New member, but not new to RA

Hiya,

My name is Evy and I am a 41 year old woman who lives in Belgium with her 2 cats. I am a member of some running communities here on HealthUnlocked and thought to join this group too.

I have been diagnosed with RA early 2013, when I was 32 years old, after struggling with pains in hands and feet, ending up being unable to write and hardly walk anymore. I even got laughed at by a specialist, because they couldn't find anything wrong with me on an MRI and such. It was all in my head they said. Luckily 1 physician did believe me and I ended up with a good rheumatic specialist who is looking after me now.

At first I had to take cortisones to get the inflammations down and then got Salazopyrine / Sulfasalazine. It helped very well, until I got some inflammations again in 2019. Had to take Ledertrexate / Methotrexate and when that did not help, I was cleared to get 4-weekly IV's of Roactemra / Tocilizumab (in combination with weekly Ledertrexate / Methotrexate).

All in all I have no reason to complain, because I have no pains at the moment and I can practically do anything I want. But recently I thought about the fact that I always call myself lazy as I am often tired and not in the mood to do anything exhausting. It appears this is a side effect from RA and not me just being lazy. Ok, no problem, I can live with that.

But while I have always been a bit lazy (maybe because of the RA), nowadays I want to do more physical activities (is this a midlife crisis already?). I have been running since about 1,5 years and even succeeded in getting to 10 miles. Unfortunately due to getting a scare outdoors, running has been put on a low. Nevertheless I took upon me a challenge of walking more than 1000 km in about a year (Conqueror challenge of Lord of the Rings), because of which I 'should' walk at least 3 km every day.

I thought this would be easy peasy, knowing I ran 10 miles end November last year and started last Friday. But I seriously underestimated the effect of walking every day on my body. Ok, I did have a tiring weekend with lots of walking around in shops and hammering a border into the ground and such. But after a mere 5 days of walking every day (sometimes 3 km, sometimes up to 5 km), it has come to me that maybe my body has limits I did not know of before and honestly? I am struggling with that knowledge.

In my head I am still a vigorous 20 year old, but my body seems to disagree. I would love to walk 3 km every day and combine it with running a few times and maybe going to the gym and I don't know what. I'd love to be more physically active and so-called healthy. But it appears I am to get to know my boundaries and that I can not do what I want to do.

I know I should not complain, because I don't have pains while others (like a colleague) need to take additional pain medication just to be able to do their desk job. That doesn't mean it isn't frustrating to realize my body is not how I wish it were.

Are there others like me in this situation and how have you been able to wrap your mind around it? How do you learn to cope with it and find it ok that you can't do everything you want?

Thanks for reading this all!

Evy

[AgedCrone]

Welcome Evy….I think you are being hard on yourself…..why not try walking 1.5k every second day..,charging straight in to 3k every day was maybe a bit ambitious don’t you think….then work up to 2k then 3k daily over a time you set yourself?We all think we are 21…until we do something & like you……find it brings on the aches & pains….so we have to slow down bit.

Maybe start travelling a bit,,,,plenty of exercise sightseeing…..& meeting lots of fellow walkers……with new ideas on exercise as the years roll on?

[Hidden in reply to AgedCrone]

Not a big fan of travelling anymore to be honest. I used to travel a bit when I was younger, but now I am scared of flying and I can't leave my cats.

The 3 km walking a day should be ok I think. It is not too much as long as I kept my day calm. I just need to realize not to combine too much in 1 day like I did this past weekend. It is just difficult keeping this in mind as I still think I can do anything and everything 😬.

[AgedCrone in reply to Hidden]

As you say, planning what you can manage every day certainly helps…I’m not that organised..I just go with the flow..& if I’m retired I can take time off when I feel like it.You certainly sound determined so I am sure you will make that 1000k…just don’t let that ambition overtake enjoying life.

[Hidden in reply to AgedCrone]

Oh but trust me, I am far from that organised myself. It is something I hope to try to strive for. Trying not to forget to balance things.

As for those 1000K, it forces me to go outside a bit more and that is healthy I think, also for my mind. The past 2 years I have not come outside a lot besides when running and the obligated office days. But corona was a good excuse to remain locked inside. But because of that I got a bit reclusive. Forcing myself outside is healthy I think?

