HiI was wondering if there is any connection between SA & Spina Bifida (SB) as I finally been told that I do have the mildest for of SB called Spina Bifida Occulta which I was told 5 years ago…Continue
Started May 30, 2014
HiI was wondering if anyone has used this mask as I am thinking about asking for this mask when I am due a new mask in October as I have the Quarta Air which I not getting on it that well so…Continue
Started this discussion. Last reply by Edam Jul 16, 2014.
Over the last month I have been having good numbers below three but I am very tired. I have noticed that on sleepihead that it I am having areas on the graph there is a totally flat line. On…Continue
Started this discussion. Last reply by Manda Liversage May 11, 2014.
HiLast week I had a bad leak from my boiler which soaked the wooden floor board now all I can smell is mould. This is the room I sleep in what can I do to help get rid of the smell. I am concerned…Continue
Started this discussion. Last reply by Kath Hope Mar 5, 2014.
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Hi Dee - how are you today?
Hi Dee I'm wondering what doses you were on (I recall you mentioned them in a post once, but fibro fog makes me forget) and how they are actioning your reduction.
I am now on Pregabalin as the Gabapentin was no longer having an effect, and plus once on Pregab I have been able to come off the anti-depressants for first time in 12 years - been off them since August last year.
My reason for asking about the dose levels they are using is that you have to come off these in real tiny steps - nothing like as easy to get off them as when you start! I'm trying to reduce at the moment and of Pregab I was on 300mg twice a day. That's the max dose for fibro. (Gaba I was on 900mg am, 900 lunchtime and 1200mg inevening)
Anyway - I tried to get off at a reduction to 200 in day and 300 at night, but was way to big a drop so they tried 250 in day still to hard so at the moment I'm taking 275 and 300. I'm tired and rather emotional (husband decided 2 weeks ago he wants a divorce) so I know I'm not making a lot of sense, but I'm trying rather inarticulately to say try to get the smallest reduction possible and make sure that you're stable before going down again. Because there isn't a 275mg pregab I'm taking 2 x 100 and a 50 and a 25 and you may end up doing the same until it sorts itself out.
Don't be rushed into a) deciding to reduce your dosage, and b) into doing it faster than your pain levels can cope with. Cos it's not about anything other than how your pain levels are. Fibro really is a shite of a thing, but we have to take control of our condition cos if we don't, then the NHS accountants do.
Are you with a pain clinic? And also how much support do you get from your GP? Mine are both fab - but I'm really lucky to have that now and it took 12 years to get recognition so I've seen some shit ones. I'd suggest if you can, talk to them about how YOU want to control your pain meds. I get multiples of all the doses of tablet strength but still totally up to 300 mg twice a day. My GP acknowledges that I could happily off myself any time I wanted with all the stuff I have, so the fact that I'm trying to take less not more is a good thing.
I'm always here for you if you need to chat.
Gentle hugs
Manda xxx