My day

Met with my rheumatology nurse today- she was so lovely and shook hands with me ever so gently I nearly started crying. We discussed what has been happening since December and then I announced that I thought perhaps the consultant was wrong and it was not RA I have- she looked at me and asked why, so I said with petted lip, my bloods are not showing a RF and I am seronnegative, also I just hurt everywhere, not just the major joints, but my wrists and toes and even my friggin jaw! That pain meds are just not doing it for me, MTX of 10 mgs, only started three weeks ago is only succeeding in making me sick all the time and the anti- emetic she has prescribed is not really helping. Also every single bone in my body has developed the ability to be able to crack- and.......... occupational therapy have contacted me and i have to go see them!!!! I am not an invalid! She smiled and asked if she could be totally honest, of course I said- she laughed and said, you need a good slap and I am telling you there is no question of this not being RA. At that I burst out laughing and admitted I had sounded pathetic and angry, all normal she said, so how do we move forward.

Well the long and the short of it is I need to learn to pace myself, I need to accept that while this disease continues to be as bad as it is right now, and it seems to get worse by the hour today, that I really do need help to manage it. She has changed me to subQ methotrexate and if no improvement in the swelling and pain will opt for IV steroids in two weeks

I find myself crying so much just now and all I want to do is to be able to go for a long walk in the hills just as I was doing three months ago, go for a cycle ride, plan my long distance walking holiday , knit some baby clothes, redecorate my home and not be sore and exhausted. The child in me just now is shouting I want my old life back, am so so angry and I know it is ridiculous and petulant and I know there are others so much worse but ..........

Hey guys, I am sorry for venting and truly I will work it out but for now I just wanted to share and talk with someone who understands- who will show me compassion but not pity, and will laugh with me when I have to use my teeth to get the top of the milk carton of and cry with me when the waves of exhaustion hit. Thinking about you all out there

21 Replies

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  • It is possible that it could be the other type of sero-negative arthritis - spondyloarthritis, rather than sero-negative RA, and that would definitely be worth asking your rheumatologist about. That would fit with the widespread "enthesitis" type pain that it sounds like you might be describing. Spondyloarthritis doesn't generally respond to DMARDs anywhere near as well as RA does, so if you don't get any good response from MTX, then definitely try and get your GP to organise another earlier appointment with the rheumatologist and ask them about spondyloarthritis. If it was that, then they would probably put you on regular NSAIDS to see if you got a response. The steroids should work for any kind of inflammatory arthritis though, so hopefully you will get given an injection and get some relief. The only problem with steroids is that they aren't safe to use regularly or long term, so the rheumatologist would still have to find another long term treatment option for you.

  • I can see your distressed and I am sending you a gentle hug. This disease itself sends you emotions all haywire.

    I am on methoject and have been since June. It has given me some relief, tho my inflammatory markers are to rising again. But it did however easy my joint swelling for about 4 to 5 months. So don't be down hearted , you have the chance it will work better for you than the tablets. And it doesn't affect your stomach, in injection form.

    Keep a daily diary, this helps you to see any slight improvement too. And note what make you more tired and pace yourself.

    Sleep and rest as much as you can.

    Be kind to yourself, where others can help. Let them.

    Best regard x

  • Thank you earth witch- your comment for spondyloarthritis is something I doubt I have. My spine is not affected and really I did not mean it when I said I did not have RA. I think I have simply been refusing to face up to this and since the treatment for me is so horrible and of course with no response expected from the MTX for at least 6 weeks more likely 12, and now as I am watching the disease progress rapidly am simply upset. With no one to talk to I just vented here last night.

    Watson3 thank you so much for the hug, truly is all I need right now and just want someone to hold me and let me cry then go and make me a mug of tea!

  • Hi KatieC

    I so know where you are coming from. I had been going back and forth to the docs with pain for a few years then last march I was diagnosed with diabetes and at the same time the doc said he thought I had Polymyalgia Rheumatica (PMR). The treatment for this is long term prednisolone which in turn increases blood glucose so he would not put me on them. By the end of June I was in tears most days with the pain so went back and he put me on a reducing dose of pred. Boy did I feel like a new woman, nearly all the pain gone and we went on holiday and had a great time. Finished the pred and BAM the pain was back big time so reluctanlty I was put on long term pred. Every time I returned to the doc I complained about the painful hand so was sent to a rheumy even though I did not have the RF. On 23rd Oct last year I was told I had RA and he doubted I had PMR. I had steroid injection and put on MTX and told to reduce the pred til I was off it. The MTX is not working after 13 weeks and every time I reduce the pred to low I flare. We are all now agreed I have both RA and PMR the RA being seronegative. I am back at rheumy in March and as my CRP is not reducing I will probably be put on MTX by injection to see if that makes a difference. The thing is when I was on 30mg of pred (now down to 13mg) I got my CRP down to 14 but since reductions it is 26 and over. So to me the pred was working.