[AgedCrone in reply to Hidden]

Yes it is good to get outside….& l do think a lot of us have become too solitary ….staying indoors far too much in the last couple of years…..but in fact I moved house so I had to mingle & get things sorted so I didn’t feel too solitary.Now we are on the Easter break …I am hoping for good weather to start on a plan for my garden…so far we still have early morning frosts….so any planting will have to wait a few weeks.

Enjoy the weekend…don’t overdo things….planned rest periods really do help.

[EmmaSpicer-NRAS]

A huge welcome Evy, thank you so much for sharing your story and experiences of living with RA, with us all. If you haven't visited the NRAS website before you may find some of our featured stories a comforting read: nras.org.uk/connect-with-ot... I'm sure there are many others that may feel the same way as you. All the best, Emma

[Hidden in reply to EmmaSpicer-NRAS]

Thank you, will visit the site!

[nomoreheels]

Hiya Evy, welcome to the NRAS site. I must say your English is very good! Actually I think you're doing extremely well with your challenge, even though you feel you're not. It's not something I could even consider so really admire your fervour.

It's not entirely relative as I usually share it when others fail to understand how RD can cause fatigue but maybe the Spoons Theory is worth a read, you'll find it here cdn.totalcomputersusa.com/b...

Just one small favour I’d like to ask. When referring to any medicines could you please use their generic name? It's just brand names can differ in different countries whereas generic names don't. For example I needed to check Ledertrexate & Salazopyrine. I did guess it would be what we call methotrexate & sulfasalazine but needed to confirm it. Coincidentally RoActemra is a brand used here, but the generic name is tocilizumab. It will help lots so there's no confusion.

In addition, if you happen upon any UK med brand names, & any other abbreviations used on the site which you don't understand we do have a list of them under Pinned Posts (to the right on my iPad). I'll give you the link here healthunlocked.com/nras/pos... but if you ever need to look for it again just tap/click See all > (to the right of Pinned Posts) & go down to the bottom of the list, you'll find it there.

I hope you enjoy being here. We're a diverse lot, but with a commonality, we all understand how it is to live with RD & associated autoimmune/rheumatic diseases. If there's anything we can help with or experiences we can share you only need ask, no question too silly, we've probably heard it all! 😉

[Hidden in reply to nomoreheels]

I edited my post to adapt the names of the meds. I actually only knew the brand names, we don't use the other names here. Hope it is ok as such!

[nomoreheels in reply to Hidden]

RYou didn’t need to do that but thank you. That's similar to the US, they generally only use brand names. Just for info though, the medicine name will always be under the brand name of the box the tablets/injections come in, excepting those you're administered, you probably won't have sight of those I wouldn’t think, though for some reason we have a tendency to use the brand names of biologics too. Most confusing! 🤦‍♀️

[Hidden]

Welcome to this brilliant site.

Your story is similar to mine . Dismissed as depression for many years and eventually diagnosed with S- negative RA. I went down the demard and biologic route now on Barcitinb. I’ve never really had any pain lots of swelling and major stiffness but fatigue is my worst symptom and still is . Like you often feel lazy. I saw a physio last week and he said fatigue is a sign of inflammation and active RA. I contacted my nurse who has made an appointment with my rheumatologist as it’s impacting my life so much . Unfortunately it’s one of the symptoms made light off but as you know it’s anything but.exercise is hit and miss for me some days I find I can walk a few miles other days I’m lucky to do 100 steps.

[Hidden in reply to Hidden]

Sorry to read you suffer so much from it. I do feel lucky my RA is calm and I don't suffer from pains and such. As for the fatigue, I talked about it with my rheumatologist on Tuesday as I did think fatigue had to do with inflammation. But according to him that is not always the case. But apparently there is still not much / enough known about fatigue in RA.

[Lolabridge]

Hello and welcome.

I can relate to your experience having felt rather lazy for years and I remember telling my doctor often that I was tired much of the time. He always dismissed it and probably wrote TATT on my notes! I realised later that I am also hypermobile so physical activity has never been that enjoyable for me (with the exception of swimming).

