Missing you all: IM having a very rough time second... - NRAS

NRAS

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Missing you all

allanah profile image
110 Replies

IM having a very rough time second knee replacement operation , four months after the first.

I should be grateful its all happened so quickly but omg the pain , its constant and brutal.

Im 4 weeks post operation . I had a bad reaction this time to morphine which left me ( normally a hugely positive person) depressed with severe suicidal thoughts .

Thankfully I sorta realised it and called my GP 8am . He was very down to earth and just said , its your morphine , stop it now! Which basically was all I needed.

So im still in pain but coping a bit better. See physioterrorist tomorrow and will have to explain why I lost a lot of last week.

Im letting you know this just so you are aware of side effects of drugs, you may like me, have taken easily in the past.

Im so grateful hubby here, i dont know how people do this on their own , never mind both at once .

Anyway yall have a good sunday. Oh just seen about the queen, sad , she was a good one x

110 Replies
Boxerlady profile image
Boxerlady

I was thinking about you yesterday and wondering how you were.

Sounds awful - so sorry to hear what you're going through but hopefully things will start to look up now.

Sending lots of gentle hugs and positive thoughts 💐

allanah profile image
allanah in reply to Boxerlady

I hope so , think i feel better just now in the head, need to know physio wont tell me off tomorrow!

stbernhard profile image
stbernhard

Don't give up allanah. YOU CAN do this. Sending you lots of healing hugs.

allanah profile image
allanah in reply to stbernhard

Oh it just wasnt me , was it!!! Sat planning clean methods of finishing me off lol . So glad the gp was right about the morphine , horrid how badly you can be affected. Luckily can see the " funny" strange side of it now ....

Garnacha profile image
Garnacha

im so sorry to hear how poorly you are, morphine can have horrible effects.

Sending you gentle hugs & healing thoughts & hope you're feeling much better soon xx

allanah profile image
allanah in reply to Garnacha

thank you , cant wait for the pain to improve. Its weird ... ive had tons of ops and been fine but these knees yikes !

Madmusiclover profile image
Madmusiclover in reply to allanah

I can’t tolerate morphine for other reasons. I use Nefopam. Worth asking about?

Neonkittie17 profile image
Neonkittie17 in reply to Madmusiclover

I was prescribed Nefopam after two ops last year/year before and it worked brilliantly as Oramorph didn’t suit me either.

allanah profile image
allanah in reply to Madmusiclover

thanks ill ask tomorrow

Deeb1764 profile image
Deeb1764

sending you hugs I know how bad side effects can be after 2 anaphylactic reactions it does get scary how they can make you feel from amazing to awful.

Physio hopefully will come up with a plan! X

allanah profile image
allanah in reply to Deeb1764

oh i hope so, yes i had anaphylaxis to ritux, not fun ! Weird when your head gets involved though, a first for me, hope its the last !

Oshgosh profile image
Oshgosh

have they suggested an alternative pain killer.

If physio is negative with you,tell her about the morphine.

Your pain needs to be controlled,so that you can do you exercise routine and get a good result xxxxxxx

allanah profile image
allanah in reply to Oshgosh

im on codeine , paracetamol , diflophenac suppositiries at night and i called rheumy and was allowed to go back on my rhemy drugs on tuesday , so lets hope they take effect soon as of course hands shoulders feet all hurt too! Thanks xxxx

Oshgosh profile image
Oshgosh in reply to allanah

that all sounds hopeful.don’t let the physio bully you.xx

allanah profile image
allanah in reply to Oshgosh

ill try , can only do so much !

Green230461 profile image
Green230461

sorry to hear about your knee! You are very brave to talk about morphine! I must say that I had a similar strange reaction. I was having a very long conversation with my dad about it every day- problem is- he died 20 years ago. Dr smiled and told me to give my prescription back to him……

Take care of yourself and get better soon 💐

allanah profile image
allanah in reply to Green230461

phew ! Poor you, not just me then xxx its horrid though , so real , genuinely thought no one would give a damn x

Neonkittie17 profile image
Neonkittie17 in reply to Green230461

I had aural hallucination s on a high dose of Fentanyl patch around ten years ago (I have half that dose now) and it was as clear as anything I could hear my late auntie talking to me and calling my name. The GP said go back to your previous dose as it’s common to get the AH’s when you have a higher dose of morphine. Oramorph didn’t give me the AH’s. Just made me feel so down and that’s not something I ever felt before. At least I knew why l.

allanah profile image
allanah in reply to Neonkittie17

yes first time ive had it, not nice....my stitch has just burst through the wound would you believe!

