Chronic pain Cafe - support thread #3 All Welcome

[Akire]

New shiny thread to get us through December & Xmas and possible New Year!

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 with it. Everyone is very welcome

@SpookyScarySkeletons bless her.
I'm autistic too and my mum likes to tell the take of how one winter I sat in front of the fire to warm up then suddenly burst into tears. When my mum finally calmed me down enough to figure out what was wrong I said "I'm burning" she told me to move but I cried more because I didn't want to move because then I'd be cold!

@HerRoyalHappiness sounds like something I would do

Saw Rheumatology Consultant yesterday and based on his physical exam, he's in the middle between fibromyalgia and R.A.
Having bloods dine. See him in a week.
Funny how I feel a relief following the appt. Was a mixture of "I am believed. I am not making it all up. Someone cares" because so far, I don't feel heard by anyone. I feel so very alone with it and not sure how to explain it. Then I feel I'm letting everyone down by ot being physically fit enough to do normal things.
I've been helping with my DGD but I dread it be ause of the agony, ot discomfort, agony I experience afterwards but I don't feel able to say no.
And whatever the diagnosis, I don't k ow what the future holds for me physically.
Some a swers but in a way, more questions have arisen
Relief and concern too.

That’s really good news that he thinks it something nameable. So pleased it’s a step forward for you. Think we all can relate to the months years of going back and forth and everyone shrugs their shoulders. Would a named condition help you explain to family that look you really struggle with physical side of childcare?

Been really dizzy and faint today so along with the chest pain I thought oh I’m probably anaemia again. My body is so used to it that don’t get any warning signs until it’s like 4/5 then boom. Helps me feel better about the chest pain. Have to shave my legs and wash hair for tomorrow feels like very up hill task at the moment.

@lolaflores I'm glad you're on your way to something nameable.

Sorry you've been dizzy and faint @Akire, me too yesterday and a bit today. According to my latest bloods in my case it's not anaemia though.
I'm having a really rough time at the moment, not so much in terms of pain (although that's much as usual), but in terms of the whole being ill concept itself. I'm terrified that they'll never find any proper answers, and more terrified that if they do, it'll be something scary.

I scared myself after my bad jab reaction rather to soon after covid to be awake middle Of night on my own with sky high temp. Striping off window open etc etc I just felt over whelmed and that can’t keep having to do this sort of thing specially on my own. I know it’s tough luck and all but still. Feel like no resiliences left. If the bleeding issues do turn up to be something more serious I really don’t have it in me to fight anything. That worries me more than what it may be.

For me had give up finding answers to some issues I still have to live with it anyway and for mental health accepting your body is just rubbish is the way to go. Only so many times you can go with vague stuff and be told nothing wrong.

Akire that sounds so very frightening. I don't know what I can say to comfort you but I recognise the despair, the slump mentally at realising there maybe a whole new set of questions and not having the mental energy to start the process of looking for answers all over again.
I really hope you that the temp settled down and you got through the night ok or at least was able to rest. Was it a one off or has it gotten worse?

Had one last night, didn’t sleep well as hospital today. Which be bad enough if could walk but involves taxi ride which with wheelchair access is never a given. So could be there hour early in pouring rain or could be scrambling last minute to take Manuel
Chair in normal taxi if nothing shows up. It’s London taxi card so black taxi drivers have system but they are free to accept the job or not. Plenty times pre covid waited 4h for return journey because “none available” which find v hard Believe. Hope with crash in tourists that a driver will be grateful of job even if have to get out and pull down a ramp. Just could do without extra stress find hospitals extremely awful at bests of times.

Oh @Akire huge hugs lovely. You've had such a shit time. I also recognise that feeling if despair and being alone. I've had tears every day this week as to how much of a struggle it is. DD has metaphorically fallen off a cliff mental health wise, thankfully I've managed to find the energy to scream for help in between meltdowns. And I'll make sure we bloody get it too. Hope hospital is productive and as stress free as possible

@lolaflores pleased you seem to be getting a little bit closer to diagnosis. But I know everything still seems to end up with more questions. I have EDS, PoTS and osteoarthritis diagnosed. But there have been '???' about Fibromyalgia and Ankylosing spondylitis for ages too. I get frustrated because my brain works like 'just do the bloody tests = answer sorted' I know it's not as simple as that, I know it's often a process of elimination. And I know things are shit at the minute Pandemic wise so I cut some slack, but my GP is shit and likes to do one referral at a time. So I'll like wait another 5-10 years to get Cardiology, Neurology, Gastro, Dermatology, Immunology etc all sorted one by one. Average time for diagnosis of EDS is 10 years so I kind of used up all my patience already.

