Dealing with chronic pain
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A cheerful thread about chronic pain.... Let's try it.

mossycowmossycow Member Posts: 495 Pioneering
I've not seen much on this forum about chronic pain (though I assume other conditions will cause chronic pain.... Just... Sorry if this is clumsy)

But when people ask what's wrong (why so they do that?  Let's talk about TV or food or music or... Etx)... All I have as a diagnosis is chronic pain and weakness from the waist up. 

And it is what it is. 

So,  this isn't the best start of a thread but I'd love to hear abput your experiences of chronic pain and how you manage,  cope,  maybe even overcome pain? 

"I'm trying to live like a random poem I read that ended 'to bloom where we are planted"


  • bambam Member Posts: 331 Pioneering
    [email protected] I'm sorry to hear about how much pain you've experienced. I also have chronic pain. I just try to keep my back loose by stretching a lot. When I have those quiet times I lay down on a heating pad. It's really difficult dealing with chronic pain. I really hope you feel a little better soon
  • joannarashellejoannarashelle Member Posts: 135 Pioneering
    Hello mossycow how are you,

    I too struggle with chronic pain, I guess it can affect us all quite differently some stay in bed and rest while others get on with it so to speak and try not to let it interfere with their life.

    Sometimes my pain is so severe I've had to shut all my windows in my house as I'm crying out so much, not wanting the neighbours to hear!!

    But I tend to try and keep myself busy this works for me, though it's important we let our bodies rest I've learnt this over the years. 

    It can can be frustrating that's for sure, I'm quite a proud person and don't like people to know I'm struggling, but then others benefit from people knowing.
    Its what works for you I guess! 

    Treat yourself to something you enjoy, this always helps me!!

    Hope you're feeling ok today x
  • MatildaMatilda Member Posts: 2,616 Disability Gamechanger
    Any of these might help:  freeze spray, ibuprofen gel, hot water bottle(s).
  • mossycowmossycow Member Posts: 495 Pioneering
    Oooh yes, finding heat helps.  I mentioned to my pain consultant and she said to go with it.  I read a lot of Lorimer Mosely and abput how heat travels down a nerve path quicker than pain.  So I have hothouse wheat bags and with a bit of PIP money I got a cheap microwave for our bedroom (upstairs noooooooooooooooo to stairs) and that's been great at night. 

    Also,  consultant prescribed chilli cream.  It's a topical ointment you can rub on.... It goes hot and frankly itchy as anything but it kind of distracts the nerves from hurting.  I only use it those shut all the windows times! 

    Wish I'd got more help from physio on what to do... 

    "I'm trying to live like a random poem I read that ended 'to bloom where we are planted"

  • bambam Member Posts: 331 Pioneering
    Yes my doctor gave me a topical gel too to rub on sore spots
  • Zec RichardsonZec Richardson Member Posts: 156 Pioneering
    I have the opposite, pain from the waist down.
    It started with knee problems many many years ago and after having an osteochondritis graft on my left knee and working to recover from it, I had an accident at work and ended up with a knee replacement and the pain never went away, I have been diagnosed with CRPS.

    Distraction is the best defense against pain, that's why when it's dark and we are laid there with no noise or anything, the pain always feels worse.

    I haven't actually found anything to totally help, I'm in pain every day but I try to keep myself occupied and I love reading, however sometimes the pain does get so bad that I can't concentrate on anything.

    Hopefully one day they will find something to help us
  • [Deleted User][Deleted User] Posts: 128 Listener
    @mossycow that's a great idea about the upstairs microwave! I'd never have thought of something like that but now you say it it makes so much sense!  why don't you submit it to the tips section? 
  • mossycowmossycow Member Posts: 495 Pioneering
    edited January 2017
    I shall..... I was so grateful of it last night as though my legs are healthy (just unfit!) I cant stand straight without evil stabby pains in my back so stairs take too long!!  I enjoyed my little microwave  :)

    CRPS. - yes! That's the one, I can never remember what its called. Do you find it hard when people ask what the matter is?   I think some people see it as  JUST pain  grrrrr

    I have had some real progress with gabapentin but only in shooting pains in my wrists. Doesn't seem to help back and shoulders but codiene takes the edge off. I had 3 yeas of getting over (most) side effects so am letting it settle a little while... Though seeing pain consultant in March and I think she will suggest duloxetine again. So sore but not sure if I can cope with more side effects just yet... So have been doing lots of heat, distraction. Have found improving mobility (new power chair) has helped as I am happier and busier in it and dont have to hoik manual chair in and out of car etc.

