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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,081
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Am feeling well fed up today. I am having probs at work because I'm still trying to do a full time job in part time hours and I had a lovely holiday from the RA symptoms after having a depo before christmas. Now it's all creeping back slowly but surely. My wrists feel like they are broken again and are keeping me awake at night and my feet are killing. I'm seeing the rheumy on Wednesday but don't know what to say to him as I only started taking Hydroxy with the metho in December and know he will want me to give it a bit longer but can't have another depo as it hasn't been 3 months since my last one. Feel like it's hardly worth going. Then to think some of you are considering leaving the forum because of an ill judged decision by NRAS to just completely remove PRIVATE messages without any warning has just about capped my day off. I didn't use the PM much but can understand your feelings, especially if you had saved info and contacts in them.  Julie
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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 Oh Julie, hope the hug helps a bit. I bet that was the last straw for you, to think that you may not get the support you have come to count on! We are all still here for you, NRAS won't break us! I'm so sorry you are feeling down, it's probably the combination of thinking all your pain is coming back and working too hard. Would it be possible for you to have a few days off to get some rest? Your rheumy might add another drug to the two you are taking when yo see him on Wednesday, or he may increase your hydroxy, I don't know if you are on the full dose yet? Tell your rheumy exactly how you are feeling, write it down and give him the list if you think you won't remember everything. I do hope you start to feel better soon. We've all been where you are and know what you are going through. Lots of love and hugs, Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 1/5/2010 Posts: 89 Location: Mereworth, Kent
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Hi Julie,
It is an endless waiting game, isn't it? We always seem to be waiting for the next thing to work ( or not!). I was allowed to have my depos every 6 wks when things were bad, so it maybe worth asking, especially as they will want to wait a bit longer to see if things kick in.
No wonder you are feeling fed up, I am dreading coming off my prednisolone in case I crash. I hope rheumy helps you out on Wed.
I didn't know about the PM - will have a look on the forum to find out more. Can't think why they need to do that.
Take care
love
Alison
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Rank: Advanced Member  Groups: Registered
Joined: 12/10/2009 Posts: 89 Location: Braintree, Essex
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Hi Julie,
I agree with doreen, dont not go it could be you need higher dose? it's not good when you feel crap,maybe a few days off work,thats what I do when feel low, hope yr feeling better soon and you get the right response from rhuemy
sending hugs too love corinne xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 561
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Hi Julie i agree if you could get some time off work and stay in bed and have a rest , also take the pain killers as constant pain wears you down, really hope you can get some relief soon
Sophie x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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Hello Julie sorry hear u suffering so with rotten RA,yes some time of would help and any help re disbailty law advice re change to work load ahs thisbeen offered at all. im not expert at all,others have been discussing work section i been following that for input myself. sending u big hug t care lv melly cuddly cats make my world seem so much more fun
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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Dear Julie,
I feel so sad reading your post- it is SO deflating when the pain begins to return.
When the pain is at bay it is so easy to forget that acute feeling and so when it comes back it is almost worse.
I would have PM you tonight but alas, there is no longer that option!
You may not feel like going to see the rheumy (I have felt like this often too) however it might be worth it to hear what they suggest. One can have a jab into local joints so say your wrists are the worst, possibly they could be injected.....
If you have my e/m , please post me a message to chat...
Much love always,
Amanda
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Rank: Advanced Member  Groups: Registered
Joined: 12/8/2009 Posts: 124 Location: Wolverhampton
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So sorry to hear you are feeling this way. If work is getting too much, then take a few days off sick - hope you go to your rheumy tomorrow - he may be able to help you further, keep faith.
Hadn't realised about pms will find the thread relating to this.
Nina xxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 872
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Dear Julie,
So sorry u feeling down Julie,
hope u can manage some time away from work if possible, could u discuss with HR, explain current situation, see if they can help a little with flexibility?
Try to make sure u go to your appointment wont u? Sometimes when u not got much hope in something is jsut when things turn out better than expected so hope u have a positive appointment xxx & will be thinking of you,
Its such a shame about recent ructions on here - i still think NRAS are an excellent charity and they do some really great high profile work on our behalf but perhaps have not understood the impact this could have,
I personally think the light hearted posts are so much more than that - its well known that laughter is the best medicine - sometimes we dont have much to laugh about and a bit of light relief is more therapeutic than is realised, any kind of discrimination or harrassement could be quickly moderated if the right tools are in place,
Let us know how things go along and meanwhile - carefully now, follow these instructions:
put your right hand middle of your left arm and left hand middle of right arm and squeeze very gently
there u go - that was a very gentle hug FROM me xxxxx
Love Liz xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Hi Julie So sorry you feel as if you are back to square one - I think we can all empathise with you on this one. It seems fairly clear that the combo of meds you are on isn't working. I really think you should ask about the possibility of ant-tnf. Explain to the rheummy that he/she doesn't have to put upwith your pain 24/7 and if he/she did, they would understand why yuu need this treatment. Take care Julie. Much love and gentle hugs Jeanxxx PS Never even think for one moment that you are going to get rid of us lot - not a chance  we can always e-mail or use the private facilities on Facebook.
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 872
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im on facebook too, feel free to add me - Liz Buckley ~ my avatar is black n white baby pic!
better say NRAS in message just so i know who u are! xxxxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
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Hello Julie
Sorry to see that things are going downhill.
Hope you start to feel better soon, can't really give any advice about meds because my knowledge of it is very limited, but having a few days off work would help.