Neonkittie17 profile image
Neonkittie17 in reply to allanah

Sounds awful. I hope things start to pick up soon. 🙏🏻

Green230461 profile image
Green230461 in reply to Neonkittie17

thank goodness I’m not the only one!

Neonkittie17 profile image
Neonkittie17 in reply to Green230461

I thought I’d finally gone gaga. 😳

allanah profile image
allanah in reply to Neonkittie17

worse..... i was planning using the bath so it would be easier for them to clean doh 😪, bad stuff. Ok now though apart from this stitch loop come out through wound tonight. Doctor specialist 9am ....

Neonkittie17 profile image
Neonkittie17 in reply to allanah

Hope you get this sorted tomorrow ASAP. Sounds like movement as you try to become more mobile has caused it to come prodding its way through and needs modifying and also swelling and skin being taut so soon after the op leaves the skin thin and unable to keep the stitch loop from breaking the skin. Presume your stitches are dissolvable and disintegrate with time but my dissolvable ones took some time to actually disssolve with two (non rheumy) ops last year/year before. They hurt as I moved too. It was the knot on one that hurt the most as it touched against my clothing and any pressure against it. I’m hoping your stitches will break down soon but at the mo they’re needed there to hold things together as it’s early days I’m a huge op. 💗

allanah profile image
allanah in reply to Neonkittie17

spot on ! Saw doc today. It hapoens he says ! Leave the loop to the air and it will dissolve. Feel weird looking at a stitch!

Asked hiw i was feeling and if i needed support which was nice . Also my bend has improved !

Neonkittie17 profile image
Neonkittie17 in reply to allanah

“Bend” meaning reach/range of movement improved already? I hope so! The knots are often tight and painful in the dissolvable stitches ... I kept sitting on one. Ouch. Yours will be soon be gone. Glad you got the reassurance from the doc.

allanah profile image
allanah in reply to Neonkittie17

yes with hips it back forward , little to side.

With knees its back , forward , bend behind in direction of your bum but they are happy with what you need to go upstsir ride a bike etc which is 125, mine is 100 today!

Neonkittie17 profile image
Neonkittie17 in reply to allanah

You sound to be doing great with the movement. Keep at it and I hope the pain lessens with every day. 💗

allanah profile image
allanah in reply to Neonkittie17

not just yet it isnt lol 😆

Neonkittie17 profile image
Neonkittie17 in reply to allanah

Soon 🙏🏻💗

Biofreak profile image
Biofreak

Our minds can do strange things with the help of some drugs. Pity you can't know in advance how they are going to affect you. Hope your knees improve quickly. The physioterrorist (great description which shows you've got your sense of humour back) should understand. Best of luck xx

allanah profile image
allanah in reply to Biofreak

thanks, fingers crossed !

Green230461 profile image
Green230461

I was having conversations with my dad standing at the end of my bed in the hospital. The nurses said I was quite lucid! Trouble is he died in the late 90s.

Consultant just smiled told me my dad was very sensible and changed all my meds starting with morphine it is the strangest thing I have ever experienced 💐

allanah profile image
allanah in reply to Green230461

My uncle was in hospital aged 80 . Said to the nurse his mum was coming to visit him. She smiled xx visiting time comes along and my auntie aged 100 marches down the ward to see her boy !!!! She was a character!

Green230461 profile image
Green230461

That is wonderful!👍

Monkeysmum profile image
Monkeysmum

So sorry to hear about your pain and the reaction to morphine, very scary for you. Hope things start to improve for you now allanah, sending big hugs 🤗

allanah profile image
allanah in reply to Monkeysmum

thanks, tough couple of years shielding plus 2 knee replacements

Pippy25 profile image
Pippy25

I am so sorry to hear this allanah and glad you sought help there via your GP.

