Hi all not been on for a while, I have waited a long time but going to rheumatology Tuesday hoping to find out what is wrong with me I was being treated for RLS but I have pain all over it changes, always in my legs then can be neck shoulders, wrist, and now under ribs tried most things, magnesium worked well at first and also other meds but do not last, only sleep a couple off hours then a wake again, what I want to know what questions should I ask, this is realy hard to write my sister who was only 52 has just taken her own life shehad dystonia and could not take the pain any more, I am heartbroken but can understand why, I just need to talk to people who know about pain.

10 Replies

  • Hi there

    Please accept my sincerest condolences. I cannot imagine how you must be feeling right now.

    My thoughts are with you and your family.

    As to your Rheumatology appointment let the Consultant lead you. He will ask you lots of questions and examine you.

    You could write a pain diary until next Tuesday. Just simply stating where the pain is and how bad etc. They sometimes find these useful.

    Your Consultant will know what to ask you. Good luck with your appointment.

    I hope you find some answers.

    Lu xx

  • I'm so very sorry about your sister Frances, my sincere condolences.

    I had my rheumatology appointment just a few weeks ago and my consultant started by asking me "what had been happening" so I explained my pain, sensitivities and lack of good sleep and then he went from there asking for more specifics and family histories. He also examined me in terms of joint movement.

    I don't think I asked any questions as he seemed to cover everything. He gave me a leaflet on fibro, explained the sleep pain cycle to me and said he would write to my GP with recommendations re meds to help me sleep. I see my GP on Monday so can't advise beyond that yet.

  • So sorry for your loss..... I'm sure you will be helped ❤️

  • I am so sorry to read your post and my sincere condolences about your sister and I am sure we are all thinking of you at this sad time. My brother in law died at 52 and it is such a young age and you must feel her loss intensely.

    BlueMermaid3 has given you good advice about keeping a pain log as sometimes when we see the professionals and there is little time it is easy to forget vital things. Hopefully they will be able to come up with some answers for you. Take care and let us know how it all goes.x

  • Ohh my, im so sorry for you. It's very tricky isn't it when someone you love can't keep going due to terrible pain, I know I've been to that dark place. This is obviously effecting your mental and physical health, it's bound to.

    Please go and see your dr if you are not sure that you can cope, she may be able to offer you some additional counselling or meds?

    I'm so glad that you shared this with us, because actually writing your feelings down and opening up is, as I've been told, good for you. Reaching out is also good as it means you're trying to find a way to help yourself.

    Give yourself time to grieve and go through all the different emotions, sadness, anger etc, it has to come out.

    Look after yourself and I hope your appt with the consultant goes well.

    Take good care of yourself and all my best wishes 🌸🌺

  • frances1 , So very sorry to hear about your sister.I wish you the best at uour dr appt. Please let us know how it comes out.Take care of yourself. Be blessed .Peck.🐤

  • Hi frances1

    I am so genuinely osrry to read about your sister, and I would like to offer you my deepest condolences on your sad loss. I want to sincerely wish you all the best of luck, and please take care of yourself.

    All my hopes and dreams for you


  • i am so sorry to hear about your sister, please accept my sincerest condolences.

    i know things can be really hard as i've been going through a bit of a time with everything myself at the moment so all i can really say is that if you ever want to talk/chat/rant/vent. any one of those things, i am more than happy to listen. sometimes it helps to just get things out.

    hoping that you find some relief soon and much love and the biggest gentle hugs i can send you. x

  • Frances 1: Sooooo sorry about your sister. There wasn't any pain med that would help? Opioids? Or they would not give to her ? First you need to know what diagnosis is, then , what meds are available to relieve the pain !!!

  • So sorry for your loss how devastating for you and your family.

    I do hope you get some help from the rheumatologist on Tuesday, good luck

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