I can remember first finding this site and one of the overall take aways of advice I had about inflammatory arthritis is you've got to have patience π
Well as per usual you were not wrong.
I feel I am stuck in a perpetual loop, trying and adjusting medication and the very slow wheels of the communication methods of hospital to GP.
This is in no way meant as a dig to medical staff but it would be nice if the hospital and GP lines of conversing were a little more streamline. It seems a tad cruel people have to remain in pain because they are awaiting a letter to their GP from the consultant.
Due to the migraines I had (and shingles, although I'm still not convinced they are shingles but that a different story) my consultant is moving me down to a lower dose of methotrexate, I am a bit apprehensive as the 8 days of migraines really was not the best but it was working wonders on my joints so I'm giving it another bash.
I'm just starting my 4th week without taking methotrexate and I am in alot of pain. I find its a little like childbirth, when you have a DMARD that works the pain and stiffness is a memory but as soon as the DMARD stops and the pains returns the memory's flood back !
I was doing OK moving about alot to keep active but stupidly I have over done things twice this past 2 weeks and I just am having issues with knowing what is too much and when to just stop. First one was vacuuming (Lord knows I hate it with a passion anyway so what WAS I thinking π) and yesterday it was pushing a supermarket trolley around .
I think part of my brain is like the woman from FAME with the stick shouting at the other side "work work" and I overdue things. My husband "told" me to not clean the bathroom which I assure you before arthritis would have me cheering but I felt a bit useless; I understand why he's saying it,I had a massive flare and was in so much pain It upsets and frustrates him he can't do anything to help. I am eternally grateful to him, I do feel like a massive pain in the ass though not that any of my family have said so.
I'm 46 and not being able to do everyday things annoys me alot, I want the system to move the heck up and be faster. But I have been thinking this since May when I first had my initial flare. Sitting around all day is no good for me but having to think about what I can and can't do is driving me a bit bonkers.
Sorry I think I've just come here to vent !
I've also had some issues with my blood results, looks like my kidneys have a trend to not want to comply and then return to normal, im having to go in for my 3rd blood test in 2 weeks to check my creatinine and if still raised have to have a scan. I appreciate the GP being thorough the rhematology department seemed quite laid back about it but its still there rattling around in my head . I would read a book to distract myself but hands can't hold one for too long at the moment .
Thanks for being here to listen, I'm very thankful for the good things I have just needed to talk to people who understand x
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Marionfromhappydays
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Aw you lovely person. I remember ALL those feeling. Feelings of uselessness and behind dependent...my hubby always says he didnt mind.
Calling doctors non stop, ... frustrating but worth persevering , I asked for a named doctor at my gp who had experience of musculo skeletal work, so I always contact them and they know my condition. And are good helping with pain relief
I'm not now afraid to call up rheumy helpline and say can I have a steroid , or can I see a physio
I know my liver is the thing that plays up on me ... I move onto the next thing.
It really is learning to live with it and the hardest thing...acceptance. It can be controlled but doesnt go away. And yes be patient and kind to yourself. Give yourself a break , yes dont clean the bathroom. Learn to delegate as you will have a better day overall.
You will get to a stage treatment helps but for now, use your "spoon theory," be kind to yourself, your body is working hard to make you inflamed so give it a break and relax into this thing !
Oh M this is a mirror image of my journey ( mystery tour really) of RA and still on a winding road ( boy am I full of cliches this morning )
Communication is my gripe. In the day and age of technology why is communication so poor. I mean really .. appointments.. notes taken or dictation ... put on a pile ... wait to be typed.. then posted.. put on another pile ... opened then added to your file... really???? Why not email direct π€π€π€ youβve got me started now M πbeing proactive is a must or your just left until they eventually get to you itβs so exhausting and stressful. System needs an overhaul we really shouldnβt be left to suffer.
Sorry your having a tough ride at the moment.
Iβm like you want to do normal things and not be a burden I still havenβt found the balance x
Absolutely about the communication, I mean it can't be that hard to use email. I bet all staff would prefer email but long standing systems within NHS seem hard to change.
