Chronic pain anyone? Please read this πŸ’š - British Heart Fou...

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Chronic pain anyone? Please read this πŸ’š

woodlandwonders profile image
β€’29 Replies

Its been a while since I was here but I really wanted to share this with you because I know alot of you live with it too.

I have lived with a lot of pain, in many areas, for many differing reasons. At the beginning of this year it was all getting a little out of hand. I had been to see a physio for hip impingement but the exercises they gave me caused pain elsewhere. My body was uber sensitive to anything. Migranes, chest pain, back pain, knee pain, my funny extra joint pain etc were all increasing. I couldnt bare to be touched. It was awful.

So I found an osteopath. Now this isn't the life changing part, because I have been to see plenty before, the life changing bit, after A LOT of resistance on my part, was the introduction to pain science. This is mostly being driven by pain scientist, Lorimer Moseley. All over YouTube. Website tamethebeast.org

I've recently completed an online course called Permission to move, with the support of Carol, my Osteopath. Luckily with her support, because the whole way through I was like "this isn't me im not protective of my pain, I keep moving". And that part is still true. But to be honest in parts this journey has turned me into an emotional wreck and thats when I've been very glad of having her there!

And thats really what has changed for me. I now understand the emotional journeys we all go on with our pain. How it leeches into everything, how emotinal baggage, from way, way in the past, plays such a huge part in how your brain reacts to things now, including perceived dangers and therfore how it generates pain. It has been both mind-blowing and life-changing in many ways for me.

This is all new stuff but I would urge anyone with chronic pain to find their Carol. If you live in North Wiltshire I might share πŸ˜‚

Not sure if allowed but this is her website carolplumridgeosteopathy.co.uk -She does great blogs if you have some time

#pain is complex

#All pain is real

#osteopathy works

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woodlandwonders
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29 Replies
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MONIREN profile image
MONIREN

Yes, chronic pain for 40yrs, I was fit, size 8, just had my 3rd child, and my back went completely. 1st pain management course 20yrs later, showed me how to live with it, 2nd course 10yrs ago showed me I can control it. I have bone degenerative disease, but barely take pain medication. Recently neurosurgeon wanted to operate, I was there for other reason. So I do believe in what you say, but as you at first said, it's hard to accept. I very rarely share with others as they get offended, their pain is real. So I'm happy you are on a new journey. Take care. Moni

woodlandwonders profile image
woodlandwonders in reply to MONIREN

Hello Moni, I am finding its a bit of a conversation bomb. But so is being a vegan so I'm used to it πŸ˜‚ If you only spark something in one person .....Thank you for your kind supportive words they mean a great deal

MONIREN profile image
MONIREN in reply to woodlandwonders

The brain is fascinating, like how they use mirrors to help those with one limb missing. I have a brain disorder that makes life difficult, as well as my heart problems. Yes, it is a conversation bomb. But it's hard when you see so many in pain to keep quiet. Take care. Moni

woodlandwonders profile image
woodlandwonders in reply to MONIREN

That was my lightbulb moment and what finally switched it for me. I was quite happy to accept that amputees have "phantom" pain that was very real and very painful but not so willing to accept my brain could do that to me!

I have Ehler-danlos syndrome, a connective tissue issue, dodgy valves, poss MVA and chronic q feaver which has all sorts of fun everywhere! I really thought I would be swollowed up with pain forever and used to wish for life to just hurry up and now im like hang on! Its gonna be tooooo short!

Lovely to meet you, take care x

MONIREN profile image
MONIREN in reply to woodlandwonders

Another was a YouTube 'Arthur's amazing transformation. ' He had real problems, but turned his life around, one small change at a time.

woodlandwonders profile image
woodlandwonders in reply to MONIREN

I will look for that, thank you. You are right, one small, step at a time x

Ive just seen you are Australian, which makes sense of why you are so much more up on this πŸ™‚

MONIREN profile image
MONIREN

I couldn't believe the difference between the two chronic pain courses, I suppose time made them understand better. Who knows maybe in time they will understand more about other chronic illnesses. Take care. Moni

Milkfairy profile image
MilkfairyHeart Star

Hello,

Thanks for the information.

I live with chronic pain due to coronary vasospasms which morphs into acute pain episodes.

When that happens I end up in hospital on IV GTN and morphine.

I also live with migraines.

I attended a Pain management programme which taught many different techniques to cope.

I learned to respond emotionally in a different way to my pain.

I also found the Curable app helpful to reinforce my sessions with a pain psychologist.

curablehealth.com/

I had an ah ha moment reading Vidymala Burch's book.

'Living well with pain and illness'

Pain is the ultimate uninvited guest to your life's party. Over staying their welcome and not knowing it's time to leave.

