I'm a 44 year old woman who works full time with 2 children under 12. I work in the NHS at director level and have never been off sick in 22 years so my recent diagnosis of Palindromic Rheumatism has come as a bit of a shock to say the least. I have now been off for 8 weeks and the excruciating pain, swelling and lack of function continues to move from joint to joint. Today it's the turn of my left knee and left wrist. Due to see Rheum consultant again to discuss hydroxychloroquine but I'm really worried about side effects as well as time it will take to see any effect, if any. I need to get back to work and be a mum to my kids again. Has anyone had such a long lasting and severe flare which has burnt itself out? Am hoping this will be me so I don't have to start treatment. Any advice?

14 Replies

  • Hi, I have Rheum Arthr (JIA from childhood), Im 43 and have an 8 year old and a 1 yr old dog who is worse than a toddler!

    I work full time at exec level with travel and have periods where my flares really do flare but then I hopefully get control once we get the meds sorted - currently well thank goodness. I can not cope with a flare on its own and now know for me, I need to get on meds asap, as they may need changing etc, so for me the sooner the better.

    I so understand the days when its so painful/difficult to get up/clean/dressed/kids/food/school run all before 8.30am then expected to work full day with high stress then get home to house/kid/dog/food/relationship challenges...I am v grouchy at the best of times when Im sore - awful when im in flare.

    Being honest, its as if we over compensate in the long-term to keep the job/career/income/identity etc - the risk is we keep going til we burn out which isn't sustainable or we have so much time off that we risk losing our career. both ends of a tough spectrum and I describe it as a swinging pendulum.

    For me, working to achieve balance is what I aim to do - not easy `tho, esp when we are flared and uncontrolled. You should be able to push for treatment - I also understand reluctance to take the meds re toxicity/side effects - but for me I have learnt the hard way over time and now I need access the best available and quick! Tips include phoning the consultants pa/secretary, as many times as needed, asking for double appointments, taking someone with you to appointments if needed, utilising the resources and wealth of info via NRAS website to give u the info basis u need to hep make informed decisions. I know its often the nurses that can really help so building relationships has been valuable.

    I guess u have kept your employer up to date. I also guess u are under pressure to return to work. Have u considered working on a planned return to work basis - perhaps over 3 months building up - then u can review as meds may be started and kick in - or not... One thing I KNOW is we do become perceived as a problem by employers when we are ill.

    Personally, I am glad I have managed to keep working and keep going, feel less pain and more active in life as a result. I know this helps my personal relationships too...but I have had to fight too much and that's exhausting in itself. Fatigue is as debilitating as the RA for me. I do pilates and have done for years - this helps me in a number of ways - but I know how hard it os to built motivation when its sore and Im shattered...

    Think about september time - what needs to happen for u to feel more in control and less painful by then? What are the things you can do - with others - to gain control again?

    youre not alone

  • Pollock.......thank you for your advice. Sounds like you are moving forward positively. The team I am in charge of have been really understanding as is my line manager. I guess this is more about loss of identity and value. Plus I'm a bit of a control freak so the unpredictability is doing my head in! I feel I ought to take up the offer of treatment but am worried about the side effects. A bit of knowledge can be a hindrance sometimes (I'm a physician!) and people assume that you are always wearing your professional head so expect you to make objective decisions. Having said that my consultant is accessible and understanding. I'm grateful for the time you have taken to reply to me. Best of luck. X

  • Hi Pocohontas1

    Sorry to hear about your diagnosis and your sore joints. Welcome to this site. I too was a busy nhs working when diagnosed with RA aged 26.

    Unfortunately the drugs do take a while to work and it's frustrating but you have to be patient. Make sure you take regular pain killers as 4 hourly is better than waiting for the pain to become moderate. Nras and arthritis care have excellent info on pain management on their websites and leaflets in clinic. Remember Nras have a helpline and a network volunteer scheme if you want to talk to someone on the phone. I would definitely get referred to occupational health. They were my biggest allie and remember your condition is covered under the Equality Act. Try not to stress about work as it will not help your flare one bit. Absolute worst case scenario is you have to give up your job, like me, and it turned out to be the best thing ever. Keep positive, it's very early days and do tell your rheumy team what your feeling because if they don't know they can't help. Come back on here anytime.

    I was on hydroxy for years and never had any problems at all, I took it all the way through my pregnancy. Good luck!

    Kiki x

  • Wow Kiki, your reply has uplifted me. I'm sorry you had to give up your job but I'm so pleased the hydroxy worked for you for years. I'm sure you know if you worked in the NHS that doctors make the worst patients! Will take my meds 4hrly for sure.....I think I've been in a bit of denial till now and have pretending this is not happening to me. Thanks Kiki for your advice, and my thoughts are with you x

  • I was in denial for years and years so don't be hard on yourself, it sure is a journey that sometimes feels like a journey. I always try to think positively and when that's hard I think "I guess there are much worse conditions to have".

