Chronic pain Pub Corner - support thread#4 All Welcome

[Akire]

Welcome to our new shiny thread for February. The lattes and expressos were not quite hitting the mark so we have moved to the pub. Whether you need Diet Coke or stiff drink help yourself we have a tab going and hunky staff are very attentive.

Oh no ☹️ I'm sorry. Do you see the same doctor or is it different people?

Thats awful @Akire I hate that we feel we are taking up too much time when speaking to doctors and what not.

That’s first time I saw the consultant. GP is always new people all the time. Think
If start nerve pain meds now by time
Kick in be time come Off to See if his treatment has worked.

I need make sure I have list next time but you sort assume when you are going about chronic pain they want check how you will manage going forward. But no up and out the door.

I'm so frustrated for you. Hope the nerve meds help - have you taken some already?

I'm reading Dr John Serano the Divided Mind - has anyone read his stuff? I'm trying to understand more about chronic pain and why it affects so many people without cure. It's a huge topic and so much to get my head around.

Am I allowed a whinge? It all hurts and I can’t do things I want to do. I desperately need to lose weight to help my arthritis, but I’m stuck on steroids. It would help if I could prep meals but some days it’s all I can do to get as far as the kitchen, so it’s eat a bag of crisps, a sandwich and an ice cream on the sofa, rinse and repeat at tea time and throw in biscuits coz it all hurts!
In the meantime I should be ringing the Doctors and saying help, but am concerned they will just say it’s a weight issue ( it’s arthritis, EDS, and nerve damage from last years stoma operation. Oh what fun.
I have increased my amitriptyline to three at night but I think that’ll take a while. I am feeling both sorry with myself and annoyed with myself!
There, said it. Thank you!

Just sticking my head round the door. I posted on the last thread around Christmas. Can I bring my flask of tea in? Can't drink more than a sip of alcohol due to meds cocktail and it's cold! Do you all really mix alcohol with meds? (Not disapproving... I really wish I could, but I feel like I've got a hangover after half an hour, even if I only have half a glass!)

Have hip, back and ankle problems due to accidents/mechanical problems. Had a disappointing appointment with my hip specialist recently - actually two disappointing appointments, because at the first one I was only there long enough for him to say I needed an MRI. Not a surprise 🙄

So I had the MRI, which was a complete nightmare - she wouldn't let me bring anything in with me to make myself more comfortable, so my back went into a huge spasm half way through. I got through it by trying to remember all the verses to Christmas carols! At the end I couldn't walk because my back was locked - I had to have a big swig of Oxynorm and wait for it to work before I could get dressed. They didn't care, they just wanted me out 😡

ANYWAY the MRI says nothing new, I still have insertional tendinitis at the top of my leg/edge of my bum from an accident 6.5 years ago. For some reason it just hasn't healed. Apparently Dr Hip has 8000 patients on his books and about 20 like me. So it's rare but not vanishingly rare. But there is no answer... PRP works for some people but it didn't work for me so not worth repeating. He's tried surgery (not on me) but it doesn't work. So there is no active treatment, just pain meds, pain clinic and physio, which hasn't made me better yet so why would it start now? Don't get me wrong, my physio is great, it's just pretty much untreatable. I'm a bit despondent about this as I can't sit for more than 20 minutes and I'm really feeling it this week as I've been in the car every day for 5 days.

@RainbowZebraWarrior you are so right about the body in chronic pain holding onto the weight. This is my problem - i put on weight because my life became much less active, because of pain/mobility. I really wish that doctors with CP patients could be a bit more holistic. And @Gilead yes, same thing... I always worry when I see a new doctor that they are going to launch into a weight-loss lecture - if only it was that simple!

Sorry that was a bit of a rant too

@Gilead @AllLopsided

@AllLopsided don't worry, rant away. You wouldn't be human if you didn't get frustrated occasionally ❤️

And that applies to @Gilead too ❤️

💐💐💐
Thank you!
I don’t drink either, same as you, I just can’t, I doze off.
I’m going to try and be brave next week and get to the doctor and harass them for a rheumatologist appointment. I had x rays last November and they said they could see the damage clearly, upped the upped the amitriptyline and have left me to it.
I have a wet room and my stair lift is going in next week, other than that I have absolutely no help and everything is a major chore. It took me almost half an hour to change bed sheets tonight!

Morning xx
@AllLopsided and @Gilead
Friday at last.
As someone upthread said, Friday is still a relief somehow even if you aren't working. For me it signals 2 days where I don't have to set my alarm for 6.30 to get DS to school.
My go to to cheer me up is books. Buying and reading. I have waaaay too many.
About 850 in the house

And food treats..

I hope we all have a decent Friday❤

We have plans for a takeaway later so no cooking🙌

Morning all and Happy Friday!

Gentle hugs and all round. I'm having my best drink of the day a good old cuppa. I can only stomach so much tea (even decaf) but that morning is somewhat strength giving

I'm just getting ready to take DD to school, but I'll be back later for chat and support about pain, EDS and related conditions and weight (just sharing thoughts, no magic solutions)

@RainbowZebraWarrior

Morning all and Happy Friday!

