It’s been three weeks since my last post where I’d hoped to be shot in the shoulders to relieve me of this pain. My physio insisted it be put into me peripheral. I got one day relief and have suffered for the best part since my last post. I’m so low... I can’t see an end to this pain which radiates down my arms, stops me from performing the simplest of daily tasks and I feel like an old woman who quite frankly couldn’t care if I fell asleep and never wakened. Week 11 of triple therapy and not a bit of relief. I can’t understand why my mood is at its lowest, I don’t seem to be able to shake the feeling of deep emotional lethargy, with no interest or care in anything.... i just want to sleep and not see anyone? I try to stay strong and believe it will get better but I just can’t understand how all this crap can be pumped into my body and still no relief. Sorry, but I always feel better when I talk to those who know what I’m experiencing. I hear lots of stories of quick working therapies for some so I feel at a loss why this isn’t working for me?
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Dear Piglet. Try not to despair, many of us have been through similarly awful times and there is a wonder drug waiting for you somewhere. It’s such a shame that finding the right one can be such a trial an error exercise. They try all the cheap drugs first of course. But it seems what treatment you’re on is not working for you (yet?) and you need to let your Rheumy know that you’re still having such a horrible time. I hope you will be offered something else instead and soon. Meanwhile moan and rant if it helps and have a good cry too. Then come out of your corner fighting! Don’t let this awful disease beat you, fight back!!
Dear Lola thank you. I know I need to be patient but the pain is debilitating and with no let up it’s hard to imagine I’m ever going to feel peace in my body again? I used to be so active and now I’m just a blob with no interest in life. I’m fighting 🥊
Hi Piglet, 😢 It won’t be like this always. If this triple theory doesn’t start to work very soon I think your rheumy will want to try something else. They have to try the meds on the lower rungs of the ladder first before putting you on the higher level ones, for several reasons. I’ve had some real lows and lost mobility and been in bed for weeks and unable to so much of anything yet with the right meds and some help from a physio I came back a few times from some bad times when meds failed. (Or when the hospital delayed my infusion.) I hope you can tell your rheumy your concerns that you are worried this triple therapy hasn’t started to work for you. I slept 18-22 hours a day for three months in 2015 at my lowest ebb. I managed to come back and I’m sure you will do as as Lola said .. come out fighting! You must control the RA rather than let it control you. Gentle hugs and I hope that you can soon voice your concerns to your rheumy about feeling so low and worried the meds aren’t working. x
NK.... your journey sounds like a roller coaster, and it helps me to know that you have managed to stay strong not allow it to control you. I find you all so determined and strong and that’s good for me, it helps me hugely.
Thank you. It can indeed be like a rollercoaster when you are between meds etc and you go downhill but fortunately I’ve been quite steady the last 7 years in my med and long spells inbetween in previous years when meds have been working well. When meds aren’t doing all they should, or you’re waiting for them to work, it feels like you’ll never be able to doing anything near normal or move but you do. Whilst you are in the midst of all this it feels impossible like you’re lost in a forest of thick trees but you do get out into the clearing and feel much better. Patience is thin when we are in pain and can’t move etc but I know you will get there and I hope it is soon. 😢 Most things we feel at the moment emotionally are amplified by the current virus situation, and delays and setbacks have been happening for many, so let’s hope the rheumy departments are all getting back on track and you can speak to yours soon. So many of us on here have had ups and downs and our fair share of the downs with failed meds and uncontrolled arthritis, but as I said the good news is that the vast majority of us find something that suits us and relieves us and gives us the health and mobility to have a good life. As some of us have said though, don’t persist unnecessarily with a med(s) that are doing very little or nothing after the recommended period of time for it/them to take full effect, so fingers crossed for you. 💗
Finding the meds that help you can be a very challenging time. You’re on week 11 now and you may find that things start to improve soon. The 12 weeks is only a guide, for some it takes much longer but there are things you can do to help whilst you wait. Have you looked at the NRAS website? There’s lots of helpful information on there and they have a helpline for support too
Have you spoken to your GP about how you are feeling? Do also keep your rheumy informed about how it’s going, they may be able to help but if you don’t tell them they’ll assume everything is going ok. I hope you start to get some relief soon but feel free to come here to let rip whenever you need to 🤗
Thank you kitty. Yes I called the nurse yesterday and she is talking with consultant in the hope a steroid can be put into the shoulders. I’m not sure I can get it as I had a jag only two weeks ago? I’ve been taking cocodamol and paracetamol but it doesn’t always touch the pain. I’ve bought a TENS machine and using it this evening...... I do try to help myself but nothing I do gives me the huge relief the oral steroids gave? ...... sleep deprivation is not good.
