Update From me ..

madness1985

Hi all,

I keep disappearing for periods of time so thought id send a catch up post. Basically at the moment im see medical prof most day t least 3 days out of 5 every week

Generally im not doing well ive lost more weight im down to 5 stone 6 as they believe that the reducing of steriods is factoring in this as im now on 7.5mg a day which i will be stopping completly in May because of my heart condition. Mood isnt getting any better im still on anti-depressents n not particularly bringing my mood up but maining it. Im seeing someone about my needle phobia and going for heart tests in april. Im back taking painkillers regularly because the pain has increased since lowering steriods. My mussells are still hurting and im asking people to investigate this as im really tired and a couple of mornings ive woken up and gone im so tired .. aparently in the night my legs r going al over the place .. i crnt confirm or denie this but my partner says its like im river dancing!

Well thats me

Hope everyone else is having ome pain free time

madness x

tkachev

Hello there,
You really are suffering. I am glad you are being well monitored of your pain and heart issues and loss of weight.If they could find the best medication and lower the pain you might be able to improve your appetite too.As long as they looking after you that is what matters.Lets hope they can help you soon as you have been suffering long enough.

Best wishes
Elizabeth

frogmorton

Hi Madness

Blimey you are going through it :shock:

If I was river dancing all night - i think I'd be knackered too

At least they are monitoring you closely I suppose, but you'd think they'd be able to help you

When you get some answers you'll have to let us know.

You take care

Love

Toni xx

09angel11

Hi Madness

Sorry you are not well. I know what you mean about the legs and river dancing, they call it irritable leg syndrome, perhaps all of us who have this should apply to Michael flatly, dont whether i spelt his name right, but we would have to emphasize we would have to do it sitting down, new outlook on it though, you never know?

Take care
Love monica x :roll:

dorcas

09angel11 wrote:

Hi Madness

Sorry you are not well. I know what you mean about the legs and river dancing, they call it irritable leg syndrome, perhaps all of us who have this should apply to Michael flatly, dont whether i spelt his name right, but we would have to emphasize we would have to do it sitting down, new outlook on it though, you never know?

Take care
Love monica x :roll:

Hi madness!

nice to see you posting again, but sorry you're having such a terrible time of it.

hope thinks ease up for you....can you get meds for the night time running legs?

iris x

madness1985

Thank you all for your replies. I will keep you updated with things im hoping that soon we will have a break throught in october its been 2 years since i started getting the pans so fingers crossed we can get sumwere soon. This past 2 years hasnt been fun!

Im going to speak to my gp about my restless legs hopfully we she may have a solution!

Take care

xx

caprica

Hey Madness,

So sorry to hear things are still so tough. That's good that they're monitoring you, I hope you get relief soon. Sending you happy thoughts!xx

woodbon

Hi,
Nice to see you managed to post, sounds like you'r having a really rough old time! No wonder you'r so tired, if you'r spending the night dancing, hope you have some nice dreams to go with it!!! :oops:

Sounds as if you'r being really looked after, I hope they can find some way of controlling the pain for you and getting your appitite back.
Lots of love Suexxxx

topgirl

Hi,
I wondered where you had gone....
Sorry things are not so good
Keep posting and let us know how you are...
xxx

madness1985

Hi all,

Me again! Just to let everyone know they have now stoped all my physio and guess what the joints have seezed up almost instantly! My needle phobia is going well but she thinks it coul take another 12 weeks before im cleared of my phobia because it is so deep. Im back at doctors tommorrow hoping ive gained some weight as i now have to see a dietition because my weight is so up and down

My dad is thinking of sending me for a private health check because before i had weight probs i had mussell joint pains and awful fatigue and even some of my partners friends (army medics) have questioned ME and gps keep saying .. its the ra, its the weight and i think this is wrong ..

ill let you know what happens tommorrow!

Thanks for all your messages, good job im a tuff cookie and still getting out of bed even when i dnt want to!

xx

speedalong

Frogmorton said,

Hi Madness

Blimey you are going through it

If I was river dancing all night - i think I'd be knackered too

Have to say I agree!!

Life sounds VERY tough, hope they get you sorted.

Speedalong

maria09

You are having a rough time
Just offering you my support & good luck for today
Maria x

barbara12

Hi Madness
You poor thing going through all this, like they say when you get the medication right , hopefully your weight will increase, and your pain will ease.
With the team you have around you, and the support you will get from us lot, you will get there.
You keep posting then we know what is happening, don't forget we are always here for you.
Take care
Love
Barbara xx

madness1985

Hi All,

Well i went to the doctor yesturday and asked about a CPN as my needle phobia lady suggested it and my gp said i wasnt "bad enough." Im off to the dietition on Thursday and have to keep a food diary hopfully they will be able to help me too.

My weight well for the past 2 months ive gone from loosing 1lb to gaining the poud back then last fortnight i lost 3lb but yesturday i had clawed back 1lb.

Im feeling really down at the moment just feel like im going no were. Im so tired and keep getting headachs. Ive started reading again to help give me summat else for my mind to conserate on, the only problem is im reading a 400 page book in 48 hours!

Thank you again for all your messages.

Take care x