Being Social with Chronic Pain

Aly19 · October 2019

Hi all, basically I'm just looking for people who (I hope) get it!

I've been suffering from chronic pain now going on 10 years - I'm 26 and just miss having any form of social life and lets face it, it's just generally a lonely place when in pain.

I struggle to stay awake, have a lot of anxiety and generally be social (especially if food/drinks involved) because it's so much effort to act 'well'. I have a great support network around me and quite frankly I don't know how I'd cope without them, but at the same time, I feel like I burden them and just have no real life outside my own 4 walls... & and cold dark weather isn't helping either.

So, any advice on how not to be a party-pooper

NB - I've managed to slowly wean myself off most of my medication after some very bad side effects. I'm now using a more holistic approach which I appreciate isn't for everyone, but so far is better for me, so as much as I'd appreciate any advice, please don't recommend antidepressants/medications etc.. Thank You

zakblood · October 2019

i'm 52 and have suffered with it for more than 20 years now, started in my back and now also in my hips, med only cover the pain, but then long term give you other issues, no or little use of bowel, bladder or failing kidneys, and yes it's all done on the meds side effects, just most don't read or think they will be on them long enough to do the damage, not all do, just a combo of some tbh.

depressants, well if your not on them beforehand, you maybe after a long time on the pain meds, as one thing leads to another, the light at the end of the tunnel is this,

one your not alone, and two, you can and will live with it, as there's plenty worse off, so chin up, grin and bare it, finds things that help and well not take the mind off it, just get used to it, then cope with what you can not can't do.

for me, hydro pools work, swimming does, light exercise, diet, bike riding if you get a good and special bike, as mines lower back and poor hips, i go for a flat ride and have a what's called a big bum seat, then have higher handlebars than a standard bike, can be adapted from a normal bike at any shop for little cost, around £20 fitted mine was, so my bum is in the right place, my hips work correctly and easier than a normal bike, then my spine is upright without me leaning forward putting pressure on my spine, be happy on the flat and if you get a mile, it's a bonus, after 20 years aim for 20, then you may on a good day do 8 to 10 which is my max.

cold is no good for us, wet and damp isn't either, then add on SAD, https://www.nhs.uk/conditions/seasonal-affective-disorder-sad/ which goes with the downers / depressants etc etc, winter overall becomes or can become something we dislike, but keeping warm, staying active and mostly fit, a good diet and tablets under control, i kind of like the seasons now, still hate the cold mornings, get migraines when the air pressure gets to a given bar, so make a plan, read alot lol and understand, there's always someone worse, so be happy with less problems https://www.healthline.com/health/headache/barometric-pressure-headache

in the end there is no other options than to get around it and live with it the best you can, don't take my word for it, as i've just had 20 years feeling sorry for myself and only just been told i'm work shy, which i thanked the person who said it at the council office as it made me realize that i'm not the burden which i've felt i was, and now are actively seeking work and doing something about it, not for her, not for me partner who has cared for me for the last X number of years,...

for me, myself and my dignity, get well soon and look after yourself, as no one else can do it for you, oh and welcome to the forum btw

paffuto10 · October 2019

@Aly19

Sorry you have this at such a young age.
My daughter (27) also has chronic pain. She has these tips for socialising...

* Don't stay too long, try just one hour, two at the most.

* If you can stand, walk a bit or move a bit, do this every 15 mins so as not to stiffen up.

* If you're not on meds, a few alcoholic drinks can ease the pain.

* When you're all ready to go out which can be exhausting in itself, lay down on the bed to recover for half an hour.

And do try not to think you are a burden, because to friends and family who care, you won't be, I can assure you.

Good luck, hope you do manage to get out a bit. x

Aly19 · October 2019

Thanks for your advice

I know so many have it worse and it's even more of a reason why I feel awful about complaining about the pain I'm in. Luckily a lot of my friends and family understand, or at least I appreciate that they try to. Unfortunately, I've lost a lot of friends through this too (but who needs them!