Hope you find the right balance soon, it does test your patience doesn't it x
Gosh that is 8 days with a migraine, that has to be awful and I admit I've had hangovers but not a migraine although my husband does about four or five times a year and then its dark room and until he's sick he is in agony. Even though he gets an aura of cracked ice and has medication its still very debilitating. Here the GP's and hospital for RA are very slow too, but the Renal Hospital in another part of the County is very quick, they use email and so it must be possible for the major trauma hospital to do the same but they just don't. I don't understand why as it'd be cheaper and they do use text to send messages about blood tests and other stuff anyway.
Can you use a pillow to prop up a book and truthfully your husband is right but normal life does resume and everything does seem more difficult for everyone certainly for me its being grounded again and too much time to concentrate on the negative. And so it's about staying positive and trying to find ways around things you can't go over just for a short time. I know you do want to do more and you will but being impatient will make this worse really a flare ( I dislike that word as for me I never get hot joints just swollen and painful ones) can be made a lot worse because the inflammation is aggravated by overusing the joint. So little and often can be the key to helping to reduce the flare and staying mobile. My right hand was always by far the worst affected and I found splints made it worse, although gripping a squeeze ball a few times then resting it did slowly help. I'm not saying that will work for you but trying to do small things to stay active is helpful in the long run. Just pace yourself and please listen to your husband. It could also be perhaps that the suspected Shingles is making things worse and I hope that you have pain medication to help with that. Sometimes RA is a journey that takes time even without the present difficult circumstances and I understand too its not a moan about the clinicians but a sad reflection on how the NHS is coping with the Covid virus.
PS My experience of MTX is minimal but is it known for causing migraine ? s because there are other medications although I'm not sure if a GP can prescribe them.
Thank so much for your reply, I am totally with you about the time to reflect on things can lean towards negative thoughts , its only natural too isn't it; As you said you've got to let them quickly leave your mind and think about the good things, im so glad there are drugs to try, just think if there wasn't!
Migraines truly are terrible, I normally get a few a year which I can sleep off but these were different, real monsters ! I searched this forum and have found a few people who suffered with migraines due to MTX, I guess we all have different levels of tolerance so I'm hoping I cope with the lower dose .
I just realised I have audible on my phone so am going to listen to some books. Hurrah π
It's interesting isn't it how we all have the same disease but our symptoms are so varied, it's not a clear cut disease at all.
Hope you are doing well, really appreciate your reply x
I'm fine got a new kitchen gadget to play with as awaiting a Covid test result it should come today, I'm certain I'm fine, but have Brochectasis and spoke to GP the other day who advised get one and issued antibiotics )as he agreed no fever, no contact it was unlikely but my cough had increased a bit. It is after a cold but he said best to be sure due to the kidney function and actually I think he was erring on extreme caution. I think sometimes its the normal things that break us down into a wreck, for me it was not the RA or AKI or even Shingles it was bashing my car on the front wall last year. I was so upset at a damaged bumper ! and my husband laughed.......
So I'm really glad you can listen to an audio book, I'm a fan of Netflix on a duvet day so many good series and a few comedies which are bizarrely funny. Try to catch Shitts Creek its also on Channel 5 and watch a couple of episodes it is wacky, silly and rather funny in the Father Ted mode. And in desperation I like a bit of Science Fiction too !
I started with Mtx though I had a lot of side effects but not migraine.
I can certainly relate to what your pain is as this is part of RA journey. Mtx took about 6 months to kick in, I was so happy as I could feel the reduced in pain and swell.
Just give the medicines sometimes, yes you need to be patient, once it kicks in, you will have your life back. Right now when you are in pain, just listen to your body and ignore the housework temporary. You can always catch up when you have a good day.
And Grace is a little girl who doesnβt wash her face.
Pre-RA I was a super-speedy hyper-driven workaholic. Email practically implanted in my brain, off to bed at 2am and back out to work by 7, etc etc. These days I live in a state of zen like calm, so you do get there in time. And (apart from the times when Iβm a snappy bitch because Iβm in pain) I think I am probably a nicer person as I have more patience, more time for people, and listen better rather than just rush off and do.