Part of this disease can be fatigue, depression and all over misery. Might it help to ask your GP for some therapy? Many of us need this support, especially at the beginning. The real you will come back eventually, but at the moment the disease is still uncontrolled and governing your mood.
Helix..... yes, I see my mood being very low, and think I need to ask for some help right now. It’s just overwhelming, the feelings of no interest in my life, it worries me that I can see no light in that tunnel? I’m normally such a chirpy gal......
It does sound like something to help with the depression could benefit you. It’s a vicious circle the RA is bad so you feel depressed and the depression makes the RA pain worse and then you feel more depressed and around and around you go. I would definitely speak to your GP as you sound worryingly depressed. They also might help you sleep more too. Good luck x
I understand. Some of those words I have said myself recently to the rheumy. They went straight by his ears - took no notice SO I’ve arranged to see a psychotherapist privately. Living a half life is no life for me. My GP has been more helpful tbh. Try asking for help for your mental state whilst they keep trying to get a drug solution. It’s real, it’s horrible. Chronic pain is debilitating in every sense, and yes you lose your old self. It’s heartbreaking. Take care.
Totally agree with you HH. I think we can feel ashamed we feel so low and can’t jolly ourselves up. Feel inadequate and lost. I had some support therapy when I first was diagnosed with RA as I felt I lost everything physically as I was a competing athlete and a fell walker of 20/25 miles every Sunday, so it was hard to take. I saw a lovely guy at my GP practice tho came every week to see patients, who specialised in this kind of “grief” if you like to call it, as they told me you grieve for the person you were. I did just that at first. I had six sessions with him and he said I was one of the most level headed people he’d met with physical issues and had adjusted well physically, but I knew in my mind I had to adjust. Acceptance I think was the word! These sessions were so beneficial and my rheumy recommended them as she said she’d love to talk to me about what to do, but she didn’t have the time in her rheumy clinics to go in-depth, so had to refer me on. My lovely partner listened to all I ever said to him which wasn’t a great deal to be honest as I didn’t really complain or reveal too much to him, but he was always there for me. Still is. I felt it needed to be an impartial person. It usually does.
So yes I totally agree it’s worth asking if you can have some talk time with a professional person. I would never have dreamed of doing so had it not been suggested. That was 1996 so a long, long time ago but I’m sure they do something similar still. I had six sessions of one hour face to face and I’m sure they will have to be via the phone/video phone now but that’s excellent too I’m sure. The guy made me realise it was normal to feel what I was feeling. That was a huge relief. We had quite a giggle too about things. I’m a very strong minded person, but when your body gets attacked by such a condition you temporarily lose faith in yourself and your capabilities. x
Pain can be a vicious cycle, we can't sleep, it drags us down, we cant do things, we get frustrated, we may cry be low, the pain wont go and it can spiral before you know it. As you say it gets overwhelming and everything becomes an uphill battle or you lack the energy or motivation to do even the simplest things. Sorry that sounds a bit doom and gloom but I think we all go through or have experienced differing levels of this at some point with our RD. Sometimes it's helpful to be able to recognise, which you have what is happening and how you are feeling and maybe have some ways of trying to manage, distract, cope and relieve those feelings. Some years ago now I went on some life long illness/ pain management sessions and gained some helpful tips and information for me which I utilise. I also went along to a meditation class with a lovely lady who both adapted her techniques to enable me to take part and gave me some helpful ways to cope better. Again I have accessed talking therapies too and over the years have acquired my 'Mary Poppins' bag of coping/ distraction techniques (a virtual bag of stuff that helps me manage). We are all human and have our times when things aren't great and I know this only too well. Some days it can feel hard to be strong and keep being strong. Again we all know our bodies and what works for one person may or may not work for another. Although it is always good to hear from others on this forum of new ideas, suggestions and just to know that people really understand and 'get it' as this can be hard when people around you may not understand or fully know how you are feeling.I think it is a positive thing that you realise the disease is controlling the way you feel at the moment and that speaking out is good too. I hope that you will find something that will work for you and also don't be afraid to build up a little 'bag' or 'store' of techniques of your own to help you when the path sometimes feels a little bumpy. Take care Piglet x
