saying hello

[stillme]

new to this. fighting oesteo for last 10 years and had out breaks of poly myalgia rheumatica and now seem to have R.A Waiting for rubber stamping by consultant but feeling down with the pain etc

[sylvi]

Welcome to our group and i am sorry your not good,but rest assured there will be someone who will always advise you.xxxx

[stillme in reply to sylvi]

looking at the replies it seems you are cared for so I thank you for your reply. what is it that you have to cope with

[sylvi in reply to stillme]

RA,Fibro,CFS,Sjorgens,meneires, among others.xxxxx

[stillme in reply to sylvi]

i dont know the CFS or Sjorgens so will be googling. i hope there are times or at least moments of escape from all or some of the pain.

[allanah]

Morning. Yes getting the diagnosis is a long wait but definitely pathence is needed in this game! I have RA and osteo....most annoying although mainly strangely one seems to be ok when the other is active....that's only me!

Good luck. Keep us posted x

[stillme in reply to allanah]

this is the first time I've chatted on line!! so thank you for replying - that is also to the other reply -they have made me feel less alone. At home i am not "alone" but i think pan leads to a sense of isolation that while others can try to empathise i know people on the site will"GET IT"

[allanah in reply to stillme]

You head the nail on the head with that reply. I felt SO alone and didn't want to keep.telling my family how I felt. Here and the NRAS helpline were my lifelines!

Glad you are here x

[stillme in reply to allanah]

thank you and hope you are having a good day

[stillme in reply to allanah]

i find the exact same thing, i sort of think of it like having a sore toe and then being hit on the head - for a moment you forget about the pain in the toe

[SnooW]

Hi there, I'm new on here today but already received a warm welcome and lots of advice from people.

I fully understand and empathise over your feeling so down because of the pain. It can be relentless, but hopefully once you are properly diagnosed with RA, which really I hope for your sake it isn't that! but if it is, then you will be started on some meds that, given a bit of time, will begin to slow the progress of the disease and some decent pain relief will also be put in place. If they happen to offer you oral steroids (Prednisolone) and you are able to take them, please do as they really take away the inflammation and give you a break from pain. I love them but unfortunately it is not possible to stay on them, as long term use brings its own side effects and problems. But a short course, reduced gradually over the weeks, is a real boon! Hope you get your answers soon and do keep us posted. x

[stillme in reply to SnooW]

iwas diagnosed with PMR in 2010,- that first time lasted nearly 2 years - since then I've had two shorter flares. i was on the infernal Prednisolone and without anything to protect my stomach!! It led to other problems as did the Aledronic Acid. I know the steroids are fantastic in what they do but the problems they cause- I don't know if either they would consider them suitable or if I would risk furthering the problems they caused. I know this isn't the Poly Myalga Rheumatica or the oesteo flaring up so I think I'm screwed

[SnooW in reply to stillme]

I didn't know Preds could play havoc with the stomach - that's a pain, probably literally. No you certainly don't want to exacerbate any previous problems from those 2 meds. It's a medication minefield, sometimes, isn't it?

[sharpsally in reply to SnooW]

The steroids are amazing and as you say such a welcome relief. I had a steroid injection to start with but it wasn’t as good as the tablets. I was able to swim, run and walk again. Side effects troublesome but to give you a few weeks of your life back, definitely worth saying yes to.

[Ruth12345]

Hi. Welcome to this site. As others said to me when I joined, its the site you dont really want to be part of, but if you have this disease then this site is the place for you. I have a great family but the feeling of isolation and not wanting to burden them is helped greatly by the lovely people on here. Also its not all doom and gloom on here, happy things and things that make you laugh are also posted. I was diagnosed 15ish months ago and joined last Sept and the people on here are very knowledgable and supportive. All the best and let us know how you get on. ☺

[stillme in reply to Ruth12345]

yes I really get the feeling of support and underlying humour. As soon as I have my appointment with the consultant everyone will know