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!

Hi OP I found a big part of the acceptance being that I stopped hoping that a doctor would fix me.

Over the years I’ve had referrals, nerve block injections and different medications it became clear that medicine just doesn’t really know enough about chronic pain right now, so the best thing for me would be to get on with my life.

Easier said than done, I can function fairly well with my background level of pain and can generally manage flare ups with pain killers. A bit harder now I’m pregnant.

I’ve got quite good at being able to accept when it’s really really bad that the time will pass, it’s temporary. I just have to get through it and tomorrow the worst part of the flare up will be over, or in an hour pain killers will take the edge off it.

Something that was a bit of revelation to me was that I stopped doing things that reminded me of it. Eg. Over the years I’ve done yoga and Pilates because I thought it would help. It didn’t, if I did yoga on a Tuesday I would really hurt until the Saturday, then I would do yoga again a few days later (I did this for about a year to see if it would get easier). All it would really do was remind me how much it hurt.

Or I had a few years of having monthly physio/accupuncture. Aside from being expensive the focus on someone trying to fix me and talking about how it had all seized up again from the previous month and how much pain I was in afterwards, it just wasn’t productive. I’m so much happier now I’ve packed it in.

Do try to keep active if you can. On a normal day I can go for walks because they don’t make me worse, I appreciate the things I can do

In other news hear and a TENs machine can be really helpful. I had a heated blanket once and that was HEAVEN can’t have it now as it would cook my DH

I think acceptance is really important, and something the pain clinics often get beaten up about - but if you have a chronic condition you are going to be in pain and chasing a pain free life is only going to lead to doing less and less and taking more and more medication.
I have CRPS and bone pain from the severe injury that led to the CRPS, plus overuse pain on the other side.
I've done gabapentin, lyrica, tramadol, CBD oil, acupuncture etc etc etc but try to only use CBD/tramadol now when pain gets in the way of sleep. The best thing for me is doing sensory integration work, either in the formal exercises or for me the best thing is swimming as the whole body sensation really down regulates the pain pathways. Cold water swimming is bizarrely really good for this and has helped my nerve pain hugely

@PinkPlantCase a heated blanket sounds amazing! Sadly my DH is the same and would hate it as he would overheat. Never mind.

Oh gosh I miss swimming! It was amazing for my joints. It doesn't feel safe atm though and really hard to book a session at my local centre.

That's interesting about swimming, CMOT. I'll have to have a try. I like warm water for hydrotherapy exercises.

Has anyone mentioned Acupuncture yet?
In all seriousness it has not been clinically proven to be one of the most effective pain management treatments for chronic pain.
in all likelihood she will need several treatment before anything starts working as you've had it for a long time. But it is fucking amazing.

Sorry acupuncture HAS been clinically proven!!!

Can recommend Pain is Really Strange https://www.amazon.co.uk/dp/1848192649/ref=cmswwrcppapifabcc_tZj2Fb22KFY56

Acupuncture gave me temporary relief but my body would just go back to how it was before.

Glad to hear it’s helped some

Hugely important thing about acupuncture also to get it from acupuncturist and not a physio you only have to do a few poxy weekend courses to practice where is an acupuncturist does a full three year BSc.

I also have hypermobility, the biggest difference for me was learning what exacerbated and either style doing it or reduced it/found work arounds.

IME painkillers don't work to well for it anyway, so now I use them as rarely as possible and take them knowing they will do very little, maybe just take the edge off.

I've also got better at realising that certain joints being painful set others off. Eg. Sore neck leads to sore back/shoulders and migraines. So I focus my attention on them first. Voltarol gel works better on my hands, especially if combined with warmth and/or compression gloves. Cooling tiger balm is good for neck pain. Warming tiger balm is good for elboqs/shoulders.

I never found acupressure helped me, but massage does (cannot wait to treat myself to a deep tissue massage once this is over).

Baths are painful to get in and out of, but a hot shower helps, especially if I put the shower on jet setting and aim it at my lower back/hips.

I find rolling a towel up tight then lying on it with it aligned against my spine eases the back pain a little.

I'm finding the pain is higher when I'm cold, so take extra care in winter.

Agreed with acupuncture you also need to keep it up. Usually it's good to have it load of sessions on a weekly basis and then top up sessions every month going forward

I have fibro, currently waiting for tests to see if it's EDS, and managed by the pain management team.

I was on medication but ended that as soon as I got my BFP. Its not been fun with the stresses of pregnancy plus my fibro while also coming off medication but it's not been worth the risk for me.

Warm baths are my go-to but obviously not a good suggestion for you! How about getting a plastic chair to sit and "soak" in a hot shower? I sit down for a lot of things "normal" people don't, cooking, laundry, etc. Prevention is much better than curing pain. I also have a walking aid (crutch) that I use out of the house.

I have a weighted blanket for when I'm sat on the sofa, and I love it - can't deal with it when sleeping at night though. A heated blanket would also work, again I'd probably only use it for being awake (sat at my desk/in front of the TV).

I have a pregnancy pillow which helps with my sleep. I also have a TENS machine which works.

Massage always worked well for me, but that's been limited with covid and now pregnancy.

Strengthening exercises will likely work better for you than flexibility exercises like yoga, you'll want to build up the joints to add stability. But the mental side of yoga, mindfulness etc will also be helpful.