My heart goes out to you and please know I am sending you some positive, supportive and good wishes and vibes. Take one day at a time and little by little. I hope that things begin to turn a corner for you and start to improve. Bless you xxx 💐

allanah profile image
allanah in reply to Pippy25

thanks, fingers crossed!

sylvi profile image
sylvi

You will get through this darling and better days will come. Hugs my darling. xxxx

allanah profile image
allanah in reply to sylvi

thanks S xx

nomoreheels profile image
nomoreheels

Sending you love E. x 🫶

allanah profile image
allanah in reply to nomoreheels

thank you xxx

allanah profile image
allanah in reply to allanah

now a stitch loop come out

Lolabridge profile image
Lolabridge

So sorry to hear it’s been so hard for you this time and coping with such constant pain is so awful for you. Thank goodness for your good GP and attentive hubby I’m sure coping would be so difficult otherwise.

I do hope Nella starts to behave nicely very soon and sending hugs 🤗 to keep you going xx

allanah profile image
allanah in reply to Lolabridge

well i dont know how people do it alone or two knees together, they are brave

Lolabridge profile image
Lolabridge in reply to allanah

No indeed! Both my elderly neighbours who live alone went to a convalescent home after their hip replacements. I will do the same if I need my hips or knees done I think!

allanah profile image
allanah in reply to Lolabridge

hips apparently are much easier cause you dont have bend to relearn

Kags1068 profile image
Kags1068

Hi Allanah

I'm really sorry to hear you've been going through this with the Morphine, on top of everything else. It really does sound scary - thank goodness your GP was on the ball. Quite shocking to think you've had it before and been ok - you really never know, do you?

Like you, i've had morphine a number of times previously and still using oramorph at night on top of the tramadol etc, for my leg. Although I've always been ok so far, your experience is very much a cautionary tale. Only once have i had a bit of a weird experience, 6 years ago when i had a hip revision. I was given MST (which i understand is a type of morphine). At one point i was lying in bed, with a group of doctors around the end of the bed, and i was having a very animated discussion. Turns out i wasn't! My friend turned up to visit and saw me in the bed, eyes closed , my mouth moving and sort of moving my arms around! It must have been a bit of a hallucination, and as no harm done, in that moment it seemed amusing. What's happened to you shows the other side of how it can be - and the fact you're not necessarily aware as it all seems very real. I'm glad you're starting to feel more normal.

As for the knees - they are tough ops to get through, and you certainly haven't had the easiest time of it - starting with being discharged way too soon. I hope your physio goes well tomorrow and isn't too painful. Ive got physio tomorrow too for my leg. I'll think of you trying to get those knees bending whilst my leg is suspended from the ceiling!!😄😄 We have to try and see the funny side when and where we can, don't we?! Very best wishes xx

allanah profile image
allanah in reply to Kags1068

fun and games eh!

Kags1068 profile image
Kags1068 in reply to allanah

yep, you said it .........😉xx

Blackwitch profile image
Blackwitch

Hi Allanah. People seem to think that knee replacements are all straight forward and easy because they are so common. I had my right knee done in 2014 after two falls (and osteo) and then sideswiped by our mad labradoodle. That completely finished me off. Decided on an epidural and sailed through the hospital physio. When I got home it really hit me. It was easier once the staples were out but even so….. nothing can prepare you for the pain. My sister is coming out of hospital today. She had only recently had her right hip replaced but had both knees done together. I don’t think she realised what it was going to be like but she’s braver (and older) than I. I hope you improve quickly now you’ve sorted out your drugs. I bet you’re already thinking about Glastonbury next year. xx

allanah profile image
allanah in reply to Blackwitch

ouch, yes registerd to see if i can get tickets, if not im on the access team!

Neonkittie17 profile image
Neonkittie17

Aww you’re still making me smile, re physio terrorist! .. even though you’re having a bad time. 😢 Let’s hope the physio can work some magic for your knee. Was going to say morphine makes you feel all over the place. It made me depressed when I had to take it when my RA’ infusion was delayed for almost two months in 2015 and I was left by rheumatology to go downhill. 🤬 Thinking of you. Healing vibes and Gentle hugs. 💗xx

allanah profile image
allanah in reply to Neonkittie17

thanks

allanah profile image
allanah

youll never believe it huge loop of stitch just burst through skin .

