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Date: 26.08.2009
From: Phil J

Subject: Hi all new here and fed up

Hi all just found the site am glad to be able to share my thoughts with so many like minded people. I was diagnosed with RA some 10 years ago now although its only really got bad over the last 2 years. Had to give up work when the pain and stiffness got unbearable and since has only got worse. Been on the usual drugs metho etc but sadly to no avail.
Getting kinda fed up now and seems as though am trapped in a tunnel with very little light at the end of it, does anyone else have these feelings or am I just feeling sorry for myself? I try and stay positive but just recently its getting harder and harder, had the indignity of wheelchair use this past 6 months and that light just seems to be fading more and more.....sorry for such a downbeat first post but its hard for family and friends to understand so am bugging you guys......
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Date: 26.08.2009
From: Kirsty

Subject: Re: Hi all new here and fed up

Hey, don't worry - we all get like it! Glad to have you joining us!
We're all here to support each other so don't apologise!

What medication are you on?

BIG HUGS!

xxx
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Date: 26.08.2009
From: val h :-)

Subject: Re: Hi all new here and fed up

hi phil j welcome i have oa well think so any way time will tell on that. we all come on here to shout and stamp our feet as well as have a moan we all understand firstly u do not want to let on to others how hard life is and not to sure if they would realy want to know or understand how every little thing takes so much energy even cleaning teeth. we do understand and feel free to come on and let us know how u feeling wether its a good day or bad we smile for others but in the middle of the nite it is so hard to cope with it all and usually one of us up and about lol.and u r not bugging us we love new friends
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Date: 26.08.2009
From: Phil J

Subject: Re: Hi all new here and fed up

hi Kirsty, currently on sulfasalazine which to put it mildly is useless, just seems whatever my Rheumatoligist tries to pump into me is also ineffectual, sometimes feel like banging my head against a wall after an appointment, is it just me or are they just peeing in the wind and just guessing.....
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Date: 26.08.2009
From: val h :-)

Subject: Re: Hi all new here and fed up

from what some people have said it a bit trial and error to get what best for u
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Date: 26.08.2009
From: Lynne

Subject: Re: Hi all new here and fed up

Hi phil welcome .. I'm wondering about your meds. I've had RA for over twenty years. Been on most stuff. Have you heard of Anti TNF drugs . They are the new biologic drugs very expensive. But they work very well to slow the disease down.
There are a few of use in here onthem you sound like you would qualify to get them they make such a difference.

Go back to your rheumy a d ask about them they will try and put you off but you need to be firm. Take someone with you for support. Honestly phill I would not be without it.
Hope you feel better soon . Take care
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Date: 26.08.2009
From: Angela

Subject: Re: Hi all new here and fed up

Hi Phil,I have sero negative arthritis,only diagnosed the last 18 months, but looking back know I had it sooner now, and am on sulfa like you. I dont think mine is doing much either.
I was in that tunnel not so long ago, and went through the wheel chair bit also.It is good that you are able to express yourself, I did the same and felt loads better after talking to some of the lovely people on here.
I have found the only way forward to keep me positive is to keep researching,asking questions, and learning how to manage my condition as independantly as possible.
As we all know each day is different,so I am trying to moniter everything I do, eat, drink and feel,and also what the weather is doing
on a daily basis, and if I get a flare up, then I can look back and see if there is any particular reason why I may feel bad, and if I find anything that I can change I do and see if it eases things.
I am trying all kinds of trace elemants and herbs as well to try and get any bacteria out of my body.
Doing all this makes me feel that I am being pro active, and not sliding down the slippery slope of no hope, which is were I was going, and even if I eventually go down, well at least I have tried.
I hope this helps, I would be glad to share any ideas with you if you need a boost.
Take Care
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Date: 26.08.2009
From: Lynne

Subject: Re: Hi all new here and fed up

Hi angela how are youvwelcome to the forum . What type of artritis have you got. What meds you on.
If you're Drugs arn't working don't suffer i'm silence there are many other drugs out there to help. Take care xx
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Date: 27.08.2009
From: Brenda

Subject: Re: Hi all new here and fed up

Hi Phill,

I am new at this site also, i have sero negative arthritis also.. The people on here are wonderful, they will be there for you when you need them good and bad, I just started MTX and we shall see if this work..
Some time it helps to be on here , family and freinds can be supportived, but you can really expressed your self and we can understand what you are going through as, family can only just get an idea, coz they are going through the pain ect...

