glenn1888]

I know the feeling I am 52 first time I have ever felt my age is last 3 months pain is off the charts, been in pain for 14 years but it was 1 or 2 days a week for some reason its suddenly everyday and nearly all day Pain clinic is a joke try to distract yourself from the pain, thats like someone hitting your hand with a hammer and say blank it out it doesnt work like that ffs

[oldman1952]

Hi there Blackdognell, is she a Lab? If that is what you have it is fabulous. They give unconditional love and have big ears and shoulders that can hear you and understand how you are feeling.

I like all the posts so far but both JAYC and Steve stand out because you have your illness and you know what helps you and what does not. JAYC and Steve see outside of the box. Now it is your turn to start to look at the outside instead of hiding away in the box.

Nothing in this world comes too us, we have to set our self goals and work towards these goals slowly. Your illness painful as it is you have to start reviewing how you are at this moment in time. You cannot change the past because it has passed, start living for now and plan for the future, a future that is as pain free as possible.

You are in constant severe pain, that is not in dispute. What is as I can see is that your immediate family need you to try and change. Try to understand what they are going through at the moment, try to understand how they must be feeling having you a loved one in so much pain and they are helpless to do anything for you. Apart from doing the maternal things that you did for them when you were well. Have a go at something that you have never done to help you reduce the pain in your hands. Ask hubby to get some candle wax from the craft shop, it comes in blocks. Get him to warm it up and if you have one of those slow cookers and you do not use it any more. It can be a god send. Once it has heated up to a warm constant heat when melted, ensure that it is not too hot for you to touch. Place one hand in the bowl of the cooker, then the other. Gently allow your fingers to move around in the wax for about 15-20 minutes, squeeze it through your fingers, feel the warmth taking away the pain and talk to yourself at the same time that the feeling of the hot wax is something soothing that the pain will slowly become less of a pain and is more of a pleasure. Your nerve endings need to be retrained. For many years all the ending have known is pain, teach them that the pain is no longer a nuisance and when your hands are in the wax this is what you want to feel. You train your mind that your hands are always in that lovely warm wax, even though it's not.

Slowly detoxing from medication is a really good thing to start to do with the help of your GP, practice nurse and pharmacist. Have a meeting with all 3 of them together, that way they can see that you are trying to overcome this nasty painful disease.

Lastly as I said in a few paragraphs ago, think about what you are saying to family members as they might be frustrated and eventually have a reduced feeling for what you are saying to them. That is the negative part of depression. Sometimes keep your negative illness symptoms to yourself. Trust me I have been there got the T shirt and a divorce to boot.

I do not beat about the bush, I will tell you how I see it, because for some time now your illness has taken up all your time. You hate it, why me, why not someone else. If you were to slightly change a little piece of your condition what would it be? Think about it then plan how you would start to do it. Don't make the change too hard or you will not succeed and feel even more of a failure. If you reach a sensible goal it would do your self esteem and self worth a great deal of confidence. Good luck and I hope that you understand where I am coming from. Nice to have a refreshing problem to post to. Oldman1952

[Hermes123]

Hermes123. Sorry to hear this? but I'm in the same boat I have been living with it for

50. years, so many operations and a lot more needed, but how dose one prioritise and how much can one take. Recently I had a wrist and elbow op, as a result I am feeling quiet down its not the operation, but more pain on top of more pain and it never seems to end, I have severe head aches and migraine cannot think clearly, normally I can pull myself out of these situations but there is times when it all gets to much, the trouble is I am able bodied but it's what's going on inside that nobody see's.

[Hermes123]

Hermes123. I should quantify able bodied in my last reply? meaning I appear OK but really I feel broken inside due to all my joints have gone, I had at lest six operations to date and need at least need that many again. I use a walking stick for my hips and need it to get me up from the sitting position with a struggle, I don't think I could face any more operations.

Certainly not in my present state just so exhausted.

[oldman1952]

Hi Blackdognell, you have come to the end of the analgesic line do not despair. Doctors even pain specialists get a little stuck with their protocols and thinking. Just because a patient fails to respond to all analgesics known to man we have got to think why. Some patients have high pain thresholds and others have low pain thresholds. However think about this for one moment what if a person has a high pain threshold and the analgesic stops being affective what do we do. Apart from all the old treatments of steroids to reduce the inflammation and spinal blocks, there is one analgesic that in small trial doses can work quite well as an analgesic for analgesic resistant patients and that is Ketamin. Oldman1952