Mozart150 profile image
Mozart150

you have been through soooo much ! Sending you get well wishes-I hope all your physio goes really well. ❤️❤️🥰🥰

allanah profile image
allanah in reply to Mozart150

thank you . He said judt leave the stitch to the air andvmy bend is improved !

rabbits65 profile image
rabbits65

sending you a lot of love and best wishes for a speedy recovery. xxxxxx

allanah profile image
allanah in reply to rabbits65

thank you Rabbits , i need some " rabbit foot" luck !

rabbits65 profile image
rabbits65 in reply to allanah

😂😂🤣. 🐰🐰🐰🐇🐇🐇

allanah profile image
allanah in reply to rabbits65

🤣🤣🤣

allanah profile image
allanah

yikes

Stitch wound
Sheila_G profile image
Sheila_G

I am so sorry to hear you are in such pain. I hope it settles down soon and you can start to build up the strength in your legs. Try to be positive and see a light at the end of the tunnel. I am sure it will be worth it in the long run. Sending healing hugs. x

allanah profile image
allanah in reply to Sheila_G

the physio todsy was lovely , asked if i needed help.etc sk thst was nice plus my bend has improved !

Sheila_G profile image
Sheila_G in reply to allanah

That's good news. You will get there. x

allanah profile image
allanah in reply to Sheila_G

hoping to see that light. Im only 4 weeks, last knee was 10 before i felt more useful!

Bessieboo1 profile image
Bessieboo1

So incredibly sorry that you are having such a crappy time. I hope that things will start to improve now for you. Good luck with the physio🤞. Lots of love and hugs 🤗 xx

allanah profile image
allanah in reply to Bessieboo1

thanks Bessie, yes doc said two in a row is hard but if i needed support i could get sone, i thinknit was a morphine reaction though ..

greynot profile image
greynot

Sending love and gentle hugs...thank goodness you are so grounded and have the good support. Hope the worst is behind you, physioterrorist notwithstanding, and that you heal well from now (that stitch looks something else!)

Next year's festivals will soon come round xxx

allanah profile image
allanah in reply to greynot

thanks grey... they were lovely this morning so that is good x

helenlw7 profile image
helenlw7

I’m sorry to hear how you are after your 2nd knee op. I read with interest about your reaction to morphine as I’m on the waiting list for my first knee op. You’re in my thoughts and I send you gentle hugs.

allanah profile image
allanah in reply to helenlw7

thanks helen, nice to know someone out there thinking of me, feeling much better today

helenlw7 profile image
helenlw7 in reply to allanah

I’m happy to hear you’re feeling a bit better today.

medway-lady profile image
medway-lady

I'm so sorry to read this but love your humour and staying posative. I know what you mean my broken leg is a bit more than sore but the impressions of time walking by my husband and his blackmail of I'm devoted to you as long as you say that I can go for a week in May to play golf in Portugal is keeping me going. My boot is covered in Peppa Pig stickers and its the silly things like putting on socks which is making time. But at least no morphine just paracetamol although I was offered gas and air when they xrayed my leg. It was a no no for a lot of pain relief as it has a low clearance rate so my kidney function could be affected. Luckily taking paracetamol worked fine and now as the bruising fades the pain is improving. I'm so lucky the break was not down to bone problems and it is healing which is a good thing. I know its healing as movement is much easier and so hopefully at fracture clinic tomorrow its off to the phsioterrorist (I love that) for more help. Worst thing so far is the crumbs on the kitchen work surface and resisting the urge to say " can you wipe the tops please" as I don't think he can even see them because he doesn't notice trivia like crumbs. The cleaner comes today and so by tonight things will look nice again and no crumbs anywhere and I'll be able to see in my mirrors. lol XX I hope this makes you smile too as your post made me chuckle. All best wishes and love.

allanah profile image
allanah in reply to medway-lady

lol. I wish id got a cleaner but hed be offended, bless him hes never stopped but yeas my bedroom is 6 in thick in dust !

madme1 profile image
madme1

Sending gentle hugs Allanah, my brother in America had the same op and is still in pain but hes coping. He says hes coping with help from his wife and family and numerous phone calls to me! God knows how i help him cope!😅 Youve got this, you took the right steps already by contacting your gp, then coming on here. Keep fighting.

allanah profile image
allanah in reply to madme1

ah he knows the feeling the american fb site is awful. They boast day 1 back at work, day 2 on my bike like pinocchio!!!! The uk knee replacement site us better!

madme1 profile image
madme1 in reply to allanah

He doesnt do Facebook anymore, but he used to phone my mum every Sunday but she passed away last year so now he phones me instead. Sadly Idont hear anything from my other brothers who live 5 and 10 minutes away from me but hes the only one who keeps in touch, well thats families for you.

allanah profile image
allanah in reply to madme1

mine are 4 hours away and its daily calls

Happy5 profile image
Happy5

Awww poor love, I've heard knee replacements can be rough.

