Advice : Hello you lovely lot advise needed . I’m... - NRAS

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Laceygreen profile image

Hello you lovely lot advise needed . I’m feeling very low and Teary, I’m struggling with my knee as I need a full knee replacement ( I had half a knee 3years ago and it’s failed) I’m on benepali started in July but struggling with my hands , they are very swollen and can’t use my right hand . I’ve been on steroids for a while it’s the only thing that helps me but they say they are bad for you. I’m supposed to be going on holiday in 2weeks ( been cancelled twice) but the way I’m feeling I just want to stay in bed . Thankyou for listening to me moan x

31 Replies

Hello. Well good point is you have reached out and I was very t eary a couple of weeks back and you need people that get RA to go you are doing ok.How long have you been on Benepali and can you call your Rheumy Team to see if they can help.

I am due to have both knees sorted but I know its going to be yonks before sorted and so have days I limp badly or I walk and its agony. Re hands mine swell a lot I do ice packs for 20mins and a warm shower too sometimes helps the whole body.

Re the holiday - can you steroids be upped for week before and during maybe this would help you thro? Speak to GP and again RA team.

I think many on here will say re holidays if cancelled or done it but re jigged a few things to keep them going.

Big hugs D

Laceygreen profile image
Laceygreen in reply to Deeb1764

Thankyou for your advice I will speak to the Ra team again tomorrow but it’s always a answer machine.im not sure if they will give me anymore steroids as I’ve just come off them 2weeks ago but it’s the only thing that works x

Deeb1764 profile image
Deeb1764 in reply to Laceygreen

I have been on them non Stop almost since diagnosed as my RA drugs taking an age to work or don’t suit me. Without steroids life would be even worse. If you are in pain. And Benepali not kicked in they should be assisting you thro this process. Keep Pushing or speak to your GP as mine sorts the steroids not the RA team x

Minah profile image
Minah in reply to Laceygreen

Do you have rhumotied nurse helpline e mail or your rheumatologist, s secretary number to contact because I had an terrible experience mot able to record the message and it took a month to arrange a steriod knee injection as I could not get up from bed for my necessities or making food. I even tolerate painkillers which could relief me I had to cancel even a dinner with my husband, my blood reports were not accessable, so all these make you very teary because you already have compromised a lot to accept this disease.,Thankfully went yesterday for knee injection and there I burst in tears with all the mix emotions .Doctor consoled me as what he could do in his best and he also suggest me fir knee surgery but it's a long queue to be waited and it's another stressing suition it would me how to handle alone without any other physical support but let's see and wait .

Laceygreen profile image
Laceygreen in reply to Minah

Thankyou for your reply xx

Bless you sometimes Benepali takes 12 weeks to get in your system it took me about 4 months it’s horrible when you can’t see any improvement but hold in there give your rheumatologist a ring and tell them how your feeling they may give you another steroid it’s true there not good for you all the time but may bring you some relief for a while hope you start feeling the benefit soon enjoy your holiday rest let us no what happens good luck x

Thankyou xx

I'm sorry you're feeling so low, it's exhausting being in pain and just feels endless doesn't it. Not being able to do things is so frustrating, and not knowing what will happen from one day to the next feels very scary. I'm trying to really take things one day at a time at the moment but it's hard. Hang in there 💙

Laceygreen profile image
Laceygreen in reply to snotts

Thankyou xx

Sorry to hear of your situation. I've been on steroids for 2 years continuously and 5 years intermittently. Yes, they can cause issues but so can unmedicated RA, and other meds have side effects too.Holidays are great at promoting wellbeing it might be worthwhile speaking to your team and explain your situation regarding upping your steroids temporally to let you have a reasonable break and get a wee boost.

Best wishes.

Laceygreen profile image
Laceygreen in reply to Mmrr

Thankyou for your reply

Hi Laceygreen - sorry to hear of your pain - I, too, struggle with my left hand and found my hand brace a godsend - I am due a steroid injection on the 26th of Oct and feel apprehensive as told could make things worse.

I would recommend the hand/wrist brace. Take care, and wishing you well 🙂

Knip profile image
Knip in reply to Hessie5

Agree with you Hessie5 about how helpful the wrist braces are...even if stopping us from inadvertently using the affected joints...and causing us to yell 'ouch'!

Thankyou I will ring them tomorrow x

Hugs to you. Sounds like steroids messing with the head/emotions. 😑 Did for me but I needed them to get out of bed. I hope you can get away on that hol as it will lift your mood and make the difference. I’d ask if you can get a review/chat with your rheumy nurse/rheumy. Make sure they know about your hands. 💗

I will be ringing my rheumy nurse again this morning to see if they are anymore closer to getting me something to help me. Especially in my middle finger on the right hand, Ask for injections into that knee and see if that helps. xxxx

Hi laceygreen

Sorry to hear things are so hard for you. Sending hugs and lots of comforting thoughts.

