Kaleidoscope symptoms

Can't remember if I posted about me calling my illness "the kaleidoscope" because of the never ending change of symptoms - one goes another one comes.

Well, the excruciating cramp in my hands and arms has completely gone! It's such a relief. I was so debilitated by it, couldn't grip, lift, type - any kind of movement and my hands and forearms would spasm. My hands looked like claws and I could not manipulate them back to normal. This could go on for hours and sometimes even days. I'm just so grateful that this symptom has moved round on the kaleidoscope. I know it will return, it has done in the past, but please God not until after Christmas. How do you peel tatties with claws?

Hope everyone is feeling relatively good.

Wishing you all a very peaceful Christmas and better things for the New Years

Loads of hugs & xxxxx

Babs

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  • You are so spot on ! Changing with new symptoms from day to day. My hands are useless at the moment too. So painful. Had X-rays on my thumb joints now & said & got bone on bone so no wonder they are so painful.

    Sending u best wishes for Christmas & new year too. Hope 2016 is a better year x

  • Hi babs

    After the year you've had I am so pleased something is going ok for a while 8)

    It does make you think how much we should appreciate what we can do like the peeling veg which I haven't exactly enjoyed year on year. This year due to nerve damage and CRPS in left arm my left hand is permanently clawed and useless so for the first year ever I can't do the veg or dinner at Christmas and wish I could be upto my elbows in peelings!

    Finding the positive in what we can do is the only way to go even if it's a tiny thing to someone else.

    Merry Christmas Babs x

  • Thanks Little effie. So sorry you are having this problem. So debilitating. We do take so much for granted. While others are peeling the veg, you sit with a sweet sherry and supervise!

    Mary Christmas to you too.

    x

  • What a perfect way to describe our problems, we get over one thing and another rears it's ugly head. It's a good job we lupies are fighters, a very painfree and happy christmas xxx

  • And to you Karen x

  • Yes I relate to this very much. I'm out of the pained hands by several years now and new symptoms have been and gone for me too. The best moment for me was when I woke up one day to find that 18 months of dizziness/ disequilibrium/ disorientation had lifted. I'm not sure but I think the steroids may have chased it off. Whatever, as with the disappearance of your claw hands, it was bliss.

    I had this same type of dizziness for a while when my children were young and also had severe eczema, alopecia and rhinitis for many years too. When these went I'd feel on top of the world until something rudely came and replaced them! You are just left thinking "well what was all that about?"! I sometimes think it's all some super survival test I've been set by someone mean from a previous life! X

  • Hi T, it really gets you feeling that way.

    I can imagine what it was like for you to lose the dizziness. The steroids have definitely lifted the brain fog and confusion but unfortunately the dizziness and balance continues. I think that has something to do with GCA. Seems like I have had multiple minor strokes as MRI has shows blood clots on the brain. I think I've got away relatively lightly in that they have not affected my movements or speech. Swallowing still a little restricted.

    Anyway we play with what we have been dealt with and get on with it don't we?

    Have a really good Christmas and a peaceful New Year

    Babs x

  • That's such a scary idea re multiple clots Babs. You poor thing I don't think I've had anything like that. I had a brain MRI a year ago (before the stroke like episodes) and it was clear apart from "small vessel disease - age related". Reading that sort of thing makes me feel ancient but I'm only 52 (for 2 more weeks that is!).

    Speaking of ancient I just had to do yet another pee sample for something called a Bence Jones test which my rheumy has asked the GPs to run. Hadn't given it a thought as, apart from microscopic traces of blood, nothing ever shows up with me. Then just read that the test is to exclude or confirm multiple myeloma - most common in over 70s. So really hoping my confidence that this was just another test to show negative is correct now! An older person's cancer really wouldn't be so great.

    Yes to playing with what we've got but some happy, healthy days ahead would be a real bonus wouldn't they?! Happy Christmas Babs. X

  • Hi T, the bad thing about it is it was reported as "normal". It was the opthalmologist who told me of the blood clots on the brain as I also have one in my eye.

    I'm absolutely fine, just really shocked that it was missed. No treatment or advice etc. Could have had a nasty outcome be (thank God) it has been found now and on clopidogrel to thin the blood. I think they will keep a check on me from now on because they know they have made a huge error.

    I hope the test results come back good for you. I wish you peace and happiness and a better 2016.

    Merry Christmas T x

  • I know what you mean - I get the feeling when I have strange symptoms they are all coming from experiences in past lives - can't think of any other rational explanation!

    Or may be I am possessed?

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