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!

Today has been a better day, im up, showered, dressed, had breakfast, bin is back in, grocery delivery has been, pain is nagging in my back. I'm hoping that it will just stay at a nagging level and not flare up.

Friend is picking me up after 4pm as going to the nearest large town (we are bubbled) as her son has an appointment at 4.30pm and I need to go into vision express and get my glasses 👓 straightened out again as I lay on them yesterday and they are a bit skewiff and need straightened asap as I am the type who if misplaces glasses, needs glasses to find my glasses.

Thanks everyone.

Definitely not as bad, they used way more sedation so I was totally out of it and I woke up in recovery whereas other times I was far more awake even in theatre and I was wide awake much sooner.

I feel so conflicted. If I take all the meds I have access to i can at least get up and sometimes potter around the house. Without them I am in agony. Gp says to be patient and nerve problem will probably resolve in 8 to 12 weeks. Am I being an idiot for trusting this advice? Sometimes I think so amd I worry about what I am putting into my body.

Oh cansu it’s so hard to know isn’t it. DH is on a cocktail of meds and it’s horrible to have to take so much just to be able to vaguely function

Hope you’re recovering well today doadeer

Well done for managing some household stuff frogs I hope you aren’t suffering for it today. I hate the way I can have a vaguely productive day (while being aware it’s still far less than what most people manage) and the next day I’m worse off.

My cold has gone thank goodness. I feel ecstatically relieved it didn’t get into my chest this time - I think the steam inhalations helped (in normal times I’d go to the steam room regularly which has definitely helped my respiratory health). I’m still dizzy and weak though - I can’t tell if that’s just post viral now or if it’s still from the vaccine 3 weeks ago as I haven’t felt right since.

I have shitloads of forms etc to do today. I think my anxiety about them has abated a bit but my brain feels so foggy!

Glad it went well @doadeer. Happy healing.

I'm exhausted and grumpy, not a great combination. It's like a vicious circle. Desperate to lie down and sleep, but lying down makes the pain come after a few hours. So do I remain relatively pain free but walk around like a zombie, or risk having a nap and be in pain for hours?

Maybe I should take some paracetamol 🤔😉

You been paracetamol hasn’t cured it? I’m shocked I tell you!

It’s always a case of Frying pan or fire isn’t it. Sometimes we give ourselves an illusion of choice over the day.

Ah, good old paracetamol 🙄🤣

I am feeling so weak and wobbly still. Nothing seems to help that! However I have finally got on with some of the admin stuff so that’s something.

Eventful couple of days here....
Yesterday a pipe burst in our ensuite bathroom and water started pouring through the kitchen ceiling. Unfortunately - or fortunately depending on how you view it - I was standing right under it at the time! But at least we realised straight away and switched the water off promptly so minimising the damage. I hate to think what would have happened if we had been out when it happened. And it was a hot water pipe so at least I got drenched with pleasantly warm water, not freezung cold. Got to be thankful for small mercies.
On a brighter note we had our first Covid vaccines this morning. It was all extremely efficient I must say. No adverse effects so far so hoping it stays that way.

Today has been the payback for yesterday's good day. I've been out of the bed a couple of times (grocery delivery, Amazon delivery, bathroom trips) and sat on the sofa for a while and fell asleep with my head hanging down so big pain now. I've managed some stretches but my heated throw has been on high all day as I can't get warm. Fingers were numb at one point.

I've just been having a read through your posts, what a great thread! Sorry you are all struggling with pain

I have chronic pain in my feet and legs (among a long list of other things!). But I woke up feeling like my legs have been battered with a baseball bat! I'm on tramadol which I get on repeat but new prescription wont be ready until monday.

It's my own fault, I was on my feet too long yesterday so i had a feeling it was coming.

@Ispywithmycynicaleye, if it's on repeat, you can call 111 and ask them for some to tide you over until Monday. Hope you're pain free soon.

Hi Ispy sound a familiar Indeed. We say pain like it’s a twinge not like you say battered constantly with a bat.

Slightly better pain wise, done nothing the odd trip out bed but we shall take each day that’s not trying to do us in.

That is good news about the burst pipe what a nightmare though. If I smash a glass on floor that’s enough disaster take me days to sort!

@Akire the smashed glass on the floor, best top for collecting up the shards is a slice of bread as it gathers up the shards and can then safely bin it. I usually sit on the kitchen stool and poke the bread around as needed with the broom handle and usually 2/3 slices gets it all up. I lift any large pieces direct to the bin with my butchers glove as the glass doesn't go through it, I also am nifty with knives, Not, lol and the gloves protect me from myself as since I got them, no hand injuries from knives.

