Hi is it normal to be in pain somewhere in your body everyday ??? Today i have cried all day, cant seem to stop, its taking me ages to post this as my wrist is very painful today, yesterday it was my shoulder the day before it was the other shoulder and my wrist, before that my knees, its never ending, i'm on 20ml MXT and 4 Sulfa and a month ago i was started on Hydroxy but nothing seems to be working, do i have to spend the rest of my life on painkillers?? NO !!!
Sorry for my moan, just cant stop crying, just feeling very depressed with everything life has to offer. Does anyone else get like this, as i am usually a happy go lucky person ????
Wendy x
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nellysgran
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Sorry, don't have a magic cure but I can empathise as I seem to have a game of tig going on with my joints too. Never a day with any relief and swallowing pain killers like sweeties. Don't know if you are the same but my rheumy is happy with my disease control and reckons the tendons and ligaments around my shoulders hands and elbows are all swollen causing pain. I am getting a scan and steroid injections to help with the pain but I still have four weeks to wait to see the specialist who does the scan. This has been over a year for me and it was only after seeing yet another consultant ( 4th one this year ) that she offered this treatment. Maybe worth asking if your disease appears under control for them to look at your tendons around your wrist. Oh and I got new thumb / hand splints that help too. Hope you feel better soon, I am in the same club and I know how exhausting constant pain is. I had my weepy day on Wednesday and have picked myself up again, hope you can too, sometimes just writing it down or speaking to someone helps. Maybe your rheumy nurse could help you too? take care xx
It's very early days for you. October seems a long way off, I would phone your rhuemy nurse in the meantime. It is only natural to get down so early into your diagnosis, I remember having good spells and then being devastated when I hit a bad spell again. I am 14 years down the line and still have bad days where I lose my strength but it does get easier and you get better about asking for help or just speaking to someone about it. When I had a bad day a while back, a few friends on here told me to be proactive and think what can I do to improve how I am. Long and short of it had a bad few months and was given conflicting advice. Made a list phoned rheumy nurse and things over the next few months improved. It's good to have something to focus on and you feel you have a chance of controlling it too which helps. Don't be too hard on yourself. Try and work with how your body feels today and maybe make a wee call to your nurse on Monday. xx
I'm 6 months ahead of you and have been on 20mg MTX, Hydroxy and 4x Sulpha. Had to stop sulpha, MTX now 15mg for last 2 months due to liver results, not under control as much anymore so having meds change in 6 weeks time. My emotions have been all over the place, way worse when I was on sulpha, spent a good 2 months crying every day, thought I was getting depressed etc so I stopped after 3 months (beginning April) and mentally feel better (physically not quite there yet). I know exactly where you're coming from as 12 months isn't long enough to accept that this is a lifelong thing and you still don't know what treatment will settle it down
I am optimistic that they'll sort me out, I know I'm way better than I was in the beginning and am sure you will get to that place in your own time. In the meantime cry as much as you want to, we're all here for you
Firstly, thank you for sharing how you are feeling, I hope you can take some comfort in that you are not alone in your experiences. It can be isolating and confusing, I was diagnosed roughly the same time and thankfully feel better than I did then. However, I do feel like I just want to think about something else, but feel too "off" so keep being reminded I have RA. I agree about the focus and I try distraction too, sorry u feel bad x
Oh and meant to say .. I can't get used to the variability. One day I can only shuffle along. 2 days later.. I felt the best I had in a long while.. Go figure? I thought maybe that was just me and that I'm sure I must look like a hypochondriac.....
Swapshop you have described how I have felt for the past 2 years exactly! Not any more though.X
Hello Wendy. Sorry you are feeling so rotten and unhappy just now. I do completely understand how you are feeling. When I was a year in and was still flaring a lot in my wrists I just felt exhausted. Pain is like this - it tires us out mentally and physically.
I am now 19 months post diagnosis and over two years since my GP first told me he thought I had RA. I'm in very little pain - mainly at night in my feet - plenty of other less terrible stuff still but probably not RA related - more OA and thyroid I think. I had a bit of an epiphany yesterday and really feel as though I'm in a much better place at last. This followed seeing my rheumy for first time in over a year and learning that none of my joints are swollen currently. It may or may not last but I suddenly feel that I have learned to assess and self monitor what of my pain means RA and which is OA and I know more about how to keep active on a daily basis while I can and hopefully that will help keep both of these diseases at bay. I think a year is not so long where the treatments are concerned and I advise you to try and seek help for the way you are feeling through your GP or your rheumy nurse becuase things shouldn't have to be this bad for you.
What I'm really trying to say is that this is an emotional rollercoaster for almost everyone of us as well as a physical one, but there will be time off it at some point soon I'm sure. It's taken me 19 months to get to the point of feeling like a well person again and a lot of that has been psychologically grappling with having this disease as much as because of pain.
Your pain needs addressing first and foremost though so please do try and get help very soon.
