Anyone else had anything like the following at all please?
I was diagnosed last June, When I was prescribed steroids to tie me over. Finally got started on medication the start of October. I have been on MTX injections (this has been increased to 20mg) hydroxy and continue the steroids although I am tapering.
My blood work has been up down since I was diagnosed always slightly elevated above ‘norm’ but sometimes better than others. Some of the swelling as subsided, however there are specific joints that cause problems continuously and the weariness and deep aching in my body is relentless. I have odd lumps (Hands and wrists) and deformed looking knuckles which are constant now not just a bad day.
They have performed urgent ultrasounds on my problematic joints and it has revealed very little apparently and there is nothing unusual. Why do I hurt so much still if the ultrasound doesn’t show anything? I feel like I’m going mad and I’m being made to feel that way too. They’ve said that my blood work isn’t as high (last bloods were a month ago) as it was at the start so I should be feeling better but that is quite the opposite.
I cried a lot yesterday, I feel completely defeated. I attempted to walk for about 5 minutes and my knee gave way and I’ve fallen and now what I consider my good/better knee is all scraped and bruised! I was asleep at 4.30pm in the afternoon... I’m 35... is this really it? I’m fed up of tablets, injections, being poked and prodded all the while and being told how I am feeling when it’s not a reflection of what I feel in my body.
Sorry for being so fed up, I just don’t know where to turn or the next step from here as my rheumy team seem content that I’m okay but I’m not and I don’t know why. I desperately want to feel more human, I have children and a job I want to get back to. They’ve eluded to something else, another issue or condition possibly contributing to how I’m feeling but aren’t giving me any more information or exploring that so I’m none the wiser.
Anyone who has had similar experience, I would be so grateful to hear where your RA journey took you next.
Thank you xx
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Rolo85
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Your post brings back the horror of my first year! Poor you, it can be truly awful. But for the vast majority of us with perseverance you find the right treatment and life returns to normal. So please don’t despair. It may feel endless, but 9 months in RA world is not that long.
First suggestion is to get to know your own blood tests. Ask for them via GP or hospital (you are entitled) and keep a note. I was given a monitoring book when I first started on MTX which was very helpful. Here:
Over time you will learn what is normal for you and be able to challenge the doctors. You need to know what your tests were at the start and how they have changed.
The second thing is make sure your medical team knows exactly how this is impacting on your life. Often in appointments there isn’t the time to discuss everything, or being polite you make less of a fuss than you really should. “How are you today.” “Not brilliant doctor, my wrists are still hurting” which to you means it’s awful and my wrists are excruciating, can be heard by the doctor as “everything’s fine just a slight ache in my wrists”.
You could write a bullet point list of your main issues and send it to the consultant, and have similar with you for you next appointment. You need to make it crystal clear that this is not how you want to live your life, and you would like suggestions for treatment changes as you believe the pain is due to the RA.
The third suggestion which will be hard for you with children, is to really focus on looking after yourself if you don’t already. Obviously you’re feeling exhausted if falling asleep early afternoon, but are you taking any exercise? Sounds counter-intuitive but making time for daily stretching exercises, a bit of cardio and so on helps your body regulate itself and keeps your muscles supple. And eat properly - lots fresh veg and fish and limit fatty & sugary stuff.
It is awful, but keep pestering your doctors and believe that it will get better! Good luck,
Ditto from me. I’m in a similar position though my rheumy is working on other treatments for me.🤞🏻I have a computer file with all my blood tests (my gp organised the bloods and emails them to me (no point asking the nurses/receptionists... only your gp/docs can authorise this) and I make sure when they do my bloods all things that are problematic for me are monitored... ferritin b12 esr or crp and other things are often missed off the form. Good luck and don’t let up telling them how awful painful and difficult it is and what you can’t do. Tell your gp as well. Don’t hold back. You need to spell out the reality to them. 🍀🤗 be kind to yourself. We will get there. X
Hi Rolo, my pain is not as bad as yours, it's up and down with occasional extreme episodes, but otherwise sounds familiar. However, I really feel for you and understand your frustration with not being listened to I won't go into details about my issues, they're ongoing and I have an appointment with consultant on 2March after a year if no follow up since diagnosis - but it does sound as though the medication is doing "something " , not much comfort, I know but they might add another medication if you stand firm (or not, sorry, couldn't resist) and make them understand how you feel physically. Involve your GP too, perhaps he/she could contact them to emphasise how you feel and back you up a bit. Good luck x
There’s many off us who struggle. The impossible puzzle that is RA for some . We don’t fit the boxes so it’s so much harder to find what works. Deeb has it spot on xx
Ok firstly you are no alone on this feeling of sticking head on table and crying! I am not going to pretend the first 2 years since diagnosis have been fun in any way shape or form. However writing your post will see you are not alone and then working out with your RA team and GP on how to get to a better quality of life.I am super sensitive to drugs so I am a challenge for GP and RA clinic so surviving on co codamol and pred after the biologic kicked me in the butt.
