CHRONIC PAIN - share your moans and achievements

[doadeer]

Hello,

This thread is to share the day to day... The moans, rants, fears, anger of day to day living with pain... And let's be positive where we can too... Little or big achievements.

I've had a tough day with my grumpy toddler who is obsessed with biting, he made my shoulder bleed today 😢

On the plus side, had a great pilates class and managed some tricky stuff despite feeling exhausted... I couldn't have done it unless my teacher was on Zoom telling me to hold it!

Thanks for the thread! I walked to the post box today, barely 50yds away but I did it!

Went to the hospital a few days ago for something unrelated to my arthritis. My arthritis is mentioned and the fact it's osteoarthritis - 'that's practically impossible, you're early 20s' 🙄

I mainly take codeine for period pain so only few days a month. The side effects are half as bad as the pain so can’t see myself getting hooked anytime soon. If I’m going feel like I have major hangover I might as well least get the benefit of drinking first. I had a family member be addicted because migraines so I know dangerous well but lots other meds affect my asthma quite badly.

I used take tramodol for general pain but made me throw up for the first hour just to get had drunk and sleepy and still be in pain.

Last year I went to GP because had hip and finger pain thought joint related. She looked at me and told me dead straight faced “you don’t get arthritis in your hands...” I think you really can!

I feel and look like I'm pregnant, can feel it if I lie on that side.

Well done @fairydustandpixies on your walk.

I don't find any odd side effects if I take codeine for a few days.

@PainAgain ohhh I'm supposed to be exploring that but haven't found anyone yet? Has it caused pain? Or do you feel ok?

@cansu are you sure it's the amitriptyline making you sick and not the naproxen? The only other similar one I've been given was nortriptyline.

Thanks Akire

Acupuncture also occurred to me...seems less dangerous.

@Akire

That sounds awful I’m sorry. When it’s a long term condition and you know what works or Not it’s so hard not to be listened to. Then have the physio not listen or to presume without meeting you that they know what’s better for you.

I understand about codeine and long term use but either it’s something you need to reduce or not. She can’t say it’s fine to keep using as long as you do this bribe and try physio.

Thank you, that's exactly what he done. Quick read through my notes and decided I'm a nut job who's been imagining this pain for all this time and if he just tells me that - poof! I'll be fixed. I totally understand the GP's concerns around the codeine. I'm prescribed 2x 30mg 4 times a day and there's times in my life I've taken the full dose daily for long periods but that doesn't agree with me. I now take, and have done for around 5 years, one dose on a morning and that's it. GP knows this as she can calculate how long my prescription lasts me. She will offer to switch me to tramadol! and regularly offers me the anti inflam big guns. I can not take none of them as it knocks me sick with awful side effects and I have to be on and stay on the ball for work. Codeine isn't ideal but it does me and helps. I'm also prescribed liquid morphine maybe once every 1/2 years for really bad periods so it's laughable that she's holding the codeine ransom.

30mg a day is nothing but does make you feel like every trip to the doctors is like you are a puppy at a circus. Be prepared to obey what anyone says even if it’s different every time you go.

[quote doadeer]@Fuckityfucksake
I empathise with this so so much. My issue is pregnancy related, horrendous pain for so many monthly, NHS did MRI it was analysed by a physio who asked me to back bend when I said it was immensely painful, he was pushing me to bend and said it was all psychological. My MRI was fine and just keep exercising. He couldn't believe any of my pain was caused by pregnancy and he was so patronising, asking me how I know what "pelvis in neutral" meant. My family own a yoga studio and I talk about anatomy every day, I've done yoga and pilates for years! Prick.

I had a private MRI and they found loads of damage on my facet joints that I've now had 2 and another one next week, quite invasive procedures.

I do think they have a real blind spot when it comes to pregnancy and birth - as if because it's so "natural" it's not a huge trauma on our bodies. Bullshit. How can they leave you for 25 years in pain, it's barbaric. [/quote]
It's so crap isn't it.
Like you, when I spoke about something I'm well educated on, because I live it and have researched myself - in my case my sciatic nerve swelling up like my little finger - he totally shot me down and quite abruptly told me that couldn't happen. It can and does happen to ME regardless of what he's been trained to know or if he's never seen it before I can assure him it absolutely does that.

He clearly didn't read the part of my notes that would tell him I have a consultant that I see every few years.
There's no point any more often because there's literally nothing medical they can do. Also that I have actual physical damage in both of the sites the epidural was placed and this info will be there in the form of mri results if he bothered to check. My consultant said although they would not operate on me at this point because I'm very mobile and the op is risky - which is also a bit of a slap in the face as I force myself to be sodding mobile! but I will possibly need what he calls some scaffolding done at a later point because it is and will continue to degenerate.
I've just mentioned in a reply above - it's as if he had this revelation where if he told me it was in my head then like magic I'd be cured.
I'm glad you got some answers but you shouldn't have needed to go private to get them. Yes also to pregnancy and births being shit on! it's true and we are just expected to sail through it and come out after like it was nothing. I won't mention when I discussed diastasis recti with this same physio, apart from to say it's actually quite embarrassing that they know little about it nor it's effects on women's bodies so something else that wasn't taken seriously.
I hope your upcoming procedure goes well and helps you feel better.

