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!

I have chronic leg pain and I find heat really effective so wrap them up in an electric throw blanket when the pain is bad.

Heat packs (or ice if that is your thing).
Apply Voltarol gel to the affected area.
Yoga/stretching/physio.
Osteopath (if appropriate),
(Sports) massage (if appropriate)
Self-massage, using rollers/spiky balls.
Watching ASMR videos to create a distraction.
Have a medication review with your GP. It seems unlikely that there is really NO medication you can take.

I found the pain management clinic to be quite useful in some aspects, but a lot of it seemed to be set up for weaning people off co-codamol etc, which presumably won’t apply for you.

Read up on pain theory. Google Lorimer Moseley and read some of his work or watch his videos. Look into the “pain management tool kit”.

Acceptance is also a large part of it. Chronic pain is often caused by highly over-sensitised nerves. Just because it hurts doesn’t necessarily mean something is wrong.

I find pain management to be about “marginal gains”. Nothing cures it, but each little thing might cause 1-5 % improvement but if you do 10 things you can create a noticeable benefit. The downside is that a lot of my free time is spent managing pain!

Yep. It's all about those marginal gains. This week, with the onset of very wet and very cold, it's also about moving it around a bit.

Currently my left buttock and front of left thigh are fucking murderous! But earlier it was left knee and ankle, harder to walk on.

Later it will be all of the thigh, it will feel like a lump of concrete with a heavy pulse, maybe shooting pains into the ankle and I'll have to find a way of sleeping through it.

Hot showers help, sometimes. But mainly it's more about enough of the right kind of movement during the day. Stretching helps some days, not others.

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?

Mindfulness helps, also yoga and heat packs in my vase. Would topical ibuprofen be useful ?

• case, I dont keep heat packs in a vase

It really does matter what your pain is being caused by and why you cant take medication and also what you can’t take!

I’ve lived with chronic pain of various types for nearly 20 years, Fibromyalgia which has been helped by a gluten free diet, use of vitamins to correct my underlying anaemias as they can cause pain in themselves,
Use of heat therapy and stretching gently

In the last 3 years I’ve gone on to develop severe facet joint arthritis, I’ve found yoga very helpful for this

Along side I do use medication and when my back is in spasm TENS, I am very restricted in drug choice due to allergy/asthma etc but find nortriptyline at night helps with sleeping

Other than that as others have said attitude is the main focus, my illnesses have robbed me of my career, ironically I was a nurse specialising in pain management!

Now I try to focus on what I can do rather than what I can’t, I spent 5 years using a wheelchair and walking sticks, now I’m just proud I can walk but accept in the future I will decline again

I would rather live 100% of my impaired life rather than have a full life but not live it to the full, look forwards not back unless it’s to celebrate how far you’ve come

It really comes down to how you want to live your life, I choose not to be a victim of my health

OP do you have hypermobility spectrum disorder? If so, yoga isn't a good idea and may be contributing to your pain?

I try and look after my inner child. I feel I have ignored my own needs for years in favour of pleasing/caring for everyone else. Now when something hurts instead of powering through as I have always done, I 'notice' it, give it a rub and a pat, and make myself something soothing like a hot chocolate. Basically being kind to myself. It's how we teach children to regulate their pain, so I'm just relearning it.

Acceptance- I recognise something hurts, check there's not a hidden underlying cause like a tight sock or whatever, then accept that today's ache is x. It may or may not be gone by tomorrow. I can't do as much as I have in the past, but I can enjoy many more sedentary things. It's ok to be limited in what I can manage on any given day, and it's ok to find things I can get enjoyment from.

Obviously if I weren't suffering this condition I'd be running marathons in the rain and turning somersaults in the snow, but I have reconciled myself to that!

Sorry, posted too soon!
*yoga isn't always a good idea..... Are you using a teacher that knows your limits?

And I do Tai Chi to increase strength and stamina. Yoga is no good, I can overdo it too easily.

This may unhelpful but I would talk to someone other than a GP about meds and TTC. They are often very risk-averse and tell people to come off meds for no reason.

Sativex. Bloody amazing stuff and should be available to more people.

Have you tried CBD ?

@mynameiscalypso

This may unhelpful but I would talk to someone other than a GP about meds and TTC. They are often very risk-averse and tell people to come off meds for no reason.

Agree with this. As a pregnant (or hoping to be) woman you will Ben endlessly infantilised by medical staff.

Sure, we’d all like our bodies to be medication-free, organic, free-range temples before TTC, but being mobile and happy is important too.

They’ll tell you how important oxytocin is in pregnancy, and how bad cortisol is, but if you’re in pain that’s probably doing you more harm than some medication.

I was recommended to keep taking my usual medication (cocodamol, naproxen and diazepam as needed) until I actually conceived, and then stop. If I need to, I can still take diazepam, but haven't actually needed to (relaxin FTW!). I have been taking amytriptyline the whole way through.

I have EDS and other than pain medications my main go-tos are massage and distraction.

I ALWAYS have to distract my brain - like by reading something or doing something. I got into various crafts, but things like diamond painting or colourful - just simple repetitive things can give my brain a break, and otherwise I focus in on how crap I feel.

For me my muscle spasms are the worst so I work with a really good therapist who also does stretching for me - which I find hard to do myself as it takes a lot for me to feel the stretch.