    "I'm trying to live like a random poem I read that ended 'to bloom where we are planted"

  • smannismanni Member Posts: 7 Listener
    Hi everyone, I have had chronic pain in my back for years. I had an operation when I was 13 to pin my hip back into place, this went wrong because they put one one the pins through a nerve and paralysed me from the knee down. After lots of physio,various calliper's and wheelchair. I finally had an ankle fusion to relieve the pain at aged 24. This left me with osteoarthritis. I pulled my back around 10yrs ago stupidly picking up a bag. This got better with rest, but back got worse over the years leaving me with unstable bulging discs. I even pulled back when brushing my teeth as I spat out the bits into the sink. My partner actually heard it pop. I now have had every treatment going and am currently on Pregablin ( which is stronger than gabapentin)  6-8 cocodamol a day, amytriptoline at night to help me sleep which doesn't work ( partner said she's getting a lump hammer to knock me out lol). Waiting to see pain clinic again for injections as neuro surgeon said not bad enough for operation yet ( need to pee or poop myself before do anything). Also told got Fibromyalgia and carpal tunnel oh and got high blood pressure and asthma too. Lol not got alot going right at mo apart from my amazing partner who has rheumatoid arthritis very bad herself and has injections once a week bless her. Still go out but not like I did as can't walk far ( me mums 79 and overtakes me ha hahhh!). Got to laugh haven't you or else I'd be a crying wreck. Sorry to have had rant on here.
  • sarah44sarah44 Member Posts: 3 Listener
    I too have fibromyalgia degenerative spine d
    osteoarthritis bulging discs high blood pressure Ibs I also have tennis and golfers elbow  in both arms can't lift arms up above my head.  In Chronic pain every day I have the problem I'm allergic to lots of medication I've had it injections acupuncture you name it I've had it
  • sarah44sarah44 Member Posts: 3 Listener
    I also am allergic to lots of medication
  • smannismanni Member Posts: 7 Listener
    Omg poor you. Im having trouble with my shoulder and hands x
  • ChrisKzChrisKz Member Posts: 30 Connected
    I have been living with it for years . A Tens machine helps , hot water bottle and i saved up and bought a hot tub ( To me it's the only thing that actually works in subduing the pain).  Now that ATOS have cured me of my degenerative bone disease of the spine , my Osteoarthritis and other medical conditions . I can no longer afford to heat my tub or my home . So now the pain is more prominent . 
  • MatildaMatilda Member Posts: 2,616 Disability Gamechanger
    Have you appealed the award decision, @ChrisKz?
  • ChrisKzChrisKz Member Posts: 30 Connected
    just the mandatory one .... I went to GP yesterday .. spent 40 mins in there .. After i asked for medical info ( to help with main appeal)  i recieved the same info as i already had 6 years ago . I phoned the surgery and spoke to the head admin . apparently my xray of the left knee was normal .... but a prevoius xray  ( 2 years earlier ) showed damage . Bone does not repair itself . Anyhow after hearing that . I have been referred back to Hospital for an MRI on left knee .... I have an Electromyography booked in on 2nd .. I have lung testing on 9 march as i get out of breath easily .. even when relaxing  ( quit smoking 3 years ago) . Also hope to get referred to get another MRI on spine
  • ChrisKzChrisKz Member Posts: 30 Connected
    Forgot to mention to have an op on right hand to remove a lump

  • MatildaMatilda Member Posts: 2,616 Disability Gamechanger
    PIP points are not awarded for the conditions themselves but for how those conditions affect your ability to undertake everyday necessary tasks (washing, dressing, preparing food, eating, taking medication, going to the loo, and a few others) and how they affect your ability walk.  There is a very good guide to PIP in general on the Disability Rights website.
  • mossycowmossycow Member Posts: 495 Pioneering
    God, it's all just faff after appeal after form after etc etc... So frustrating. 
    So..... Any cheap and realistic ways of soothing pain, even just a tiny bit? 

