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

@Akire I've been diagnosed with vertigo after having covid

I’ve had odd vertigo over years but nothing much can do but hope for the best. Least not feeling sick with it or yet feel like at sea laying flat. How long did yours last for?

Exactly, we need to plan things, even small like a coffee etc.

Gp should help with something if it's vertigo. Should ask for all bloods to be done while there, thyroid, ferritin etc. They often do fbc but not ask for ferritin, b12 etc. Im always low on b12 and ferritin but hb is ok

God vertigo is the worst. I have it a few times a year after a really bad bout of labyrinthitis that was so bad it damaged the nerves in my inner ear. Vestibular neuritis.

I constantly have moments where I'm feeling like I'm falling but I'm still sat at my desk.

Not sure if GP has mentioned it but have a look at vestibular recovery excercises. I don't take meds when it first kicks in but go straight to the exercise as I've learned I recover a lot quicker that way.

It's still ongoing @Akire since October. It's horrible

I look up exercises, NHS site says usually goes away on own. But says anti histamine can help so will get some next time I’m up. Only low level at moment and not like have walk anywhere so lest there is that

I'm sorry about your appt @SpookyScarySkeletons!
So frustrating

@Akire

It’s good have stuff to look forward too, I’m really struggling with this at moment. Life’s is just one groundhog dad after another. I should really make a bucket list for 2022

Getting really bad dizzy spells today. Had since covid but just odd spin if sat up to soon or moved head in night. But it’s every 20min or so. It’s not my iron that is amazingly doing well! No ear ache so much just be viral related or whatever. Fingers crossed nothing more serious

That sounds really unpleasant! Dizziness is a horrible feeling. I hope you wake up tmrw feeling better

Thanks @Akire and @RainbowZebraWarrior and @HerRoyalHappiness. Nice to meet you too, @wildthingsinthenight.

I'm torn on the call rota. And I might be well able after the procedure. Considering coming off it for a few weeks.

This thread moves so quickly! I'll try to catch up tomorrow once my baby is at the childminder's house.

Hope everyone is reasonably comfortable tonight.

THE Rheumatology doc says I have fibromyalgia. All the bloods show no inflammation. Referral for hydro and physiotherapy. Drugs.
I told him I'm 54, I don't want to feel this way for the rest of my life.
I'm glad o know what it us and starting treatment but today I feel so tired in so much pain but the rest of the world rolls on and I'm constantly playing catch up.
My immune system is deficient (ongoing problem) and he can't say for certain the 2 aren't linked.
Need to chase immunology now

@lolaflores My Rheumy also said probable fibromyalgia to me (on top of EDS) this was also because no inflammation (well ther4 was, but not 'suficiently')

I'm being referred back because my physio is adamant it is nerve pain / neuropathy. It does not always show up in bloods. I keep describing like a shockwave type pain from my toes to my hip. It's exhausting.

I think at least you take comfort in being listened to and referred for hydro etc. It kind of feels like a constant battle, but at least not dismissed to me IYSWIM. What drugs have they recommended if you want mind me asking?

I get what you're saying though. I'm 50, with a 10 year old DD. Single parent. Need to be able to function yet feel like I've fallen off cliff edge health wise. I'm also awaiting Immunology. My referral was poorly explained though so god knows how long that will take

Hope that made sense. I'm in shutdown mode at the minute so hard to explain self

RainbowZebrawarrior yes, it's all still muddy but yrs, I've been heard and looked at. This feels ikea nerve pain too but the wind is out of my sails and I just need a bit of recovery in any shape or form

I had my grand daughter for 2bdays (she's a year old my daughter is single and working full time and the child minder wouldnt take DGD as she had a cold and was worried aboutbCOVID) and its had a massive impact. I adore her and being so busy is so beneficial for me mentlayy but the pain today, bow that I don't have to keep going is simply evil. There has to be a balance
RainbowZebrawarrior you have my absolute admiration in your situation. I hope your circumstances improve at least.

Good about diagnoses @lolaflores all helps if you need stop working or claim more support. I suspect I’ve had it for years but doctors never want to do anything. My mum diagnoses with it 2 years ago also and things
like chest pain are similar.

Todays totally random pain is sharp repeating pain in my calf for no reason go me! In other exciting news man coming do new wheelchair assessment. Which usually doesn’t mean adding very much but least one step closer get rid broken chair.

Good news after much ado they agreed I need new wheelchair. 8 months after telling me I need a new chair but still progress!

Got new meds but again 30 days so that’s 3 current meds have to order every 25 days of course not the same 25 days. I know
They don’t like waste or you building stockpiles but it’s right pain in the butt. If your working and only pick up weekends you be at stuck. My local Boots know me by name and address

How is everyone doing today? Any exciting plans?

@Akire

Good news after much ado they agreed I need new wheelchair. 8 months after telling me I need a new chair but still progress!

Got new meds but again 30 days so that’s 3 current meds have to order every 25 days of course not the same 25 days. I know
They don’t like waste or you building stockpiles but it’s right pain in the butt. If your working and only pick up weekends you be at stuck. My local Boots know me by name and address

Have you looked into any of the prescription delivery companies? We have a local one and my GP sends script to them online and then they deliver to me. I'm sure there's some nationwide ones though.

Today I am mostly thinking about food and reading crime monthly magazine!

Also doing some online shopping for living room revamp and getting quotes for making the en suite more accessible for me. I mean I do love a bath and my bath lift is amazing but in summer I just want a shower!! And it's so bloody hard to get in and out even with DH support.

Lloyd's pharmacy do a delivery service @Akire
They deliver my meds for me.

Problem is since covid boots can’t reorder you have to ask every single time. Think GP thinks stops some waste don’t mind going out get it’s not far more anxiety going on website and keeping track
Of stuff.

Isn't it amazing just how .uch time this all takes up?
Making Doc and hospital appointments, sorting out meds and scripts.
Trips to and from pharmacy. Thursday and Friday I organised both my mornings getting up to the pharmacy to collect meds. Walking is a painful and exhausting so both the 40 min walks left me wiped out.
Then when I get physio appointments set up, thats more days consumed.
I feel so consumed by it sometimes. It's always with me. It impacts everyone and alters everything so much that I don't recognise my life anymore. I don't know who this is.

It is exhausting being in constant pain. Then like you said organising appointments and meds. It's all so draining.
The kids school is apparent a 15 minute walk away. It takes us almost an hour because of how often I have to stop and sit to rest.

HerRoyalHappiness thats tough, especially when it's so cold and windy.
I know I have to keep active and my natural inclination is to give the whole unpleasantness a wide berth but it must be done.
It's tedious. Draining. After a while I feel invisible to receptionists pharmacists doctors specialists. Just a merry go round

It is it’s like full time job with apologies those who still manage to also work! When people ask what do you do all day I want say feeling awful is a job in itself. It’s fills every hour and just laying there takes everything you got.

Pain just horrible this afternoon on extra strong painkillers even though on the ration just get through.

I take my hat off to anyone who can manage to carry on working while in such pain.
I miss working but I worked in a nursery ina baby room and I know I'm in no fit state anymore to do it.