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

How is everyone doing?

Battled with online forms get see doctor tomorrow still lots pelvic and bowel pain fed up being fobbed off. Most I got is ye could be endo now pulling bowel pain but with the bleeding and pelvic cramps not sure if related or just some piles or something! But apparently you can’t feel internal piles just pressure (which I don’t have) So hard on like the 6th time going have to say look I’ve no meds no plan action no test and no answers please bloody sort something. So goodness knows if actually do something this time can well before it takes 7y get diagnoses endo if takes this long get cogs moving even when alarm bells for serious things.

So pleased with myself as have more anxiety about doctors due past experience so even going online order meds etc feels an ordeal. But can’t keep laying awake all night and worrying so big girls pants on (or off if they do an exam!)

Why have they not done a camera up and down and laparoscopy... Would tell what's wrong then.. Annoying doctors yes

I know it’s so hard as you go there laying everything out and then no action. It’s quite had be forceful but they are supposed to be the experts and sort stuff if they think is problem.
I’m not sure if they had a memo which says don’t referral anyone unless severe pain or whatever as going be bloody ages wait anywa

Plus I think when you have Multiple conditions and disabilities everyone assumes someone else has over view of you and someone else will sort. When in reality nobody does anything.

How you feeling today? Any idea how long tests will be?

I had my appointment with my new neuro rehab physio this morning. Bleeding hell she broke me! I told her she was an evil sadist. Thankfully she knew I was joking. She's really forcing me to get leg strength back up to help with mobility. She made me do 5 squats (well my attempt at a squat) while holding onto a bed for support, walk up AND BACK DOWN steps, standing barefoot holding onto the bed again and standing on one leg at a time. My legs were shaking so much at the end of the session! Not sure I've fully recovered!

Was good to see how much I can manage if I'm really pushed though.

Akire.. Check yr 'pm'. No idea if worked, but hope I sent one.

Thanks for asking. He said would be asap, and being done in his neuro centre, not local hopital. Prob next couple weeks I hope.

He wasn't nice and was rude and dissmissive on 1st appointment, so he was kind of like tail between legs. Knows has done wrong. Was going to have a go. But lost my nerve and was kind of glad I was finally getting somewhere. I know there's something wrong, so not shocked or upset. Weird really, how we react.

When you have so many things wrong, get used to being sick yes

Sound like I could do with seeing your sadist physio.. 😂 Nothing like a bit of torture

Thanks v much for the PM

Glad he least had decency look sheepish neuros tend to think they are God I’d be happy if never see one again. Whatever they say don’t life your head for good few hours after lumber puncture. They made me
Get up go loo after mind no bed pan first time had be re admitted hospitals days later with head pain and pressure. Second time I took straws to keep drinking and insisted on bed pain and no horrific pain result! Not eveyone has side effects but best be prepared can happen and stick to guns.

Omg I know what you mean. Last time I had one was straight after a hip replacement. So not allowed to lie on side. Was done sitting up. You know the pain I had then yes. Worst headache and feeling ever. I think I actually went blind and fitted. Can't remember much.

I have a 1.5 hr journey there and back to have it done too, so not good. Will have to lie down in the back of car and have lots of caffeine, that's what they told me to do last time (no idea why, can't remember)

Really appreciate this thread support so lonely going brought all this. People don’t believe you when you say I’ve got all this going on and nobody done owt! seems to be well you lasted this long so can’t be very serious.

Least your legs dangle over back seat and windows will amuse other drivers

Yes.. Will be fun 🤣

Morning hope everyone plodding on

Finally got a referral to Gyn but who knows how long that Take. She offered me codeine or something with similar name with H in? She said wasn’t much in it so I said I’d stick with codeine as now I can tolerate that. Probable gave me 30 pills of 30mg so have ration them. She didn’t have clue what’s wrong and when I said endo she didn’t say oh yes classic symptoms so who knows as bloody usually. If it’s strange and baffling and bloody hurts it’s always seems fine me! Still it’s a start send pats on backs

Just checked my meds online and she not added it to repeats despite me saying several times I need something long term and it’s going be while before get referral. So if I only have one a day they run out week before Xmas I mean what can go wrong! Think he easier just get some street drugs

Popped my knee yesterday and its still hiding today. I blame the cold weather, its playing havoc with my joints.
The cold and the rain are a nightmare.

