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My top 5 ways to cope with chronic pain

notebooksandglasses

Alice shares her advice of living with chronic pain, as well as how she stays positive and continues to do the things she enjoys

I'm Alice (Ali). I live in the north west of England with my partner and my two Westies. My blog Notebooks and Glasses is about living a positive life with chronic pain: my words and observations. I give real advice and tips and share experiences of staying positive despite having chronic pain. Through my blog I hope to encourage others to not let their pain stop them doing the things they enjoy.

I’ve had chronic pain since 2012. I’ve got a sitting disability, which means that when I sit down I am in pain. I have no diagnosis, and despite having my coccyx removed (my consultant thought it was dislocated in two places) my pain did not improve. In fact, since my operation in 2015, I suffer from neck pain too. My physiotherapist says this is caused by my 6 years of abnormal sitting, which has caused damage to my spine. Literally, by avoiding one pain I have caused another.

Everyone’s pain is different and everyone copes in different ways. I have had to learn ways to cope with my chronic pain rather than fight it and question why I’ve got it. Below are my top 5 tips to help others cope with chronic pain.

1. ACCEPT YOUR PAIN

This can be difficult, but accepting your pain and changing your mindset about how you think about your pain is the first step. My mindset changed after I had my surgery to remove my coccyx. I knew it was my last hope and was willing to give it a try to see if it would work. I also knew that if the surgery didn’t work, then I had to accept things for what they are and learn to find ways to cope with having chronic pain for the rest of my life. Since my mindset changed to accept my pain, I have been so much more positive and coped much better. It means I am putting my energy in to the right things.

2. FOCUS ON WHAT YOU CAN DO, NOT ON WHAT YOU CAN’T

It is so important to focus on the positives, and the things you can do. When we focus on what we can’t do we dwell on the barriers in place and struggle to find solutions. This is something I learnt to do when I was getting workplace adjustments put in place at work. The focus was always on what I couldn’t do rather than looking at what I could do. When we switched our focus, everything got sorted much quicker and I got the adjustments I needed.

3. WRITE DOWN THE POSITIVES

Write down one thing each day that makes you happy or that you are grateful for. It doesn’t seem much at the time, but at the end of the year you will have 365 things to look back on and remember. This is another way to help us focus on the good stuff. It’s all too easy to focus on the bad things in life or the things that go wrong. And writing things down in this way can also help us remember things that have happened, a bit like keeping a diary, but it doesn’t take too much effort.

4. CONNECT WITH THOSE WHO UNDERSTAND

Search for local or online support groups to connect with other people who will understand your pain and what you are going through. Knowing there is someone out there who ‘gets it’ is really motivating and encouraging and makes you feel like you’re not alone.

5. TREAT YOURSELF

Having chronic pain is tough and we all deserve a treat from time to time. It can be big or small, something to have right now, or to look forward to in the future. Buy yourself a new book, go out for a coffee, plan a holiday or a date night with a loved one or a night out with friends. Doing something for you will make you feel a whole lot better.

What can you do to help cope better with your pain? What tips do you have for others?

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Comments

feir

I agree accepting your pain does make it easier. Like i understand this is a part of my life now and it's unlikely to go away. I'm not happy about that but have found ways to make my life easier because of accepting it instead of trying to carry on as normal. Right now feeling helpless is my main cause of depression and my pain is not. I do think high levels pain you can never develop a tolerance to though, it actually feels worse and more unbearable the longer it goes on, so i dunno if this type of thinking would work here. Luckily i discovered not moving eases my pain, i'm very immobile now but at least my pain level is down and i can't hardly walk anyway so saving that for special occasions like going to the toilet on my own lol.

Don't really have any tips except maybe in my case i found mindfulness to be helpful because it helped me to focus on what my body was feeling, so in turn i became more aware of what was making me worse. Again though if you're pain levels are high i really don't think this would help.

