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.

I’m in awe of your budgeting @TheDoveFromAboveCooCoo don’t think I could fed self on £10 a week.

Been brave filled in nhs app advice form. They seem change it every few months, go on surgery website nothing about using an app. But last time Made me Download a totally different medical app wish stick to one.

Kidney pain woke me then went. Now just low level ache and pinching but no other UTI or infection signs so not sure. Anyway the auto reply says be on touch by 630pm on Monday! That’s problem with Fridays unless you on ball at 8am your out for 3 days. Hard to know when to ask or not. So it’s done now have wait see. We may have full sweep of appointments across the board

It's always sods law that things kick off on a Friday @Akire Me and my Mum say it constantly. It's been minus temps here and I know if I don't get covered up enough around the lower back, I get a 'chill' feeling in the kidney area. Pleased you don't have any other signs of UTI etc.

Well, once more into the breach and all that. Off we pop back to hosp for DDs physio review

I'm hypermobile too and my son is autistic actually (and I suspect hypermobile). I do a lot of pilates to support my pelvic stability and have a strong core to help my back. I find it very hard to build muscle so it takes me agessss.

The hypermobile / autism links are interesting - I think they don't really understand it yet do they?

Thanks @RainbowZebraWarrior when you always used to a certain level of pain thats just “bog standard nothing to see here ignore”. It’s hard when certain body parts like kidneys have infection as it’s way below normal levels of pain. But google is full of warnings that any kidney pain is bad get it looked at etc. We tend easily tune out minor things like this. I’m waiting for that Star Trek app where you can scan yourself and tells you straight away

Hope hospital goes well may the parking fairy be with you!

Hello, I’m new here. I’m a Long Covid sufferer. I’ve been suffering with pain since I returned to work in September after being off for four months. I’m seeing my GP tomorrow about pain management amongst other things. They’ve put me on new medication for peripheral neuropathy but from what I have read this will only get worse without treatment for the cause. Does anyone have this and what have your experiences been?

@Justalittlebitfurther I have peripheral neuropathy, I take amitriptyline. It’s helped, it doesn’t seem to have got worse. Mine is due to specific nerve damage.

Thanks @Gilead that’s what they have prescribed but I can’t see much difference yet. Did you build up gradually?

I did, I take 20mg most days but if I know it’s going to be a day when I need to do more, I take 30mg. There is quite a lot of leeway with amitriptyline. They do take a good couple of weeks to kick in, and don’t forget to keep on top of your other pain relief. (I can be awfully lax about that)!

Hi @Justalittlebitfurther I also take Amitriptyline for PN. My friend has Long Covid and there have been articles written about similarities between the symptoms of LC and Ehlers-Danlos syndrome. The hope in the EDS community is that it will be taken more seriously now from a pain management point of view as so many more people having similar issues (There are around 15,000 people in the UK with EDS but numbers of Long Covid patients are looking near 1 million now I think)

The last time I saw my friend with LC, the conversation was crazy. He was telling me about brain fog and I was sympathising. The conversation went "You know the thing, you know what I mean, the wotsit thingymajig, oh, what was I saying? I forgot, oh yes, anyway, I was talking to oh you remember her we went to school with her, anyway, her brother said, oh I forgot again.." Made me feel like someone else got it.

The GP actually took me off my other meds when I was first on Amitriptiline until I was in so much pain I didn’t know what to do with myself. It’s been awful. So now I’m really focused on my making sure I get it right as it’s taken a while to get over that. I just want the GP to take me seriously. My appointment tomorrow is the first time I’ve been seen in person since I got covid in 2020.

@RainbowZebraWarrior I have heard of the similarities. I really have the hope that pain management for so many conditions is taken seriously it’s a terrible thing to live with. Before LC I had never heard of brain fog and it really is so debilitating.

@Justalittlebitfurther I have motor and sensory neuropathy so a bit different.

Mine came on incredibly quickly, I went from fine to being unable to walk within a couple of weeks. My neurologist thinks I had a virus that attacked my nerves.

They are hoping things may improve for me, maybe not pain wise but with lots of physio I may be able to weight bear and take some steps again.

I'm in 40mg amitryptaline but going to push for an increase as I'm in agony on a morning. I almost passed out with the pain this morning. I'm in a constant fight to get them to prescribe codeine and to sort a pain clinic referral.

@Justalittlebitfurther

Hello, I’m new here. I’m a Long Covid sufferer. I’ve been suffering with pain since I returned to work in September after being off for four months. I’m seeing my GP tomorrow about pain management amongst other things. They’ve put me on new medication for peripheral neuropathy but from what I have read this will only get worse without treatment for the cause. Does anyone have this and what have your experiences been?

Hi and welcome I am a LC sufferer too. Coming up to 2 years now. Brain fog, extreme fatigue, neuropathy in hands and feet and all over body pain if I do anything other than rest. I am on amytriptiline at night. ( I have other chronic conditions too)It hasnt made any difference to my pain at all but helps a bit with sleep. I need a stronger dose I think. Only on 10 at the moment. I take codeine every day for pain. Good to see a fellow LCer here.