)
Definitely going to try and get out more, esp with xmas around the corner & look into SAD lamps - I think anything to lift my mood may also help with the pain x

WhileIBreathIHope · October 2019

Aly19 said:

Thanks for your advice I know so many have it worse and it's even more of a reason why I feel awful about complaining about the pain I'm in. Luckily a lot of my friends and family understand, or at least I appreciate that they try to. Unfortunately, I've lost a lot of friends through this too (but who needs them! )
Definitely going to try and get out more, esp with xmas around the corner & look into SAD lamps - I think anything to lift my mood may also help with the pain x

As others have said and a silent night alarm clock they are not great instructions wise until set up and a completely dark room at night and woken gently in the morning.

I too try as little prescription medication as possible as feel like a prescription medication junky- sadly any further reduction and I’ll be stuck in the house again.

True friends will adore/love you for who you are and while adapting to your disability may take them some time- they will continue to be your friends.

One of mine invites us over for dinner occasionally and checks ingredients with me or makes me a plain version with options to add to it.

good luck

EmmaB · October 2019

Hi @Aly19
Sorry to hear you've been in pain for so long but great to hear you are taking active steps to try and manage it, including getting off the meds, they don't work long term for most people anyway.
I wonder if you've every tried mindfulness? You might find this website interesting:
www.vidyamala-burch.com/
Her book mindfulness for health is great even for just understanding how pain works.
I hope you can just find a way of getting out more, maybe doing things where food/drink aren't necessarily the central focus? For example finding a club or activity you can do with like-minded people or something like Tai Chi, which is considered good for pain?
Good luck on your mission.
Emma

Chloe_Alumni · October 2019

Welcome to the community @Aly19! I am sorry to hear that chronic pain has impacted on socialising. Have you ever been seen by a chronic pain team?

Aly19 · October 2019

EmmaB said:

Hi @Aly19
Sorry to hear you've been in pain for so long but great to hear you are taking active steps to try and manage it, including getting off the meds, they don't work long term for most people anyway.
I wonder if you've every tried mindfulness? You might find this website interesting:
www.vidyamala-burch.com/
Her book mindfulness for health is great even for just understanding how pain works.
I hope you can just find a way of getting out more, maybe doing things where food/drink aren't necessarily the central focus? For example finding a club or activity you can do with like-minded people or something like Tai Chi, which is considered good for pain?
Good luck on your mission.
Emma

Thanks Emma,

I've been doing yoga when possible and I do try and get outside just for the fresh air when I can.. I must say this dark weather isn't making it easy though.

Aly19 · October 2019

Chloe_Scope said:

Welcome to the community @Aly19! I am sorry to hear that chronic pain has impacted on socialising. Have you ever been seen by a chronic pain team?

Hi Chloe,

I'm booked in to see them in March - only been waiting for 18months since initial referral *rolls eyes*

Fingers crossed it will improve my health.

Chloe_Alumni · October 2019

Oh I really hope you are not waiting much longer @Aly19!!!

Ails · October 2019

Hi @Aly19 and welcome to the Community. I too suffer from chronic pain in my hip and find that the damp weather can make it worse and on bad days do suffer also from getting out and about. I also have a great support network in my husband, family and friends, but get what you mean about the whole feeling like a burden thing. However, loved ones wouldn't help you if they didn't care about you and your happiness and am sure don't think of you as a burden. All of the above are great ideas! I take lots of painkillers too, but hate stuffing lots of pills into me so try to wean myself off at times. Glad to hear you are adopting an holistic approach and whatever works for you is fine. It has taken me a long time to realise that it is ok not to be ok as before I would always jump at some friends' requests to meet them when really I wasn't fit to go and most of them understand about my health, but have a couple along the way simply because they were getting fed up of me cancelling plans; but I just think it is their loss now! I find that when I have something planned that I take my time to get a shower and get dressed and don't push myself too much and having a wee lie down once you are ready is a really good idea. I often find that once I am actually at one of my clubs or an outing and I have been in pain before it that being out in company takes my mind off it and the pain fades a bit. If it has been a celebration of some kind or a lunch with a pal and there is a chance of a wee cheeky glass of wine or something then that has helped me too although if I know that I am going to have a wee drink somewhere then I stay off the tablets. I started Tai Chi a few months ago and find it has helped somewhat with my pain and I really enjoy it too. It's so therapeutic! I have done Yoga and Pilates in the past when I was in better health and these were good too. I have been at a Pain Clinic and the sessions are good in helping you to manage your pain a bit better so I hope you find this too.

