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Chronic Pain..how do you cope?!

43 replies

peachcherries · 11/05/2021 10:20

Title says it all really! How do you cope whilst in pain?
Right now my pain levels are really high.
I have several autoimmune diseases and Fibromyalgia (which I fail to accept) which are mostly well managed but the last few months I've pain in most joints and muscles.
Zapain isn't cutting it this morning and it's all getting me down.

OP posts:
SophieB100 · 13/05/2021 22:50

I have Fibro
What helps me - keeping my weight down, I lost 4 stone 2 years ago, and it helped enormously. Am now a healthy weight, and the stress on my joints is far less.
Keeping warm - I feel the cold, and am rarely warm enough - so heat pads, wheat bags etc all help.
Lots of rest - I'm busy and active, but make a habit of never doing too much - so if I'm gardening, I stop half an hour before I feel really tired.

I also take CBD capsules which help, and codeine/paracetamol when it gets too much. Voltarol gel helps too. I try and stay positive - I have Fibro - it doesn't have me!

picklemewalnuts · 14/05/2021 08:18

Ah @Gilead that sucks! It's a bugger. I occasionally pop a disk or get a spasm in my back. I was crying in the shower because I couldn't get out. It's exhausting because of the planning you have to do to avoid pain. On the shower occasion I couldn't get over the lip of the shower and step down to the floor. I was wet and cold and too weak to get my heavy towelling robe on. I stood crying leaning on the wall trying to slide down and out of the shower.

I hope you are feeling a bit better today, and that you get some effective strategies sorted out.

Excilente · 14/05/2021 09:36

@Gilead

I wish I could be as stoic as some of you. I got stuck again yesterday, made me Yelp whenever I tried to stand (was on the loo). I’m fed up, the doc says increase the Tramadol, but I have severe UC and am waiting for bowel removal. Feeling weepy and can’t win today and have nobody to talk to. I always tell everyone I’m fine!
we all have days like that.. its very much.

i'm fine
i'm fine
i'm fine
i'm fine
i'm fine
I'M IN PAIN AND THIS SHIT HURTS AND I'M SO SICK OF THIS AND I CAN'T BELIEVE THIS IS MY FUCKING LIFE I DONT WANT IT TO HURT ANY MORE AND I CAN'T TAKE THIS SHIT MUCH LONGER
i'm fine
i'm fine...

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DarkedOn2219 · 14/05/2021 10:05

I was diagnosed as a teen. Fibromyalgia and Chronic fatigue, arthritis knees and hips and repetitive strain injury, TMJ, migraines, IBS, various allergies. I've never been able to take regular pain medication of any kind, my body reacts badly to conventional pain killers and neuropathic pain treatments haven't worked. You kind of get used to it. Not that it's not really hard and it's cost me a lot, but it does become less encompassing. Especially if you have a really strong reason for going on.

We have 3 Autistic DC, DH works and everything else is on me, therapy, school, house, looking after toddler. If DH carries more of it, the way he reacts is not something I ever want to put my kids through again. Fear is a good motivator. I push through because my kids would suffer otherwise. I take a high dose of a sedating medication so I can sleep eventually. Sleep keeps me sane. Currently it's a 6-7 mostly when I wake up and 8-9 by the evening. By the evening I want to hide in the bedroom, lights off cause they hurt my eyes and cry quietly. When it's this bad my mind sort off dissociates from it, the pain pulses in and out and my brain feels fuzzy. I can keep doing the stuff that needs to get done, but the cost is high.

goodnessidontknow · 14/05/2021 10:36

Acceptance is a huge part of coping with chronic pain unfortunately.

Otherwise, I live with heat pads and my Tens machine. I couldn't function without the Tens particularly but like others I also struggle with cold so keeping things warm is always high priority. I get funny looks when I'm in the office with a fleece over my knees when it's 25 degrees but I don't care!

Pacing is really important, learning about your body and listening to it is key. Exercise is a difficult one but I try and do at least some gentle stretching every day to keep things moving.

DarkedOn2219 · 14/05/2021 11:07

I'd be surprised if anyone with chronic pain had never had days like that. Everything hurts so fucking much. Once kids are asleep I'll lie on my heatpacks and cry till my medication kicks in and I fall asleep.