Good luck!

I've got severe Rheumatoid Arthritis, apart from strong painkillers, the only way I manage the pain is try to sleep. I get to the stage where I am so exhausted with it, I basically just pass out. No other way I've found yet.

a heated blanket sounds amazing! Sadly my DH is the same and would hate it as he would overheat. Never mind.

Most electric blanket which go on your bed have controls on each side, so you can I use heat on your side and not on your DH’s side. Or buy a single size and just put it on your side.

If it is a loose blanket for the sofa then just don’t put it on your DH.

You do seem to have a bit of a defeatist attitude and are dismissing many suggestions. Ultimately, if you want improvement you have to put the effort in, be willing to try things and make compromises.

Download an app called Curable.

It changed my life, from a long-term chronic back/neck/shoulder pain sufferer, to rarely needing a painkiller nowadays.

It works on the theory of the mind-body connection. Some people have already mentioned up-thread that chronic pain often often stems from over-sensitised nerves. Pain/neural pathways that get 'stuck'. The more you focus on the pain and look for solutions/medication/treatment, the more it persists.

The app uses various techniques such as meditation and some content is free. I paid up for a year after finding that it was having an effect very quickly and have never looked back.

Another vote for CBD. Unfortunately the levels required for pain relief tend to be much higher than the standard doses for anxiety or sleep. So you need to get a very concentrated full-spectrum oil (ideally 15%-20%) and it's expensive. However it's worth a try even as a breakthrough or complementary treatment. CBD has relatively few side effects and low toxicity, significantly less than prescription medication & painkillers.

Also make sure the drops are taken under the tongue and left to absorb directly into the bloodstream. Most complaints about CBD not working are due to too low doses or because the oil was ingested and it's not well absorbed through the stomach.

I have fibromyalgia and hypermobility syndrome. Monthly osteopath treatment makes a massive difference for me, alongside medication.

On trying to conceive and medication - doctors will always tell you to stop meds, but this is because when they look up a particular medicine on their website they is no data available, rather than there being a proven negative effect on a potential pregnancy. I did cut down my meds drastically when pregnant, but not completely. I saw a specialist midwife, who basically said a stressed out mother to be in pain is as detrimental to the pregnancy as low dose meds. I took amitryptaline throughout pregnancy with no issues. So if you can't manage without any meds, ask to try safer alternatives or speak to a specialist.

I have severe joint pain and painkillers don't work for me. Heat packs, ice packs, local ultrasound ( I have little machine), massage, swimming (but only if the water is warm) all help. I know hydrotherapy would help but I am not allowed it.

• because I am not disabled enough
• because of covid.

If I could afford a hot tub I would love one. If I could afford CBD consultation/ treatment I would definitely go for it. I have exercises from my physio to do and I walk as much as I can. A comfortable memory foam topped mattress is essential.

Thank you so much all.

@MaskingForIt yes I can see reading back through my posts how it comes across as defeatist. That's really not the case but I can see how it comes across that way.

I found yesterday evening was a lot better after I went for a walk in the afternoon. I also have a heated chair which is a godsend at the moment.

@endofthelinefinally totally agree on memory foam mattress. We've actually got a temper mattress and it's amazing! Can't be without it now I'm intrigued by the ultrasound. How does that work?

Are TENS machine safe when pregnant? Obviously not an issue at the moment. I'll have to dig mine out. Thinking longer term though and hopefully getting pregnant but no clue if it's safe.

Totally agree about medication and GPs @sohypnotic. Pregabalin has been proven to cause issues to the developing foetus but yeah I'm sure there are others that are fine. I'd love to find a way of managing without painkillers though.

You can hire the tens machines from the Tesco pharmacy if you want to check it out before you buy one.
I find it's not one thing that helps so having many solutions can keep you going. What works one day, frustratingly doesn't the next.
I'm pregnant and had already come off everything but paracetamol. I've just been prescribed codeine (15mg not sure if that's strong) and I take 2 a night to help with sleeping through the pain. Its having about a 1 in 3 success rate but those nights I sleep are amazing!
I made a comfort box previously so when I'm in bed/ sat on the sofa in agony I can grab it for some soothing. I had colouring books and pens, lavender spray, chocolate eclair sweets, etc.

@LifeBeginsNow I've actually got a TENS machine somewhere. That's great Tesco do them for hire though. Are you okay using it now you're pregnant? Your box sounds fab ❤

Yes you can use it in pregnancy. I hired it specifically for the labour (I didn't end up using it though but used it to manage pain afterwards).

Ultrasound is popular for joint pain in Asia. I got my machine from Amazon after having treatment in a rehab clinic when I was visiting family. I cant do links on phone, but it comes in a case with gel, it is rechargeable and has 3 settings. You just move it around over the joint. It does seem to help. It isn't popular in the west as far as I know.

Codeine makes you terribly constipated. You need to take movicol regularly with it.

By letting myself rest. I used to push myself far too hard but it was never worth it as I’d crash and be bad for days. I don’t take any pain relief anymore so that I can read the signs when I’m doing too much. Pain relief masked it so I would try to do more as I felt I could but in reality I couldn’t and it was just the pain relief.

I also find short bursts for cleaning etc is helpful