Hi there. Just got over covid and waiting until next week when I start methotrexate and currently on nothing . I’m feeling cortisone after 3 weeks in knee may have stopped working and the deposit medrone shot seems to have made not a jot of difference . There is an ache with bit of discomfort in my knee which seems to jump around in my joints, hands, feet , other knee and lower back into my bum. I don’t know what’s normal anymore, all I do is cry every blooming day . I’m almost grieving the person I once was, happy, very active and feel those days will never come back. I know all the right things to say to anyone else , but can I do it?, no. Not sure if I can exercise , rhumy said yes but be careful, what does that mean ?. I think I am in flare , even 3 months in then should you exercise ? I go walking half an hour most days . Even if I pop on my electric bike will I damage my knee ( have small cartilage loss) and there’s a flicking sensation ( feels like an elastic band on outside of knee), it doesn’t hurt but I’m worried will I make it all worse. I don’t think I will have anything other than metho next week so how do you get rid of this constant clicking my bones make and ache. I’m so sorry for this long rambling post but these early days are so hard 🥹 xx
I feel like Donkey from Shrek, “ I need a hug” . Hubby brilliant but he’s out at mo
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HappyD34
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So sorry to hear you're having to deal with this - it's horrible but try to believe that it WILL get better once you're on the right treatment. The early days can be horrible and feeling sad and having a good cry is fine; it feels like forever at the time but hopefully you'll look back on this time (as I do) almost unable to remember/believe what it was like. I had a conversation with a rheumatology physio about exercise in my early days and her advice was try it (gently) and see how I felt the next day. If my muscles hurt, that was ok and I could continue but if my joints hurt, that wasn't and I should stop. I started Aqua classes and found them great - still doing them 5 years later. The water supports you so it's low impact and you can go at your own pace. In the early days, I did it very gently and slowly but now I am much more energetic. The best thing is that everyone there is at a different level so you don't feel out of place; a couple of ladies at my classes just float around chatting 😁
Oh thank you so much for replying. It’s just beyond awful and I feel for everyone who has this disease. I shall try swimming but it’ll be in the next couple of weeks. Your rhumy sounds better than mine but it’s early days and I’m clinging on to the words that it will get better. Take good care xx
I fully agree with Boxer. Hydro/aqua classes got me moving, got my fitness levels to a superb place again and made me feel positive. Hydrotherapy has helps me so many times. Hope you soon feel like you again.
Sorry you're having a rubbish time. These days will pass and you will feel better than you do today. I have felt just like you over the last couple of years but I'm still hopeful that the meds will work, we just have to find the right one for us. Be kind to yourself and lean on your hubby for a little while until you feel a bit stronger xx
Hi there. That has made me smile 😊, when I cry next time ( bound to at some stage 😀) I’ll think of you ! . Good advice , just felt like I was going down a plug hole so I must retain some of my old life. As I said to Runrig01 I think I’ll try my bike and see what happens. Thanks for replying and your advice, much appreciated. Wishing you well xx
Yes, days it's not easy but it helps to know it's not just you. I went for my swim yesterday, 60 lengths couldn't walk that well before and was only slightly better after. I was still crippled when I went to get by bloods done. I think I made the older people feel better 😂.
Any type of low impact exercise, like walking, swimming or cycling is good. Strengthening the muscles takes unnecessary pressure off the joints. Unfortunately I haven’t been swimming for ages, as I constantly have skin tears on my legs, from years of steroids. I do have a machine called wondercore that supports me doing sit ups and bridges, which are impossible without the machine, but it is strengthening my core. I also have an electric bike, and find it a godsend, switching it on for inclines, and is absolutely safe to do. Muscles weaken quickly when we do g use them, which will then cause more pain in the joints. Little and often is best rather than overdoing it.
Hi, I love the name if it’s after the band which I too love !. I’m sorry to hear about the effects of steroids on you but pleased you goon you’re e bike. I have one too, just bit scared of going on it because of the repetitiveness for my knee but only one way to find out I guess, I so miss my bike so may try this again, thank you. Thanks for taking the time to reply, wishing you well xx
Yes it is named after the band. I followed them for 40yrs. Got my daughter into them as well, and did the weekend at Scone Palace, which was wonderful. Seen them in many theatres as well, but they excelled in the open crowds.
Covid does knock it out of you …so don’t get too down in the dumps…plus you aren’t on any RA meds ….so you are just starting a journey that will hopefully sort you out. …but it won’t happen overnight.
I found Methotrexate very successful so stop reading the sad stories from those it didn’t suit & look forward feeling a lot better …but give it time….months rather than weeks….it could also depend on how long your post Covid symptoms hang around.
Depomedrone is notoriously fickle….one injection can work like a dream, then the next is no help at all…..so don’t give up on it…..listen to your rheumy team & be optimistic.
Hi AgedCrone . Thank you so much for taking the time to reply and for your thoughts. Sometimes I forget what viruses do your body and as I mentioned to someone maybe I pushed to hard after feeling the cortisone initially having worked. I’m a bit of a bull in a china shop, I thought I was made of Duracell but have quickly learnt I’m not 😃. All the very best xx
Just don’t get too friendly with steroids…they have a purpose- short term.I was fortunate in that they really didn’t suit me…so I haven’t been prescribed them for many,many years & I get through without them.
