What has helped you with managing your pain?

What hints would you give people that you think has helped in your own pain management.

For me it is a simple thing that my doctor suggested was keep a pain diary.

I now keep a pad at the side of the bed and each night I put down a number between 1 and 10 at what I think my pain has been for that day.

Pain record using a scale of 1 to 10.

With 1 being equal to stubbing your toe on the end of your bed (it hurts but you know it will go away soon.

And 10 being someone hit you with a sledge hammer in your back and keeps doing it all you want to do is die all movement is extremely painful even trying to take a deep breath hurts.

I did this for 2 years, and before I use to say my extreme pain was only every one or two months but now see how bad it has been.

over 60% of my days I found out I am at a pain level of 6 or above which means I cannot do just about anything from trying to make a cup of tea most of the time above level 6 I spend in bed as trying to get out causes more pain than I can manage.

29 Replies

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  • Hello

    A Pain Clinic is the most important recommendation I can offer, followed by, a periods of talking with a CPN and associated courses over the last decades

    One further help has been doing voluntary works in mental health and dementia. Taking part with Healthwatch think tanks and been able to recommend forward changes in NHS policy

    You need to be able to compensate or those negative feelings we all suffer from. I suffer Reactive Depression due part to chronic pain

    BOB

  • Hello back again

    A further recommendation is always plan a activity before going to bed for next day, that you will enjoy and look forward to.

    Never go to bed with negative feelings, try and put those to sleep before you yourself rest, so you get a good nights sleep

    Have good interests and hobbies, no matter how much you can do at a given time, this proves to be a positive way forward

    BOB

  • What's a good nights sleep !!

    Havn't had one of those for over four years.

    I do agree with you though about planning the next day out.

  • I back up the interests idea, and range them around what is physically possible each morning. audiobooks are the last resort on pain level 9, computer games and surfing 8/7, handicrafts 5/6, and sewing machine, travelling out in chair, 6-4. If I accomplish something each day, even if it is just another level on a fb game, then it is something, and keeps my mind one step away from the pain.

  • for me 1-2 is one of my best days when I can manage to walk to the car and if I park close to a shop I can manage to have a quick walk round as long as I get a trolley for me to lean on, then between 2 and 5 i will either do something in the house or do a little bit on one of my models but if above 6 it is unusual for me to manage to get dressed I normally just hope I can get myself a cup of tea, but if 8-10 I can do nothing I am scared of taking a deep breath as it causes more pain and quite often another spasm which just makes things worse if I have managed to get to bed then I stay there but if I am up then I just have to stay where I am as it means my back has gone into spasm and I am on the floor which can last from a couple of hours to a month or more and then I get really depressed and do not like life at all at them times but I get through them and live on for another day.

  • Hi Poppy your post has really helped me. When my pain is a bit

    Better I will try and do some things, even tidying up here and

    Then try and do some crafts.

    I have started a new Medication today so I am hoping it will

    Improve things ( PregAbalin - Lyrica)

    I have never experienced such pain and realise now what it Is

    Like.

    Healing hugs

    Hannah

  • Hi Photogeek, i am on Lyrica (pregabalin) i started it around 18 months ago but i am not sure that it makes any difference as i am on that many pain meds i have no idea which are doing what, i know the oramorph is the strongest for short term relief but for the long term relief i think the Dihydrocodeine is the one that i cannot do without I take 120mg slow release twice a day if i miss one it only takes 3 or 4 hours for me to be a gibbering wreck on the floor, i use the oramorph if i have to go out anywhere i take between 4 and 6 spoons full and in around 30 minutes i feel it take effect (I am only meant to take 1 or 2 spoons full) but that does not do enough I have found out that the pain meds do hide some of the pain but when they start to run out the pain is still there waiting for you it feels like the pain has been stored up and as soon as you come down of the meds the pain is released all in one go , i found the same with wearing a back support it gave some relief but as soon as i removed it all the pain it had helped with all came back in one go so it was like being in 4 or 5 times as much pain for several hours for me it is best to accept it as it happens and if it gets to much i just have to stop and lay down or if i am somewhere that there is no where for me to be able to sit then i hit the floor and there is nothing i can do about it.

    regards Poppy Ann.

