I had the worst pain of my life last night. I couldn’... - NRAS

NRAS

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I had the worst pain of my life last night. I couldn’t get out of bed for 1.5 hrs!

Vixen2 profile image
54 Replies

I come on here sometimes to have a good moan. I’ve had RA since i was 21. (30 yrs). Plus Iritis & Glaucoma.

I’ve had an awful time the last month. First i had a very painful flare of my Iritis. Deep throbbing, burning, aching in my right eye, very bad vision. Had to go to Moorfields a&e. Went at about 10pm on a Sunday night. Was told ‘yes. I have Iritis’. Told to go on hrly steroid eye drops & to go back to a&e the next Fri. Was given a steroid injection in the eye. The injection was fine. But the abaesthetic drops were awful. Felt i was choking after. Nearly had panic attacks. Sat in the waiting area with loads of water & a banana. Then left after 2 hrs. I was so nervous. Had a big eyepatch on. It was so hot & i felt very dizzy. I felt so vulnerable. A lovely ‘guardian angel’ guy came & walked me to my bus stop. I felt so emotional. Very grateful he’d helped me.

Then about a week later, i developed a urinary tract infection. Felt very ill. My right kidney started to cause problems too. Of course it happened at the sodding weekend. No pharmacies open. (Eventhough i live in Central London). Couldn’t face a&e. So on Mon morn. A gp wrote me up some antibiotics over the phone. I went to the surgery & gave a urine test. They said i had E Coli. Took the antibiotics. Then i started having severe pain in my left shoulder. I was diagnosed with Bursitis in that arm last yr. this flare up was total agony. I went to UCH a&e on the 8th of Aug. Was there from 17.30-00.30. 7 bloody hrs. They did xrays, blood tests & urine. Told me i still had the infection. Gave me some antibiotics introvenisley. Plus morphine & codeine for the pain.

I’ve had serious pain over the yrs with this sodding RA. I’m sure everyone has on here.

But last night. I called my gp surgery. Spoke to an onduty dr. She told me not to go to a&e. That she didn’t think it was my kidney & to take my NSAIDs regularly & see my gp today. I’m so annoyed she put me off a&e. I had one of the worst nights of my life. DEEP DEEP SHARP SPASMS in the right side of my back.They felt like i was wired up to the mains. Electric shocks everytime i moved. I was crying. Tried to stop, as the pain was unbearable. I live alone. So i felt very depressed & helpless. From about midnight until 1.30am i coukdn’t get out of bed. I was scared. I couldn’t even reach my painkillers. I suddenly thought of brilliant utube. Looked up how to get out of bed with severe back pain. Saw a good vid. Told you to put a pillow between your knees & a cushion under you. Then roll. Worked wonders. Then i rolled over & got my strongest painkillers. I can’t explain the relief when i just got to the sitting position. I was elated. Waited for them to work. Then slowly made a lovely cuppa! & a couple of naughty choc digestives.

Today i’m going to try & have my 6 weekly infusion. Or see my gp. The relief to be able to walk again. Still having spasms. But nowhere nearly as bad.

Sorry to waffle on. I always write a novel.

Hope everyone has as much of a pain free day as they can! X

54 Replies
sylvi profile image
sylvi

Hugs from me and i wish better day s for you.xxxx

Vixen2 profile image
Vixen2 in reply to sylvi

Thank you Sylvi. You’re very kind! Getting a lovely bowl of chunky chicken soup, cuppa, painkillers & something on my tablet! Hope you have a nice day! X

Fruitandnutcase profile image
Fruitandnutcase

Oh goodness, I can’t say anything that will help with everything that’s wrong but I’m sending you my kindest wishes.You’ve done the right thing. At Pilates we (were her very creaky group) are always told to get up and down ‘through our sides’ basically rolling onto our sides before we move to standing.

You’ve also done the right thing by having a lovely cuppa and a couple of medicinal (not naughty) chocolate digestives.

Hope today is a much better day for you ((( big hugs 😘)))

Vixen2 profile image
Vixen2 in reply to Fruitandnutcase

Fruitandnutcase. You made my day. I’m getting emotional. Which is bloody agony! Thank you for your very kind words. Hope you have a pain free day! X

Big big gentle hugs.

Some days it can all become so much.

You've had a terrible time of it this past month, you've done it though, that's what I tell myself, thingsbhave been harder than before but I'm still here !

