Hi all just wanted to say that when ever I go on this site people are talking about there surgery and the outcome of it etc and how great there ra specialist is. How do you get this treatment ? I have now live with ra for 34 years and had one operation on my foot 20 years ago which was a complete disaster as for the after surgery effects and still years of having to put up with difficulties from this surgery has made my life horrible.I don't get any support from my ra consultant apart from we; will see how you go on with the increase of your meds; My right hand now is causing considerable concerns withme and is sweeping to the left considerable thus making it awkard to pick up.I have no support from my husband and have to run and take care of his company and run the house on my own.Im done with it and don't know where to turn.take care everyone xmags

Oh Mags...sending you lots of hugs.
I know just how you feel, you certainly won't hear me talking about how great my RA consultant is.....I haven't even had one for the last 3 years ! I know there are also lots of us in the same boat, with a useless , unhelpful rheumatology department. I think the ones that get good RA care are in the minority, but when reading about their experiences it does make you think "why can't I get care like that?"
Is your GP supportive? Mine is good, I am having a knee op soon and he referred me to the orthopaedic surgeon, it has all been arranged without any input from the rheumy dept ,so if you are having problems ask your GP to refer you to the orthopaedic surgeons for your foot to be sorted out. The same with your hands, ask to be referred to a hand surgeon, your GP can do this.
I'm sorry life is so hard for you with no support from your husband. Keep posting and at least we can give you virtual support on here.

Love and hugs, Doreen xx

Hi mags

It sounds like you could do with making some positive changes in life and so here are things I'll tell you now have helped me lots

1) knowing I cNt change my crappy rheumatology service and so fighting for what I absolutely need and then leaving them well Alone. Take the good and leave the bad.

2) do more nras things and feel I'm making a positive difference
3) do some new hobby/ interest I'm doing craft at the moment but you can try anything like researching family tree or watching films to joining a book club
4) counselling! It's been the best, single, biggest help for me
5) get going with spiritual uplift try your church or singing or both
6) get courage to ask some what if questions:
What if I didn't clean up today what would happen? What would happen this week?
Month?
What's the worst outcome of this scenario?
What's the best possible thing that could happen?

If you imagine yourself doing well in 2 yrs time- what would this look like? Where would you live? What would be happening?

How to get there? Start planning next weeks small steps

I also know people who's lives have improved greatly for making life choices rather than rolling with the punches (obviously sometimes there are no choices but on the face of it mags it seems you have a few) There Are expert patient programmes about that can help too.

I also wonder how much responsibility you are taking that isn't yours you need to off load?

Sorry if blunt
I'm in hospital so blaming the meds!!!

Jenni xx

Hi Mags

Sorry you are feeling so down at the moment. When you feel like that it is hard to see any positive in anything but you could do worse than listen to what Jenni says. It is good advice and you must try and take at least some of it on board and you will start to have a more positive outlook. Jean suggested that you try to get a different rheummy team if it is possible for you to travel. This is also good advice. I really hope you feel much better soon.

Love Sheila x

Dear Mags
I am so sorry that things are so awful for you right now. Something or things need to change so that your life can be enjoyable again. It sounds like you are trying to do too much for a start and there must be some way to lessen the load. It might seem difficult right now to identify a way forward, and maybe you need some support in order to do this. You have made the first step by identifying that you can't carry on like this and saying so on this forum, so that's a good start. I think a visit to the GP might be the next step. Tell him/her how you are feeling and what you are thinking. I think counselling might be a good step to help you work your way through this situation and tackle issues at home. I have just asked my GP for counselling and he has agreed to refer me so I'm not suggesting something that I wouldn't try myself. It also sounds as though your treatment needs addressing too, so again it is your GP who you need to speak to about this as s/he is the 'gatekeeper' to other NHS services and treatments (and if the GP won't listen then change GPs like I did). Do you have support from other family members or a friend that you can turn to? Don't give up Mags. There are so many avenues you could take to find a positive way forward. Meanwhile keep posting. I and many others on the forum will do our best to support you through this difficult time. You are not alone. Naomi X

Hi Mags,

Sorry you are low at the moment, the weather too has a lot to answer for. As the others have said why don't you consider changing your consultant. It may be the best thing for you. Things can only go up now, try as Jenni says to look forward and plan ahead and give yourself things to look forward too.

Hope you feel better soon,

Take care and hugs from me too.

Lorna xx

Hi again mags

You can get inpatient treatments like that still today in bath hospital for rheumatic diseases

Ask to be referred

People go there from all over the country, actually, all over the world!

There is also a private rheumatic hosp I believe if you wanted to go down this route.

Jenni

Hi Mags, I am so sorry you have reached this desperate stage but not at all surprised after you have suffered for 30yrs with RA, I take my hat off to you for remaining sane. I agree with every one before me. I just wanted to say that I was in your position 2yrs ago having had R A, for 8 yrs& had treatment which ticked their boxes but not mine. although I passed the criteria for having anti TNF .Because I instigated to have the das test they found a reason not to give it to me saying I had Firomyalgia! At this point I was so low I realized that they had some hidden agenda against me & basically they were just going to allow me to go down hill. for ever.
I took a long time be fore seeing another consultant privately In another health area who was happy to put me on his list. He,s kind & helpful, now been on cimzia for18mths & had a hip relpacement, life is sooo much better. I urge you to make that change again until you find some one good again. Are you on any anti tnf? if not its worth a try. ps I havn,t been on the forum for ages because our computer hasn,t been able to get it, but it crashed the other day & ever since then its been OK love & best wishesRosexx

hi everyone thank you for your support as usual on this forum had a lot to deal with so haven't had chance to thank you all.Things are still the same I am just waiting for my next appointment at the hospital and I promise i will bring up how I am not happy with my treatment and my health long term.Things have got to change! To Sylvia thanks for your reply it sounds very familiar when you speak of your hubbys denial what a shame we are not closer in distants we would have a field day ha'ha'I will keep in touch of my progress (if any) and love to you my friends and a big hug to you jean B are you still doing work at the hospice? Take care everyone speak soon.x mags