I have had the worst two weeks of my life, I have managed to get a urgent appt with the rhumy nurse specialist , I have had so much pain in my legs it's been so hard to walk, my shin bone was so bad I could not touch it with a warm face cloth while in the bath,and my knees are aching and when it comes to standing up and have to put weight on them I end up crying with the ache and pain, And I am so mixed up one nurse says who you do not have lupus then when I ask the Doctor he says yes you do have lupus, I do not know if I am coming or going, hope to get some answers next week , I have been taking mycophenolate for a long time, and I am due to have an infusion which takes six hours and then you go back for the second one, but thank gos after this I feel so much better, I am praying I will be able to get it, whith the NHS nearly broke I am praying, thank you all for listening it helps to know their are people out their who know just what I am going through. Every one take care and God bless . Christine.

6 Replies

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  • Sorry you are feeling so bad Christine, I hope you get some relief soon. Xx

  • I am sorry too Chris you feeling bad.Good to hear you will feel better after the infusion. Stay strong praying for you.

  • Christine, I am so sorry you are feeling so bad and have to deal with this illness.I hope you can find answers and hope you get your infusion soon.I dont think it is a nurse's place to overide a doctor and tell you you don't have an illness, that you obviously do.Stay strong..And blessings back to you.xx

  • Thank you so much for your reply, I will keep you all informed after next week when I see the Doctor, Thank and God bless Christine

  • Whether anyone says you have lupus or not, it sounds as thought you have a medical condition which needs treating. Let's hope you get past the nurse to the doctor so he can order the infusion. It's hard to hang in there but remember we're hanging with you.

  • Lots of rest, eat easy digest foods, more liquid, reduce stress and hope you feel better in few days. I suggest you may need to see phycical therapist. My Rhreumy instructs some excerices that helps the pain on bed before get up in the morning and it seems work very good for me.

    Good lucks

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