I have tried CBD oils but they didn't work for me sadly.

Generally for most people it's a combination of things.

Try the Pain Pack on Headspace (meditation app) - Don't knock it til you've tried it

Of course you don't have to divulge the specifics OP but without knowing what type of pain it is and where it's difficult to advise really.

I have EDS and several other conditions that cause me chronic pain. I'm under the care of the community pain team, have seen pain management at guys and St Thomas on a couple of occasions and tried varying medicines, physio, pain relief and DIY tactics. What works is personal and usually fairly specific.

I have to say I find it a bit odd that your GP would seek to comment that she 'doesn't want you on' ANY medications. That isn't really in her remit. What is the rationale? Many are perfectly safe and wont affect a pregnancy or ttc. I would be more concerned with pursuing a proper diagnosis and managing pain effectively where possible prior to actually getting pregnant to be honest. A pregnancy can be a real toll on a hypermobile body and unmanaged pain often alters the brains responses to how we feel pain, which means we become more sensitive to it over time and can experience more of it.

Cocodamol is unsuitable for long term pain anyway, but there are many other options. Generally I'd ask for a physio referral, and further investigation into things like the 'UTI' type pains you mention- have you seen urology for a review, for example?

Acupuncture, acupuncture, ACUPUNCTURE!

Whew! I honestly dont understand why this isnt mentioned more often or offered much by the nhs. Its really good for systemic type pain - i found it helpful for both rsi wrist/arm pain, and really bad gut pain (stabbing cramps, twisty aching type stuff). There is definitely something in the idea of different nerve points being linked to parts of the body/emotions. One time i had an awful headache focussed in the temples, as soon as one of the needles went in the headache moved instantly to the back of the skull, it was really strange but apparently common. Also one point, i was absolutely fine then the needle went in and a huge wave of emotion came over me and i was holding back tears (of emotion, not pain!). This is very common too with that point!!

Anyway, yeh, really good for pain relief imo. The needles themselves dont hurt and are tinier than an injection, quite often you dont even know they've gone in! Otherwise I'd recommend mindfulness and similar stuff, maybe cbt? Good luck - its so hard living with pain or constant illness!

Oh also, ive found a low dose of amitriptyline really helpful for uti type feeling/bladder pain (its not actually a uti, just feels like it!) - apparently its particularly good at dulling nerve pain for bladder area, but can work elsewhere too. Cant remember how it works, but a lot of the pain i have is likely to be hyper sensitive and overstimulated nerves and apparently the amitriptyline helps dull this?

I also take amitriptyline. It sedates overactive nerve endings, and helps with relaxation so I sleep much better.

Morning all. The pain is generally confined to my lower back (this is the worst area, wrists, forearms, shoulders and neck. Basically my upper body for the most part. If I've overdone it then I'll also get ankle pain although this is a lot better since I had orthotics a few years ago.

Re TTC and pain meds. I was on a very high dose of pregabalin. The GP advised me it would take 6 months to come off as I've been on it so long (decreasing by a small amount every two weeks) so I'm still on it but decreasing.

Before I got the hypermobility diagnosis I wasn't on any medication so I don't know if I just coped better then, if my hypermobility has gotten worse or if I've just become so used to medication. Although I do recall back then being in a lot of pain and forking out a lot of money for private physiotherapy.

I haven't seen urology for the UTI type pain. I only get it after a bath so haven't spoken to anyone about it.

I would be more concerned with pursuing a proper diagnosis and managing pain effectively where possible prior to actually getting pregnant to be honest

I've got a proper diagnosis. But yeah this is why I'm trying to sort it now as I want to be able to cope with an actual pregnancy. I'm hoping all these little bits and bobs can add up together to help plus anything extra the chronic pain team can advise me on.

@curiouscat1987

Acupuncture, acupuncture, ACUPUNCTURE!

Whew! I honestly dont understand why this isnt mentioned more often or offered much by the nhs. Its really good for systemic type pain - i found it helpful for both rsi wrist/arm pain, and really bad gut pain (stabbing cramps, twisty aching type stuff). There is definitely something in the idea of different nerve points being linked to parts of the body/emotions. One time i had an awful headache focussed in the temples, as soon as one of the needles went in the headache moved instantly to the back of the skull, it was really strange but apparently common. Also one point, i was absolutely fine then the needle went in and a huge wave of emotion came over me and i was holding back tears (of emotion, not pain!). This is very common too with that point!!

Anyway, yeh, really good for pain relief imo. The needles themselves dont hurt and are tinier than an injection, quite often you dont even know they've gone in! Otherwise I'd recommend mindfulness and similar stuff, maybe cbt? Good luck - its so hard living with pain or constant illness!

YES!

NICE now recommend acupuncture treatment for chronic pain www.nice.org.uk/guidance/GID-NG10069/documents/evidence-review-7

Of course, the NHS won't fund it but if you can afford it I would really recommend it.

Five Element acupuncture is probably the best for chronic pain as it treats the cause rather than the symptoms. You can find a good one here

www.theacupunctureacademy.org.uk/practitioners

I have fibromyalgia and have chronic pain, I find vaping CBD works wonders. You have to do it regularly but it is just amazing

Heat pads.

Joining a Facebook page for my particular condition to get specific advice and sympathy