hello...just wanted to share my experience with you all.

wobbly1

hello all
I am 44years old and have been diagnosed with RA for the past 2years or so.I have been pain in most of my joints,nerve and general pains. I am on a long list of treatments and medications etc and feel that the hospital support me well in managing my RA. I do however feel that its had ahuge impact upon my life which has limited the quality and what i am able to do.my whole life now seems to be work and bed with nothing inbetween.Although i recognise that i am well managed it is with sadness that i am not my old self and still have pain, fatigue stiffness swelling etc...but it seems that this is really well and i have to adjust my expectations it doesnt help that i have just been diagnosed with OA in my spine..spinal stenosis and chronic siatica, also cervical spondy in my neck :shock: I am due to see the nureo surgeon on the 14thjuly so fingers crossed he can help with the pain...cause nothing seems to touch it. thanks for listening everyone...i needed that moan

skezier

Hi and welcome to the site, I hope you find it helpful cus it is a very good site.

I'm glad your seeing someone soon and hope they can help you. Good luck and take care, Cris

mistywillow

wobbly1 wrote:

hello all
I am 44years old and have been diagnosed with RA for the past 2years or so.I have been pain in most of my joints,nerve and general pains. I am on a long list of treatments and medications etc and feel that the hospital support me well in managing my RA. I do however feel that its had ahuge impact upon my life which has limited the quality and what i am able to do.my whole life now seems to be work and bed with nothing inbetween.Although i recognise that i am well managed it is with sadness that i am not my old self and still have pain, fatigue stiffness swelling etc...but it seems that this is really well and i have to adjust my expectations it doesnt help that i have just been diagnosed with OA in my spine..spinal stenosis and chronic siatica, also cervical spondy in my neck :shock: I am due to see the nureo surgeon on the 14thjuly so fingers crossed he can help with the pain...cause nothing seems to touch it. thanks for listening everyone...i needed that moan

Hi there
welcome to the site. No one minds you moaning, in fact it is the best place to do it, everyone understands where you are coming from and we all feel able to vent our feelings here too.
It is a hard adjustment to make, the transition from a fit well person to one with lots of pain that makes everything a struggle. I have RA and it goes between flare ups and being reasonably well controlled. However after battling a bit and grieving a bit, you do get on with making the best of it. Once the pain is better controlled you will have more inclination and energy to have a bit of a social life. i really hope your appointment goes well and helps you with the pain.
Gillx 8)

vonski

Hi

Welcome to the site. Life with arthur is a hard path to walk with ups and downs. You have found us now and we will do what we can to help you. I was diagnosed almost 23 yrs ago with severe oa and ra has now popped up on my Drs. notes but no firm diagnosis.

It's good that you feel supported by your medical team and I hope that the neuro surgeon can offer help and support too.

Let us know how you get on.

Love
Vonski x

debatat

Hi I have RA and have just been diagnosed with cervical spondylosis. Its hard with all the different types of pain. It is a big adjustment and hard to live with the pain. I am glad you are being seen quickly. I hope they can help you, I would be interested to see how they can help you. Let us know how you get on.

Deb

jeannie2

hi wobbly, and Welcome
It's a bitch, this RA, along with the other stuff that goes with it. We all wish we could have just a a week - a day - a couple of hours without it. We must have ALL done something awful wicked!
Glad you've got good support and, hopefully, they'll deal with the pain level for you.
Keep your chin up and moan all you like - it's strange that I usually feel a bit more like myself when I've had a good moan.
I know you have had to give up various things but, as time goes on, other things will take their place and you won't feel quite so ...... incapable of enjoying life.
I have a good yell now and again because of the frustration, and I'm sure a lot of the others feel the same.
Jeannie S

frogmorton

Hi Wobbly
Welcome from me!
Feel free to let off steam here and vent your frustratiuons. We may just have the odd answer which could help you - you never know!
It iS so hard accepting the 'new' life and letting go of the old.
To me it sounds as though you might not be as well managed as you think because it shold not be bed and not a lot else
Maybe it's to do with the back/neck problems and you will be given some help when you see the neurosurgeon. I hope so
Well take care for now
Toni xx

joyful164

Hi Wobbly1

Welcome to the forum. Like the others have said, it does you good to have a bit of moan and let off steam about what you are going through. We have all been there and still going through it some days. As soon as you think you have everything under control, it all falls apart and you have to start again. Two steps forward, one back.

