Don't know what to do !!

Hi everyone .. I was diagnosed 4 years with RA .. I am currently on Iv Acterma and I have tried most DMARDS and biologics but had to stop them due to side effects or that they basically stopped working! I have had plantar facisitis since May so have really been struggling walking and have been seeing a physio ..now my right knee has become extremely painful and stiff and I am hobbling to get around and can hardly walk any distance . Which isn't good as a work fulltime as a ward sister on a busy stroke ward and stand for upto 10 hours aday !! My whole body feels like it's flaring up and every day is a battle . There might be a possibility of a promotion at work but that would be mentally more stressful and I worry that I will end up of sick and let my team down .. I just don't know what to do and normally I don't let it get me down as I also have two children to think about .. I know I should get in touch with the RA nurses but I keep thinking its a flare it will pass but how long should I carry on hobbling about !! I don't want to go off sick as I worry about my job but at the moment I am not a good advert for the NHS hobbling around !! Lol

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  • you have prob heard it all before but i would as soon as you can get hold of your ra nurse, that is what they are their for, and yes you do need to take it easy, but with a job like yours flower you will find it hard, can you try to take it easy between shift, how old are your kids? can they help you?

  • Thanks Gwen .. Yeah I know I should get hold of the Ra nurse can't carry on like this .. I am trying to do very little on my days off .. My husband is good and my boys are 16 and 12 so at least there not little ones !! Even doing nothing and resting I still feel shocking !! Maybe l need a steriod boost !!

  • it sounds like that might help, the boys are old enough to may be help you, my o/h is good too, they are worth their weight in gold, men at times, but never let them know it will go to their heads lol

  • It's so hard to admit you need help, isn't it? Even when intellectually you know, it's so hard to accept it emotionally.

    I'm sure it will be easier to make longterm decisions when your present problems are sorted out, one way or the other. The problem with this wretched disease is that it rarely, if ever, goes away by itself!

    So I hope you contact your ra nurse asap, and that you get some relief soon. You are coping with such a lot, but you do need to look after yourself as well as the job and the family!!!

    Best wishes. M x

  • It's so hard to admit you need help, isn't it? Even when intellectually you know, it's so hard to accept it emotionally.

    I'm sure it will be easier to make longterm decisions when your present problems are sorted out, one way or the other. The problem with this wretched disease is that it rarely, if ever, goes away by itself!

    So I hope you contact your ra nurse asap, and that you get some relief soon. You are coping with such a lot, but you do need to look after yourself as well as the job and the family!!!

    Best wishes. M x

  • I echo the others. I have failed to tolerate three DMARDs now and am off all drugs apart from Levothyroxine and Amitriptyline. This makes me feel a real failure so I only talk about my symptoms on here and to my GP and rarely tell my husband or sons how I feel anymore.

    They don't seem to notice much anyway as have got used to me hobbling often and having to sneak up to bed for day time tests most days. I really don't know how you do such a responsible job that keeps you on your feet such a lot and also have relatively young family. Hats off to you for being such a brave warrior!

    But on the other hand you need help to keep such an exhausting life from disintegrating so I really would speak to your RA nurse as soon as possible. I can see that drugs have become an even bigger issue for you than they have for me but a regular steroid boost and getting more proper rest sound like the best way forward to me. Can't advise on the job promotion - maybe you could speak to your rheumatology team about it and see what they advise because they see first hand how this disease can progress?

    Take care, Twitchy

  • Thanks everyone for your kind words and support .. I will get in touch with the RA nurse after the bank holiday and try and rest up as much possible in the meantime

  • When you see your RA Nurse ask about getting some orthotic insoles made they make a big difference to plantar fasciitis.

  • I am having a podiatry appointment soon to make a semi (heel) and a full orthotic to try help with heel problems .. not PF but something very similar affecting my heels/ankles. Maybe I have some PF too . .my consultant says it is PF and is presenting itself as under heel pain but I think it is more under heel as no pain in the under foor muscles (touchwood!) My husband had sports injury related PF recently and visited a private physio and he advised rolling the sole of the foot over a tennis ball and also ice pack treatment (I can recommend "Therapearls" micro beads small pillow-packs unstead of ice cubes) Can you see a rheumy physio soon? .. I am goign to see mine shortly. He helped a lot last year with some gentle ankle traction also to free up seizing tendons. I also have some shoes by Clarks Unstructured range which have a more rigid insole (better than the slim ineffective orthotic I was made two years ago at hospital .. needs to be more rigid for me) which are very comfy, as are Rieker shoes with shock asorbing soles and Fly of London have many shoes with their very supportive and comfy rubbery wedge, trade mark sole . .. not all of theirs are high shoes. Their sizing is generous .. for the wider foot, whereas Reiker more for a slimmer foot and Clarks Unsructured shoes usually in D, E, EE. Hope your foot is soon feeling better. NK x

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