Topkitten

I guess I am a little different to most as I can completely control my pain and it isn't random at all. I fully understand it and accept that I will have to suffer it and have tried to find the best way to cope. It is difficult to pinpoint exactly when it began as it is a combination of two different spinal problems, one in the cervical spine and the other in the lumbar and thoracic. I suppose the initial cervical problem showed itself in 2003 and was rectified and cured in 2005 though has returned again 4 years ago and now seems permanent. What has crippled me though is the latter problem which was first found to be causing pain in 2006 and is progressive. Initially in 2006 being two discs in trouble to the last MRI showing 7 or 8 in both lumbar and thoracic as it gradually progresses up the spine.

I agree with the comments regarding mindfulness and it is probably the most important thing of all. Always adjust as quickly as possible and always move and alter movement to minimise the suffering. There is something else which is the highest importance though. I cannot explain how any particular person can do it but there is always a way. Learn to ignore the pain! It takes time and is slow to get used to but it is evidently possible. I know for a fact that each of my discs generates pain levels equal to a slipped disc (even though that is not what has happened) and for people unused to pain it is a complete show stopper, they simply stop walking when the pain starts. What I did, do and always have done is to get used to the pain level and counter the pain which prevents me doing what I insist on still doing, even if I do it less. In my case that is walking and moving about to keep a minimum level of mobility. At times this has meant walking with pain levels of 6 or 7 out of 10 with spikes up to 9 but I have, at each increase, slowly adapted to the new pain levels and fought hard for appropriate medication.

Although things have now changed a little because I am at the limits of allowable medication and my movement is minimal I simply rest more to recover in between exertions. Learning how to relax and recover is the second most important thing to learn because you simply must have a way to recover when needed.

I know for a fact that if I go to bed and stay there my pain will completely disappear and also that it would take a week to happen but that is not a life I can accept EVER. I will always walk a few steps when I can and will never stop no matter how much it hurts. I will simply (or maybe not so simply) adapt to allow myself to do it and learn to accept the pain.

I am having a hard time right now and it has taken much longer than my usual 2 weeks to adapt because I am also having to come to terms with my GP not telling me until too late about increasing the meds no further and consequently for me not being able to be ready beforehand. This has probably cost me my last year of properly walking indoors and still going out. By the time I get moved into wheelchair accessible accommodation so that I can rest sufficiently my left leg will be as painful as my right to walk on. This year I could have still gone out walking a little, next year I will be permanently in a wheelchair except for controlled and minimal amounts indoors. It is hard for me not to be saddened by this loss as I will never get it back and my last mobile year has been taken from me. The effect this has had on my mental health is atrocious and has left me unable to fight properly to get some of it back. Had I someone else around things would have been different because I would have been able to fight in order to be still able to look after them. Maybe that sounds daft but it's how I am.

I hope I haven't waffled too much and people reading this understand me ok. I guess the simplest way to describe how I am now is this. I can sit and sleep in a recliner chair in minimal pain (around level 1 or 2). When I get up and go to the toilet or get food or drink or answer the door I can walk 2 or 3 paces (limping badly) and the pain surge makes my right leg feel like it is burning red hot (around level 5 or 6). Every step thereafter increases the pain until after about 10 paces my leg is burning white hot and it tops out (around level (8 or 9). It is agony every time I put any weight on my fight leg but I continue to do so and each step gets a little easier as I get used to it. I make no sound and pull no faces and simply keep going until finished what I need to do. I will not let it stop me. The only time I do is when it changes and something new happens. Sciatica doesn't stop me unless it is a large bundle of nerves rather than the single nerve that stops most sufferers. Also, and I have no idea how, I ignore most of the worst pain.... I simply refuse to feel it. I suppose that means I increase it until it overloads my capacity to feel it, if that sounds possible.

There is something I have begun to understand though. If you are in a lot of pain, the more you allow yourself to acknowledge it the more it hurts. Crying, shouting, screaming or stopping and thinking about it makes it hurt more. Why this happens I do not know but what I do know is that if you refuse to acknowledge the pain it hurts less and you can keep going or recover from a spasm or just do what you have to do. Adrenalin is a part of it certainly and so is the bodies natural production of endorphins to counteract pain. I think that because I have slowly forced my body to produce more of both by not giving in it is now capable of generating much more of each than I would ever have thought possible and, from their responses, much more than doctors think is possible too. I know it is possible for others to see when I do this as my face turns white and I sweat and people that know me well can see it happening. I think they actually find it amazing that I do so but to me it is simple.... I just will not give in to pain and I will do what I must do.