Is there anything you do to pass the time at home if you can't get out? I find that knitting and arts and crafts helps me when stuck indoors to combat the boredom and upset at not getting out that I feel. Also being on the Community when I am stuck in too is a godsend and you can while away an hour or 2 on here chatting to and helping other folk. The Community is great for support!

Please don't be too hard on yourself as you sound as though you cope really well through it all. Feel free to chat to us anytime as that is what we are here for. All the best.

Aly19 · October 2019

Ails said:

Hi @Aly19 and welcome to the Community. I too suffer from chronic pain in my hip and find that the damp weather can make it worse and on bad days do suffer also from getting out and about. I also have a great support network in my husband, family and friends, but get what you mean about the whole feeling like a burden thing. However, loved ones wouldn't help you if they didn't care about you and your happiness and am sure don't think of you as a burden. All of the above are great ideas! I take lots of painkillers too, but hate stuffing lots of pills into me so try to wean myself off at times. Glad to hear you are adopting an holistic approach and whatever works for you is fine. It has taken me a long time to realise that it is ok not to be ok as before I would always jump at some friends' requests to meet them when really I wasn't fit to go and most of them understand about my health, but have a couple along the way simply because they were getting fed up of me cancelling plans; but I just think it is their loss now! I find that when I have something planned that I take my time to get a shower and get dressed and don't push myself too much and having a wee lie down once you are ready is a really good idea. I often find that once I am actually at one of my clubs or an outing and I have been in pain before it that being out in company takes my mind off it and the pain fades a bit. If it has been a celebration of some kind or a lunch with a pal and there is a chance of a wee cheeky glass of wine or something then that has helped me too although if I know that I am going to have a wee drink somewhere then I stay off the tablets. I started Tai Chi a few months ago and find it has helped somewhat with my pain and I really enjoy it too. It's so therapeutic! I have done Yoga and Pilates in the past when I was in better health and these were good too. I have been at a Pain Clinic and the sessions are good in helping you to manage your pain a bit better so I hope you find this too.

Is there anything you do to pass the time at home if you can't get out? I find that knitting and arts and crafts helps me when stuck indoors to combat the boredom and upset at not getting out that I feel. Also being on the Community when I am stuck in too is a godsend and you can while away an hour or 2 on here chatting to and helping other folk. The Community is great for support!

Please don't be too hard on yourself as you sound as though you cope really well through it all. Feel free to chat to us anytime as that is what we are here for. All the best.

Thank you for your words of support. It's just nice to feel im not alone in this and from these comments, I feel like people are coping similarly to me when it comes to being social, so that's good to know and encouraging.

I'm (usually) ok when its something like a coffee with friends or meeting earlier in the day, evenings I struggle with. Eating, in general, I struggle with so anything food-related is always a challenge. And unfortunately, alcohol isn't great with me either, so I tend to stick with soft drinks. I don't mind not drinking, it's better than being in pain and sick, but when everyone else is tipsy and I'm sat there sober, tired and generally feeling meh it does make me feel more isolated.

But I'm working on it and being more positive too

Han_ · October 2019

Hi @Aly19, thank you for your post!

I can relate to your experiences, isolated and lack of a social life. It is really difficult to get out there when experiencing chronic pain. Online communities like this can really help with the isolation as it offers you the opportunity to talk to people who can relate to your experiences on some level.

You are most definitely not a burden on anyone. Your needs may be different to others in their 20s who do not experience chronic pain and that's ok.

I'm glad to hear you are usually ok meeting your friends during the day. Can I ask what kind of things you do with your friends or when you do go out? From this information, I may be able to make some suggestions to help enhance your social life.

Aly19 · October 2019

@Han_

I think I'm really lucky in the sense that the friends who have stuck by me are quite happy just to go for a coffee and chat for a couple of hours, maybe do a bit of shopping if I'm up for it... nothing too strenuous. Also, I feel comfortable around them and so if I am in pain, I know they'll understand, & they're okay just to chill with me and do things I'm able to do, which is so lovely & I love them so much for that.

