Rock bottom: any ideas?

Hi

I'm new here. So, first of all, apologies for a long and depressing post!

A little about me: I'm 35, have had seronegative RA since my early 20s. No kids, but a lively dog.

Have tried many meds: methotrexate, sulfasalzine, plaquenil, humira, enbrel and orencia - with no real improvement. Just horrible side effects.

I've also had two knee synovectomies and so many steroid injections that I've lost count.

Currently, I'm not taking any meds and my rheumatologist says there is nothing else worth trying.

I have a really stressful job that makes my RA worse, but I cannot afford to give up work.

The last year or so has seen my RA permanently flare. Every single day I wake up at 4:30am feeling like hell. It takes me hours to feel like getting out of bed.

I can't think straight I'm so tired. I keep forgetting things. I don't want to see anyone, I just want to be left alone. In fact, I wish the whole world would switch off for a month so I can have time to piece myself back together.

Every day, I am crying and despairing about my life and lamenting what I can no longer do. I went to see my GP and told him my quality of life is so poor that I can't see a way forward. He just referred me back to the rheumatologist who has already said there is nothing else to be done.

As much as I'm still able to do many things that I should probably be thankful for, all I see are the things I can't do. I'm fed up with the endless pain and the chronic fatigue. I'm exhausted by keeping up a facade. I'm frustrated that I'm not the person I used to be - and I feel like my partner thinks that too (although he never says as much).

In short, I feel like I've hit rock bottom. I've reached out for medical support...only to find it lacking. I don't know how to turn this situation around and get my life back on track.

I hope some of you may have suggestions. Thanks xx

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18 Replies

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  • Hi and welcome. I really feel for you. I was in a similar position to you but I'm older so I left work last year. I've had lots of treatments and nothing but MTX works for me and I take 25 mg a week. I've tried biological but got drug induced Lupus so I can't have anymore. Have you called nras helpline ? They give very good advice. Your own doctor should be more supportive towards you. Don't give up and be fobbed off just keep on at them till you get what you need.

    Good luck

    Trish

  • Hi Trish

    Thanks so much for your reply 🙂

    Sorry to hear about your drug induced lupus. And I hope giving up work has helped you feel better.

    I haven't yet called the NRAS helpline. I'm really bad at talking about how I feel (has taken me ages to find the courage to post here). But I WILL call them tomorrow.

    And I will go back to the GP and push for better support.

    Thanks again. That's really been so helpful xx

  • Hello! I'm sorry you are feeling so low. I would suggest calling the NRAS helpline too. When they answer ask if you can read to them what you posted here as you find it difficult to talk. You have expressed your feelings very well in your post and could use it as a starting point in the conversation. They are very understanding and will be able to offer you some support and suggestions. Hope you get the help you need xx

  • I can't like your post as it is so sad. I think for a start you need to have another go at the rheumy maybe even being a guinea pig for new drugs as you have nothing to lose. Look into that and see if you can get some support there. You need some counsilling (sorry about the spelling) to help you through this until you can find something to help you. There is cannabis which i have heard is good for us,i am not advocating drug taking,but there is some medicinal drug you can obtain,sorry i don't know where you would go to get it. I hope this is of help for you.xxxx

  • Hello and a big fat welcome to you.

    I can totally empathise with the way you are feeling. I've been depressed, tired and in pain si long, I've forgotten what it's like to be the old me.

    Basically, I'm pipped off with being fobbed off and not listened to. Actually, being dismissed by docs has been the hardest part of the illness!

    Being told there's nothing can be done is awful, and it's hard fighting to be heard when your so knackered isn't it.

    Do speak to NRAS. I haven't done so myself yet, so should take my own advice ! :-)

    I've totally given up with my GP, and rarely contact rheumatologist, as it's like rubbing salt into a gaping sore to be told there's nothing can be done.

    I try eat right, swim and do as much as I can do. I also try and avoid nsaids, because it seems to make things worse for me. Also getting out with other people helps lift my mood a bit. I go for a swim with a group of other women, and the exercise and gossip cheers me up :-) can you do something like that?

    Bless you, and thinking of you.