Everything you write is helpful. I have found myself using that old “just a spoonful of sugar helps”...... I’ve got a wonderful array of items I have bought over the past few weeks, to help, and of course they do, it’s my little bit of heaven during all this, Epsom salt baths, tens machine, lavender heat bag, fluffy hot botty, massage, wrist splints, cbd, front fastening bras 🥰...... thank you for the lovely reply pippy25
Hi Pippy .. I think we do often need to have help from our fellow RA warriors/sufferers/friends .. whatever we refer to them as. Also an impartial professional person can often help us see that we are strong and we can do a lot to help ourselves. Control the RA and not let it control us. Also that it’s ok to feel angry and sad and frustrated but then make that into positive determination to get back on track. As I said in my main post I needed someone impartial to tell it all to.. not easy at first as I’m not a complainer as such! I’m a glass half full girl. I have found art and hydrotherapy my main saviours as well as my hubby of course. Also music has been a huge healing element for me and love shows. Always has done. I found the strength and enthusiasm to go back to Uni and do a BA Fine Art and an MA Printmaking, so I don’t know how I ever did those but they kept me out of mischief and kept me mobile and my mind active as well as pursuing my creative skills. Art isn’t always about therapy for me as I’ve done it since I could hold a pencil but if it helps then do it! Whatever makes you happy and distracts you. Gives you pleasure. I love the countryside and walking although it’s much much less walking than I used to do, I am still doing a little. Adapting to what you can do even if less than It was before is very positive. One rheumy registrar guy I saw early in my RA said to me .. I want to talk to you about your disabilities. 🤨 I said I’d rather talk about my abilities instead of you don’t mind! He looked surprised! I love your Mary Poppins bag! I actually have a couple of MP travel bags! Black tapestry on a frame just like her carpet bag. 🤪 Haven’t mastered the effect of flying with my brolly yet though. 😁There's a thought .. socially distanced air travel! x
Thanks NK for your post, it's funny you mentioned about the rheumy registrar and his shall we say less than encouraging comments, I had a similar comment from the 1st rheumy nurse I met 18 years ago, who sat opposite me and fanned out a load of leaflets (like a pack of cards) and said Rheumatoid Arthritis, now you need to start mourning for the things you can't do now and won't be able to do in the future. Which I wanted to say at that point thanks for the positivity and encouragement there but instead just looked at her in disbelief. Having a mum with RD and working with children and young adults with physical needs I was aghast by her comment and know whilst RD can change the course of your life....my life was not over and as I have come to know, there are always new things to discover, learn and ways of adapting things to enable. Sounds like you have lots of good ideas and things to help you too. Yes there are times when the going gets tough, but that's when my 'bag' of coping and distraction comes in. As for Mary Poppins way of travel....not sure the air/ travel industry would be happy but you are right a good way of socially distancing travel. Take care x
Thinking a lot of us feel like this with the pain and frustration
I was in a bad place at the start of my illness and a not brilliant place when a massive flare appeared during lockdown when you could and even now hardly see any one bust prescription over the phone for oral steroids oramorph, etorocixib,. Co codamol amitrypline uugh
One ore payment certificate later, couldn't lie or sit down it's now in my facet joints
Sorry to hear that summer...spine issues are so debilitating. I found gentle standing Pilates helped me with facet joint issues...inasmuch as I learnt to relieve pressure by always engaging stomach muscles. Are you in a flare at the moment or is your disease not well enough controlled?