Hi Tilda thank you for your reply, i have been following your posts and i'm glad you are now feeling better, I have OA in my spine as well as RA. I.m sure this feeling will pass and tomorrow i will be feeling much better thanks to everyones support . xx
I have OA in spine too but I have been told to try and get my weight down further and keep active. Are you needing or able to do these things? I do find exercise keeps me from depression but it depends how bad the inflammation is in your joints just now. Would hydrotherapy or physio help you perhaps? I'm sure you could ask your GP for a referral. Tell them how bad things are just now please. Xx
Wendy, it's rotten isn't it? You think to yourself " is this it, is this my life from now on"? Like other have said on here, it will get better, I promise. The first few meds and how they work for you will determine your treatment. It is a case of trial and error for a while I'm afraid. I once asked my rheumy nurse is this the best I can expect, I was going through a really bad time, she told me that the only thing she could guarantee me was that I would never be a sick as I was the first 18 months.....that might not please everyone but I know how bad I was then and she was right, I've never been that bad since.
There will always be times when you are in some sort of pain. There will be places that have maybe distorted that will never be right again.....but listen Wendy, you will have a life again and it will be a good life too. I recently was able to leave the house and do part time volunteery work!!!! For me that is a huge difference.....at one point I was unable to walk, to dress myself to do almost anything.
So believe me life will get better and you somehow adapt to the limitations and even the pain. Just don't give up and trust your medical team, they want to help you to get back on your feet and functioning as normal as possible once again. Take care. X
I was diagnosed about a year ago, I feel that all I do is pop oils to help with the pain and if I miss my 4 hour slot for pills the pain is so bad, I have been on 25mg meth plus hydro plus 15mg steroids, since last august I know it helps as I had to come off for 2 weeks and god did I know it, some days I just cry and that isn't me everyone says it gets better I am just waiting for that day.
I see my rhemy in 2 weeks im hoping he can help me more as my esr and crp levels have doubled in the last 6 weeks.
hope you feel better soon and speak to your rhemy team they may be able to help.
hi, it is different for everyone but i have been diagnosed for 9yrs now and very rarely have a day without terrible pain somewhere....i have learnt to live with it and have to accept that sometimes i go a week without moving from my bed.... have tried many many different drugs but have nbeen told that even when the drugs are keeping my ra at a reasonable level the pain is still there because of damage already done....i do know of several people that have gone into remission and live fairly pain free for years...i hope you will be one of those lucky one...take care xx
I think the other posts have covered everything that can be said, its a bloomin nasty disease and the impact it has on everybody's life is indescribable. I would not wish ra on my worst enemy. Until I found this website and even before being diagnosed I daily felt like a hypochondriac with all the aches and pains, thank god I made an off the cuff comment to a locum doctor whilst seeking post op advice on an operated ankle. We are altogether in dealing with this disease so please do not feel alone. It takes so much from us emotionally and physically. I have been diagnosed for just over 18 months and it seems to get worse each time I see either the nurse or consultant as they struggle to find something to get it under control, more drugs, assessments and timescales, a wheel i would like to get off somedays. Hope things improve for you soon. Big cyber hugs.
It's a horrible disease isn't it?
I've been on MTX 10mgs, Sulpha 1.5mgs & 200 mgs Hydroxy for a few months now but I still have to take cocodamol 3 or 4 times a day - I'm hoping that I can stop taking them before long but at the moment I really need them
Just an add on re the 5.2 diet - I sat opposite a couple today at a big island festival and we got talking about food (since we were all eating a feast of locally sourced food!) and they both said they are on the 5.2 diet. The man told me that he had recently been diagnosed by his GP as having the start of fatty liver disease. He doesn't eat shellfish or drink alcohol so he was pretty dismayed by this. 3 weeks on this diet seems to have halved his high liver enzymes and he's sure it's all about eating less rich food and much less in quantity too. Having got raised liver enzymes from MTX this month I have decided to start this diet tomorrow and hope I'm singing it's praises as they were! Tilda xx
The illness is cunning, I am hopeful you will get some relief from pain soon,can you ask your gp or local pharmacist to a medicenes review, pain killers in particular, also can you take any steroids for a short time, I Appreciate they arent with thier own problems( steroids that is!) but they may be needed to help you through this time x
Hi Wendy when I was first diagnosed I was on mtx too, I made me feel a lot worse than I was before taking it, told rhumy nurse and was changed to luefonimide (hope thats right spelling)that didn't suit either so now on enbrel and its been good so far, would ring and talk to nurse, hope you feel better soon
I am sorry to see that you are in such a condition. I am also RA nearly a year diagnosed after an infection and must say that the begining was the worst. Pains which was all over, diffrent place every day, the swelling which could prevent me from walking, sleeples nights, the tears, the questions... it was all there but I said to myself I am stronger than this, My body is my temple I need to start to comunicate within.
My doc wanted me on steroids and metx from begining, but I was taking only pain relieve tab, excersising very slowly, eating healthy, going for hydrapool therapy and was hoping for the best. I started to feel better in few months, the pains during the nights were gone, I was able to walk longer distance and my fatigue was gone. I am nearly there, it might take some time, still thinking my options but over all trusting myself with my heart. I feel now more healthy and full of life and ideas of what I will do next when I am back on health track The visualisation of me being healthy again and able to do things like before helped me a lot.
Dont give up, we and our body are capable of greater things that one might imagine. Do as your inner wisdom is guiding you. Believe, stay positive and it will be a lot easer to get your health back.
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