I'm very interested in how your appt goes. Good luck with it and do come on here to let us know.
I am seeing my gp on Thursday to insist on help/ referrals as she is pretty rubbish.
Last year she said that she thinks I have fibromyaligia now.
I just don't know what to attribute to what but there is no improvement.

Went for a long drive/short walk around a village with a friend yesterday who needed to drop some things at a shop she stocks.
Unfortunately it was cobbled and a little hilly so instead of "waiting to see how I got on" i immediately used my walking stick.
We werent out long but I was in horrendous pain all evening and though the night.
Pain woke me at 7.

I haven't been on for a few days as I have been feeling very doom and gloom.

Gentle hugs to everyone and fingers crossed for a good day ❤

Gosh that was long sorry

Morning all. Hope everyone managed sleep

@Wildthingsinthenight I think we try too hard sometimes. We want to feel well enough to be able to do things. Perhaps be as well as we were in the past. It's a horrible thing to come to terms with when you have so much pain and the smallest of things seem to make it worse. I think I'm happier in myself now that I've finally accepted how I am and my limitations. That's not the same as giving up. Absolutely not. Far from it. I still go to my gentle rehab ti try and keep my body strong. But walking on cobbles would be a no no for me now. But not so long ago I'd have tried. And it would have made me miserable and in agony. Which makes you feel worse emotionally.

I understand how you've been feeling

@RainbowZebraWarrior

Morning all. Hope everyone managed sleep

@Wildthingsinthenight I think we try too hard sometimes. We want to feel well enough to be able to do things. Perhaps be as well as we were in the past. It's a horrible thing to come to terms with when you have so much pain and the smallest of things seem to make it worse. I think I'm happier in myself now that I've finally accepted how I am and my limitations. That's not the same as giving up. Absolutely not. Far from it. I still go to my gentle rehab ti try and keep my body strong. But walking on cobbles would be a no no for me now. But not so long ago I'd have tried. And it would have made me miserable and in agony. Which makes you feel worse emotionally.

I understand how you've been feeling

Thank you ❤ You're very wise!

Yes acceptance is the key. I still can't decide what is worth the pain and what isn't of you know what I mean?
Seeing my friends and having a laugh was much needed so maybe I just need you start expecting the aftermath more. I think I'm ever hopeful it won't be too bad. Magically!
So maybe prepare for it and make sure the few days after a "thing" are free for recovery.
A minefield!

Morning everyone. Kidneys seem to be behaving after all fluid yesterday so will keep at it today.

Though been good all week and lost 2 pound now it’s all back on! Didn’t eat below calories yesterday but not over. So back to where started.

I always factor in “payback” when your body has tantrum over perfectly normal things. Sometimes you can push it for two days but then the great kicking will commence.

@Akire

Morning everyone. Kidneys seem to be behaving after all fluid yesterday so will keep at it today.

Though been good all week and lost 2 pound now it’s all back on! Didn’t eat below calories yesterday but not over. So back to where started.

I always factor in “payback” when your body has tantrum over perfectly normal things. Sometimes you can push it for two days but then the great kicking will commence.

Good news about kidneys but annoying about your 2 pounds! I have not been cc since weds as my heart just wasn't in it and food comforts me Yes I must think more about payback and spend more time deciding what's important. I feel like the week building up to my period my pain is much worse too. Anyone else see a difference depending where you are in your cycle?

@Akire pleased they are behaving themselves a little better. Keep up the good work with fluids.

I've just been weighed. Also been good all week, but lost nowt. As you say, you have to factor in payback. I reckon my body just been through too much stress this week. Physical and emotional exhaustion from so may appts.

That’s good point @RainbowZebraWarrior all stress hormones body wants to protect you for fight ahead and holds onto it all. Is next week looking any better?

Managed to pop out down road to shop and got a new mop head. Thrilling stuff here

Took DS2 for his covid jab this morning. Very proud of him. He didn't have a meltdown, although he was panicky and stimming all the way there.

That’s great bless him

Great news about DS2 Her Royal

Akire, next week much better thankfully. Only my usual rehab appts so far.

@wildthingsinthenight so interesting to hear how you are getting on. I agree wholeheartedly with not knowing what to do and what to say no to. I can work (which I am grateful for) but as a consequence I can’t do anything else and it really gets me down.

@wildthingsinthenight GP appointment was fairly useless. They upped my Amitriptiline as I am currently taking Naproxen and can’t continue to do this long term. I’m allergic to coedine unfortunately. The Dr said I could pursue a diagnosis of CFS or fibromyalgia but that the treatment would be the same. She didn’t acknowledge my depression or request for a referral. I’m at a loss as what to do next really. It sounds like so many of you are similar situations, how do you deal with the frustration of not being support by GPs etc.

Sounds typical from GP what are they offering for CFS? I thought most areas had a hub for long covid I’ve rarely heard anything for CFS. Or do they just give same nerve pain drugs. I’m not sure when if ever long covid becomes CFS but I would resist being labelled with that. Far more money and resources in long covid. It’s a “proper” diagnoses in itself it sounds like Gp doesn’t have a clue.

GP don’t hear what they are saying , so we know you in lots of pain and only one drug you can have but you can’t stay on for long. Bye bye! Then we wonder why we feel depressed and hopeless when we not managing well on the meds. You do learn struggle on (not that much choice)