  • As well as talking to NRAS I would also ask your GP for a referral to another rheumatologist for a second opinion. I find the attitude of your current one rather disappointing (to put it mildly!). How dare they give up until they have completely exhausted all options.

    You have been ask to try traditional DMARDS, plus two anti-TNF biologics and one that targets T-cells. All these drugs target very specific bits of your immune system, and there are other drugs that target other bits.

    So there are drugs that target IL6 (Tocilzumbab) and one that targets B cells (Rituximab). There's also a new kid on the block called Xelianz / Tocacitnib which is a JAK inhibitor. Have any of these been mentioned? Or old fashioned drugs like Gold, or ones that are more general like Tacrolimus? You need to be told why none of these would be suitable for you. Push your GP hard for another referral as I think this is unacceptable. Especially at your age!

    It's tough to keep going and fighting for this, but maybe the next drug will be the magic one so try to keep pushing.

  • You are exactly the reason why it is so good to have forums like this Helixhelix. Your knowledge is amazing!

    I really feel for you LoneEra. It must be massively frustrating for you to be told that you've "exhausted all options". Surely that can't be the case? I would absolutely ask for a second opinion. Does anyone on here know if you can ask to be referred to a specialist outwith your local NHS area (I assume you're from the UK?!). Maybe there's a consultant out there who specialises in treatment resistant RA that someone can recommend and you can request to be referred to? I would certainly look into it.

    I can totally relate to how you are feeling so low. I became really unwell suddenly at the start of 2016, and have found it really hard to come to terms with receiving this diagnosis (I have AS) and how it's affected my life. I just kept bursting into tears all the time and felt so low constantly. I finally bit the bullet and went to speak to my GP. I've now been on an antidepressant for 2 months, and it's really starting to make a difference to how I've been feeling. It's another option worth thinking about if you're feeling so low.

    I really hope that you get some answers and relief soon. This is an amazing forum, you'll be glad you found it. Take care. Mhairi. x

  • I couldn't agree more.there are always other options.new drugs being licensed. Get referral to another rheumatologist. Has anyone recommended a course of steroids? And it is normal for mood to be low with any long term conditions. Try to remember that this will pass and things will improve for you.iv been there.hugs and prayers to you x

  • I was reading about low dose naltrexone yesterday, I have sero-negative RA too and have been struggling for past 18 months to get another drug combination that helps. Long story short my sister who lives in Australia was diagnosed with fibromyalgia and after trying loads of things is now on LDN and says it helps her massively. It is used for RA patients and there does seem to be some pretty positive feedback. Worth looking into....

  • There are posts about it on here. I've never tried it (no need to thankfully) but it seems that it's something you can use alongside traditional meds. It's not licensed for use in RA in the U.K., so it's a personal decision where you need to do your own research to decide if it's worth it for you.

  • Wow. Thank you all so much for your replies and suggestions 🙂

    I will get on the case today with them! GP, second opinion, NRAS helpline and a social group. Sounds like a plan.

    It's honestly been a real relief hearing that others have been through similar experiences - and that there are other options.

    Thank you again and I will keep you posted on progress. The only way is up xx

  • Hi, I would ask to be referred to a different rheumatologist at a different hospital. You are allowed to be referred anywhere you choose and it might be you need a more specialist hospital. Definitely call the NRAS helpline for advice. An antidepressant might also help. Hope you get the help you need. Good luck. X

  • Have you tried a new rheumy? I was also diagnosed with sero neg RA but as none of the drugs were having any effect we discussed if in fact I had Psoriatic arthritis, even though I have no psoriasis. I am currently in the early stages of taking consentyx to see if that will work. Perhaps you need someone new to look at things from a different perspective or with new eyes. I really feel for you as I also work fulltime and cannot afford to stop and have been through the wringer like you with no meds for 18 months and just dragging myself through each day til I could come home and go to bed. It is not a life. Please talk to your GP too about a antidepressants as they may also help if you take them for a short while to help reset your brain, which must be so exhausted and fed up too by now. I wish you well and please feel free to come back and ask for help or just to vent.