I was given Oramorph post op (hip replacement) and my BP plummeted into my boots,

morphine is a great pain relief but can be fraught for ones of us who react.

Sending🤗 and speedy recovery 💐

allanah profile image
allanah in reply to Happy5

oh yes my bp dropped too lol, seems its not for mex

Hannah-NRAS profile image
Hannah-NRASAdministrator

Hi allanah,

Sorry to hear of the negative effects morphine had on you and I hope that your healthcare team are taking actions to find another pain medication to help you during this time and to support you in your mental health as much as physical.

Please remember you can self-refer onto a talking therapy here: nhs.uk/mental-health/

Below are some other resources which I hope will help you take care of your mental health and wellbeing at what I am sure is a difficult time for you.

mind.org.uk/

samaritans.org/

nhs.uk/every-mind-matters/

I hope you find this information useful and wish you all the best. Should you require any additional information or support please contact our helpline on 0800 298 7650 (Mon-Fri, 9.30am-4.30pm) or email us at helpline@nras.org.uk

Wishing you all the best and a swift recovery,

Hannah - NRAS Information and support coordinator

allanah profile image
allanah in reply to Hannah-NRAS

thanks Hannah, great advice above .

I was in a place i didnt know i was wrong to be thinking that way !! It was when i stopped the morphine i felt, omg what was that. At the time it was very sensible!!

Im glad the gp was so straightforward and helpful. Thanks for all the nras help x

Dspooky01 profile image
Dspooky01

Just read your post E, so sorry to hear what you’re going through. I hope that you have managed to get your stitch sorted out today and that you’re feeling better despite the pain. It’s surprising how some drugs can affect you, especially when you’ve had them before without a problem. It’s good that you realised what was occurring and that your GP was on the ball (and reachable). Hugs xxx

allanah profile image
allanah in reply to Dspooky01

yes the receptionist was like whats the problem, i said its personal , she said can you give me a clue so i can help more quickly, i said im gonna kill myself, phone call back 1 minute!

Weird as im the most positive person on the planet by nature! Very strange ..... and i hope thats the last i ever get !

Blodynhaul profile image
Blodynhaul

Very sorry to hear of your pain and side effects of the morphine. Hope very much both will improve very soon. Hang on in there :) X

allanah profile image
allanah in reply to Blodynhaul

thank you , will try hard xx

Vixen2 profile image
Vixen2 in reply to allanah

Allanah. Me again! I’ve just remembered. When i was first diagnosed with RA. I was 21 like i said. I was on alot of serious painkillers, steroids, anti inflammatories. I was on sulphasalazine. (8 a day of those). Indocid (6 a day of those). Serious meds. I was married at the time. My brother in law came into the room. Suddenly i didn’t recognise him. I asked who he was. We often joked around. He laughed. Then he could see by my eyes. (They were blank, dead). He was worried. Told my husband. I couldn’t make any sense of a tv programme we were watching. I couldn’t read, or write. I was a total zombie. My husband rang my rheumatologist. She was lovely. Very calm & said that’s fine. We’ll just lower the dose. I was ‘normal’ the next day. A very scary experience. Glad you’ve come off the morphine. X

allanah profile image
allanah in reply to Vixen2

ah , strange stuff ! What a bunch we are x

Devonshirelass profile image
Devonshirelass

Sorry to hear your struggles Allanah, it does sound grim. It can only get better so stay with the physioterrorist - loved this. It’s a long journey sometimes.

allanah profile image
allanah in reply to Devonshirelass

tired of it 2011 ra , wheel chair bound, treatment for ra started , onto sticks etc . Chemo and radiation for RA non malignant growths 20 weeks , day care monthly tcz , more physio, etc etc hand surgery for weird joint fibromas .spinal surgery . Left knee replacement last november , right knee 4 weeks ago .yep long haul.

