Chronic pain Pub Corner - support thread#4 All Welcome

[Akire]

Welcome to our new shiny thread for February. The lattes and expressos were not quite hitting the mark so we have moved to the pub. Whether you need Diet Coke or stiff drink help yourself we have a tab going and hunky staff are very attentive.

Sorry hear people have had bad night. It’s like been drugged up isn’t it. Gentle day to all

Gentle hugs from me too. Tiredness exacerbates pain, so can be a vicious circle.

Pain clinic in the morning with the head if the service as the other staff don't feel qualified to deal with me I'm a lot to handle apparently

another sleepless night for me. this is driving me mad not being able to sleep. waiting on some sleeping pills coming then i am sleeping as much as i can

Good luck at pain clinic @HerRoyalHappiness

@OneNightTimeMenaceStrikesBack

another sleepless night for me. this is driving me mad not being able to sleep. waiting on some sleeping pills coming then i am sleeping as much as i can

How long has it gone on for and could you be referred to a sleep clinic?

I'm pottering today. little bit of work, rest, little tidy up, rest etc. I'm sort of feeling that I know what my balance is now (of course all goes out the window on bad days)

Weather is flipping awful, but trying to be careful with the heating - as we all are. I guess I'm lucky in a way as I paid my mortgage off 5 years ago. Worked my arse off for 30 years mind and did 3 jobs at times and never really socialised while all mates were out partying.

In between work, I'm watching Servant of the people. It's so bloody hard to watch though, knowing what's happened since.

@RainbowZebraWarrior ive had insomnia my whole life this just seems to be an especially bad patch but i am going to ask about a sleep study as ive never had one done

Sleep study could be really useful one

Pain clinic was crap. They asked me to stand on one leg. I said I can't. They asked me to try. I said I can variety stand on two. They asked me again to try so I said fine and tried. My knee gave out under me and I fell.
They want to work on building up the muscles in my legs and shoulder to regain movement in my shoulder and to get me stable on my feet. But it'll be a long slow process because we have to be extra careful with my EDS.

Sorry it was crap. What fantastic new idea do they have if you can’t even manage day to day on stuff you need to do?

Was Interesting BBC had film on half million women on list to see Gynaecologist and being in pain. Would loved them do sown on what your Gp says while you are waiting. I’d like mine it be well we don’t like give out meds you know for addiction reasons!

Asthma bad today so hardly manage get to sleep and my Memory foam bed feels like I’m laying on rocks. No max meds today just about avoided so far. This is what I talked to doctor about I end up having save them for awful days and be in pain that I shouldn’t be in because of their “care”

@HerRoyalHappiness

Sleep study could be really useful one

Pain clinic was crap. They asked me to stand on one leg. I said I can't. They asked me to try. I said I can variety stand on two. They asked me again to try so I said fine and tried. My knee gave out under me and I fell.
They want to work on building up the muscles in my legs and shoulder to regain movement in my shoulder and to get me stable on my feet. But it'll be a long slow process because we have to be extra careful with my EDS.

They should not have repeatedly asked you to stand on one leg. If pain clinic ask me to do that, they will promptly be told no. My physios and other team know I can't do that.

Please ask Physio about Movement medicine class for EDS. It's the one I've bern doing for 5 months. Most patients with other joint problems only get an 8 week course, but obviously EDS is such a complex and long term problem. I keep doing questionnaires every 6 weeks to measure progress. I'd say I've maybe improved 5 to 10% strength wise. That might seem minuscule for the effort I've put in, but actually it's huge. I reckon if I hadn't been doing the weekly rehab, I'd likely be 10% worse, so you can see why it's so beneficial. It's hopefully preventing me from deteriorating further too quickly. They always tell me they have to go low and slow with EDS, and that's so right.

Also, please please ask if they have funding for HyMo suits. I know I'm a pain in the arse, I know it's exhausting, but it could be life changing x

@Akire

Sorry it was crap. What fantastic new idea do they have if you can’t even manage day to day on stuff you need to do?

Was Interesting BBC had film on half million women on list to see Gynaecologist and being in pain. Would loved them do sown on what your Gp says while you are waiting. I’d like mine it be well we don’t like give out meds you know for addiction reasons!

Asthma bad today so hardly manage get to sleep and my Memory foam bed feels like I’m laying on rocks. No max meds today just about avoided so far. This is what I talked to doctor about I end up having save them for awful days and be in pain that I shouldn’t be in because of their “care”

@Akire that's so crap. I was denied/ rationed with my pain relief for a long time and it made me thoroughly miserable. If you get hosp appt through again, make sure you mention to them. It's what made the difference for me. As consultant said ig wasn't right and I should be allowed x dosage for x problems. Now I just say, "no, sorry consultant said"

My friend told me last night there was a documentary on. Not sure if it's the one you just mentioned. The figures are shocking and women are just left to put up with so much.

