This is my first blog so not quite sure what to write, so I'll just see what pops into my head. Got diagnosed with RA 3 years ago but had been suffering for about 5 years prior. I'm not having the best of times at the moment, really really tired and all my joints, not just the normal feet, hands and knees are suffering. Hopefully its just a blip, my last blood test showed me as being anaemic, so I'm upping my veggie intake and taking supplements. Sometimes it just seems so unfair, but reading the other blogs I know that I'm actually in pretty good shape compared to some fellow sufferers. I get so frustrated with having this horrible disease at times. I used to love running, but I've had to cut back on that - I now only run on a treadmill, so that I can stop immediately if theres a problem, whereas I used to love running outdoors. I know that I'm just having a bout at the moment, so in a few days I'll be back to normal, but just feeling a bit sorry for myself today.
Hi Roxy, Ive only just been diagnosed so unfortunately I cant give any words of wisdom but I hope your feeling better real soon.
Take care
Philip
welcome to group ,could be ra or could be your meds? do have fibromyalgia too?
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Hi, I've not got fibromyalgia as far as I'm aware, so its probably just the RA. I think I'm going to have to respect what my body is telling me a bit more as others have advised and listen when my body is saying slow down for a while.
I've had the same problem recently. I was diagnosed with RA 1993(ish) and it's the first time I've had problems with being anaemic and feeling so tired. Tried drinking lucozade which did seem to help a little. Biggest improvement was increasing my coffee intake in the morning (I know - it's not good with RA but I don't drink tea). The coffee increase may of course have nothing to do with the improvement in how I feel, RA is so unpredictable but it may be worth having a go.
I'm tired all the time too (got two little ones keep me pretty busy) but I think being in a flare and being in pain makes me really very tired, sometimes I'm so exhausted come the weekend I just sleep in for hours! Being anaemic won't help matters so increasing your uptake on iron will hopefully improve your symptoms. I was found to be anaemic first then as I went further downhill it was discovered that I was also Vit D and B12 deficient, which both still cause me a little bother every so often. If you don't feel any improvement don't put up with it go back to your GP for more tests. I'm into my fourth year with RA and I'm still getting used to it, it doesn't help matters that it seems to alter it's course just as I think I've got a handle on it! I really hope you are feeling 'better' soon, take care, Jo xx
I know it's of very little comfort to say your not alone, but it really does help to have this page to visit and realise your not the only one, it makes you feel less lonely, which is something I have aways found as no one seems to understand. I've had RA for nearly five years now and in all honesty I'm still in the 'why me' stage. Like you I enjoyed a very healthy life with lots of out door activities, cross county running etc. Can I be so bald as to say that I think using a running machine might not be the best thing to be doing anymore; it might be time for gentle walks and swimming. I'm anaemic too, but like Jo i've got two little ones at home to keep me busy, but I have to confess to having a sleep while me baby has his morning sleep. One thing I have learnt (and only recently) is listen to what your body is telling you. If it's telling you that it hurts then rest, if it's telling you it's tired then rest. I know it's boring but it's time to put your 'listening ears on' as my little boy told me the other day! Keep writing down your thoughts; it does help. Regards Mel
...ok that should say GOOD morning, not Go, the D key seems to be having a bad morning!
Hi Roxy roo roo. Tired is my middle name. It gets on your pip. Mind you if you are anaemic then that is probably what is making things worse at the mo. I have only been properly diagnosed since October 2010, but I have had probs with peculiar pain and swelling in various places for some years. I used to run until recurring bouts of plantar faciitis put a stop to it. Now the only thing that runs is my nose! I am not trying to depress you, just saying how it is.. you are not alone in feeling sorry for yourself, it's a side effect! Nice to hear from you, and keep blogging, let us know how you get on. One thing I have learned is that if anything different happens see your GP speakto rheummy nurse, come on here, anything, you will feel better and hopefully get some answers...
Hi Roxyrooroo. Being tired is part of RA - in fact it is extreme fatigue some of the time. If you are B12 deficient as well, that doesn't help although that should show up on your blood tests. I have a B12 injection every 3 months which does help. Also I take a multi vit tablet each day which also helps. If you are Vit D deficient, 15 minutes a day in the sun should sort that out - don't use high factor sun cream - you are not in it long enough. You need sunlight to manufacture the Vit D.
Like Julie I also have plantar fasciitis - in fact this was the forerunner of the RA being diagnosed 3 months later following a blood test when my ESR was off the scale as was the CRP marker. I was diagnosed with RA 3 1/2 years ago. Past the "why me" bit now. (I ask myself why not me - I am not so special that nothing goes wrong!)
Running is not a good idea if your knees etc are painful as it will just make it worse. I have a Wii Fit Board so can adjust the exercises according to how I feel. Walking is the best you can do but stop the moment you feel you have had enough. There is no point forcing your body to do things as it will just make the RA worse. I was told by my Consultant, GP and practice Nurse that when in pain. REST, REST and more REST until the flare up settles down.
