To ask how you manage your chronic pain?

[DunravenBadger]

Sorry, posting here for traffic as I'm feeling very down, frustrated and fed up this evening.

Chronic pain sufferer for years but particularly bad at the moment. I can't take medication. So aside from medication, how do you manage it? I've been referred to the chronic pain team but expecting the referral to take months and I'm not sure what else to try in the meantime. My GP has advised me to walk every day and do gentle yoga.

I can't take baths, weirdly I always seem to get UTI type pain afterwards even if I don't use bubble bath. I'm not sure what else to try!

This evening is particularly painful and I just want to cry!

@endofthelinefinally oh gosh yes with the constipation. I used to take 2 x 30 mg cocodamol 4 times a day. Ended up with terrible haemorrhoids that never did properly heal. I only take it in emergencies now (like when I went cold turkey on pregabalin and hadn't slept for 3 nights due to pain). Ultrasound sounds interesting, I'll check it out.

That's great @LifeBeginsNow it helped with pain afterwards. I've managed to dig out my TENS machine so I'm happy

That’s a lie sometimes I will take pain relief at night occasionally if I’m hurting but not during the day anymore... but I haven’t felt like I’ve needed to in the day since I accepted I can’t do as much as quickly as I used to

I'm careful to eat loads of fruit and drink lots of water if I take codeine (very occasionally, mainly tooth pain or after surgery).

Has anyone mentioned good shoes? I am very fussy about what I wear. It has to have a crepe/rubber sole for shock absorption. Makes a huge difference. Doesn't help in the style stakes, but at least I can walk!

Heated seat is a wonderful thing- my car has one, and I never want to get out!

@DunravenBadger

Thanks all I have hypermobility so I'm frustrated it causes so much pain just from having bendy joints. I feel like I should be able to manage it just from exercise/ yoga/ strengthening etc but I can't.

Part of the issue with medication is we want to start ttc next year. My GP basically said she doesn't want me on any medication plus I have to be off the meds I was previously on for a while before we can start.

I know what you mean about cocodamol weaning for chronic pain clinics. A friend was told they'd have to increase his cocodamol levels dramatically before they'd consider a referral- which is crazy! He wanted to learn how to manage without the cocodamol he was taking occasionally, not increase it more before getting help!

Any advice on the acceptance side of it?

I'm hypermobile also. Pain and painkillers were part and parcel of the years. I do weight training now, I figured if I was going to ache and hurt anyway it was going to benefit me. I find the more time goes on and the more muscle I build the more supported my joints are.

There are some moves I tend to avoid but it's more better now since I started it. Those stupid little injuries are much less.

Just saw your post after finishing a 7 week pain management course today (NHS). Referral times weren't too bad here (NW) but have been waiting for the course to start for a while, as they have had to set up the remote version of it.

For me, the top things are:

• Taking duloxetine (reduces nerve sensitivity), tried several painkillers that didn't work for me
• A good private physio who has assessed me and given me targeted exercises
• Yoga (trying a new 3 x a week routine)
• Mindful breathing regularly
• Pacing myself and not taking too much on

I have done a lot of reading around pain and while you wait for support from an NHS clinic, there is lots you can learn yourself. Would highly recommend:

The Meaning of Pain - Nick Potter
Mindfulness for Health - Vidya Burch
Dr Chatterjee's books and podcast - In particular Feel Better in 5 and The Four Pillar Plan

I also have some video clips from the course I can send on. DM me if you want more resources - don't want to overload you.

@picklemewalnuts ooh yes on the good shoes. I live in hiking trainers or Doc Martens with good orthotics. Haha on the style - I actually wore trainers on my wedding day because of the hypermobility. I thought I wasn't going to be in pain just because of societal expectations of being stylish
Heated car seat sounds amazing! I'll have to look into whether there's any sort of cover or anything I can get for my seat that's heated as that would be fantastic in the winter.

@gamerchick that's great and sounds like yours is well managed. How long did it take before you saw the benefit?

That makes sense @CoffeeCreamandSugar

Sorry @ritzbiscuits cross post. Which Yoga are you doing? No courses running in my area so I've just started doing Yoga with Adriene and just avoiding anything that causes excessive pain. I'll check out the reading material and will probably end up messaging you soon if that's okay. Thank you!

I do Yoga with Adriene, her targeted upper/lower back ones are good. I also did a really nice 10 min wind down bedtime one last night. The sciatica one is excellent and very gentle, good for lower back too.

Yes, please message me when you're ready. No problem at all.

I have EDS and fibro and possible inflammatory arthritis (yay).

