Chronic Pain- Daily chat drop in thread #2 All welcome

[Akire]

Hi all well we filled up the last one and now we have our newish chronic pain boards.

This thread is for anyone who has days , weeks, months at time when get chronic pain flair or lives in pain constantly. There are so many conditions that have pain and often limited understand of how it feels to be living through it. All welcome jump in and feel supported

Had sad moment today listening to people on radio talk about pensions and retire. But when you have chronic illness that is your job you never get day off pain, feeling awful and all physical and emotional admin that life is. I’m never going bloody retire from this never have relaxing day out or holiday just drudge drudge and pain. I know it’s obvious but really depressing land in your lap.

@Akire that is a good idea to do half of something. I washed our duvet yesterday, I have bought a coverless one so it saves struggling with the cover. DH will help me change the fitted sheet tomorrow when he isn’t working. It still gets done in the end.

I got my hair cut today for the first time since December, I couldn’t face going to the salon and wearing a mask, but it turned out a Facebook friend does mobile hairdressing. My hair is so thick and heavy and I have had about 6 inches off bringing it back to shoulder length so a lot easier to wash and brush again.

Tried phoning the doctor, but gave up after being on hold for ten minutes, I need 2 appointments and some test results so I am going down there in the morning. We can go in again now so that’s something.

Hope all have a good night

Well done on hair cut I’ve had 3 DIY haircuts and not round yet to going plus saving loads so win win. Yes good luck everyone tonight.

How many peices are we all in today? Had suprise migraine 1am! That never happens usually it’s the 3-4am wake up. Managed TENS on head but the sudden waves nausea was frightening. Lucky wasn’t sick as soon as I do the pressure in my head builds up I’m almost passing out pain. No idea why the trigger but suspect with Peri they start messing round more

Surprisingly in one piece this morning! Slept well again, it's just the morning grogginess that gets me down. I could cope with it if the amitryptaline actually lessened the pain but it doesn't seem to be.

Doing my physio exercises and I can almost keep my left ankle and foot straight when I do the leg lifts on my side! Right foot still drops down like a pathetic old banana skin though and as much as I will it to move it just ignores me. So annoying!

Poor J is ill this week. Hacking cough and feeling sick. She has done 2 LFT's and both negative thankfully. I live in fear of covid getting in this house.

1am migraine does not sound fun 😞 hope you are feeling a bit better now. Well done in the bathroom cleaning though!!

I'm exhausted. This flu is killing me off

Hugs @HerRoyalRisesAgain how many days now 6? Hang on in there x

Hello long time no speak. Feeling pretty low today. I'm trying not to cry.

So I had the lidocaine and ketamine infusion to coat my pain receptors and get them to chill out (they are basically constantly firing and telling me im in pain constantly)

It's 3 weeks later and really a minimal improvement. Ive got nowhere to go from here.

I just can't face that this is my life my body. Yesterday I did a long walk (for me) and a PT session and now I'm in bits today.

Back on the coedine today.

How do you manage acceptance? I'm struggling

Hugs @doadeer sorry it didn’t help. I don’t think I accept it very much. Everyday I am disappointment and yes surprised that I’m not having a decent day. I mean come on universe I deserve one! Then I get cross and tell myself one more day, tomorrow will be better. Then spent half day feeling cross that it’s not. Maybe that’s just the best way to live in Hope then get cross but hope for better tomorrow. I can just about do one more day. I get to lunch time then 4pm then have silly TV till news and soaps then bed. I never feel like get through more than next 4h time slot.

It’s not like we can’t find joy in small things or learn feel grateful for things we can do but it’s bloody hard feeling shit on constant basis. Just because we had 10,000 hours of our knee caps being drilled dosnt mean next hour is going hurt less. In fact as many of us know body seems more on high alert starts telling you pain is there even when it’s not.

I’ve found these threads so helpful there isn’t anyone in real life knows what’s it like or beyond “are you having tough day”. Saying how it is each day at least allows me acknowledge this isn’t normal and I’m not failing because I’m finding it hard. Which is what we end up doing.

I posted yesterday about realising I’m never going retire from my day job. Feeling shit IS my day job I feel like climb mountain with 10 stone back pack on everyday over broke glass in bare feet. People can say you manage well but it’s either get up and go through it everyday or you end it all. Which is a one time rather drastic option. There is no realistic plan B. One minute, one hour, one day at time xxx

It's awful being in so much pain all the time with no relief. It really is, and those that don't experience it can't possibly understand

My head is better now but feel really weak day and also starving. So had take away burger and chips as need major carb and to shattered to even do something from freezer.

Takeaways are your friend when your too exhausted to cook. I’m still able to work in a job I love just now but most nights when I come home I have to have a nap. The poor DC I have hardly seen them this week I’ve been too tired to actually eat with them at dinnertime. I woke up later on and DS who is 11 had put a blanket over me and 2 cats were curled up next to me I often feel all my DC are going to remember is a Mum who was always in bed

TMJ pain still horrific put another prescription in for dihydrocodeine today too for my 14 day supply

I’m sitting here feeling like want a cry or throw few dozen plates around. Had 2 nice drinks tonight should have knocked some pain on head but no. So uncomfortable can’t relax it’s like constantly having a full bladder you can’t relax or not think about it so annoying. least some time at sleep is oblivion.