However, about 3 years ago now I moved away so only see them a handful of times a year, and I don't have really anyone now where I live (apart from my boyfriend) who I can talk to/socialise with. Meeting new people is a lot harder now. Explaining to new 'potential' friends that I can't do certain things because of the pain just add more anxiety and stress to an already stressful situation. It's not that I don't want to make new friends - in my head, I'm still the outgoing social person I was before, my body, however, just isn't - and that's what gets me down the most.

Tammyjane33 · October 2019

Hi @Aly19 thankyou for reaching out to us here on the site. This is a topic I feel I can relate to on a personal level /from personal experience and many others may be able to relate too so thankyou for bringing this topic up. I feel its important that people with chronic pain/illnesses get the chance to socialise like anyone else would. Obviously when you suffer with chronic pain or illness it can make it alot more difficult to just simply go out etc. It takes planning, depending on travel, getting there /location /if there is disabled access /if you are going to eat, the place has to be able to accommodate those who have allergies, for me it would be room temperature, how far the toilets are, and make a plan what I would do if pain comes, how would I take my medication and get home safely! So there is lots to look out but it's not our fault we are unwell so we just need adaptions to be put in place etc.

April2018mom · October 2019

zakblood said:

i'm 52 and have suffered with it for more than 20 years now, started in my back and now also in my hips, med only cover the pain, but then long term give you other issues, no or little use of bowel, bladder or failing kidneys, and yes it's all done on the meds side effects, just most don't read or think they will be on them long enough to do the damage, not all do, just a combo of some tbh.

depressants, well if your not on them beforehand, you maybe after a long time on the pain meds, as one thing leads to another, the light at the end of the tunnel is this,

one your not alone, and two, you can and will live with it, as there's plenty worse off, so chin up, grin and bare it, finds things that help and well not take the mind off it, just get used to it, then cope with what you can not can't do.

for me, hydro pools work, swimming does, light exercise, diet, bike riding if you get a good and special bike, as mines lower back and poor hips, i go for a flat ride and have a what's called a big bum seat, then have higher handlebars than a standard bike, can be adapted from a normal bike at any shop for little cost, around £20 fitted mine was, so my bum is in the right place, my hips work correctly and easier than a normal bike, then my spine is upright without me leaning forward putting pressure on my spine, be happy on the flat and if you get a mile, it's a bonus, after 20 years aim for 20, then you may on a good day do 8 to 10 which is my max.

cold is no good for us, wet and damp isn't either, then add on SAD, https://www.nhs.uk/conditions/seasonal-affective-disorder-sad/ which goes with the downers / depressants etc etc, winter overall becomes or can become something we dislike, but keeping warm, staying active and mostly fit, a good diet and tablets under control, i kind of like the seasons now, still hate the cold mornings, get migraines when the air pressure gets to a given bar, so make a plan, read alot lol and understand, there's always someone worse, so be happy with less problems https://www.healthline.com/health/headache/barometric-pressure-headache

in the end there is no other options than to get around it and live with it the best you can, don't take my word for it, as i've just had 20 years feeling sorry for myself and only just been told i'm work shy, which i thanked the person who said it at the council office as it made me realize that i'm not the burden which i've felt i was, and now are actively seeking work and doing something about it, not for her, not for me partner who has cared for me for the last X number of years,...

for me, myself and my dignity, get well soon and look after yourself, as no one else can do it for you, oh and welcome to the forum btw

How much did you pay for a adaptive bike? I am trying to find one for my disabled son with no leg movement. Recommendations wanted! Do I go to my local bike store or not?

April2018mom · October 2019

zakblood said:

i'm 52 and have suffered with it for more than 20 years now, started in my back and now also in my hips, med only cover the pain, but then long term give you other issues, no or little use of bowel, bladder or failing kidneys, and yes it's all done on the meds side effects, just most don't read or think they will be on them long enough to do the damage, not all do, just a combo of some tbh.

depressants, well if your not on them beforehand, you maybe after a long time on the pain meds, as one thing leads to another, the light at the end of the tunnel is this,

one your not alone, and two, you can and will live with it, as there's plenty worse off, so chin up, grin and bare it, finds things that help and well not take the mind off it, just get used to it, then cope with what you can not can't do.