  • Hi

    I've been on this medication for 3 years now. It does help me but I have gained 5 stones of weight. It's a bit of rob peter to pay Paul situation for me

  • I found support from other people with fibro made me feel a lot better and gave me the motivation to help myself, mostly walking and moving eases the pain. I also stay off all meds as I don't want the side effects, but do take various supplements and homeopathic remedies. I think feeling happier, losing weight and exercising (Ramblers now!) have had the greatest effect upon my experience of pain though I do still get some.

  • I guess its different with different conditions, but with me having ankylosing spondylitis, what makes the most difference is exercise. Its not easy to push myself to move or stretch when even just getting out of bed can have me in tears, but its worth it in the greater energy and range of movement I have later in the day.

    For my specialist appointments, I use a "body map" to colour in painful areas in two colours - one colour for areas that hurt a lot or area hurting right now, and another colour for areas that hurt a bit less or only hurt intermittently. Its a really graphic way of showing what is going on, and makes a lot of sense for recording the pain of rheumatic disorders.

    I do on occasions use a pain scale, and my preferred one (that makes most sense for me) is the Mankowski scale. You can see and copy it from here wemsi.org/painscale.html - they ask that you always copy and acknowledge the source if you print it out. On that scale my pain is never less than a 6 and often goes briefly up to 7 or 8. If I was just told to rate my pain on a scale of 1-10 without any further explanation other than 1 being little or no pain and 10 being the worst I could imagine, I don't think I would rate it more than 4 or 5, which means that I would likely under-report pain. A scale like the Mankowski one means that I really am reporting my pain like it is. If I am telling a doctor what my pain level is, I always print out the scale descriptions, hand it to them, and say "on this scale my pain is......"

    The other thing I use, that again is related specifically to ankylosing spondylitis is the BASDAI (Bath Ankylosing Spondylitis Disease Activity Index). There are various disease activity scoring systems for different disorders, and they can be quite useful to monitor the progress or flares of your disease. Again, I do this, and print it out, any time I am seeing a specialist as it gives them a very clear indication of where things are at for me.

  • Hi Earth Witch,(great name by the way)

    using your scale I would put my good days as a 6 (i only get good days around 7-8% of my time) but the majority of my days are a 8-9 and my bad days are in the 10 mark, i have never admitted to my doctor that i can pass out as i was scared of him stopping my driving licence as the only way i can go out is in my car and i try to force myself to go out at least once a month even if it is just to my local supermarket (ASDA) as i can park next to the doors and as long as i have a trolley to lean on i can get round the shop to pick up a couple of items the main reason i go is staying in the house for week after week with no one to talk to can drive me mad the best person i know is the post lady as she comes almost every day so i get to hi to her, i have to admit there are times when i think about ending it all with my life being the way it is i wonder if anyone would notice if i was not here, if it was not for the fact of my two children who i know it would upset (not that they would notice for a few months) i think i would have done it by now.

    I am ashamed of the way i am living this place is filthy i cannot manage to even run the vac over the floor as every time i try it puts me back in bed for a few days at least, every time i do go out i know that it will knock me out for a few days and i will suffer due to it but if i did not go out it would drive me insane.

    on my scale i have explained each number in detail when i have to explain how i am to a doctor or one of the SS interrogators normally called a "Medical professional" by ATOS but even when you have explained to them how you are they put down a completely different reply from what you tell them.

    thanks for putting up your pain report/method

    regards Poppy Ann.

  • Poppy, that is a very bleak picture and I don't think you are getting enough help from social care. Please contact your council for a needs-led assrssment. And make sure your social isolation is taken into account too.

  • Hi Calceolaria,

    Thanks for the reply, the local council came round when i first moved in and helped by fitting rails in the shower room (no bathroom in this place) and in the toilet plus they got me a "Bed lever" which is a handrail for the bed which is the best thing they could have done for me as when i am at anything above what i call a pain level 5 I could not get out of bed or i should say i could not get sat up from lay down which is the first step for getting out of bed, also they came and renewed the hand rail outside as the one that was fitted when these bungalows were built were for dwarf's they fitted them at a height of 4 foot at the bottom of the steps and around 2'6" at the top I think whoever fitted them must have been on something at the time.

