"Simple ways to manage pain"

Warning this is an angry post! I am so sick of people advising me on simple ways to manage this pain or easy ways to manage this pain. I'm sure everyone experiences and copes with pain differently but I am so sick of able bodied people telling me that I just need to learn to cope and that there are easy ways to manage the pain. This pain is not "easy" to live with, and I don't believe there is anything simple about managing pain, personally I have tried yoga, different diets, meditation massages stretches sleep routines etc, and though it has sometimes helped it hasn't stopped me from, being in pain nor does it replace how it used to feel to be able to just do something... since my fibro has gotten worse everything has to be planned day trips are planned with medications regular rest breaks and emergency places to sleep for when I get narcoleptic, there is no simple way to "manage" this, and I am so sick of people thinking they can apply their experiences to my situation, physio for a broken leg is not the same! How dare someone turn around and tell me I'm just not trying hard enough, if only they saw the effort just getting up and making it to the toilet takes maybe they would shut their judgemental mouths and let me moan if I want to moan, because I need to moan I am 21 in constant pain I have no life and all I hear is how there are easy ways to manage and simple ways to cope,. There aren't. Simple, there are ways to cope but there is nothing simple about living with chronic pain, people need to acknowledge that.

33 Replies

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  • Hi Slippingintochaos,

    Yes the pain is something a person would need to go through to really understand it.

    I really hope that you can have a pain free restful night and that someone somewhere comes up with something soon that will work for us.

    I hope we can all have a pain free restful night, wouldn't that be something.

    I can't help you with the pain, but sending best wishes to you.

  • Hi slippingintochaos, you rant way , you sound like you really needed to get that of your chest , I can only guess that you are around people or someone with a lot to say about something that the dont understand,

    At least here we have a good idea of what you are talking about,

    There is always someone here who will listen to you .

    Wishing you a pain free as possible sleep if you can that is ,

    Take care

    Loraine x

  • Thank you for your reply it is appreciated. I haven't really got any family to support me my friends don't get it and I'm just sick of feeling like I'm going crazy, because I'm not it's just a lot of pain to deal with and as a 21 year old people expect me to go out drinking and do things my body just can't tolerate but how do I explain that... or deal with that?

  • Hi slippingintochaos, I truly feel for you at such a young age i cant imagine what you are going through especially without family to support you but then again they wouldn't understand, its a difficult thing to explain to anyone who does not have fibro, I got booklets from fibromyalgia uk and gave them to my family and friends even then they forget just as quickly as they read them i think , i was 30 when diagnosed and had a young family with a really good job which I still miss very much, I would love to be able to go back .but I also have lung conditions and am in and out of hospital, well fingers crossed that I wont be now as I have home oxygen now so hopefully this year I can stay at home as I was starting to think i lived in the hospital last year,

    Your friends wont mean to be so insensitive they just don't understand a complex illness the you unfortunately have , maybe try getting some information from the site i mentioned and see if it helps them to understand a little of what you are going through,

    Do you have a good gp and are you on any medication that give you some relief,

    Remember that there is always someone here no matter what time , whether want to chat or rant lol.

    Wishing you a pain sleep of you can

    Take care

    Loraine x

  • Amen!

  • Plus 1

  • Does anyone suffer with severe pain in their neck? I have had this pain for a week. Omg 😲

  • Hi Fibrolife. Yep been to doctors about it as well, guess what - yes he said its Fibro. :( as with everything eh!

  • Do you experience the pain at the back of your neck, like right at the base of your skill it feels like? That's where I seem to get a lot of pain for days a time.

  • I absolutely have had exactly the pain you speak of ! I suffer from Crohn's disease, different types of arthritis, Fibromyalgia, and goodness knows what else. When I am in a flare that area can cause me terrible pain.

    I've tried ice..a vibrating massage tool, plus I am on all types of pain meds. My old Dr. (who has since been ousted ) injected steroids on both sides of my neck. That did the most good of all. He said it was a type of tendonitis. Of course the new replacement Dr. won't go that route. Good luck finding relief..

  • Ice pack gives me some temporary relief when it's flaring, but the headache it causes is terrible too! It's not a migraine, it feels like the pressure of a balloon inflating inside my skull, pressing everything out - do you get that sensation at all as well?

  • Yep, also about an inch and half from bottom of my right ear moving towards the back, I have a small sugar cube sized lump which is really painful. If touched pain shoots up my head from back towards front. My doc can't feel lump, weird as my friend can but doc says he's not worried as -yep it's fibro - now there's a surprise.

  • Yes

  • Hi slippingintochaos

    Please feel free to rant away my friend. I have had a few good intentioned folk carry on like this with me. I no longer ring them, invite them around or even acknowledge them anymore. I simply do not want them in my life. I want to sincerely wish you all the best of luck and please take care of yourself my friend.

    All my hopes and dreams for you

    Ken

  • Good for you Ken. I had to do the same thing last year....sadly with my family. Nearly broke me but getting stronger now.

    All the best.

  • Hi kimbles

    Thanks my friend and I want to sincerely wish you all the best of luck as your decision must have bee so difficult for you. Please take care of yourself.

