New to reactive arthritis
Hi
I've been having joint pain and high temperatures since the 1st August. I was put on 15mg prednisolone which helped for a couple of days however all my symptoms soon returned. I was admitted to hospital on 24/08 and put on 20mg prednisolone. My temperature is still rocketing at night, with it being 39.7c last night. They've told me it is reactive arthritis however with the bank holiday etc I'm still waiting on seeing rheumatology.
I'm 29 and have cried every single day. The pain is next level. I'm on codeine, tramadol, paracetamol IV and ibuprofen. I guess I'm just looking to see if it's normal to be in this much pain and have temperatures this high?
Does anybody know what my options might be in terms of managing the pain and high temperatures?
I feel so scared and alone.
Comments
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Hi @JessicaLizzie welcome to the Versus Arthritis online Community. I am so glad you have found us from your hospital bed.
I see 'they' suspect Reactive Arthritis (ReA) is the cause of your symptoms, but you have yet to see a Rheumatologist due to the Bank Holiday I very much hope that changes for you today.
I am going to attach a link about Reactive Arthritis for you to read. Yes I'm afraid pain and fever are absolutely indicated as symptoms of Reactive Arthritis:
secondly this thread might be of interest particularly as one of the contributors @Sandgrownen has Reactive Arthritis and is still active on here.
Finally I just want to reassure you that you are not alone any more. You have found a huge community of people who totally understand what you are going through and will do their best to help you.
Do take a look around the forum if you have time Living with Arthritis tends to be the most popular.
Very best wishes
Ellen.
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You poor thing stuck in hospital feeling so ill😒 I hope you are allowed visitors.
Arthritis is incredibly painful so your pain is something I definitely relate to although your temperature does sound a bit high. Mine is usually like 38.5 ish but hospitals are very warm so maybe.
Ellen is absolutely right. You are not alone anymore we are all here for you.
If the rheumatologist agrees with the diagnosis and it doesn't settle he or she will probably start you on some disease modifying rheumatic drugs. Push to see one if you can that's your best option
I'm on my phone or I'd get you a link to DMARDs although I think there is information in that link Ellen gave you.
Take care
Toni x
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Thank you both of you.
I feel so utterly alone in this. I haven't had a single visitor as I was in care growing up and my friends aren't local to where I live. I'm meant to be starting placement for my MSc in Occupational Therapy in a fortnight at this same hospital but I can't see how I'm going to be able to do it. I just keep crying, I'm worried I'm going to have to quit my course because if I defer the placement then I have to do it at the end of the course and would receive no financial help.
How quickly does it take to improve, or is it all very individual? I'm so glad to have found this forum although admittedly it is taking forever to type a response due to the pain in my hands.
Thank you
Jess
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Jess I am so sorry you haven't had any visitors at all that's awful extra ((())) for you.
We might be somewhere else in the ether but we are here for you now.
Please please do not give up on your course. I was supposed to do OT myself at probably the same age as you, got glandular fever and didnt push it. I ended up being a Social worker and although I enjoyed it it was always 2nd best for me.
Just think what an empathetic OT you will make after this experience.
Oh see if you can do voice to text on your phone. We will cope with typos if they happen.
Bosh who is often to be found in 'Val's Cafe' uses it almost all the time.
Take care and keep asking to see the rheumatologist.
Sending love
Toni xx
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You're definitely not alone, @JessicaLizzie , as you have us.
The good news is that ReA can just go away. Admittedly, it doesn't always but it can and might. Meanwhile a sudden downturn in health, especially one involving a lot of pain, is very scary. The really horrible thing is that anxiety/fear/ panic all make the pain worse. Even just concentrating on it does too although, at times, it's impossible not to. Most of us on here use distraction as a powerful tool.
I hope that, Bank Holiday over, things will be happening for you and that some answers will emerge. Try not to worry about your course. As @frogmorton so wisely says, all this will make you a better O.T. Try not to look too far ahead. Your course people will understand that this is hardly your fault and should make allowances.
You are clearly no stranger to hardship, overcoming problems that others don't have and determination to succeed. That will all give you a head start in dealing with this. Take care.
If at first you don't succeed, then skydiving definitely isn't for you.
Steven Wright1 -
Hi, I'm sorry for not replying sooner. I am still in hospital and just really struggling with being in here.
The rheumatologist has been to see me today and advised that from all the tests etc and the rash all over me that I've got adult onset stills disease and (?) Enthesitis. They're doubling my already high dose of steroids and advised they will gradually wean me off these over months. Then I will be put on DMARD medication. I am really quite scared about the medication and how I'm going to function at home as I have nobody local to help me out. I'm worried that I'm going to get lots of illnesses and infections on the DMARD medication and going to university and being on placement isn't the best environment for viruses etc. I'm worried I may not be able to even complete the course.
