just asking

hi guy I'm just asking does anyone suffer extreme tiredness with this illness , I'm tired all the rime and my days off are taken up with sleep most of th time I just cant stay awake ,I do suffer from thyroid to so that do help ,I'm on methtoxate injection and hydrquiquin when telling the doc I'm tired they just say its part of illness is this the best it gets as I'm 38 felling 101 at the minute xx

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  • I'm the same. I find that for a few days after my injection, I have no energy and fell tried all the time. At the weekend, I can sleep for 12 hours or more. My consultant says the same, it's all part of the illness.

  • My whole sleep pattern changed when i was first diagnosed. I was dozing all day and awake at night. I was virtually bedridden for three months. Then I was put on Enbrel and was soon back on my feet. I still have some pain in most of the joints but only need to take a couple of Paracetamol, occasionally, at night. Once you are on the right medication and have given it time to work, then I do hope you will also feel a lot better. Don't let the consultants brush you off though. If you don't feel the medication is working ask to be put on something else. All the best x

  • Unfortunately it is part of the illness, there is some good advice on coping mechanisms for the fatigue on RA websites.

    Pacing yourself when doing housework etc is a good one and little cat naps when u need to. Both of which I have done.

    I do find for myself it gets worse when on a flare, then I always take same me time and just relax

    Take care, finding your own way to cope does come with time.

  • Same here, I was really tired all the time and although I thought I was sleeping a lot, it wasn't until I started a course of steroids that I realised I hadn't actually been sleeping well at all.

    Think you just have to be kind to yourself and also pace yourself and try to find time to do things you want to do rather than filling your life with things you feel you need to do then finding you have no fun times left in your life because you're too tried to enjoy them (hope that makes sense)

  • Ditto x

  • Hi I was cronic tried my gp ran blood test for iron levels and it turned out I was too low taking prescription iron tablets much higher than shop brought and im hardly ever tired now xx

  • Worth checking loopy, as lorraine suggests if it is low iron it can be easily rectified, horrid though, makes me cry at everything when aneamic!! Is that nationwide advert sets me off every time😁

  • ive been on iron tabs for while but doc say my iron is ok now still cant say awake lol

  • Have y checked out your B12, vitamin D, ferritin and folates. Ask for a copy of your results with their lab ranges and make sure that your results are high in the range.

    My docs said my B12 was 'fine' when it was literally. *just* within the lower end of the range and I have a family history of pernicious anaemia.

    I know it's very cynical but when someone tells me 'the doctor says my x, y or z is OK' I always think, 'yes, but who is it ok for? You or some else?'

  • One question: Are you anaemic? I used to be very tired early on and checking my blood test results showed anaemia that explained the fatigue. It had made cycling half a mile a big challenge but as the Humira took effect, the anaemia progressively improved and hey-presto, the fatigue improved.Later on, cycling 100+ miles was possible which counts as an improvement I'd say!

    HTH.

  • Just wow!!! My husband's a cyclist, did the 1000 mile challenge (30 days) last year, pretty exhausting and he's healthy!! I love a leisurely cycle but can't recently with knee and wrists pain, any tips? I worry i'd make it worse...

  • I too cycle when I can't get outside I put my bike on an indoor trainer, abs switch the telly on, which helps the joints to keep moving without the fear of the bumpy roads triggering pain.

    I find that I'm better when i cycle it helps with fatigue too, boosting the happy hormone!

    Hope this helps to keep you moving!

    Alison

  • Ah yes we even have one of these things you put bike on to train indoors but never thought of using it!! Exactly what I could do with 😁 great thank you!

  • Oh yes The tiredness is the worst I still cannot pace myself with my housework it's like in between my sleeping I am doing little living It's frustrating but we have to try constantly don't we to get better to live for our loved ones to do the dishes and cleaning My house lacks the TLC it deserves but so does my family Sometimes I feel so helpless but disturbed sleep does help out sometimes

  • Fatigue for a lot of people is worse than the actual pain. NRAS have a really good booklet on the subject which can be downloaded from their website. I do hope you get the help you need.

  • I agree with most of what people say here but it is worth looking at other reasons for fatigue. Blood tests eg for iron deficiency are a good place to start. I find that my levels of RD fatigue vary. Often a sunny day reinvigorates!

  • I do find that my hands ache a lot after such rides but as long as I can control my bike it is a price I am willing to pay. SAo much so that Iplan on returning to competitive cycling in para-cycling because of my injury-related neurological deficits. My rheumatologist has called me inspirational that made me feel warm inside. I posted earlier about this:

    healthunlocked.com/nras/pos...

    I hope this inspires you but check out for anaemia. Be wary of iron supplements; there is American research from ten years ago, indicating that fat and cholesterol intake in our diet is not related to heart disease but that heart attack risk relates to iron intake. Example:Men who regularly donate blood reduce the risk of heart attack to the same level as young girls p i.e. who menstruate .] Also Masai tribesmen live on full-fat milk [= high fat/cholesterol/low iron] , are active of course, and suffer low heart attack rates, and so on. This has been further researched but not proved conclusively. So iron is not necessarily a good thing; enough is enough and that is all!

  • Hi LoopyLoo

    I'm sorry to hear you're finding the tiredness difficult. Unfortunately, chronic fatigue is a symptom often experienced by those with rheumatoid arthritis, so do not feel you're alone.

    We have produced a short booklet on fatigue and some of the things you can do address this symptom, which you can view here:

    nras.org.uk/publications/fa...

    I hope you find this useful. Also, remember our help line is also there on 0800 298 7650 (Monday - Friday between 9.30am and 4.30pm) if you would like further support and a chat.

    Regards,

    Mark

    NRAS

  • Yep! Annoyingly it's just one of the joys of RA! I guess managing your time and activities can help to reduce it but the meds can make you feel a bit rough sometimes so it's hard to know if it's the illness or them. I seem to go from feeling relatively ok to not knowing how I'll drive home from work because I'm shattered, sometimes though a quick shut eye can really help give you a boost. Bit of a pest but hey ho! Hope you're feeling as ok as possible x

  • It also could be the side effect of the medication that could make you feel tired too . But check with your gp if it doesn't get better sorry I can't help you more xx

  • Hi Loopy loo

    Tiredness can be a real pain, I'm someone that kinda doesn't give in to it anymore, I keep moving and active with a positive outlook ( although it's taken years to acheive) I make myself walk every day and cycle every couple of days, and I think it helps. I try not to over think it, the more I think I'm tired the more tired I get.

    Don't get me wrong there are days i don'the want to get out of bed, and sometimes after I've been out i do need to rest. But I find excise helps to keep depression away! Been there don't like it!

    Good luck I hope you find your way of coping, we all have a different approach!

    Alison.

  • Yes, I have RA and I think the fatigue is far more debilitating then the pain. I have to pace myself everyday and not to over do things or I will pay for it for days after.

  • yep I work full time three nights a week 10 hour shifts and as much as my partner who is ill himself trys to understand he wants me to keep working as I'm in college doing my nvq in social care as I work in a care home so not easy work , it really gets me and I feel so worn out all the time ive just appied for pip and fill that at time I just aint got the energy to go on anymore I'm after advice do I continue working for as long as I fill i can but be shattered every day I have off or do I quit and claim benefits and try to enjoy my life as much as I can with this horrible illness

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