  • It sounds like you are experiencing quite a nasty flare and it may be worth trying to get into see your consultant or specialist nurse sooner then your scheduled appointment (you don't say when you are due to see your Consultant). Getting your disease under control as soon as possible by hitting it hard with DMARDs will be the best course of action then if brought under control it may be possible to reduce treatment but avoiding taking medication is very risky for a good long term prognosis. If you would like to talk to someone who has "been there, and done that" , you can call our helpline 0800 298 7650 and we can then put you in touch with a NRAS trained telephone support volunteer. Also visit the website for lots of information about treatments etc.

    While NRAS focusses specifically on Rheumatoid Arthritis the treatments are very similar for your condition.

    NRAS here to help you every step of the way.

  • Clare your advice and support is really appreciated. I will contact the helpline for sure. I'm due to see the consultant in 2 weeks which I think might be a good thing as it gives mr a chance to see if this might improve or not before I see him. I'm still hanging on to the tiny possibility that I might be one of those 15% of people for whom PR burns itself out on its own. Wishful thinking maybe......

  • Hi Pocohontas, listening to you was like thinking about myself, unfortunately when our careers are at senior level we are control freaks. You being a physician makes it worse, but in answer to your question. Yes the arthritis moves about, in the beginning it used to be the odd joint or the skin on my hands then would disappear for 6 months. However it then became more regular until one day it stayed, unfortunately by then it was in 70% of my body. By not taking the drugs I ended up with a substantially longer period of excruciating pain and a longer period off work. I like many people on here were initially terrified of the drugs and we still are, but for me it was better than the alternative, it allowed me to continue in the career I loved. Plus as you will know the damage that this disease does to your body during a flare is irreparable. I have now had this disease for 25 years but I know the drugs prescribed by my specialist have stopped substantial damage and allowed me to continue with my life.

    I hope you find a way forward, I think the worse part of this disease may be the realisation that we have it and in many cases it's not going away. I promise you will learn to compromise and adapt my friend and you can continue with your life just with some compromises.


  • Thank you Shazbat. You have described how I'm feeling to a tee. Reassuring that treatment has helped you. All these replies are helping me come to terms with things and make the decision to pursue the meds. Good luck and all my best wishes.

  • Hiya pocohontas1 & welcome from me too. Sorry you've needed to find us but I can assure you've come to the right place for support, we're a great bunch whether it's needing help, advice, experience or just needing a moan we understand!

    I would think as you're Rheumy is considering hydroxychloroquine for you you're not going to be able to escape! It was the first DMARD I had & it controlled me along with NSAIDs & the occasional short course of steroids etc for about a year. I did have one or two issues with it but nothing really bad, more lan inconvenience, headaches & light sensitivity but it did a really good job on tackling my RD. You'll know that drug companies have to list the side effects found when trialing drugs & the likelihood of having any but the common ones are unlikely but they nevertheless have to publish them. If I can make a comparison, I've been taking MTX 6 years now & doing really well, I feel a little more tired & have less appetite the day after I inject, quite acceptable for the benefits I get from it but the listed side effects are quite scary & if I was newly diagnosed I'd question it for sure but I've got so used to having to take serious meds now little concerns me now. So you're no different to many of us, I would think you've not needed disease-specific meds before as such a good attendance record so it's little wonder you're questioning your diagnosis but your joints are telling you that they need something. Once the HCQ starts working you'll start to notice subtle differences but you'll need a little patience as it does take a while for it to reach potential & if your Rheumy feels it necessary maybe a steroid injection & an NSAID would help until it does. They do differ in how they treat but hopefully he'll appreciate your situation & prescribe accordingly. You'll still be you, just a different you & you'll learn to adapt & listen your body.

    I hope your Rheumy understands your concerns & can allay any fears you have. We're here if you want any personal experience so ask away as & when you need to, there'll be someone who'll know or relate to your questions.

    Keep in touch & let us know how your appointment goes. :)

  • What a supportive and lovely response Nomoreheels (love your username by the way!). Seems a very supportive bunch of people indeed, exactly what I need right now. Thank you and I will of course let you know what happens. Xx

  • I do tend to go on I'm afraid so well done for getting to the end of it!

    We are here for one another, that's the wonderful thing about this site. We know how it is especially when nobody else does & my username is often commented on because it's something many miss wearing I suppose. I'll keep an eye out for your update. x

  • I hope you got sorted

  • Hi Pollock and everyone. Saw the consultant. I have had 2 more flares since I was last in this site (one in my jaw, one in the wrists) which is SO much better than before. Because of that we agreed that I'd start treatment if I had a further severe flare in the next month. I am hanging on to the idea that this might be burning out. He isn't so sure...

    PLUS I am now thinking that when my wrists are affected it is actually due to RSI not the palindromic rheumatism. The symptoms are a bit different and tend to come on after lots of activity, which apparently doesn't happen with Palindromic Rheumatism. Hope you are all doing ok and that each day brings with it some sunshine for you.


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