Before I begin, I just want to make it clear that I am so grateful for all the help, encouragement and care that I have been privileged to receive from the NHS, it has been first class.
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I was was 'talking' with Lavander Lady on this site earlies and I started to think of just what sort of prognosis I can expect. I read about others on this site who have been suffering from this disease for many, many years. That started me thinking about what I can look forward to with regards to lifestyle, mobility, pain relief etc etc.
I was diagnosed 3 years ago and have been in pain almost constantly. There were occasions when trying different ideologically that I had pain relief for very short periods of time. I had side effects to everyone of these drugs. I am now on my fifth drug, Tocilizamub, i have been on it since december and it isn't working very well to date.
All of you long timers, let me know what I have to look forward to. Is this the way my life is going to be u til I'AM put into the ground? Is there any point in hoping that someday I will be able to go hill walking again, spend a day in the town shopping with my granddaughter, walk up a flight of stairs, be able to jive to 'rock around the clock', to be pain free, to be able to kneel down to defrost my freezer or polish the hearth?
I am not saying all this because I'm feeling sorry for myself, which I admit at times I do, but I want to know what the prognosis is for me? Your not doctors I know but between all of you there is probably more experience of this disease! What do I have to look forward to.
I took RA out of the menopause at 60. I have no other medicinal complaints and have always been healthy as a horse. I seems to be sick constantly this past three years.....will I ever feel healthy again? Or, can I mearly look forward to "not too bad today" or "not too good today"! I just want to know so that I can adjust and come to terms instead of living in hope of a pain free life where I can live again the way I used to.
I want to know so I can adjust my expectations.
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jeanabelle
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If they get your drugs right you will have a reasonanly good life,just not like it was before. THings change they always do and it comes with age.If you didn't get RA until you hit 60 count yourself lucky,there are some on here that are a lot lot younger when they had RA diagnosed. Yes your life will change,some things you will be able to do with ease others not so easy. Its all about pacing yourself. I still find pacing difficult and there are days when i just go at it like a bat out of hell. I pay for it everytime i over do it.
You will be fine when you get your meds sorted out. Hugs to you.xxx
Hi Jeanabelle. Everyone's RA seems to progress at different rates and with different reactions to the various drugs.
It's 5 years since I was diagnosed. I am on MTX and Enbrel although in the early stages had to jump through hoops on totally useless drugs just to see if they worked before the NHS spent a lot of money on the anti tnf.
I am so sorry you are in such pain which nothing seems to relieve. Have they got you on MTX as well? The combination of that and an anti tnf does work and is recommended to have the two together.
I also find that Nurofen and paracetemol help with pain and your consultant should also be considering whether regular steroids would help. My consultant told me to take 400 mgs of Nurofen (I use the gel capsules - easier on the stomach) and 1000mgs of paracetemol if the pain was bad, It does work.
I am relatively free of pain most of the time but do get flare ups and have days when everything aches and hurts, my hands are useless as are my feet and all I can do is rest until it passes off. My hubby and I manage a slow shuffle at a dance - I have tried to "bop" and usually manage a few minutes before I have to sit down. If I kneel down I can't get up without hauling myself up on the nearest chair and boy, do my knees hurt.
Terrified of falling over in the street (some days I am unsteady) and people stepping over me thinking I am drunk. Chance would be a fine thing. I have visions of my old friends in the police picking me up and throwing me in the drunk tank!!
Why shouldn't you feel sorry for yourself from time to time - we all do. But it will get better as time goes on. You may never be able to do all the things you could before RA but there are other compensations. Lots of time to read, do a bit of the garden (use a kneeler), watch TV, go to a garden centre or visit a stately home (I found them very helpful and made a lift available as well). Go on holiday to somewhere nice (airlines are very good at booking a wheelchair for you and you get to wizz through customs and security!.) Do an OU course for interest.
But please speak to your GP and your Rheumy Team about treatment and if not on MTX., ask why not. Tell them how you are keeping, (keep a diary if necessary) and get a friend to go with you who can listen and take notes.
Get plenty of rest when you are feeling bad - we're getting some warmer weather so that should help as well. Most of us react to cold and damp.