The pair was under a tenner and I've had them about 5 years, before them I was seen at least once a year for knife accidents, so might be useful idea for others.

Hello all, NC from PotatoSalad here.

Did not have a great few days but have managed to sleep it off. I think I forgot to take medication yesterday as had pain today, which triggered my ptsd.

Hoping for a good day tomorrow as I have admin and two projects I want to finish.

Thanks for tip Frog I shall give it a go.
Just realised how much alcohol I’ve had last two weeks. Oh dear. I know I use for pain relief/out of despair but somethings got to give. Two of major pain areas they don’t even know why it’s hurting so chance of actually having it fixed are less than 0.
CBD oil is something I really need to give a go had some good advice on other thread.

Welcome to thread potato salad don’t worry if you can’t keep up with names. We find quoting posts you want to rely to is easiest as no one here has amazing memory skills!

Evening all
So I was diagnosed with MCAS on Friday. Probably a systemic bladder infection too (thickening of the bladder wall).
So in all I have - pcos/severe endo /adeno/Eds/pots/Mcas/ thalassaemia trait

Does anyone else have this all going on?? Any advice?
I need to get my salt tablets for pots started, then going to start the Mcas tablets (antihistamine plus others).
On pain relief for endo and adeno for the last few years-codeine and naproxen.
Vitamin D deficient too
Generally anaemic due to trait
Need to sort my diet and drop gluten citrus and nightshade fruits to low histamine
This all feels a bit much to handle. I am so tired and in pain a lot.
Thanks for listening.

Hi Name change yes lots of us have many system conditions. Once you have one you seem to develop a collection.

Don’t try change meds when you are feeling over whelmed. Start by doing one at time and when you feel ok change another. I had some meds changed last time. Meds and dose and years ago I would have taken in stride no problem. But now it just totalled over whelmed me, was to much brain cope with all at once.

Can you explain MCAS briefly so we know vaguely what it is please.

@Namechange600 sorry to hear that. I think many people on here will have multiple conditions ( co-morbidities). DD does. I think she has MCAS too

@akire here

What is Mast Cell Activation Syndrome?
Mast cells, a type of blood cell, play an important role in the body’s immune system. They reside in all body tissues and form part of the body’s initial defence system. Mast cells react to foreign bodies and injury by releasing a variety of potent chemical mediators, such as histamine, when activated. In a healthy person these chemicals will act beneficially to protect and heal the body, but in a person with MCAS these same chemicals are inappropriately triggered and released and have a negative effect on the body. Amongst the triggers are a variety of different foods, exercise, chemicals, fragrances and stress. Many sufferers struggle to identify their triggers and continue to discover new triggers for many years after diagnosis.

So, DD had massive reaction to a new hospital bed and spent 2 nights in hospital. She reacts to bbq smoke. Different smelling deodorant . She may swell, get hives, vomit or have severe asthma attack.

Thank you xx I will go slowly with this all so I can get used to it.
It’s mast cell activation syndrome
My understanding is that it is the immune system in overdrive - makes too much histamine and then you have the reactions to some food, infections etc causing symptoms and that triggers the pots. Very new to this though!!

@Namechange600 yes it's a really tough condition. DD has severe ME, POTS, asthma, eczema, EDS and I think MCAS plus endometriosis

Morning the more I learn on here the more I think how short changed we all are by medical profession.

When you are “lucky” enough have illness that affects lots of body systems you may get a nurse that understands your disease for support. So diabetics, MS etc

yet when you have 4/5/6 illness where dealing with 1 is bad enough. You get no extra support at all. Up to you to juggle and manage conflicting advice, exercise and medication. No one is able point you right direction or understands multi level pain.

Morning all :) I should remind my mum to look up MCAS properly as it would explain a lot of the issues that she has.

It’s another one that can be co morbid with EDS etc isn’t it? (Sorry if I’ve missed stuff I’ve not read back yet)

Does anyone know about the EDS manifestation without a lot of hyper mobility? So called “stiff zebras” I’ve seen it called. Someone with EDS said it sounds likely for me although I do have some joints that are obviously HM. I’ve not got the energy to try and pursue any investigations but I’m just curious really

I sooo know what you mean there akire DH is finding similar too. Everyone fobs him off to someone else.

@Sooverthemill so sorry for your daughter. Glad she has you fighting her corner

I have had two surgeries for endo. My second full excision surgery helped a lot but still really unwell with pain and exhaustion etc

I was also diagnosed with asthma age 9 but pots specialist thinks probably it is disordered breathing which I have as part of pots/autonomic dysfunction

Just feel like there is so much to sort out!