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!

Friday again! How’s everyone’s week been? Been up and down quite lot of pain and listening to friends and family planning their Summer and adventures is rather depressing. Not that I don’t wish them well of course but hard when circumstances mean you can’t do things others take for granted.

Hi Akire sorry to hear that you've been up and down quite a lot of pain. A mixed week here. I'm actually not having such a bad pain day today (few and far between but I'll take them when I can) I've also just had referral come through for my daughter. I only asked GP last week, so pleasantly surprised. She is being investigated for EDS. Think we've been quite lucky here in the north east of England. Both her and my own referrals came through within a week and only having a wait another 2 weeks for the actual appointment. Hoping for a peaceful weekend and also that it's not too hot!

A bit stressed here to be honest, but for sort of a good reason, I have been called up much earlier than expected for my foot surgery and will be having it on 23rd June. I will be on crutches for up to 6 weeks so hoping I will manage OK. My pain seems a little better this week.

DH is still working from home so it should be all right. I am doing Slim Fast to try and get some weight off quickly before I go in as I thought I would have longer to lose the lockdown weight 😳

That is good news! Do you have to lose weight pre-op or just make it easier? Good hear that NHS is getting on with things now.

@Akire nobody has said to lose weight, but I thought it would be a good idea to get even half a stone or so off as I will be on crutches and no weight on the left foot for some weeks. I had started trying to lose a little but feel it makes it a bit more urgent!

Hello 👋

@Akire how are you doing?

@Evenstar how are you feeling about your operation?

My back pain is sneaking back... It's coming on slowly... Different to when the steroid injections wore off and it was very sudden. My last procedure was nerve denervation (burning the nerves) and I know they will fuse back but it was expected to take many months. Just my luck I normally heal at a snails pace but these nerves have come back at lightening speed.

I've started swimming on top of my pilates and strength training... Trying to give myself the best chance but crikey it was hard work!

@RainbowZebraWarrior
That's great news! Oh I'm from the north east ❤️

@Akire

How’s everyone coping in the heat although I’m sure somewhere it’s raining. My feet have been killing me im wheelchair user so they do swell if sit long periods but now the balls of my feet started swelling when out less than hour. Really hurts and feels right not sure anything I can do about it. So annoying :( I expect them to swell if doing something exciting and all day but not quick trip down the road and back. Sometimes feels body wants to stop be doing anything.

Would a cooling foot bath be nice for you? Could just add some Epsom salts to a bucket, I'm sure works aswell as fancy machines!

@doadeer I do feel a little apprehensive, as one of the side effects can be Complex Regional Pain Syndrome, and with a potential fibromyalgia diagnosis I know that abnormal pain reactions might be an issue for me.

My foot hurts every day already though so I think it is worth doing and hoping for the best! I am busy sorting out bits and pieces to try and make recuperating a little easier so hopefully I will be OK and much better to have DH at home.

Thanks @doadeer it more to stop them swelling in the first place. I’m relatively young to want wear support stocking toe to hip for the next 40years!

Oh @Evenstar just what you need 🙄 how long is expected recovery? You'll have to get lots of healthy tasks snacks ready and some good boxsets!

Tasty *

😢 @Akire you definitely are. Does self massage help?

[quote Evenstar]@doadeer I do feel a little apprehensive, as one of the side effects can be Complex Regional Pain Syndrome, and with a potential fibromyalgia diagnosis I know that abnormal pain reactions might be an issue for me.

My foot hurts every day already though so I think it is worth doing and hoping for the best! I am busy sorting out bits and pieces to try and make recuperating a little easier so hopefully I will be OK and much better to have DH at home.[/quote]
I think many of us have abnormal pain responses. I’m fed up
Of going to Gp after months of pain. Doing tests then shows nothing. All well to say my bodies warning system is up the creek without a paddle but it’s frustrating when things hurt for no good reason. And I’m supposed to know when I’m “really” ill or injured. You do loss faith in yourself.

Sorry name change fail!

I agree with what you wrote completely. I don't want to sound all pseudo science but I think when the body is in "fight mode" all the time, you lose perspective on normal sensation. I was so exhausted for ages even when my pain lifted and I would still freeze or feel a lot of resistance if I did a position my back hadn't liked before even when there wasn't pain anymore... It felt like I need to train my body to say "no its okay"
It's all very complex and not enough research into the impact of long term pain both physically and psychologically

I have ordered a pile of books to read, and trying to organise stuff to minimise moving around afterwards, as keeping the foot up for a couple of weeks for as much as possible is recommended.

I have a waterproof dressing cover and a long rubber mat so I don’t fall over in the shower, a step to get in (left over from when DH had surgery some years ago) so at least I will be clean! I have a packet of body wipes and dry shampoo if I don’t feel up to that for a while.

Dog walker is on standby for days when DH isn’t available.

Sorry the pain is not so good for some of us 💐 for you all

Will you have someone at home to help? I recommend a little trolley or system where you can get and carry a cup of tea or get a flask and bag so you can carry it from room to room.

@Akire yes my husband will be around, and I have got a long handled cotton tote bag to hang round my neck which won’t be any good for hot drinks but will be handy for other stuff and a drink bottle

This pain is becoming increasingly unbearable. No idea where I go from here.

Hi @PaperMonster sorry you having an awful day.

@Akire thank you.

@PaperMonster oh I'm so so sorry to read this, feel terrible for you 💔
What's your home support like?

Thank you @doadeer lots of support at home thanks. It’s just what do I do when the pain relief isn’t doing its job and the ointment only gives minimal relief. And then I wake up this morning and it’s just there again (I’m good at sleeping thankfully!!) and my heart sinks. Off for a walk shortly to make sure my hip doesn’t give up - but it’s my shoulder giving me the most trouble right now and because of the delays it’s just getting worse - the rest of my arm is feeling weak.

I find on warm sunny days the world feels optimistic and I’m unreasonable annoyed that my body didn’t get the message and let me have a decent day!