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Date: 27.10.2010
From: katknapp

Subject: so very very down

i feel so down at the moment im not even capable of looking after my four year old daughter,my mother in law has had her the past few days,my arms feel as though ive been using a pneaumatic drill all night its that horrible throbbing pain i just feel so tired with it,i dont like me anymore its not cathy anymore i feel so old
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Date: 27.10.2010
From: bsk

Subject: Re: so very very down

Hi Cathy, ring your rheumy nurse today. You might be able to get an injection or at least they can talk to your consultant for you. Don't leave it. Also, from your other posts I see your GP doesn't really understand so all the more reason to contact the rheumatology department - whoever you can reach.
I will check back later today as am going out but just want to say, hang on in there hun!
Lots of hugs
Sally
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Date: 27.10.2010
From: katknapp

Subject: Re: so very very down

sally i dont know who my rheumy nurse is,all i have is a phone number for my consultants clinic is that who i phone?x
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Date: 27.10.2010
From: bsk

Subject: Re: so very very down

Cathy, ring your consultant's secretary and tell her how desperate you are feeling and how much pain you are in. Ask if you can have a telephone consultation or whether an on-call rheumatologist at the hospital could see you today. Tell it like it is and don't leave out how down you are feeling. Also, don't let the switchboard put you off - insist on talking to someone. If you really have problems, go to A&E. If you can't look after your daughter they need to do something to help you. Let me know later how you get on.
big hugs (((())))
S

p.s. you may not have read a note I left for you on other thread about going back to 'bsk' my original posting name :)
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Date: 27.10.2010
From: bsk

Subject: Re: so very very down

I should have said, don't ring the clinic number as they won't be able to put you through. They just manage appointments there. You need to ring the switchboard of your hospital and ask to be put through either to your consultant or his secretary/assistant. Apologies if stating the obvious but it can be a minefield out there trying to find your way through the system.
x
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Date: 27.10.2010
From: ScaryFeet

Subject: Re: so very very down

I totally agree with everything Sally is saying - don't you dare keep suffering like this when there are people out there that are suppose to be helping you. You may even have to tell a bit of a fib re the help you are getting from your mother-in-law.........??

As for your GP - ask to see another one in the practice - I'd be completely lost if it wasn't for my understanding Doctor and his link with my RA consultant etc - he is helping me with my DLA claim, my depression management etc etc - you need to find someone like him who will fight your corner at times like this and get on the phone for you.

As another point, my GP practice gives steriod injections - although I haven't had them as my RA clinic does them for me but it may be worth finding out if their specialist 'injection GP' is more informed about RA and could see you as an emergency today???

I hope this helps a bit, I really feel for you as the muscles in my arms are exactly the same and I wouldn't wish it on anyone
Big hugs
Lisa
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Date: 27.10.2010
From: katknapp

Subject: Re: so very very down

Hi Lisa,ive seen 3 different doctors at this pratice none of them have been willing to help me with claims or anything they have just said i have to go to cab,i feel as though no-one believes me and i dont want to say anymore to them in case they think im making it all upxx
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Date: 27.10.2010
From: ScaryFeet

Subject: Re: so very very down

That is just so completely wrong and I am having a bit of a fume on your behalf. Were do you live? Are there any other practices near you? I can't imagine how awful this is for you and, for once, I'm at a bit of a loss as to what to say.

Next time you are at the CAB ask them how you go about raising the matter with your local NHS Trust or whatever. You are entitled to a good level of service. I would start by asking to see your records to find out what they are saying about you as it could have stemmed from the first one saying something negative then the other 2 haven't bothered to look deeper or to help you explain yourself better. Maybe you could take someone with you to your next appointment who could help you to explain and witness the service you are getting??? My practice has a patients group that acts as a go-between between the practice and patients - maybe yours has one and could help you???

I'm just rambling a bit here because I'm so cross for you - I'll be saddling up my white charger in a minute - then I'll remember I can't climb on it!!!

I'm here though............
xx
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Date: 27.10.2010
From: katknapp

Subject: Re: so very very down

The trouble for me is i live in kent but out in the sticks so my practice serves quite a few villages,ive got an appointment tomorrow and im actaully going to come out and say i feel no one believes me,i think im not explaining my symptoms to them properly maybe?i get the impression from them that its concentrated in certain areas but mine is all over the place and i dont swell or anything,they also said stress is making it worse but im not stressed or only with the way im being treated,it all just seems to much effort at the moment :(
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Date: 27.10.2010
From: ScaryFeet

Subject: Re: so very very down

Thats a load of rubbish - it isn't concentrated in certain areas - it is a chronic disease that is throughout your whole body and 'typically' manifests itself in the feet, knees and hands. HOWEVER, it also affects your shoulders, elbows, ribcage & breast-bone, calf muscles......and I know this for a fact because this is how it is with me, it is all over the place...just like you and I don't swell as such or get red and hot joints I just hurt, a lot, and have no energy and I'm very weepy and tired, and like you, everything really is too much of an effort so everyone sod off and leave me alone!!! Are you getting your bloods done regularly because this will help to show whether your inflamation factor is up, down or the same..........I feel so vindicated when I go to see my GP or Consultant when I feel bad and woe & behold my blood results show that something is wrong......

And at a risk of over-stepping the mark (story of my life I'm afraid!!) - I think you are stressed, very stressed and quite rightly so - you are ill and not getting the right treatment which is affecting how you live your life - I have only had to read a few of the posts you have made over the last few days to see your stress-ometer is off the scale!....and thats OK!

