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

Fingers crossed Worrysaboutalot that your PCR test comes back negative

cricketmum84 Does Codeine help your nerve pain? I sympathise with your feet, I am having a burning, lightening strike day not fun.

Tomorrow will be a better day.

@Worrysaboutalot yes the anitryptaline totally knocks me out. I'm so ready for bed now and while I used to be up at 6am I am now groggy and tired until 10ish. I'm up to 30mg now but they do tell me it can take up to 6 weeks to see the effect of a dosage increase. Can I ask what has caused your nerve pain? X

Yes the codeine really helps. I only have the 15mg ones but i take 2 first thing when the pain is at it's worse and 2 on an evening.

The foot spa didn't help at all, in face it actually made the pain worse. It's a pricey nice one so I have given it to my sister as she is on her feet all day so will appreciate it!

Hello everyone. I'm on Imraldi and I am always so careful, but have somehow got a bloody virus giving me a really sore throat and I feel crap. LFT negative.

Hi @Mumba0111around you are very welcome the more the merrier.

Yes I’ve seen so many murders where know almost word for word but far less taxing than new or indeed silence.

I hope covid test are negative such constant worry isn’t it when you are vulnerable even if the world thinks no need shielding anymore. I’m not clinical vulnerable but any illness knocks me for months. I struggle get basics done now and even meals and drinks
Some days. People don’t realise if I get covid no ones going be mopping my brow or bringing me cups of tea in bed. And after decade of feeling crap I have no spare capacity to few extra rubbish even for one day never mind weeks or months.

@SpindleWorld

Hello everyone. I'm on Imraldi and I am always so careful, but have somehow got a bloody virus giving me a really sore throat and I feel crap. LFT negative.

There’s lots nasty virus around with sore throat think someone else on here had one this week. Have you got ice lollies and stuff?

Mumba0111 Hope you get help with your joint pain soon.

Re. TV. I watch musicals to help me relax, I love singing along, if my kids aren't around, lol

@SpindleWorld

Hello everyone. I'm on Imraldi and I am always so careful, but have somehow got a bloody virus giving me a really sore throat and I feel crap. LFT negative.

There is a really nasty virus going round. My eldest DD (17) has been so poorly this week. Hacking cough to the point it makes her sick, temp and headache. Done an LFT every day and all negative. She called college Monday and they said there are loads off with the same thing. I think it's a result of masks and not mixing for so long. Our immune systems have gone to shit!!

Tip if you are desperate few drops of tea tree oil in warm water and gargle. Find it helps numb the throat and is anti fungi. I get sore throat often as part of feeling awful just body way saying whohooo just remind you are feeling run down.

Have you done PCR test @cricketmum84 LTF are only for no symptoms. Though can sometimes show positive with it. No idea of the complicated science but NHS say no good if have symptoms.

No PCR no. She is loads better today so got her to do one more LFT. None of the rest of us are poorly. It's so hard to know what to do anymore!!

cricketmum84 I have a rare neurological condition called Dorsal Root Ganglionopathy which was triggered by an unknown autoimmune condition.

This caused my body to start attacking my own nerves in my arms and more in my legs.

My consultant put me on steroid infusions for 6 weeks and on tablets to make me immune supressed to stop the damage.

Could of happened to anyone, I guess.

Explained why I kept dropping things, falling over and down stairs. Sigh.

Do you mind me asking about your nerve pain?

@Worrysaboutalot

cricketmum84 I have a rare neurological condition called Dorsal Root Ganglionopathy which was triggered by an unknown autoimmune condition.

This caused my body to start attacking my own nerves in my arms and more in my legs.

My consultant put me on steroid infusions for 6 weeks and on tablets to make me immune supressed to stop the damage.

Could of happened to anyone, I guess.

Explained why I kept dropping things, falling over and down stairs. Sigh.

Do you mind me asking about your nerve pain?

I don't mind at all! So mine came on pretty much overnight. I couldn't move my feet or ankles at all and has tingling and pins and needles in my hands and fingers. Lots of tests and they thing I had a virus that attacked my nerves. I was also vegan at the time and had lost 12 stone and tbh my diet was very restrictive. My neurologist said it was a mix of that and diabetes that made the nerve damage so bad.

They are hopeful that I will get some movement back at some point but it's going to be a very long process as nerves don't heal very easily. Even if i do get some stability and movement back the pain will always be there.

That's the thing, @cricketing84, the Imraldi injections are biologic immune suppressants so I'm already CEV with a weak immune system. I'm so bloody careful with masks, distancing, sanitation.

And the cherry on the cake? A throat infection always exacerbates the condition I'm on the Imraldi for in the first place.

I guess I'll miss out today's injection and spend some fruitless days trying to get through to my GP about the prophylaxis antibiotic protocol that they'll claim they've never ever heard of.

Hi @Mumba0111around, I had an emergency sub total colectomy back in May, UC was totally uncontrolled so I know how you feel. Unfortunately, due to my EDS the sciatic nerve got damaged and I was left with ileal nerve damage too. Oh what fun!

Afternoon all, hope we all holding on to any sanity we have left! Not awful day but lots period pain but between legs rather than womb recorn another endo sign but it’s going be long battle. On plus side POP seems to be working as in much lighter so can’t have it all ways.

Was thinking about starting a Chronic pain and Christmas prep thread but I may be only deranged one! I get stressed every years as go away 3 weeks to stay family and sorting out meds and getting early feels like Military campaign. Never mind all masking around others and things we have to do make it bear able. Let me know if anyone else is interested and I start it.

Hope those with lurgy households feeling better x

Me and @OneNightTimeMenaceStrikesBack have been prepping for Christmas for ages. I have to prep early, get all the presents sorted. I hate trying to rush round in November

I remember last year trying to get necessary meds in early (well, in a timely fashion, in mid-December) prior to the great Xmas shut-down at my GP surgery, and how hard it was to organise.

Hello thought I'd drop in and join you. I'm sat in the sofa in so much pain. I've had my max doses today so far, just waiting till I can take more meds. I'm worried about the petrol queues, I have enough to last 5 days to and from work, but would really struggle to sit in the car and queue. I have an automatic but still all the moving from break to accelerator really hurts my hip. My job will expect me to use public transport if I have no petrol, but that means using a wheelchair which is really hard to get on a bus round here with. And then I don't have a wheelchair accessible desk, argh!!! I'm just worrying and stressing over it all.

Hi @nowwhat50 sorry about the bad pain day it totally sucks. Hopefully petrol will sort its out next few days. I agree about bus and wheelchair situation I did it for about 18m on off and be some so stressful I “walk” everywhere or I don’t go. Do you have anyone who could share lift with?

Oh goody lots of Xmas interests will start. I always have the need ask GP 3 weeks early and I swear you asking for crack cocaine. I even start trying work out how many days can miss so can save some days.

I don’t do shops in December with wheelchair it’s to much squeeze, but lots of things for stockings need get in person rather than bigger stuff online.

Xmas thread here

Thanks @Akire

Hoping my amitriptyline arrives this week. Why oh why are consultants still using snail mail?

You think huh straight email to GP pharmacy and buttons pressed and job done. Think NHS works in own time zone.

Having a sad night.

It's the birthday of my friend who was murdered at 16 tomorrow. I miss her terribly and this time of year is always a bit hard. I've just messaged her mum but what the fuck do you say?