So keep a diary keep pestering and hang on in there but also patience and REST are needed RA hates busy bees in the stages of getting drugs to work. I hated hearing that but it is true.
And another similar experience here of feeling just so unwell and the medics not listening in the early days of RD...but things do get better.My one suggestion is to keep a daily journal of how you are feeling. I recorded my sleep (eg. poor, ok, good) medication, general well being ( eg. achy and sore) , joints (eg swollen ankles), activity and graded my day A, B, C, D.
I took the journal to my rheumatolgy appointments along with a one page summary sheet that I asked the rheumatologist to submit to my notes, my care improved greatly and I felt listened too as there was no ambiguity in what I was reporting.
Don't be afraid to ask questions either, be direct ...' what are my options?' , ' what does that mean ?' , ' can you explain? '
I found the only way round the feeling of being so unwell was to rest, difficult when you have responsibilities and everyone is telling you to move, but it just didn't work for me. Do what you need then sit or lie down, don't be afraid to ask for help. It will get better, but often you do need to keep at the rheumatology team, reminding them things are not so good.
Hi Mmrr - I have written everything down and relayed this as accurately as possible to the nurse but I really get the impression that she is eye rolling at the other end of the phone. She can be very dismissive and I don't think she likes listening to my long convoluted descriptions. I am however writing everything down with dates for the appointment next week.
I regularly used one A4 bullet pointed page of things I wanted rheumatology to know and asked for it to be scanned into my notes, I then phoned a few weeks later to ensure that it had. Under a freedom of information request I got a copy of all my rheumatology notes and commented on omissions etc.I looked everyone directly in the eye when we use to have f2f appointments and asked direct, but polite questions.
I have no issues now and feel I'm taken seriously, I manage my appointments and make sure I am heard. Difficult to begin with, but my rheumatologist did comment last year that she likes my bullet pointed notes, it makes my appointment efficient.
It is fine to say (politely) I am not feeling listened too.
yes - I need to be more assertive. I seem to be able to tell everyone else to be more assertive but not so great at being so myself 🙄
I’m 37, diagnosed with inflammatory arthritis (most likely psoriatic) last Jan, and still very much in the mire with rheum unwilling to listen and not bothered by the worsening permanent deformity or continuing stiffness, pain, and transient swelling. It’s not helped by the fact that many people with PsA have totally normal bloods, even during a flare, and that criteria for the next stage of treatment is based on having at least 3 visibly swollen joints 🤷♂️ I live in hope that the replies you’ve had and that I routinely see for others eventually hold true for me, too, but have to some extent given up over the last month or so, albeit temporarily: I’m a single dad and full time carer to a 13 yo with complex needs, and I just don’t currently have the energy to fight rheum when I’m also fighting with social services and other specialists on her behalf.
This isn’t my first or only chronic condition, so I learnt a number of years ago that resting is vital, and therefore find pacing myself comes automatically, but pacing yourself and resting is absolutely key. The more you try to push through, the worse you will feel. It’s even more important if, like me, you have no one else you can call on to take any of the pressure off with chores, cooking, or childcare. My standard of housekeeping these days is ‘if social services came in here now, would they have a problem?’: as long as the answer is no, the rest has to wait until I’m physically up to it. If you do have people to support you, though, use them and ask for help, even if it’s just for small things. I’d also very strongly advocate gentle exercise where you can, and eating healthily.
Hi Rolo, so sorry to hear you are not doing well, apart from all the advice from the lovely community below if you want to talk to someone we can match you to one of our lovely trained telephone support volunteers you can request a call via our website here nras.org.uk/resource/here-f... Please do give it a go, all our volunteers have RA themselves and you can talk through things with them.
I feel for you and ultimately in part it's so difficult in these pandemic days. But do not loose hope RA has many effective medications and I've been in remission apart from the odd blip for years. I do have some other health problems but the RA isn't really an issue. It does take time but you will feel better and life will return to normal with the assistance of medications. Sad that RA has no cure but it is treatable and so don't loose heart and remember that the NRAS has some very good information and once the pandemic is over and more F2F appointments happen things will improve. It is important to be patient and also to rest when you need too as well. I've had RA for many years and also when the RA is not under control swollen knuckles so would suggest that you photograph them and see if your healthcare professional will look at your hands. RA is a marathon and unfortunately not a sprint and it does take months for some meds to work. xx
I’m 48, diagnosed sep 2020, at that time RA had only effected my hands (toknowledge) began methotrexate injections immediately, now on 20mg. I to regularly feel mentally and physically overwhelmed. Since beginning injections I’ve experienced severe pain and weakness in every joint in my body..but now everything has settled down.
Methotrexate can cause your Ra to feel worse until your body gets used to this drug. Also most diagnosis are made during an RA flare up when we are feeling our worst and most likely to seek help.
Feeling depressed is a normal reaction when told you have RA .
Stay healthy, give the meds a chance to get a grip of your body, and give your body a chance to get a grip on your meds. I also don’t have much confidence in my GP, and we all need to trust that we are being heard and understood.
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