Akire - I feel the same, I fancied a glass of wine tonight but thought it’s not worth it I will pay for it tomorrow alcohol makes me so ill now it’s not worth the bother, another thing taken away. Hope sleep finds you soon

And you good luck x

Hello all, and sorry that you too are living with chronic pain in all its forms, for various reasons.

I've been living with it for longer than I can remember now. My lower back especially, but also in my joints and pretty much everywhere really. I'm 63 now and have developed several health issues over the years including under active thyroid, adult-onset asthma and T2 diabetes. I used to walk everywhere and was fit and healthy until I had my first bout of anaemia. That's just worsened over the years to the point that I was having iron infusions at hospital every 3 months, but when Covid hit that just ground to a halt.

Like many others I haven't been able to see my GP for months and can't remember when I last had my bloods done but I'm sure my iron levels are on the floor. I'm utterly exhausted all of the time and if I do manage to accomplish something like cleaning upstairs I have to go to bed for a couple of hours. Ditto cleaning downstairs.

Had fertility problems resulting in multiple miscarriages. No reasons given other than 'it happens to some women'. Been hospitalised many, many times for 'systemic viral infections' that laid me out and required me to be put on oxygen. No idea how I got these infections but they tended to last a week or so and then would clear up. Lately though I almost permanently feel as if I have flu and my life has become so restricted due to pain, aches, exhaustion, and being unable to concentrate on anything. I used to be sociable and enjoyed an active social life, hobbies and interests etc, but all of that is long gone. I rarely leave the house and some days have to go back to bed within just a couple of hours of getting up.

I believe I did have Covid last May (2020) as I was seriously unwell but thankfully did not need to go to hospital, and regularly test as I have an elderly relative living with me who I care for and since I'm the one who ventures out when I can for shopping and to pay bills etc, I am very careful and mindful of the need to wash hands, sanitise, wear my mask etc. I don't take chances.

Not sure why I'm posting really as I don't have questions. Think I just wanted to acknowledge how much pain I'm in and how wiped out I feel all the time. I'm on low dose Gabapentin for my back and restless legs, along with Zapain at night, and confess I do take Ibuprofen and Co-Codamol sometimes during the day to try and find some relief but in all honesty haven't found any of it helpful or effective.

I'm a person of faith, though, and I pray for people and situations I hear about and see happening in the world, and that keeps my mind focused rather than just shrivelling inward. I think I would have gone mad by now had this not been the case. Not sure if I explained that particularly well but hopefully some will know what I mean.

Sorry this is so long but thanks for listening.

@thebaneofpain, hi, can you be referred to a pain management clinic? It may help with finding a good routine and effective dosing?

Hope you all have a decent weekend.
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@thebaneofpain I second the pain clinic suggestion. It is always worth trying to explore your options.

Hi and welcome @thebaneofpain you do sound like many of us. Covid has made things so much harder with tests and GP. Especially long term vague well nothing we can do conditions. I wish box for multiple horrid conditions rather than try do e-consult where you have to pick one simple condition at a time.

Saw this and thought it belonged here

@HerRoyalRisesAgain haha that sounds very familiar!!

Took my codeine an hour ago and it still feels like someone is driving red hot nails into my ankles and feet.

On a happy note my sister is visiting today. We are donning Christmas clothes, watching Christmas films, drinking mulled wine and eating German Christmas market style garlic bread with cheese and salami that my 12yo is desperate to make for us!

We found out this week that our local traditional Christmas market has been cancelled again and we are gutted so kinda doing our own today!

Lovely lovely 12yo is just setting up my foot spa in the hope it eases some of these pains.

DH is working til 7 today and tomorrow and she is such a huge help when it's just us.

How are the troops this evening? Feels like a very long day. Weekends much worse without structure of the week. Hard find things can watch that don’t need to much attention.

I had to move my pill schedule around to fit in the new extra Amitriptyline pill in the evening.

Apparently it will help my nerve pain in my legs and arms in approximately four weeks!

It makes me so dopey & tiredin the beginning and I am falling asleep on the sofa in the evenings, so I am getting more sleep 😴

Waiting to find out results of Covid PCR tests. As one of our children has tested positive.

Everything crossed, we haven't caught it. Especially me as I am extremely vulnerable to Covid.

But what will be, will be. We will all catch it at some point. It will test if my three covid jabs will make a difference.

Hi all, just found this thread!

I am struggling with joint pain and fatigue, diagnosed with Ulcerative Colitis. Hoping to get a referral to a Rheumatologist though can’t get a GP appointment, so going to try emailing the Gastroenterology department. I guess there are still big COVID related backlogs. I am either working or in bed at the moment, which is somewhat rubbish for my family especially my son. Pain in hands in particular is a real issue, nice to have a thread where people understand!

Akire, I know what you mean about TV programmes, I end up just choosing ones I have seen before so it matters less if I am struggle to concentrate. Watched a fair amount of Friends recently!