Poor you...thankfully things are on the up again. ....flare probably exacerbated by your sterling stint during Covid...you deserve a gold star for that. ⭐️
Stay strong. I know how difficult this can all be. I don’t have Lupus, but, I do have SScl. I, too, have been getting down lately. I am looking at starting CBTherapy. Try to get outside yourself and take one moment at a time. I realize that can take a lot of energy, but try. There are some good books on the practice of mindfulness, perhaps you could look into that for some relief. I am sending all my positive thoughts your way. Don’t hesitate to reach out. X
oh been there so many times when you can't see the light at the end of the tunnel, but you will !!, You just got to hold on to that, give in to it, rest
Hi ya so sorry to hear how you feel I remember it well I wanted to give up bloody disease why me why us I never wanted to wake up I felt as if my life had ended I felt like I was 90 yr old . But truly don’t give up you will start feeling better you learn to addapt to it .It took about 6 months to feel better and now 2 yrs later my life it good I will never be how I was but yes it’s better so hang in there you will get there I no at the the time you think no it won’t but trust me we have all had our difficulties sending you a big big hug keep us all up to date stay safe 🥰x
SOM52...... your reply is encouraging to hear...... I’m trying to stay positive and hoping for the day to come where I’m ME?.... you sound really positive and chirpy and yet you’ve been here too, this bloody awful place x
Also piglet I am 66 I imagine you are younger so it must be hard for you if I could make one wish it would be a cure for this horrible thing get back to normality soon 🤞xx
Piglet you are not alone. I no longer recognise the person I have become. I was once an outgoing on the go person whose life was so full. Like you now emotionally and physically drained who doesn’t go out. I have tried numerous drugs going on to my second biologic . I am determined to find that drug that will work for me I need to believe I can get back my life and my personality . I won’t let this disease win. I might have lost a few battles but I WILL WIN THIS WAR. So can you x
I know many wont agree with this but monday I had a picnic ate junk and yesterday had a KFC today I am struggling, every joint is killing and feel so fragile
nomally I eat clean, no sugars and all home cooked foods, veg, sweet potatoes not normal ones
today I will have salmon which will be cooked with no oils, sweet potaotes and carrots and peas and eat lots of blue berries to help bring my inflammation down
sometimes I get away with eating junk but I think I went OTT in one week
A KFC!! With all those chemicals and additives it’s not a great choice 😀. I do like chicken rolled in a bit of flour/breadcrumbs and sumac, and pan fried...just as good.
Hi Piglet007. Just felt I had to reply to send you a virtual hug this morning. Some wonderful advice from everyone already above, but just wanted to add that if the low mood is very unusual for you, as well as seeking some therapy to help you come to terms with what is still a quite recent diagnosis, make sure your Rheumy is aware of the low mood. I know many on here have experienced low mood associated with certain DMARDs, which has resolved once they have stopped taking them, so it can also be a side effect. Hope your pain improves soon. Xx
Dear Piglet, I had many days feeling just like you feel now after being diagnosed. From a very active person to a unable to walk or hold a knife/fork being in constant pain without sufficient sleep. It's fatigue, that all consuming zapping of your energy. It got better, slowly but surely. There is light at the end of the tunnel. I wish I could shine it for you. Stay in touch.
I know they have specially trained volunteers who live with RA. They understand what you are going through and may be able to help you along. Probably the best way to arrange something at the moment is to email - helpline@nras.org.uk because the phone line is very busy still. But by all means try the phone as well. Helpline: 0800 298 7650
Thanks to everyone for this morning messages....they help me so much..... I have just taken a call from my GP who has yesterday’s blood tests and my CRP has doubled in the last month to 35..... why on earth is this not coming down after 11 weeks of therapy. We spoke of my low mood, she agrees I need a bit of help in coping with the pain......
