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

Does anyone else feel use alcohol as a crutch? I get stressed if non in the house even though I try and keep roughly for 14 u it’s a week I am primarily using because of pain not for “fun”. I need have something that can hit the mark when painkillers don’t. Especially when have no regular supply and it’s like going on beg for. I suppose that does make me a problem drinker?

I dont use alcohol as a way to eliminate pain, only because I know I'd drink every day if I did so I limit myself to Christmas.

Wow that’s some Will power, I’m half tempered tell GP that and I need regular supply pain killers but I don’t want use it against me or refuse me further meds because I can’t be trusted etc it’s not as if I’m getting drunk but on bad day those 2-3 units just help you cope

I haven't drank for years and I did use it to smother the pain I back then which is all now coming to a head. I could not deal with the hangovers becausebI can't just have 1. It's the while bottle or I'm not coming to the partt

I know what you mean about being afraid to speak to the GP about it. I'm always afraid they'll think I'm a junkie

Akire I hear you. Not now but I have done this in the past and totally understand
Hope everyone's day is going well. So pleased you are a step nearer to a new wheelchair Rainbow
I've had a rough few days with my extremities unable to get them warm and very painful. Consequently my mood has been rock bottom so have been totally on survival mode with only the basics being done as in DS's uniform, school lunches and our dinners.
Thermal socks , sheepskin slipper insoles, legwarmers, elevation, etc etc. DH is luckily great and very helpful.
Had a nail appt yesterday which I wanted to cancel as I couldn't get up but DH sorted me out an Uber there and back. It has cheered me up a bit.
lolaflores I have a fibro diagnosis too now but seem to have to chase gp for everything. Don't have the energy some days!

So sorry I meant Akire re wheelchair
I don't know what I'm talking about!

It’s ok it’s hard remember who said what isn’t it. Cheering self up with chips for tea

I made egg on toast just now. Followed by Angel delight ice cream kids are happy they love "poppy eggs" and ice cream so it's like their perfect meal.

Wait there’s angel delight ice cream?!

Only available in iceland at the minute but yes! It's delicious, exactly how you expect it to taste

Hello, stop. Wait.
Angel Delight Ice cream
Well I never...
I have a background in substance misuse and feel highly aware of drug seeking behaviour and how wary GPs are of it. But, I also know they are aware of people under reporting pain just as much. I tell my GP that there are times I need more and times I need less. I think its when there is a steady increase in demands and I creasing dosage with frequent visits but not objective signs of pain/discomfort that the red flags start going up.
Managing pain through GP is actually not ideal as it's a really big subject, a specialist area and with chronic pain, that needs a flexible response.

Ooh I'm going to make Angel Delight today.

None of the painkillers working today. Can't lift arms. Hip won't give up with its nonsense.
What helps when the painkillers won't?
I'm being an undiluted bitch to DH
He keeps asking what I want. He works away all week yet The Weeke ds feel pointless co I can't do much. Walked yesterday to try be normal but I think it's made things worse today.
Spent morning crying self piteously but as I can't find a way past it, I am at a loss.

@lolaflores days like that are the worst. Have you got a tens machine? It might help distract you a little from the pain at least

Ill get one. Haad one years back but don't know where it may have got to. Thx

To be fair if your struggling so much and husband away all week the last thing he should be asking is a long walk on one day he is home. I know how you struggle get things done in the week. Does he have any idea of how you are?

Tens just stick on area and see how feels. You can tell straight away where it zaps. Often you need move it further away. For my hip I might try one on side of belly and one in lower of my back.

The diagnosis is still very fresh shall we say and he isn't a person who acknowledges physical difficulties really. Although I've been deterioration g the last 4 months quite quickly. He deals with things by asking for I structure s but I'm in too much pain to formulate an answer. I've sent him to get a TENS machine.

He isn't unsympathetic it's just he doesn't understand the relentlessness of this. Equally, I should bot have attempted walking as far as I did. Now I have to find a way to manage it.
We can afford a cleaner so I'll get that done too because I can't banjax myself keeping this place straight.

I worry this will be such a strain on us. There is the suggestion there are weekends when he can't come home and I don't know what to 5gi k abkut that

Sound tough, is his job providing good enough income that on top of carers you can pay for therpy/activities or even carer if you need? With a long term sick/disabled partner I would expect if away all week he want spend time with me. Particular if you can’t do much or get out and about on your one in the week. It’s a lot be going on in few months when dealing with body going on strike

Yes, his job provides very well. It has meant I could stay home with youngest DD, although he could not have had the position he has if I had wanted a career in my field so...???
But the salary comes at a price. A lot of long hours. Travel. He is addicted to the stress I think and lives at quite a clip in parallel with us if that makes sense.
And yes, my body has gone on strike. There is the sense it is withdrawing itself from activity.
I am trying to organise the therapy etc which is a task in itself. I've had physio before for my back and it was heavy going initially.
Mentally I see everydayife as an obstacle course

Lolaflores
Is he a half decent cook? Could he cook a few meals to freeze for you and the kids for during the week? Or buy some nice quality m and s type ready meals and things for the freezer for the week?
Sorry you are having such a horrible weekend xx

Maybe once you have plan for cleaner and all other stuff he start taking changes more seriously. Plus once the house is not stressing you out or taking all
Energy you can focus on finding right therapy etc small steps at all. Also might be worth getting OT assessment even privately if money not issue. Things like with stairs and bathroom you don’t want wait for accident before look at making it easier.

Mentally I also see each day as a serious of problems to overcome to get to bedtime. So I understand you there.

Thank you so much h everyone for your responses.
I am taking all of them on board and putting on place as we speak. I don't want to lose more ground simply because I haven't become more efficient in responnsebto the limitations because it will only set me further back on the long run.

Can I join for a whinge?

I have M.E Fibromyalgia, Endo, and a couple of other not so lovely conditions. I keep ending up in a circle with taking amitryptyline. It really helps for the fibro pain, migraines etc. But the side effects really wear me down. It gives me bad restless legs and makes me have quite bad brain fog.

The brain fog is the worst bit of it. I take it as early at night as I can, only on the lowest dose but it's bad for me. I have tried other things like Noritryptyline, Gabapentin etc but they are even worse.

So I end up quitting the ami when I'm feeling better and it's always ok for a few weeks, but then all the pain starts to build up again. This is about a 12 week cycle for me. I have to restart the ami tonight as I'm in agony with my fibro pain.

Has anyone ever found another medication that is better than this, I think the only thing I haven't tried is the Gabapentin alternative. I seem to be really sensitive to any medication that used as any form of anti-depressant.