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

Hello all. Gosh, so much going on with everyone. I've made some notes for physio next week and for review by Rheumatology (in the pipeline)

So, so far I've got:
Meds not really working - pain clinic?
Hands sore and swollen / sensitive constantly - Peripheral neuropathy was ruled out by bloods only. CRP slightly elevated at 12. So what now? Other 'option' was fibro which Rheumy thought more likely.
Neck and back pain is one of my major issues. Query Ankylosing is which have family history of. Been asking this for months.
Itchy plaques. Off and on for 2 years now. Already diagnosed Osteo - Query Psoriatic arthritis?
I also noted that all of my symptoms were similar to MS. Of course that could just be similarities with my already diagnosed EDS.

I rather feel like I'm going mad reading that back. But it's so frustrating having so many issues (a lot which cross over and not all fit into one diagnosis) I've also started the ball rolling with regards to Autism assessment. My GP at this stage I think just has me down as a hypochondriac.

Another bad night last night, I have a painful varicose vein and some nights it really throbs to add to all the other aches. I’ve been told that the NHS don’t really do anything about them now, so like most things it’s probably not worth the effort of even bothering.

The three adult sons are departing tomorrow, I have been shopping for more food yesterday and today, it’s like trying to satisfy a plague of locusts ☹️ Hoping to get some rest in the next few days. Hope everyone else is holding up OK with the extra work and trying to be sociable.

Hi @Evenstar I have varicose veins and had them done privately via Benenden Health (can highly recommend) However, this was 20 yes ago and they are now back and very painful. Last I was told, NHS won't touch unless they are ulcerated. No doubt that's now exacerbated further by Covid and longer waiting lists. I've been told to use support stockings (the surgical type that you wear in hospital) I told my OT that I can't actually get them on due to pain in hands. What I do know is that if I'm wearing my comfy joggers, they throb like crazy. I have to wear Nike tight fit sports leggings which helps and are actually possible to get on.

Hope you get some rest following the departure of your sons. I only have one DD aged 10 at home, and feel exhausted even just having to see to her. She knows and understands when I'm 'out of spoons'

I get them well not properly yet but have days weeks when certain points on my legs throb constantly and have to ice and elevate as much as possible. I’ve got those socks you use for travel but after few hours they cut into legs. I’m only short so have to double over the tops and then huge bands. Can’t win.

Last day with 4 under 10 tomorrow then home for peace! Have eaten so much naughty things my gall bladder and stomach are really painful. Will have to get back on the wagon.

Thank you @RainbowZebraWarrior I might have to look into that, 20 years would take me to 77 so not so bad, sorry to hear that you have so many things going on at the moment. I think that is the same for most of us and really difficult to get seen and knock anything off the list.

@Akire you must be exhausted, hope you are able to rest up a bit at home. My brother rang this evening and is unexpectedly coming for New Year, but there will certainly be less catering with just three of us with normal appetites, his friend has had to cancel his New Year party as they have COVID. It will be lovely to catch up though as we don’t see each other often.

I've only gone and fallen and done my wrist in! Typical. Luckily I have fall alarms so mum was alerted and came down to help me get sorted and tidied up while she was here.

How is everyone feeling today?

I've just had a brutal physio session, really pushed to my limits. I'm definitely getting stronger though and my sadist Neuro rehab lady was full of praise! I've even managed to get down the stairs upright 3 times in the last 3 days!

Pain is still an issue, I wish I knew how to make it go away. The cocodamol is lessening it but it's still always there in the background laughing at me!

Also now have to go for another huge raft of blood tests. My last set last week have come back a bit funny apparently so they want to test me for auto immune disorder?

Last day here loads pain find it hard look after self with basics and meds so not surprised feeling run down. Leg playing up like bruise/bite but hurting for days. But not red like cellulitis. Goodness knows.

Well done on Physio, you are improving loads.

@RainbowZebraWarrior I wouldn't be happy with them ruling out neuropathy by bloods only! As you know I have motor and sensory neuropathy and that was only confirmed by nerve conduction studies. Nothing showed up on bloods (except my diabetes).

@Akire bless you I bet you are looking forward to getting home and back to your own bed!

@HerRoyalHappiness ouch! I hope the wrist heals quickly!