I did a lot of railing at god about the pain and the unfairness of getting that as a teen just after I lost my sister. 20 plus years on I'm resigned to it. If it was just me I'd stay in bed for 6 months till it subsided. If I had a supportive partner and DC didn't have SEN I'd be resting as much as possible. But it's honestly less costly to do it all myself rather than having to deal with H behaviour if he thinks he's doing too much. It takes time to build up a tolerance for it, to learn to shut it out a bit. 18 months ago when I got suddenly worse again I did a lot of the railing at fate and God, and the crying and anger and beating myself up. You'll find a way through OP, but it takes time to find that and to learn to live with it.

Gilead · 14/05/2021 13:38

Thank you, you’re very kind. 💐

NameChangeChronicPain · 14/05/2021 19:26

@DarkedOn2219

I'd be surprised if anyone with chronic pain had never had days like that. Everything hurts so fucking much. Once kids are asleep I'll lie on my heatpacks and cry till my medication kicks in and I fall asleep.

I did a lot of railing at god about the pain and the unfairness of getting that as a teen just after I lost my sister. 20 plus years on I'm resigned to it. If it was just me I'd stay in bed for 6 months till it subsided. If I had a supportive partner and DC didn't have SEN I'd be resting as much as possible. But it's honestly less costly to do it all myself rather than having to deal with H behaviour if he thinks he's doing too much. It takes time to build up a tolerance for it, to learn to shut it out a bit. 18 months ago when I got suddenly worse again I did a lot of the railing at fate and God, and the crying and anger and beating myself up. You'll find a way through OP, but it takes time to find that and to learn to live with it.

Acceptance is definitely a big part of it. For me I found it only came about seven years into it when we’d ran out of surgeries and procedures and exhausted the pain clinic painkiller ladder. Until that stage I think I believed at some point we’d find the answer as to what was causing it, and a solution. I would wake up from exploratory surgeries hoping to god they’d found something serious and then burst into tears when it all looked healthy.

Once I realised there’s no cure, not much of an explanation, and that this is just how life will be permanently it was a bit of a relief. Kinda nice not to have to be constantly at appointments. Just a huge daily dose of morphine, litres and litres of water daily, regular antibiotics and try live your life the best you can.

It’s a fine line between acceptance and allowing it to define you. I accept it and try not to see my bladder as my adversary, but refused for it to become a part of my identity. Most people who meet me have absolutely no idea I’m wandering around taking the kind of dose of morphine that would put opiate naive people in the hospital. I only tell new friends if it comes up in some respect. The only thing that angers me about it these days is experiencing judgment and stigma occasionally from clinicians who really should know better.

sweetkitty · 15/05/2021 06:12

Currently unable to sleep it’s knees and ankles turn tonight Sad

What helps me (fibromyalgia), dihydrocodeine or tramadol (have had amitriptyline and pregabalin in the past both gave me nasty side effects), lots of sleep, I have a nap most days sometimes two, yoga and stretching, regular visits to the chiropractor, vegan diet, lots of vitamins, magnesium, vit D, B12, folate, iron,

DarkedOn2219 · 15/05/2021 11:24

I've accepted it @NameChangeChronicPain and I get on with life, it's still hard to constantly be in the level of pain I'm at without a break because my body can't stand painkillers. Its scary knowing my children only have me to rely on when they all need so much extra support. The pain is mentally exhausting, but no one would know how much it was hurting by looking at me and I don't think anyone would believe I was in that much pain if they saw the very long list of things I get through every week.

sweetkitty · 15/05/2021 11:27

I forgot to hit post last night and as you can see I was up at 6am in pain again, this time it was my back and knees Sad it’s just constant and so draining.

NameChangeChronicPain · 15/05/2021 14:47

@DarkedOn2219

I've accepted it *@NameChangeChronicPain* and I get on with life, it's still hard to constantly be in the level of pain I'm at without a break because my body can't stand painkillers. Its scary knowing my children only have me to rely on when they all need so much extra support. The pain is mentally exhausting, but no one would know how much it was hurting by looking at me and I don't think anyone would believe I was in that much pain if they saw the very long list of things I get through every week.
I don’t know how you cope without painkillers. I suspect the answer is that you have no choice :(

Sending love, it’s so hard to be a parent when you’re in pain, can’t even imagine how it would be unmedicated. You sound like a strong person.