There was an interesting segment about Fibromyalgia on Morning Live today, a BBC1 TV programme. It often occurs in middle aged people, especially women, who experience fatigue, pain, with a generally increased sensitivity to pain, plus sleep, memory ("brain fog") and mood issues. The doctor on the programme said it is not well understood and very much underdiagnosed. But there is now more research into Fibro and all chronic fatigue syndromes because of the symptoms many are now experiencing after covid.

Some of us have been diagnosed with Fibromyalgia; it is fairly common in RA sufferers.

I have it and am finding amitriptyline helps me, particularly with improving my sleep.

I wonder if you may have it too?

[Hidden in reply to Lolabridge]

Now you say this, I actually wonder it myself too. My rheumatologist has once mentioned I might have it, but that was it. There has never been anything examined further. I am not hypermobile, but can bend my joints slightly further than most other people. Especially at my knees this can sometimes be annoying. I do have an increased sensitivity to pain as in, I feel pain faster or harder than others. Eg. hitting my toe against something appears to hurt me more than my mother. My specialist also said that I am lucky I felt so much pain when my RA started that because of it, I looked further and further until I got help. Because of which I have been helped faster than a lot of other RA patients who just keep going. As for memory, I always say I just have a bad memory. I actually don't remember having flown in a helicopter over the Niagara falls and need the pictures taken as a proof I actually did so. People find this weird, but I have a very bad memory (except for bad things, those I can remember well enough). But I also often have difficulty remembering what I ate the day before. As for sleep, I don't know what the signs of sleep are for Fibro. I often need to take a nap during the day, but at night - while I do fall asleep very quickly - I often wake up to toss and turn and am awake often too early. Are those all signs of possibly having Fibro? Maybe I can check with my rheumatologist next time I have an appointment (in 2 months).

[Lolabridge in reply to Hidden]

Yes they are. Fatigue and disturbed sleep (tossing and turning and waking frequently) often means we need a nap during the day. Taking amitriptyline has definitely helped me sleep better and is often prescribed for Fibromyalgia. Look for more information on the main NRAS website and also on the Versus Arthritis website.

[Hidden in reply to Lolabridge]

Thanks, will do!

[Fruitandnutcase]

Hi Eve, welcome to the group. It’s tough when you realise your body isn’t what it used to be but your mind is still ok. I’m 74 this year but it’s hard to believe I’m that age. Honestly at times my body often feels like it’s 100+ but I’m like you - in my head I’m a vigorous young thing. Long story but I developed a sacral insufficiency fracture last year which brought the exercise I was getting to a sudden stop. For a while I just wondered if it was my inflammatory arthritis that was making me creaky but nope - it was much worse. I’m recovering now and getting back into walking again but I find things beginning to ache when I get to 4-5 thousand steps.

The physiotherapist I worked with said he saw no reason that I couldn’t get back to my previous 10k steps a day and that I needed to think of getting there by doing it is stages throughout the day so I do 3or 4K steps, then rest (usually over a cup of coffee) and do another 3-4 K and so on. So maybe you could work up to doing the distances you want to do by doing them that way. It’s not how you want to be and it’s annoying being like this but it’s better than giving in.

[Hidden in reply to Fruitandnutcase]

Thanks and yes, it is indeed frustrating when you bump into the boundaries of your body, when not realizing your body has boundaries. I hear my colleagues talk about the fitness they do, body combat, running, their household, etc. And I am jealous, because I want to do all that too, but now find I can't. In the past I considered myself too lazy to do all that, already getting tired by the idea alone. But now I'd love doing it all too, but find I can't.

Either way, I will cope with it. Just have to wrap my mind around things. Step by step and not taking big leaps, that will be the trick 😉

[Fruitandnutcase in reply to Hidden]

It is tough to realise that you just can’t do things that you used to do. Even if you didn’t want to do them before.You need to model yourself on your two cats (especially if they are anything like the cat who has recently moved in next door to us and who thinks our garden and now our house is an extension of his property) cats know how to lie around and conserve energy.

[Hidden in reply to Fruitandnutcase]

Haha, well my one cat sleeps a lot, but is hyperkinetic on other moments, dragging her favorite toy around the house. When I play with her, I often get tired before she does. My other cat unfortunately is not healthy (hyperthyroid, chronic pancreatitis and chronic inflammation of the stomach) and rests continuously. Maybe a combination of the 2? 😂

[Nellies47]

Hi Evy.Im 48 years old. I am relatively new to RA, since May '21.

