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

Hi @sweetkitty sorry you didn’t get better news. Another long term pain for the collection eh.

I’m plodding along back still sore but not longer really stopping do the basics so we live in hope. Hard line keep moving but not over do it as usual the magic line!

Was hoping they announce covid jab could be done after 5m but saying radio that today might announce you can book it after 5months. But some people booking now have wait 3 weeks. Mine is due 8th Dec so could be having it after Xmas at this rate and plan stay family with lots kids (and germs) at Xmas. No the best given some say it stays reduce after 3-4m. You think with 2/5
Over 50s not going for it they be enough bring it down a few weeks.

Akire - thank you I’m sure I can book my 3rd covid jab now as it’s been 5 months since my last one, I’m taking my 3 teenage DDs for there’s at the drop in clinic this week and am hoping they’ll stab me at the same time. I got mine early as I work with CEV children. I’m so surprised I haven’t had it with half our school testing positive last week.

I’ve looked on NHS site it says not yet but it’s been exactly 152 days heard on radio for some people it’s 6m and 1 day before system lets you book. Still think it goes by area which has supply and jab resources. When I had flu jab text it did say it’s not time
Yet for boaster so least I’m on that list I suppose!

Hi all. Someone on here linked to the Neuropathy facebook support page. I joined a few weeks ago. There's a lovely lady on there who has said she was previously a PIP assessor or similar and is happy to help anyone. Just wanted to say thank you as I have telephone assessment on 23rd Nov.

I know we all have different issues. I had a girl half my age contact me the other day basically saying "how the hell are you getting all this help, when I can't?" I told her I understood, as I was nearly 50 when I got my EDS diagnosis.

Hugs to you all xx

@RainbowZebraWarrior

Hi all. Someone on here linked to the Neuropathy facebook support page. I joined a few weeks ago. There's a lovely lady on there who has said she was previously a PIP assessor or similar and is happy to help anyone. Just wanted to say thank you as I have telephone assessment on 23rd Nov.

I know we all have different issues. I had a girl half my age contact me the other day basically saying "how the hell are you getting all this help, when I can't?" I told her I understood, as I was nearly 50 when I got my EDS diagnosis.

Hugs to you all xx

Ah that was me ❤️❤️ so glad you found it useful!!

How's everyone doing? The rainy weather is playing havoc with my joints. I ache all over

Hey I’ve over done things trying sort out flat so back is complaining loudly. Really struggle with darker days as flat is dark best of times. Can’t even have lights on in day as flat over looked so neighbours can all see in.

I think I replied to you on your thread about joints (may not be you!)

@Akire could you get a sad lamp? It might help brighten things up a little and cheer you up on dark miserable days.

Hi all, and Happy Friday!

Sad lamp sounds like a good idea Witchyness

I need to ask a question. Does anyone here have MS? Or does anyone here have EDS or Fibromyalgia but think they may have MS? I've been wondering recently and I've just printed out the NHS symptoms and tick every box. I have to admit that I had a good cry, because I'm sick of not quite feeling right like all the dots just haven't been fully joined up and meds don't really work. I've put a call in to my Rheumatology Nursing team for them to call me back and discuss. I just get that constant feeling like they're going to think 'Oh, what the feck does she think is wrong with her now?'

Does this resonate with anyone?

@RainbowZebraWarrior

Hi all, and Happy Friday!

Sad lamp sounds like a good idea Witchyness

I need to ask a question. Does anyone here have MS? Or does anyone here have EDS or Fibromyalgia but think they may have MS? I've been wondering recently and I've just printed out the NHS symptoms and tick every box. I have to admit that I had a good cry, because I'm sick of not quite feeling right like all the dots just haven't been fully joined up and meds don't really work. I've put a call in to my Rheumatology Nursing team for them to call me back and discuss. I just get that constant feeling like they're going to think 'Oh, what the feck does she think is wrong with her now?'

Does this resonate with anyone?

Yes.. Me. I've been worsening every month for 2/3 years. Was told in Sept I definitely have fibro. Had all ticks in the questionnaire about symptoms. The only thing I don't have is tmj/jaw problems.

I think the symptoms for ms overlap. The rheum said to wait to see neuro. Had the mri head last week, was called Yesterday and given an appontment on Tuesday, saying to bring someone with me for support. Does not look good does it

Sad lamp is a good idea.
Hope you're getting enough vit d

Oh gosh @Daimyum huge hugs to you. To be honest, I think it's just really important to know what we are dealing with. to you. I'll be thinking about you on Tuesday. Please update if you can. It's important to have support

Thank you @RainbowZebraWarrior. I will. It's a contant battle with doctors, nevermind being ill. Had a meeting yesterday where It dawned on me that I will never work again. They're going to retire me at the ripe old age of 40. Isn't life just crap

Hello

I had an osteopath session yesterday and I've had the weirdest reaction yesterday and today. Can't stop shaking and could barely lift my arms. Felt like I'd run a marathon 😩

@Daimyum I'm sorry, that sounds like a lot to deal with. But we'll be here to support you as best we can.
@RainbowZebraWarrior I've never really looked into MS. I have EDS and fibro so it might be worth me looking into it.
@doadeer how strange. I hope you feel a bit better tomorrow.

Thank you x

Sorry hear your news @Daimyum o was suspected ME for years but only every had one inflammation brain area Ben though multiple systems affected. Though 3 my finger tips are numb as we speak! Good thing is that after so many years diagnoses mean “less” as so used having shot bodies. Still I hope they least can offer you meds if it is MS and things can improve

*MS not ME see fingers!

Head hurts, jaw hurts, shoulder hurts, back hurts, hips hurt, knees hurts think they are all competing tonight. I would say jaw is winning so miserable when you see lovely food like baguettes and you have to say no can’t have that.

Hope everyone else is having a calm gentle night

Not really calm and gentle feel like someone is beating soles of feet with nails. Sounds like you are winning on the multiple fronts. Anything good on Tv take your mind off?

Drowning sorrows/ trying to forget about being sick tonight with red wine and paolo nuttini.. And a hot tub.. Once in it.. So lovely. Old work mates/friends. Is a tonic..

Yes Akire, at least if MS can be treated yes
X

A hot tub sounds amazing is good to have good evening every now and again and forget everything.

Akire.. Yes.. Definitely. A holiday once every 2 yrs to forget about everyday life

I'm jealous of the hot tub @Daimyum DH has put ours away for the winter 😢

@Akirehave you had any nerve conduction tests done. That pain in your feet sounds very similar to what I get.

Hope all are having a relaxing Sunday. I am finally out the other side of covid! Also just realised I only have 6 weeks until Christmas so am frantically writing some lists and thinking about presents. DD(17) has only asked for 3 things. DD(12) has asked for two. I mean am I meant to be a mind reader or something??

Yes lots nerve tests the most I got back was yes some results are abnormal but no diagnoses that years ago mind. It’s not all time but this week fingers numb, stabbing in feet. Zapping nerve pain hip and back etc I suspect part of fibro but don’t have diagnoses that either.

I thought my Xmas was going well but like you say half way through November creeps up and then panic.

After funny migraine today no headache or visual problems just feel sick and keep having balance problems to one side which odd as I don’t even stand. At least so far peri menopause has t caused horrific migraines so greatful for that.