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!

Hi @RickiTarr welcome aboard. How’s has your day gone?

Thanks for asking @Akire

I’ve had to work from the sofa today with one of those hospital style roll over tables, because of pain and spasm in my back. This is annoying me because I can’t reach handy things that I keep in my office. I need the rooms rearranged really.

I’m also grumpy that mobility aids and specialist furniture are so bloody ugly, so I just ordered some green baize to customise the table with.

The good news is I have a diazepam here for the muscle spasm which I can take as soon as I finish up this piece of work. Can’t take it before then because it combines with the tramadol and makes me spacey.

So medium day, I suppose.

I’ll come back and RTFT once I’m done.

Ah yes drug gymnastics we know it well.
It is so hard find decent equipment that works in the first place. Maybe I should start thread on rubbish mobility aids I've bought and sent to a charity shop!

Oh yes! “Perching stools” are a particular bugbear of mine.

Start that thread. I’m sure everyone would like a good equipment themed rant.

Oh yes ours just became a clothes horse before we got social care to take it back 😂

Well. Just had my first work coach appt since youngest is 3.5 - I needn’t have worried she is absolutely lovely. Pleased with the courses etc I’ve been doing for my longer term goals and is very understanding about my worry with the type of job, commute etc. So. I’m now officially Looking For Work. Scary! But at least she’s nice and doesn’t seem like she’ll push me into anything I’m not able to manage. 🤞

www.mumsnet.com/Talk/general_health/4201225-CHRONIC-PAIN-Mobility-aids-I-ve-not-loved-lost-lighthearted?watched=1

Ok I’ve started it lol

@SingToTheSky

Oh yes ours just became a clothes horse before we got social care to take it back 😂

Well. Just had my first work coach appt since youngest is 3.5 - I needn’t have worried she is absolutely lovely. Pleased with the courses etc I’ve been doing for my longer term goals and is very understanding about my worry with the type of job, commute etc. So. I’m now officially Looking For Work. Scary! But at least she’s nice and doesn’t seem like she’ll push me into anything I’m not able to manage. 🤞

That’s great news! I’m so pleased what a relief that she’s not putting pressure on.

Very high pain levels here today.

Legs are still in spasm mode after overdoing it yesterday evenin . I'm exhausted to the point I can hardly see in front of me.

My bodily jerks have kicked off again so both legs are jerking and spasm however it has decided to take my arm as well so it's been jerking all day which I could normally sort of cope with however it's my left arm it's jerking and swinging around, I should probably explain that's the same one I had to go to a&e about last night it's waiting on the swelling to go down so I can be review on Friday and hopefully get a cast on. So it's currently got two pillows strapped around it do try and take their impact.

A&e doctor recommended that increase the muscle relaxant to try and increase painkillers in the short term because the pain is bad as it's one thing on top of another.

Thankfully I got a call from the chemist at 5 and it has just been dropped off so I'm temporarily taking two pain pills a day and increased the muscle relaxant by 4mg which a note from the GP with the script me that I need to rest as the extra pills would probably knock me out but it is short term and the fracture clinic will let her know on Friday if I am still spasming and jerking as I am likely to hurt more during this. The increase in both is very short term, days probably.

Please excuse any typos as I am now dictating everything instead of typing.

Oh @NotanotherboxofFrogs that sounds
Horrendous. Body spasms are the pits. If I hold the wine and a straw can you drink it?

Morning all, checking on to say hi!

Pain and leg spasms are still having my life, managed to get out in the wheelchair yesterday though for a wheelchair around in the sunshine which cheered me up.

Had a bit of a stressful moment - my mum told me that my uncle was waiting 7 months for his neurology referral before he was diagnosed with MND. I've only been waiting 2 months for mine. Thinking I will use my work private health and go down that route. Unfortunately I'm on a fixed term contract though so I'll have to continue paying the insurance myself. Not the end of the world though.

Job hunting is going to be fun. I need something from May/June but it's going to need to be permanent home working which isn't always available in my profession.

@Akire I had my first vaccine (Pfizer) in Feb. I was a bit more tired than usual the next day and my arm was sore if I touched it but nothing more than that. Looking forward to my next one and feeing properly protected!