I also take 200mg Nurofen when it is bad and put my feet up. Housework, job, walking the dogs etc all have to wait until I feel better. It is something you learn as time goes on, exactly what you can and can't do. I know it is difficult when you have small children to think about but my little grand children know if I am having a bad day and try to keep quiet and are very sympathetic. RA comes and goes with bad flare ups and not so bad. You will learn to recognise them for what they are and adjust accordingly. Very best wishes. the group is always here to chat to. LavendarLady
urr re 'why me' I was not saying that i'm too special to have anything wrong with me just when I see others smoking, eating rubbish, doing drugs and having a healthy life when I've always been so healthy one can't help but thinking 'why me.' I see people with far worse wrong so i'm grateful for who I am. Maybe I'm having a sensitive day and should ignore this but thought I'd reply.
Sorry to hear that you are in pain as Ali has said maybe you have fibromyalgia as well the RA and that do go hand in hand, signs a bit low aches in muscles and tendons and also you can be a bit weepy.
Now this running machine might not be a good idea as it does shock your joints, do you swim or walking as someone else suggested could help. You have also done the right thing by coming on here as you can moan and winge as much as you like and you will find that some else feels the same way.
Hi Roxy....I've recently joined aswell so welcome! I have to say that the tiredness is one of the most difficult things to deal with ...I've had RA since I was 6 and am now nearly 18 and tiredness definately comes often along the way however dont' be disheartened....you will get used to it. Everybody has good and bad days and it's really annoying not being able to do things that you enjoy. I wish i could run but I'm far too unhealthy! It's very easy to feel like its unfair...I certaintly have my feeling sorry for my self days but at least we can basically do everything we want to and some people don't always get the chance too- its nice to remember this sometimes, definately makes me feel more lucky :). I hope you feel better soon :). Xx
hi roxy..ive just joined this site but have had ra for 20years and often feel tired all the time, sorry but its goes with the ra , so does feeling down. Im still asking why me even though i know there are many people much worst than me but after all we are only human, and your right it does seem unfair that we should suffer when others abuse their body, im almost housebound but do have a mobilty scooter which i love to get out and about on, felt daft at first cos im only 52 ,but fine most people are very helpfull and friendly, I know it can be hard but try and keep your chin up ,rest when you need to ,and enjoy yourself when you can,when im feeling fed up i listen to some happy music or watch mama mia my favorite dvd always make me feel better, take care and hope you feel better soon.....liz
I am a member of feeling tired. why me and sometimes feeling sorry for myself club.. we are all members xx
Wow! I didn't expect so many replies, it really is a 'community' isn't it! I feel better already!
Hi Roxy, I've had RA 17 years and I'm afraid to say the tiredness/fatigue is all part of it. You will learn to listen to your body, I'm not going to repeat what everyone else as said but you have been given some very good advice so I wont say it again.
I still have days when I feel sorry for myself,and why me days, and its not just because of the ra I've had previous problems before that to do with something completely different. It's not very often I feel like that now I've had it to long and been through to much, but the way you are feeling is perfectly normal I think your just trying to still be the person you once were with the running etc. But you need to look after yourself too its the only way forward.
I know its awful when everything hurts I too have had all my joints affected and nearly all operated on too but things will get better.
We are all individual with our RA, you need to accept what is happening and most important pace yourself, I know its difficult to do those thing but it certainly helps. You will get there.
Take care
Mandy xx
I think the underlying theme of many of your comments is to 'leave the treadmill alone!!!' Point taken!!!!
I've just written about being tired made worse in heatwaves in Britain on the folic acid blog. But it does seem to add another layer to the inflammation I think.
On why me - my mother had RA for many years, and used to wake up thinking that she'd just go for a run, or play a game of tennis or something. I retired recently and have been able to take up painting seriously, which is what I always really wanted to do. And I found myself painting sheets blowiing in the wind on a washing line, rocks in deserted places and rockpools on the sea shore. I've just realised why I have this theme of wild places and the elements: its because I cant do the long walks in the wild I used to. I think this is a good way of adjusting - not that I will ever be reconciled to the RA.
I think it is possible that RA can allow us to develop in ways that we would not have possibly done without it. I am thinking of the wonderful pictures painted by the male artist who has RA and donates to NRAS. I feel bad because today his name slips my mind. We can buy his stuff on line.
When we are soo tired that we can only sleep or rest and even then it is hard to recover any life force or energy- it frankly is depressing for most of us. But we have no choice but to PACE and look outwards if we can. I love the image of the sheets blowing in the wind from Cathie. Its beautiful and I can feel my horizons widening already.......xxx
It was nice painting it too, Sparkle! Just hope the RA will permit me to carry on.
XX
Hi RoxyRooRoo,
Yes, this is a great site isn't it! what a great support I've had since diagnosed...