Well I made it. Taxi took 40min then got stuck at top of ramp had quickly transfer seat and then he pushed and I drove. He should used extension as to step and no tread on ramp and wet so where spinning. Could don’t without!

Quick exam by doctor he thinks is skin condition which I can’t spell yet. He said can affect the nerves. Why vulva pain. Though he wrote on pharmacy medication “vulva soreness” well being kicked 90min An hour between legs doesn’t really cover soreness.
Still have cream for 6 weeks then 6 weeks of and see him again. So let’s see if he’s right.

Not concerned about bleeding at all which strange guess have put up with it next 8-12 years???? Still have taxi home to deal with not sure my nerves can take it. It’s 4mile walk home which long and it’s freezing!

@Akire hope you got home okay, sending hugs.
Big hugs to you too @RainbowZebraWarrior, you're not alone bc we're all here suffering alongside....
Feeling very hopeless today as well, I took the decision to take a year out of my studies when I get back to the UK, which makes me feel like a failure even though logically I know it's the most sensible step. What with that and terrible nerve pain, sometimes I feel like there's no point even trying. I'll just rot away in bed, seeing as the doctors don't care.

Thanks just home now. He said it was Lichen sclerosus which heard about skin condition of vulva. Had suspect many years might had as slight colour changes BUT never caused pain or soreness or an itch. So now I’m thinking he didn’t understand issue even though and typed them out clearly.
I’ve no doubt I do have it but it’s not causing any problems it’s supposed to. The pain I have is very different.

Also annoyed I had extremely heavy flooding periods from my first one plus problems bladder and bowel pain for 12-18m totally ignored that no mention about endometriosis. Plus the stabbing sharp knives pain before period on other thread said sounded very much like adenomyosis again ignored that. So not sure how I feel. Have go back in 3m try this cream see it makes a difference. But looks like I’m still bleeding everyday till I final finish menapause so what 6-8-10 years as it’s “not a problem”.
Sorry for all personal details never said Vulva so many times in one day in my life!

Sorry hear about putting studies on hold. When does the next year start September?

Hugs all round.

On a happier note, I've just had a bubble bath via my new bath lift. Aided by my lovely 10 year old DD Thanks @SpookyScarySkeletons for the life changing recommendation

Oh wow so jealous!

@RainbowZebraWarrior

Hugs all round.

On a happier note, I've just had a bubble bath via my new bath lift. Aided by my lovely 10 year old DD Thanks @SpookyScarySkeletons for the life changing recommendation

It's amazing isn't it 🥰🥰🥰 can't even explain the difference it's made to my life!

Many many happy baths ahead for us both ❤️

Good morning everyone. How are we feeling today?
Today even my fingertips hurt.

Hi Royal really out breath here even laying down. Hospital yesterday on very polluted roads so guessing didn’t help. Pain not so bad though, flat is tip…. Christmas is still up! Not sure how much can get done so out breath but hoping can do a few things.

How’s day looking for you?

@HerRoyalHappiness

Good morning everyone. How are we feeling today? Today even my fingertips hurt.

Bored and lonely. DH gone to work without setting my bath lift up so I'm in a sulk cos I can't do it alone.

All kids (including eldest's GF still in bed). Suppose I could just enjoy the peace and quiet and read a book but my new box of books have been rather unhelpfully put at the back of the garage which I can't get to so just browsing MN instead.

Pain was bad earlier but 2 cocodamol are taking the edge off.

When is it acceptable to pour a G&T on a Sunday??

@Akire Christmas still up here too! Driving me mad cos it should have been down 3 days ago. However DH doesn't have a day off until Friday and I need him to get the boxes back out the loft and help me un-decorate!

@Akire don't worry about Christmas being up or the flat, just rest.
@SpookyScarySkeletons browsing MN is a good use of your time

How much setting up do bath seats need? Not good to have disappointment first thing on Sunday. I struggle with weekends radio shows and TV don’t appeal always feels very very long days.

Apparently some people leave decorations up till Candlemas which is the 2nd Feb, so that's what I'm aiming for! Maybe put away one thing a day.

@Akire

How much setting up do bath seats need? Not good to have disappointment first thing on Sunday. I struggle with weekends radio shows and TV don’t appeal always feels very very long days.

For an able bodied person it's pretty easy, just need to lift it from bedroom to bathroom and then fix to bottom of bath with suckers. But I can't lift it and walk at the same time and not enough strength to be able to then lift into the bath and lean over to fix it in place.

Ooh exciting news! Tomorrow I am having my first proper haircut in about 4 years! Absolutely no idea what I'm having done as all my old styles probs wouldn't suit as my hair has thinned out so much with being ill. Lovely mobile hairdresser is going to give me some options once she has looked at it.