Gilead · 15/05/2021 22:46

I’ve increased my Tramadol and duloxetine today. I lost the morning thanks to the duloxetine increase, absolutely out of my tree! However it has reduced things to a dull ache, for now...

Namechange600 · 15/05/2021 22:59

I have severe endometriosis, adenomyosis pcos, probably Eds, pots, Mcas, chronic uti.
The endo and Adeno cause me the most pain maybe also Eds too but this is a new one on me so I tend to blame the endo.
I cope by pacing myself and having codeine when I need to on top of all the other meds including naproxen. Epsom salt baths, gentle exercise when possible, distraction, finding things I love at home. Surgery helped the endo too.
It’s tough some days though.

Ps there is a chronic pain board now! Look in general health. Xx

maskface212 · 15/05/2021 23:18

@peachcherries

Title says it all really! How do you cope whilst in pain? Right now my pain levels are really high. I have several autoimmune diseases and Fibromyalgia (which I fail to accept) which are mostly well managed but the last few months I've pain in most joints and muscles. Zapain isn't cutting it this morning and it's all getting me down.
I'm in constant pain OP. I feel as though I have third degree sunburn all over my body. Clothes hurt my skin. I have very dry eyes, nose and ears. I also get stabbing in my bones, as though someone is stabbing a long needle into my bones. There isn't a medication I can take to stop or reduce the pain as nothing helps. I also have chronic fatigue and debilitating social anxiety.

Things you can try:

  • Meditation and mindfulness can help manage the pain and depression
  • Gentle exercise such as swimming, walking, tai chi
  • Magnesium salts (Epsom salts)
  • Acupuncture
  • Vitamins - I take vit d, magnesium, calcium, multi vits, fish oil, starflower oil, B12
  • Get plenty of rest and manage your energy
  • Try and get as much sleep as you can I take melatonin and propanol to help me sleep
  • Manage your stress, it causes me to flare
  • Try therapy or CBT to help you cope
Arrierttyclock · 16/05/2021 10:00

I have endometriosis and severe IBS. Hot water bottles are my best friend

hyperpigmentationBgone · 18/05/2021 13:33

I've heard acupressure mats can be helpful - like this kind of thing: www.spikeology.co.uk/collections/frontpage/products/acupressure-mat-aqua

Painismydayjob · 22/05/2021 20:34

Pacing yourself, keeping active, relaxation and mindfulness really help.

Our understanding of chronic pain has changed massively over recent years. The pain that you feel is absolutely real. We know that our bodies produce pain as a way of keeping us safe. If you stick your hand in a fire, our body interprets that as painful to stop us from doing it again because it damages our body. It hurts whilst it’s healing too, in part to make us protect that area whilst it’s fragile. The weird thing about pain is that we have no pain sensors, it’s how our brain interprets signals that produce pain. In chronic pain conditions the sensitivity level of what produces a pain response is turned up, so things that shouldn’t be painful are.

There’s a famous medical case of a builder who stood on a nail and it came right through his foot and out of the top of his boot. Understandably he was in agony and was given heavy duty pain relief. In hospital however, they discovered that the nail had gone up between his toes and he wasn’t injured at all. Because his brain processed the nail being stood on and coming out of the top of his foot as meaning it had gone right through his foot it produced pain!

We also know that there seems to be a link between emotional trauma and chronic pain. Not entirely understood but we know the same part of our brain feels emotional and physical pain. They did whizzy brain scans and poked people with something sharp and saw which bits of their brain were active. They people they did this with had also recently had a nasty relationship breakup. When they asked them to think about the breakup the same bits of their brain lit up. We now think that chronic pain is caused by an over sensitive central nervous system. This means that there has been a change in the it, which means that potentially it can be unlearnt or retrained.

Medication is a small part of pain management. Opioids like morphine, codeine etc are great fir short term pain, but can actually increase pain along with lots of side effects which is why there is the current push to reduce their use. The body also becomes used to them and so needs larger doses to get the same level of pain relief .

I work in pain management and have chronic pain myself. I’m also currently reducing my morphine that I’ve been on for years. I’m now on less than half the dose I was (very slow reduction) and my pain is the same pretty much!

Never forget that your pain is absolutely real, pain management is about very gradual changes and you can live well despite pain.

There’s some really good resources on these websites.
www.flippinpain.co.uk/
my.livewellwithpain.co.uk/

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