I would seek a second opinion on the meds and TTC. I take amitriptyline and co-codamol for fibro, and Fostair, salbutamol and Montelukast for asthma. My GP has said the only one I can't take in pregnancy is the co-codamol due to the codeine. Lots of women have to take some meds in pregnancy (I'd be screwed without my inhalers) so it's about finding what's safe and what isn't. Some meds are an absolute no-no and some are allowed if the benefits outweigh the risk. The bumps website has some useful info on meds in pregnancy.

Aside from meds, I have found physio and hydrotherapy helpful for improving my strength. I don't do yoga on physio advice as I'm already too flexible so don't need more flexibility. Apparently pilates is meant to be better than yoga for the overly bendy, will try it when I've recovered from my current injuries.

I love a microwaveable heat pack, really soothes sore and aching muscles. I use mine in bed to help me sleep and keep it on my side of the bed so DH doesn't overheat. I have an electric back massager which is good too. Pain relief creams can be useful, things like voltarol and movelat. I'm allergic to anti inflammatory drugs but can tolerate small amounts of the creams - great for when a specific joint hurts.

Good sources of distraction help, a good book, a good computer game or a funny tv programme - whatever works for you.

If you work from home or have an office job get a decent chair. My employer went to OH and I have a great petite chair with good lumbar support and a head rest which has helped loads.

Heat pads
Tens machine
Mindfulness
Stroking Dcat
Gin

I don’t like mindfulness at all for chronic pain. I know it comes in different forms but all the ones I’ve tried involve you becoming very conscious of every part of your body. The very last thing I want to do is lye still and think only about what my body feels like. It’s very good at reminding me how it feels

Tai chi is good, plantcase! You slow down and focus on breathing etc, and relaxing, but are focused on the moves not the body if you see what I mean.

A hot water bottle is the only thing to ever soothe my pain. I take them absolutely everywhere I go including when I go abroad. They're the only only thing to help

I have severe chronic pain.
I used to use heat, pacing, mindfulness, breathing exercises and a lot of painkillers. Now I have a spinal cord stimulator (a bit like an internal tens machine) Best thing ever - I can actually sleep a full night now!

I can only echo what’s already been said -
Heat
Tens (I’m also getting a heated Tens for Christmas - exciting times!)
I go to bed quite early as lying down is the comfiest.
I have been working very hard on my that my pain is not causing me damage iyswim - I’m sorry I don’t know enough about your conditions to know if that would be true for you? I don’t do anything stupid, but it’s not like I’m trying to run a marathon on a broken leg! But I stand there like an idiot telling myself that I know it hurts but I’m ok.

i have psoriatic arthritis as well as some osteo in my knees and spine. i do take meds and have a buprenorphine patch but still have a lot of breakthrough pain.

i have a heated throw (£50 from Amazon, my best purchase of the year), i try to remember that i need to rest when things are bad, but the most difficult part is accepting that i’m disabled. i use a crutch to walk and it took me a long time to accept that i need it.

i try and do stretches every day (when i touch my toes which i can do as i am also hyper mobile, my spine sounds like a bendy straw being pulled straight) and in this weather keeping warm is important.

i’ve been waiting for 3 years now for hydrotherapy and hand therapy. i take methotrexate for my arthritis but that seems to be as far as Rheumatology will go.

short answer: heat and rest.

Reading with interest. I struggle with this. I haven't found any app or mindfulness any help at all.

Hot water bottle
Acupuncture
Weed
CBD oil

I've just thought of something else that helps. Someone mentioned tv but I think specifically something you've seen many times before is the key. It creates a strong comfort in a nostalgic way but it also requires much less concentration than watching something new.
I use my phone in bed to watch 4OD as there are loads of series to choose from on there.

@LifeBeginsNow I do that too put on a Disney film on my phone if the pains really bad in the night.

@PinkPlantCase that interesting your experience of mindfulness. I can understand if something like progressive muscle relaxation might be annoying to you, but I've found breath focus mindfulness excellent.

Just focusing on your breath and doing 3-4-5 breathing is good to help keep me calm and settled. Could be worth a try

That's really interesting @LifeBeginsNow I actually already do this. I thought it was just me being weird but what you've said makes sense. I do it with films and audiobooks and it does help quite a lot.

@PinkPlantCase yes stuff like progressive muscular relaxation I find makes it worse but I find Yoga quite a mindful exercise so that sort of thing helps rather than standard mindfulness for me.

Sometimes a really good cry works.

Can anyone recommend a good cbd vape juice? I have chronic back, hip, leg, foot pain and I've been thinking about trying this but don't know what would work.

I have regular sports massages and during lockdown was doing Pilates classes on Zoom which was great!

@gamerchick that's great and sounds like yours is well managed. How long did it take before you saw the benefit

A couple of months at 3 X a week. Now I'm at 5x a week and pain episodes are so much less I'm surprised when I get one. It's definitely worth the effort.