However i have a very RARE form of RA , so dont panick!!!

CripLady profile image
CripLady

Gosh you’ve had a journey and a half. Just take it easy and day at a time type stuff. I will need to get my knees done in the future but reacted badly enough to cocodamol!! Gas & air for me I think. You’re very brave for having both done in a year. I predict limbo at Christmas. Take care xx

allanah profile image
allanah in reply to CripLady

lol. First grandbaby due early november, hoping to being of some help.then ....

CripLady profile image
CripLady in reply to allanah

Best present ever 🎉, and always good to have something to look forward to x

Vixen2 profile image
Vixen2

Hey Allanah. We’ve never ‘met’. But we all know about pain on this forum. I’ve had RA since i was 21. (51 now). About 20 yrs ago I had to have both my big toes fused at the same time. (I found walking very painful). Had to wear those awful big shoes after with crutches for about 3/4 months. Total agony. The only plus about those horrible big shoes, was. I always got a seat on public transport! One day i was getting on the escalator at Holborn Station. A couple were giving me a weird look. So i was giving them a weird look too. Then as i got to the top of the escalator. They yanked me up!!! I was so grateful. People are very kind when they see someone’s vulnerable.

I was on morphine too. Thank God i didn’t get a bad reaction to it. It’s so important to address any mental health issues as soon as possible. You totally did the right thing. Great gp too. I’ve felt quite low when i’ve overdone the vino & i’ve told myself, this is only a temporary mood. Then i’ve made myself a coffee, put something funny on my tablet & sobered up!

I’m actually in bed now. In agony. Because of the immuno infusion i have for RA. I’ve got strep throat. On antibiotics. 8 a day for 5 days. Feels like i’m swallowing glass. Plus i feel so ill. The immuno drugs really help treat the condition. But they leave you open to infection too. I’m still so grateful for the treatment though!

It is sad about the Queen. I can honestly say. I will not be queuing to see the body. I can’t stand for 20 mins. Let alone 20hrs!!!!!!!!! I might go & look at the crazy people queuing. I can’t believe people are actually going to do this.

Good luck with your knee. Pain is a bloody pain!!! X

allanah profile image
allanah in reply to Vixen2

oh gosh Vixen youve been there too. Frustrating but we always seem to bounce back !

Vixen2 profile image
Vixen2 in reply to allanah

yes Allanah. Sometimes i feel like a bloody ball. X

allanah profile image
allanah in reply to Vixen2

a rubber one

Vixen2 profile image
Vixen2 in reply to allanah

🤣🤣🤣👍🏼👍🏼👍🏼👍🏼 i think we all agree on this forum. X

Mmrr profile image
Mmrr

Thinking of you.

allanah profile image
allanah in reply to Mmrr

thanks lovely, i know you have bad pain at times too

allanah profile image
allanah

lol press on image

Carton
Plumcrumble profile image
Plumcrumble

oh no, so sorry your going through this, sending you love and best wishes 💐💕💕💕

allanah profile image
allanah in reply to Plumcrumble

today is better! I slept !!!! and hubby drove me to a coffee shop , it was lovely. Back in quickly ice and ekevated legs and painkiller but it was lovely

Plumcrumble profile image
Plumcrumble in reply to allanah

thats good 👍👍💕💕💕

Bethany02 profile image
Bethany02

Ask about fentynl patches less toxic and wear off quickly

allanah profile image
allanah in reply to Bethany02

thank you xxxx

hatshepsut profile image
hatshepsut

Hi, so sorry you've been having it so bad. I vividly remember my tkr.....unbelievable pain. Had a hip replacement last year, and couldn't believe how much easier it was!

Despite the pain then, I have been so grateful longterm that my knee was done, it gave me my life back!

Wonderful that you are expecting a grandchild. That will pull you through.......the most brilliant experience! Gives you an incentive to get there quickly.

Take care, don't give in.....you will make it!! xx

allanah profile image
allanah in reply to hatshepsut

thank you xxx week 5 now , knee 1 creaking and groaning and knee 2 aching but im managing physio and sleeping a bit !! Doc said i need the morphine but only 2.5mls at night for break through pain so ive taken his advice, all be it reluctantly but it seems to have helped

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