You have to learn to accommodate your pain with grace and acceptance.

Nettekin profile image
Nettekin in reply to Milkfairy

Like that choice of words Milkfairy. We could all do with practising a little more grace and acceptance. Hope you are keeping well ish at the moment x

woodlandwonders profile image
woodlandwonders in reply to Milkfairy

I agree with Nettekin, Milkfairy, your words are always well considered and enlightening. I know it will be an ongoing story for me, that the pain from dislocations, migraines etc are always going to be with me. But now I have a tool to help me turn it down so it doesn't consume. Im am more than illness and pain for the first time in 44years and it feels great :)

Thank you for the link to curable health and the book which I have just ordered. Im sure both will help me greatly in this journey. Hopefully it will give me a tiny bit of the grace you have.

Take care

Milkfairy profile image
MilkfairyHeart Star in reply to woodlandwonders

Thank you for your kind words.

It is definitely work in progress for me on my journey too. At times the calm escapes me.

Turning down the volume on our pain is a good way to describe what we are trying to achieve. Making it a more bearable background hum.

I am glad you found something to help you.

You take care too.

Nettekin profile image
Nettekin

Hi woodlandwonders. Big fan of Moseley as well. Have had a lot of positive information and help from his Explain Pain book, don't know if you have seen it? I was supported at the time by a very forward thinking chiropractor who also helped with cognitive functional therapy. It made a big difference to my mind set about degenerative disc disease. I also found reading up on Neuro science and Neuro psychology a diversion from focussing on pain all the time. It could be a conversation bomb, but only if you become too evangelical. So pleased you have found a way forward x

woodlandwonders profile image
woodlandwonders in reply to Nettekin

Hello Nettekin, I do have his book and used it alongside tame the beast. Seems we were both lucky to meet people who think outside the box. And lucky that we are open to trying it too! I've not studied since i lost my job so further reading has been a great distraction. Im an environmental forester, not scientist, so it takes a while to filter down but when it does BANG! I can be heard quite ofen asking my brain, is my leg pointing in the wrong direction? No? Well, i dont need protecting then thanks!

I will try and be less evangelical πŸ™‚

Thank you for the support x

Nettekin profile image
Nettekin in reply to woodlandwonders

Sorry, didn't mean to suggest you were evangelical. Just recognising that I was quite capable of climbing into the pulpit as well and it isn't always well received. 😘 x

woodlandwonders profile image
woodlandwonders in reply to Nettekin

Dont worry! I know you weren't. But its good to have a reminder not to 😘 x

Peileen profile image
Peileen

A very interesting posting. I have stenosis of spine and fortunate enough to have been on pain courses. Neuroscience is fascinating. Pain receptors build up in the braithe more pain a person experiences. The brain seeks to keep us from harm. Pushing through pain can result in the brain going on β€œred alert” and causing more pain. Pacing is how at 74 I can paint fences and walls. Working for short blocks of time and never ever pushing through pain means I can still achieve. Changing activities if one stars to be painful can get you through the jobs in the house and garden. Also my pain is often from the nerves trapped by arthritis i my spine. The pain specialist explained that repetitive movements expand the nerves so increase the pain from trapped nerves. I do often have to explain this to physiotherapists so I perform the beneficial exercises with reduced repetitions. I never ever use pain meds to enable me to do more activities. Sensible pacing enables more achievement. I find neuroscience fascinating. It explains so much. Thanks for this post and links. A good osteopath is like gold. I moved away from my wonderful one but I do find a TENS works on my low back as well as walking and unbelievably loose dancing to reggae music.

Milkfairy profile image
MilkfairyHeart Star in reply to Peileen

Pacing is so important!Trying to avoid the boom bust cycle is difficult especially when you feel well and are tempted to make hay while the sun shines.

I use a TENS machine along with hot water bottles too.

Laughter and smiling helps. So thank you for the image of loose dancing to reggae music which made me smile 😊

woodlandwonders profile image
woodlandwonders in reply to Peileen

Hello Peileen, Thanks for taking the time to reply with such fascinating information. And, to be honest, a wonderful dose of inspiration :) The penny dropped, during the latest round of physio that i react badly to repetitive actions too. But when i tried to explain this they just encourage me to persevere, like I wasn't trying enough? And I got myself into a proper pickle. Part of this journey has been learning what works for me, so i will be tailoring my exercise to suit me in the future too. It must be a 'thing' because I get going in the morning by practising the moon walk to watever song is playing! Im still really bad at the moonwalk but i find it hilarious and laughter is the best medicine