TK

samparrot123

I find that living with chronic pain is very difficult,but what I have found is that you must listen to your body ,some days I just can't seem to get going and I've now learnt that when I feel like that I have a lazy day,I mean not lying in bed all day but put off what I have planned for that day,some days I feel so exhausted that I just feel like having a sleep for an hour so I do,and I think one very important thing I've learnt is on a good day I still take my medication,it can be very tempting to leave off my medication BUT you will suffer the next day,I hope my input will help somebody if only a little?

JadeB

I have found this post very helpful. I have had chronic pain for the last 18 months and only now am I coming close to a possible diagnosis. I also have mild cerebral palsy, and have experienced pain due to this on and off throughout my life. But. Know doctors think I may also have fibromyalgia. I have a constant global body ache. On so e days it’s low enough that I may not really notice. But on other days it can be really bad and I always get headaches, and feel very fatigued. Accepting it can be very difficult, especially when it comes with a decline in mobility.

Waylay

At the pain management programme I attended, the psychologist suggested one day that instead of treating the pain as an enemy, I treat it as a sulky little kitten who wanted attention. That has changed how I deal with everything.

Circe

Hello all, I've had chronic pain for 4 years of varying degrees. Currently I'm suffering quiet bad and are wait g on MRI results for further information on my condition. I have two appointments with GPS pending this month. I have a spinal curvature (Hyperlordosis) & (Spinal Stenosis). Moving isn't good, pain meds not effective and I consider myself a positive person. However, I find that being in constant pain often pees on a lot of my enjoyment of things. Take last night, I'd had a week of high pain , just returned to work after a holiday and was put on two different departments because we are always on low staffing levels. I was in more pain because of this, I felt grumpy and did consider leaving work and telling them to shove it. Instead I left the one department and went back to my own. I'm meeting the HR tommorow to discuss the lack of help I'm getting and disregard for my condition. So after a nightmare shift I went home looking forward to seeing my boyfriend. As soon as I sat down, stopped moving I had a wave of exhaustion wash over me. My boyfriend appeared, wanting to go out for an hour, I had to refuse because of pain levels. The first time I've actually conceded to the fact I'd ran out of spoons and my body just wanted to stay still. Said boyfriend was OK about this but was disappointed. I don't thi K he actually realises what it is have and what effect it causes me. I did try to explain but I don't think he really got it. Should I print of info for him about the conditions I have or would that be patronising? I think often even when you say to folk what chronic pain is they just under rate its true nature and effect of it. Should I print off info for work too? I don't want to be seen as a needy, unfunctional human just some consideration and understanding about the invisible disability I happen to have. Thoughts?

Circe

I've since spoke to my HR and for a change I think things will change, it's a new HR so time will tell, I'm positive though so will watch and wait. I've sent out Scope flyers at work hoping that those in need of guidance get help and get some positively themselves. On the boyfriend front I've had a chat and we've both come to the conclusion I need to share more regarding condition and how it effects me as I do tend to play it down because I don't want to admit I'm a knackered crone lol I'm using crone as a positive word as I'm a Pagan and Crone is seen as the Wise Woman of the tribe. I do struggle with frustration with myself and asking for help when I need it and admitting that I do need help at times, as an independent lady this is difficult for me to accept but I'm sure one day I will get the balance right of independence and support from folk.

Topkitten

I think it is impossible for people to truly understand pain unless they have experienced it themselves @Circe. The simple fact is that we all judge pain by what we have suffered and, for the majority of people the worse they know is headaches or toothache. The higher you go with pain levels the fewer have suffered them so fewer can appreciate the difference. My eldest daughter came along to a session I had with the Pain Clinic and it helped for a while but it has been so many years since then and my pain has risen and her knowledge has drifted away, as memories do. So once again she doesn't have any idea of how bad it is. Even people who have had a serious injury or illness that caused a lot of pain cannot really understand because basically the majority of the population sees pain as something to be got rid of and will never perceive the truth, that for a few it never does.