I have mammoth Immunology appt early tomorrow. Not looking forward to city centre trip getting there, but just preparing all my notes as it's taken me a hell of a long time to get to see this Dept.

I also had an appt to see my Orthotics specialist on Friday. Unbeknown to me, it was to fit me with my new Hy Mo suit. It is her last day before going on Mat Leave. They've just rang and said it's been delayed by a couple of weeks but lovely Orthotics person still wants to fit me with it as I am her project and she wanted to see the finished result. I'll be having it fitted at that factory that is making it. I'm quite overcome about that cos I thought they were still arsing about signing the funding off.

Had reasonable day second day no codeine though was fine line this afternoon. SEE we can self regulate with meds no one of us take them for fun just have dry mouths and banging headache and then still be in pain.

Still no hospital apt not sure what wiggle room is when say 12 weeks or if that is 12-18 before technically is late. Bowel pain slowly down been 24 days no wheat. Still not 100% if that’s cause or something more serious but can’t take any more GP crap.

Did start writing cross letter to post about removal of meds but can’t decide best course of action.

Managed get friend try one those remote GP today as needed urgent Time sensitive meds as her GP is to g at 8 for hundreds of people. Then tells you off after 90min on hold for not ringing earlier and no you can’t be seen. In 20min had consultation and meds sorted. Think that may well be the way to go in future.

Do hope you get suited fitted before she has the baby! Must be great be part of exciting new projects.

Hi all. Hope everyone ok.

@Akire I would definitely write that letter. They need to be told. Some folk I know have been singing the praises of the remote GP appts. Not used one myself but do have option via Livi at my surgery.

Had v complicated Immunology appt today. More diagnoses, more tests and follow up appts which includes specialist dietician so hopefully that will be helpful. Does anyone here have Omalizumab injections?

I did download app but asking me about my surgery and didn’t know why. How does the link work? Do they have to inform Gp over everything you say?

How are you feeling about new diagnosis’s?

I think they inform GP of general discussion and outcome. Just so it goes on your notes.

Can honestly say I've never been in so much pain as I am tonight. I knew this long hospital appt and tests would take it out of me, but this is something else. Because of my symptoms which include bone pain, they are investigating a rare form of Leukaemia. Other than that, I have two types of urticaria, so increased meds for that. And my asthma has gone from moderate to severe hence me asking about Omazilumab injections.

Hope everyone ok. Sending hugs to all.

Sorry to hear pain is up so much. I get bone pain it’s dreadful think mine is from years of no vitamin D and no one nothing to check it.
At least it sounds like they are looking after you and looking into what may be wrong

@Akire

Sorry to hear pain is up so much. I get bone pain it’s dreadful think mine is from years of no vitamin D and no one nothing to check it. At least it sounds like they are looking after you and looking into what may be wrong

I know so many symptoms can be so many things, but just wish there was a way of plugging ourselves in and getting receipt with diagnosis and prescription. Can be lack of Vit D, B12 allsorts. But I really think we know our own bodies and should be listened to. Also age doesn't help (I'm on HRT so lots blamed on menopause)

It'd be so good to be able to plug ourselves in and get a list of what's wrong and how to manage them.

Yes like Star Trek zapper that doesn’t say Your fine!

Got my kidney scan through so it be week 10 post infection. It is still improving so feel like slight waste of hospital time but it’s not normal still be niggling and pinching so who knows though could bet on it being “fine”. I take the getting better over finding an answer any day.

Hope everyone is doing ok. Gilets have you escaped yet?

Not sure if it's just me, but I'm having major problems with MN tonight. Hope all ok.

Sorry all, I'm useless at checking threads!

@Akire I agree with what you were saying about the doctors managing people with other conditions. I find it really frustrating as I've had CP my entire life and I'd know if the pain I'm getting was due to CP. like you, I still think I suffer from Fibro.

Sorry to read about all the threadies having bad nights. Hope you all have a better evening tonight ❤️

another rough night though i did manage a few hours sleep at least. my knee and hip subluxxed and it was a pain tot get them sat right again so i couldnt get upstairs to bed so slept in my chair which is thankfully comfortable

Glad you managed to get comfortable last night, @OneNightTimeMenaceStrikesBack ❤️

Having a bit of a flare up right now. My whole body is burning and I keep yawning.