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

I wish we could see the drugs v disease chart. It seems very much that you can be in unbearable pain but unless it’s not for “good enough” reason tough luck. Whereas unbearable pain for other illness gets them breaking out hard stuff. Surely if it’s unbearable it’s unbearable.

How is everyone today? I have lost the plot and put up my Xmas tree! Never do in November but thought Sod it I need cheering up. It’s only little and sits on table so not like takes hours to do. Have I won tree up first competition?

Haha @Akire you have beaten me! Mine is going up on Sunday. Although my DSis has had hers up since September!!

Managed to wash my hair over the bath with the help of DD(17). God knows how I would have managed alone, my sciatica felt like it was about to tear my body in half.

September blimey that is mad unusual
Wrapped more gifts mostly done the to others from others. I do become the family PA because I have so much time on my hands.

Well done on hair wash, do you sit or bend on the floor? When backs been bad I’ve used kitchen sink as it’s much higher up and if sit on chair right height can get someone to do it forwards or backwards with less bending than bath.

Evening everyone. So I had my MRI yesterday which was ok. Also got the consultants initial thoughts through and he thinks it's a prolapsed S1 disc. I've got a follow up appointment on Tuesday.

I feel like shit today though. Feels so painful. Had to get through work (where I fell asleep again) and then looking after the kids. Just managed to have a bath which helps a bit.

Sorry - very negative after your jolly Christmas posts! Just needed a rant and having a little cry here. Ah well. Tomorrow is another day, eh?

@ndo4000 rant away, it sounds utterly miserable for you.

My Christmas tree won't go up until the first weekend in December, so the 4th this year.

Did they say what’s plan of action if it is the disk? Fingers crossed it’s positive for you.

This is place you can be negative and say how it is don’t worry. I haven’t cried today which is improvement for me

Thank you....

They said I have 3 choices depending on the outcome of the scan:

1. Continue with meds
2. Epidural injection
3. Surgery

None of those really appeal...

Few people here with more experiences about backs I’m sure they be able offer more support.

Hello all. Good news here. I had my racz procedure and they found the source of the major ouch, and gave me 2 facet joint injections while they were at it. I feel amazing and will do until the local anaesthetic wears off. (Hopefully steroids kick in soon). I strode out of the hospital. I haven't managed to stride in over a year!

@Akire on the drugs vs disease thing, I've had some generosity. I'm fascinated by the concept. I think my luck is because I have a disc in contact with a nerve, bony inflammation and deformed hips.

I would read phds on pain patients if I had energy! I think many of us it isn’t the one major awful pain like you with your back it’s 3-4-5-6 smaller things that combine together. Hardly anyone treats you as whole person not just 1 illness which you “should be able manage”.

So glad that the procedure worked don’t go overboard and clean house top to bottom though your muscles will be in shock

@Akire

September blimey that is mad unusual Wrapped more gifts mostly done the to others from others. I do become the family PA because I have so much time on my hands.

Well done on hair wash, do you sit or bend on the floor? When backs been bad I’ve used kitchen sink as it’s much higher up and if sit on chair right height can get someone to do it forwards or backwards with less bending than bath.

I kneeled over the bath but by the time I had done the first shampoo my bum, lower back and thighs were shaking like crazy and the pain was so bloody intense. I called for J and she came and helped me so I could put my weight on the side of the bath while she did the actual washing.

Hair feels lovely and soft though so I think it was almost worth it.

@ndo4000

Evening everyone. So I had my MRI yesterday which was ok. Also got the consultants initial thoughts through and he thinks it's a prolapsed S1 disc. I've got a follow up appointment on Tuesday.

I feel like shit today though. Feels so painful. Had to get through work (where I fell asleep again) and then looking after the kids. Just managed to have a bath which helps a bit.

Sorry - very negative after your jolly Christmas posts! Just needed a rant and having a little cry here. Ah well. Tomorrow is another day, eh?

Sending hugs

@Akire I've a good few other things too, but they don't compare to the back right now. (Frequent nerve entrapments, trapezius spasm, pes planus with pedal arthritis). Mainly complications of type 3 EDS (before they called it hEDS).

I do know I've been very lucky, though. Everything I have can be seen on imaging. It doesn't make my pain more real, but it certainly does mean doctors are willing to help.

It would be great have pain scanner so someone could see it. Maybe in 100 years. eh. Think most of us have been to doctor or hospital in the last week thank goodness for the NHS

I'm in Ireland and our HSE is far, far from good so I had to go private, but I have decent parking insurance and I'm very grateful for the care I've received.

@Akire

It would be great have pain scanner so someone could see it. Maybe in 100 years. eh. Think most of us have been to doctor or hospital in the last week thank goodness for the NHS

Pain scanner would be some breakthrough!

A pain scanner would be amazing!

Everything hurts right now. Even my fingers. My own fault as I've been wrapping Christmas presents. All DS2s are wrapped and most of DDs. I've wrapped my brothers birthday present too. Now I'm out of wrapping paper and in too much pain to continue anyway

@BackInBits

I'm in Ireland and our HSE is far, far from good so I had to go private, but I have decent parking insurance and I'm very grateful for the care I've received.

Don’t know much about that glad you had provision pay though. I know quite few people down that here because lists are so long.

Well done on wrapping, I noticed Wilko hardly had any paper or bags in but still have lots signs saying there are delays with some lines. Suppose they all be dead cheap after Xmas when they actually arrive. But not yet December still time

Good luck sleeping everyone and those up in the night. See you for Friday

Just saw I somehow typed parking insurance. I'm going to blame autocorrect and sedation. 😂

How is everyone today?

Not to bad here managed get few jobs done and wrapped some Xmas presents. Freezing out mind only find my fingerless gloves as is the law. Two hang around all year until
It’s cold and boom one emigrates.

How’s your day going? Are injections still doing their job?

Gosh it is so cold! I'm looking forward to the predicted heavy snow tonight though. I don't have to go anywhere or walk in it 😂 and there is just something so magical about waking up and seeing that glow through the window and knowing it's snowed overnight! I'm such a child at heart.

Pain not too bad today. Brain fog still continuing and it's payday so I'm getting lots of emails and phone calls so bouncing from one task to the next. I now having auditory hallucinations of my work phone ringing!

Ahhh nearly the weekend!

Not too cold here in the very south of Ireland yet, but I think it's coming.

@Akire and @SpookyScarySkeletons glad you're not in too much pain today.

I'm feeling good. They must have divided some adhesions because the local anaesthetic will be gone and it's too early for the steroids. And my elbow is at me again which is a good sign of sorts