I am a newbie!!!!: Hi all I have found great comfort in... - NRAS

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I am a newbie!!!!

Popmartin profile image
17 Replies

Hi all I have found great comfort in reading all your blogs,Thankyou!! :) nice to know that I am not alone when in pain and feeling so tired....I have had RA for nineteen years, I hate it, it takes over so much of your life and leads to so many other illnesses just wish it was recognised more as being a very debilitating progressive disease, and not as most people think when you tell them ' oh Arthritis yes I have a bit of that". I have both Knees replaced and part of my foot so far but hip is soon to be replaced but hanging in there!!!

My Other half or better half as I call him is amazing and so caring and understanding as many of you know we are very hard people to live with...poor man..bless him. I have also just been diagnosed with Fibromyalgia, I just thought it was the RA tiredness but no its fibro!! So presently sleeping my days away, am about to go into hospital for infusion of Abatacept, have tried everything else so fingers crossed I will get a good result and soon be chasing my lovely man around the garden...ha ha ......Anyway, hello to you all and do hope you are all having a good day, if not big hug and look forward to your blogs...x

Kind regards

Corrine

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Popmartin
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17 Replies
sylvi profile image
sylvi

Corrine, welcome to our friendly site. I also has fibro as well as ra, and its not much fun is it. I find the fatigue the hardest. We all look well,but looks are very different to how we feel inside.

Hope you have a good evening.

sylvi.xx

Lovely to meet you Corrine, it's always nice to see a new face :-) I've been coming on here for a while but only diagnosed this week. I hope you start to see some improvement soon as it sounds like you've had a pretty rough time of it. I have a lovely other half too and really don't know what I would have done without him this past year. I look forward to learning more about you.

Paula x

Gina_K profile image
Gina_K

Hi Corinne,

Yes it is great to find others with this condition in common it makes you feel less isolated etc. I was just thinking maybe I have fibromyalgia as well as RA. I get crazily tired sometimes and othertimes I am ok. For example, I set off to do the food shop today and felt fine and was planning to do more stuff after food shop, mid way thru aisles, I got an overwhelming feeling of exhaustion. All my bloods are Ok, basically, how do they distinguish fibro, I could google and will but in your experience???

Gina.

in reply toGina_K

Gina and all: When food shopping, does the store have electric carts to take around the store, with the shopping basket on the front? If so, use them, you will save alot of wear and tear and pain, and can go home not nearly as wiped out! Hsappy shopping! L.xxx

sciqueen profile image
sciqueen

Hi Pop

& welcome.

Look forwarding to read your blogs

Sci x

Hi Pop - glad you've found us - you maybe a newbie to this site but not to RA it seems so that's always very helpful to many here. Really hope the Abatacept works for you and you can run around the garden at last. Tilda x

Popmartin profile image
Popmartin

Thanks all...................Gina, my Consultant diagnosed the Fibro because of the tiredness, and also numbness in feet and more pain than usual(if there can be any..ha ha) in my arms etc!!!!

Am off to have an early night as my other half has gone away on a much deserved golf holiday with his buddies!!!

So I am having a girlie day tomorrow with friends coming over to look after me and have a few giggles!!!

Hope you all having a lovely evening...........x

Corrine x

LuckysJoy profile image
LuckysJoy in reply toPopmartin

I am soo Happy for you that you have support with girlie friends and a partner, I have no one at all, so I have found this site to read the blogs and share, it seems that since my RA and Fibro is so active, My so called friends dont have time for me, so I have no support, I have my Psycologist once a week, shes lovely, but thats one hour once a week, I have been looking if there were any support groups in my area, but am not able to find any, I almost want to put a sign in shop window, to see if there are any in my area who suffer in silence and feel as alone as I do. I wish You well Lisa x

in reply toLuckysJoy

Hi Lisa, You can do that, and/or also, if you have an area newspaper, ask them to put the same kind of message in there, maybe on the Society or People's page. I did this, in 1996, got so much response, had to have a bigger meeting place, so went to see the administrator of the local hospital, he offered a meeting room,. plus a beverage cart, for each meeting (once a month), he loved the idea and offered also to be an official sponser, and put a monthly meeting notice in the newspaper.

Well, it grew! People come to a meeting, some come back again, have many regulars, but many come for a couple meetings, get what they are looking for and only come back if they are interested in the speaker I have lined up for the next meeting. The last I tried to count, I have met and helped over 700 people, from all the towns and villages in the area.

Good luck, great idea, maybe your NRAS can provide leaflets and other printed info about all the various auto-immune diseases. I'm sure they will appreciate the opportunity to reach even more patients of all these diseases.

...and it gives you real purpose, and a positive outcome of all the pain and inabilities you experience. Loretta xx

in reply to

PS: Now, my very closest, best girlfriends, four of them, I met through the meetings many years ago and we remain dear friends, always in touch, get together for each birthday, holidays and any other excuse we can come up with, to get together. Always, caring about each other!

PJ68 profile image
PJ68

Just wanted to say Hi!

Im not good right now, but wanted to let you know that I get so much from the blogs on here, that a short one from me might make you smile!

Have a wonderful girlie day tomorrow, and I hope things improve for you soon x

Take care :)

Pen

Popmartin profile image
Popmartin

Hi Pen

Yes you made me smile, and thankyou i hope to have a giggle always makes you feel better!! hope you start feeling little better soon.........:)

Look forward to reading the blogs in the morning, always check when I wake!!!

Corrine x

artyone profile image
artyone

Hi I am new to this site. Am looking forward to some support and advice.It is all a bit confusing. I a diagnosed with RA fibro oesto andposs lupus.And yet myhusband says if i just bang the lumpon myfingerit will go away like his did.

So some moral support on this site would be great.I know i willget it thanks for reading my rant. carol x

in reply toartyone

Welcome, stay here, come back often, you will get so much from these people! But..Don't bang your finger!!! Good grief, that would hurt, and no it won't go away. Probably an arthritis nodule. Regards, Loret

Hi Welcome to you newbies, I have Ra and fibro too xx

LuckysJoy profile image
LuckysJoy

Morning, Well its Morning for me, as I had a really bad night last night, As Corrine said, I now find, that I check these blogs before i even check my FB or email, That tells me something, Inspiration,

Thanks Loretta for all your suggestions, we do have a Local towne paper and also I could check into The Cornishman, all great suggestions, I appreciate the help, It helps to Motivate me, I dont have much of that these days, But also a purpose, I hope to have a group soon, Others, LIke Me!!

Lisa XX

Popmartin profile image
Popmartin

Hi all, hope you are keeping ok, cant bring myself to say well!!! as we all know that we are not lol.....

All change for me and Abatacept not until next week now as I have slight infection....bugger bum....anyway onwards and upwards and keep smiling as at least I am getting another drug to try.

Had a lovely girlie day, of which my brother turned up with his wife, but class him a an honorary girl!!!!! He has been decorating for me this week and has stayed over as my fiance is away on a gentlemen's jolly so has been nice having him here, but talks to much ha ha ha !!!!

Will be sharing a bottle of prosecco with him later to say thanks....

Talk to you all soon....big :) and hugs to all xxxxxxxxxxxxxx

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