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!

@cricketmum84 I'm so sorry to hear you're struggling. For nerve pain ask for Gabapentin I think that's what's recommend. Did they give an indication how long the referrals will take?

@PaperMonster you poor thing. You're most welcome here. We have all been there.

Do you know what's causing it? Can you get strong painkillers from GP?

@doadeer thanks. Not sure as yet - at the beginning of the journey with this one. Had telephone physio, now awaiting f2f appointment. Put my purse and phone under my arm this morning to put my mask on, phone slipped and I caught it; the movement of doing so has just made it so much worse today. Am on cocodamol.

@PaperMonster

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.

Hi sorry you have new pain. Yes we all been there. If you can’t get pain meds tonight sending a stiff drink I know I medicated with alcohol when I’m struggling!

Oh glad you've spoken to someone wonder if it's a trapped nerve?

@cricketmum84

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.

Oh no. Never heard of that though course Vit D can cause problems but that can effect people who have v healthy diets and their body just doesn’t absorb well enough. Don’t blame yourself when you can’t know either way.

We all beat up selves up far to much as it is.

@doadeer no indication of how long referrals will take unfortunately.

She had prescribed gabapentin starting at 100mg 3 x per day so hoping that will make a difference to the pain!

[quote cricketmum84]@doadeer no indication of how long referrals will take unfortunately.

She had prescribed gabapentin starting at 100mg 3 x per day so hoping that will make a difference to the pain! [/quote]
Hope that helps! I take 600mg of Gabapentin 3x a day! I felt very tired and sickly at the start but it passed. Fingers crossed for you

Thanks @doadeer ❤️ she said to start me on a low dose and slowly build it up. Just hoping I'm ok on it as I went a bit spaced out on amitryptaline 😂😂

I think it took me about 4 days to break through the grogg. The pain and inflammation I have makes me very tired, so sometimes it is hard to separate what is the medication is just my body is reaction to what is going on.

Keep me updated on how you get on with it. This thread always be here for you

I came off all the nerve pain stuff years ago as it made my fatigue so much worse I couldn’t get out of bed. So just on morphine and naproxen now.

I have been in tears with the pain today and dreading having to chase up doctors tomorrow. I made it so clear in my online form that this is not my usual type / level of pain - this is like day 1 of a period intensity but for weeks now, and a constant very painful dragging feeling in my pelvis. It’s unbearable, plus my back has flared up really badly again as it always does in school holidays.

My period is late for some reason (also very rare), DH is back to work tomorrow and our twins are off for another week so I’ll have to somehow manage them and my period and my back, all while rationing my morphine in case they won’t issue it early. The gap between my repeats is just some arbitrary amount of time decided on by a GP without discussion rather than what I actually need. Every 7 weeks at the moment. I can just about get through in a typical month but there’s no leeway for those months where my period is worse or a few days longer or I have unbearable pain mid cycle that’s out of the ordinary, or those times where I have three periods between repeats. I’m so sick of having to grovel rather than them being pragmatic about it and treating me like a responsible adult. They could just shorten the length between repeats and I wouldn’t order it until it was needed. But no. FFS.

I can empathise SinkGirl. I am psyching myself up to phone the GPs and grovel tomorrow too. I find I can't win. If I make my painkillers last longer than the minimum time I get "Oh you're not using many, maybe you don't need them at all?" But if I finish them so much as a day or two early it's "You really shouldn't be taking so many, I'm not happy about prescribing more so soon.."
There is just one GP who is very pragmatic and treats me like a grown up but it's a complete lottery which one you get at our surgery.

Exactly the same. If I get one of them, he says things like “you’re obviously intelligent and sensible” and treats me like a person. There’s one woman who just seems to hate me and calls me every six months to badger me into reducing more. I’ve been on the same dose for four years now, totally tolerant to it, it has only been decreased in that time despite the fact my pain gets worse all the time. I’ve just had enough. My endometriosis symptoms started at 12, so more than 25 years of this shit and I’m sick of being apologetic for asking for help with something I didn’t ask for.

