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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Hi all, well, I got through to the secretary this morning, and she told me that the consultants has already refused two other patients an earlier appt as they are so busy, and that my appt in March was not too long to wait. I explained about the pain and swelling and flares, she aske dme what meds I was on, then told me to see my GP, who has already refused to give me any meds until I have seen the rheumy. She then suggested I call the nurses and leave a message for them to callme back within 3 days, so thats where I am now. It seems like a private consultation may be out of my price range, I coluld maybe stretch to around £120, but it looks like it will be more. I lef a message, so if I dont hear from them with anything positive then I will contact PALS. I cant bnelieve that you tell them you are in pain, and they say they cant do anything!! Its been a really hard day today too, the little girl has been really hard work, she has lots of tantrums, and is always up to mischief, so I am always having to chase after her, luckily the little boy is much calmer. I feel exhausted now, and will go to bed by 8.30pm, its not much of a life is it??  BARBARA
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,081
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I can't believe it Barb - We shouldn't have to pay for private consultation. If the pain continues, I wonder if it would be worth presenting yourself at A&E - I don't know if anyone else has ever done this?
Julie
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Hi Julie, the secretary did suggest going to A&E if it gets unbearable, but the thing is, I just tend to fight it, and get on with working with the babies, so only start to think about it when I finish work, or get back from Sam's house on the two days I have both of them. Right now its really painful in ankles feet knees hips neck and shoulder, my wrists are a bit sore, but not as bad as could be, also my back really hurts due to the double buggy and lifting it onto buses, so partly my own fault I expect. Will let everyone know what happens. Have made another GP appt for Friday, but could only get to see the one who said she wouldnt prescribe anything until I hfad seen the rheumy, so probably pointless.  BARBARA
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Rank: Advanced Member
Groups: Registered
Joined: 12/8/2009
Posts: 35
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Sorry you are having such a terrible time. How frustrating to feel there is nowhere to turn. Hope things get better soon. Jo xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Oh Barbie, I'm so sorry you are suffering like this.
At least the nurses should be able to increase your mtx so hang on to your GP appointment for Friday because if it's authorised the GP can prescribe it.
Is there any way you could make your days a little easier? If you stayed at home with the babies, they could watch CBBC or something (someone will be after me for suggesting that!) . But even if it's just an hour while you sit with them, it gives you a chance to sit down. Or you could do colouring and drawing with them or making things, something you can sit down to do, even reading stories.
If the nurse doesn't get back to you you should definitely get in touch with PALS but fingers crossed that they will.
Love, Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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So sorry for you. I do think the private appt is worth looking into. I think you can probably be seen for less than £120. I have had two rheumys in the last two years.....one was £180 for ONE appt! and my new one is half!
Amanda
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
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It's hard to beleive that they are treating you like this, I know this is not a solution to your problem, but could you not go to the chemist, ask to see the pharmacist and ask if there is any over the counter painkiller you can buy, just to top up what you are already taking.
A few months ago my doctor prescribed me just bog standard paracetamols to take when needed on top of what I was already taking. She said that if taken regular they are a good form of pain relief.
I wouldn't give up with the hospital either. If I phone up to speak to my specialist nurse, I know that if I ring about 10 minutes before clinic is due to start, one of them normally answers the phone.
Hope you get something sorted soon.
Love Paula x x
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 331 Location: South London
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Barbie girl
Well if you are having a flare and continuing to work its only going to make it worse. Sorry honey but you are going to have to prioritise yourself. I know with looking after children its hard as you ahve so many people depending on you, but you need to consider your own well being. I personally would pay the £120 to get things moving on. You dont have to pay upfront and with my guy I just rang back after i had the invoice for about 2 weeks and then put it on a credit card which gave me another 4 weeks to pay so I finally paid up neary 2 months after the appointment. or you can carry on and be frustrated and in pain and remain at an impass.
I hope you get sorted soon.
Mari
Ps are you taking anything at all?
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 64 Location: Sussex
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Hi,
I feel so sorry for you its just not fair, this disease is so hard to contend with at the best of times, let alone when you are in a flare and cant get get any help....this is the time that you need it,
I too would be tempted to go to a & e, who knows what damage your joints are taking with this flare, good luck and I hope you feel better soon,
Ellie
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 690
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Hi Barbara,
I would take up Ellie's suggestion and go down to A&E, to see the on-call rheumatologist.
Good luck,
Love,
Barbara
XXXXXX
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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Hi Barbs This is not on,A and E wouldnt hurt if no luck with gp. I have had result like doreen mentioned where Gp rang and me to helpine then between 3 of us and agreement over what to do done which Gp then gave me the extra medication. not very encouraging for us both considering we go same clinic. sorry late replying . 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: 854
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Hello Barb,
This is such a shame but I think that Mari's post was blunt and yet to the heart of the matter. We are told to rest when we have a flare yet you are looking after children, one of the most difficult jobs you can do. Sometimes we just have to put ourself first and do what we know is best for us - rest. I am aware of the likely financial impact of doing this but perhaps the parents would consider having carer's leave and look after their own children until you feel better. Sometimes more/different medication is not the answer but understanding that what we do may be provoking an already bad condition/flare.
I feel so sorry for you but it seems to me that there is a time to just say enough is enough and put yourself first.