@Akire

30mg a day is nothing but does make you feel like every trip to the doctors is like you are a puppy at a circus. Be prepared to obey what anyone says even if it’s different every time you go.

If the GP comes back and says she isn't prescribing me it anymore so be it. I'm done with it. I won't beg she can keep the codeine. I will however, go to A&E if in extreme pain. It doesn't happen often luckily.

I'm also prescribed liquid morphine maybe once every 1/2 years for really bad periods so it's laughable that she's holding the codeine ransom.
I read that back and feel i need to clarify....
I get liquid morphine for really bad periods of pain and not my monthly periods :)

I'm just placemarkijg so I remember to come back and post tomorrow. I'll forget.

Smellyolddog definitely amitryptaline. I have been taking the naproxen fine with the stuff to protect stomach. It was only when I added amitryptaline that the throwing up started. I will look into gabapentin.

I have Botox for tmd. It’s a godsend. Haven’t been able to get a top up for over a year since the pandemic but would usually go every 6-9 months. The difference in my face shape is astonishing

@dane8

Cansu Noratriptyline (sp) Pregablin Gabapentin

Was about to suggest these. DD was prescribed all these in turn for her pain. She also had a short time on an antipsychotic drug under the supervision of a pain doc from Kings London. Nothing works. The only time she got any relief was when she happened to also have cancer and had a port for her drugs and when she had the port inserted she was given IV paracetamol though it for the wound pain. But it made her delusional. Pain free, though! She can't tolerate oral morphine or in fact most meds orally. But every body is different and it's worth trying different drugs.

Thank you for the thread I feel a bit of a fraud because apart from dodgy hip, shoulder and elbow oh and fingers I'm pretty much just looking after my DD who is in constant unmanaged pain. She doesn't scream anymore thank god because she's too exhausted. I feel my win yesterday was persuading a very very exhausted DD that is was okay not to have a teeth cleaned at bedtime because she was too tired to open her mouth. It's incredibly hard at the moment and I really really miss our nurse who isn't allowed to visit. She couldn't do anything but was kind to DD and to me, she sends photos of her kitten and tells DD silly stories about her childhood growing up in South Africa, I miss kindness. And I am just so tired

@cerseii

I have Botox for tmd. It’s a godsend. Haven’t been able to get a top up for over a year since the pandemic but would usually go every 6-9 months. The difference in my face shape is astonishing

Oh thanks! So does your jaw not hurt? Did you wear a mouthguard, does it spare you that? If I still have to wear a guard at night, I'm not sure if it's worth it.

Also stupid question, do they have to do both sides?

@Sooverthemill it’s ok to share your daughters small achievements, wins are wins.

I had bad night but reporting for duty on (checks day) Thursday!

No achievements yet today unless you count waking up at 6 with the youngest 😴

My moan is that my pip renewal form arrived and I only have two weeks to get it sent back. Freaking out. 😭 I am terrible with forms. Never done a renewal form before either, the first time I was very ill I had DLA and then didn’t bother renewing it as I thought I was doing better

Oh no sing. There is never a good time to get a DWP form. Will you be able to do it in two weeks? Or is it they have to get it back by a date in 14days time? You used to be able to get an extension if you needed, especially if it’s not enough time to get evidence you need. Given with covid things take longer may be worth a try.

I always apply as if the person reading is doing for first time. Though can’t remember the renewal looking any different for normal form. Please start a new thread if you want more specific support or advice.

@LunaHeather no pain, your jaw becomes completely numb.

I still wore my mouth guard as it gradually kicks in (7-10 days) and gradually fades away (3-6 months), but you can stop. To be vigilant, start wearing it again once you feel the Botox wear off so your habit of grinding/clenching doesn't return? Mine always does

Yes they do, but over time they might administer different amounts in each side if eg your left is more enlarged

I don’t know really akire I’m just in a bit of a shutdown about it now. It doesn’t look as bad as the initial one but it’s all the worries about inconsistencies between this and the original form, the fact I now have ADHD diagnosed too which could work for or against me. My physical conditions are so very variable and my memory is shit so it’s hard to be consistent. Anyway I’m ignoring it for today (DH is going to look for some letters etc for me though) and I’ll start a new thread if I need to as I don’t want to drag this one into one topic 💐 thank you for replying though x

@SingToTheSky I just did my DDs PIP renewal firm and it honestly wasn’t too bad once I got my head round it. Do you have a copy of the original claim form showing what you said at that point? I typed up a ‘typical day for DD’ plus a summary of all her conditions and all the individual symptoms. Nurse wrote a letter supporting her understanding of DDs symptoms and how they affect her. On the firm itself I wrote ‘no change’ or detailed any worsening of symptoms and also reminded at each question what I’d said before. It took 3 days doing a bit each day. I sent it in 3 days before cut off and nurse I cla but saying DD couldn’t possibly speak on phone ( in case they wanted to do a phone assessment). I got the reply back within 2 weeks and was both pleased and gutted that she’s been extended to February 2027. She’s still on max levels for mobility and daily living. Hope this helps .a friend whose husband’s funeral was on her deadline date got a 2 week extension to complete the one for her son. You need a decent reason I think they are being quite strict