You enjoy those biscuits and I hope your infusion helps get you some comfort xx

Vixen2 profile image
Vixen2 in reply to Marionfromhappydays

I get so emotional when people are so kind. Thanks Marion. I liked Happy Days too. Hope we can all have some more happy days soon!! X

Marionfromhappydays profile image
Marionfromhappydays in reply to Vixen2

Definitely x

Deeb1764 profile image
Deeb1764

You waffle as much as you need too we all have those moments x

Vixen2 profile image
Vixen2 in reply to Deeb1764

Thanks alot Deeb. It’s lovely when people understand what we’re waffling on about! X

Deeb1764 profile image
Deeb1764 in reply to Vixen2

I had a super bad night as rain and wind with RA and fibro dont mix well with me! The p ain off the charts. Plus my year old kitty was not liking the weather so decided to suckle my arm and chin most of the night. So had to nurture her whilst fighting pain.x

Vixen2 profile image
Vixen2 in reply to Deeb1764

Aaah. You’re strong. Nurturing your kitty while trying to fight off the pain. But pets are great. I bore everyone telling people about my lovely Syrian fury friend. (Eric. He’s a gorgeous brown, white n black hamster). He’s got the loveliest little face. He’s been so hot. In & out of his little house all day long. Wish i could gove him a fur cut. I try to let him out at night in my lounge. (When i’m up to it). He loves to run around & hides behind my cupboard. It’s cooler there. Pets can really cheer you up.

I’ve got to go. A lovely Rheumatologist Dr just rang to say i should go straight to a&e. I need more tests. He had a lovely sympathetic manner.

I’m going to treat myself after. Might try & buy some berry magnums. I’ll need cheering up. I feel i’ll be in a&e another sodding 7 hrs! X

Mmrr profile image
Mmrr

I get the back spasms, like you I live alone and was trapped in bed last Hogmanay, unable to move or reach meds. After much negotiation NHS 111 sent paramedics who took 2 and a half hrs to get me out of bed using entenox (gas and air). I've since had several other episodes, but fortunately have had someone in the house to help me or have been able to ring for help, having experienced the spasms several times I'm a bit bit less fearful of them now. Unless you have experienced these back spasms you have no idea the pain involved. I've given birth to three children, two without any analgesia other than entenox, 10 hr labours (analgesia and don't get along very well). The pain experienced with the back spasm was much worse and much scarier than giving birth. The paramedics who attended me on Hogmanay said I wasn't the first woman to say that to them.

Well done to you for accessing YouTube, I would not have thought of doing that 🙃. I use the roll method and a pillow between my knees, it then takes upwards of 2 hours to sit up a few millimeters, lie back down, sit up a few millimeters more and so on until I eventually can sit up.

I have found 2mgs diazepam (valium) fairly helps reduce the spasms. My GP gave me 14 tabs in early January, I still have around half left only using them in absolute emergencies. They might be worth asking about.

I hope you enjoyed your cuppa and digestives ☕🍪.

Vixen2 profile image
Vixen2 in reply to Mmrr

Thanks alot Mmrr. You understand spasms alright! Since i wrote that earlier post. A rheumatology dr rang me this morning & told me to go to a&e. He’s worried i have a kidney infection. The staff have been fantastic. Icould hardly walk into a&e. The spasms were so severe. They pushed me straight through. I’ve been here 3 hrs. They’ve done so much. Blood tests, xrays, MRI. Plus they gave me morphine, diazapan & 2 paras. Plus a urine sample. Now it’s the nervous waiting!!! You sound like you’ve been in total agony. Pain is indescribable. No one knows what it’s like until they experience it. Good luck with your health stuff too. X

Mmrr profile image
Mmrr in reply to Vixen2

I'm so pleased to hear that you are receiving appropriate care today, even if you are having to wait. Do let us know how you get on ?

Vixen2 profile image
Vixen2 in reply to Mmrr

Hi Mmrr. I thought i’d been pushed ahead. Well i had in a way. I got there at about 13.30. Didn’t get out until 21.00!!!!! I was desperate for a cigarette. But as i said. The staff were lovely. Worked so hard. In the end. I didn’t have a kidney infection. (Thank God). I was told it was a severely pulled muscle. Eventhough i’d had an extra dose of morphine with all the other painkillers. I still limped out. The pain was definitely still there. What did surprise me (& the dr). Was that they’ve found a couple of kidney stones by my left kidney. The excrutiating pain was by the right kidney. I know pain can move around. Anyway. I’ve been referred to a specialist. Could take 1-2 weeks for the appointment. I’ve been reading up with Dr Google. Some stones can take up to a month to pass!! Oh well. I was just so grateful it wasn’t anything more serious! Anyway. Going to try & make a lovely cuppa & have scrambled egg on toast. Hope your day goes well. X

Mmrr profile image
Mmrr in reply to Vixen2

Thankyou for the update, good news you are home, but what a length of time you were in hospital 😖 the staff work so hard as you say.