How's everyone getting on with Christmas shopping? I'm done now, unless my date goes well... then I'll have another gift to buy!

Oh dates! How exciting. Mostly done but need something for my mum. Small house so has be really really wants and needs or something can use out. Stumped really I’m sure get something. Been buying lots on Etsy but you have search if you don’t know what you need. My nice postman been doing asked me how I was I groaned back sure he’s under impression I’m suffering some deadly illness!

Ot is very exciting. I've never been on a real date before. And he's cute too
He doesn't care that I'm disabled and he works for UC so was on the phone last night making sure I am claiming everything I'm entitled to lol.

He phones every night and I'm so comfortable speaking to him. It's crazy, my autistic self hates phone calls but with him it just seems natural.

@HerRoyalWitchyness

Ot is very exciting. I've never been on a real date before. And he's cute too He doesn't care that I'm disabled and he works for UC so was on the phone last night making sure I am claiming everything I'm entitled to lol.

He phones every night and I'm so comfortable speaking to him. It's crazy, my autistic self hates phone calls but with him it just seems natural.

Eek I'm giddy for you!!!

That’s so romantic! Hope it all goes well

@HerRoyalWitchyness
That sounds lovely! I should get out there really. But have too much going on for another person to deal with. And been treated really badly in the past, so not sure I have it in me to go through it again. At least I don't need to shave my legs or buy a xmas present.

It sound like going well if taking an interest and keeping in touch often on the phone, hope the date goes well and he's just as nice in person

If like to as well but complicated when chronically sick. Least have days weeks months don’t do anything and no pressure and no one moaning to get up or push myself. It’s lonely though on top of pain lonely ness. Had shit afternoon been really upset about a situation. Had well over due cry x 20. Supposed good get out system now and again. Was up at 5 worried about doctors which certainly didn’t help.

You should get out there! You never know who you may find. I have so much wrong with me. (Arthritis, EDS, fibro, I hear voices and hallucinate, severe depression, anxiety, PTSD) but this guy isn't scared off by any of those things he accepts me as I am and understands that things are difficult for me

Yes.. Should really. I downloaded bumble yesterday morning actually. That's as far as I got though 🤣

I've set it to the friend zone thing, and not written anything about myself or paid. 1st step yes.

I thought, after lockdown there will be a lot of splits/divorces. So might be one or two decent men out there who had horrid wives. Plus be nice to speak to people as my friends have families and don't get the lonelyness of single parenthood and chronic illness.

I'm a single mum to horrid teenagers, so bringing another adult in seems unfair to them, esp due to the abuse we all had.

The ptsd/anxiety I had after the abuse, not sure if can do that again either, esp with having so many health problems.

We'll see, might bump into prince charming on the bus

Legs are killing me today!

Trying to decide if it's from evil physio session or sitting at my desk for 13 hours yesterday.

Just discovered this thread today.

I have had hideous back/sciatic pain for the past 3 months. Nights are the worst. Searing pain every time I move.

Seen a physio - no joy, seen a osteopath - no joy. Am now seeing a neurosurgeon on Tuesday.

Am currently on so many pain killers, and yet still not pain free. Codeine doesn't work for me either.

Anyway. Just wanted to say hello....

Hi @ndo4000 you are very welcome. Sounds a very tough 3months especially if you been relatively fit up to that point. A massive shock to the system. Have you had give up work as well? Few people here with back ache but can’t remember names but they will be along we still quite a small group.

Feel free post how you doing the highs and lows. Often just an achievement getting to the end of the day or just space to scream!