CHRONIC PAIN - share your moans and achievements

[doadeer]

Hello,

This thread is to share the day to day... The moans, rants, fears, anger of day to day living with pain... And let's be positive where we can too... Little or big achievements.

I've had a tough day with my grumpy toddler who is obsessed with biting, he made my shoulder bleed today 😢

On the plus side, had a great pilates class and managed some tricky stuff despite feeling exhausted... I couldn't have done it unless my teacher was on Zoom telling me to hold it!

I had brain inflammation that left me disabled. Now ME for over 20y suspect fibro. Migraines, suspect endo also as horrific pain and problems. So between fatigue and pain and lack of movement there is always something being naughty or flaring up. Tried various long term pain killers and anti dep nothing worked that beat all nasty side effects. Just take codeine on days when had enough. Though not sure how long let me take for before someone decided I can’t have it.

Not sure if should push for fibro diagnoses but don’t think can do anything of I do. And if you have other conditions it just gets blamed on that or pushed from pillar to post with different departments.

I don’t work as unfit at least for now with DWP so spared having to do anything than basics. Which I struggle with.

I shared this lately on social media, it is so difficult when you temporarily have a little bit of relief but knowing that it won't last. People have no idea about the psychological impact of that

@Akire
I know I'm always banging on about yoga mindfulness or whatever, it's just because my family have a business that does this so I'm obviously a huge believer in its benefits, my sister does beautiful mindfulness class on a Sunday evening called peaceful minds and you just lie in bed you don't need to move or do anything there is no pressure she does things like visualisations or yoga Nidra which is a relaxation practice, your camera is off and you don't need to be exposed in anyway. Do you think something like this might be nice for you? Obviously does not need to be my sisters class, many more are available on the Internet 🤣

@doadeer

I shared this lately on social media, it is so difficult when you temporarily have a little bit of relief but knowing that it won't last. People have no idea about the psychological impact of that

That’s lovely. I want something up, must make it April’s goal.

[quote doadeer]@Akire
I know I'm always banging on about yoga mindfulness or whatever, it's just because my family have a business that does this so I'm obviously a huge believer in its benefits, my sister does beautiful mindfulness class on a Sunday evening called peaceful minds and you just lie in bed you don't need to move or do anything there is no pressure she does things like visualisations or yoga Nidra which is a relaxation practice, your camera is off and you don't need to be exposed in anyway. Do you think something like this might be nice for you? Obviously does not need to be my sisters class, many more are available on the Internet 🤣[/quote]
How does relaxation help pain? Or is it just subconscious way you hold yourself?

I wouldn’t be against chair yoga or something. Just have be careful not over do moving with fatigue

For me, when I've been in real constant, sweat inducing type pain (which has been a lot!) I find lying in bed doing the mindfulness class after about 10 mins I drift into a nice dreamy half asleep half awake state and I'm not thinking about the pain. Even if it's just a short relief.

Chair yoga is great just to stretch and mobilise a little but in a safe way

@akire if you are in pain you tense up your whole body. Which makes everything worse. If you can relax, it helps.

Mixed day for me. I had a terrible night's sleep last night but fortunately I could have a lie in this morning as DH volunteered to take the DCs to their activities. Then this afternoon I went for a lovely bike ride with some friends. We haven't been able to ride together for ages so it was really nice to see everyone and the weather is beautiful. But I fell off. 😥 Not badly - it was just as we stopped at a junction and I put my bad foot down and it gave way so I ended up on the floor. No major damage, just some skin off my knee but it will probably wind the rest of my pain up.
How's everyone else today ?

Glad you got out on your bike. I’m not to bad today but very slow laying in bed day so no great claims to anything. Just all news about Duke of Edinburgh quite sad. Glad they are giving over main TV channels what a century and change to be born into.

Oh I'm sorry you fell off your bike! It can be so sore to skin your knee.

I've got my jab tomorrow morning. I've had a tough week with back pain, a migraine then a horrid migraine haze like a hangover 🙄 so feeling a bit worried about how I'll feel.

Is this second covid jab? You are having rough time. Sorry x

No my first, I'm not a priority group but the GP was sympathetic to my argument I'm an unpaid carer for my son who has severe autism. So thankfully we can get booked in

Hope you have support in case you are sick. I was rough 12-30h after then fine.

Yes I booked it for a weekend so my partner can be with Alfie.

Oh my back is throbbing... Constant pulses in my back 🙄 I had the nerves burned why is it still hurting?!

That’s good. I hope you have a sore arm and that’s it! But if you do is amazing to know it’s not going last long. Best time of being sick for years! Since we never get luxury of having a stuff come and go in a day was honestly a revelation. Oh yes this is how my body used to be

Hope everyone is doing ok this morning?