I don't know what to ask for upon discharge in terms of physio and anything else which might help? A couple of staff have mentioned physio but nobody has seen me.
I'm so grateful for your replies and although I've only just replied, I've been reading your responses over and over to feel less alone, so thank you.
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Please don't apologise for the delay in replying to your thread I can see a lot has been happening for you.
I am going to attach a couple of links for you one is about DMARDs I hope you won't fear them as much as you do now in time so many many people on here take them and are doing very well. The risk of infection is mitigated by close monitoring by your rheumatology team.
Then there is this lengthy thread about Adult onset Stills disease it goes back some time, but many people have contributed to it including @stickywicket who will explain her connection to Stills herself I'm sure.
Maybe you could consider discussing your diagnosis with friends and maybe the tutors at college who will I am sure want to do their very best to support you studying.
For now I wanted to say you have this community to support you while you begin your treatment I hope you will decide to stay here.
I might also suggest that you consider telephoning our helpline? It's a little late now, but tomorrow morning maybe?
Very best wishes
Ellen.
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Hey, no need to apologise. You are in a tough spot right now.
I hope Mod Ellen's thread will make you feel less alone. I see I made some contributions to it. I was originally diagnosed with Stills. Not Adult Onset as I was only 15 at the time. Mine has now morphed into RA and is well under control thanks to DMARDS. I take methotrexate and hydroxychloroquine it's true they make us more susceptible to infections. I guess they have to when the source of your problems is an overactive immune system. They have to dampen it down. I just do my best not to mix too much with people I know have colds etc. My friends and family know to stay away if they're sneezing. But I don't think I get more colds etc than anyone else. And you'll be well looked after with blood tests, flu and covid jabs etc.
Do you have a personal tutor assigned to you at university or college Or a year tutor? They should be able to help out with advice.
Don't be afraid to ask your consultant or physio about continuing treatment. They should be pleased that you're so anxious to help yourself. And ask about ongoing support.
But, first of all, get much better! Take all the help you can get.
If at first you don't succeed, then skydiving definitely isn't for you.
Steven Wright1 -
Hi @JessicaLizzie so sorry that you haven't any visitors, at least we are your virtual friends checking in with you. I am sure that when you explain what has been happening your course tutors will understand.
I had reactive arthritis some years ago and was put on so many steroids that the pharmacist rang the doctor to make sure that there wasn't a mistake on the prescription. My symptoms eventually subsided to something manageable. I guess what I am trying to say is hang in there, things will become manageable and you will, I am sure, go on to realise your ambitions.
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Just reading your replies is so helpful, thank you for making me feel less alone. I'm so glad to have joined this forum. It's reassuring to hear about the DMARDs. University have been fantastic and I even received an email today from my research supervisor and my personal tutor offering to visit me in hospital. I think it is a case of hanging on in there isn't it? Also reminding myself that although it feels rock bottom right now, I am now able to move my hands and fingers which wasn't possible previously.
Thank you for the links, I will check those out and have a look at the helpline too.
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Good Morning @JessicaLizzie (who is probably unable to read messages yet being trapped in hospital) I was worried about you so very pleased to hear from you.
I am so sorry you have a diagnosis which is longer term than the Reactive Arthritis could have been, The good news is that it should be manageable. AOSD.
Your symptoms will be very similar to all of us with an inflammatory Arthritis. I am on the same combo as Stickywicket and like her don't catch anything more than anyone else. The meds are intended I think to get our immune system in line with other people's but I might be wrong.
Fresher's flu though that you would do well to avoid if you can. I think it's absolutely lovely that you have heard from your Tutor (let him or her visit you then you can share your fears with them) and Research Supervisor. I feel like you are doing this course for me too. Please don't give up and keep in touch with us if you get time.
It really is a case of hanging on in there you will get there I'm so glad the hands are already improving. They will get you on a decent DMARD (or two like some of us) and look after you. In time there is every chance you will be coming on here reassuring other newbies.
I found this for you:
Take care
Toni xx
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Hi,
Thanks so much for your replies. It's so helpful to read and know there's others who get it. I was discharged from hospital on Wednesday however by Friday the pain was excruciating and because I live alone and couldn't move for the pain, I hadn't been able to get a drink/food/meds. A trip to hospital later and I'm home now with morphine. The pain is much much better now, but I just feel so weak and exhausted. Have others felt this? I've tried to Google AOSD but there doesn't seem to be much information about the extent of how it affects somebody e.g the level of pain, how much exhaustion is normal etc. I worry that I'm being dramatic or that the diagnosis is wrong, but this really has knocked me like nothing else. I've never felt so unwell, it's like all my bones are made of lead and I'm trying to move through treacle.