I said to my OH the other day that, in future, we wouldn't be able to book ahead for any event, holiday, days out. You really do have to take each day as it comes at times. Back in February, I booked up two long weekends and one two week holiday. So far we have had to cancel the two long weekends, but there is no way I shall cancel the fortnight. No matter how I feel at the time, I am going to make it. You will find things get easier once you sort out your medication and treatments, so good luck with your appointment, make a list of the things you want to talk about and get answers., all the best
joyful

lindah

Just adding my voice to all of the above.Welcome to the site and you just moan,rant praise or advise all you want,thats what we do best on here. The support is like nothing anywhere else.
Linda H

wobbly1

hello all,
thank you thank you for your warm welcome...its made me smile today when i found all your lovely messages its a great comfort to know i am not alone. I wish i had the same level of understanding in general though...my family is fantastic so no complaints there, but some of my friends and work collegues i truely believe they think i am making a fuss about nothing. Reading on this forum i realise this is a common problem that if people cant see it then it cant be that bad. I have had so many comments of your not old enough and you look so well and you are walking about fine but they dont see you at home crying with frustation...or the amount of tablets and injections you have to contend with. I dont want to wear flat shoes anymore...or match my dress to my stick at the end of year works do....oh dear i am having another moan :oops: anyways enough for now...i will try and drip feed the moans from now on take care x

wobbly1

hello again :roll: i know you cant keeo me away now
anyway I will keep you informed how i get on at the hospital...hopefully i can share some good tips...takecare x

suncatcher

Hi wobbbly a hello and welcome to site feel free to say what you feel saves bottleing it all up hope you find site informative all the best joanne

lindalegs

Hi Wobbly1 and welcome from me.

I love your posting name

We all know how you feel and it won't always be like this, things do get alot better. You're going through a very difficult time and it sounds to me as though the disease is controlling your life instead of you controlling it.

Is there any chance of just spending a little time on yourself each day doing something you enjoy doing? Even just reading a couple of pages of a novel, flicking through a magazine or having a bubble bath may start to help you reclaim your life back again.

Find a little window for you and build on it.

Keep us posted on how you go on.

Luv Legs

valval

hi have oa and some days work and bed is all i can manage (only do 4 hours at other times feel much better and play catch up with house work ect but have to remember not to over do it as can catch u out if not carefull good luck hope u feel much better soon

wobbly1

Good luck next week.

thanks for all the lovely messages of support...you are all fantastic, i am feeling stronger today but i am embarressed to admit that i had a moment last week when i threw up my hands and said...thats it i am just going to go and sit in a wheelchair and wait :oops: not that my world or anybody elses world ends when/if you use a chair, i am not sugesting that...i am ashamed though of my attitude. positive thinking gets me by and stamping my feet and sticking my bottom lip out is not going to get me anywhere...hope your all having a good day...talk again real soon xx

joyful164

Hello Wobbly1

Hi, how have you been today? Hope you are feeling a lot more confident.

The last few days have been great for me, haven't felt this well for weeks now, just trying to get all my medication right. As I have probably said before, the only medication I was put on and I have not taken is the Clomazepan, which is a kind of antidepressent. It just didn't suit me and it made me feel worse.

I'm hoping I don't get another set back though my hands aresuffering after an afternoon painting with my art group.

I know what you mean about work colleagues. There was only one who really knew what I was going through, and that was because her sister was suffering so much also. Anyway, I gave up on work because I was sitting there in so much pain. So I fought to get retirement on the grounds of ill health and manage to up my works pension by £2k.

I think it is the tiredness that hits you the most. Anyway, I wanted to wish you well for the 14th and hope you get the answers you want. I hope you have made that list.

joyful