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40's RA...not funny :(

Hi all

I'm new to this, I'm 44 and was diagnosed with RA wrists feet and most jointy places in Nov/dec last year, started on Meth inj ..took AGESSS for any benefit, I was a bit underwhelmed...think I had high hopes, added in Hydroxychloroquine Feb and still needing celebrex 200mg twice daily and codeine..tried a few times to cut back on pain relief and my pain is immediately worse again...I was so active before this, not particularly into sports but a non-stop person, gardening etc. with a busy job; I'm a nurse specialist. There is no doubt I am a hundred times better than I was, but out of nowhere sometimes I am just exhausted. I did used to have a lot of tiredness getting used to the meds, falling asleep all the time etc, but there definitely is an improvement, however once/twice a week at least im done in, could this coincide with injection needing it.?

Hands and feet are cold a lot, i'm shielding so have the foot warmer on all day everyday day and night...yep through the hot week we had too!, its ridiculous

Just wondering really other peoples experiences and whether this is stuck with me, sometimes I can't quite believe it and think they have got it all wrong...my bloods were fine apart from ESR, and was diagnosed with xrays.

Hope all ok during this crazy lockdown

Ast

Comments

  • AlanMAlanM Posts: 42 mod

    Hi @Ast

    welcome to the forum, it's good to see you here.

    You have Rheumatoid Arthritis in your wrists, feet and elsewhere. This is a relatively recent diagnosis and, as you adapt to the various treatments and medicines, you're also struggling with the fatigue you experience and the nature of any improvement.

    It might be helpful for you to talk to someone on our Helpline staff. Your diagnosis is relatively recent, it's a complex condition to manage and with the additional challenges of lockdown, it could be worthwhile to talk things through and see what other information and support you could benefit from. Calls to the Helpline are free on 0800 5200 520 and it's open Mon-Fri, 9am-8pm.

    You may already have spent time on our website but it's always worth looking through news and searching for any topics that might interest you.

    And you will, of course, find many others on the forum who have similar experiences and concerns.

    Good luck and look forward to seeing you here.

    Best wishes

    Alan

  • AstAst Posts: 7

    Hi Alan

    Thank you for responding, I think that might actually be helpful, to understand this condition a little more, and would be good to discuss whether it is wise for me to return to clinical work just yet amidst the covid uncertainties...as I feel like I am guiding my workplace a little with this. There must be so many others in similar situations. I really appreciate your kind words.

    Best wishes

    Astra

  • Best focus on what you can do, particularly what you can do well, I was diagnosed with R/A when I was in my 60’s, so it’s easier for me, I can’t always tell R/A from from old age aches and pains, whilst you know exactly what’s happening.

    The best advice that I can give you is don’t ever give in to it, it’s had the temerity to invade your body, damned cheek if you ask me.

  • AstAst Posts: 7
    Thankyou .. I think whatever age is hard, most days I feel like I'm not going to let it get better of me..I've never stopped working, but have had hideous days..can't believe it really, I suppose. Had a stressful few years prior...few life events an wonder if there is a correlation...stress trigger ... But you're right...I shouldn't let it get me down but learn to live with it.. thankyou x
  • I do believe stress plays a big part in inflammatory arthritis,whether it be the trigger or exacerbating symptoms,we need to be kind to ourselves,stay strong.
  • Btw,I too am working and determined to do so,just having to try and learn to adapt 👍(and treat myself occasionally to some online shopping 😀)
  • AstAst Posts: 7
    Absolutely thankyou x
  • I'm pretty new to this to and I 100% know what you mean about the tiredness. Some days I'll be fine and other days I'll sit down after dinner and that'll be the end of my day. I'll pass out on the sofa and wake up several hours later. The only time I'll wake up earlier is if I've fallen asleep with a cup of tea in my hand (yes this does happen lol). I'll soon jolt awake with a lap full of tea. Reason being because I like to hold the mug for the warmth as like you my hands are cold a lot of the time. It all just depends on how busy I am during the day. It's frustrating but I've just learned to live with it.

  • The pain is destroying at times but the fatigue is just as bad. As one who is relatively near to the start of this journey I try to not have too many painkillers,so am often awake at 3am,have some cocodamol,then struggle to get up for work. If anyone has the answer, please share! The brilliant thing about this forum is that everyone is going through it/understands 😊
  • AstAst Posts: 7
    Hi DonnaLee and kazandNoo
    I empathise... It's hard to know what's new normal navigating this RA.. I can't believe it some days, I think it's improving...run about going yayeee doing everything, and then I'm shattered. I couldn't do what I used to do for work running about on the wards...no way, thank goodness I do more sit down face 2 face stuff now. I feel like I'm a bore as I'm too tired to socialise but that could be natural for 44 😄.. had a really bad couple days this week, wondering if now I've been on metho for a few mths ...is my body needing it by time I get to inj. Day as the couple days before I'm tired and v sore. Perhaps I'm just looking for a pattern an there isn't one...
    I know what you mean about falling asleep...🥱..half the time is it meds, is it RA...BOTH?
    Sorry you waking in pain Kaz that's rubbish...
    It is good having others to talk this through with, hard to explain to people around me, as apart from the odd lump it's not visible is it
    Take care x
  • LilymaryLilymary Posts: 274 ✭✭✭
    edited 19. Jul 2020, 22:59