Oh poor you. Itβs awful when you canβt even do the household jobs you hate let alone the things you actually want to do.
As for reading in bed. I have a really thick Poirot omnibus I got for Christmas last year - broke wrist etc so itβs only now Iβve got round to reading it and the other day I told my husband that with my hands as they are now (weak and feeble and a strange shape) and the fact the book is so difficult to hold (itβs really heavy and the pages wonβt stay open for me) that Iβm thinking of hacking the book into manageable pieces.
It means I wonβt be able to pass it on after Iβve read it but at least Iβll be able to read it.
I really feel for all you young people who are suffering. Itβs not great for us older folk but at least Iβve had a lot of great years up until now. So good wishes to you and hopefully things will improve.
Well its not quite taken you a year to read the book so thats not bad π
Thats a shame to break the book up but if needs must, its so nice to get into a good book I think I would break it up too if thats the only way I could read it.
This disease sucks at any age doesn't it, most Important bit is for it not to make people melancholy isn't it.
Have a nice weekend (well best you can in lockdown x)
Ah, Iβve only just found it on the bookcase - I was ill over Christmas so I never really saw my Christmas presents, you know when you feel so bad you canβt bear to look at anything? Then a few days after I got up I broke both bones in my wrist which was a bit of a shock and unfortunately there have been a few hiccups on the road to recovery. So Iβm only really getting back to somewhere near normal.
Annoyingly a lot of my gifts were to do with hobbies that needed two good hands - I got a lovely calligraphy pen kit and even signed up to a calligraphy class at an art store nearby, had to cancel that, then we went into lockdown, Iβve only just mastered writing with that hand - until recently when Iβve had to sign for anything Iβve been reduced to an X like scribble.
I was given a kit to do Lino printing but thatβs been a no, no too - maybe I could give the gifts back to the family members I got them from and they could wrap and give me again.
So itβs a thick book of short stories - think it must be every single Poirot story Agatha Christie ever wrote so itβs not going to be like dissecting a novel.
Nope, you canβt make people melancholy can you. Even sympathetic people like my other half donβt really understand how grim you can feel on a daily basis so I donβt bother telling them now.
Weβve had a lovely day, nice long walk over the now empty golf course across the road. Good to have it back again - it was a bit of a shock for all of us walkers when lockdown ended and the golfers took their course back.
Oh I totally recognise all of these feelings! Iβm 43 and still messing about with medications trying to find the right solution. I have gone through a lot of feeling guilty about things like not being able to do as much around the house, but I have realised that it is more important to me (and to them!) that I prioritise being able to do things with/for the kids so I have forced myself to let some of this guilt (and some of my house proudness!) go. Also over the last couple of years I think hubby and I have learnt to rebalance who takes care of what between us, so for instance I have taken over more of taking care of the finances, I sort all his families birthday presents, do the kids homework with them etc as these are all things I can do without needing to be mobile if that makes sense. Also if I am having a bad flare, I try to keep the βI am worthlessβ feelings at bay by finding something useful to focus on whilst stuck on the sofa, so for instance last week when my knees were not cooperating, I decided to make a start on the Christmas shopping online.
As others have said itβs all part of adapting and accepting, but donβt beat yourself up about having these feelings either, I think we all still struggle with them at times. Xx
Sorry to read you are still having issues with medication years into diagnosis, I think by the sounds of it anyone who gets the correct medication for them at first bash is mega lucky
Yes delegation is the way forward, im just hoping when I girls on a DMARD I "come back" x
Oh Marion my heart really goes out to you with the current position you are in with waiting for communication between your rheumy team and GP catch up with one another.
All the blood tests are going to be weighing on your mind too understandably so.
I have read that you received your copy of you letter from your rheumatologist today so hopefully it will be there at your GP surgery ready to action on Monday. Will you be able to have the lower dose of MTX prescribed now with the arrival of the letter or is it waiting for the next lot of blood tests too?