  • Hi. I think you need to be referred to another hospital. Tho they must follow similar guidelines there attitude towards In hope will be somewhat kinder rather fobbing you off !! It is not professional to be told "there's nothing else to be done"

    I am sure with the right support, listening and understanding would help through bad days to become brighter!!

    Please don't give up!!!

    Sending love and {hugs} xx

  • Hey, I really feel your pain. I am very new to the NRAS too. It has taken me 4 years to feel comfortable talking about my RA to people so I can understand how you are feeling about that. When I went to the doctors 4 years ago with pain in my joints, I got referred to a RA specialist. They did numerous blood tests, ultrasounds etc and after all of that they turned me away saying there is nothing wrong with me and that I should just take ibuprofen every day..I felt so stupid and embarrassed feeling like I had 'wasted their time'. Didn't go back until this year. Now at a new GP, they referred me to a new specialist and with a little pushing and loads of research from various websites including NRAS and support from my very understanding boyfriend, we went into my first consultation knowing exactly what questions to ask. Luckily they did all of the tests (including MRI) and have diagnosed me with RA. Even though this doctor diagnosed me and put me on methotrexate, I still didn't feel like they had any time to really listen. I never got call backs, had to wait 4 hours for every appointment in the hospital (I work full time too and this did not go down well with work) so I made the decision to change RA specialists again. Now I am much happier with my specialist and I feel comfortable enough to tell him how much I am struggling. So my advise is that it can take a whole load of specialists to go though until you find the right one for you, and to me it sounds like this one isn't for you! You need someone who is more helpful and understanding.

    I am 27 and I am finding myself bed ridden 50% of the week. Thinking methotrexate pills aren't for me so I am going to request the injection. I really hope this helps you feel less alone with what you are going through!! Sorry for the super long, depressing story xx

  • I would say you need a drug review as you should not be bed ridden 50% of the week (although not sure how long you have been on MTX as they can take 3-4 months to show improvement). You may need extra MTX or another drug added in. It can take time to find the right combination of drugs for you. Have you a rheumy nurse helpline you can discuss this with as things can be changed between consultations or appointments can be brought forward. Farm

  • Hi,

    The only useful thing I can add on top of these replies is take a 3rd person in with you on your next rheumy appointment as often such an off handed dismissal will be side stepped when there is a witness' present - sad but true! I hope you get a more helpful consultation soon.

    All the best

    Ali

  • Hi LoneEra

    So sorry to hear you feel that way,but I'm pretty much there myself at the min - I had to give up working,even though I couldn't really afford to,two years ago at just 41 as the stress it was causing wasn't worth the hassle - I had absolutely no life other than dragging myself from bed to work,then home and sleep to repeat it all the next day,plus a very inconsiderate boss who just made every day a living hell for me,so I decided to do something for me for the first time in my life EVER!!

    It feels weird not working,as I've always worked since leaving school at 15(my birthday falls on pretty much the last day of summer holidays,so was legal for me to work at 15 back then😊) since then,I foolishly thought I'd be able to take 6 months off,get my health back on track and then start a part time job more local,so less stress,oh how naive I was - it took them from the start of 2014 to pretty much sep16 to get my meds correct and working,I had about 10 days of almost a glimpse of the 'old' me back before someone very kindly rear ended my car in stationery traffic,and my body's just completely knackered all over again,along with the head screw that goes with it all😩 Ontop of that,I'm going through a pretty nasty split from someone I'd been with for almost 7 years,and it's gotten to the point where I've turned into someone I no longer recognise as me,or even like - I cry at the drop of the hat,and can spend weeks stuck indoors just staring at the same walls because I've lost all motivation to go out,or even get dressed on most days. I was put on anti-depressants after the car accident,as that really made me feel like the rug had been pulled from under me again,but now I've been onto the gp's about counselling,as just one of the side effects I get from the anti depressants is that every week when I have my enbrel injection,I now have blood just pouring down my leg - it only ever happens when I've been on the tablets,even though I've tried two different sorts,and as I pleaded with the gp,all the pills do is mask the symptoms - I need to get back some self worth,and for that I actually need to speak to someone,not just keep popping pills - unfortunately,the system my Drs use is a self referral one which means they print out a huge questionnaire and you have to fill it in and send it off to be assessed...., I can honestly say that it's still sitting here a week later as I haven't even got the motivation to fill it out! I literally felt like I'd hit rock bottom,as you obv have,as my diseases have cost me my livelihood,my friends (it's amazing how you quickly learn who your true friends are when you become ill like this) and it's also cost me my relationship,because he just couldn't cope with me being ill and not the Independant woman he met all those years ago,as much as he said differently,his actions always spoke louder than his words!! And then one night last week,after spending yet another day hidden away from even my mum,I remembered I hadn't been on this site in ages - within an hr things had already made me smile - it truly is fantastic how I went from feeling like 💩 to almost feeling normal again in just a short space of time,because after speaking with people that are going through the same issues with their health as me,it makes you feel less isolated,and not so much of a freak - I just wish I hadn't had a long period of not using it,but I suppose we all cope with things in different ways,and at the time I needed to distance myself from everything while my homelife was so upside down - there's only so many things I can concentrate on at any one time now.