    I think one of my problems is i do not like to talk about how i am to anyone as before i get to the end it upsets me so much i cannot talk, as for the doctor what i feel when i go is they just want to get me done and out as fast as they can, I normally only go once a year just to let them know how the latest drugs are working or not working as is normal.

    Just over two years ago the doctor got me a appointment with the local pain clinic and the doctor there said that there are many new things they can now try which were not available when i first damaged my back but as i was not living in the uk at the time he just arranged to change one of my pain killers to Gabapentin but i had a bad reaction to them and spent close to 3 months in bed and unable to move which i thought was due to the return trip to my boat but it turned out it was the medication so i just stopped taking them and went back to my old ones (I was lucky I have 3 months supply spare on the boat) and within a week i was back to where i use to be when i next returned to UK i returned to the pain clinic and he arranged for a new MRI and changed my medication to Trans Bu patches (morphine) the patches worked quite well but started to cause huge burns to my skin so i had to stop using them, I had the MRI and then a few weeks later i returned to the pain clinic and all the doctor said was "there is nothing i can do so i am discharging you back to your own doctor" which shocked me as he had been so positive at the start about new treatments so that was that.

    At the same time i was going to the pain clinic I had found out that I am transgendered and I had started to change from male to female, the first couple of visits to the pain clinic I went as male but the last one was as female so I think that was the main reason for not wanting to see me so I doubt I will be going again.

    Now with living in UK full time I am the worse i have ever been, I think with living in the Caribbean for ten years it was reducing the pain but over the two years i have been back it has all caught up with me.

    I think a good thing the NHS / social services could do is open a development with care homes and housing in one of the central american countries as living costs are around 30-50% of the cost here and the people who are here and suffering with pain will find it much reduced there the NHS would find savings the social services would find savings so the country would be much better off than they are here and i bet there would be a que a mile long of people who would like to go, employing staff to help in the home is extremely cheep a skilled man only earns between $5.00 and $10.00 per day and unskilled labor is between $3.50 and $5.00 per day and for that amount they work very hard as jobs are hard to come by unskilled labour for someone working for a local is $1.50 per day or was when i was there 10 years ago it may be a little higher now but if you just change the dollars for pounds it will not be higher than that.

    But we know what would happen if they tried to do it is the trade unions would complain that their workers were losing out so it will not happen.

    sorry i have rattled on a little to long I forget to stop once I start.

    regards

    Poppy Ann.

  • Care Homes in the UK are now almost entirely in the private sector so there is no trade union protection for the workforce.

  • Thank you for posting the link. This is the first time that I have ever heard of a meaningful Pain Scale.

  • The love , care, support and understanding of a good woman or man. It could be from your pain clinic staff or failing that the person you married!

    Pat x

  • Hello Pat

    Men are always looking for a good women, even when they have got one already !!

    Now I look at the support that I receive from more unusual places where you get encouragement from places that you would not consider, like this site where in many situations people feel they can gain support through a group like this when pain is such a personal thing.

    With regards to Pain Concern acts, links to different sites could eventually be set up where the member could be able to be passed down the line to an associated problem site where their condition could be handled in entirety

    Health should be looked at as a something in its entirety.

    All the best

    BOB

  • Hello Pat

    Men are always looking for a good women, even when they have got one already !!

    Now I look at the support that I receive from more unusual places where you get encouragement from places that you would not consider, like this site where in many situations people feel they can gain support through a group like this when pain is such a personal thing.

    With regards to Pain Concern acts, links to different sites could eventually be set up where the member could be able to be passed down the line to an associated problem site where their condition could be handled in entirety

    Health should be looked at as a something in its entirety.

    All the best

    BOB

  • I was given tips on how to use distraction for pain, but this does not always work when pain is severe, management often has to consist of several options with changes during flare ups. Other stresses can make it harder to cope with ongoing pain.

  • When pain is so frequent that ignoring it is not an option, one desperately wants to see if one can take control and to this end a diary is essential. Most doctors urge one to record likely triggers or exacerbating factors but too few stress that the most important thing to chart is exactly what one has been eating each day.

