Can someone help with tips for the tiredness and fatigue please?

Hi All

Recently been diagnosed with RA with very high positive CCP test. Am 31 so has took me by surprise a bit. I'm on two types of medications hydroxychloroquine and sulfadiazine. I must admit touch wood not had many bad side effects with them.

Does anyone find they just now and then feel really really unwell? It's like having flu but without the blocked nose, sore throat, sore chest, coughing and spluttering and no energy whatsoever!

Apart from the obvious flare ups which is awful the one main thing struggling with is having no energy and just want to sleep all the time. Even if have enough sleep I am still struggling. Got to point where I'm struggling to keep my eyes open at work till around lunchtime. I asked my RA consultant and basically in so many words can't do anything about that and apparently when tablets start working and go into remission it should start to ease. Does anyone have any tips? I'm desperate for any helps at all.

Thanks

32 Replies

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  • Exercise is the answer. As much as you can manage. Even if your are really whacked try and do some. Mad as it sounds it really helps.

  • Yes. I can still remember my physics teacher from school telling the class " to create energy, one must use energy!"

  • I keep hearing exercise is good for you but when I do I can't move the next day. I start out very slow and that doesn't help either, I get bad flare ups no matter what I do. Is there any better exercise than others. I have tried walking, biking and swimming. Do I just go with the pain and it will get better? Thank you and have a good day.

  • Hi Lovekittys - I found that even a chiropractic visit can cause pain when you are active in the disease process. It is hard to find a good exercise, but I have found tai chi is pretty non-impactive and it helps you to stretch your muscles... Mainly you just need to move. your lymph system has no natural pump and depends on you to move around for it to work well

  • I am now looking into Tai Chi thank you

  • Commiserations. I was 29 when diagnosed and it certainly shook me. I'm afraid pacing yourself will become part of your life. There will be good times and less good. Takes some adjusting to. Best wishes!

  • Thanks all. I do as much exercising as possible although problem is my tablets haven't started working yet so it's a catch 22. Do exercising like walking etc and then produces a flare up crazy! lol I've even taken up swimming too. It's all very frustrating, actually feel trapped in my own body.

    Do you find that you feel like got flu for a lot of the time?

    Thanks

  • Yes you must pace yourself but also must know your limitations. This disease is so aggravating as the mind may be willing but the body not so much.

  • I hear that RA can cause you to feel like you have the flu all of the time. Hopefully when the meds start working those symptoms will go away. I am not sure if they do or not. Still learning about this disease. Hope you have a great day.

  • Thank you :) hopefully will get there soon. You too!!

  • Yes I am similar to you, recently diagnosed aged 27 and my tablets are not working yet either. My RA came on after having my first child. I have been on courses of steroids as I haven't been able to cope. When the steroid effects wear off, and my joints are really bad, I too feel that I am unwell. And I'm so tired. I don't have any tips really, I just have to take naps at the weekend and I try to swim twice a week.

    I am just hoping that once the tablets work, it will get better. All we can do is hope!

  • How you can manage this disease and look after a very young, dependent child is beyond me, that must be so tough. It's a horrible horrible disease. x

  • Bless you, and having a baby too must be hard :( fingers crossed the meds start working soon!

  • Hopefully when you find the right meds combination and your RA is better controlled you will feel more energy. Inflammation causes the flu like symptoms. Make sure you have a good diet and pace yourself. My rheumy said yesterday, no magic cure for tiredness and fatigue. Might be a good idea to ask for blood tests for Vit D, iron defincancy ,folate and ferritin levels. Be kind to yourself. X

  • Hi thank you. I was Vitamin D deficient when had my first bloods at GPs which is when I also found out I was very high positive CCP. Before I waited a month to see the Rhemy I started taking Vitamin D3 supplements and last blood test my Vit D levels were normal so that was good despite my levels had gone up more for CCP as tested again. I know sometimes can get anaemia so think may start taking multi vitamins with iron in. It's just horrible my mind wants to do so much but my body just won't let me it's so frustrating!! :(

