I'm 1.5 yr into my RA journey. I went downhill very quickly and was pretty much bedbound in a month. I had to reduce work from full time to 2 days per week. Slowly I've been getting better with treatment but it really is a slow process. I'm on MTX and Sulphasalazine and on good days probably about 70% more mobile/active than at my worst. I have been to physio and following their advice, felt a little more confident. I've been hiking and pushing it a little and while it takes determination to keep going, I haven't got worse afterwards. Mentally this has put me in a better place. After a few days by the sea I was feeling on top of the world and went to see the rheumatology consultant. I've had hand ultrasound and only osteoarthritis seen which I think was taken as not having active RA. So in the consultation, I was saying that things are looking up, I'm starting to feel much better and pretty much ignoring the pain that I do have. Of course, the consultant said 'great, I'll see you in a year's time, no need to change meds' and off I popped a tiny bit concerned that I'd not used the consultation effectively but overall upbeat. The same day as the consultation, I said to work that I could go from 3 to 4 day week. The following day, I'm not working so have big plans to get to grips with cleaning tasks...then it's like a wave hits me. I'm not feeling as well as I had told myself I was. I feel exhausted and my arms just won't lift things I have to lie down and the last couple of days have been similar. Once again things feel a little bleak but as far as my consultant is concerned all is rosy. Not sure of the point of this post - I guess I'm just venting to people that will understand.
Day after regrets: I'm 1.5 yr into my RA journey. I... - NRAS
Day after regrets
Certainly do understand. This is so often a three steps forward, four steps back disease which just keeps shouting, ‘mummy, mummy, don’t go without me’!!
I hate it, have done for over 30 years and still can’t get it that it clobbers me just when I think I’m on a roll. And there’s the rub - you feel better, you overdo it by a margin and it’s back, shouting in triumph as it’s knocked you down again!😡Everybody who has it will know how that feels, we’ve all had comfort and support on here and that matters hugely cos no other b……r outside of this forum can really understand what we all go through day in and day out. If you have a long run of good health due to good treatment it’s the most massive bonus but sadly it doesn’t happen that often.
Keep persevering - being determined it won’t beat you is psychologically the best medicine!
So well written.
Thank you for understanding. It's taken me a long time to get my head around the fact that this is the long haul ...and perhaps there is still some denial. Especially when you hear that so and so was diagnosed and once they got on the right meds they were back to normal again.
You live & learn.I was always thinking I was superwoman when I was first diagnosed & thinking I was settled on what I thought was my “Drug for Life”…& thinking things could only get better! Dah?
I think the magic mantra is acceptance. …..not constantly looking back always hankering over what used to be & not switching drugs too often. There is a good life to be had…pre Covid I was still travelling all over ….well in to my 70’s…not overdoing things but enjoying my life.
But we have all found a change since Covid……
Rheumatologists are not magicians …most really do their best & we often think that is not good enough…but I found if I listened to advice …things did eventually settle down…but fighting against well intentioned treatment - always thinking you need something better only causes aggravation.So all we can do is to live the best we can & try to be happy.
That's it - I hopefully will learn🙂. I'm not blaming my consultant at all here. He gave me the opportunity to speak and I could have pointed out difficulties that I'm still having, but on the day they just seemed manageable and not worth going over. He can only go on the feedback that I give. You're right too, he's not got a magic wand so even if I had spoken more candidly, I'm not sure at this stage what he could have done about it.
I’m way down the line & I still don’t get it right 100% of the time.I think I now appreciate the good times & am grateful that I’m lucky enough to have accepted que será será…..& have a good old strop 😩if I don’t feel well enough to do what I want to do.
I don’t know where this comes from…..sounds American…..but it sounds sense!
“With many forms of arthritis, ‘motion is lotion,’ meaning that some form of physical activity and exercise is beneficial,” People with arthritis who exercise regularly have better daily functioning, more energy, and less pain.
A sedentary lifestyle can harm your health in many ways, from increasing your risk for heart disease to further damaging your joints. “A lack of muscle strength can mean a lack of joint protection”. Exercise and physical activity also seem to have some anti-inflammatory effects that may have benefits for people with RA.”