We are all here for you xx
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Date: 27.08.2009
From: val h :-)

Subject: Re: Hi all new here and fed up

hi phill hope things a little better to day after all the girls made u welcome and do not worry there r some men so stick around they will be on some time. wishing u a better day try to enjoy any sun u get does help a little. :-)
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Date: 27.08.2009
From: Lynne

Subject: Re: Hi all new here and fed up

Are you the same phill that was asking about the Anti TNF a while ago. Did you get them? Let us know how you get on. Xx
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Date: 27.08.2009
From: Kirsty

Subject: Re: Hi all new here and fed up

Angela, that's a really good idea to keep some sort of record...have you noticing it helping at all or noticed anything giving you flare ups? I've been told Cucumber doesn't help...but I don't notice anything. And welcome :)

Phil, to be honest I have no idea what Sulfasalazine is - I'm fairly new this stuff, I'm just seeing what people are on in case my Rheumy mentions anything. Hope you don't think I'm being nosey!

xxx
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Date: 28.08.2009
From: val h :-)

Subject: Re: Hi all new here and fed up

kirsty thats also why i ask for future reference u never know what u will need
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Date: 28.08.2009
From: Phil J

Subject: Re: Hi all new here and fed up

Hi all and thankyou so much for your words of encouragement, it really has done a world of good being able to get it out instead of bottling things up. Some have asked about anti TNF treatment well a few months back I was put up for it but didnt score highly enough to receive it (seems its just the health authorities way to save money and not give it) if not being able to walk some days and pick things up isn't a high enough score I would have to ask just how bad does one have to get :( but hey am smiling today and feeling more positive so many many thanks.....
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Date: 28.08.2009
From: val h :-)

Subject: Re: Hi all new here and fed up

great to hear it it a bit damp here which not helping but will have to get my shoes out and socks lol. keep in touch
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Date: 28.08.2009
From: Phil J

Subject: Re: Hi all new here and fed up

Damp here too val, if I was able I would be in the shed building an ark and changing my name by deed poll to Noah lol oh the british summer......
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Date: 28.08.2009
From: Lynne

Subject: Re: Hi all new here and fed up

Sorry to hear that phill, feel for you. I know what you mean about having to jump through hoops to get it. Four years ago to get mine my rheumy nurse said I had to stop all my meds for two months before I was assesed so that I would be really ill, swollen and imobile and in terrible pain. Could hardly put one foot in front of the other. Not lift anything , could hardly dress myself. Was almost living in my pjs. Lost weight cos couldn't cook properly.. Couldn't stand long enough to cook . Was a bliiidy painful time. But worth it I got the TNF's first go. My rheumy nurse kept seeing me every two weeks before the assesment she did keep explaining that she was sorry I had to go through this but it was the only way to get them. Cos they are so expensive. They won't prescribe them until absolutly necessary when your really really ill .I was assesed I think about three times during the two months. After each assesment my rheumy nurse would give me a steroid injection to relieve the pain a little untill next visit. But she said it has to have worn off before next assesment so I was I'll again. It was horrible but worth it. It's the best med I've ever been on. Had RA for twenty years now.

So I guess what I'm saying is please don't loose heart keep chipping away and keep asking for them. Don't take this decision for them not to give them you as final. Ask every time firmly but politly. If your really ill one day ask your rheumys secretary for emerg appointment. Politly.. It all helps for your records plus hell see you when your bad.

Hope this helps. Sorry again you did not get them . Wish you well xx
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Date: 28.08.2009
From: Angela

Subject: Re: Hi all new here and fed up

Hi Kirsty, Yes I have noticed that if I have to much sugar it affects me. Pasta definately affects me,even some meat does.
If I walk about in small bouts then sit I am fine , if I dont even though I feel I can I suffer that evening or the next day.
If I get stressed about anything even the littlest thing or have a petty arguement with my hubby or something like that I start to flare.
I would have never thought these things would affect my condition, butI have learned all this by keeping a diary,so at least I can stop and think before I kick off if you know what I mean lol.
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Date: 29.08.2009
From: val h :-)

Subject: Re: Hi all new here and fed up

as far as i can tell no rhyme or reason to mine either will keep diary sounds good idea might give others an idea what going on tried everything i can find to try :-(
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Date: 29.08.2009
From: Lynne

Subject: Re: Hi all new here and fed up

Hi phil ... Oh sorry Noah.. How's the ark coming... Still wet where you are. ??
Weather not bad here in fact quite sunny really. Hate te
the wet weather . .. Brings my arthritis out.. Argh.
Hope your well x
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Date: 29.08.2009
From: jeanette12