It boggles my mind that they think people want to live their life on medication like this. The side effects are shit. Why would you want to have to remember to take tons of tablets, wake in the night and take more tablets, struggle between pain and wondering what it's doing to your body. I was on coedine for ages and couldn't even have a glass of wine without a splitting headache. I don't want to live like that! It's not a choice 🙄 rant over.

Ps... How the fuck do you manage with twins you absolute wonder woman!!!!

I don’t really! They are both severely autistic and non verbal and it’s pretty tough going. But last year I went to tribunal and got them into a brilliant specialist school - things are so much more manageable when they are at school, I can actually rest and be a decent mum and human being. Holidays are brutal though and the days at the moment mainly consist of them watching cbeebies on iPads, which is definitely what will be happening this week!

I always think - if you can get rid of my pain right now, I will gladly come and drop off all the meds from my cupboard this second. It’s not my bloody fault that the treatments haven’t worked, why am I feeling like I need to apologise for it? Drives me insane.

Oh my son has severe autism too but just one! I had a pregnancy from hell and my back is as a result of that so no rush to go again! 🤣

I always feel like they can be quite patronising with advice too... Like have you thought of trying this and it's something you've been doing for years 🙄 yep good one

Worse than the normal pain today. It feels like I’ve been punched in the arm, felt this way for months. Then I ache in the shoulder area. The punched bit is throbbing today.

Offers around tea and chocolate hob nobs get everyone through the afternoon

@Akire thank you 🙂🙂

So I have my addisons test coming up soon. Anyone else had this? Worried it will set my POTS off!

Recently diagnosed with EDS, POTS, MCAS. Also Stage 4 endometriosis/ adenomyosis/PCOS and beta thalassaemia trait too. Low vit D.

My POTS and MCAS meds seem to be doing the trick and starting to feel more human and less awful and low.

Made the massive mistake of having a few drinks at the weekend and it set off a period- I’m on the POP so get random bleeding and seems like when inflammation is high the bleeding kicks in from the adenomyosis. Anyone else gets this?

Hugs to all with kids with extra needs. My eldest had a massive meltdown at a holiday camp yesterday. They called me up and I actually cried. They were really nice about it but it hit a nerve as we are applying for her EHPC and I’m worried about how she will cope at secondary school and we apply in a few months. A huge worry xxx

Oh my day is off to a good start for once. I finally got through to the doctors this morning after several failed attempts this week - they have this phone on the day system and if you don't get in the queue on the dot of 8.00 the appointments are gone. But I got one this morning and the GP called me back within 10 mins and it was the nice one! Not only did I not have to beg for extra painkillers but she put them back on repeat (another GP took them off) saying "I know you only take them when you really need them, you're very sensible. There's no need for you to call every time you need more." Hurrah! Someone treated me like an intelligent human being for once.🙂

That's great news MrsAvocet! Hooray for GPs who understand.

After a few days of waking up without pain in my feet (or rather, just a little bit), this morning has greeted me with extremely sore soles and all the way up to my knees. So that's pretty rubbish. Took half an hour till I could walk. Hopefully they'll settle soon so I can get on with the day properly.

That’s great news. It shouldn’t be so hard get some basic pain killers in the UK in 2021.

Period started here so that’s week of extra awful pain Hooray. Suspect endo but even though been bleeding 18m and extra pain no one really bothered. Told can have coil that may help or could make it worse. You make it sound so appealing I skip thanks.

So I called the GP today to point out that I did the online consult thingie last Tuesday and haven’t been called.

Then this afternoon I got a call from a GP at a different practice in the same group, from a woman who treated me like a human being.

She instantly said it sounds like I need another laparoscopy but she wants an urgent scan, bloods and urine test before making the referral. She was also I think taken aback that I’ve been living with my back issue for four years with no investigations so is going to refer me to musculoskeletal services.

I am certain at this point that my crappy care (from what is a very good practice generally) is down to a specific GP’s opinion that I am some kind of drug addict. That’s twice now I’ve had a call from a different practice and I’ve been treated decently. So frustrating.