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

@Gilead

Does anyone have experience of acupuncture. Sort of mulling it over, but pricey for no effect. Still not sleeping and amitriptyline hasn’t come through yet. Grrr As for losing 12 stone *@cricketmum84*, I admire you. All advice gratefully received, bloody steroids!

I had a couple of sessions of acupuncture through work healthcare a few years ago (I had shoulder pain not connected to current issues). To be honest it didn't really do anything for me and she signed me off a treatment after two sessions saying it was related to stress and not actually a muscular issue. I always suspect I was fobbed off!!

Also you really don't want to take my advice about weight loss! I was sensible the first 7-8 stone and then went vegan l and my weight dropped quite quickly. My neurologist thinks my lack of B vitamins contributed to the virus that attacked my nerves!

I’ve not had it but if my migraines come back I might well be tempted. Probable get more sleep spending money on wine or Gin though.

I used to have acupuncture once a month when I started to have menopausal issues and I was going through a lot of stress following bereavement etc. I did find it helpful, but I have a monthly massage now which I find just as good and less expensive.

The massage lady I go to is very highly qualified and works alongside my chiropractor, I would definitely not go to a beauty salon or similar.

Ooh good news.

I was just preparing to go into battle over my requests to the doctors for more codeine being ignored and rejected.

Quickly checked my online NHS account before I rang and they have issued them this morning!! Yay for painkillers!!

That is good news always a surprise when things go smoothly. Forced myself out for walk to local shops as not been out since Friday and start feel anxious about it. This usually happens after been shut it for weeks/months have battle through. Still warm out, I seem go straight from sandals to boots when autumn hits with nothing in between.

Have bought myself new electric blanket as don’t put the heating on in flat just heat the one room with Lakeland heated air we which is enough. But can’t beat direct heat once you have been out and legs are freezing. Rather worried all bills going up it’s not going be fun winter this year is it.

Covid tests negative but gp said flu. So now I've caught it and we're feeling awful
Gonna try and have a nap.

Oh no bad luck do you everything you need. X

Yeah for painkillers indeed!

I have reluctantly decided that I need something more to help me sleep and to combat my breakthrough nerve pain which is worse in the evening.

Would I be out of order to ask for an increase in my Amitriptyline from 20 to 30 mcg? As I was told it helps me sleep and the worst of the breakthrough pain is in the evenings.

Or they could up my Gabapentin which I have 3 doses of 800mcg a day. They wanted me to be on 900mcg last time but I asked to be bumped in smaller increments as possible. So I went from 600 to 700 and then 800, where I have stayed for a few months. But the pain is worse at night, rather avoid upping 3 doses if possible.

I just really worry about upping any my doses. I don't want to take more pills if I can avoid it but the repetitive lightening nerve pain in my legs is just to hard to cope with especially in the evenings.

Sigh.

@Worrysaboutalot

Yeah for painkillers indeed!

I have reluctantly decided that I need something more to help me sleep and to combat my breakthrough nerve pain which is worse in the evening.

Would I be out of order to ask for an increase in my Amitriptyline from 20 to 30 mcg? As I was told it helps me sleep and the worst of the breakthrough pain is in the evenings.

Or they could up my Gabapentin which I have 3 doses of 800mcg a day. They wanted me to be on 900mcg last time but I asked to be bumped in smaller increments as possible. So I went from 600 to 700 and then 800, where I have stayed for a few months. But the pain is worse at night, rather avoid upping 3 doses if possible.

I just really worry about upping any my doses. I don't want to take more pills if I can avoid it but the repetitive lightening nerve pain in my legs is just to hard to cope with especially in the evenings.

Sigh.

@Worrysaboutalot I sympathis so much. The nerve pain in my right leg especially is absolutely unbearable sometimes. I find I'm worse first thing on a morning. I'm actually gritting my teeth right now because the pain is so bad.

Apart from the few nights blip where I was getting barely any sleep I do think the 30mg amitryptaline is helping me sleep better than the 20mg. I'm trying to take it a little earlier in the evening so I don't feel as groggy on a morning but alas poor DH hasn't seen any action in weeks as I'm usually sparko by the time he comes to bed 😂🥰

cricketmum84 What time do you take your Amitriptyline? I take mine at 6pm. I take pills 7 times a day and that is the only time I can take it.

My right leg is worse than my left too. Plus I had lost 6 stone just before I started falling and dropping things. Noone mentioned my weight loss might of trigger any issues, I wonder if that is why it happened to me too. Sadly I put all the weight back on, plus more, sigh 😥

@Worrysaboutalot

cricketmum84 What time do you take your Amitriptyline? I take mine at 6pm. I take pills 7 times a day and that is the only time I can take it.