Kidney stones can be painful, I hope they aren't with you. A pulled muscle ???????

Oh dear.

I've just had an egg roll and a latte, yummy. Enjoy your breakfast/ brunch.

Take care.

Vixen2 profile image
Vixen2 in reply to Mmrr

Thanks again Mmrr. I was dreaming about my bed when i was lying in that trolley all those hrs. My bum was going numb! & it was quite cold in the cubicle. Eventhough i had a blanket over me! I kissed my bed when i got into it!! That must be how the poor staff feel. My lovely late mun was a nurse. She worked so hard. She’d come home & fall into her armchair. Didn’t have the energy to take her coat off. I’d make her a cuppa, with a nice chunk of cake. I’d help her get her coat off. Then we’d watch the Golden Girls together. A little ritual we had. Very sweet times. X

Mmrr profile image
Mmrr in reply to Vixen2

Lovely memories.I too was a nurse and midwife in the 1970s and 80s.

We thought we worked hard then, but things have changed so much.

I was in hospital for 8 days last year, the nurses were completely wiped out after a 12 and a half hr shift.

Liggle profile image
Liggle

oh darling I’m so sorry , you are on your own . I have had that sort of terrible pain always at night or weekends . Thank god I have a very great husband . God knows why he stays they don’t sign up as carers RA is such a awful disease. With know cure . Wishing you all the love just wish I could help, but sadly I in the same boat

Vixen2 profile image
Vixen2 in reply to Liggle

Hi Liggle. You’re very kind. I do live alone. But i also have a partner. We just get on better if we don’t live together. He’s got his space & i’ve got mine. It means we don’t argue over who’s snoring. Or what we want to watch on tv. I’m the boss & i get to please myself. He stays over a couple of nights a week at mine & vice versa. He got my shopping for me yesterday & helped me out of bed. I also have a gorgeous little hamster called Eric. He might not be practical. He can’t help me out of bed. Or make me a lovely hot cuppa. But he does make me laugh. Which is quite important when you’re not well. Thanks Liggie. Hope you have a nice day x

Mmrr profile image
Mmrr in reply to Vixen2

I have a partner of 21 years we have our own homes too.It works well.

Vixen2 profile image
Vixen2 in reply to Mmrr

Great Mmrr. My partner & i have been together 15 yrs & it’s great to have your own space. If i can’t sleep. I can get up in the middle of the night. Have a midnight feast, whack on my tablet & laugh out loud if i want. Freedom’s GREAT!!!! X

stillsdisease profile image
stillsdisease

I can not imagine the pain but recognise the level of pain you describe. When we woman say it’s worse than childbirth it’s bad!A few times early in diagnosis I experienced pain so bad I wanted to die so Understand your suffering.

Sending you strength to face the day and hoping for a better day for you.

Vixen2 profile image
Vixen2 in reply to stillsdisease

Hey Stillsdisease. You’re very kind. I’m trying to psyche myself up into getting a cuppa & scrambling some eggs. My flat needs tidying up. But when i’m in this much pain. You can ‘screw’ the housework. Keeping yourself ‘sane’ is more important. Plus treating yourself with a chunk of cake. Or a lovely cold magnum. I love the berry ones with white chocolate. Or the salted caramel cornettos. Just orgasmic!!!! Hope your day goes well. X

Outdoors07 profile image
Outdoors07

Sending big 🤗

Vixen2 profile image
Vixen2

Hey Outdoors07. Thanks alot for your virtual hug. Really helps. (So do painkillers & a big fat chocolate eclair!!!) x

Maureengibson profile image
Maureengibson

Sorry to hear of your struggles. That was so wrong of your gp to tell you to avoid A&E. Severe pain in the kidney region, where many patients say they feel suicidal with the pain, is a red flag for kidney stones. They are known within the medical profession to be one of the worst pains you can suffer. I hope you don’t have too long to wait for an appointment. My hubby has had kidney stones, he eventually managed to pass them and has been fine since. Take care, rest up & sod the housework 🤗

Vixen2 profile image
Vixen2 in reply to Maureengibson

Hey Maureen. Thanks for your reply. I actually rang my gp surgery & told them i was annoyed with the duty dr. She’s sent me a complaints form. I didn’t want to go that far. I just wanted them to have a word with her. I know they try & put patients off crudding up a&e. But i have chronic conditions. I didn’t just hurt my finger & turn up at a&e. Anyway. I’m have some choc digs a cuppa & then the DRUGS!!! Glad your husband ‘pushed through the stones’. Have a lovely day x

wilbertjellyfish profile image
wilbertjellyfish

The only way is up. Stay strong. I'm crying for you because it is sh**t. 😘

Vixen2 profile image
Vixen2 in reply to wilbertjellyfish

Thank you Wilbert. (Great name). Kind reply. People that have been through serious pain have alot of empathy. X

wilbertjellyfish profile image
wilbertjellyfish in reply to Vixen2

Took me 15minutes to sit down on toilet once, I thought that was bad.