@SpookyScarySkeletons yeah, I've basically made a total nuisance of myself and rang Rheumy nurse twice to complain about this. And moaned to the physio, and the podiatrist and orthotics specialist. So the consultant has agreed I need a review. I am basically not going to leave her office until she sorts out further investigations. Spine is in bits, can't type as hands so sore. I'm not accepting "but bloods look ok" again.

Hugs all round. I feel on tenterhooks wondering what the new year will bring regarding restrictions / difficulties and possible cancelled appts and therapies. Some of the threads on the Coronavirus boards are fecking nuts. The 'I'm alright, I only had a sniffle for 2 days, just let it rip' folk. Heaven forbid some of them ever become disabled. Never mind poor people needing treatment and ambulances for heart attacks and strokes at the minute.

Good luck Rainbow! And yeah I agree, the attitudes of "it's just a sniffle, who cares" scare me too. Hoping now I've just had it I should have a bit of immunity for a while.
I have a family member here now caring for me, it's amazing how much more I can do and how much better I feel when I don't have to cook, clean, wash up etc.

Ahh @bicyclesaredeathtraps yes, hoping the virus has given you some natural immunity. Also pleased you have support. Huge hugs

Hello all,

I have been lying low for a while and not been on here for a bit.

I hope you all had a good Christmas?

Last time I posted I was having my epidural steroid injection for my herniated disc. Sadly it didn't even touch the sides and I'm still in a lot of pain. Thankfully my gp gave me some stronger meds to get me through Christmas but I am still struggling at night.

I have a consultants appointment next week for a 2nd opinion, but suspect he will suggest a microdiscectomy. That scares me sh*tless!!!!!

But given that last night I ended up on the floor with the dog as I was in so much pain, I've got to do something about it......

@ndo4000 I. Sorry the injection didn't work for you.
My back is killing. I just can't egt comfortable at night and it's really having an effect on me.

sorry to hear people are suffering im still wiped out from comign down with flu but getting a bit better every day

I’m home at last! Peace and quiet. Agree about some people think let rip, though happy the omicorn seems to be much les a awful then they thought. Got my jab on 4th on nice hospital apt on 8th so happy new year to me!

@HerRoyalHappiness night time is the worst, isn't it? It doesn't help that my 3 yr old likes to come into bed with us from about 1am and sticks to me like a limp it.

We are currently on holiday too, which is lovely but the mattress is soooooo soft so turning over is even harder.

Urgh.

Anyway, I hope everyone has a good NYE and manages to get some sleep!

@Akire pleased you are home safe and hope you manage to have a relaxing evening and that peace and quiet reigns.

@HerRoyalHappiness I've replied and quoted you on another thread. I just wanted to send love and warmth again to you. So much misunderstanding. And I probably get it wrong myself sometimes. I'm a single parent myself and I don't cope. I have a lot of help. Apparently that means I'm ok. My resolution for 2022 is to try and focus on myself. This is not a life we would ever wish for. But I am so grateful for the support and understanding of those here and in my other support networks. To be honest people who don't understand should just be ignored. But it's difficult (unless you shut yourself ina bunker, which exactly what we are trying to resist against)

All the best to you all.

@Ndo4000 I get the limpet thing too. Night time is the absolute worst. I have Amitriptyline but don't like taking it (plus, like everything else, it's not actually effective)

@BackinBits and @Iklboo hope you are both ok. Not heard from either of you in a while

@RainbowZebraWarrior I'm on a mix of gabapentin, codeine & naproxen. Not tried Amitriptyline....

My pain meds are reasonable during the day, (bar the constant diarrhoea they give me). I just don't know why they fail at night?

Am self medicating tonight with some Prosecco!

I’m self medicating with Buck’s Fizz too. Hope It’s good night if that’s sleep or party or just in bed with good film

@RainbowZebraWarrior thank you.
My resolution is to take time for me, to focus on myself for a change. I'm so busy constantly taking care of the kids I don't have time for me and I know that isn't sustainable. I need to take time for myself and to take care of myself. Its just hard when I have to be reminded about every little thing. I even have alarms set to remind me of meal times for the kids, when to take them to school when to pick them up etc.

Hi. Sorry for the radio silence. My dad died on 23 December so it's been difficult. Hope you're all ok.

Aw I’m so sorry @iklboo you must still be all up in the air. Hope you have support around you.