You don’t need to run a marathon to reap the benefits of exercise. “Low-impact aerobicexercises incorporating some strength training, joint protection principles, and stretching for flexibility are most optimal for people with RA,”
This is similar to the advice I got from the physio and upping activity (within reason) does seem to help. I think that perhaps part of the issue is I’m at my desk for hours for work and forget to move. Than I’m seized up when I do try to move.
I’m so ancient now I’m amazed I can still stand up….but pre RA I was quite active sports wise …..initially after diagnosis I did what I guess every one does …...turned on the hot pad & cuddled the bits that hurt …..but that didn’t seem to work so I slowly forced myself to stretch those bits & found it did relieve pain.
I still stretch out before I get out of bed every morning & really feel the difference if for some reason I don’t do it. It might not work for everyone…but unless your doctor tells you not to …it’s worth a try.
I know exactly what it feels like, to see the Rheumatologist on a "good" day - I usually feel a sense of elation when I'm feeling pain free and flexible, so I'm keen to share the good news! However, more often than not, those good days are followed by a few not so good days, as I invariably enjoy my feeling of elation and relative surge in energy a bit too much... I now keep a simple diary between Rheumatologist appointments so I can report to him about the whole period, not just how I'm feeling on the day. It really helps me to give a more accurate picture, so they don't jump to conclusions that I'm doing better than I actually am. With that in mind, I have also learnt that the bad days do pass and there will be plenty of good days to enjoy - in moderation! Best of luck x
You vent I know I have been there And got the badge 🥰
That word pace that a lot of us don’t get is key but……
but.....I feel so guilty if I 'could' do something but don't because I will be worse later. I feel like I'm a drag on the people around me.
When I go hell for leather to do something my hubby looks at me and says there will be payback. He tries hard not to say I told you so! There’s no win
Go at your own pace…real friends understand…they know you are trying your best…& that is all you can do. These days our meds might need perseverance but if you give them a chance- on the whole they work ..but not if you insist on chopping & changing because someone you hear of does better on XYZ,
You sound as if you are heading in the right direction….at the right pace.
The only certainty living with RA is the uncertainty and that's what makes it so difficult.
This is a new one for me because until recently it has all be slow progression in the right direction. Very slow but always in the same direction (apart from the declines after a course of steroids but I expected that). I will remember that phrase from now on so that I'm not taken be surprise again!
worth putting your rheumy in the (new) picture? X
I will see how things go over the next few weeks and call the nurse if I feel like it's more than a hiccup.
Yep that sounds like the unpredictability of RA . Its like as if its listening into your thoughts and words! As soon as you think you are starting to feel better, it all changes! So very sorry you are hsving a rough time. Phone your RA nurse or see an empathetic Gp?? Any NRAS support groups in your area? Its good to vent , particularly to RA sufferers.
Awww we are all the same. I literally had my appointMeant the other week and said I’m feeling the best I have in a very long time. Touched the wood desk and said I’ve probably sxuppered that now lol.
Here we are a couple of weeks on and because I let myself think everything was good and I was ‘getting better’ I’ve pushed myself too much and back feeling not so great again and very tired
It’s disappointing but I guess the learning curve has to be handled
I felt good and positive telling the consultant I felt better as I actually realised I did
Keep fighting x stay positive x rant away because someone is feeling exactly the same as yiu x
Hopefully the consultants understand the disease well enough to know this is a common problem. I think that's the worst of it really, if we go in all confident, saying it's all under control, are the consultants thinking 'well they (the patient) are in for a shock come next week when they are feeling worse again' or do they happily think 'that's another RA patient "cured". My job here is done'.
