Help

[Jayn1e]

I'm new on here .so sorry to start on a negative . I'm desperate . I can't bear the pain anymore . I have reached the end and want to die. I have children a husband and a grandchild and whom I love with all my heart, but I am of no use to them anymore . I cry continuously despite antidepressants . is there Any hope out there. on Meds and going for iv steroids next week. so sorry guys. would rather give birth weekly than go through this. thank you for this site. Lots of love xxx

[Mhairi54]

Hi and welcome. Is this your first major flare? I remember feeling like that when this first happened to me, the pain was so bad that I wasn't sure how long I could take it for. But as time has passed and they've got me on better medication and the flare has passed, I'm now in a much better place. Don't lose hope. You'll get through this. This is a great site for support. Take care.

[sylvi]

I do understand what your saying last weekend was one of the worst i had had since i was diagnosed with RA and one day last week was rough as well,but i never felt like commiting suicide though there have been times in the past when i have said that i wish i was dead,but my family was very upset by my words and i had to explain tothem that was the only way i could explain to them how bad it was for me at that time. So now i use different words when i say i am having a really bad day. Speak to your drs and consultants and get them to do something to help you. You don't say how long you have been diagnosed or what meds your on. I suggest you ring the NRAS helpline and get someone to talk and support you,they are very good at what they do and they are better placed to give you advice.

I hope by getting it out on here you will realise your not alone in your suffering and there are many of us who will support you and feel free to rant as much as you like and if something is good happening for you share it as well darling.xxxxx

[helixhelix]

You do sound atyour wit's end.... I've always found steroids very effective so hopefully that will give you a break for a bit.

Are you newly diagnosed, or do you have the evil RA that doesn't respond well to many of the drugs? Either way it's tough. I well remember lying in bed, hardly able to move, and in too much pain to sleep and feeling that my life was worth very little. But that was then, and this is now. And I've found the mix of drugs that works for me so am now in a good place. So do keep pushing your doctors to find something that works for you. Good luck.

[allanah]

We have all been there but please talk to the nras helpline who really do " get it"

Also once you get your steroids you'll pick up really quickly . I've said I've had enough etc but then you get a period of calmness every so often . Hang on in there and get back to the doc who gave you the antidepressants , they can take a few weeks to kick in but if it's longer than that then they may swap you to another one .

Which RA drugs are you on . Are you flaring or do they need revising of indeed have you started them yet.

Ps don't apologise ! Lots of us have felt like you do at times xxx

[Moomin8]

Hang on in there- x

[Jayn1e]

Thank you all for such kind words. I've been diagnosed for five years now. currently on sulfasalazine and about to go back on methotrexate after a previous bad reaction for another try. I have some reprieve each afternoon for a few hours which keeps me going. I can't self turn at night, I am unable to toilet or dress alone I can't drive any more due to pain and lots of grip in hands. I also have fibromyalgia as a result of the ra. I hardly eat or I eat junk so can't shift the excess weight from 3 years on steroids. thank you all for listening. I good to hear from others who get it! x

[farm123]

I think you need to be totally honest with your rheumy as you are not under control. If you previously had a bad reaction with MTX I cannot see how re-introducing now is good when there are other meds that could be tried (unless you already have or have other issues). Unfortunately it can take time (much too long) to find the right combination of drugs to help. NRAS or arthritis research have good website for information and the NRAS have a helpline if you want to talk to someone. Farm

[Jayn1e in reply to farm123]

Thank you. the reaction I had was a rare one of paranoia. we thought perhaps if we combined methotrexate with something for paranoia we could get it working ! thank you for reply. I will speak to nras I think

[JacquiThomas999]

I am sorry that you are having such a horridious time. I notice that you are having trouble turning. I had the same problem and bought myself a Snoozle. It is a slide sheet for the bed, it may help you, have a look on their website.

I also have times of being extremely down. My mother supports me by telling me to call, anytime and anywhere. I haven't, but it is nice to know that she is there. Hubby is also supportive.

Hang in there and call NRAS.

Jacqui

[Jayn1e in reply to JacquiThomas999]

Thank you hun, I'll look at snooze it sounds great. had it helped you turning over at night?

[JacquiThomas999 in reply to Jayn1e]

I don't sit up to turn over now.

