Newbie😢😢😢: Hi everyone i have been reading all the... - NRAS

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Newbie😢😢😢

Shazza11111 profile image
•23 Replies

Hi everyone i have been reading all the post on here and everyone seems really nice, so need some help, long story but here it is, went to doc in june about numerous syptoms was told it was my anixty my blood p was always slightly high with wbc also, anyway after many visits bk n fro i finally got admitted to hosp where i blew up like a balloon and could barely move the diagnosis is R.A well had steroid inj while there and now on naproxen with cocodamol, but i am so depressed with this crying moaning at kids stressed very sore fatigued very bad insomnia and was at gp today she was really contacted my rheumy to c if they could c me sooner, to get this under control, i have 2 kids youngest is 2 im 29 worked since 16 and now everything is upside down for cant do my job at the min and feel so guilty i cant do alot with kids as im soo tired and sore but cnt slp can barely lift my baby up feel so useless at times as a mum, my gp is sending me to mental h also as i am reallt struggling with it all cn someone plz tell me this will get better when treatment starts i dont wont my kids growing and not having memorys of fun things with me 😢😢😢😢

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23 Replies
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cathie profile image
cathie

Once they have a proper diagnosis I'm sure you'll get this under control. It's a horrible disease and can make you very tired. But there are good treatments out there so there is hope -a lot. Look at Nras website as there's helpful advice on that. Cathie

Shazza11111 profile image
Shazza11111• in reply tocathie

Thank u for reply, that was there diagnosis from a rheumy while i was in hospital first time i seen after getting home she informed me of the treatments they use and the side effects scared the crap out of me this has to b started on my next app, had xrays of my hip knee ankle and hands but not heard anything back really in a lot of duscomfort just dont know if i can get use to feeling like this xx

girlmode profile image
girlmode

oh my gosh you just described me 2 years ago.

now all these emotions you are feeling right now are a normal reaction to the way your life has changed. bless you there is hope, everyone is different in the way medication work some find the right course of treatment sooner than others.

don't despair there are a lot of treatments and a lot of great rheumy teams.

ask lots of questions at your gp and at your rheumy clinic.

and of course there is a lot of support here.

sending you hugs of comfort.

Shazza11111 profile image
Shazza11111• in reply togirlmode

Thank u my gp has been great she gave me this website, which is brill as i cnt talk to no one because they dont understand they just think its growing pains, i just want my old life bk need to work to pay bills( well overdue) and i cant because im so weak and fatigued all the time, i want to go out with my kids n have fun again cnt at the min just so fed up then i snap at them because of how i feel, i never expected my result to b this and how bad it is now from when i started getting the syptoms in june, maybe before that but never paid attention as didnt really bother me then just thought i was over doing it xx

cathie profile image
cathie

They tell you about the worst that can happen, but in my experience of nearly 20 years, on the whole medics do take care of you. I had one bad experience but my present rheumy is reliable and thoughtful.

Shazza11111 profile image
Shazza11111• in reply tocathie

I hope they make the diffrence i badly need missing out alit with my kids i suppose its gd to know the abswer to it now and its not just in my head i just need to try and find out what the best treatment is i bought loads of vits to c if they help as i really dont like the sound of the meds but will have ro take them xx

cathie profile image
cathie

I hope you can get proper help soon. Eating well, gentle exercise and rest will be good for you. A lot of us do pacing of ourselves when unwell. That is doing something in short bursts with rests in between.

It would also be good if you have people to support you, just things you need, and understanding,

Shazza11111 profile image
Shazza11111• in reply tocathie

Im not eating well at all just no appetite, and thank u cathie means alot for ur time to reply, im going to try swimming as my gp says thats one of the best but im scared incase my feet and lega go numb like they have been doing, just need to try and reach out with others that know of r.a xx

allanah profile image
allanah

Hi and welcome here. I'm not surprised your feeling so low. Pain and looking after kids and coping with everyday tasks is hard. Fatigue is one of the worst parts of illness I think. I hope the doctors get you on treatments soon as they will help you long term. Depression and anxiety can be part of the illness as I felt very alone when I first got the disease and I think your doctor is right to tell you about here as many of us have felt how you do. There is light at the end of the tunnel xx

Shazza11111 profile image
Shazza11111• in reply toallanah

Thank u i just need a bit of improvment but its not really and im glad i came on to spk to others like me felt so alone theses past weeks xx

allanah profile image
allanah• in reply toShazza11111

We've been there !,

flow4 profile image
flow4

Ahh Shazza, you've had an awful time! I'm newly diagnosed too, so I understand how awful you've been feeling. I'm a single parent and working too, but my kids are much older - it must be really tough with little ones! I started treatment 3 weeks ago and feel a lot better already - I don't know if the improvements will last, but I feel hopeful for the first time in ages. Hopefully, the doctors can sort you out too!