Gentle hugs and all round. I'm having my best drink of the day a good old cuppa. I can only stomach so much tea (even decaf) but that morning is somewhat strength giving

Agree about the cuppa! I always have a sugar in my first one of the day too. Rock n roll😊

Happy Friday all, meeting friend for coffee but it’s pouring down so that be fun! Didn’t sleep to badly so grateful for small mercies and all that.

@HerRoyalHappiness

Thats awful *@Akire* I hate that we feel we are taking up too much time when speaking to doctors and what not.

Anyone else start to worry that they look like a hypochondriac and not want to tell the doctor when another new symptom comes up?

On that note, off to the dermatologist today in the vague hope they will be able to tell me why my nails are suddenly deforming and/or cracking down the middle.

Hope everyone has a fantastic Friday. ❤️

On the subject of feeling like a hypochondriac (or rather wondering if your medical practitioner thinks that about you)
Yes, it's common actually for people with the likes of EDS and Fibromyalgia to be seen initially as possible hypochondriacs and even Munchausens syndrome. On the EDS GP toolkit, it asks doctors to perhaps consider EDS if they have previously questioned hypochondria. This is due to the fact there are usually dozens of separate symptoms. It's not until someone (usually the patient) starts to joint the dots and realise all the symptoms are linked. This often takes years. And this is why we are all shattered as we deal with the pain daily, yet have to find the strength to fight to be heard too.

I adopted this phrase a while ago. And I trot it out at all appointments

Awareness is great Belief is better and support requires both

Lastly, a note about my user name. I will attach an explanation about 'medical zebras' And why we are often initially overlooked. Some of you may be familiar with the term already.

Explanation of medical zebras lifted from EDS Support UK

Never heard term Zebras but yes makes sense and your name!

I definitely think part of burden of chronic
Pain is getting people to listen and join the dots. We know stuff is wrong but not often easy one fix wonder diagnoses. Then one part goes wonky you end up using your body slightly off way and then other parts start over compensating etc.

It never goes like, Hello patient I see you live with chronic pain and multiply conditions how can we help Make Things as easier as possible? Instead it’s Oh patient is on long term meds seeking more painkillers better do a meds review and take them off them. They have X condition odds are can’t have any more here have some anti depressants. They can’t be in as much pain as they say that would be intolerable they look fine to me!

You're right @Akire

I'm sure I read the NICE guidelines were updated to say that GPs need to get undiagnosed patients off meds and onto AD's. There is some wording there however not to take people diagnosed with chronic health conditions off pain meds. I'll try and find it...

Also, the route for Pain Management clinic should be

1. Ask GP to be referred to local clinic
2. If they refuse, speak to Practice Manager

I think the first time I asked, I was told they didn't think there was one. So I had to come home and do some digging and sure enough there is an NHS Pain Clinic in my city.

Moral of the story is I now do as much research as possible before I walk in the door (not that I see General Practitioners much, but same goes for specialists)

I've had a really shit fee weeks, but managed to find some strength and pull myself out of my shutdown. One thing I could highly recommend to others is self referral to NHS Talking Therapies. I rang up, explained that I was in so much pain I was finding day to day emotional and practical problems impossible. They assessed me 2 weeks later. I was firm with them that i didn't need CBT and that i actually needed counselling. They have now put me on the waiting list for counselling. Should have 1st appt in 8 weeks.

Sorry if I'm teaching anyone to suck eggs, just trying to share what's helped me in the last month or two when I've been at breaking point.

@Gilead as a fellow EDS sufferer, can I aso what meds you are on in daytime. I take 20mg Amitriptyline at night. It sort of takes edge off and helps me sleep a bit, but I know you can take up to 100mg. I take paracetamol and codeine daily (my Rheumy allows me to take 60mg x 4 if needed. (My usual is around 120 - 180)

I also have Zacin cream. It's not a miracle worker, but a welcome distraction for 20 mins or so on any really painful joints (it's basically creak made from chillies)

I've been offered a lot of other stuff but lost either contraindicated with either BP or asthma meds or doesn't bloody work

Literally feel your pain

Regarding diet, it's bloody difficult. As I've said before and others agree, the body hangs on to all resources when in chronic pain. It's also somewhat further compounded when we may have allergies and intolerances. My Rheumatologist has stuck 'Obesity' on my list of diagnoses, so I'm feeling compelled to try and do something about the weight. I'm working on some ideas which might work for myself. Maybe we can try and support each other via this thread?

Anyway, just some ramblings from me.

Counselling is a really good call, like
You I’m not sure how much CBT would help. That’s why I’ve so far avoided pain clinic as heard horror stories about it just being your thinking. And at the end if you are still in pain you not tried hard enough.

For me I have average discomfort days it’s never good. But then I have awful days on top. It’s the not being able see when next average day is. Sometimes you get one bad day or it’s 20 that’s the hard mental part for me no rhyme or reason. So hard feel in control or plan or know when next day off (not really off just more manageable day would be)

God so many typos in my last post, sorry

@RainbowZebraWarrior, thank you, sounds good to me.
I’m on pred, working down to 5mg where I stay permanently. Also take Tramadol, Paracetamol, Oramorph and if I’ve got something extra to do then I’ll pinch one of Dfs Naproxen. I have to be careful though-as I’ve no bowel, EDS and gut problems are common as I’m sure you’re aware.