So sorry. You are obviously very down about everything at the moment. I have been in the same position as you, when I thought I would never be free from pain again. It isn't so. Please don't despair, there is something for you that will work. You shouldn't and can't be left in the state you are in just now. You must let someone know how bad you are feeling both physically and mentally. There is something out there for you but you have to keep asking until you get what you need. Ring Rheumatology and your GP today. You need to be treated holistically asap. Best wishes x
I think your last sentence of being treated holistically is key and is so important. x
I had exactly those feelings early on, including feeling I'd rather die straight away than live the way I was. Prednisolone tablets got me over that time. (A jab had done nothing for me.) Who cares if it's only "chemical happiness" that it gives you, or that it takes a long time to taper off it safely? It did the trick, putting me in a better frame of mind and helping with the pain until the methotrexate started doing its job. Don't be scared to take it. Less than two weeks after my rock-bottom phone call, crying to the rheumatology answering machine, I was in charge at an event for 50 people. A month after that I went to France for my niece's wedding. In the darkest days, I couldn't have believed I would do either of those. Altogether I was taking the Pred for 8 months, including a very slow tapering. I've been off it now for over 8 months and I'm only taking 4 MTX tablets weekly. It may or may not go the same way for you, but you are in the hardest time at the moment. Best wishes, x.
Shoulder pain is one of the worse and can be so debilitating. Resting inflamed joints is advised but It is dammed hard to rest shoulders easily or comfortably. in my early days with this disease I suffered with similar pain before my drugs kicked in. I used pillows to prop up my back and support my arm in front to try to minimise movement and pain whilst sleeping. I sometimes used a sling to support my arm during the day to ease strain on my shoulder. If both shoulders are inflamed then these tips may become redundant. I still minimise carrying anything heavy such as grocery shopping bags and hand bags for any distance.
If I managed to rest a joint for 3 days I found the pain would begin to ease albeit only temporarily.
Look to the future with hope there will be a drug or drug combination that will control your inflammation . It takes time as you go through trial and error.
I am so glad you are going to get something to help with the pain now.
also one tip too that might help, keep your bra off, bra straps kill me, so I don't wear one at all now, look at my old threads for these pad bra things. that are great,well they work for me
I've had neck pain and would suggest an Osteopath as they can perform miracles to relieve back, knee and in my case neck pain. It just may be that you have a trapped nerve which needs releasing rather than RA pain in the shoulder. I'd also suggest a bag of frozen peas will help. (I had a displaced ask between 7 and 8th vertabrea and it was so painful the NHS physio did nothing really ).
My doctor became very experimental before he retired and gave me a series of four hypnotherapy sessions for my arm. I thought it was going to be a load of old rope but it did relieve the pain where liquid morphine did not. Maybe a different attack is required?
RAand sadness are happy bedfellows. Don’t give them a room. 💐
I initially felt the same about meditation, thinking any chanting or one 'ohm' and I'm off, but I have got a lot out of it, so think if something helps go with it. Like your last sentence and totally agree.
I’d like to thank you all for the messages of support..... it’s so uplifting to hear from you all and all the tips and warm caring advice is invaluable. I’ve had my shoulders shot at rheumy physio this morning and my consultant has upped my methotrexate from 15mg to 20mg for 3 weeks then 25mg for a further 3 weeks. Not sure how I felt about this but I’ve got to go with it. I’m going to rest totally for a couple of days, to let these shots do their thing. So grateful to you all for listening to me.
So sorry you've got so much pain it does make you feel so low, I'm probably not the best person to advise as I've been on steroids about 40 yrs, but I've had shoulder steroid injecs and also had them in my knees in the past, and it was for me instant relief. I did have a flair last year so they gave me a week's high dose (for me) which helped immensely till they could sort out my
new meds. I know we're all different but the upped steroid dose certainly helped me. I hope you feel better soon, best wishes Sarah 💕
Wow.... 40 years.... so long? I felt well on oral steroids..... of course I understand their potency.... but I’d rather hole up and take care of myself on steroids, relatively pain free than walk around like a miserable 😩 old bag of sore bones. That sounds really irresponsible!?!!!