Prior to that I was diagnosed with PBC( primary billary cholangitis)Dec 20.

I had been a runner for as long as I can remember, ran a half marathon in 2020 . Since RA I struggle with exercise. Up to Jan '22 I was able to do an occasional 5k but now I struggle to walk 2-3k. I try to do this every day. (I have been advised exercise is medicine for PBC). But some days that 2k feels like a half marathon. I too find it hard to adjust to the new me. I am like you say "trying to wrap my head around it", and some days I admitI'm quite sad to remember the old energetic me.

I suppose we will in time find that these walks are enough for us and enjoy what we can do. Like what others said previously , maybe some days just do less , I try to listen to my body.

I also have a daily nap, I find this really helps me cope with the daily demands of my 2 teenagers 🙂.

[Hidden in reply to Nellies47]

Thanks for your story and sorry to read you had to give up your running. I also take a nap once in a while and I find days at the office for example more tiring than home office days. Mostly I take a nap after lunch in the weekends, having the time for a nap then. Although I also often feel bad afterwards for having 'lost' that time instead of doing something useful. I file that now in the same cabinet as the fact I still think of myself as having a 20 year old (non RA) body. The thought is there, but I am going to try to look differently at it from now on. I am going to try to think of a nap as 'body healing time' or something. Good luck with wrapping your head around it all, you're much faster at that stage than I was. I lived in ignorance for 10 years, thinking of myself as lazy.

[Nellies47 in reply to Hidden]

Hi.No not at all, I'm really find it hard to adjust. I'm a nurse and I'm off work since Nov. I have a lot of pain. I don't tolerate methotrexate and my rheumatologist is waiting to see what gastroenterology says re my stomach, as I have nausea on/off since February and my liver is inflamed so treatment for me is restricted. So I'm in limbo re treatment.

I would normally be a very active person and this lifestyle is very hard to get use to.

I have great faith in God and I feel he is giving me strength 🙏to get from day to day, and my naps😴they are my time to recharge. I know what you mean by saying that you hate wasting that time, but I have found with out them I am very irritable and exhausted.

I hope you find joy. I have to concentrate on what is good and positive in life. I suppose we are all on this journey together which is supportive. I find this support group great, it makes me see how others are getting on and other options too.

Take care.

[Hidden in reply to Nellies47]

That is also why I joined here. I have just taken my RA as it came the past years, but now that I realize my limits, I find I need a bit of support or read about others how they cope with things and such. So happy to be here, though it had been better if none of us had to be in this group of course.

[Nellies47 in reply to Hidden]

Yes I agree, every one in this group are very nice 💐

[summer32A]

Water exercise is my friend and short walk!

[Hidden in reply to summer32A]

I do like to swim, but I don't like all the rustle around it: having to switch clothes, shower, try to get into the water (I hate the cold temperature of the swimming pools), shower again, get dressed, drive home. If I had a swimming pool at home, I think I'd swim every day! 😊

[summer32A in reply to Hidden]

I only go to a warm pool

[Hidden in reply to summer32A]

Unfortunately that is not in my neighborhood. The only warm pools I know of are in tropical swimming / holiday places. And unfortunately those are too far away and always filled to the brim with playing children, which makes it difficult to do some proper swimming. But those tropical pools are too chilly too, still stand at the side half an hour to get in, hahaha.

[Sheila_G]

Hi Evy. Good to have you in the group. Firstly , the 'specialist' who laughed at you is in the wrong job. We all understand how you feel. None of us can do what we used to be able to do and even with age (I am 71) I still feel 20 years old in my head. 😁 I think you are doing well. You say you have no pain so that is excellent I know a lot of people on here would like to be able to say that. I was 51 when I was diagnosed and there have been very difficult times during those twenty years but I can honestly say that I do more now than I did then. I think when we are young we can't see a time when we will be infirm and that is good but in hindsight I wish I had climbed mountains, run marathons, travelled the world when I could because I want to now. 😪

[Hidden in reply to Sheila_G]

I know I am very lucky not to be in pain. A colleague of mine also has RA, she is younger than I am and already has 2 new hips. And besides her biologicals she also has to take pain meds every day to be able to work (desk job). Her story is very very bad, she has RA since a child and the things she has gone through... So I do feel lucky that being tired and not being able to do all due to the limits of my body is all I have. And the problems I hear my fellow patients talk about when we get our IV's at the hospital, I am lucky indeed. Just need to get my head around the fact I don't have the body of a healthy 20 year old. Though I do feel 'glad' to come to realize I am not lazy as I have thought so long, but just 'not healthy'.

