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Date: 03.02.2011
From: Nicky

Subject: How people cope.

I have been on the forum before about 4 weeks ago and everyone is so helpful, i am still getting used to the mtx which it has been six weeks now,

I would really like to know what peoples days are like and how they cope on a day to day bases. some days i dont wont to get up and when i get home from work i am done, i have always been house proud and i am finding it so hard as i cant do as much,

My son can round on saturday and saw me in pain, he keeps saying, give up work and relax, but he dont under stand if i gave up work, i feel some days, i would give up, please let me know how you cope,

Nicky
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Date: 03.02.2011
From: Dalton

Subject: Re: How people cope.

Hi Nicky, Ive had RA for almost 2 years now since I had my baby girl. Its been really hard and im on a concotion of medication into methotrexate. I still work but believe me there has been days when I just dont want to get up at all but I think its important to still have the independence of working if you can and meeting people still. Ive heard of so many people go into major depression by giving ervything up and not going out. It took me a while but I managed to work out that its best to be positive and try and try and lead as normal life as you can - you simply cant let it beat you or destroy you - you only have one life and you cant come back and do it again. I dont mean to be patronising and I still have really bad says and the pain can be unbearable - I can hardly walk some days or brush my hair but I refuse to let it beat me - you just end up finding your own way of coping - its like you either decide to swim and hope you get to the other side or just give up and sunk to the bottom of a very big dark ocean and I chose to swim (with the help of lots of medication and painkillers of course!). Good luck - hang in there. It takes about 12 weeks for the methotrexate to work. I also take sulphasalazine along with various other medication. Sometimes feel a bit "off" and sickly on the day I take it but otherwise ok. Mind over Matter.x
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Date: 03.02.2011
From: cookie

Subject: Re: How people cope.

Hi nicy i agree with dalton.i have had sreonegative arthritis for 17 years and for the first 2-3. Had the anger,why me reaction what you have to remember is that these auto-immune disorders are life changing and you almost go through the grieving process. Its almost like you are grieving for your old life i found it so hard. But eventually you will start to feel better. Its early days on your medication try to stay positive. I work full time and have 2 small kids age 8 & 3 its hard going at times but work gives me a sense of purpose makes me feel "normal" to a degree its down to personal decisions what you do but for me that works best. Try to stay positive things will get better xx
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Date: 06.02.2011
From: Nicky

Subject: Re: How people cope.

Hi Ladies

Thanks for talking to me,

I am or feel like i am having a real shit time of it at the moment, and i dont tend to talk to anyone about it as i dont want them close to me see i am suffering, i keep smiling with them, but my boys are noticing that i am in pain, you are so right Dalton it is mind over matter too, but some day i feel so bad not that i have to tell you how bad it can feel some days,
on thursday is the day i take my tablets and i do feel sick, will tht always be like that, and is methotrexate a pain killer as well, as i dont seen to have pain killers for the pain or will that get better in time,

When i was diagnosed with RA i can out of the doctors and cried my eyes out, then went to meet my dad for a coffee, whilist waiting for my dad a friend of mine came round the corner and she was telling me her cancer had come back and it has gone to all her organs, she only has a couple of months to live,i thought to myself then, what am i feeling so sorry for myself as i will see my family and friend every day, pat is such a lovely and such a positive person it give me a kick up the bum,

Thanks again ladies you do really help.

Nicky xx
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Date: 06.02.2011
From: Lynn B

Subject: Re: How people cope.

Hi Nicky, I think you need to see your rheumy about some decent pain relief, Mtx is not a pain killer it just slows down the immune system,which slows down the disease. If mtx is making you feel ill you can ask for injections, it is so easy and you dont feel it at all. The tablets were making me feel so sick and i have felt much better with the injections.xx Take Care.
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Date: 07.02.2011
From: domesticgoodess@gmail.com

Subject: Re: How people cope.

Hello Nicky

Like Lynn's just said, MTX is not a pain killer and you need to ask your consultant, specialist nurse or your GP to prescribe you something. I was once told by the nurse in the blood monitoring clinic that there is only a handful of patients with RA that didn't need to take pain killers.

I was diagnosed nearly three years ago and I still need them. I did ask my specialist nurse a few weeks ago that if the disease was undercontrol, my blood results were normal than why did I need to take pain killers. Here reply was simply.....'Because you've got RA'.

Your muscles will ache, I've read somewhere that the ligaments/tendons (can't remember which one, the ones that hold your muscles in place) get a bit like a saggy elastic band. That means that your muscle have to work harder to keep in place and if you've got RA they can't absorb as much energy/stamina as before, so they just get tired and sore.......Then we ache.

If you take MTX orally they never can be certain just how much actually gets into your system while your body breaks it down, some can be lost, if it is injected the dose is straight into you and none is lost, also if it is injected it bypasses the stomach so you shouldn't feel sick.

Have you thought of asking for a steroid injection just to tide you over while the MTX works it's magic? I had one last year and it did help me.

RA is a very complex illness and your meds are constantly being reviewed/tweaked until they are just right for you. There is unfortunaley not one pll that suits all. That is why we are not put back into the care of our GP's once diagnosed, a specalist has to keep their eyes on us. It may take time before get yours just right. But you will get there, just hang on in.

Hope you are feeling better soon.

Paula
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Date: 07.02.2011
From: Paula

Subject: Re: How people cope.

Oh dear......put my email address up by mistake. Anyone know how I can remove it?
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Date: 07.02.2011
From: Lynn B

Subject: Re: How people cope.

Sorry paula, I did the same thing a while ago with my e-mail address and as far as Iknow you cant remove it.
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Date: 07.02.2011
From: Nicky

Subject: Re: How people cope.

Hi Lynn/Paula

I am due to go back to the hospital on the 17th February, I think i will ask about injections as i am finding it really hard on my stomach i am always feeling sick, i have find out more by talking to you both than i have any were,

Thank you

Nicky
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Date: 07.02.2011
From: kazzie

Subject: Re: How people cope.

hi i have ra and it got to the point that i couldnt even go the loo myself as couldnt get up couldnt walk couldnt use my hands arms ect .and am sorry but i tried mind over matter and when you cant move my mind was sayin move and nothing would ,i was in hospital a few times with it am on mxt injections and been on enbrel for 3 weeks and am noticin the diffrence but i have tried loads of meds am still on pain killers ,sleepers ect i need a new hip now so if its not one thing its aanother .but you must tell your rhumy what pain your in as steroid injec tions did work .sorry to go but dont suffer with the pain
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Date: 14.02.2011
From: Nicky

Subject: Re: How people cope.

Hi Kazzie

You not going on and sorry it has taken me so long to answer busy at work, i feel i should not go on when i hear what you are going through,

I am going to see my rhumey on Thursday so i will ask him and i was going to ask for the injection as i have not stop feeling sick and the pain in my tummy is so bad,

wish you well mate.

Nicky
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Date: 14.02.2011
From: kazzie

Subject: Re: How people cope.

hi nicky yeah try the injections as they did help at first and def i think eased the sickness .let us know how you get on am just bout to have my mxt inject now so speak soon xx
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