    All my hopes and dreams for you

    Ken

  • They do and you're right...sorry I couldn't say anything more helpful xx

  • Hear hear no we are not curtains cannot pull ourselves together xxxx

  • And so say all of us!!!! xxx

  • Hear.Hear. well said hun.

    If they only knew the effort it takes to get out of bed.

    My neighbour keeps saying 'now try and stay well now. Don't think your going to be ill' who doesn't want to stay well????? .

    Breath in and rant to us hun.

    Take care

    Angie xx

  • As all of us here know, pain is an individual thing, some people can cope with pain better than others, but, like grief, we all have to find our own way through it, there is no 'one size fits all' approach.

  • How about the ones that say Positive Thinking is the way to go. Well I can think positive thoughts but there is no way that compares to taking strong painkillers :)

    If it was all in our minds we would only have to think nice things and we would be cured!

    If only.......

  • Nicely said Bluebell, I keep trying to pretend pain is not there, I tell my mind everyday, but obviously not pretending well enough. 😩

  • Hi slippingintochaos, your post is really powerful and important, you have hit the nail on the head!! Pain is so real, constantly eating away at your body and mind😢😪

    I have spasms which are so painful that all I can think about is planning how to die. I'm not saying this for sympathy, I don't want sympathy, and I don't want to see a doctor who keeps raking up my traumatic past, all I want is to be able to make my own cup of coffee and drink it without spilling it!!

    I want a calm, peaceful, but more importantly a pain free life.

    I find it hard to type this myself, I've managed to tape my fingers together so I have more control and independence! That's what destroys me, my independence has gone, I can't go out alone and I'm totally dependent on my carer and I'm depressed. Sorry for going on, I'm now exhausted and need to sleep. Oh I nearly forgot... the tape😜needs to come off! Kitty55🐱

  • It's the hardest thing pain unless you have it people don't get how bad it is as it's a pain you can't begin to describe and it affects you physically and mentally. I'm 47 and I feel like my life has been turned upside down can't begin to imagine 21 year old . All I can say is rant away on here as the empathy is worth weight in gold along with support tips etc it's a lifeline especially for me as I hadn't even heard of this cruel vile illnesss till I got diagnosed so there are a lot of people here who have suffered for years and totally been there done it and get it.

    Take care and look after you that's the most important thing

    Lisa xx

  • Hi sllippingintochaos

    I'm right with you. It's maddening isn't it. I'm so sick of people (especially taxi drivers) saying "but you still look good, don't you?" as though it makes it OK.

    I lost all my friends about 3 years ago after going through exactly what you are now. I remember the massive shouting and crying bouts I had for 18 months, trying to come to terms with it and eventually I accepted that I was very ill and in terrible pain and exhaustion.

    You know that everyone on here feels for you so much. Get it off your chest and I'm so sorry you have no-one that understands. My ex has been with me all the way, so I'm very lucky, but when he's brought me my tea, he's off home and I'm all alone again.

    A great big gentle hug for you and I hope you are getting as much help with the pain as possible from your doctor. If not, I'd change him or her.

    X x x

  • Well ranted. I hate the "oh you look well" comments when I feel like Im in someone else's body that has been beaten by a boxer, put on the rack and stretched in different directions and then run over by a bus. Oh yes Im fighting fit NOT!

  • Hi slipping ntochaos, im just check in to see how you are feeling tonight,

    I hope last night heled I see a few people replied to you,

    Wishing you a pain free night,

    Loraine x

  • what people dont understand is pain is personall and anyone who has experieced it will know. if you have a broken leg it mends and its only in one place some people have it all over their bodies so its hard to live with what is next to think about. and all these phisios well they put you on things before checking you out and that can make things worse than they are this is no age to be in pain all the time

  • Well my dear slippingintochaos,

    Sorry to hear about your plight, you are so young and I know that it seems, no, feels like you have no life. Because at your age life is suppose to become more exciting, as new doors open to challenge you with interesting changes. You will hear people say very incentive things which will test your patience. And you will meet people that will make you see that you do have a life. There will be days when you will not want to be and there will be days when you will experience joy. It is a difficult journey but even difficult journeys have their peaceful, happy moments. I feel your pain and your frustration. It's like being in a room full of people and every cell in your body is screaming out, and you wounder why no one else can hear them. But let me reassure my dear one, though they maybe dark days they are also happy days. You will meet people that understand what you are going through and you will meet others that only see what you are from the outside. Its okay to be angry and its definitely fine to have a 'moan' and when you want cry, when the pain becomes too much. Let it flow. But never give up. I'm a woman who was diagnosed with this ememy when I was in my 20s I am now 54. And I am still travelling on this journey. There is life, you now have to live it differently. I wish you all the peaceful days and the joyful day that will come your way. There is one place on our journey where we can rest it's called HOPE.

    I know I don't know you but I am sending you love and wishing you peace.

  • So agreed with you sweetie xxx

  • I had this neck and head pain all last week. My head felt like it was going to explode along the nerves. Yes just like they were being pushed out. Wasn't sure if I was going to wake the next morning it worried me.

  • Ditto!

    I agree, until you walk in some ones shoes, just zip 🤐 it!!!!!

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