    Briefly before I go to bed, you need to embrace pacing. It stops the boom and bust that results in a crash. After 3 years of CFS (now receding thank heaven) I’ve had a bit of practice at this you could say - I managed to keep working through it but only just, but I’ve learnt if I overdo it for a while my body is going to make me pay, these days it’s mainly with much worse pain (I have OA), but also exhaustion. It’s deeply frustrating reining yourself in when you’re having a good day, but it really pays off. It’s rubbish how it affects your social life though, but I find it’s best to be honest with the people you know well, and if you don’t know them well, who cares? It’s your body you’re looking after, not their social plans. (Or maybe that’s just me!) prioritising is all part of pacing, but an important part.

  • AstAst Posts: 7
    Thankyou Lilymary for your kind words...I know really and quick to tell someone else to slow down but not do it yourself usual thing... I will take your advice, it is a bit about adjusting mindset ...
    Take care x
  • Hi Ast,I agree,our illnesses aren't often visible so it can be hard for others to understand the level of pain etc. I've been having a flare this week but it will pass (hopefully or I'll have to bother the nice rheumy helpline people) Lilymary is right about pacing,but it's so hard to do when you're a doer as we all seem to be on this forum. She's also right to say no to stuff if you know it won't help you. Fingers crossed your meds start to help you a bit more. X
  • ChrisChris Posts: 15

    Hi Ast, totally agree I have been suffering with OA in my right knee for 3 years now, some days I am great and I feel I can do anything but if you overdo it boy you pay for it the next couple of days the pain can be of the scale. I am 47 always active and full of energy the last three years I have learned to pace myself, its frustrating but there is no getting away from it. When I was feeling good I would not take my pain medications thinking I was doing the right thing but it does not work that way for me, now I take them however I feel this has helped. Stress has a huge impact on managing pain and fatigue be kind to yourself and focus on day to day stuff I find I break my work day down into small goals, I say to myself right lets get to ten o'clock and have a break and see how I feel, then carry on till 12.30 and have dinner take my pain killers and work until 3.00pm if I am struggling I try to sit more and focus on jobs I can do sitting down until I finish work at 5.000pm then home and rest, I find I go to bed early but that's life, its not perfect and sometimes my plans don't work and I have really tough days. I talk to my wife a lot and that helps a great deal. All the best Ast.

  • Chris,I have psoriatic arthritis and you have oa but the rest of your story is very similar to mine. I always felt isolated in my medical stuff until I joined this forum and realised that there are many many others like me. That isn't a good thing but we can share experiences,support and tips 👍
  • ChrisChris Posts: 15

    Hi Kazandnoo totally agree I felt very alone and isolated there were some very dark days. I used to practice martial arts and competed nationally at kickboxing right into my 40`s I trained 3-4 times a week and was one of the fittest students at the club I trained at for nearly 22 years. I achieved my second dan black belt of which I am hugely proud of. The impact of my OA on my right knee has been significant. But this forum and charity has helped me a lot. It is good to share experiences and help others in there struggle. Currently waiting for a partial knee replacement this will be next year now but I will persevere .

  • LilymaryLilymary Posts: 274 ✭✭✭

    Hi Chris, wow, great achievements. I never made it to my first belt! Tore a tendon in my big toe one day during warm up and that was it (I'm not sure it was for me anyway).

    Arthritis doesn't discriminate between fit people and those with quieter life-styles. It can get anyone. My sister has been teaching aerobics for over 30 years and always believed the fitness you gain when you are young will stay with you forever. She had both knees replaced before she was 60 and numerous ops on other joints, and now has polymyalgia rheumatica (but she still teaches aerobics). Her ex-rugby playing husband, who went to the gym every day before work, now has a new knee. I used to do huge trekking holiday (eg Everest Base Camp), and can now hardly get up the stairs 12 years later. True, having great muscle tone helps support the injured joints and does help recovery from surgery, but being fit doesn't mean you're immune to this awful condition. It's really pants.

  • ChrisChris Posts: 15

    Hi Lilymary you are sooo right  ever since I was a teenager I have always kept fit, at 23 years old I completed the Pennine way in 14 days trekking over 20 miles a day, A year later I did the coast to coast in 8 days with barely a aching limb, now I am happy just to get through the day with a minimal pain level at 5, but what this condition has taught me is humility and empathy for  other people who are struggling with chronic pain and restricted movement. I think because of what I am going through it has made me a better and a more understanding person.

  • LilymaryLilymary Posts: 274 ✭✭✭

    Hi Chris, It's a shame we have to go through rubbish like this to get to that point. But then again, many years ago I went out with someone who saw sympathy as a weakness, was incapable of empathy but was equally capable of towering arrogance. I used to think there was nothing wrong with him that a really major personal disaster wouldn't sort out.

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