I never know what remission looks like darling. I have good days and then bad days each is never the same. Take Saturday for example i was the photographer at my friends wedding. I was great during the service and outside the church, then come the reception i just crashed and my hubby had to bring me back to the hotel we are staying in. Since then we have had days out i and i have not been too bad, exhausted yes, but nothing like Saturday.xxx
Oh I know how you feel. I have recently been discharged from rheumatology back to GP. This was mutually agreed upon as I've had bad reactions to many drugs and don't (at this time) want to try more. Given the long waiting lists for people it didn’t seem right to hang on to a space someone else could use. They might afterall benefit greatly from drugs offered. Of course, apart from drugs, there isn't much else on offer from NHS for me personally. I can have a steroid shot once a year, and will be referred back to rheumatology should the proverbial hit the fan. Given it took well over 2 years of pushing on my part to get referred in the first place I can be forgiven, I think, for not holding my breath on that one!
I'm in less pain than I was years ago, but I still have pain and I'm wiped out easily. I have taken up swimming and various supplements. Apparently there is no sign of swelling of joints. My joints were not examined! My neutrophils were high apparently also. Thoughts were that this was down to meds. Who knows! So I understand how you feel. Sincerely. In my case I'm sort of accepting that from a pharmaceutical point there's not much more to be done...at least for now.
I am the same. Although the rheumy didn't discharge me, she just said come back in a year. She decided after examining my hands that I don't have enough inflamed joints to justify trying any other drugs (I can't take NSAIDs, had adverse reaction to sulphasalazine, MTX seemed to help but after 5 months stopped working and made me feel worse). No recognition that my hips and back hurt more than my hands, but hey ho, they know best LOL!
I watched my grandfather struggle with RA all of my life, and he was extremely disabled by it by the time he died in his late 70s. Also watched my grandmother struggle with her arthritis so she suffered until she was 96. I had hoped that medicine had moved on and I wouldn't have to have those same struggles but it seems not.
Luckily I am a full-time unpaid carer for my disabled son, so I haven't had to give up work as such, but I don't think I could ever work again. Just walking the 55metres down the drive to open the gate for grocery delivery has set things off!
But I am content with my lot in life. I like many others who don't have any medication don't have much other choice.
Sorry to hear you too have struggled with medicine. Unfortunately (for many) they are not the magic wand we hoped for. That said, I've been really grateful for the steroid shots. These did indeed help with horrendous pain. I'm certainly better than I was, and can only hope I won't get worse. I'm OK with finding alternatives for the time being. Sometimes acceptance is the best thing for moving forwards...for some of us! Yesterday was an awful day. Today I'm going swimming!
Wishing you well in your journey. Everyone else too. ☺️
When you found that MTX was no longer working were you on an oral or injectable dose. I was not really getting much better on oral MTX but the injectable seems to give that extra boost that I need to at least feel human.
I was already on the lowest dose of injections. But it was giving me terrible abdominal pain four days after each injection.
So not only was I having side effects on the lowest dose, it was also not working as joint pain got worse. Rhuemy's solution was to put me on an even lower dose. I pointed out that I was already on the lowest dose, and it didn't seem to be working so how would going to a lower dose that doesn't even exist work? She said she would make enquires.
Two months later she wrote to me saying I wasn't eligible for any other mediation and then a PS that they didn't do a lower dose of MTX. 🤷♀️
Yeah, maybe if I had a second opinion things might be different, but this is already the second opinion, so I think the whole of this rheumatology department may need some better training!
Is the pain related to the injection site or is it to do with your digestive system? I have been very fortunate regarding the side effects of drugs so far. It must be a distressing when the drug that works for you starts acting up or stops working.
it was my digestive system. My body doesn't seem to like very many drugs!
It's a shame that rheumatology couldn't keep you on their books for a direct call to the nurse should you get a nasty flare so that you don't have to get back into the system again.
Yes it's a pity. There's a huge waiting list of people who haven't been seen at all. I'm OK with the decision. I'm not in the same position I was years ago. I'll try keep fingers crossed.
I’m not on medication either , but I’m frightened to be removed from their list as I’m sure I wouldn’t get a steroid injection when I needed it , or access to the occupational therapy that I’ve found so useful , without it. I’ve actually felt a bit threatened when one nurse said if I didn’t try the next drug I’d be removed from their list ! It shocked and horrified me ! Are drugs the only thing they want to offer? Fortunately I managed to speak to the consultant who assured me he’d keep me on the list for the time being .
