has PMR returned?
Posted , 8 users are following.
Over the weekend I think I was feeling the symptoms of the fibromyalgia. THe fatigue kicked in and today I shamefully woke, from a deep sleep of disturbingly detailed odd dreams, at 3pm.
And boom.... the polymyalgic saddle-soreness is creeping back and a very befuddled head and hungry body.
I have a blood test tomorrow morning and GP on Thursday.
Does anybody else have fibromyalgia and poly?
Is it possible?
1 like, 10 replies
MrsO-UK_Surrey Gone_Girl
Posted
PMR pain can "creep back" if you reduce the steroid dose too soon or by too large an amount. It can also come back if you have been overdoing things rather than having lots of rest to allow the steroids to do their job of getting the inflammation under control and keeping it there.
Have you had a blood test to see the state of your hormones - any deficiency can result in pain. You should also request a Vit D blood test - again deficiency can lead to pain in similar parts of the body to PMR, and can be corrected with a course of pure Vitamin D3.
chrissie80897 MrsO-UK_Surrey
Posted
MrsO-UK_Surrey chrissie80897
Posted
You should definitely be taking the calcium + Vit D pills when on steroids, always leaving a few hours between Pred and calcium so that the latter doesn't interfere with the absorption of the former.
However, depending on how low your Vitamin D levels are, the Vit D in the calcium pill won't be sufficient to restore levels to normal if you are very deficient - you will need a 3-month course of high dose pure Vit D3 (Colecalciferol) in the first instance.
grandmaDylan Gone_Girl
Posted
chrissie80897 Gone_Girl
Posted
chrissie80897
Posted
MrsO-UK_Surrey chrissie80897
Posted
The main reason for returning pain and stiffness is that you either didn't remain on the starting dose for long enough to maintain control over the inflammation, or you reduced by too large an amount in the first instance.
The steroids are not curing the disease - sadly nothing does at the moment - they are just damping down the inflammation that causes the pain until PMR goes into remission, and that can take anything from 2 years upwards.
If you remember at which dose the pain and stiffness started resurfacing, then you need to return to a dose just above that and remain there for a good month at least.
Flutterbie57 Gone_Girl
Posted
Gone_Girl Flutterbie57
Posted
I am in very tepid and rainy Edinburgh Scotland. It does not feel like summer at all.
Sorry to hear you are having a flare up of fibro in the heat.....but your PMR has subsided!!!! I am the other way round.....fibro ok but PMR is creeping back in arms legs and bum.
Am a bit cheesed off as was wanting to come off the pred....I hate the thought of being on steroids..."prefer" fibro to poly any day!
Are you American? Do you live in there? I am English but have been living in Scotland for 16 years... maybe I should live somewhere warmer
Flutterbie57 Gone_Girl
Posted
I do like your desciption 'disturbingly detailed odd dreams'. I always have a physically bad day if I awake with bizarre dreams
Like you I hate being on steroids, but my Dr kept stressing that blindness could result, so I take them. It is like being stuck between the devil and the deepblue sea - I don't feel good on them, and I feel intense pain (to remind me) when I lower them.
It was a bit of a mixed blessing when I first started Pred - I had 3 marvellous, magnificent, incredible days with no Fibro pain(1st time in 18 years). I couldn't believe how much pain you can get used too. And my head was clear (unbelievable feeling). When it didn't last, I went into a slump and then found this forum to hep me. Eileen had said that I might have gone into Euphoria and my Dr eventually said the same. I didn't feel euphoric, just no pain.
I am slowly accepting that I have to live a much slower (lazier) lifestyle, and I do know a dry, medium climate suits my Fibro best. Where could we all immigrate to ?