    I cried yesterday trying to hoover my stairs carpet, it really needed doing but I was in so much pain I just sat at the top and cried. The thing is though I am 49 and still have 4 of my children at home 2 of which are 18 and 20 and they were both in watching me cry. They don't know how to handle their mum not being able to do everything anymore. I used to have my own newsagents til 6yrs ago when hubby had cancer (he is recovered) we closed it down. But I ran that, did the school runs and kept house and walked everywhere as I don't drive. Now if I manage to walk to town about 1 mile away I am out for the count when I get back. I can't take my 6months old german shepherd a walk and have to rely on hubby to do it. I also home educate my 2 youngest of 13 and 7 which suits us as I could not do the school run.

    I think we all sit and wonder "why me" is our own bodies telling us it's time to slow down??? Who knows? but like you I want my life back, I want to go walking to town or catching a bus to the city and go shopping etc I also want to be able to dish my dinner up without waiting for someone to mash the spuds and lift the pans. We will get there when our meds are working, I hope so chin up, keep smiling and very gentle hugs to you.

    Sue

  • It is such a miserable diagnosis that it's hardly surprising your brain didn't want to take it on board, I still have periods when I this it all must be a horrid mistake and I can stop taking this mountain of pills. Must be even more shocking after your daughter's diagnosis. But she's doing well isn't she? So no reason to think that you won't be the same in just a few weeks. So be nice to yourself, and allow yourself to weep a bit. We all do I think from time to time. But truly it will improve...I was completely amazed at how much better I got after a few months, so hang in there. I thought I had lots of permanent damage as could hardly move, walk, clench my fists, pick up a teacup and so on. But now most things are fine. And I've found a way to pace myself quite naturally so it doesn't feel as if I'm denying myself things, or having to stop stuff so. Can you give yourself a pamper day today, with lots of treats... Take care. Polly

  • Yes I'm with Polly. I was diagnosed 13 months ago and still find it hard to accept now, mainly because I'm doing so well on the drugs that I think its all upped and left! But for the first undiagnosed 9 months I kept trying to find other things it could possibly be and then adjusted pretty quickly once I was diagnosed - as at first it got worse before things properly improved so that a lot of my mental energy was used up researching and learning all I could about RA and the drugs.

    The thing is thing is Katy that nothing happens fast in rheumatology - but from the sound of things your disease onset was very rapid so its unsurprising and completely natural that you are feeling absolutely devastated because your mind hasn't had a chance to keep pace with your body. And things will improve for you - maybe sooner rather than later. Has the nurse you saw upped your dose of MTX as well as put you on sub cut? If not I'm sure that will come next and you may be like me and find that taking MTX by injection works brilliantly - not only by overcoming the nausea but also by making it much more effective. I read online that they carried out trials in 2008 and MTX by injection was found to be significantly more effective. And on top of that its early days for this drug - for me it didn't really work fully for 6 months and then at 9 months after diagnosis I started taking it by injection and it had made an enormous difference and finally my ESR is down from 62 to 26 - a steady decrease at last!

    I tried to convince a GP friend that it had all been a big mistake. She's been around from the start of symptoms kicking off 2 years ago as a visiting pal. She just looked me straight in the eyes and said "if having tremendous pain and swelling decrease because of DMARDs doesn't convince you that this is RA then having an ESR of around 62 for months on end bl**dy well should!". But it just plays havoc with most of us this RA so you are reacting entirely normally. Please be very kind to yourself indeed. Tilda x

  • Ps sorry my silly spell check changed your name from KatieC to Katy! Xx

  • Having a diagnosis of RA - or any other long-term illness - is just like a bereavement. We have lost our previous good health and have uncertainty and difficulties ahead.

    In the same way, we go through the stages of grief - denial (it isn't true), anger (why me, it's something/someone's fault), and eventually acceptance and coping.

    What you are feeling is entirely normal and your emotions are shared by most of us here.

  • Hi ya, yes we have all been there, that's why we check into this site, you do get listened too and we believe every word you say and understand. Don't beat yourself up, relax~!!!!Ha ha, but seriously if you fight it IT will fight you! and we finish up with a bigger beating. none of us excepts this diagnosis, we all hate it with a vengeance but keeping in this place doesn't help us at all, if it did there would be alot more of us shouting hallelujah it's all a mistake, instead eventually and after a lot of *******! we get the message do ourselves a favour consume the meds, take a rest, believe the treatment will work, then eventually it does, and all this hurt and pain will be in the past and a distant memory. I now go to the gym, walk, ride my bike, swim, stay awake all day'ish, don't hurt every where and at last am getting back to the happy me that used to be. this has taken a couple of years since diagnoses but we all get there in the end. Good Luck to you and what ever treatment you get, perseverance is the name of the game! sorry!

