NEXT STEP - PAINFUL

Hi everyone, hope you are having a good day.

Just thought I would give an update. Haven’t managed to get in to work today, feeling very tired and sore after having my joints squeezed, bent and twisted every way yesterday. Saw my Rheumatology Nurse and was so pleased for this appointment as I am beginning to struggle. More joints have decided to join in, some are very painful and hot. I had my knee drained recently and it was such a relief to be able to bend my leg again and move around easier. Although it isn’t as swollen now I have started to get increasing pain and something at the back of the knee feels as though it is clicking and catching, hard to describe, and I am unable to kneel down as it feels really sort of bruised. The Nurse said there is some swelling and it needs investigating further, not sure what she means by that but she is going to report back to the Consultant. My right wrist and little finger are swollen and sore and she thinks they could be aggravated by using my stick so wants the Physio to check and see if I need a different stick or some sort of joint protection, I have an appointment next Thursday so will mention it to her then. My neck and shoulders are also playing up again and turning my head can be difficult at times so not sure if she will start acupuncture again or just exercises. My left ankle has now decided to join in too and the joint at the base of my big toe, it is extremely painful after walking for around 20 minutes so again this will be reported back to the consultant. My liver test result was slightly raised but it has been decided to increase the Methotrexate from 15mg to 20mg to try and get things under control. I also have Sulfasalazine, Omeprazole, Folic Acid and Co-Codamol. They have just now added in Naproxen, two twice a day. I have read the leaflet on Naproxen and it’s quite scary reading, but if it helps it is worth trying. What are your feelings towards this drug, has it made much difference to how you feel. I am just hoping that the increase in Methotrexate and extra drugs doesn’t put me back at square one with the Migraines it triggered when I first started on it, as I was beginning to feel ok ish taking 15mg, the Migraine and brain fog had certainly reduced. Well I will try it and see. Waiting for another workplace assessment as I moved to another office recently. I have had another Occupational Health Assessment but it feels like it has been a waste of time, my Line Manager isn’t acting on anything they recommended, she just said to let her know when I am not feeling good and she will note it against my targets. She also said she will have to look at what I am allowed to take off as she has to consider business needs and isn’t going down the route of restoring attendance yet but if I am going to be ill on a Friday after taking my Methotrexate Thursday evening then she needs to know how long this is expected to last. I told her that I always go in unless I really am unable to. Having said that I have only been off two Fridays at the start of my Methotrexate. I understand she has to think about the workload and has to follow policy, but she could show some concern for me too, or am I being too touchy? For once I am being selfish and thinking about me and my health. Sorry just feeling a bit ‘off’ today.

Take care everyone. Hope you are pain free. X

5 Replies

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  • It isn't up to your boss to decide when you need time off work because you are sick! They also can't penalise you for having a chronic condition which needs treatment. Maybe Occ Health could clarify this on your behalf? You might find yourself needing to go above her if this continues to be a problem.

    On the other hand, I do appreciate how awkward all this stuff can make working relationships. Could you change your MTX dose to a Friday - assuming you are off at the weekend? As far as the law is concerned, though, you shouldn't be having to organise your treatment to suit your boss.

  • I feel for you and I know where your coming from, as I am in the same position at work as you. I am a Dental Nurse.I am too ill really to carry on nursing as you do need to be quite fit to be able to run around all day.

    My boss is so money minded ,basically he told me yesterday if I can't keep up then I should change my career .in other words leave. It makes me so cross that bosses think that we take time off just for the sake of it. As if anyone would choose to have RA?

    I am now looking for a receptionist position somewhere else because I will not work for someone so insensitive. To be honest , at the moment I am too ill to care what anyone thinks.

    Rant over,like you I am feeling fed up today.

    Xxx take care.b

  • Yes it is difficult to know what is best to do. I take the Methotrexate on a Thursday evening as this is usually the day I see the Rheumatology Nurse or Consultant and so when I first got it I started that evening. I discussed this with the Nurse and she thought Thursday was a good time so that if it did have a negative effect on me then hopefully I would be over it in a couple of days and have a day free to do household chores, shopping or just rest ready for the week ahead. Hopefully as I get used to the increased dose I won't need time off again. I had the first two Fridays off when I first started on Methotrexate so I don't consider that excessive. I won't let her dictate to me about my health and if she continues I will speak with either the Occupational Health, the Line Manager's manager or my Union Rep.

    I hope things settle for you, heathersmum, why should you be made to feel that you have to change jobs because of his attitude. It makes me so angry too. Let's do what we know is right for us, and listen to what our body is telling us, our health is more important. I'm sure others on this site would say the same.

    Take care. X

  • It does make me angry when employers don't understand. Having been a boss and an employee you adapt and work with people, not try to get rid of them! I always take my mtx on a Saturday. I am one of the lucky ones that it doesn't affect too much. I sometimes get tiredness and a foggy head but that's about it. So I can take it easy on the weekend. I have been taking naproxen since I was first diagnosed, so about five years, and again so far so good. No side affects. All the best to you and I hope things settle down.

  • Thanks. I will see how the next dose goes and if necessary rethink which day to take it, maybe Friday evening. Pleased to hear the naproxen helps you. Just really tired and cold today. Hopefully tomorrow I will feel better. Hope you have been feeling ok. X

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