Qualipop profile image
Qualipop

40 years of fibromyalgia followed by scoliosis, stenosis, degenerative disc disease, peripheral neuropathy and various other problems. When I was first told that exercise really improved fibromyalgia I was very sceptical b u I persisted and it worked. I didn't need painkillers for a good 20 years until I developed Maigne syndrome which flattened me. I was bedbound for 9 months, couldn't get any help. Pain clinic wait was 12 months. I then discovered Bowen therapy, a completely non invasive, gentle treatment working on similar principles to acupuncture without needles. It got me back on my feet and I could sleep more than 3hours. However it took 10 years to get a diagnosis so I now have permanent nerve damage. The brain most certainly does have a huge effect on how we deal with pain. I found distraction techniques w orked for me. I painted. Sadly my wonderful pain consultant retired and Bowen therapist left he area and I am now left with steadily increasing pain, slowly increasing doses of opiates and more bouts of not coping well. LOcal pain clinic is utter rubbish. Turning 70 and having a heart attack, was, for me a huge trigger and I'm now not coping at all well. I really need that consultant's input. There was an excellent short piece on TV last night about alternative methods of coping with pain in addition to but not excluding painkillers. It said basically what's been said here and it does work. If only I could find one to one help locally to give me that boost again. Watching videos or reading books just doesn't work for me.

woodlandwonders profile image
woodlandwonders in reply to Qualipop

Hello Qualipop, I read your post earlier (thank you for taking the time) and I had to go away and have a little cry. Then i had a word with myself and read it again. Your story is hearbreaking but there are massive chunks of glowing light and hope in your words.

It made me think about the effect of having the support of my osteopath has had on me. How i felt so alone and lost before. So i fully understand how you sometimes need the support of others so you can face the journey.

'Sometimes our light goes out, but is blown again into instant flame by an encounter with another human being' Albert Schweitzer

They will come. Keep hold of you till then x

Ps do you remember the programmes name or the channel?

Qualipop profile image
Qualipop in reply to woodlandwonders

It was a piece on the Northern News. Granada I assume. Thanks for your words. When I "just" had fibromyalgia my consultant asked me to give a talk to a group of his patients about keeping active because I was so positive about it. Sure, it hurt but you feel so much better afterwards. As Moniren says below if you can find a good Bowen therapist hey are worth their weight in g old. Mine actually taught Bowen but far too many people do a couple of hours' course without any prior knowledge of anatomy or even pain and are either useless or make things worse. We have one like that here; big sign on the pavement- wouldn't go near him. I tried another lady who just didn't realise what a powerful treatment i is, overdid it and made me much worse. I wish I could find someone as good as he first one. It's when something new goes wrong or yet another disc dries out that it really gets me down and I feel as if I'm just starting all over again and simply can't get back to where I was without help. Too many pain clinics just want to throw gabapentin and amitriptyline at you. They have no alternatives. I swear I will scream at the next one who has nothing else to offer. Yes I've tried them many many times. They do NOT work. Gabapentin made me seriously suicidal and I'm like a zombie even on half dose amitrip. Hitting 7 was the worst. My mum died of a series of heart attacks at 67; dad got cancer and went at only 73 so I really felt I didn't have much longer then bang- heart attack. Suddenly with he pain so bad, changing lifestyle to recover from the heart attack seemed completely pointless. That little voice saying "Why bother if this is what life's going to be like?". That's when I need the support but having tried CBT I ended up teaching the girl who did it all about chronic pain. She hadn't a clue. Sometimes you just go round in circles.

woodlandwonders profile image
woodlandwonders in reply to Qualipop

I hear you, lovely. I've been put on some awful drugs too because they had no idea what to do for me. One was for treating epilepsy!! Im sorry I cant be of more help on your journey but I can listen anytime xx

Qualipop profile image
Qualipop in reply to woodlandwonders

The epilepsy drug would be gabapentin or pregabalin ( Lyrica). Horrible things.

Milkfairy profile image
MilkfairyHeart Star in reply to Qualipop

I agree Qualipop

woodlandwonders profile image
woodlandwonders in reply to Qualipop

Thats it Qualipop, pregabalin

Qualipop profile image
Qualipop in reply to woodlandwonders

It figures. There are just two, gabapentin then its newer co usin pregabalin ( Lyrica). They have become the ONLY Things offered for chronic pain.

woodlandwonders profile image
woodlandwonders in reply to Qualipop

Qualipop - MONIRON replied to you below x

woodlandwonders profile image
woodlandwonders in reply to woodlandwonders

Its just so wrong this was at least 10 years ago πŸ€·β€β™€οΈ The withdrawal was awful.

MONIREN profile image
MONIREN

I managed to find a great Bowen guy, then we moved, sad that some think they can do Bowen, tried acupuncture, but it's expensive, there too, you need someone good. Distraction is what I use and like others, pacing myself. Take care. Moni

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