Hope everyone has as good a day as they can.

Morning @cricketmum84 been up since 530 in pain. Took meds and on MN since.
Do you think spasms are something more serious? That’s hard thing to wait for.

Feeling better after jab but glad didn’t have to do anything yesterday.

I'm pretty scared to be honest @Akire Cos nobody seems to know what's going on.

I have extreme nerve pain in my feet and legs, drop foot on both feet and no strength in my ankles, can't bear anything touching me as it sends pain shocks up my legs and then I get pain shocks travelling down my legs into my feet that make them spasm. Also got numb hands and fingers and my hands and forearms go into cramp like spasms where my thumb and fingers go into weird positions.

GP mentioned diabetic neuropathy but I've only been diagnosed as diabetic since Feb and it usually takes a long period of uncontrolled sugars for that to take effect.

Glad you are feeling better after your jab 😊

DD had her vaccination yesterday. Very kind nurse came to DD as her first patient ( but still waited until 10.30 which was helpful). She came in completely clean uniform with no perfume. I love her especially as she actually hasn't seen DD since 2018 so I'm so happy she remembered ( she is the back up nurse to our named nurse, both are community matron job share). She was kind gentle and efficient. DD felt a bit head achey after but at bedtime said she didn't feel right at all. At 3.20 am she woke me to get her calpol, hit packs, ice packs and to remove items of clothing for her. She had a temp, shivers, chills, very achey and unwell. I sat with her until 6 both with a cup of tea. Hoping she is now sleeping but don't want to wake her by checking! This hasn't happened with previous flu jabs . I can't think it would be anything except the vaccination. People with ME are reporting exaggerated side effects ( I mean from general population) which makes sense if your immune system is f*caked I guess.

Glad the nurse was lovely so hope she feels better soon. It’s been horrible feeling so weak since the jab but I’m still very glad I had it.

Feel really moody and unmotivated today, more headaches 😖 I have some stuff to get done on the phone/online. Just emailed to apply for my next distance learning course

I texted our nurse and she says these are common symptoms among the young people who have had the AstraZeneca vaccine. Probably last about 48 hrs but to keep her informed. Phew

Yes @Sooverthemill EXH had exactly same 36 hours of horrible flu with the OxfordAZ jab, despite being perfectly healthy.

I had Pfizer and although I’m the autoimmune disease, chronically ill, reaction and rash type, I just had a slight ache in my arm.

It’s becoming a bit of a pattern in everyone I know who has said which they had.

I hope your DD shakes it off quickly.

I had AZ fine till 12h later then bang shaking temp and sun burnt skin feeling. Didn’t feel sick because I guess that’s how I usually feel! By 24h felt much better just sore arm now day 3.

I get the feeling they are not fully warning everyone because they don’t want to put people off accepting the vaccine, TBH.

I was very glad to have mine. Actually very much a relief when shakes started that I knew would be short lived and would be over. I realised I never get the “when I’m better” feeling. Felt strange!

I'm reassured that it's 'normal' but I wish it wasn't yet another thing poor DD has to deal with. She's already in lots of pain

Is it easing at all yet?

Sorry about your daughter hope it’s back to normal pain soon

I didn't have any significant side effects, but DH was hot and shivery for a night.

I have noticed a pattern in my behaviour and worked out why! I lose impetus very fast, have ideas of things I want to do but don't follow through unless someone else is supportive. I think it's because I know my energy is limited and comes in waves, so unless someone joins in with me right now- if they raise an issue or cast doubts... I lose all motivation. I can't spare the energy to take into account their suggestions, which usually mean I need to do more thinking to make it work.

I used to be a self starter, very reliable etc. I miss my previous self, but current self needs to be more selfish- I can't be the driving force all the time, these days. So I need to stop beating myself up about it!

I hope the week is looking up for those of you who've been having a hard time. I'm doing well at the moment. I'm losing weight and getting more and more active. Went on a long walk this morning, and didn't get anxious about having the staying power to get back home again!

@RickiTarr

Is it easing at all yet?

No not at all. She's very poorly still. If she's still like this tomorrow I will call her nurse

Poor thing