    "I'm trying to live like a random poem I read that ended 'to bloom where we are planted"

  • ChrisKzChrisKz Member Posts: 30 Connected
    I have had 2/3 decisions overturned on appeal .. just winds me up the misinformation these ATOS  ( Agency Workers) put on these forms . Even the Doctor was amazed at what was there
  • ChrisKzChrisKz Member Posts: 30 Connected
    Just been put on JSA ... another drop in income .. Not sure how long I will be able to live in my home .. or just put in a room with a bed , Even getting to treatment will be a major problem as without transport  wont be able to attend Hospital appointments in future. Just waiting on a Phone call from Martlesham Scope as they are busy so left my contact details with them

  • MatildaMatilda Member Posts: 2,616 Disability Gamechanger
    Hope Scope can help.  You have to get across to Atos and to tribunals how your condition causes disability - and point out all Atos's lies in your appeal.
  • ChrisKzChrisKz Member Posts: 30 Connected
    With all what i will go through , I hope all the evidence will help . To be very honest , I don't even know what the TRUE medical conditions are that I have . I don't really have any written evidence ( not for the past 6 years) ,of what I am actually suffering with , just word of mouth , and we all know that does not carry any weight
  • sarah44sarah44 Member Posts: 3 Listener
    Get your GPS to get bloods done check for B12 difficintcy as this is very serious  look it up on you tube it is all the symptoms of ms.
    I am allergic to most medication so I can only have oramorph and diazepan and paracetamol which does not take my pain away
  • MatildaMatilda Member Posts: 2,616 Disability Gamechanger
    @ChrisKz - ask your GP to refer you to a specialist(s) and get expert diagnosis(es).
  • ChrisKzChrisKz Member Posts: 30 Connected
    That is under way , with all the referrals
  • Chris_AlumniChris_Alumni Scope alumni Posts: 695 Pioneering
    Hi guys, just a quick note to let you know I've move this discussion to our new 'Dealing with chronic pain' discussion group, which I hope you will find useful.
  • tw25tw25 Member Posts: 17 Listener
    I also suffer with chronic pain. Degenarative disks yet prob not causing the pain so im told. Over the yrs the pain has changed and moves around my body. Been back to GP as wondered if was Fibro. On numerous meds co codo mol, diclofenac, mefenamic acid and amitriptaline for nerve pain. Also on anti depresents. Got RSI in hands plus on going shoulder and arm pain possible RSI but being looked into.It's horrible not having a propper diagnosis. Done 2 pain clinics which all i took from these was to learn how to pace myself. 
              Hard to explain to someone that some days you can sit in a car others you cant yet still expected to get a job. Ive not worked now for 8yrs and job centre have offered me no help. Put it all on you. Live 1 day in our shoes they may just understand.
            Things that help me are accupuncture which you can get free on nhs also i brought a accupuncture mat to lie on. Tens machine is also pretty useful.
    Memory foam matress / Topper. Really helped me sleep better.
  • feirfeir Member Posts: 396 Pioneering
    i've found using a bean bag to sit and sleep on helped with shoulder pains and hip/groin area pains somewhat, even when sleeping as it takes the weight off 'weak' areas, staying propped upright at all times helps except when the hip is bad and then leaning over on the beanbag (on my stomach) helps, it does seem to be taking the weight off painful areas is helpful. taking it easy and not doing things i feel like i can do helps also (but it's really hard to remember not to do them when you feel capable). luckily naproxen and codeine also help me for mild to moderate pain, but when the pain is agonising nothing works at all. using a large beanbag is my godsend though. :)

  • mossycowmossycow Member Posts: 495 Pioneering
    Hi fellow chronic painers xxx thinking about you all and hoping Christmas is bringing more joy than it is pain.

    I've been so lucky so far. I've had a chest infection this week before Christmas every year for 5 years... But not this year. Agree that pacing  yourself is so hard. 

    I had a really bad spell at Easter but after some hospital trips, I was given methocarbamol and oramorph to 'top up' my pain relief when needed. I've felt much more in control and basically been able to get more done without that terrible fear of the pain during and afterwards. Getting better in wheelchairs too which has helped. 

    Wishing you all a low pain holiday xx

    "I'm trying to live like a random poem I read that ended 'to bloom where we are planted"

  • PhrixusPhrixus Member Posts: 1 Listener
    I have found good pain relief and help with sleeping with eatables. I live in Colorado so I have access to medical marijuana. Has anyone else had any experiences with using this method for pain control versus opiods? In my opinion, it is safer to utilize this rather than pain killers. 
  • mossycowmossycow Member Posts: 495 Pioneering
    Hi guys  have to admit @Phrixus... I've always wondered about cannabis as a pain  reliever r.....

    It's 3.30am and I can't bare to turn the light off. So have just put 'The Archers' BCC radio 4 on  that I use lots. It's kind of interesting enough to distract but not so exciting to keep me awake.... 

    Had massive pain last few days... Almost worth it cos when it goes back to normal pain I feel grateful! Except... I do think it's getting worse. 

    The fear of pain is often as bad as the pain so with extra pain killers it does help give me more confidence. 

    Happy Spring holiday folks! 

    "I'm trying to live like a random poem I read that ended 'to bloom where we are planted"

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