TK

Circe

yes, that's true we take things for granted and its only when we lose them do we see there worth. I'm now trying to communicate what I am feeling and what my level of pain is without moaning, well I hope I am as I listen to myself at times and think shut up. Communication is key, it's also me not wanting to ask for help too as I feel I shouldn't need it at my age and that there are folk worse off than me

Topkitten

One thing I have noticed @Circe is that now I have been suffering so long I never make a lot of noise any more except for the occasional swear word that slips out when I move wrong or too quickly or forget and put my heel on the floor. It's odd really because I seem to remember making a lot of noise about pain before the problems began or for the first few years.

I suppose that there must be people worse off but being on max dosages of 2 opiates and still in pain it seems unlikely. However, without much outside contact I have lost that contact that made me appreciate others problems better and I get completely wrapped up in my own.

TK

Circe

it is hard to think outside of the pain and the new limitations it gives you, that's
for sure

Topkitten

@Sam_A, it certainly affects everything we do or did and it's always most unwelcome. The medication problem can only be gotten through by noting down the pain killers that give you issues. I'm not sure whether you mean an allergic reaction or bad side-effects, it would depend on how you reacted certainly almost all give side-effects of one sort or another and it depends whether you can find a way of coping with them.

I suffer dry mouth constantly and have found a way to deal with it. The nightmares I simply put up with despite having terrible feelings when I wake up sweating and fearful. Hot and cold sweats are harder to bear but the considerable pain is worse. I do balance 2 of the pain killers to reduce the nightmares. However, some of the pain killers knock me out for as much as 20 hours a day so I take minimum dosages. Overall I suffer more pain than I am supposed to and, at times, too much to keep going but I plan my days as best as I can to try to keep going. We do what we have to and if I didn't put up with the side-effects and took no pain killers then I would be in bed 24/7 and never be able to get out of it.

Pain itself, in a way, is a side-effect to be coped with and I push myself to do as much as I can within the limits of the pain. Maybe it isn't much of a life by most people's standards but, I am told, it is better to live than give up.

TK

Circe

I've finally had my results I have a prolapsed disc now on top of the normal two chronic spinal conditions so this explains the boost in pain I have been feeling. I'm now waiting for a referral to an orthopedic surgeon so I feel that finally I am being listened too and not just given meds and sent on my merry way. I am now on sick from work, Any movement is extremely painful.; Advice from Dr was carry on with normal activities, well my normal isn't normal whatever that means so I will be limiting a limited activity life it seems while I deal with this new health issue.

I am still popping higher dosage pills but not doing a fat lot. I know painkillers are just plastering over the problem but like TK said if I didn't take them I don't think iI would be out of my bed and function at all.

So what I think I am saying is do what you need to do too have some quality of life, be that pill popping, resting when your body has had enough and taking time out for your soul recuperation.

Topkitten

@Circe, prolapse can be very painful, it depends on where it is and whether it prolapsed in or out, I suspect out which is by far the most common. A prolapse in the cervical region requires a very good neurosurgeon but can be done with microsurgery. If you want to research that it's called Anterior Cervical Discectomy and fusion as fusion is the most likely option within the NHS. It's what I had for an inside rupture in 2005, the only downside is that there are very few surgeons qualified for it in the UK. However, if the disc is lower down then the risks increase and the surgery becomes less likely and depends on the impact to your life IN ISOLATION. The biggest concern when it occurs with other spinal issues is that it is less likely to be done if it is part of a progressive condition or is impacted by other problems. In isolation, although it sounds scary, the cervical surgery carries little risk and the recovery time is 6-12 weeks depending on your mobility.

One important point to remember though is that the pain, although possibly fierce, IS something you can get used to and cope with. I have the equivalent of 8 or 9 prolapses all going on simultaneously and, until recently, was still able to walk with restrictions and drive.