  • Hi Tara. I have the same trouble, very active mind and energy levels, not quite matching. I have had this decease for 32 years, good deal older than you. Apart from meds have tried many different things over the years. I have always suffered with anaemia, however have Vit b12 injections every 3 months, these have helped greatly. Diet, I do the Zoe Harcombe diet, for 3 years now, also helps with my Hashimoto's. I also go to Falls prevention class each week and do the exercises every day, to build up my muscles. Its a gentle approach. It's about finding what suits you. Rest when you can. Take care. X

  • Like veryone else says I'm afraid you have to learn to lace yourself. I found swimming made my hands worse but maybe that's the way I swim! I was diagnosed at forty and am fairly well settled. Every five years or so my cocktail of drugs need changing and then it settles again. Good luck and try to keep positive. X

  • Thank you :) I went swimming and I was starting to ache but I went in sauna after and oh my goodness felt amazing and actually helped. Just shame I had to step out of it as went back to achy once out lol. It's just very frustrating! On plus side loosing weight cause have been having problems with my Jaw joints so chewing is a bit of an issue at times lol x

  • Personally, I think that you also need to get as much sleep as you can, as well as the other suggestions. Sleep is your best friend for healing.

    Also, pace yourself carefully - you need to maximize the energy levels you do have to things that simply must be done. Leave out the rest for now. Don't worry about cleaning the house, other than clearing things like dishes, do laundry and shopping as you need to, but the other things will wait.

    For the things I must do, I operate my time and life by what I jokingly call the rule of three. I do three things of significance - clean up the kitchen, fold and put away a load of laundry, etc., then I allow myself a five minute break (or whatever it takes to keep moving). I find that the reward of taking a short break is enough to keep me working even when I think I might not be able to or want to. Best of luck with this!

  • Thank you so much. Just frustrating when want to do something but joints won't let you. Or you do what you want to do then suffer for about 2 days after!

  • I hate to tell you this Tara, but that is one of the hallmarks of this disease, even when you are in remission. Now, before you despair, what I mean is that you will pretty much always need to be somewhat careful. You will learn what your body will allow you to do, and not, and there are times (who can say why?) when you do the things you normally can do, and it will still cause you to hurt for a couple of days. So, as we've said, just be nice to yourself, and be gentle.

  • I was diagnosed around 30 but I know I had it earlier than that misdiagnosed. I am now 50 soon And have struggled and muddled through. Lots of forces are at play and you need to find what is good for you. I find that 30 minutes stationary bike that makes me sweat gets toxins out leaving me less inflamed the next day. I also found a starvation morning or celery and cucumber juice and nothing else really lifted my pains. Everybody is different and what works for one may not work for you. You will find out what is good for you with trial and error. Just like the drugs

  • Thank you :)

  • GO into remission i have had RA for almost 15 years and have never went into remission i am still waiting for it to happen sorry to be so down about it

  • Oh bless you. What drugs did you try? Am hoping the 2 they put me on starts working.

  • Thank you all it's nice to talk to people that understand. Especially as to look at most of us you wouldn't be able to tell so very hard to explain to someone that doesn't know unless you have a flare up and physically cannot use your joints that's only time people see. They can't see the struggles of fatigue and tiredness and just feeling generally unwell. I've done a bit of research and am trying out the whole red and black fruits as apparently they have natural inflammatories in. Starting drinking Cherry juice everyday so let's see if that makes even a slight difference. I like to think I'm trying to be positive can be stubborn and don't like to think things can get the better of me. Only time will tell I suppose. It's become so normal now that I don't know what it's like to not feel aches and pains and tiredness! Lol

  • Blueberries are wonderful too

  • Thank you. Am eating so much of these fruits think they are coming out my ear holes lol

  • I do a lot of natural remedies for my RA along with my biologic cimzia. Tumeric and ginger, organic foods, juicing with organic fruits and vegetables. Less sugar and research foods that can keep your inflammation lower. Also research for an arthritis diet that will help. Try to do some form of exercise and some small weights.

  • I've started taking curcumin tablets from Holland and Barratt am hoping they work as they cost a small fortune lol.

    I've been walking more and started swimming although the problem is when really bad can hardly walk so sometimes catch 22 :(

    I read about the less sugar think going to have to start sugar counting in my foods lol

    I have been on a proper health kick last few weeks but certainly going to look into a proper diet.

    Thank you :)

  • Hang in there

  • :) thank you

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