Eleanor x
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Thanks everyone, I know all of you are right!!! Honest Doreeen, I do sit with them for part of the day, and encourage them to listen to stories, draw, play doh etc. But the parents expect me to take them out to groups, or just a walk etc. I havent been doing the walking though, its too much. Mari, yes I know you are right, I have to make this decision and now not in a month's time! Will look into private consultation of I dont get anywhere by the end of the week. I havent heard so far from the nurses, hoping to by tomorrow, as the GP appt on Friday afternoon. I am taking paracetemols as well as the tramadol, was advised to by the last doctor at clinic, but not helping. Maybe just me, thanks Paula If it comes to it I will go to A&E Ellie and Barbara, know you are right. Eleanor, thanks for idea of carers leave, dont know much about it, but parents might, it would be good to be able to get a few weeks off, then maybe I could go back, but do less hours, or have just the one child. Melly, I hope they can get together and come up with a plan, but knowing the GP I am seeing, she is fairly new to the practice and maybe doesnt want to tread on any toes. Will hopefully get call fromt the nurses tomorrow, I have my blood test on Friday morning at the clinic, but its difficult to talk to the nurse who does it, shes quite a character (??!!) and brushes everything off. Will try to see another nurse based in the office if I can. Anyway, had a better day today, not so full on, Amelie was much calmer so that helped!! Let you all know what happens, and thank you all for the comments, I think I need a kick up the backside to get myself sorted out, even hubby keeps on at me!!  BARBARA
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hi Barbs, I`m so sorry you didn`t get the result you wanted from your rheumy`s secretary - I really don`t think much of their response, as March is still a fair way off, especially when you are struggling. I hope the nurses ring tomorrow, and they can give you some help. Take care, Kathleen x
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 856
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Hi Barb
I know how you feel- I'm in a lot of pain at the moment, not been good since before Xmas . could hardly walk last 2 days.last saw rheummy in sept who said to increase sulf if it gets worse, I have but it doesn't seem to be helping much. I'm taking diclofenac 3 times a day + paracetamol when needed, which does help but i don't like taking so much. I saw GP before Xmas he said bloods showed 'activity'. I've had 2 appointments cancelled and can't get in until March either even though rheumy said he wanted to see me in 4 months rather than 6. Hopefully the nurse will be able to help you. Mine is only availble at certain times takes ages to get back. I don't think it's right that we should have to consider going private.
Hope something is sorted for you soon
Take care and look after yourself.
Maria x
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,081
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Hi Barbara, sorry to hear you are no further on yet. I hope you don't mind me saying this but whilst I agree it would be the best idea to have a word with the parents to try and get a break from work, please don't keep blaming yourself for the pain you are in. You are only doing what a lot of us do in trying to carry on doing what you have always done. Might not be the best idea at the moment but I can fully understand why you are doing it (as a parent that had a brilliant childminder for 4 years and someone that still has to work for financial reasons). I know at the moment things are really bleak and you need rest, but having said that, if you could get the right medication, there would still be a lot you can do, even if you have to adjust the hours you do or change the way you currently do things. Please keep badgering until someone listens to you, it took me nearly 3 years and I wish I'd have been more assertive a lot earlier! Good luck with the nurses - tell them straight how you are feeling. Take care.
Julie
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Hi Julie, I have p m'd you, but thank you for your post x BARBARA
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Rank: Advanced Member Groups: Registered
Joined: 12/4/2009 Posts: 331 Location: South London
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Hi Barbie Girl Good luck tomorrow with your tests. Sorry that its all taking so much out of you but I think most of us had similar problems trying to get the care we need. Its very hard to be assertive when you dont know what you should be getting. (if you know what I mean)  I dont know what tramadol is strength, type of drug. I take that its just an over the counter drug. I am on hydroxychorlquine and sterods and only the sterods seem to be working so far (still early days) i take ibuprofene occassionally but like you coast with the pain. I hope you get sorted soon. take care Mari
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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all best lovely barbs hugs from me may gp seek more senior gp input if so needed,glad day was some what easier for u. let me know how u get on friday be thinking of u. u will need time off for any new meds to kick in give body time to rest,maybe book in a holiday slot with parents. yes the nurse from office is so kind i had her last appointment for bloods bp,such bubbly aussie girl. 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: 872
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Dear Barbara,
Sending hugs and a big BIG burst of assertiveness your way.
You are doing the right thing sharing your worries and i can really identify with how you are feeling BUT you have to get tough and think of YOU and you have to do this right now - YOU are important and you cannot carry on like this.
Don't worry tho' cos you've got us all right besides you but you cannot take the potential risk of permanent damage any longer.
-Have you made a list for Gp appointment?
Definitely take a list, not just of problems but also what you think you may need doing about them.
-Have you seen an Occupational therapist to advise on support around the home, i found this so invaluable at the beginning (....after a whole year of waiting for diagnosis.... when i finally realised there were amazing people out there who understood and could help)
-If you havent seen one put it on the list for GP discussion as this is essential, practical help.
-Never mind worrying about the gp being fairly new to the practice! If she is your GP she has a duty to do and is very likely being paid a six figure salary to do it - so put your worries about her feelings away - she is your GP and she has got a job to do. i get on with my GP really well and she is lovely but a year to diagnose was far too long - GP's are most usually not the specialists in particular illnesses but they are our direct link to the people who are... -
-Tell her you cannot carry on like this - you need something done and you need it done now, not in March!
-Helpline - i think from posts Melly is at same clinic as you and mentioned GP / helpline discussion
Keep badgering and stay positive xxxxx
-A and E option if no further forward
Re: Carer's leave / parents - reassessing situation - i would definitely speak to someone like citizen's advice about work issues. They may be able to help you make some decisions and they can also advise about finances etc, i found them useful and supportive in the past especially when i was first poorly. They will listen to you, and the more people who do that the better.
Take care, will be thinking of you xx
....and definitely plan some little treat just for you - something for you to look forward to and reward yourself for being assertive xxxxx
Lots of love ~ Liz xxxxx
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