Yes I understand your fear. I'm not thrilled but apart from meds there isn't anything else on offer. I've tried 7 drugs. It's enough. I'm also a great deal better than I was to be fair. I remember the fear and agony of not understanding what was going on. I've been seen, tried various treatments, I'm OK with trying something else for now.
It sounds as if you were so pleased to be feeling better you bit off more than you could chew and crashed. I think that’s pretty normal behaviour. I know I do it all the time and rarely learn.
Getting your head straight is a major part of the battle I think and then as they say, getting out of your own way. And that’s not easy and you seem to have cracked that. Pacing, perhaps not so much 😊
I always thought I was superwoman and life would continue as it always had and I’d make it so. Almost killed myself in the process and had a few counselling sessions as I was in complete denial.
It’s not always easy to give yourself a bit of slack, but sometimes that’s what it takes. Have a few days of doing not much of nothing and you’ll be ready to ride the next wave. You’ve got this 💪🏽💪🏽💪🏽💕💕
Ah yes, superwoman syndrome! I am that person. Life has piled more and more on my shoulders and I was proud that I had the grit and physical health to carry it all...until RA. I think that's so true for a lot of us and perhaps is a contributing factor in our susceptibility to the disease. I've had to come to terms with the feeling of losing who I was. The sense of getting it back brought elation and elation brought unrealistic expectations. Having vented here though, I do feel like I'm getting my head in the right place again though.
And it's probably going to happen again. It is an adjustment, no doubt.
Interesting your comment about women taking more and more on as my doc thinks it's triggered by stress so may be more than a grain of truth in that.
I'm sure stress was a major factor for me. I was reeling from one thing to another for a couple of years before RA struck.
It looks like there's a link doesn’t it.
Have you an advice line you can contact? If you continue to feel bad then contact them. They are used to people saying they are fine and then regretting it! We've all been there. Keep moving gently and often. Rest and distract yourself with pleasant things like music and scenery. I watch the birds when I'm having a bad patch.
Hope it settles back down to manageable.
Thanks Oldtimer, I am feeling a little better after some rest and all the kind words and shared experiences here. It's likely that the weather change is also a factor. I'm feeling the cold now which doesn't help. Fortunately, I have a good rheumy nurse service and can contact them if I feel the need for medical intervention. I'm also free to call physio for advice if I need it, so I can't say I'm not being looked after. I will give it a few days and call if things decline further but be a little more careful in my exercise in the meantime.
you’re pushing yourself too hard. You’ll be able to do a lot more, but you have to pace yourself. Tissues take time to heal.
vent away. I totally understand. I had my arthritis very well under control up until about a year ago. My Biologic doesn’t work anymore and I have begun to feel depressed to often wasting beautiful days outside which compounds the depression. On top of it I have ADD and my meds for that are not as effective so concentration is difficult to say the least. I have a daughter in college first year and another in high school that travels weekends for bowling tournaments plus I still work full time so little time for myself. My wife has her health issues also but we manage. It is so key to have family and or friends that understand. It’s the typical you look fine why can’t you do everything everyone else does. Sure I can lift a 100lb object and do laborious jobs but most of the time I will pay for it almost immediately or the next day. I have wasted Dr. Appointments a plenty always thinking of something I wanted to ask later. Do you have a pain management Doctor? It’s so important to stop the fear that taking pills to help you function is okay. The stigma was awful at first but now most people understand plus I flat out tell people now about my health so they don’t have to whisper why I look okay but don’t do something’s.
Sounds like you have a lot to deal with. I am finding focus and concentration difficult with RA so I can only imagine that with ADD it is much, much worse. Sometimes I also think that all of the calls on me from family could keep me in full time employment without having a job on top. Fortunately though, they are understanding and learning to cope with the new me.
It certainly takes a lot of adjustments. In our head we are the same as pre RA but our bodies tell us differently. Just have to do a bit each day and dont beat yourself up for not being able to do it ALL today.
If you havent got an RA helpline, there is always your GP if you are struggling. Take care
Thanks Evie3. I am learning slowly. Fortunately, I do have a good rheumy nurse support system. I am going to just see how I go for a few days. If it's just from over doing it (and perhaps the weather change), I will not bother them but if I feel it's turning into a longer term issue, I'll get in touch.