Shazza11111 profile image
Shazza11111• in reply toflow4

Hi flow thats gd ur feeling so much better did u wait long to start on meds for it? Pretty sceptical about them but willing to try anything at the minute. How is ur pain is it eased abit? Xx

flow4 profile image
flow4• in reply toShazza11111

Hi Shazza, everyone is different, but for me, the meds have so far been great. I was undiagnosed and mostly untreated (apart from NSAIDs) for about 4 years, getting worse and worse. Now, 3 weeks after a steroid injection and the start of DMARDS, I feel so much better it's unbelievable - my pain has eased massively, not just a bit. :)

When did you have your steroid injection? Has it given you any relief?

Shazza11111 profile image
Shazza11111

I had my kenalog injection on the 6th of november its helped massively little aches and pains was able to walk without a limp but its just all creeping back up and seems more intense shotting pain knee and hip pain, i need to try and get bk to work as thats my only income so my bills r being affected also but right now i just cant i think i would break down if i went bk to work im just hoping theses meds im being started on work quickly xx

flow4 profile image
flow4• in reply toShazza11111

It's really tough, isn't it. I started my meds on the same day I had my steroid injection, so the theory is that the steroids will see me through until the other meds start working... So far so good. :)

Are you in the UK Shazza? If so, do you know about Tax Credits...?

stbernhard profile image
stbernhard

Hello poor thing. It can all be so overwhelming when RA hits you. But please believe that today's treatment and medications will help you to get back to a nearly normal live. Your children will have their mum back! Try not to pay too much attention to all the possible side effects of RA drugs. None of them are half as bad as RA itself. But most importantly! Don't feel guilty, having RA is NOT you fault. Hopefully you'll be put on meds soon. All the very best and big hugs.

Pmr650 profile image
Pmr650

My heart goes out to you, I'm in the same position, at the moment I'm am on no DMARDS and am hypersensitive to drugs and only have Paracetamols to calm my pain. Everyone on here has been Amazingly Supportive, it is a great comfort to know your not alone. I really hope you get your treatment plan sorted out. X

Shazza11111 profile image
Shazza11111

Thanks so much for ur comments it really helps to know im not alone, and im also looking forward to being that mum again that my kids had fun with not moaning and snapping at them:( i think by the sounds of the ppl on here it maybe a long process for the meds and figuring out if they work or not, i think i may take the injection as the effects seem better im on anti depressants and im just hoping this dont counteract with each other and leaving me in a more vunreble atate, but again thanks for all ur kind comments and i hope you all well xx

Sheila_G profile image
Sheila_G

Hi Shazza. You poor thing. Please don't despair. I know things are terrible for you right now. I am sure we all felt similar to some degree when we were first diagnosed. It is very difficult when you have young children. I hope you have a husband, partner or family member who can help you out while you are waiting to see rheumatologist. I can only speak for myself but medication has worked wonders for me. I have gone from not being able to take a step without being in excruciating pain and now I am looking after my granddaughter 2 days a week and on all fours playing games more often than not. Please hang in there and know that your rheumatology team is there to make sure that you have the best medication for you. Their sole aim is to make you comfortable and if possible get you into remission. I hope you get to see them soon. All the best x

Gillian1163 profile image
Gillian1163

The drugs can sound scary but they can give you your life back. Go for it

Shazza11111 profile image
Shazza11111

Thank u guys and yes flow i get tax credits but dosnt go far once shopping and things paid for, geet esa every 2 weeks now and i really dont know how unemployed cn live on that mayb its just me use to my own income, gp called today and i have to get another steroid injection only had one on the 6th cn u have as many as u need? My rheumy is going to c me sooner thank godd but had a no bad day today it really does help get things off ur chest so glad my gp gave me the website xx

Hello Newbie, you will feel better. I understand the fatigue, soreness and stiffness all too well. I'm finally feeling better on therapy and you will too!

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