Subject: Re: Hi all new here and fed up

hi phil its ok to feel fed up its no crime we cant be happy every day we pretend some times to people just to make them feel better have you any hobbies i no you are limited to what you can do but try something even chattin on hear takes your mind of thing i was feed up and found this sight it really does help to talk to people that no whats goin on with our illness hope you fell better soon bye for now
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Date: 29.08.2009
From: Lynne

Subject: Re: Hi all new here and fed up

Hi jeanettee how are you today??
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Date: 29.08.2009
From: jeanette

Subject: Re: Hi all new here and fed up

ok ta went to a party last night dancsd all night best iv felt 4 along time bit naughty mind didnt take mth injection cos i wanted to have a drink and feel fine this morning thank hope you are ok
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Date: 29.08.2009
From: Lynne

Subject: Re: Hi all new here and fed up

It's brill when you have a good day, they come round so infrequently. Pleased you enjoyed the party and no side effects too lolololoolol xxxx

me ok a little back ache do taking it easy xx
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Date: 29.08.2009
From: jill

Subject: Re: Hi all new here and fed up

Hi Phil.... i still got my Anti tnfs, even tho my joints wernt visibly swollen everywhere, my nurse had seen me in the past in a bad way, but the day I got assesed altho unwell and in severe pain, everytime she touched my joints i made sure I winced!...next time they touch your joint, even if not visibly swollen say "ARGHHHHHHH!"....also im sure U can go bk and be re assessed...Lynne might know that ansa, cos she knows everyfing! lol....take care, stay in touch cos we need more felllas in here too
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Date: 03.09.2009
From: Lynne

Subject: Re: Hi all new here and fed up

Hi phil I'm not sure how you ask to be reassessed as like jill got them first time. Only thing I can suggest is asking for emerg appointment with your rheumy when your really not well. And like jill says scream out loud when they touch your joints. Then ask again for the TNFs
no harm in trying. Hope this helps. Hope you get the meds you need xxx
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Date: 09.09.2009
From: Phil J

Subject: Re: Hi all new here and fed up

Hi all been busy recently and feeling a bit more positive over last week or so, having read everyones positive and kind replys I must say a big thanks to you all. Hey the suns out today and have just put my washing out, so good to feel the sun on ones head. Still in pain but hey things could be a whole lot worse I have food in the fridge and a smile on my face, how good it feels to feel positive.....I hope your all having great days....Phil x
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Date: 09.09.2009
From: jill

Subject: Re: Hi all new here and fed up

Brilliant Phil... thanks for posting, does help us all and others, as we often wonder wots happening, some ppl come in and never come bk again, which is so sad....ive learnt soooooo much about myself, just reading others posts etc....Phil do u think U will try and reapply for anotehr assessment...and do wot we suggested, everytime they touch a joint and they push on it, say" thats sore" at end of day, they cant see into that joint, we dont Have to have a swollen joint, mine hurt bad when prodded.... I was so close to NOT getting my meds, scrappped the assesment by skin of my teeth.... its all government rubbish that stops ppl having it ue to cost, they dont care much...u deserve it...u need it..... I learnt the fast way, my nurse gaave me some hints, dont get me wrong Phil, if I didnt need this med, she wld not have given it to me..... I think the points system to allow us the meds is absolutely Poor!! please dont give up..... when the nurse touches a joint, say Ouch! she has to mark it up as a point....goood luck, come bk soon x
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Date: 09.09.2009
From: Phil J

Subject: Re: Hi all new here and fed up

Thanks jill I will certainly be showing them how much my joints are hurting on my next appointment as they genuinely do. Appointment came through today for 18th sept so will be pushing for it again, good to have support on here......
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Date: 10.09.2009
From: val h :-)

Subject: Re: Hi all new here and fed up

hi phill not to long to wait for that app. good luck with it and love the positive attitude the sun at the moment so good makes u feel more positive and puts a smile on my face
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Date: 12.09.2009
From: linda wills

Subject: Re: Hi all new here and fed up

HI PHIL HOW ARE FELLING TODAY. I HAVE RA AND THE PAIN IS A S EVEN TAKEN PAIN KILLERS DONT ALWAYS WORK. WE ALL FEEL DOWN I HAD A BRAIN TUMOR AND THINGS WERE BAD BUT MY CHILDREN WERE GREAT, I HAVE 3 GROWN 2 LIVE AWAY AND ONE OF MY SONS LIVE NEAR I USE A WALKING FRAME I FIND IT EMBASSING BUT HA IM OK. WELL YOU TAKECARE SPEAK SOON BYE FOR NOWX
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Date: 12.09.2009
From: Bernie

Subject: Re: Hi all new here and fed up

Hi Linda, I just started using a walking stick for support and like youself I feel embarassed too, I suppose we will get used to it ;-).
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