This will resonate with so many of us - we know just where you are coming from.
That sounds so familiar! Reassuring improvement- just as a review appointment happens- then straight into a brick wall of fatigue and joint pain. For me it’s about the most annoying thing about RA - its unpredictabiliy - I can completely understand your situation. And understand why other people find RA difficult to understand.
Fortunately for me my rheum dept has a very responsive and helpful nurse helpline - and they DO understand
Hope you feel better soon
We do! Been there!
Just back from recovery after surgery. Still groggy, so can't write a long post.I, like everyone else knows exactly what you are talking about.
Have a look at NRAS SMILE-RA and Ampersand Health "MyArthritis" app.
That's been a great help to me. Acceptance course specially. All the best.
Sorry to hear you've had this setback - it is so hard to keep track of how things are when they're often in a state of flux. I identify so much with your post - around the time I was diagnosed I was so unwell I had to take a few months off work, and then went back probably a bit too soon. I think it was a case of comparing how I was then to how I was at my worst and focusing on the improvements, and perhaps attending less to how difficult things still were. An optimistic perspective is so important but it can trip you up sometimes too! It sounds like you've made fantastic progress over the past year and a half, but challenges are still afoot. It's a constant learning curve, pacing life with this kind of condition. I'm glad you've had so many responses, and hope there is some comfort at least that this experience is shared among so many of us here. Wishing you all the very best.
Thank you! I'm sorry you're going through similar. I think that understanding and coming to terms with life with a chronic illness is a huge part of the 'battle'. I think that it is often repeated that until you experience chronic illness you just don't understand.
Completely agree with you - and coming to terms with the changes is not a simple or linear path, at least in my experience!
Oh I totally know where you’re coming from, the delightful nature of an autoimmune condition. I’m at home in bed suffering from terrible fatigue, although at present, apart from the few aches in my hip, not flaring. 🤞
For months I’d been good, great even, and started to pick up my social life again. A few weeks ago I went to a family wedding, had a great time, everyone telling me how well I looked, then the evening of the reception I’m in bed at 6.00pm in the hotel with total exhaustion and since then I’m knocked for six and been signed off work for 3 weeks. How do I explain this to people, fatigue is one of my worst symptoms. 🤷♀️
I did talk to my Rheumatologist about this, she did some extra tests and found I also had an under active thyroid and very low ferritin. I’ve been put on Levothyroxine, and my thyroid levels are back to normal, but the iron pills give me a tummy ache, so I can’t take them. Have you possibly had any other bloods done, it’s worth maybe having a look to see if there is also anything else underlying?
For the first time I’m thinking seriously of having the retirement conversation with my work, how to cope financially I don’t know, but the thought of being able to rest when I can is so appealing.
It’s difficult for people who are not in the same situation to understand, we may look ok on the outside, but underneath not, that’s one of the worst aspects of this disease, the unpredictability.
xx
Yes i also have times when i feel great & then try to catch up with things. But my rheumy nurse always says 'dont think you can clean the house from top to bottom or youll be back here'. Unfortunately shes right. I now have busy -ish day then a rest day. If i dont then it takes weeks to feel ok or back for steroid injection. Im retired so easy so say but hope you soon get back to your best x
I totally get how depressing pain and immobility can be. I have had RA for over 60 years since the age of 5. Luckily mine does not appear to be as bad as many others.
I have (had many years ago) a B.Sc in Microbiology and so I have a scientific mind. Over the years I have managed to discover that I have some food 'allergies'. Apples cause me to get terrible migraines (that one was easy - within 30 minutes it starts and after a few hours I throw up and start to feel better). Apples are in quite a few products such as juices, jams/jellies (fruit pectin) and is used as a sweetener. Even after cutting out apples I still got migraines and after excluding various things from my diet, I found it was caused by drinking coffee. I avoided apples and coffee and I haven't had a migraine in 40 years now (barring the odd 'accident').