Thanks Sylvi, I see all these young people in the ward where I get my infusions and my heart goes out to them. Yes I do appreciate that I am lucky to have only had to deal with this for the past 3 years and I don't have the disfigurements I see in other sufferers it is because I was so very healthy that I took it badly. Most days I be grand but this past few weeks I have been a bit weepy when I think about all the things I more than likely won't be able to do again. It's that thing about passing into another stage of life I suppose, anyhow I talked with my rheumy nurse today when I was having my infusion and she has sorted an appointment for me for next Tuesday to speak to someone. They are so good to us aren't they?
Thanks again for the reply. It helps to have all the information in front of you so I know exactly what I'm derailing with. All the best. X
I think many of us feel like this from time to time. I was diagnosed about 20 years ago. I imagined I would be in a wheelchair within a few weeks. Well I am still able to walk (carefully and slowly as I have fallen a couple of times.)
I have learned a lot from this disease, to pace myself, to make the most of good days, to recognise a bad day and rest/read/stay in bed.
I used to wear myself out worrying about what the future holds. Nowadays I have learned to live one day at a time, and to be kind to myself if I feel useless sometimes.
One of the good things about RA is that today I was able to sit out in the warm sunshine and read, whereas my old work colleagues were stuck indoors missing this hint that summer is nearly here!
Thanks phoebe, I suppose I' m just a beginner at this. For the first 2 years I was really bad almost all the time. It is only since I have been on the biologicals that I have had any positive times and I want to know what to expect in the in the future.
I know too that everyone is different and reactions are all over the place, I simply have to find a place that fits me and stick with it. Thanks very much for your reply, every wee bit of experience helps me to see the bigger picture. X
I ask myself the same questions. I was in my early 50s when diagnosed & like you I agree that the later you get RA the better ....... but having said that I do think that contracting a chronic illness later in life brings its own difficulties. Like you I was very healthy before I got RA & my sense of self is strongly bound up with that former resilience. And when an illness like this comes along at the same time as the menopause or at a time when awareness of getting older is dawning then it's likely that confidence has already taken a bit of a bashing.
It is easy to start thinking that RA or any other chronic condition are the end of the line. But so many people carry quite a handicap - past traumas, secret sorrows, plain old anxiety - that RA is just another challenge in some lights. I want to dance too & kneel down to get things done quickly & easily but I think Lavendar Lady has the right idea - a slow shuffle or a quick bop - why should we do things the same way as everyone else?
It is great to hear that you are beginning to have some positive times thanks to biologicals - long may it last!
What a great reply, thanks, you put it into words I just couldn't find at the time.
I think I have to concentrate on what I can do rather than what I can't do.......easier said than done at it es I know. Like everyone I have had my own setbacks in life but as humans we learn to adapt. I just need to go easy on myself and except that I m 63 ( still young I know) and there are things I can't do anymore but there are still loads of things I can do. It's a matter of remaining positive too, isn't it? Thanks for the wise words.x
Can't add much to the great replies, except to say that those of you who have a difficult-to-control RA have my immense admiration for your strength & fortitude. I was also only diagnosed just over 3 years ago, and was in a complete state by then - immobile, hurting all over and barely able to shuffle from bed to toilet. But my RA has responded to the drugs, and the last six months or so I have been able to live a nearly normal life as long as I stick within my new RA limits. I have absolutely no idea how I would have coped mentally and physically if It hadn't, as I was so worn out from pain and the fatigue. So I really do hope that the next drug will be the one that works for you too. There do seem to be new drugs appearing very so often, so I guess what I'm saying is yes you have to live with what you have now, but don't give up hope as it could still improve. Pollyx
Thanks to everyone who has replied to my searching question.......Peggy Lee sings a song called "is that all there is?". It's quite a sad song about being disappointed with life. I can't say that...... I have had many dramas and a few traumas due to living in Ireland through the 60's, 70's and so on. I think what has me feeling so negative about it all was because my long term partner left me 8 months after my diagnosis (he said he couldn't cope with the change in lifestyle, poor Tony!)when the RA was at it worst. I really didn't think I would survive, but I did. My life isn't over, it's just different and I will adapt and move on. I find myself taking simple pleasure and some self admiration for the things I do manage to achieve.