I was thinking about your comment about maybe giving up the treadmil, today I went for a short cycle for the first time since last august (was 6 pregnant and first signs of RA)....
During my first flare in Jan this year I thought I'd never be able to do these things again, like yourself I was very active before.... I remember crying seeing mums out pushing prams ect...
Anyway, point is, today as I said, took the bike out, my husband said I even looked different when I came back, I was so very happy. It did hurt but all of a sudden I feel as if I have some control again. I saw my consultant yesterday who told me my RA was aggressive and not responding to meds, I'm on 3 dmrd's at once so now qualify for a biologic.....
So today, I thought, better make the most of what I can do while I can, just incase the biologic doesn't work, sorry, I'll get to the point!!lol
If you can continue the treadmil and enjoy it, keep going if you can, if it makes you happy then don't give up
Then again, I did go to bed for half an hour after my cycle! but I loved it and plan to do it again tomorrow!!
Take care x
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Carpe Diem !
Fiona xx
ps hope I spelt it correctly
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Haha you did spell it correctly, I had to google to see what it meant! you're too sophisticated for me x
Hi Roxyrooroo,
Welcome to HU and NRAS. Hope you enjoy being part of the community and find the information and support valuable.
I was diagnosed with very aggressive RA 23 years ago at a time when medication was limited to anti-inflammatories, steroids and pain killers. Lots to hide the symptoms but nothing to slow down the progress of the disease I have run the gamut of medication (although new meds are being introduced regularly) and many surgical procedures along the way. Currently on Enbrel, Methotrexate, Naproxen, Prednisolone, Nortriptylline, Folic Acid and a bucket load of pain relief! I'm married with four children in various stages of education.
I used to be very sporty and participated in county athletics and table tennis. Running is now out of the question and I play table tennis only occasionally. Definitely no treadmill, sorry to say! Any type of weight bearing exercise is a definite 'no' because of unnecessary pressures on the feet, ankles and knees! They might not be a problem now but why push your luck?
Anaemia is best controlled by your GP who will be able to check your ferritin levels and prescribe an adequate amount of ferrous sulphate. This should help with the tiredness.
Look forward to getting to know you
Lyn x
live how you all you see fitxx we have to make the best of a bad job!!, be a bit careful if in a flare or ! active phase or similar as joints are at risk of damage¬¬!! my current limit is to hobble to and around work no stick allowed in department!! health and safety lol nhs lol!!( that is not lots of love by the way its laugh out loud and a sit in a jacuzzi or once week hydro at last free of charge via nhs! jogging is out!!! walking on treadmill is ok limit to 5 min/ 10min maybe if well enough. there are blogs on here re exercise.. mine ! and tia stephs bounce bounce about pt rebounders
Hi Rox and welcome, we should be called the tired society, recently we were all thinking the name of RA should be changed, maybe it should be linked to the fatigue too! This site has been great for me 3 years diagnosed too! seems was an epidemic of diagnosing about 3 years ago! We all have down times, but as the others know I am doing well at moment. The tiredness is a big obstacle. I am continuing to work albeit (who says that these days!) part time, and it takes big effort, sometimes not sure if thats just me tho!
Was very surprised you are still running, I used to run but was advised not to anymore, haha as if I could! I am back going for nice leisurely stroll and am happy with that.
Looking forward to hearing more from all the new chatterers! If we are all awake!
It frustrates me that people think that our fatigue is just being tired. They say that they get tired too but don't understand what real fatigue is. When you say how much you really hurt they say they have aches and pain too.
Before I had the RA I used to dance, swim, do aqua aerobics, study French, run a guide unit, go camping and hiking with the guides - now I am in a wheelchair! At least I get a seat when I go out.
I know what you mean BurgandyCoral
I have never known fatigue like this- it absolutely wipes me out like a tsunami.
How long have you been in a chair? what led to that? knees or hips or something?
Take Care
Fiona x
How I explain the fatigue is like this - "you know when you've had flu (proper flu] and despite being in bed for a week you're so exhausted that even getting a shower seems like too much effort and leaves you weak and wobbly and ready for bed again? - that's what the fatigue of an auto-immune disease is like"
It seems to get through to folks this way
I remember in the early days, telling my rheumy that I was "so tired that I could just lie down on the pavement and cry - except there would be no point and anyway I wouldn't be able to get back up again".
I'm afraid that it seems to go with the RA territory Adapting my life has been the best way to cope - Pacing, frequent naps and stopping when I need to or as soon after as is possible - adjusting my working hours to whatever is my current 'normal' - all this allows me to feel like I have some control in my life!
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Adapting my life has been the best way to cope - Pacing, frequent naps and stopping when I need to or as soon after as is possible - adjusting my working hours to whatever is my current 'normal' - all this allows me to feel like I have some control in my life!
Tired Beyond Belief!
Off the steroids for a while!!
Feeling so low at the moment