It really is a bumpy ride sometimes with this RA. My liver and red blood cells seem to be playing up a little as last two lots of tests come back with some abnormal results. I got a text at 6:30 from GP surgery asking me to make a non urgent telephone appointment with the GP to discuss them. I am fortunate to have a telephone appointment with my rheumatologist for the 16th November too. I am doing my very best to control my negative thoughts going round in my head about whether it will mean more tweaks to meds. It would be so nice to have a few weeks with no changes to meds and a good set of blood tests. I am so fortunate to still be on meds though so feel guilty for feeling sorry for myself.
Thinking of you and really hoping that this next week ahead brings some much needed relief for you. xx
I totally understand what you are feeling about the blood tests etc, it does play on your mind; Its not only the physical aspect but it's arranging the appointment with the nurses, Dr's etc. Especially in these times when they are stretched it's hard to get an appointment and you have to ring up and kind of put your argument as to why you need a test etc.
I hope your liver and full blood count results return to normal soon,it is good the GPs are looking after us (although I did ask some questions about of it was my arthritis causing kidney problems and she didn't know, but I apprecaited being told she didn't know rather than her trying to mumble through it).
I have a blood test Monday so hopefully should be good to go next weekend with the MTX, just hoping the migraines don't come back. So glad I got my letter today though, moving forward.
How many injections have you done on your own now ? Do you find them better than the tablets ?
I'm really grateful for this forum, strength in numbers x
I really do hope your blood tests come back okay and you can start your MTX again. I really do hope that no more migraines and this is the way forward for you. I really do as you have had a tough time.
It really is a full time job trying to get appointments etc as staff are so stretched. I am so appreciative of all my health care teams are doing for me although there are days I wish I could run away from it all.
I shall see what my GP and rheumatologist say about my blood tests. I am certain it is nothing of concern as they would have already acted. It is just the constant uncertainty that still affects me emotionally. On Monday next week I will be on week four of injection and it will be my third one that I have done without the nurse. I certainly am having less side effects with the injections than when I was on the tablets. Keeping everything crossed for you next week. xx
Sometimes RD can feel a bit like wandering through a maze and coming to a dead end, whereby as we enter in further it becomes disorientating, too much, you feel lost and overwhelmed and have to stop have a moment, take a deep breath and think ok may be it's not this way but there is a another way and then begin move in another direction. For some finding their way may be easier than others. I think in my experience with respect to health professionals you can have some who will be proactive and want to make a difference to your health and well being and there are others who for whatever reason sit in their corner, can be judgemental and only 'deal with the condition/ illness/ disease' and see you as just that and don't communicate with you or others involved as a holistic approach. So the dots are not always joined and working in partnership with you and others looking after you becomes fragmented and clear, effective communication and sharing of information can go awry or has the potential to there be misinterpretation and things get lost along the way, which has the capacity to affect us and cause frustration and despair. Again on our part acceptance and adapting is key, but also allowing ourselves to have moments when overwhelmed, in pain, struggling, are emotional to acknowledge this too and not be afraid to admit it or seek a release, help. a distraction or way of coping/managing, to talk or share this, delegate (if possible), rest and be kind to ourselves. Again on the good days and for some who are lucky this may be most (or may be all) days, for those who are suffering may be not so much to acknowledge and make the most of these days and enjoy this precious time and live in the moment. We didn't chose this journey and it is good to be able to vent and is more healthier than bottling it up or becomming overwhelmed with it all. Take care, love Pip xx
Sorry to hear that you're struggling atm and I really understand how you're feeling π
I remember struggling to peg clothes onto the line when I was first diagnosed and really hating it when I had to let hubby do it for me; quite apart from anything else he doesn't get the concept of shaking the clothes out so they end up coming off the line more creased than they go on but obviously, I didn't feel that I could point that out! ππ
During the first lockdown my RA was getting worse and I found that I needed to spend a lot of time with my feet up. I also found it hard to hold a book for long but could balance the tab quite easily so started using that to read the free Prime Kindle books and magazines - Hubby had a Kindle but I could access the account. He then suggested that I have his Kindle (and he got a new one!) so I started using that to read in bed at night and again, it was easier to hold - especially as the screen is back-lit so I can rest it on the quilt and still see it clearly. I also started accessing our newspaper online (we have a subscription so get the paper delivered and free online access) and did my puzzles on the tab which was easier than gripping a biro. There are plenty of funny YouTube videos to watch too which can make a change from sitting in front of the TV π
This is just my way of pointing out that you're not alone in your frustration but also that there's nothing wrong with finding ways to relax and keep your mind off those natural worries. The time will come when you find the right medication regime, your energy levels will return and your pain will decrease but until then try to be kind to yourself; cut yourself some slack and try to remember that giving your body a chance to rest will help it to beat this ****** disease in the long run πͺ
It's all been said in the replies above, for what it is worth, yes I recognise the going round in never ending circles and a feeling of not moving on. I am a more patient person than pre RA days, there is always a positive !