[patrickd]

Hi there and welcome! I too mentioned this fatigue, yeah, seems lazy but it is not. I do feel others look at me that way at times. Please do not think of yourself as lazy because you are not. The word "lazy" is defined as unwilling to work or use energy. We with RA are NOT "unwilling" we are just "unable" and just can't. As far as using energy...it's hard to use energy that isn't there. When that RA fatigue sets in and it is truly debilitating. Call it what it is really is RA fatigue. I find my body won't do what my mind wants and it is horribly annoying. I too feel like my RA is under control so it just so strange that the fatigue is not. For me, I have good days and bad days, like a roller coaster. One day I have a ton of energy and I do so much (I probably over do it), the next day I pay.

[Hidden in reply to patrickd]

Very recognizable.

Funny little thing, but I wear a Garmin watch at all times, one that measures my heartrate, stress, body battery, etc. 24/7. Bought it originally as a smartwatch, then used it as an activity tracking for my running (and now my walks). And that body battery thingy is very accurate. It goes from 5% to 100% and whenever I feel I have loads of energy, the body battery also shows I have had a good sleep, loading my 'battery' up high into the 80's. Though most days I get up, not feeling rested at all (while I did sleep the whole night) and my body battery shows as around 50/60%.

I don't go by the number my watch shows me, but it is remarkable that I actually often feel as per those numbers. Somewhere this week I woke up at a body battery of 51% and honestly, I had trouble dragging myself up the stairs at work (just 1 floor and I am scared of the elevator having been stuck in it once), felt like I had run a marathon already.

Maybe I should pay more attention to this body battery thingy on my watch. And when I wake up with a low body battery, pay attention to what I do that day and take care not to overdo things.

[patrickd in reply to Hidden]

Maybe I should invest in one of those Garmin watches?. Sounds pretty accurate. I believe in the future items like these will be found more and more in use. I've even seen TV Documentaries stating that in the future our Smart Phones will have the technology to perform various types of health tests, blood pressure, temperature, diabetics, etc. Amazing the technology advances going on in the world today!

I do wish there was a cure for "fatigue" but asking for it is a bit too much I guess. If I had to make a choice I would most def. rather have NO pain than no fatigue but seems only those with RA (other diseases too) understand what we go through. I have two teenage boys and I feel like I am a horrible role model for them. I try to explain how RA affects me and feels and what it does BUT it's difficult for them to understand let alone anyone else. How can I get angry at either one of them when they sleep in or are too tired to mow the lawn, or too tired to clean their room? I've even had my youngest say to me..."well you are in bed"..oh YIKES. How can I argue with them to NOT be lazy? Sometimes too I feel like a broken record saying the same reason over and over, so I don't even go there anymore with the RA issues. I get no sympathy living with 3 male species! Love them to pieces though!

[Hidden in reply to patrickd]

I can understand it is hard with 2 boys and in general men (whatever age) are not that understanding about illnesses. What I also find annoying is that I look healthy (well not at the moment - have a bout of sun allergy on my face 😳), because of which people often don't believe you. I remember when I was just diagnosed and I still had lots of pain, especially in my feet. I had to take the subway and I slipped in the last empty seat. This girl, who by the way was younger than me, was angry and started babbling against people about the nerve I had for taking that seat. The problem was that I am very shy and I didn't dare speak up for myself. Otherwise I would have let her know she was free to take my seat, if she also took my arthritis with it. Unfortunately I just sat there, being judged by people and to this day, now 9 years later or so, I regret not having spoken up.