    If you haven't already,pls reach out to speak to someone,if not your gp,have you tried theclocal crisis team? As my ex had bipolar,and I was his carer,when things got bad I was talking to them on a weekly basis,and they even gave me my own support worker to help me through those particular times,so I'm even thinking of talking to them again,after all,it's all mental health,so must come under the same umbrella?!🙏🏻 Otherwise,I know plenty of people on here have tried the samaritans on quite a few occasions - it's just talking to anybody so that you don't feel like life's not worth it..... I actually said that to my mum last week when I was at my lowest,and she just told me things can't be that bad..... nothing like kicking someone when they're down,eh? I suppose unless you've been here,and are in the process of grieving for the life you had,especially when you're as young as you are,it must feel like the end of the world.... I know that's how I felt and I'm 43,soon to be 44 - certainly didn't expect to be 3/4 of the way in my box at my age,thought I'd have a good 20 years of working and socialising left at least?!😤 And yes,I'm angry with that fact - I feel like I've been robbed of my life,although I'm still here,it just felt like I've lost all independence,and can't even put my patches on my back myself because I had a severe reaction to one a few yrs back,so now have to have a barrier spray applied first - I literally feel that if I can't even do the simplest of tasks,then what else is there for me? I'm unable to work because of how my symptoms are like a yo-yo,so can't even commit to anything part time - I've gone through all of my savings just to live,and as for holidays,there's nothing more depressing than living 20 minutes away from a major airport yet knowing I can't afford to go away for the foreseeable future😔

    I know there are prob lots that are worse off than me out there,but they don't affect my life,and when you're on your own,everything just seems that much harder to do,I'll get through this stage,as I have before,it just may take longer than I'd like,but I wanted you to know that you're not alone,there are plenty of us that feel like we've reached the end of our tether at many points along he way,yet somehow we always find the strength to pick ourselves up and carry on,because if we don't,then no one else will - and who will take care of our furbabies if we're not here??

    Big hugs,and be kind to yourself - speak to your gp about counselling if you think it's something you could do,and definitely take some time off work to catch your breath at the very least - no wonder you're feeling low if work is causing you to flare constantly,yet you're not allowing your body to recover from it - I know how hard that can be to do - I used to work in the financial/ commodity /energy markets sector,and taking anytime off for anything was almost frowned upon,let alone long periods for ill health,but I realised that no matter how hard I'd worked for them previously,they didn't give a stuff about me,and that's when I decided to finally put myself first for the first time EVER!! It's been hard at times,moneywise,but when I look back at the stress I used to put on my body by constantly being ill,it's worth being skint for just so that I don't have to wake upto an alarm each day.

    I'd also speak to the hospital about seeing another rheumy if you haven't already,or just someone that can start from scratch with you - sometimes all it takes is a fresh set of eyes to go through things from the start again,and they may even spot something the previous specialist had missed? Surely anythings got to be worth a shot if you feel you have nothing to loose?

    By the way, sorry for the 'war and peace' reply😳

    Here's hoping you find the strength and help you need to start feeling more positive.

    Take care of yourself

    Nicki x

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