I contacted some old university friends yesterday and explained the situation and they both dropped everything and came to see me. They aren't anywhere near local so I feel both guilty and also so grateful. They brought food and helped clean the flat and sat and chatted. It was so, so nice and my heart feels much fuller. I just feel like I'm paying the price today already - I'm exhausted and aching and weak. I think that was the first time last night that I've sat upright for so long - about 4 hours they were here. Maybe my body just isn't used to it after so long of lying down.
Anyway I'm rambling so will shut up now!!
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Hello again @JessicaLizzie
It's lovely to see your name and hear how you are doing.
I am so glad you held out your hand and two friends came straight over. How lovely is that? You have already obviously been a good friend to them or they would not have come running. The guilt needs to go - just like that gone! They care about you and it was lovely.
Well done asking for support is a huge step forwards.
Yes you will know you did so much yesterday having sat up for 4 hours. All that time in hospital lying down will have made you weak and things are still not sorted out for you yet. We call it payback, but i think it is often worth it.
Before i go I will say inflammatory arthritis is really, really exhausting (as is morphine)ludicrously so and the pain like nothing other than toothache. You are not being dramatic and I do think your diagnosis is probably right.
Pace yourself schedule naps into your day (probably set an alarm on your phone ) and do your best to eat healthily while you wait to start your DMARD(s) and they begin to help you.
Take care
toni x
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Hi Toni,
Thank you so much - it's a relief to hear that it's normal to be so weak and exhausted and in pain. I know that sounds odd but when you don't know what is 'normal' you start to wonder if it's just you being dramatic or if there's something else going on. I do think I've become very weak from being in hospital lying down and just not moving about. I was also mainly lying down for many weeks before going into hospital so my muscles have probably all deteriorated. I'm going to call the rheumatology department tomorrow for some advice and see when a follow up is.
It's so hard to get your head around it all, and then trying to explain the condition to others who have never heard of it when you don't know much about it yourself. You all seem so lovely and I'm hoping one day I will feel better and can reply to other posts and help others out.
Thank you
Jess
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Hello again, Jess. I second all that @frogmorton has said. I often do. She's a wise woman. (But don't tell her I said that😉
It's all been a huge shock both physically and emotionally. I was flattened by mine at first. I was told by my doc to stay in bed except when I had an exam (O-levels) and not to do more than one per day. I had to do all prep left handed as I didn't have enough strength in my right for both prep and fair copy. Muscles are strange things. We lose their strength very quickly and regain it slowly with effort.
One oddly good thing about arthritis is that it sorts out who your real friends are. Your two sound lovely and I'm sure you deserve them. Some people don't want to be around illness or disability. An old friend of ours distinguishes between 'friends' and 'drinking mates'. The real friends value you for who you are not what you can do together. They'll find new ways of being with you. But, what's really good, is that we can still do things for them too. We work out, gradually, what's possible.
However, as @frogmorton says, payback is a constant theme on here. We do too much, we suffer for it. But sometimes it's worth it, especially if we can plan in advance how to make things as easy as possible and try to have a rest day afterwards.
Believe me, you're not 'being dramatic'. This is a 'dramatic' disease at times. May I suggest grocery deliveries? They will help you to eat healthily and not waste any precious energy on grocery shopping. I've had them for years and the delivery people (from the orange supermarket) are lovely. They carry the crates to the back gate, open it, climb six steps and deposit the crates on the dining room table which is just inside the door. If Mr SW isn't there they then help me unload them. People, generally, are very kind..
Have you ever seen these? They might help to describe your situation to others
If at first you don't succeed, then skydiving definitely isn't for you.
Steven Wright0 -
Great reply from @stickywicket and at the risk of sounding like a mutual appreciation society @JessicaLizzie you can trust her advice honestly she's been around a long time and she knows.
We're here for you Jess anytime and I am sure that one day you will be helping other people on here.😊
Take care and keep posting
Toni x
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Hi all,
I've no idea how to tag you guys in posts and I'm meant to be the tech savvy generation!! It never reached me clearly!
I had an urgent rheumatology appointment today and my bloods have shown a lot of issues(?), and my liver is struggling. They're keen to get the inflammation down so from next week I am going weekly to have a steroid drip. Not heard of this before, have you guys experience of this? They are then starting me on methotrexate if my bloods are okay enough. Any tips for the methotrexate?