If I can help you to prepare for tomorrow you can always email me directly - let me know if you want my email address - no worries if you don't

Lisa x
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Date: 27.10.2010
From: katknapp

Subject: Re: so very very down

i only get my blood done when i vist the consultant and ive only seen him twice,now im on sulfasalazine i have to have them done every two weeks and im due for the first one next week,my esr has been very high last one was 71 i think so they must be able to see that im not making it up,maybe its me just being paranoid?i dont think im desccribing it right or getting my point across im rubbish like that,i would appreciate your help lisa thank youxx
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Date: 27.10.2010
From: Shirley

Subject: Re: so very very down

Hi Katknapp, Lisa is so right when she says "I feel so vindicated when I go to see my GP or Consultant when I feel bad and woe & behold my blood results show that something is wrong."
Some days I wonder if its all in my head and almost feel a sense of relief when regular blood tests confirm that something is wrong and I'm not imagining it. I'm surprised they haven't been monitoring this more closely for you and hope you get some proper support in place from now on. x
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Date: 27.10.2010
From: bsk

Subject: Re: so very very down

Cathy, I go in pain and my blood results are all ok because I'm on steroids! So imagine how I feel! Have you rung the consultant yet? Sorry to be bossy but you can ring your consultant AND see your GP. In your shoes, I would do both. As I said earlier, GP's aren't necessarily the best people to understand. When I was really ill last summer and couldn't move and before I spent 10 days in hospital one of the gp's in my practice said he didn't know what I was complaining about! He hadn't even seen me in person and when I pointed this out he replied that I 'might as well come in' to see him! I didn't as my own very good gp was back from her holiday and got it straight away. I'm telling you this because even in the very best practices, which mine is, there are some not very sympathetic doctors.
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Date: 27.10.2010
From: katknapp

Subject: Re: so very very down

Hi Sally i have tried phoning twice now and cant seem to get through,im seeing a different doctor tomorrow hes new to the pratice so hopefully he might be a bit more understanding,....i have just done something im very proud of...I went for a walk!!!!ok it was only 5 minutes and i had to force myself and i will pay for it later but to me it was an achievement!!!!
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Date: 27.10.2010
From: bsk

Subject: Re: so very very down

Hi Cathy, good. It is small achievements that add up to something more. Sounds like you've done quite a bit today - coming on here and telling us how things are, trying to call your consultant, going for a walk. Not bad at all :)I hope you get on better with the new doctor tomorrow.
xx
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Date: 27.10.2010
From: katknapp

Subject: Re: so very very down

i think what prompted me was going on the wii fit for the first time in 4 months and finding ive put on 13lbs lol imagine my shock when my little avatar expanded on the screen all my family are slim and theirs runs on and mine puffs along behind them all like a little fat ball,and i thought maybe a bit of air would make me feel a little brighter im letting this get to me which i swore i wouldnt,i just couldnt stop crying this morning my little katies on half term and im not able to just spend time with her i feel so guiltyx
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Date: 27.10.2010
From: bsk

Subject: Re: so very very down

Just remember, small achievements. As for guilt, it's not your fault.
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Date: 29.10.2010
From: bsk

Subject: Re: so very very down

Hi Cathy, how are you doing today?
What did the doctor say? Hope you are feeling alright.
love S
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Date: 31.10.2010
From: charlotte

Subject: Re: so very very down

I know how you are feeling. I was in similar state a few weeks back. My GP wouldn't help, rhuemy sec wouldn't do anything. I ended up looking on the hospital website at email addresses. Made a guess firstname.surname of my consultant a wrote how i was feeling on email. Got a reply the next day and saw him 4 days later.

I got a steroid injection to get me through until my next appointment

It's worth a try in future. Chin up
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Date: 31.10.2010
From: charlotte

Subject: Re: so very very down

Also - sorry just reread thread - you can contact PALS at your local nhs trust - they are the patient liasion service. They can take up any issues that you have which aleviates the extra stress on to you.

I do hope you get to see someone soon. I too am on sulfaslazine. The rhuemy did say maybe its not strong enough for me. But got the setorid so i can contiune with my wedding this week

take care
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Date: 31.10.2010
From: Lynn B

Subject: Re: so very very down

Charlotte, Congratulations, and wishing you a very "Happy and Healthy" future. Have a Fabulouse Wedding Day!.
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Date: 31.10.2010
From: bsk

Subject: Re: so very very down

Have a fabulous day Charlotte!
xx
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Date: 08.11.2010
From: katknapp

Subject: Re: so very very down

Hi all sorry i havent replied,have had a bad few weeks and my four year old has been ill with chickenpox and middle ear infection!

well i went to the doctors and again just felt as though he didnt understand me i really feel as though im bashing my head against a wall,i have just 2 weeks ssp left and dont know what to do how can i work when i get up in the morning with my arms throbbing as though ive been using a pneaumatic drill all night and im so tired im crying with exhustion,my legs are wobbly i just give in!!!!
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Date: 08.11.2010
From: charlotte

Subject: Re: so very very down

Thanks, I had a fantastic day. The steroids and adrenalin kept me going - was perfect

Katnapp, have you managed to get in touch with your rheumy? You really need to pester, please don't give up - you deserve some relief to help you enjoy your children!

Whats your rhuemy name, hosp? Would be happy to find out email address for you..
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