[Paula-C]

Hello. I'm now nearly in my fourth year of remission due to the wonders of Enbrel. When I've looked back and remembered just how bad i was before I started taking Enbrel I use to question....was I really that bad?

Anyway I'm a member of Nras and I use to post alot on the members forum then. A week or so ago I logged on and went onto their archive forum to read what I put on there at the time and yes, I was bad. It upset me to read what I put at the time, my thoughts and feelings and the fear of starting Enbrel (which I now call my Magic Potion). I've only taken the odd pain relief here and there since, been over a year now since I last took one.

Was only thinking a few days ago about my first Christmas when taking Enbrel, only had four injections and my daughter told me she'd couldn't remember seeing me so active, kept telling me to sit down. Before I started Enbrel I could only manage to walk a few steps and then couldn't manage any further without holding onto furniture. I was in remission at my 12 week follow up appointment.

So hang on in there,it can and it will get better. I'm proof of that!!!! xxx

[Jayn1e in reply to Paula-C]

Wow that's a really encouraging answer, I've been given some leaflets on enbrel in case the methotrexate doesn't work. I'll definitely read through them now. thank you

[farm123 in reply to Jayn1e]

I wonder whether that is why they want you to try MTX again as they do say that the biologics work best in conjunction with MTX but it is not absolutely necessary. I cannot tolerate MTX and had 7 years on Enbrel alone before either my body got used to it or my RD stepped up a gear. Biologics definitely made a difference for me but like the DMARD's there is no easy way to work out which is the best for you. Farm

[Paula-C in reply to farm123]

They like you to take Mtx along with Enbrel because Mtx helps to stop your body from making antibodies against Enbrel. My consultant told me that if Enbrel works its the best one to be on. Forgot to mention I've had no side effects from Enbrel at all.

[nomoreheels]

Oh you are in a poorly way my love aren't you. Well I hope the replies you've received from our lovely girls, who have years of experience this disease between them (I can add another 8!) have helped some. I'm one of the more well controlled & settled on MTX & LEF (though LEF is a pretty recent addition but if any med can be given one MTX deserves a long service medal) plus the usual add-ons so I know it can be done! You'll get there too because it sounds as though your Rheumy's planning to bring in the big guns so is very aware of how bad things have become for you.

Keep talking to us here & you'll receive all the support you could wish for & whilst I know that won't take your pain away it will make you feel less alone in your pain. Do ring the NRAS helpline if you feel talking to someone will help, it's free from landlines 0800 298 7650 & they're there Mon - Fri, 9.30am til 4.30pm. You won't tell them anything they won't have heard many times before so do ring.

Take care keep in touch & have a big gentle hug. ((()))

[Jayn1e]

Thank you so much lovely, talking on here today has saved my sanity. I'm so grateful to you all. God bless you all xxx

[Leonwp]

Welcome to the forum. Bless you. It must be so hard to see the impact of this disease on those around you. I have frequently had people say to me it is awful that i have to cope with this on your own, i actually see the opposite, i would hate to have responsibilities for how my disease affects others, on the days i just want to rest i only have my needs to consider and that for me is a blessing. To others it may seem strange or even their idea of hell but we all have different needs and strengths, i am hopeless at asking for help and the reflective pain of others i find completely unbearable, i often think the mental effects of this disease can be worse than the physical. I am sure others in a similar position to yourself here will help you with the support you need.

[Jayn1e]

Yes the mental effects are considerable it is like grieving for your lost self

[linda-5502]

You poor darling yes once diagnosed medicines will help sending you big hugs and welcome to this site lots of useful info here take care and fight as best you can xxc

[gillianf]

I am so sorry to hear you are feeling so bad. Do you have a rheumy nurse or team you can speak to? Sometimes it just helps to share. I do know exactly what you mean. I was diagnosed over a year ago and have had RA for about 2 1/2 years. Now on MTX and Benepali jabs and painkillers of course. Have you discussed pain killers with your GP. If you need them you must use them except when driving maybe. Possibly pain management classes if they do them in your area.