@Sam_A, Cocodamol is a combination of Codeine and Paracetamol. Whilst all opiates have a common base all vary quite considerably chemically. Morphine and Pethedine are quite different chemically and it would have been useful to know which (if only one) caused such a bad reaction. Unfortunately your allergic reaction will put them off even trying different compounds to see if there are some you could get by on. I understand that it can be very difficult finding the courage to experiment with such a poor reaction but there are still a few medications you could try with the help of your GP or, more usefully, the Pain Clinic. Pregabalin is quite effective vs neural pain and others you could ask the doctors about are Gebapentin, Amitryptylene, Nortryptylene & Duloxetine. I use Pregabalin and Nortryptylene myself and most of the side effects I get are similar to those I get from opiates bar one. The one I find most difficult to deal with comes from Pregabalin and not from Nortryptlene and it is Night Terrors. Can be awful at times but, due to interference between the Pregabalin and the Fentanyl I take, I can cope so long as the dosage is kept fairly low. I could use Amitryptylene but find Nortryptylene better however both can knock me out for extended periods at anything above minimum dosage. I have been on high dosage of Nortryptylene in the past but I suspect the side effects are increased by the Fentanyl as, when I took Tramadol, the Nortryptylene didn't knock me out in the past like Amitryptylene. I had different issues with Gebapentin and Duloxetine so cannot use them, perhaps you can?

The Tens machine is very good for muscular pain and I have one myself, I also found a Tens belt which was much easier to use requiring no sticky pads. I purchased it myself from Boots for about £30 a few years ago. The back pain you have sound like muscular and are probably caused by excessive pain due to your issues with opiates. Such pain levels cause the muscles to tense up and the Tens system will help relax them and reduce the issues. Do not be frightened of experimenting with different levels and modulations from the Tens system, you will know very quickly whether they assist of do nothing but finding the right combination can be a godsend. If you do find it useful then try not to overuse it, which is extremely tempting, as it can become completely ineffective. I will probably try using my belt again soon since pain levels are rising due to the GP refusing to increase the meds any further and not being prepared to work with me to try out different combinations. My GP isn't very good at doing so or even bothering to keep in contact with me and I suffer far more because he won't make such efforts.

I hope both of you can make some progress with your issues but do be aware that even the worst of pain, when chronic, can be gotten used to over time and you can still maintain good functionality if you are prepared to work through it rather than giving in to it and prepared to suffer more pain than the doctors will suggest. It does take a lot of stubbornness at times but retaining abilities is work any effort and suffering it takes to keep it. The Pain Clinic always told me that the optimal level of chronic pain is around 30% but I have suffered as much as double that for extended periods when necessary because I was very stubborn and extremely determined to continue walking as much as possible.

TK

Circe

Topkitten
Thanks for your reply.my disc prolapse is in my lumbar spine I am not sure which way its come out of. Consultant appointment is booked so hopefully I will get a better insight soon as my other issues are also in the lumbar regions. The pain and muscle stiffness is an ongoing problem as is walking and not tripping up because of leg drop and numbness.

Topkitten

@Circe, the prolapse could explain the pain and numbness through nerve damage. Surgery will depend on the type of damage and how it is likely to affect the prolapse or surgery.

Hope things go well.

TK

Circe

thanks TK I will let you all know what the consultant says when I see them.

petitebumblebee

Thank you for such great tips and advice. It's always good to get a different perspective on things! X

Nova

I started having back pain in 2011 .it was when I took the dog out l found I had to keep sitting down at bus stops and trying to remember benches in various places I'd seen .Told my Doctor he prescribed different medications which I suffered all sorts of side effects l tried them all had a scan result was just wear and tear on the spine had physio therapy did nothing for me seen different spine experts who told me what others had said but in different ways after years of advise lve learnt to cope with my severe back coccoix and now knee pain .l personally don't think there is any magic pill for back or knee pain its just learning to know how to get from one day to the next l have bought all the leg and knee supports on the market cushions to sit o for my lower back pain at times they do work for a while and each in its turn makes life a bit more bearable .At my worse times lve hope l don't wake up next day to go through the pain again but I'm still here fighting through l have only been out of the house 5 times this year im really scared of reeling over in pain in public .l don't want people to see me in pain and the Grimace's on my face l think its like everything in life you learn to adapt one thing I think is good for pain is plenty. Of rest is a healing therapy in its self plus l use an actipatch which has given me lots of pain relief l do hope this has been helpful .in a small bit of a way and that l haven't waffler on two l Hope you find the relief you want ☺