My right leg is worse than my left too. Plus I had lost 6 stone just before I started falling and dropping things. Noone mentioned my weight loss might of trigger any issues, I wonder if that is why it happened to me too. Sadly I put all the weight back on, plus more, sigh 😥

Yes it was my neurologist that suggested the link to weight loss. He was rather shocked when I told him how much I had lost. I'll have to dig out a before and after pic! He said he sees a lot of patients who have restricted eating with no supplements or B vitamins who have similar issues.

I take my amitryptaline at around 7pm. I was taking it just before bed but could barely open my eyes some mornings!

I was eating relatively healthy but I have malabsorption issue which does make me deficient in vitamins and minerals at times.

I need to exercise more but I find it difficult at the moment.

I have spent the day quoting nhs prescribing guidelines at my GPs surgery, not even the GO. I was refused paracetamol and told to buy it.
Could be interesting, I can’t get out, I can’t add enough to my online shop and guidelines state anyone taking it regularly for chronic pain conditions is exempt from said guidelines.
The rather sarcastic email sent to the practice manager pointed out that if they wanted to quote guidelines at me, then perhaps they should read them thoroughly beforehand.
I will know tomorrow whether I have won. May go to the press if I don’t.

Do you have any friends or family can do sweep for you? I’m always happy post some if you desperate! I often ask friends when I know I can’t get out as packet is only 2 days on max dose. If you can’t get out 3 weeks you need a good stash.

@Gilead I would be more than happy to pick up a couple of packs of paracetamol and post them on to you xx

I get what saying though it’s one of many long term problems we have that should be just given on repeat. It’s like when I was on low dose codeine they like oh just buy it you can take everyday. But we know pharmacist are worse than doctors receptionist when comes to buying coedine. You then forced trek every chemist into area so you don’t look like are addictive! Explained to chemist they like oh Gp needs give you../ GP no we don’t prescribe you can just buy it! Doesn’t help I’m wheelchair user so eveyone assumes I’m on seriously good drugs and must be drug seeking!

What lovely people you are!
I am lucky enough to have a wonderful team of friends and if the pharmacist is still in breach of guidelines I can guarantee my 100 by the end of the week. I also add two packs to the fortnightly shopping delivery so I’m okay. I’m frustrated though, there are vulnerable people who don’t know how to argue their corner.

Absolutely fuming with DS1's school. He's been off school since Friday with what has now been confirmed as flu. Friday, yesterday and today I've phoned the school and kept them updated. I also emailed them when flu was confirmed. Well an attendance officer turned up on my doorstep. DS1 answered the door as he's quicker than me and she began questioning him at the door why he hadn't been in then asked where I was. I got to the door and she said "he looks fine" I told her that if I thought he was fine he'd have been on school. She then said she had been trying to contact DS1 since Friday. I asked why she was trying to contact a child and she backtracked and said she meant me. I told her I'd been in contact with the school for every day he'd been off. She then said DS1 will have to catch up on missed work and that if he doesn't he'll be on detention after school. So I asked why he's being punished for being ill. Apparently its policy so I arranged an appointment with head of attendance. He was extremely apologetic for how she spoke to me, completely understood that DS1 was unwell and given he has asthma and a heart condition, flu can be very serious for him. He is going to discuss his staff members approach with parents as she should not have been so abrupt and downright rude, and had she taken the time to check the notes she'd have seen I've been in contact with them to discuss his absence and he has assured me DS1 will not be given detention nor does he have to worry about missed work, just get better.

That’s awful you must both be shock up. Do they really send someone sound after 3 days in covid? Without a single missed call to your mobile or landline? I understand catching up at some point but you can’t do double weeks work in few days while getting over being ill.

Wow, that’s a really appalling approach, @cricketmum84. I hope you and ds aren’t too distressed.

I've been doing a little research & discovered that my migraines are not as diagnosed, after many years & tests. They're not migraines at all, but cervicogenic headaches. This & all doctors seem to believe the only acceptable solution seems to be tamp down the symptoms with drugs with horrible side effects..... That they tell me are myths....

I'm in my second week of chiropractic treatment & he's already picked up the issue of my neck & shoulder muscles being incredibly tight & triggering my headaches very easily, to the point they're constant. He told me it'll be a few more sessions before I see real results but I'm already slightly better. Trying not to be too hopeful. I've also added magnesium lotion as someone else on here suggested for muscles. Didn't know it existed & can't take tablets because they have horrific side effects!

Ironically a friend who has a non pain chonic condition which affects her life (blacks out several times a day) thinks I'm crazy for taking the chiro option because you still have to keep going monthly long term for maintenance. Odd, I would have thought she'd understand that is a small price to pay for relief!!

How is everyone today? I finally managed half a clean of bathroom it was a disgrace! Fees really positive when can do something that can see makes a difference.

Any news on GP @Gilead?

Hi, had a chat with the clinical pharmacist this morning. My prescription is on its way and is on repeat. Why though does it all have to be such a battle?

Hope everyone else is doing okay. 💐

@Akire it does make you feel better, even if it exhausts you, well done!