Chronic pain Cafe - support thread #3 All Welcome

[Akire]

New shiny thread to get us through December & Xmas and possible New Year!

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 with it. Everyone is very welcome

Hi @Pohtaytoes welcome to the board, there are lots here on that med which may be better placed advise.

It’s drag when once you get one condition down to manageable level up pops another one it’s so draining isn’t it.

Have you tried magnesium on legs as spray or tablet? I get sometimes and so annoying.

Hi @Pohtaytoes and welcome.

I use Ami on and off. My brain fog is shit anyway so I've not noticed it any worse. The way I see it is I toss and turn in pain at night if I don't use it. So if it helps me sleep, then that's a win. But like you, it goes in cycles.

Pregabalin I think is the better alternative to Gapapentin. But this is only what I've heard and will differ from person to person

I've started 20mg x2 ami at night because the pain at night was a slow form of torture. I can see how resistance build up to any drug so reducing/stopping then starting again enhances the effect and mea s you don't have keep upping it.
I bought a TENS machine today. No immediate relief but I'll keep at ut.

Ibuprofen/codeine from the pharmacy (12mg/200mg) I think, is a good buffer during the day. Naptoxen kills my stomach but if things get desperate i take 1.

It's all a balancing act. And I have felt so bad today that nothing g seemed to help. I resent the dependence on tablets and potions. I wonder have I developed a sort of magical thinking around different combos of drugs and when to take them?

I've said it before; psychological support for chronic pain would have such a beneficial outcome and in the end lessen some of the need for meds. I've just had an hilarious conversation with an old friend and u forgot the pain for half an hour and even ow my mood is better. The topic of pain was not on the table which is refreshing and I do feel better even if it's temporary.

Even though some days its hard to laugh, today I forced myself

@Akire

Hi *@Pohtaytoes* welcome to the board, there are lots here on that med which may be better placed advise.

It’s drag when once you get one condition down to manageable level up pops another one it’s so draining isn’t it.

Have you tried magnesium on legs as spray or tablet? I get sometimes and so annoying.

Hi yes I do use magnesium spray on my legs and bath salts. It does help a little with the restless legs, but it's still pretty painful at night.

Hi @Pohtaytoes I get restless legs too. Its horrible.

@RainbowZebraWarrior

Hi *@Pohtaytoes* and welcome.

I use Ami on and off. My brain fog is shit anyway so I've not noticed it any worse. The way I see it is I toss and turn in pain at night if I don't use it. So if it helps me sleep, then that's a win. But like you, it goes in cycles.

Pregabalin I think is the better alternative to Gapapentin. But this is only what I've heard and will differ from person to person

Thanks for the reply. I think pregabalin is the only one I haven't tried yet, my GP is reluctant to try it not sure why maybe cost related.
Apart from amytriptyline the only other thing that ever helped was duloxetine. It was great but caused major insomnia and was a nightmare to come off of.

I can't take any anti inflammatories either due to stomach problems. So of course I end up with opiates during flares.

Sorry for the whinge, I'm sure there are lots in a similar situation.

It’s not winging it’s bloody hard work being in pain all time and juggling meds and everything. Helps to be able say it here. We do t expect people straight after surgery in pain carry on as normal but once you have chronic pain all bets are off and you are supposed carry on as normal.

Having horrible weekend with pain not at screaming level but just horrible horrible. Got scan on Tuesday then be back at Gp talk about meds again.

Yes, it's not whingeing, it's why we are here on the chronic pain board. It's either pain, or massively fucked up pain. So hugs to all.

I'm in fucked up pain mode and was pissed off when PIP people told me I couldn't possibly be in so much pain because 'only' on 240mg Codeine a day plus paracetamol plus Amitriptyline. Yep, still doesn't stop the pain.

Also can't take Naproxen due to stomach issues / Hiatus hernia / EDS (take pick)
Can't take Celebrex / Celecoxib due to severe Asthma.
For some reason (EDS, likely) I have a high tolerance to meds. As in they don't bloody work. Same as local anaesthetic. No effect whatsoever. That's a fun thing to find out. No partner as I can't tolerate people near me.

Sorry. I'm in meltdown / shutdown mode and having two counselling sessions a week. I've been keeping a low profile as self preservation. I'll be back on a good day

Did you decide to appeal the PIP decision. If that was only reason be refused must be able get it confirmed that is very high drug level.

I'm another with a really high med tolerance, always need extra local anaesthetic as it just doesn't work. I've never needed GA so don't know about that.

I'm in a ridiculous amount of pain today. I've taken 240mg dihidrocodeine, 800mg celebrex, and 50mg ami, as well as max dose paracetamol and it hasn't touched the pain. I'm not meant to take any more of anything today either as I've had my max dose in 24 hours. I've had the tens machine none stop on my back for 2 hours now and I just want to cry.

Hugs Royal that’s shit x

Weird about local anaesthetic not working well for others here. Seems to be a thing with other ME people I know too. Dentist trips are awful as I never get properly numb.

Sedation doesn't work either. I had sedation for an endoscopy last year, it didn't work at all. And I have had hardly any benzos in my life, so it's not like I have grown resistant to them.

I'm supposed to have a colonoscopy soon and I'm going to insist on a GA for it as no way I'm doing that 100% conscious.

Funny about dentists I have to ask for double dose as I’m Never numb when start drilling. I’m also red head and apparently it’s a thing that we have that anaesthetics don’t work as well.

My DD2 is red head and also its a red head thing to have sensitive scalp and feel the cold more...all true in her case

I have the weird anaesthetic thing too! My mum
Is the same and blames it on something wrong with our veins 😂

Had to have a tooth outlet a few years ago and ended up with around 16 injections including down between the tooth and the gum which was worse than the extraction itself! Also had 3 teeth out as a teen for braces and the usual 4 injections per tooth had to be doubled cos I could still feel it.

Had to have double dose for my implant removing too. She cut into my skin and I almost hit the roof!

I just warn them now that I'm a bit resistant to it 😂

Hope everyone gets some Kip tonight, had numbed pain some nice Gin earlier but affect has worn off now. Going be
Long night I think. Good luck!

I had my wisdom teeth removed and the anaesthetic wore off while they were pulling. I screamed and they just yanked then out without topping me up

I did a long post last night after Akire's and it's gone this morning
Morning all.
Hoping we all have a gentle day today and pain is more manageable this morning

Awful awful night last night. Woke every half hour from very strange random dreams that again I was acting out as I woke! In one I was reading a magazine and when I opened my eyes I had been holding the pillow as if it was a magazine! It's so strange!!

Pain bad again as the exhaustion is definitely making it worse x

Morning. Pain is bad again today. I feel like I've been hit by a truck

im also resistant to anaesthetic! i was born with strawberry blonde hair and still have a lot of natural red in my hair when its its natural colour so im not surprised.

my head is still bad today, i really hope they get me in with the neurologist soon, i cant carry on with this head pain

Morning all, did manage sleep around 3 so not long up. Pain seems better than yesterday but that’s no great achievement considering how horrendous it was.

There are advantages living on own and not working least literally nothing to get up for which can be blessing some of the time when it’s not dead loneliness and sense of utter lack of Purpose!

Afternoon all hope everyone is not doing to badly today. Any good news report?

Good news here is my doorbell camera turned up.

Whoop great news always handy even without teenagers kicking your door in.