    There are strong links between what goes into one's body and how it behaves. Many people are affected by foods they eat every day without realising it and might find relief from their symptoms if they eliminated, for example, all dairy products for a fortnight or citric fruit or cereals or processed meat. The medical profession is under huge pressures from drug companies to believe that the only way of relieving pain is with a drug but many more people are helped simply by changing their dietary habits. It's tough giving up sugar or milk or bread but if the pain is bad enough, what's there to lose in a few weeks' trial? But a detailed diary is essential: we all slip into careless consumption easily. I'd strongly recommend anyone with chronic pain to stick exclusively to a diet of fresh fruit (except citrus) and vegetables and no processed food of any kind for a month just to see what happens. The benefits can be startling.

  • Thanks Woodlog I am definitely trying to improve my diet, I am

    Sure it would help.

    I would try anything, I am going to back to my Yoga and even try so e gentle

    Stretches and try and do any that don't cause too much pain.

    Hannah

  • Run as fast as possible to a pain clinic!!! You need not suffer, there are medicines out there to help!!!! Hope you find some relief soon sweetheart!!!! xxx Mitzi

  • learning that no single thing will help the pain has helped me to cope with it. I think it is easy to fall into the trap of "this will be the medication / alternative treatment / injection" that cures it, and then when the pain doesn't go completely it is so disappointing.

    Knowing that you have a whole box of tricks to try when the pain flares up is helpful. I have written down a list of what helps because in the midst of a flare up it is so easy to curl up in a ball and feel miserable, rather than to take steps to help yourself.

    My personal things are : heat packs, a bit of exercise because getting stiff makes it worse, doing the exercises a physio has taught me, doing something to stop myself thinking about it too much, and medication if it gets above my usual tolerance level.

    I am also lucky enough to have botox injections from the pain clinic - this has helped me a great deal.

  • I forgot my diary! It's useful in tracking the pain so you have something to take to appointments. But it's also a place to rant and rave if you need it. And quite often, having let off steam I will write about something completely different that's positive or nice or funny (even if it's a small thing). Though I don't show those comments to anyone else!

  • Thanks Teadrinker that's really helpful to

    Realise that I should have a little list of things that help.

    A heat pack helps me and trying to do physics excercises.

    Writing in my journal helps too and I record even a tiny improvement.

    Hannah

  • TRY AND BE AROUND POSITIVE PEOPLE, NEGATIVITY IS SOOOO DEMORALIZING.

    STAY POSITIVE YOURSELF, AS HARD AS IT IS, YES YOU WILL HAVE BAD DAYS, BUT REMEMBER, IT WILL PASS, MAKE SURE YOU HAVE AN UNDERSTANDING, SUPPORTIVE DOCTOR, AND KEEP SHOUTING, ASK FOR HELP FROM THOSE WHO CAN HELP.

    KEEP FAMILY AND FRIENDS CLOSE TO YOU.

    HAVING NEVER READ BOOK, DUE TO JUST NO INTEREST, I'M NOW HOOKED, ONE DAY, THE NOTEBOOK, THE WEDDING AND NOW ONTO A WALK TO REMEMBER, LOVING IT, TAKES ME AWAY FROM MY WORRIES, CONCERNS AND AT TIMES PAIN.

    STAY STRONG AND KEEP ASKING FOR HELP

  • Unfortunately I havn't found anything that has helped me so far but I did find an App for my iPhone that you can log your pain levels like your doing with paper and you can see the ups and downs for the week on a graph, I can also put my meds in it , how much and when there due and an alarm goes off on my phone to remind me to take them. It's pritty good. Not sure what it's call but I just searched recording my pain and meds reminder .

    Good luck finding other things to help you

  • Friends,

    Unless and until you get your Magnesium level in the body to optimum level, there won't be any permanent relied in pain.

    It will be only symptomatic relief .

  • No help from the Nhs at all I take magnesium capsules and cod liver oil have done it for years meds help a little but the more you take the damage to your organs I know without writing or a app what my days are good or bad mostly it's bad I'm at the end of my tether got so much stress with other things going on I can't see a way out

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