Vixen2 profile image
Vixen2 in reply to wilbertjellyfish

Hey. I know. It was so bad. I couldn’t even sit on the toilet seat. I had to go standing up. A bit awkward for a woman!! X

Leics profile image
Leics

OMG you poor thing I can only imagine the pain and suffering you’ve experienced over the last month or so. I know you probably hated having to go to A&E but it sounds as though they’ve kind of got to the route of the problem even though you’re still in pain at least some of the fears may have reduced if nothing else. I slipped a disc a few years ago doing virtually nothing and I was in absolute agony for 6 weeks with spasms so know that one and it’s awful. Currently have shoulder spasms radiating into my neck but still don’t think that’s as bad as what you are going through. Sending get well wishes and hope that Eric and the magnums can help with your recovery. Will definitely look up YouTube video in case I ever need it, so you see you’ve helped others by sharing your experience. Let us know how you’re doing won’t you ?

Vixen2 profile image
Vixen2 in reply to Leics

Hey Leics. what a lovely heartfelt reply. Thanks. A slipped disk must be bloody agony. You don’t realise how much you rely on your joints & back. Every little movement. Eric & some choc digs helped me today. I’ve just taken 2 Co Dydramol & i’m watching a really good film on my tablet. A drama. It hurts too much to laugh!!! Utube is fantastic. It has everything on there. I had real problems trying to change my hoover bag a while ago. Then within seconds, i found a great vid on how to do it. (Wish i’d had shares in utube!!) Have a lovely, painfree day!!! X

Leics profile image
Leics in reply to Vixen2

Sounds like you’re coping well in the circumstances but don’t forget to keep up with the painkillers and don’t tough it out. Mmrr said that diazepam helped her through an excruciating time with her back and I’ve found they’re fantastic for spasm pain although they send me through a loop I’m glad of that sometimes only take half a tablet and spasms relax might be an idea to ask about them. Make sure you drink plenty too coz pain meds can bung you up and that’s no fun at all either that or have some prune juice on standby. Hope your pain goes soon and you’re right about YouTube I used it instead of waiting 3 months for a nurse to show me how to inject methotrexate I’ve done it before years ago but needed a refresher so consultant was happy for me to go ahead and I’ve had zero problems doing it no pain no fuss at all.

Vixen2 profile image
Vixen2 in reply to Leics

Hey Leics. The a&e dr actually gave me diazapam yesterday with the morphine & paras. But he didn’t give me any to take home. Just Co-Dydramol. I wish he had. They did help with the spasms. I defo agree. Utube’s fantastic. Very educational (& funny!) x

PSAWarrior28 profile image
PSAWarrior28

You are such a trooper. Hopefully you'll get a break and have a few pain-free days ahead. Gentle hugs 🤗

Vixen2 profile image
Vixen2

Thanks alot PSAWarrior. How kind. I wish you well too! Xx

WomanOfFaith profile image
WomanOfFaith

I’m so sorry for this difficult journey you have been through since a very young age, but I’m sure better days are coming, I will keep you in my prays. Stay strong and faithful 🙏🏻Kindly hugs 🤗

Vixen2 profile image
Vixen2

WomanOfFaith. You’re very kind. Thank you. People are very kind on this forum. It means alot when you feel so fragile & vulnerable. X

Jmfb1911 profile image
Jmfb1911

You are very brave….I trust you are getting better slowly. ❤️

Vixen2 profile image
Vixen2 in reply to Jmfb1911

Hey Jmfb. Thanks for saying that. But there are people alot worse off than me. Alot of us on this forum have chronic crap like this. It’s the bloody hospital appointments that really drive me mad. All that waiting. Especially going to Moorfields eye hospital. I’ve got an appointment with them on Monday. I’m going mad. My eysight’s still very bad from the Iritis flare up. Still on 2 hrly drops. Then next Tuesday. I’ve got my Infusion for the whole condition. I seem to spend half my life in hospitals. But then so do alot of people!! Thanks again for your compliment! X

Mozart150 profile image
Mozart150

I am so sorry to hear what you are going though -sending much love and hugs and hope you feel much better really soon xx

Vixen2 profile image
Vixen2 in reply to Mozart150

Thanks alot Mozart. (Love your work). 🤣🤣🤣 x

Mozart150 profile image
Mozart150

🤣🤣💕

Vixen2 profile image
Vixen2 in reply to Mozart150

I have a bit of a crazy sense of humour. If i can’t laugh. I will bloody kill myself!!