Covid is like flu, it makes you feel depressed for a while after.
I found counselling helpful to come to terms with diagnosis, being able to talk to someone not personally connected to me was a great relief because I could say anything about anyone and I didn't have to be fair or reasonable.
I'm coming up to my 1 year diagnosis anniversary next month! This time last year I was using a wheelchair, couldn't dress myself, open a bottle, getting in and out of the car was agony and I was up most nights crying in pain. I thought I was dying and if I wasn't I didn't want to live like that. Fortunately for me mtx worked and after about 4 months and a bit of dose tweaking I don't think anyone else would know there was anything wrong. I do aqua jog twice a week, yoga and also a bit of gentle kettlebells, all of which are things that at the beginning of this year I never thought I would be able to do again. It will get better, unfortunately it just takes time 🥰
Hi there. Oh my gosh, you really had it hard, I’m so sorry to hear that but I am delighted that things have improved so much for you. Thank you for your kind words and for replying. I guess it may be a cocktail or two I need but hopefully not. Wishing you all the best xx
Hi I so understand how you feel,as I have had RA for over 20 years and have despaired at times re my old life .However,the new drugs are amazing and am now on JAK meds after trying many others over the years.Am 80 next month but am able to do most of the things I could do without RA ,so I strongly believe there are meds there for us all.One thing which may be of use to you,last year I joined my local free Nuffield Health Pain classes for 12 weeks,mine was in Hertford but I think they are all over the country.Not only did the exercises help with pain and flexibility in my joints,I made new friends,and you get free 6 months gym and pool pass,even to attend aqua aerobics classes which was a bonus.It was all a very positive experience!
See if there is one near you,as I looked forward to it each week,and I still do the exercises I learned.Good luck,let us know how you get on,but believe me it will get better.xxx
p.s.i live alone so have to do everything myself,gardened yesterday and cut down a buddleia,so expecting a bit of pain today,but as long as I know why,I have a rest day next day,without any guilt!!xx
Oh hello there. Wow , a very happy birthday for next month 🤩. Thank you for taking the time to reply . It’s such a huge relief to know so many people saying the same thing re meds and life , it gives me hope. Alas patience isn’t my strong point but I guess I can say it’ll be character building, I have no choice 😁That’s a great idea about the Nuffield. Delighted to hear you are enjoying it and have made friends. All the best xx
Covid can make you feel quite depressed after and you are battling without any meds at mo. The Wren project helped me . The support folk with autoimmune diseases by providing a “ listening” volunteer. Good advice re hydrotherapy-I still do it. Methotrexate works for so many so hopefully you will feel much better. If you are still in a lot of pain get in touch with your rheumy department and they may give you steroids (short course ). Obviously not medically trained and don’t know your history -just what happened to me xx
Hi Mozart, thank you so much for replying, it means a lot. I think I’m just run down as was due to go away with mum for her big birthday and we all got covid . I forget what covid does to you, maybe I just pushed too hard too soon. Thanks for your advice . Enjoy the rest of your day xx
Sorry to hear you are unwell, do you mind me asking how long you were laid low with this recent covid,I am due to retest tomorrow, but feel terrible although not bed bound. My rhumy nurse says that the longer you are on a higher dose of steroid the longer covid takes togo,currently on l0.g,mnormal dose 5.m.g.
Hello there, thank you for your kind thoughts. I thought I had recovered well . I’d say I was feeling terrible on one day ( that’s when I tested) and probably the day after but I took antivirals and finished them last Wednesday so all in all around 5 days. I had 80mg of cortisone shot in my knee and a shot of depo too . Whether I’m coming down with a chill who knows , I’m just in a very low frame of mind but all the lovely people replying cheers me up. I hope that you feel better soon . Sometimes our bodies just take a bit longer xx
Yes grieving is common especially when feeling so rotten. I'm in painful limited place at present , got an appointment 22nd of this month. It's the feeling of uselessness I hate, but have no choice. In this condition I'm not active or do exercise, can only take pain relief and rest. Probably best to "listen" to your body when like this care for it lovingly, when feeling more able do some exercise, little and often.
I've also been in remission and enjoyed what I could do during that time, knowing this hideousness will arrive too. Hold on to the fact it will ease and while maybe not able to be how you wish , you will still find some joy in things you like.
Oh Happy5 I’m sorry. I hope you get a good appointment and can sort out your medication? Have you been on them long or is it trial and error at the moment? Yes, it is about finding different things too for when times are harder so that you dont feel like you’re lost. Wishing you well xx
Was diagnosed 2012 , started treatment 2013 and it's mostly worked, problems occur when I'm unable to take MTX due to illness, taking antibiotics, Covid vaccine, & boosters. I have a great RA team who find solutions to my needs.
Hi, good to know that meds work and only issues when you fall poorly , let’s hope that you don’t . I am feeling better thank you, whether it was covid fatigue or what or whether just me realising the importance of acceptance who knows. But today is a better day . Enjoy your weekend
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