I hope you can enjoy some time away.

Take care

Can you ask for an emergency appointment as you are so bad.I gave been on 10mg steroids since 2012.Always asked to replace them or help me reduce and always told I am only on small dose.Without thou I wouldn't be able to open my hands etcMakes you miserable been in pain.You want to enjoy your holiday so ask for more help at rheumatologist

I hope you make your holiday, sounds like you really need it. If you can't inject ask your team to change meds, ask about options available to you, and keep on about your op, and hopefully you should get it soon. Good luck. x

Sorry you are feeling so bad just now. Perhaps a call to your GP might be in order. He may give you something to get you through your holiday. Good luck.

Lacey, go with the advice given on here...ask for steroids to cover your holiday. When steroids are stopped there is often a sudden down period. It could be worth you trying the special wax, (try online) which, when warmed in a basin, is a good 'bath' for putting your hands in before wrapping them in a thick hand towel. It really does relax them and helps to ease the pain. My heart goes out to you but hang on in there. I hope you get some help and get away for a bit...it can lift the spirits so much if you think of it as a time when you can just relax and let go. Take care.❤️

Neonkittie17 profile image
Neonkittie17 in reply to Knip

👏🏻 Great advice that I echo. The oral steroids will give a really good reprieve to be able to enjoy a holiday, and when my hands were ar their very worse a couple of times over the years I used to go 3 times a week for the wax hand and arm baths. Right up over my elbows too. The hospital was five mins drive away so easy to do that but yes it’s worth it to get the relief to buy a small wax hand bath or try get in on the hospital sessions of those with the physio. .

Knip profile image
Knip in reply to Neonkittie17

Exactly the same with me NK. The wax is very helpful. Take care.

Neonkittie17 profile image
Neonkittie17 in reply to Knip

I haven’t had need for it for many years but I’d use it again if I found my hands painful again. Take care too.

Been the same i.e. teary, low, feeling useless in so much pain and no strength in shoulders, upper arms, and hands.Had f2f with RA nurse on Monday. Result 3rd steroid injection for this year.

Future addition of sulfasalazine to already taking MTX.

I use warm showers to release aches and pains, and gel pads warm in my case on shoulders.

Some times put hands in dissolved epsom salts cold water, and feet in epsom salts warm water.

I also have regular reflexology and neck, shoulder and back massages.

I can call RA advice line and they respond same or next day to discuss a solution.

Sending virtual hug and keep going forward albeit slowly. :)

OMG...you sound like ME! My right knee has been KILLING me! I never knew knee pain could be just so bad! In fact, I sort of thought it was ALL IN MY HEAD but per my Orthopedic Surgeon..it's not. It's real and it's horrible. Nothing helps me so if there is some magic pill PLEASE do tell! The ONLY option (mine also) is to just stay off it, look forward to when it's fixed. Oddly, my hands and wrists ALSO are swollen but I think (in my case and maybe in yours) it's because I am using them more than ever when I walk. I hold furniture and crutches which puts all kinds of weight-bearing increases on both my hands. Are you using crutches? I found these wonderful "forearm" crutches that help relieve ALL the pressure on my hands..Could you use these maybe?

FORARM crutches

I am sorry to read your message and that you have been feeling teary. Apart from your medical help, I can only offer some solutions which have helped me. I have been told that I need a knee replacement but it swelled up like a tree trunk recently and I couldn't walk on it. I was in such pain that I went privately and had a pain killing injection. Since then it has been almost painless. I know this is not a permanent solution and I will book the total knee replacement soon before the effects of the injection wear off totally. I am assured that there has been great progress in knee replacement today and that most people can lead a new life afterwards - so get that booked as soon as you can. I am also having pain and stiff joints in my hands but I massage the joints in my hands (and knees) with Magnesium Gel by BetterYou which has effective magnesium absorption and I also take a Turmeric (Curcumin) Capsule with Black Pepper very day. I know these are not miracle solutions but there is research which says they can help and I do believe they help me. The other thing I want to say is that if you are feeling low which a lot of us are at the moment especially after the difficult lockdown period and isolation, that meditation can be very good for you. I was recommended an App called Ten Percent Happier. It's very calming and relaxing! You may like to give it a try! Take Care x

You're welcome and a lot of us do it at times. I wish you well.🐕🐕

Hi Laceygreen. Im sorry you are feeling flat and a bit down about everything. If I could reach across the world I'd bring you a beautiful bunch of carnations and roses in pinks mauves and whites. Then I would make you a nice cuppa (but I would also offer you a brandy just for fun!)Totally your choice! Thinking of you and hoping tomorrow brings a brighter day. 💐 Xx

That’s so very kind of you🌹

P S I am noticing that we ourselves need to kinda be a bit pushy sometimes just to get the help we need. When we're feeling flat its harder to do, for sure. But try to follow up and let them know what you need so you can enjoy your holiday. Your body, your life. Good luck with all.

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