I will be grand and I will carry on as best I can but not forgetting that there will be times when I will feel down, bitter and resentful. I'm human and I'm basically a nice woman who would rather do you a good turn than a bad one......so just soldier on Jean and get over yourself!
Sorry our responses crossed so I didn't get to see the part about your ex leaving. What a complete b*****d - you deserved better - with a partner like that who would need enemies? My man is fundamentally kind, a care worker and a very good father and without him I would be lost. He's not particularly keen to know much about RA and never let's me moan without getting exasperated and walking away! That's been quite good for me though as it forces me to look for positives - which I almost always succeed in doing. This site and NRAS have been the main positive for me! Xx
Excellent responses from all. I understand why you are asking this because RA has to be one of the most uncertain and unpredictable diseases and that seesaw of pain and symptoms seem to be matched by the seesaw of emotions we all go through. It is a very hard disease to live with because we never know from one day the next how we will feel and because it is actually a different disease for every one of us.
I often feel a fraud in terms of my RA but in this recent NRAS magazine there was someone's story - a man who had been very sporty and played football. I read his story expecting not toidentify with it much - a younger person, a man with a young child and very sporty. But reading his account of how his RA had arrived and orogressed I related strongly to it which surprised me. RA is a grest leveller st least.
I'm very lucky in that I don't have constant pain but I have had added autoimmune conditions and side effects since it started 2 years ago and I have experienced ill health in various forms all my life so I think for me RA is not so terrible but the wider implications of it have been very hard to come to terms with. I do hope you find something that works well for you and thanks for raising this very interesting question. Tilda x
Hi jean belle it's not that often now that my chin drops here anymore. But it has tonight.
I have had RA 2 years and gone from fit outdoor to fat indoor, lost my job, haven't been able to walk at times specially last few weeks, had a spinal op,developed awful nodules on my hands and feet, had shingles gained weight! My oh still here, still helping and I can't believe your partner was so selfish to leave you when you really needed him the most. Unbelievable and it certainly won't help you with expectations of getting better.
As the others say, you do go up and down but I really still haven't thought this is it forever. I still feel that as long as they keep trying me with different drugs and therapies I will respond. I expect to be maybe 70 per cent better and 30 percent tired or flared but that's just in my head, I do not think I will never get relief though of some form or another.
I feel I am fighting to get better and trying to keep positive cos at first like you I went on a downer, it was like I hit a brick wall and some days didn't want to wake up cos then I would have to get out of bed and continue the struggle. I did talk to the Nras helpline ...a lot! ..at this stage cos I didn't want to keep going onto my friends or family ..and they were great and understanding and put things into perspective for me.
Will I ever be the same again, well maybe not, but there's a few things I have gained, friends here, peace of mind not trying to work when ill, and now that my family and friends truly do understand this illness, enjoying volunteering, and arguing with my Rheumy! Telling student doctors about RA so the next generation might understand us better.
There is no doubt you are a lovely person and when u respond to the treatment , go round to poor tony!? And show him what he missed by not giving you time to recover!!
Thinking of u and sending hugs xxxxx
Gosh, well not sure what to say other than things can only get better!!, my chap is also called tony, though his mum calls him ant!!, not the same guy as yours mine lost his last partner to a brain tumour and helped nurse her at home til the end!!.
When he met me last July was fight and well( by RA standards!) due to my medication BUT MY by mid Jan it wasnt working any more and he has seen me v poorly, I GET WORRIED he will get fed up and leave me.. he has had two sick people in a row!!, IM STILL WAITING FOR new MEDS and or new diagnosis??!!
I know how you feel, I too keep waiting to "get better". Although being diagnosed in 2009 just over 4 years ago (I was 52) I still haven't quite let it sink in that I won't suddenly get better. I have been on mtx since being diagnosed (oral) and have just started injections at home. I just seem to be on a plateau of a few good days and then BANG! I am housebound with flare ups that last for days. I am just waiting for the drug combination that will at least keep it at bay for longer periods. I do hope that you too will eventually have that success with drugs. Take care x
I don't know what to say..... Your wise words and masses of encouragement have really moved me. You really have to walk in someone else's shoes to understand how deeply effected sufferers are with all the complexities of living with rheumatoid disease.