[patrickd in reply to Hidden]

Awe. I'm sure you look beautiful with some sun or not! But your story...That's horrible. Do not regret how you handled that because it sounds like you handled it like a true lady! I, on the other hand, might have had some choice words for her which I would end up regretting! People tell me that ALL the time...you don't look sick or how can you be in pain? In fact, I lost my brother & sister 13 years ago (neither speak to me). They always thought I was exaggerating my pain, my illness, and well, I hate to say this too, I was on 50/40mgs of Pred. back then so I was not very nice about anything AT ALL (if you know what I mean). Maybe we need a t-shirt that says "I might look great but I have Rheumatoid" or something like that. To be fair though, I do understand. If I was healthy I'd have a hard time understanding.

[Hidden in reply to patrickd]

I must admit I now understand my mother better. She has arthrosis (or how is it called in English) and maybe Fibro too. She is constantly in pain and if she does something heavy or a lot together, she is beat. I always tell her she had to balance things, not do everything in 1 day, but do something today and something tomorrow, etc. She says she can't, it's just not in her. Now I understand better both the tiredness she often had and the fact it's difficult to balance things. I also want to do everything in 1 day, despite being unable to do that. So if I only now understand my mother, with whom I live every day, I can understand healthy people don't get it either.

[patrickd in reply to Hidden]

It is so tough to "balance". I've tried so hard to but can't. If I get a really good day, I ALWAYS overdo it because there ends up being so much that has been neglected by ME not doing it. Ladies, please tell me...if it's just a "USA" thing?? The men here do NOT clean (especially toilets, or anything considered to be "nasty" to clean). NONE of them (well to be fair, none of the men in my life)! If MEN do "clean" anything it is done horribly thus causing me to re-clean it properly. Also, USA men are very good at playing VERY dumb when it comes to "doing" household chores. They play that "I have no idea how to do that" and by the time you explain how r show them how to the chore could be done.😉

[allanah]

Hi, just to say hello and welcome x

[Hidden in reply to allanah]

Thank you 😊

[Green230461]

Welcome! My rheummy suggested a daily dose of vitamin D for fatigue and it has helped. We don’t get much sunshine in the winter which causes low levels and adds to tiredness. 🍀

[Hidden in reply to Green230461]

Thanks. I don't have a daily dose of vitamin D, but we (my parents and I) do take a glass capsule of vitamin D every month.

[Green230461 in reply to Hidden]

It also helps your body absorb other drugs and calcium. Many RA warriors also have low vit D levels, iron levels and calcium levels. Each element can make you feel fatigued. 😎

[patrickd in reply to Green230461]

Do you mind telling me how much vitamin D he suggested? Is there a certain type or brand? I would take any vitamin IF it would help my fatigue even just a smidge.

[oldtimer2 in reply to patrickd]

I think it's worth asking for a blood test for your Vit D level. I spend lots of time outside and was amazed to find that my levels were low (measured early summer). I take 25 microgrammes (note not milligrammes) every day in the months with short days and three times a week in the longer days.

I don't think it has made any difference, however, to my fatigue levels, which are usually due to an overambitious schedule even though I know about the spoons theory, and have had Rheumatoid Disease for 44 years.

And a welcome to BlackScorpion who has got everyone talking.

[Hidden in reply to oldtimer2]

I have very recently had a bloodtest, I let a full test be done twice a year as I am a vegetarian. My vitamin D was low, but withing normal range.

[patrickd in reply to oldtimer2]

I think I am going to ask for that! Something I forget about and I do not see much sun in Buffalo, NY during winter! Thank you for the advice.

[Green230461 in reply to patrickd]

He said 10 micrograms in one standard tablet. Also to increase my intake of oily fish- yuk red meat and egg yolk! All of which I eat very little of so maybe that is why!!😊

[patrickd in reply to Green230461]

Thank you! Always interesting to hear more advice and different takes. I am going to give that a try myself as I love vitamin advice.

[Green230461 in reply to patrickd]

I have felt so much better!

[patrickd in reply to Green230461]

Some people do not take much stock in "vitamins" and I personally prefer natural treatments. With RA, I had no choice than modern medicine for effective relief but I do believe that a lack of vitamins can wreak havoc in the "balance". I also believe that some of the strong meds. can deplete your body of some of those much-needed supplements. Your advice about D makes a lot of good sense to me. Sounds like you have a very good doctor in your corner!