My friend from my Masters came today and took me to the hospital, wheeled me around, cleaned my flat and even washed my hair for me. I am just so grateful, I've been sat here crying.
I do feel more reassured from yourselves and the rheumatologist that what I'm experiencing is very much 'normal' for the amount of inflammation etc that I'm in. I'm waiting for an occupational therapist to come and help with some bits like perching stools, toilet frame, bath board etc so I can be a bit more independent as currently still too weak to stand for long enough for making a drink and getting off the toilet is a fine art!!
I can't thank you guys enough for replying and giving me suggestions. My head is so foggy but I do keep reading what you've replied so am taking it all in, in stages. I know I'm not the promptest at replying either but all the days and nights seem to blur into one lump of weird time.
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Morning Jess @JessicaLizzie
do the @ sign then the username as soon as the username come sup for the person you're after click return😊
What it does is send people and email prompt that someone has mentioned them in effect you are calling them.
I am so glad you have seen a Rheumatologist and are being looked after so well. Your bloods are all over the place aren't they? I think a steroid drip ought to sort that, steroids being anti-inflammatory.
You will be starting on Methotrexate soon too that's good many many of us here are taking it. Tips? for me my top tip is RESTING the day after so I advocate Friday being the day to take it. It can make you feel a little queasy (I bet you won't mind that too much compared to what you are going through now anyway) so I also take it in the evening so I sleep most of any effects off. For most of us the queasiness can be only while we adjust to it.
If you are queasy there are things the Rheumatologist can give you like folic acid to help. We have had threads talking about foods which helps. I used to advocate cheese and onion pasties, but I am vegan now so Greggs vegan sausage rolls help me being hungry does NOT. Someone once swore by fish and chips - can you remember who that was @stickywicket ?
For many of us it can really really help I hope you are one of those😊
Those bits and pieces from the OT will help so much with daily life and hopefully you won't need them for long if the MTX does it's job.
Take care and keep posting!
Toni x
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@frogmorton i think I've tagged you right?? 😁
Had a call from rheumatology nurses today to say I'm going in next Weds, Thurs and Fri for the steroid infusions drip and then they will talk starting the methotrexate with me.
Community OT are coming tomorrow for equipment and adaptations. Social worker coming Tuesday to discuss carers. It's all coming together!
Thank you for the tips re methotrexate- weirdly the only food I've been craving/remotely wanting to eat lately is cheese and onion pasties!! How strange. Will have to order online 🙂 did you lose much hair on it? My hair has been falling out as it is so don't know what to expect.
I feel like I just need to hang on in there until Wednesday next week and then hopefully I will slowly begin to feel better. Things are going to get better, I just have to keep reminding myself that while I'm lying here counting down until the next dose of painkillers are due.
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Hi @JessicaLizzie Jess you tagged perfectly I was at Goodwood though for the weekend so not easy to post sorry about that.
Gosh you do have a lot going on and yes it's definitely all coming together. The OTs will be lovely as you know. Hopefully once you have your support package sorted life will be way easier.
I will be thinking about your tomorrow when you start your infusions everything crossed that they will give you the kick start you need. MTX has not had much of an effect on my hair to be fair I had a lot to start with though. I imagine your loss just now could be the stress of it all not at all surprising ((()))
You are already wanting those cheese and onion pasties!!! Go for it girl as many as you like yes order them online👍️
I think we've all been in that position counting down the hours until the next pain relief can be taken. If it persists it might be possible o discuss slow release meds instead???
Hang on in there you are doing so well ((()))
Toni xx
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@frogmorton hadn't thought about there being an option for slow release meds so that's definitely something to keep in mind, thank you 🙂
Had my first steroid infusion today but afterwards have been very shaky, sweaty and white as a sheet. Hoping that's all normal as I've been given 0 information on the infusions other than to turn up, and today they didn't give me any info other than it will take about 30 mins. Tomorrow a rheumatology nurse will come to see me while I'm there having the next infusion so I'm hoping they can give me some more info and reassurance, and I think they're going to discuss me starting the methotrexate.
Thank you so much for all your support, I'd have been lost without it 😊
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Absolutely there are slow release options Jess😊. Slow release morphine, my own Arcoxia (anti -inflams) as well as pain patches all worth discussing longer term.
I would think getting so much steroid by IV would definitely do what you said, but gosh it must have been quite scary. That's why they do them in that environment so they can keep an eye on you.
What a good idea to have the Rheumatology nurse for the next one and to get the chance to talk about your Methotrexate starting then too👍️
It's a pleasure for us to support you people did the same for me and so it goes on.
Good luck for today.
Take care
Toni x
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