While I was having my infusion yesterday I had the best laugh with the woman sitting beside me about the best way to get some weight off that Tocilizamub seems to put on us. The she and I teased the only man having an infusion at the same time. Afterwards I thought how we were like a special club of people who really kept each other going, including the nurses who always take part in the craic ( that's Irish for fun or good time).
They and you on this site have given me such a lift and that 'belonging' feeling. Thank you all so much for helping me and I know for a fact that these responses have helped others who are reading them. Thanks so very much. X
Sorry to hear the sadness in these responses. I've been desperate at times, felt the loss. But I can still get in to wild places, there are ways of getting into the hills. I am studying art quite seriously and have found new friends and beautiful things to do. Have had RA since 1999 and am in late 60s. Not in a wheelchair, live in a ground floor flat, with thoughtful things like walk in shower. But I have a wonderful partner who has supported me unhesitatingly.
Hi everyone, I'm 29 years old, wife & mother of 2 young boys aged 3 & 5 and diagnosed with RA just 6 weeks ago, this site has been a god send to me and my husband, initially I thought my life was virtually over! I've been quite poorly the last few weeks with the side effects of MTX with severe blistering all over my body but my boys keep me positive, I don't have a death sentence just a difficult journey ahead, I am learning to TRY and pace myself and plod along the best my body will let me. We are stronger when it's the only option left pain free wishes to you all xXx
Thanks jilly, I have said on this site before and I will say it again, my heart goes out to young men and women with this disease who are still raising small children, working full time and all that goes along with that. You are amazing, you really are.
This blog seems to have taken on a life of its own. There are a lot of people who really are finding it difficult coping with this condition and there daily responsibilities.
I was in a bad place when I wrote the question. I have found myself in that same place increasingly over the past few weeks. I really did believer that I would get my life back to what it was before my diagnosis. So when it gradually began to realise that this just may not happen the way I had hoped. I have been on five different biologicals in the last year and its looking like I my be taken off the one I'm on now. I do know for a fact that my rheumy team are doing everything they possibly can to reduce my pain and increase my quality of life. I consider myself very very lucky to have them.
I could tell you all the reasons why I am feeling so far down but at the end of the day there are many people with this disease who are in far worse positions than me, like I said having to work full time, rearing small children etc etc. it puts your own life style problems into perspective.
I want to thank everyone who has responded. I also hope that the question has helped others who are feeling down and bewildered about where all this is leading them to.
I accept that my life more than likely will not be like it was 3 years ago, but, my life is not over either and it is up to me to fined a new way to live that takes into account my medical condition. No so easy maybe but it's is there if I want it.
Thanks again for all the love and support, you have been just wonderful. XXXXXXXXX
HI Jeanabelle, I am just catching up and saw your post.
I can totally relate to the dark place that we sometimes find ourselves in. The others have covered a lot and shown you their empathy for how you are/were feeling. I find its always good to know there are others who have been through your pain and survived. All I can say is I am glad things are looking up for you again.
Hi jeanabelle I've just read through most of these positive posts. I guess trying to come to terms with many changes in our life no matter young or old. We are all in this together. It's not easy. We haven't got a choice when it comes to our health. I'm 44 had this for a couple of years now. Have fantastic support from my family, especially my mam and dad who are 70 and help me everyday clean cook look out for my two teenage sons they try and make my hubby see light at the end of the day. They are a fit healthy couple. My dad always says it should be him suffering not me bless. I think I've learned to take each day at a time. Adapt to what you can do not what you cant do. Live in hope who knows maybe one day there might be a cure take care big hugs wish you well prairie x
People are basically very good aren't they? I was at ground level when I wrote this post. I just couldn't see that my life would have any great value again! Out of that came this gush of compassion, concern, empathy and love.
I am so grateful for all your responses and I hope this blog has helped other as much as it has helped me. Thank you all very much. X
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Health and Happiness to You All
All set for my op tomorrow
Hi all i\"m new to this
