newly diagnosed

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newly diagnosed

Postby pandabear » Mon Jan 09, 2012 4:03 pm

I was diagnosed with Hughes Syndrome 10yrs ago with a bit of lupus and sjogrens thrown in. Went to see my GP in November because my back and legs were very painful and thought I had the family polymalgia but he sent me to a rheumatologist who said it was fibromyalgia. I think it probably came on gradually after four shoulder ops in two years (none of which has been fully successful) and then hit me with a bang.

I was already on Amitriptyline and the consultant suggested upping the dose from 5mg to 7.5mg which I did and the pain lessened a lot but it was just before Christmas and I felt doped to the eyeballs so I've dropped it again and the pain is coming back. Also taking Ibuprofen which I shouldn't really do when on warfarin for the Hughes, but it's the only painkiller that doesn't make me feel sick. I've got some Duloxetine to try and took a 30mg dose but felt wiped out the following day so my GP has given me a 20mg dose to try, but I'm nervous of trying anything new as I am desperately sensitive to medication.

I already suffered brain fog and fatigue because of the mild stroke I had before Hughes was diagnosed but it is a double whammy now and some days I don't want to get out of bed. I don't know from day to day where the pain is going to strike (back today) or how bad it is going to be and this is going to take a lot of getting used to. My physio has given me some exercises and I do a daily short walk, and pace myself.

But it does get me down - I'm only 59 but my 90yr old dad is fitter than me and still leaping round the golf course.
I know from after my stroke and shoulder ops that I have to adjust to a different way of things but it is very, very hard.
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Re: newly diagnosed

Postby FluppyPuffy » Mon Jan 09, 2012 5:16 pm

:welcome: to the forum pandabear :wave: :wave:

There is a lot of advice and info on here, so hopefully you'll find some of it useful :fingerscrossed: :fingerscrossed: We also do quite a good line in trying to support each other with the rubbish that FM and things bring with them :facepalm: :facepalm:

It's inevitable that you'll feel down at times, our lives are turned upside down by things we have no control over and we have to try and make the best of what we get, which adds to everything in it's own way :facepalm: :facepalm:

You're doing the right thing with walking, pacing and the exercises, to keep yourself as mobile as you can. As for getting used to things, just take each day as it comes, or even each part of a day as it comes, there is a lot to get used to like you've said, so doing things bitby~bit will hopefully mean you're not overwhelmed with everything at once :fingerscrossed: :fingerscrossed:

I know you've said you're sensitive to meds, if you can give the duloxetine a good go and persevere thru any side effects and let it fully get into your system, it might make a difference to you :fingerscrossed: :fingerscrossed:

Anything you want to know about, just ask away and we'll try to help you with it :wave: :wave:
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Re: newly diagnosed

Postby denys » Mon Jan 09, 2012 11:42 pm

Hi Pandabear and :welcome: to the forum, sounds like you have been through the mill so hopefully we'll be able to offer you some light relief :crazy: :crazy: :crazy: :crazy: :crazy: :crazy: any questions just ask and if we dont know the answer we'll make some up for you (not really) between us we'll find an answer for you :-D :-D :-D :-D :-D
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Re: newly diagnosed

Postby animalhouse » Tue Jan 10, 2012 12:19 am

hi pandabear,

its amazing how your years fly pass with this condition and you feel twice as old.

take care and just be careful not to do too much and pace.
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Re: newly diagnosed

Postby shazq » Tue Jan 10, 2012 1:18 pm

:welcome: to the forum pandabear. :wave:
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