Now RA is an autoimmune disease. This mean that my immune system is 'abnormal'. You and I get flare ups. Is it logical to think that for a month or so, your immune system is quite 'happy' and then the next day it suddenly 'decides' to start attacking tissues in your body for no good reason? OR - is it far more likely that the flare-up was triggered by EXTERNAL INFLUENCES on your immune system? I would suggest that the latter explanation is far more likely - there must be a reason why you get good and bad days.
The 'influences' on your immune system could be due to many reasons: infection, food/drink, air quality, temperature/humidity, drugs/supplements/jabs, vitamin/nutrient deficiencies, physical stress, mental stress/depression, sleep patterns, chemical skin contact, etc.
So one thing you could do is keep a diary/journal of all these things and see if there is a pattern. In particular, look for things in the PREVIOUS DAY that caused a bad reaction the following day. Since approx. 80% of your immune system is located in the gut, you should be especially meticulous in recording everything you ingest.
Look at it this way, the fact that you can have good days, bad days and flare-ups is a good sign. It means that it should be possible for you to discover what those triggers are and then avoid them.
In my case, I accidentally discovered around the age of 60 (!) that eating lots of bread caused me to have flare-ups the next day (after I bought a bread machine and started eating lots of bread and getting really bad RA pain every morning). After some years of experimenting on myself, I have now cut out all grains/flour/cereal from my diet and I no longer need to take NSAIDs (I have been drug free for 8 years now!). I have recently discovered I am also a celiac (10% of RA patients also develop celiac disease) - even a small amount of wheat flour destroyed my intestine villi! Maybe you have a food sensitivity (try the Auto-Immune Protocol diet )? Maybe it is a different trigger other than food/drink? I don't know, but why not try to find out? There is hope and the power is in our own hands (but always consult with a doctor first)!
Good luck.
Thank you for such a detailed reply. I am also a microbiologist (specialised in virology). I hear you regarding allergies/ intolerance. My husband and daughter also have migraines/ stomach problems with apples and some other fruits and my mum gets joint problems with bread. Also, after having a head injury, my mum was not recovering at all well due to dizziness, nausea and brain fog. Her neurologist did lots of interventions which weren’t working and finally said that cheese may be the cause. She’s stopped eating cheese and a lot of the issues have gone. Apparently a substance in cheese causes small changes in blood vessels which is not noticed in most people but it’s well known to cause migraines in some…it was a similar effect for her but only after the accident. I’m on a keto diet (though not totally strict) and so don’t generally eat flour. I will look into the auto immune protocol diet…it’s something I’ve been toying with but with lots of things going on and other food restrictions in the family (daughter is extremely food restricted) it’s just been easier to put it on the back burner.
When I first proved to myself that it was wheat/grains that were causing my flare-ups, I really could not believe it. I had seen various YT videos on people with RA going on certain diets and saying that it had 'cured' them and I simply counted them as 'misguided' or 'deluded' or that they were just trying to sell me something!
If grains are a problem for you (and I have no way of knowing as my only experience is with me!) then it is important to omit all grains from your diet (even the ones that are 'gluten free'). 99% of all grains contain a form of gluten, it is just that some (e.g. wheat) contain a lot and others (e.g. rice) contain very little. Also, avoid maltodextrin in food - it is not supposed to contain gluten although it is derived from malt, but I have had a few times when I have eaten GF processed grain-free foods that contained it and was bad the next day. Yeast is another source as most yeast is from brewers yeast.
You need to avoid processed foods (at least for the first few months) as you really don't know what is in them. Also, the first meal (breakfast) is very important to keep 'pure'.
I have no proof and cannot go back in time to find out, but I am wondering what would have happened if I had avoided grains (in my case) 40 years ago!
P.S. re. dairy - have you seen that most cows milk/cheese contains A1 casein, whereas sheep, goat and human milk contains all casein A2 (also 100% pure bred Jersey cow milk - A1 casein protein is due to a gene mutation in Holstein cows). So goats/sheep cheese may be worth trying as opposed to cows milk cheese.
Plodding along
Feeling rather ignored!
A Happy Day.
Sepsis anyone ...