Yes, time flies 😁 once the pain subsides you feel so much better in yourself , again I can't advise and it's up to health professionals and you of course , but steroids were there for me when I needed them most 😉 hope you get sorted soon 🙏💕
Hang in there . I can truly sympathize. I was really low yesterday too. But we have to keep believing it will improve. I have been waiting a month to start Tocilizumab and was told today my first delivery will be next Thursday. I am taking Hydroxychloroquine Methotrexate injections, Sulphalazine , Celecoxib, and morphine tablets. I have hand splints which seem to be helping a bit, a walking stick to help my feet and knees and a rather unhelpful daughter who only walks the dog under duress. But I am only 55 . I keep on believing it will get better. I think it helps to pace yourself and have regular rest breaks. I now only do the most essential house work and rest regularly. I had to raid my emergency stash of Prednisilone 2 days ago but have had a small improvement today. Maybe plan something nice to look forward to when you feel better even if its just a pedicure. I think that once I accepted my life was changing and I cannot now do what I used to do - it became easier to deal with. I have to factor in rest breaks, say no to a camping trip , and now I try not to think too far ahead. I try to only aim for one task at a time and concentrate on surviving one day at a time. xx
I’m 55 too and was ever so fit and able....bam!.... never take your health for granted? You are on a lot of meds? Surely they work at some point?..... and I’m feeling your bad days.... but I can also see your determination to get well x
Bless you . I had one really good day in the last 3 weeks which gives me hope . Unfortunately it took 4 years and 3 different rheumys before they agreed to mris of my hands feet and ankles inspite of bad spine inflammation so we are shutting the gate after the horse has bolted. But I do believe things will improve for both of us one day xx
Hi P, listen up, do not give up hope, I’ll share my story. Diagnosed with poly RA ( every joint from my toes to my jaw) Eight years ago. I was off work for 17 months in which I was house bound alone for 7 months. Steroid injections should be every 3 months or so, I received twelve in 6 weeks so you can request more due to your chronic pain. I lost three and a half stone as I could not chew my food. Unfortunately triple therapy is mostly given in the first 6 months, 226 tablets per week did nothing for me. Had to get fluid removed from my knees, painful but worth it for the relief. I had laser treatment, hot wax baths, hydro therapy, physio therapy the lot again some relief but never lasted. That’s the bad news.
Now for some positive news.
After 6 months of triple therapy I started mtx injections alongside biologics. Got my appetite back in three weeks and started to feel better straight away although felt some sickness at the beginning of mtx. I did get stronger as time progressed and have been in remission for eight years so don’t you dare give up. I continued with my kenalog (steroid) injections every three months or so during the 17 month absence from work. Was it difficult mentally, yes very difficult. Fatigue is a side effect as your immune system is in over drive hence why immune suppressants are required. I now exercise regular, no issues at work but have my moments like most of us RA sufferers. There is light at the end of the tunnel and you will get there so perseverance is required. Tweak your diet, plenty of what to eat and what not to on-line. Once you get stronger keep yourself moving even though you may think you’ll never be exercising again, you will.
I’m sorry if my message is long winded but As other members have stated we understand so keep fighting. Get some decent pain killers like Tramadol and anti- inflammatory meds. My rheumatologist took me off diclofenic because of the risk to my heart but naproxen did not provide the same relief so I went back on diclofenic which was better for me in relation to pain relief.
I hope this helps you piglet and although easier said than done, keep fighting you will get better and be a stronger person for it.
Good luck and try and get your feet on the floor each morning.
193639..... thanks...am listening..... had shots in shoulders yesterday....not pain free this early morning but a whole lot better. I’m not enjoying this ride but I’ll stay on it and enjoy whatever views I can along the way. Absolutely everyone tells me I can look forward to better times and I’ve never felt myself as unique..... and I’m not gonna start now..... I’m just like you all and will get there just like you all... I have to say the one thing I do feel in my life right now is that to hole up and take care of ‘me’ is top of my agenda and I don’t care if it takes a year..... I’ve got great friends who support me, a great boss who understands what I’m going through....and my wee patterdale terrier who gets me up and out exercising..... your post to me is greatly appreciated and thank you for sharing your story P😊
Oh you do sound brighter this morning. Looking after me I understand . me use to come last once up a time even when first diagnosed but now is a priority . Understand the dog getting you up and walking even if some days are slower than others. I have a greyhound called Darcy. I would love to see a photo of your dog . 😁 hope you continue to have a more positive day.
