Sorry been away for a bit

Hi all, hope you are all on the up with this new weather we are having lol. I say new cos it's been a while since we last saw this heat thing called the Sun.

I have been away from it all for a while as not had a good past few weeks I am afraid.

Some days I can barely walk. Now I am not sure this is the PMR and I don't think it ties in with RA either so I am guessing the Fibro bit is having it's say.

My CRP is still rising even though the rheumy added hydroxychloroquine to take along with the MTX. I go back in a month so will see what he thinks. My CRP is at 32 at present.

One good thing though, my diabetes is under control at the moment with a hb1ac of 6.4 which is fab.

Last weds I had had enough of all the pain and I increased my pred from 15mg back up to 20mg. I have still not been 100% and I doubt that is likely any time soon but I did feel more able to do stuff. I even went on a shopping trip with my mum to look for a hat and a bag for a wedding I have in 5 weeks time. I didn't get owt but had a lovely few hours out with my mum.

I will reduce back down to 15mg on Weds and see how I go.

On a more private note and not PMR, I have managed to get my 14yr old special needs son in to a great special school in Melton Mowbray and he will be starting in Sept. So this will leave just me and Tegan my 7yr old daughter at home. She will remain home educated for now but if I get worse then along to school she will go. Though right now the school run would be hard for me.

Still getting out and about on my wheels which are now plastered with white and black stickers of german shepherds lol. Well I gotta make it my own ain't I?

My boy Harley is now 10 months old so hopefully will stop growing soon lol.

Right best go for now, I need to go get some cash ready to have highlights in my hair tomorrow so I can look more like my old self :)

Then later a soak in the hot tub to sooth my aches away.

Keep smiling :)


4 Replies

  • Hi Sue, I'm the new girl on the block round here just now. Sorry to hear you have been feeling poorly, but I do hope the new thing called 'Sun' will make you feel better for a while!

    Sorry to hear you have Fibro, too. I have it and at times my legs are little devils and I'm always moaning about them. I'm diabetic, too, but like you my sugar levels are back to normal and I hope they stay that way.

    Good to hear the news about your son, hopefully he will settle down at the new school in the Autumn, but in the meantime I hope you will all be able to enjoy the summer months with them both. You are to be commended for your home schooling efforts - something I would have done given different circumstances. Your dog sounds a bit of a handful too, don't think I could grapple with a big one like that.

    I'm off to supervise the planting up of a new flower bed - that means I sit there and watch my husband doing it all wrong!


  • Hello Catie, welcome to this fab forum.

    If you look back on my blogs you will see a pic of my boy Harley. He is a white long haired german shepherd and is now 10 months old. Unfortunately I cannot walk him alone so tag a long on my wheels (mobility Scooter). We had him as a friend to our 4yr old german shepherd. Then I got diagnosed with RA on top of this PMR then last time I went to rheumy I asked if I also had fibro as my legs did not really come under the other two illnesses. He said definitely but my bloods would not change with just fibro. I think he thought I wanted a diff diagnosis lol. So yes not content with one chronic illness I have to have a few. RA, PMR, Fibro and diabetes. How wonderful.......not

  • Hi Sue,

    Nice to hear from you again, but so sorry you're still struggling with the pain. You've got a lot going on, I guess, and it must be hard for your doctors and very frustrating for you.

    You say that you increased the pred over a week ago - and I wonder if you put it back down to 15mg yesterday? I wonder if this will result in a flare in symptoms as the drop is very large. Could you perhaps try and reduce more slowly - say by 2mg or maybe even 1mg? It might be easier for your body to adjust and perhaps the pain would not flare. Just a thought!

    Glad you are still 'out and about' . Good on your mum!

    My eldest daughter has recently been diagnosed with Fibromyalgia and is finding it very hard going to work and running a home etc. She gets very tired. She is on a mix of pain killers and NSAIDs, but still aches. It really worries me. I wish we lived nearer, but can't move because of the business. It frustrates me as I seem to be recovering, but now she's getting more and more ill.


  • oh Pats, sorry to hear your daughter has Fibro and struggling.

    Yesterday I ended up at the docs as I woke in the night unable to move my legs and was in so much pain everywhere. I just cried as my wonderful hubby woke up to get me up for the loo. Anyway the doc ordered urgent bloods there and then and I have to go back today to see if I have to go in hospital. He thinks the MTX is being naughty with my kidneys I think so it depends on blood results. I had a slight temperature also which concerned him. They will sort stronger painkillers also today as he wanted to wait for the results.

    Yes I did drop back down to 15mg but one day is a little quick to notice that. It is usually 3 or 4 days with me. I told the doc what I had done and he said I had done the right thing. Will soon see today. I also have a bad head.

    I had a good nights sleep last night for a change but probably more due to exhaustion from it all.

    I do hope you continue to get better Pats. Much love to you and your daughter, we will all fight this together :)

    Keep smiling :)

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