Virtual hugs and understanding. That's all, otherwise I will start going on...I feel pretty much the same and today in addition to my back was the first time I have what I am learning are classic symptoms. It was a struggle to hold knife and fork. Hands and wrists feel horrible.
Undiagnosed/untreated for 7 months, 15 Mgs prednisolone a day for past 3 weeks (should have reduced to 10 mgs after 1 week and 5 the following week but symptoms increased so back up to 15) still not controlled after such a short time.
Will be speaking to Rheumatologist next week, hope I donβt have to increase because I am getting unpleasant side effects.
Hugs Marion. I've been feeling a bit that way myself this week, I think my last steroid jab has worn off so all the pain, swelling and stiffness has returned with a vengeance. I'm a year into diagnosis and on Methotrexate and hydroxy with some small success, the heat has gone out of any swelling and have tried sulpha and Amgevita both of which made me ill. I'm starting on Benepali soon though so feeling optimistic. I'm a single parent so the house never looks great but I'm hoping to get a cleaner when this virus finally eases, could that be an option for you? Less stress and guilt π
I really hope the benepali kicks your symptoms, so glad your Dr's are looking after you.
Getting a cleaner sounds amazing although I can imagine wanting to clean up before cleaner got here π i am by no means house proud, I'm just so untidy!
Thanks Marion. Do tell your rheumatoid team if you keep flaring though as they might give you some steroids to tide you over. Hope today is a better day for you x
Sorry to learn of your troubles and I can only say, we all feel for you on this awful journey.
But as for reading and holding a book, I bought a purpose made padded book rest. Works a treat. My daughter calls it my βmagicians hatβ. Have a look online. Happy reading
I understand everything you are saying. It sounds like me several years ago. It does certainly make you feel better to vent and sadly it is the only thing we can help you with. Patience and pain don't come hand in hand and I defy anyone who says they have just accepted the pain and gone with the flow. Accepting the condition is not the same as accepting the pain. I hope you get some respite soon, until then keep posting and venting.
You've had lots of good replies, so I just want to add something about the housework. Firstly, I don't imagine many men feel terrible if they just can't manage to do it. I don't mean that judgementally; I mean they can more easily put it to one side, as in "If I'm not up to it, it will have to go undone". Secondly I heard or read ages ago; Nobody lies on their deathbed thinking 'I wish I'd done more housework in my life'.
Another thought: how about getting some audiobooks?
I do hope things get better for you soon. In the meantime get as much pleasure as you can. The house will survive.
Absolutely agree, i always believe housework is a split and I would never be wishing I had done more π You know what it's like with RA I don't want it to dictate to me what I can do so actually wanted to clean !!
I'm not on medication at the moment so need to learn to take it easier.
I have audible, just downloaded some books so am off and running x
I think a while ago you asked a about things to take your mind off it all and I can't remember if I replied but I'm addicted to podcasts from BBC radio a d the Guardian do them too. I download onto my Walkman mp3 , it sort of curls around the ears, or listen on my phone (tucked into my bra strap!)
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Two full days and then D-Day
warmer days and lazing in the garden
Changing the day for MTS