I've finally got my neurology referral through! Seeing a consultant this afternoon so hopefully we can start to find out what on Earth is happening to my legs and feet.

I've had a couple of bad nights where the shock type pains in my feet have been unbearable, had to up cocodamol but I need to remember to ask the consultant to prescribe something specific for nerve pain. Hopefully that will work better.

Also had my metformin increased for diabetes which is having a hellish effect on my tummy. My poor legs are exhausted from the constant loo trips!

Managed to shower quite easily last night with the adjusted shower stool so it was lovely to wake up feeling fresh and clean and with clean hair!

Hi all. Not posted for a while, nothing interesting happening here. Just blah. On new meds for anxiety so think side effects aren’t helping, I’m really grateful DH is home FT as I’ve been able to just rest (have been binge (re)watching line of duty all weekend!). Had DH wait outside the bathroom while I finally showered yesterday (and then got into clean pyjamas and back into bed).

Gym/pool reopened today. Hard to believe last summer/autumn when it was open I was managing to go regularly, and walk there too. Can’t imagine it today or in the next month TBH. Once yoga restarts I might give that a go.

@SingToTheSky it's depressing to think back to things you could do "before".

Last summer and autumn I was doing a weekly outdoor yoga class that I absolutely loved. Now I can't even walk without assistance and can't go outdoors without a wheelchair.

Glad to hear you managed the shower too. It's bloody hard but it feels so worth it when you are snuggled up all clean and smelling nice again!

It really is isn’t it 💐 I am well used to my health being variable and unpredictable (ME was diagnosed 2012) but I haven’t had a relapse this bad for quite a while.

Problem is I can’t really tell what’s relapse (or caused by the new meds, or the jab which weakened me for a while) and what is me becoming less fit. It took very little for me to become a hermit recently and it’s hard to know if I’m helping myself by resting more, or making it worse by not keeping a little mobility and getting fresh air etc.

It’s complicated by my autism/adhd too - I get overloaded so easily out in the real world (made worse by lockdowns definitely, so much change, masks, not going out as much etc) and that affects me physically too. So I don’t know if retreating from it (thus resting mentally too) is a good thing or if it’s just lowering my tolerance even more.

I filled in an econsult for my GP last Tuesday saying I’m in unmanageable pain. Got a text Thursday saying it’s being triaged and someone will contact me and not to contact the practice. Still heard nothing. In so much pain that it’s very unusual for me. Definitely going to run out of painkillers which won’t be due until a week tomorrow. Will have to call tomorrow if I don’t hear today. They really don’t give any kind of a crap.

@SinkGirl

I filled in an econsult for my GP last Tuesday saying I’m in unmanageable pain. Got a text Thursday saying it’s being triaged and someone will contact me and not to contact the practice. Still heard nothing. In so much pain that it’s very unusual for me. Definitely going to run out of painkillers which won’t be due until a week tomorrow. Will have to call tomorrow if I don’t hear today. They really don’t give any kind of a crap.

That’s awful. But I’m not surprised, long term conditions are not seen as real enough. If you rang saying had ear ache all night emergency appointment. Been in same pain for 6months? Or well long condition = not an emergency

@cricketmum84

Hope everyone is doing ok this morning?

I've finally got my neurology referral through! Seeing a consultant this afternoon so hopefully we can start to find out what on Earth is happening to my legs and feet.

I've had a couple of bad nights where the shock type pains in my feet have been unbearable, had to up cocodamol but I need to remember to ask the consultant to prescribe something specific for nerve pain. Hopefully that will work better.

Also had my metformin increased for diabetes which is having a hellish effect on my tummy. My poor legs are exhausted from the constant loo trips!

Managed to shower quite easily last night with the adjusted shower stool so it was lovely to wake up feeling fresh and clean and with clean hair!

That’s good news. Fingers crossed can help.

I’ve been feeling more rested but not been out few weeks as half term and few places can go will be packed. Even though I try get out half hour day for walk you don’t realise how much it takes it out of me.

Really is toss up between mental and physical health. Always the juggle.

Back from the neurologist. They think the nerve damage is caused by malnutrition. Rubbish vegan diet and near ED for the last year until my diabetes diagnosis kicked me into eating healthier.

Feeling stressed that I have caused this.

More blood tests, physio referral and nerve conduction tests coming up.

Hello, not sure I’ve posted on this thread before. I’m in so much pain with my shoulder/arm today that I can’t even think straight. I feel like attacking it with a hammer and doing enough damage to actually be seen by someone soon. Which is bloody bonkers.