The best thing I find is to continually focus on something other than the pain. I don't mean to keep going physically all the time but to focus on maybe music, relaxation excercises or maybe even games on a tablet. Strangely I find this particularly useful as it occupies both my mind and my hands (gently) while I am resting. Try to focus on the good things in your life. It helps less at night and I am often to be found in the lounge at odd times of night watching TV or playing on my tablet until I feel sleepy enough to sleep again. Anything but focus on the pain.

I am still waiting to find a medication that helps as I guess you are. But I am told that its just a question of finding the right one. Try to keep that in mind. you are not alone so use any help available to you to manage through this bad time.

Good luck and enjoy as much of Christmas as you can. Believe me you are certainly of use to your family now and will always be. They love you. xx

[Jayn1e in reply to gillianf]

Thank you hun, yes I find the phone games are great distraction when my hands can use them. I am due to stay new meds and I've heard it should make a big difference. I don't feel quite like I don't want to live today like yesterday, and spending much time sleeping on and off which I think is helping as I hadn't slept properly for months. God bless hun xx

[Alison-NRAS]

Hi there, if you would like to discuss any of your issues further our helpline is open 9.30 to 4.30 monday to friday 0800 298 7650.

[Hidden]

Hi there Jaynie, I too am new to this and was trying to think how to start as you all sound so lovely and caring. However, I am in the same situation as you, I hurt so much and nothing seems to work. Everything you say is exactly how I feel. I've tried all sorts of dmards and biological since being diagnosed with RA 8 years ago. I'm stuck on a high dose of steroids which don't help much now, I think I am a lost cause as everything either doesn't work or gives me bad side effects and reactions. Now I have been put on Mycophenolate which hasn't helped yet and have to try again with methotrexate injections as tablets upset me in the past. I have to get my steroids down but hurt too much. Loads of different painkillers don't seem to help. My rheumatologist is trying but they seem to think I have tried everything and don't know what to do next other than try azathioprine or abatacept if mycophenolate and methotrexate don't work. But like you I want something to take the pain away now, it takes so long waiting to find the right drug. Now to top it all I have severe Carpul tunnel in my right hand, waiting for surgery, and with the numbness and hurting I feel helpless, both hands killing. Anyway, I've had my moan and realise there are lots of you hurting too. Hope to hear from you, and Jaynie, I feel for you, hope you get help soon. Lots of love xxx Gloria-S.

[Jayn1e in reply to Hidden]

Hi hun, I sincerely hoe you find the right combination of meds, you must feel so discouraged having you'd so much already. God bless hun. free good to her how you get on love Jayne xxx

[Hidden in reply to Jayn1e]

Thanks Jayne. I really hope you get the right meds too, it really is horrible being in so much pain. I've got to start my new methotrexate injections on Friday so hope they work. Also got a date for my hand op, 19th December, thank goodness. I'm a bit scared but hope it goes okay. Thanks for keeping in touch. Look forward to hearing how you get on too. Gloria xxx

[Bluebird335]

Hi, I was just like you 10 years ago, it's not that you want to die but the life you are living is not bearable.

In my case, I had RAfor a couple of years and had kind of managed then it suddenly became a lot worse and l just couldn't continue with my job or anything.

Keep a diary for a while, then write to your specialist listing exactly how you feel. If they have given you the leaflet for Enbrel then they are probably considering this as your next step. The NICE guidelines state that you need to have tried sulfasalazine and methotrexate for 3 months before going on to the biologic e.g. Enbrel

Your specialist is there to help you, they want to catch the disease early to get you under control and they recognise that they will need to see you more often at the beginning to get the Meds right. Dont be afraid to contact them, they should have a helpline contact number.

As for me, I was put onto Enbrel, now Benepali (both the same) and it was like a miracle, can do most things now and no side effects. You specialist will work with you to find the best medication.

I wish I had taken some video of the before and after, the difference is so remarkable, can I suggest that you do that? NRAS might like to use the video as a training aid later if you decide to release it to them.

With very best wishes, don't give up, help is only a short time away

[jenna]

Hi Jayn1e

Please don't lose faith, four years ago I was in the

position you are in, and my heart goes out to you, but there is help out there, all be it can , take a while to find the right one. Please please, speak to, your nurse, doctors, consultants, You should not get so low, You are of use to your family, even if in small ways, just being there is enough for them, don't forget they are suffering watching your suffering,

Be strong ,,,,,,, you will get help,

Xxxxxxx