J1707...I am better this morning and enjoying the ease in my body..I’m not daft, I know my old friend is doing her damage in the background but for now I can’t feel her. I’m not sure how to pop a picture on here using the phone... I’ll work it out. Darcy.... cool name 😊
Just wanted to drop a note to say that salfazine side effect I suffered with was a horribly dark feeling like you are experiencing and nothing like I have ever felt before or since. I stopped taking it with agreement and mood returned to normal. Was a gutter for me as did help
Thanks for this littlemunch..... I definitely think one of the drugs are doing something to my mood, but most definitely the endless pain has lots to do with it. Today has been a much better day.... the shots right into my shoulder joints have given me good relief....so far! 😊 I hope you’ve managed to find an alternative that works for you?
Absolutly typical of RA Just as you start to feel even a tad better it becomes infuriated and punches out even more chronic pain! I think it s so important to share feelings of anguish, despair, sadness.... when you're feeling low because at time when we are at home ( even with family in the same room) it's a lonely journey because no ones understands the misery, loneliness and anguish it causes it causes just as much mental stress as it does physical. And as you conveyed when you're trying your dam hardest to fight it with drugs and to no .....avail! The lethargy is the worst symptom for me too, always feeling ' Is this my life now! Oh God I just can't be bothered with anything or anyone' I'm not surprised our moods become chronic and blue! However, take solice in the fact that having been recently diagnosed it s very early days and try to remain positive that, that drug is out there for you and ready to punch your your RA in the face! I have have RA for18 months now, the first 12 months were not great to be honest trying out the different drugs but not being able to cope with the side effects. But for the last 9 months I've been great on my Biologic however it s just unfortunate that my RA must be quite aggressive as it stopped working., I'm still trying to remain positive though that drug is also waiting to embrace me too! You will get there xx
You are nit on your own, it s literally revolting when newly diagnosed. Went through Xmas in debilitating pain, tiredness was like nothing I had ever experienced, I felt so depressed and cried all the time. I had not had a formal diagnosis at that point just assumptions of what I was experiencing. Unfortunately for me it took one year before I found the treatment that works for me. I wont bore you with the details survive to say, like you, I just wanted to stay in bed and see no one! Once diagnosed it took time for me to accept it I had so many mixed emotions and so angry. It does take time for treatments to work, but seriously you will feel better once your meds kick in and you will eventually get your head around it all. Your life certainly changes you just start to adapt around it but you will get there.
Jax, I’ve read your journey and you sound bubbly, upbeat and well able to defeat the roller coaster this disease has us on. I’m riding the bumps and hoping for a bit of an easier ride when it all clicks into place for me. I’ve thought a lot about my menopause and how I didn’t really challenge how unwell I felt.... I was bagging Munros and I was bloody miserable thinking why does my body ache so much...... that’ll teach me, I should have seen to it. When I finally did get my antiCCP result it was 340......
Hi there, I try to be as positive as I can and try to embrace this disease rather than hate it, but often I do hate it! But I was not so bubbly at the beginning I was very resentful about it invading my life. I literally over read every piece of literature there was on RA and mostly the negative stuff that exploded my thinking which consequently made me very miserable. I just try to live my life with it now as I know it's going nowhere. You are newly diagnosed and it will take time for you to accept it, until you find the right treatment. I do know now that you have to be demostrative about your individual journey with it, no one will know better than you. At the beginning I just listened and didn't have much of an opinion I accepted everything but I don't now I have my say and I am more confident about being vocall! But it takes times. Do not Google negative information on RA I did and it made me paranoid! I thought I was going to die young! You just need to get it in perspective. Just try and rest and believe you will find the right drugs. X
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Severe pain
feeling sorry for myself 😭
Feeling very low..
Feeling sad and disappointed- rheumatologist letter 
Been a while.... nice to see everyone again!