    Ps most of us will say, we were the most active of people before this all happened, so we are with you, keep tuned in.

    All the best Carol

  • Oh yes and I forgot to add that I now go for long walks again and I'm sure you will again one day in the not too far distant future. Hang in there please things will get better. Tilda x

  • katie

    i know where you are comming from when it hit me i thought it was the old knee flaring up after several years being ok

    i was verry active and nothing was showing in my bloods

    you then find this thing moves into the other knee then you teeth and moves all over the body and you find yourself feeling realy am i going mad is this in me head but its not its this thing moving around and its a right pain in the arse ya think like i did 6 months and i will be pulling back from this

    then some things subside for a few days and ya think hey im on the mend

    it realy is like having had a fight with a boxer and waking up some mornings like ya had a beating up.

    all you want to do is have a realy good walk like you used to.

    yesterday i was not to bad

    and i sometimes wonder well other people wake up in pain on here and i think to myself well i sleep from about 11pm to 6pm so maybe im not as bad as some of the people on here are.

    but this morning in woke up aching like hell for some reason and thats the first time this has happened.

    and every joint in me body this morning cracks and aches.

    and the worst is cold feet it brings on like your mussles tensioning up stops blood flow.

    I have found out that if i take bruffen which ive taken sometimes through my life for a little ache that it makes me WORSE than ever.

    earthwhich and tilda on here make a lot of sence to me on your condition and it may be that you have to try lots of things first to see how it goes after such a short while.

    If its any consulation im on nothing im sort of in limbo and had to do me private stuff realy cos noone is beliving me due to nothing showing in my bloods. and its been since april.

    my next appointment is back with my knee specalist in 2 weeks.

    rumatology dosnt move fast then you need a good one.

    im only going back to the knee man cos i asked for phisio and she dosnt like me knee and the way its working.

    you hang in their you have someone to try things for you.

    i dream of sulfazine or anything to help me get rid of this thing even just to take it down a few notches would be good.

    regards john

  • Hi Katie,I also am rf negative and have been told i have sero negative arthritis too,so plse don't worry about blood not showing this and that,originally my dr said I don't think you have RA as your rheumotoid factor is negative,then in the nxt sentence said there's a possibility you are sero negative RA,which my appt with rheumotologist confirmed.but consultants usually do the anti ccp blood test to confirm RA and I was strong/ positive,and this is how I was diagnosed.you probably have had this blood test too Katie ? If you don't know plse ask at your nxt appt.i hope they have increased your mtx too a little bit ? I am on 15 mg a week and been doing so well but this past week niggles and aches and pains coming back,hoping it doesn't last like you.take good care of yourself Once you get all your meds sorted you will be on the right track. Lots of love Michelle xx

  • Shell please be a bit careful about assuming the anti-CCP is always positive even when the RF isn't. For me its the other way around and my anti-CCP was negative but apparently I still have RA. Its more a question of if your anti CCP is positive you almost definitely have RA - rather than if your ant CCP is negative then you don't. Sorry but it makes me nervous when people suggest that there is a conclusive test for RA. Tilda x

  • Yes this is what I meant this is why I don't write much.but wot I meant was a strong / positive is a clear diagnosis of RA on most people .x

  • Yes don't worry Shell you were just helping I know - its just that quite a few people on here are negative for both and it sounded as if you were saying that anyone with RA would have a positive anti CCP and they aren't always clear cut like you were. Keep posting you are doing great on here xxx

  • more poor fellow sufferer in seronegative ra

  • Hi Katie,

    can only agree with what everyone has said. A year ago I felt much like you. From being pretty active i went to being hardly able to struggle round the block. Now since May on Mtx, i'm feeling so much better I'm actually considering going skiiing next month (if I can cram my feet into the boots that is!) So don't lose hope, be patient, keep believing in the meds, be kind to youself.

    Very best wishes.

    Caroline x

  • Hi,I really don't know what's better,to get a deffinate diagnoses then you have to face it & deal with it,or be like me have all symptoms & get the treatment but still think it could be all in my mind......I still feel a bit of a fraud. This is a great site to vent your feelings katie & such good advice. Take care x

  • I'm more like you Caza re feeling a fraud although I do have a rheumy diagnosis I always half expect it to be overturned. X

  • Bless you wish I could give you a hug. RA flares up so aggressively but it can just settle down again. That's how mine is try to not give up hope. My advise is listen to your body the fatigue is telling you too rest the more you listen to it the sooner the RA will calm down . I know self care is a must I fought my exhaustion and when I rested it helped a lot. Feet up good film it's freezing outside too cold for walking you can do that in the summer when you've rested . I found apple juice helps my RA stay away from acidic stuff

  • Hi everyone- apologies for not saying a great big thank you before, have simply been on survival mode and accrued energy has been going on the basics of working and looking after my family. I really do appreciate your comments and read each of them repeatedly and will keep close when I have bad days-

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