To of had a holiday from RA and then for it to start up again must be so upsetting. Just seeing what/how it would be to be free of this illness for a short time makes it all the more worse when it starts to go pear shaped again.
Thinking of you and sending you a big (((((((((HUG)))))))))))
Paula x x
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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I cannot seem to find you Liz but will try again....(FB)
Amanda
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,081
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Thank you all so much for your replies and kind, wise words. I was feeling so miserable yesterday. I work term time so am trying to manage through this week as I have next week off anyway. I don't want to take any sick leave as I have already just passed my adjusted sick leave 'trigger point' at work as I had to have an op on my feet this time last year (just a bit more pressure to consider). I can't actually say what I do as I am a civil servant and there have been loads of warnings recently about disclosing info on social networking sites so can't go into too much detail. My employers have played the DDA game in terms of getting me adjusted sick leave levels and new equipment but have not considered work load, not only in terms of DDA but also due to the fact that I only work 28 hours a week. It's been mad for ages and I finally reached a point 2 weeks ago where I told them that they only provide support when I reach crisis point and am virtually having a heart attack as I can't keep up with all the work (particularly as we have tight legal deadlines involved) and I am not prepared to put up with it anymore. My manager said he was going to try to find a way for me to move to a new area of work but as of yesterday - hadn't bothered to speak to me about it at all 2 weeks on. Anyway, just as he was leaving today - he's told me he wants to see me tomorrow morning. Will have to see what that brings. As for the RA - have got to pull my socks up, stop sulking and deal with it  . I know this happens and think it was just the combination of work, not sleeping, being busy with Jim etc - just got to me. Brave face back on and will play it by ear with the rheumy tomorrow. Thank you all again. Julie PS Jean - the rheumy says next step if hydroxy doesn't work is anti-TNFs but am scared 
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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Dear Julie,
Do you have my e/m address??? I can't remember are you on FB?
I would LOVE to PM you but oh yes, I am unable to!
I SO understand your fear re anti-tnf, I am exactly the same....I guess something deep within you just has to resign yourself to the fact that this disease needs to be fought.
Hard though. Another glass of wine is needed tonight.....after todays threads......
Love always,
A
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Hi Julie, Sorry only just read your message as dont get chance to come on during the day. You must tell the rheumy how you are feeling, if the meds dont work its down to them to help solve the problem and to get you out of pain. How can you possibly continue to work like that, and also with no proper support from your employers. I can see that taking sick time wont work at the moment, and as you say you have next week as holiday, which is good. I hope you can get the rheumy to help you, and quickly. The anti TNF are a worry, but it may be the right way to go for you. Like Amanda I would love to pm you, but oh wait!! I cant can I? We were having too much fun with it!! If you are on f book, I am Barbara Awcock - London photo of me and hubby. This is for everyone on here of course, would love to be able to keep in touch properly despite being told off on here. Julie, you have been there for me when I have felt very low, I am here, along with everyone else, for you now. Thinking of you for tomorrow x  BARBARA
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 690
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Hi Julie, no please don't say you have to pull your socks up, when your in pain and suffering like this and everything feels like a struggle, the last thing you need is work giving you a hard time.
Is there any chance of you getting another steroid jab to tied you over? I also think it would be a good idea to tell your rheumy exactly how you feel and if the drugs are no longer working perhaps you could suggest to your rheumy starting Anti-TNF treatment. I was initially very scared, but having exhausted the DRARDS options I was left with no other alternative than to try an ANTI-TNF.
I appreciate that keeping work related deadlines when your ill is not easy and honestly don't know how you've managed. I know that in my line of work, I also have to meet legal deadlines, I wouldn't be able to cope.
Good luck with your appointment tomorrow and will be thinking of you,
big cyber hug,
love,
Barbara
XXXXXX
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,081
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I'm so touched by all your replies. Just 3 days to make it through and then will be off.
I was about to send you my e-mail address Amanda (to get a copy of the info Jenni had posted) when I found out about the PMs being stopped. I am on FB as Julie Marshall but apparently there are over 500 (so common!). I will look you guys up on there when I get a chance.
Thanks again.
Julie
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 854
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Hi Julie,
Any RA related time of work is not allowed to be counted as sick leave. Your GP just needs to put RA as the cause of your ill health and you are covered by the DDA.
We can all relate to how you are feeling at present. There is not a magical cure but you need to look after yourself . Can I advise you to write down how you are feeling, where and when you hurt or whatever and what, if anything, you did or took which may or not have helped. Bullet point this and give it to your consultant. It gives a far better picture of what is going on and what can be suggested to help you in the longer term.
So sorry that you are at this devastating stage but you can and will be helped.
Eleanor x
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,081
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Went to see rheumy today. Don't qualify for anti-TNFs at the moment as pain/inflammation is only in feet, wrists and hands at the moment. Asked about another depo and he said no. He saw that my wrists are quite wonky and I explained that my feet are spreading in a most unusual way (you know when Mr Spock does his hands in Star Trek when he says 'live long and prosper' - well that's what my feet are like  ). He didn't even look at them but has asked me to increase MTX to 25mg per week still along with the Hydroxy and Naproxyn (full dose of both) and sent me for x-rays. Was a bit disappointed as when this happens usually, I go for the x-rays then go straight back to his office to look at them with him. Unfortunately, the clinic was heaving and people being sent for x-rays were not coming back for about an hour so he says he will look at the x-rays later and will contact me if there is anything I need to know before I see him again in 6 months. He thinks we may have to add yet another drug to the cocktail but I don't know what he might be thinking of as have already failed on sulpha. Back to ice packs on wrists and painkillers now. Julie
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