Al1954 profile image
Al1954

Vixen i have gone threw every possible pain RA can bring .Neuropatic pain left fron shingles left my arm paralized cancer lung problems etc etc .The only advise after 30 years of RA is to make therapy to try to cope with this nightmare.Up to date there is nothing that will cure RA as it is still unknown the causes.Have you tried biologicals ask your gp.Hope you can learn to cope with this terrible illness.Ower emotions in these patologys are the trigger

Vixen2 profile image
Vixen2 in reply to Al1954

Hi Al1954. I’ve actually had RA with Iritis & Glaucoma since i was 21. So i’ve had it 30 yrs too. I’ve been having an infusion of Infliximab for 19 yrs. Without it. I can’t walk. I once had to stop taking it for about 3 months. I wasn’t well. One day the pain started from the top of my feet, all the way up my body. I could feel the fluid building up. I couldn’t lift my feet. The pain was excrutiating. My partner had to lift me onto the bed. (Not in a sexy way!!) He became my carer over night. My ESR was through the roof. I felt suicidal. There were some young girls laughing & joking in the street. They were just having a nice time. But nearly walked into me. I had 2 sticks. I had to shout at them. They nearly trod on my feet. I was terrified. I was 49. Acting like a grouchy old 90 yr old! Pain can make you irritible. Plus the painkillers & steroids can make you moody!! Won’t go on. Hopefully this will clear up soon. Enjoy the rest of the summer. X

Sorry yore in such pain.I also have back spasms recently started.

Make me cry out.

Is it ra causing them ?

Vixen2 profile image
Vixen2 in reply to Flipper12345yellow

Hi Flipper. Now i’m not so sure it is RA causing my awful back pain. I have bursitis in my left shoulder too. Just cannot lie on my left side. Agony. But the back pain. Could actually be kidney stones. I went to a&e the other day. I coukd hardly walk. Horrendous pain. The triage nurse sent me straight through. I was in tears. Oc course crying hurts too. They did loads of tests. Urine, blood, 2 MRI scans. Chest xray. They came back. (After a 7 hr wait) & told me they’d found 2 kidney stones on my left kidney. Yet the awful pain i was experiencing was on the right side of my back. I know pain can radiate to other parts of the body. The Dr thought it was strange. They gave me loads of painkillers. They gave me diazapam in a&e to stop the spasms. Voltarol & 2 oral shots of morphine. I could still feel the pain. I’ve been referred to a kidney specialist. I’ve been on Co codymol every day. 3 times a day for a week. At the moment i feel very sore. Which is alot better than the awful spasms. I’mve got an appointment at Moorfields Eye Hospital today. I have Iritis & Glaucoma. I’ve been going there as an outpatient for about 25 yrs! I’m dreading sitting for long periods. Even if you have an appointment. You have to wait 3/4 hrs. Anyway. Maybe you could be checked for kidney stones? Good luck. I know how awful the spasms can be. Xx

Flipper12345yellow profile image
Flipper12345yellow in reply to Vixen2

Wow , you've been through the mill.Do hope you get real relief ASAP.

All the best .

Vixen2 profile image
Vixen2

That’s not the half of it! But thanks Flipper. Hope you get some relief too. Ps. Have you tried a heatpad, or an icepack on your back? Or voltarol gel. They can slightly ease the pain. Good luck x

Flipper12345yellow profile image
Flipper12345yellow in reply to Vixen2

I've been given gabapentin low dose increasing very slowly. Not much effect yet.

Vixen2 profile image
Vixen2 in reply to Flipper12345yellow

I know it takes a while for things to get into the system. I also have an infusion every 6 weeks. Infliximab. It’s brilliant. I can hardly walk without it. Hope your back settles soon. I always say this. There’s nothing like getting into bed. A big bowl of soup, buttered bread. Lovely cuppa, painkillers & a really good programme on my iplayer. Then i settle down under my duvet & wait for the painkillers to do their job! Better go. Bloody Moorfields soon. Hope your back pain’s sorted soon. In the meantime. This forum’s great. We all know how crap pain is on here!!!!! X

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