for me, hydro pools work, swimming does, light exercise, diet, bike riding if you get a good and special bike, as mines lower back and poor hips, i go for a flat ride and have a what's called a big bum seat, then have higher handlebars than a standard bike, can be adapted from a normal bike at any shop for little cost, around £20 fitted mine was, so my bum is in the right place, my hips work correctly and easier than a normal bike, then my spine is upright without me leaning forward putting pressure on my spine, be happy on the flat and if you get a mile, it's a bonus, after 20 years aim for 20, then you may on a good day do 8 to 10 which is my max.

cold is no good for us, wet and damp isn't either, then add on SAD, https://www.nhs.uk/conditions/seasonal-affective-disorder-sad/ which goes with the downers / depressants etc etc, winter overall becomes or can become something we dislike, but keeping warm, staying active and mostly fit, a good diet and tablets under control, i kind of like the seasons now, still hate the cold mornings, get migraines when the air pressure gets to a given bar, so make a plan, read alot lol and understand, there's always someone worse, so be happy with less problems https://www.healthline.com/health/headache/barometric-pressure-headache

in the end there is no other options than to get around it and live with it the best you can, don't take my word for it, as i've just had 20 years feeling sorry for myself and only just been told i'm work shy, which i thanked the person who said it at the council office as it made me realize that i'm not the burden which i've felt i was, and now are actively seeking work and doing something about it, not for her, not for me partner who has cared for me for the last X number of years,...

for me, myself and my dignity, get well soon and look after yourself, as no one else can do it for you, oh and welcome to the forum btw

Thanks for the tips! My partner has CPRS and we found out in May this year. I will suggest he tries to do gentle stretches and exercises at work and at home etc. What meds are effective? He has a appointment with a pain management doctor next week to discuss everything.

How can I support him to be healthy? Are there any resources?

Aly19 · October 2019

Tammyjane33 said:

Hi @Aly19 thankyou for reaching out to us here on the site. This is a topic I feel I can relate to on a personal level /from personal experience and many others may be able to relate too so thankyou for bringing this topic up. I feel its important that people with chronic pain/illnesses get the chance to socialise like anyone else would. Obviously when you suffer with chronic pain or illness it can make it alot more difficult to just simply go out etc. It takes planning, depending on travel, getting there /location /if there is disabled access /if you are going to eat, the place has to be able to accommodate those who have allergies, for me it would be room temperature, how far the toilets are, and make a plan what I would do if pain comes, how would I take my medication and get home safely! So there is lots to look out but it's not our fault we are unwell so we just need adaptions to be put in place etc.

Totally agree - we need to think about our health first.. I just wish more people understood that. I feel like I have to hide my pain/illness most of the time. esp when in public. I don't really share much on how I feel etc and tend to hide it all away. I would like to be able to socialise normally but it is what it is. .

Han_ · October 2019

Aly19 said:

@Han_

I think I'm really lucky in the sense that the friends who have stuck by me are quite happy just to go for a coffee and chat for a couple of hours, maybe do a bit of shopping if I'm up for it... nothing too strenuous. Also, I feel comfortable around them and so if I am in pain, I know they'll understand, & they're okay just to chill with me and do things I'm able to do, which is so lovely & I love them so much for that.

However, about 3 years ago now I moved away so only see them a handful of times a year, and I don't have really anyone now where I live (apart from my boyfriend) who I can talk to/socialise with. Meeting new people is a lot harder now. Explaining to new 'potential' friends that I can't do certain things because of the pain just add more anxiety and stress to an already stressful situation. It's not that I don't want to make new friends - in my head, I'm still the outgoing social person I was before, my body, however, just isn't - and that's what gets me down the most.

It is really great that you have understanding and supportive friends. I'm sorry to hear that you are unable to seem them often since you have moved.

I understand the anxieties around explaining your health and barriers you may face when socialising. In my experience, people tend to be open and understanding when you explain to them about your health and are happy to adapt to your needs. They may need reminding or an explanation in a different way if they don't really understand. Also, they may know someone who is disabled or may have invisible disabilities themselves!

Chloe_Alumni · November 2019

Hi @Aly19, how are you doing today?

Being Social with Chronic Pain

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