Newby

[Lassie1234]

Hi everyone, I’m new to the group and look forward to sharing with you

[Blearyeyed]

Welcome !Its a wonderful group with some amazing and well informed forum leaders.

Its a scary time when you first get diagnosed but you will get plenty of support and guidance here.

Check through old posts in the Topics section and Pinned Posts in the right hand side bar for any questions you might have , and ask any questions ( no matter how small ) if you can't find what you want or you need help understanding anything.

My first advice to anyone , us to take a big deep breath , get calm again and give yourself sometime to get used to the diagnosis and medication . Your mind and body will be in a bit if a spin at first as you get used to the drugs and needing to alter your behaviour a bit to control your pain while you have PMR or GCA.

I also suggest trying to follow the , " H.A.P.P.Y ", method while you have a chronic condition.

That's ,

H for Honesty ,

because if you are honest with others and yourself from the start about the fact that you have an illness which may mean you need to slow it down and get extra help from others with certain tasks , or may need to cancel plans sometimes , You , your family , work and your friends know how things stand and feel a lot more confident talking about and dealing with the situation.

A for Acceptance , accept that you will need to make some changes in everyday life and diet to help control your condition and your pain.

P for adaPtion , see what will help to make the time with your illness and on medication easier to cope with and then work out how to adapt your lifestyle to accommodate those changes.

P.Y. is for Pace Yourself . Really important , if you pace yourself and take extra rest and relaxation between activities , and delegate certain jobs to others , things may take longer to do but you will find it easier to cope with your illness and side effects , and have less flare ups along the way.

Take care , we are here for you , Bee x

[SheffieldJane in reply to Blearyeyed]

Brilliant post Blearyeyed! Welcome Lassie 1234. X

[MiloCollie in reply to Blearyeyed]

Well said. I also recently told my hubby about the spoons analogy and that seems to have really helped with HIS understanding. Best wishes lassie1234.

[Blearyeyed in reply to MiloCollie]

Brilliant! It does take time for it to sink in with friends and family and they often forget that you may not be able to do something or why you might need them to do things for you , and they often make stupid comments , but if you take a deep breath and give them a kind reminder they usually get it in the end . It certainly makes coping with your illness far more stress free.

[Lassie1234 in reply to Blearyeyed]

Thank you Blearyeyed and everyone that has kindly replied. I’m still finding my way around the app at the same time as reading many posts. I’m finding the information amazing. There are so many symptoms I’ve experienced but thought wasn’t related to GCA or PMR that actually is after so many of you have reported the same symptoms. Wish I had found this app 22 months ago

Everyone take care

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

You might like to look through this post for general info even though you aren’t new to disease -

healthunlocked.com/pmrgcauk...

..and then at the FAQs for more specific topics - the initial temporary posts are on Covid, but the permanent ones are alphabetically listed -

healthunlocked.com/pmrgcauk...

…but there’s always someone around to respond …

[Kendrew]

Welcome Lassie1234.When I joined this forum almost 3yrs ago, it was almost like I'd found a pot of gold. Finally I could ask for help with any concern or worry, safe in the knowledge it would be addressed with informative, reliable and trustworthy responses. I know you'll find it as helpful and supportive too.

There are some very knowledgeable people here and I for one am truly grateful for all the reassurance and clarity they've given me during challenging times.

[Koalajane]

Hello and welcome to this wonderful group of fellow sufferers. We have some very helpful informed people in this group

[Bcol]

Morning Lassie1234, welcome to the forum and just to add to the comments from the others, we have members across the continents as well as some UK night owls so there is nearly always someone around to help or listen to problems, rants etc. All the best for 2022 as well.

[Fiddlemum]

Hi ,I’m also quite new to this . Just starting my third week of 15mg Prednisilone. It’s so good to be able to ask questions. I’ve had many vague symptoms and it makes me panic a bit sometimes. Seeing GP next week . Tapering is on the agenda- a bit anxious about that. Hope you’re doing ok and getting good help.

[DorsetLady PMRGCAuk volunteer in reply to Fiddlemum]

Not sure if I sent you this link, if I didn’t please have a read, hopefully will help you understand your illness a little better, and maybe allay the panic you feel at times - but remember if you are feeling a bit wobbly anytime, just seek advice - all been there.

healthunlocked.com/pmrgcauk...