Hi Fiona

I'm so pleased you are experiencing a remission - it's what we all would like to happen. Long may it last! I sometimes think that when you have another condition in your body, your mind tends to concentrate on that, especially if it's painful. I know when I have sciatica, it seems worse than the RA.

Enjoy your walking!

Lyn

This must be a relief for you Fiona - am glad at least something is going right for you.

Barbara - I don't know how you can put it off. You must be very nervous. Won't they contact you?

Julie

Wow Barbara, I can understand now why you are putting it off. It's such a tricky situation if the only solution for your back problem is another operation. I can't imagine what it must be like off the RA meds. I hope you manage to keep the pain at bay to some extent until your appointment. Will be thinking of you.

Julie

Thank you Doreen and Julie,

I phoned this afternoon and was told that my rheumy will ring back by Thursday.

As for the RA, apart from receiving steroid jabs, my last one was on 19.10.09, I've been without treatment since stopping MTX in August when I came down with shingles and when my liver ALTs went high.

I find this illness very strange and as you know have not had it officially for very long. But BOY, am I fed up! I can't plan to do anything as I don't know how I'm going to be on any particular day. I wake up stiff and it takes 1-2 hours for me to get going in the morning. Then if I'm lucky, I might be able to do a few simple chores. On a good day hubby takes me for a drive and if I can manage it a gentle walk aided by my lovely new walking stick from Funky Artur (thanks for the tip girls - I've bought a couple to go with different outfits!). Some days I feel I can't do anything because of the pain and fatigue, and just want to sleep. On other days, from doing very little I find by the end of the day my hands are swollen especially in between my knuckles, which become red, lumpy and painful. I have lumps on my wrists which now seem to be a permanent feature and constantly ache - can't wear my bangles. However, when compared to others, I don't think I'm that badly off, it's just I can't cope with the unpredictability of this illness and the chronic fatigue that seems to go with it, and get frustrated by it all. I am a fixer by nature and this is something I can't fix myself, and have become impatient to say the least.

I am grateful that my immune system now seems to be coping quite well as apart from tummy upsets I've had nothing since the shingles, before I had 6 months of absolute hell and was coming down with everything, kidney infections, E-coli sepsis, UTIs, deplete in vit D, and the list goes on. At least now, apart from my back, I'm only having to deal with RA symptoms - I think?

I really appreciate reading all that you have to say about RA on the forum and it has helped me a lot:

One, you keep me going;

two, I'm learning more about the illness from first hand accounts and not just from articles.

three: the support here is amazing and I have got to met some really nice and caring people.


Love,

Barbara
XXXXXX

Barbara, thats terrible, you really are suffering! Hope your results are ok on Thurs.

Take care

Deb x

I totally agree with you Barbara about the unpredictability of RA being so frustrating!
I have got used to it after 9 years and seem to cope with it quite well now, but that's mainly because I don't work and can do things as and when I feel able, at my own pace.
Plus of course the Humira, which has helped me more than any of the drugs I've tied so far.
So hang on in there, if you can get onto anti-tnfs you should see a huge difference.
I agree also about the great support on the forum, and without the RA we would never have met such lovely people.
Good luck with your results on Thursday.

Love, Doreen xx

Hello Barbara
Gosh you been through alot and now this so sorry see you suffering so much yet you always post to others and so helpful caring despite yuor own health challenges.
Thankyou i pray you get the liver to heal asap and that u can feel top of world on anti tnf i read so many get such good beneifts from it.

warm hugs melly

Thank you, Sophie, Deb, Eleanor, Mel, Doreen & Julie,

I tend not to say much as I know there are others who are lot worse off than I am, have been suffering for a lot longer, and it is my first year living with this illness, so don't know really what to expect. BUT I do know I can count on my friends here on the forum for reassurance and advice

Today has not been a bad day and due to the appalling weather outside I've stayed in snuggled up at home with Lylie's blanket wrapped round me and my two little kittens Mr & Mrs Iggy & Coco Pop, for company.

Can I ask is it normal to have two rheumy consultants? My rheumy is retiring and for now has gone part-time and won't be able to see me again until the end of July 10 (He's going to cal me with my MRI results.) However, I have been referred to another consultant because of the plan to put me on ANTI TNF treatment and will be seeing him again on the 20.01.10. I've had my assessment done and didn't score that high, because they don't seem to take the feet into consideration and I'm now worried that I'm not "ill" enough to meet the criteria for ANTI TNF. If I don't get the damn drugs I really don't know what else to do.

Love,

Barbara
XXXXXX

PS Hope you're all keeping warm.

That sounds all right Barbara. It is a good idea to see the other chap during what sounds like a hand over period. How was your DAS score done? I remember some of the girls going on a training day for new consultants who were doing the DAS score. They said that they didn't even know their joints were sore until they were touched. I hope that something good is suggested at this appointment. Not too long to wait. What hospital do you go to?

Eleanor x

Hi everyone!
It was a freezing snow blizzard here this morning when I got up!
Yesterday, I had a feeling the Snow was coming and so I went
to the co-op, which is very near to me and carried back a fairly light
amount of milk, bread, etc.
Since then, my Spine pain has been back again and it had seemed to
be improving too, over the last couple of days!
I am looking forward to my painkillers, (second dose), at 8.00p.m!
Thank you for all the lovely replies to my post about R.A relenting in July.
(The only visible things which have occurred since then was a swollen right
hand which I treated with frozen peas and it went away the next day and slight swelling
in my left ankle which has been around for a few days.)
I had slight left hip ache when I got up this morning - but the weather is so cold and I
am 52 now! Luckily that went away pretty quickly.
Deb, I read your reply about also having an Haemangioma on the C Spine. Does
yours feel painful?
Barbara, I had not realized that you had only had R.A for a short time and really
hope that your treatment gets sorted out soon. (Also, sorry to hear of your back pain.)
Personally, I am not enjoying the cold temperatures at all and wish they would go.
I felt quite disheartened yesterday, when carrying such a small amount of shopping
did make my back pain so much worse.
It seems that I cannot carry anything without doing damage. Usually, Steve carries
all the shopping.
Steve has lit the fire in the lounge, (I can't clean that out either, so he has to do it,
but that has been the case since the R.A anyway), so I am looking forward to eating
a nice curry and being warm by the fire, lounging on the Sofa. With red wine in hand!
Warm thoughts to everyone,
Fiona