tired all time

hello this is my first post ever. my life changed literally overnight when I woke up 4 months ago and could not move. I am on prednisone and plaquenil. I feel better but being exhausted all the time sux and I love to work out and have always lifted weights. I don't know how to deal with my mind being myself and my body being someone else??

need support

11 Replies

oldestnewest
  • Hello and welcome to our group. It is such a challenging disease, RA has its ups and it's downs but i am glad you are feeling a bit better on your drugs. The exhaustion is a massive downside though and something I think most of us experience, I know I personally find the complete exhaustion as disabling as the inflammation in my joints. You have not said your age but I guess you must be much younger than me!

    I would say to you at this stage, take one day at a time, learn to pace yourself a bit and don't be fazed if you cannot do so much of your weights etc. maybe try something a bit gentler for the time being, swimming, etc.

    I hope you have the support of a good rheumatologist and associated support team because that is a wonderful base to work from.

    Please come on here, ask for advice, however silly it might seem, someone on here has usually experienced similar things and is bound to offer you help. I personally have learned so much from this group, and it does help to learn others are going thru what you are yourself. Hope to hear from you again, Take care, lynda xx

  • Hello

    We all eventually used to the feelings associated with RA , all I can suggest i see the GP and you will most probably sent to see a Specialist who should be able to assist in the suppression of the pains we all suffer

    It has been thirty years for me now and I was like you very fit and active, we all need to pace ourselves and learn all the Relaxation Techniques that we learn from a Pain Clinic, This is something you should consider to help you fulfilling your life choices. You do not need to stop all that you used to do three months ago. Over time you will be able to do many things that you may want to do.

    At this time I do not know what sort of treatments you are on and if they are sending you to a Pain Clinic as that will open up many avenues for you with your complaint. The two medications are general Prendison is a steriod and the other slows the immune system They should suppress the pains you are having given time.

    All I can suggest is be open to suggestions, this site is here for you if you need support or suggestions on your condition. You sound young, you will find a mixture of people on this site all willing too help

    All the very best for Christmas and New year

    BOB

  • Hiya, just wanted to say hello and tell you a success story quickly! (My 3 year old is currently busy but not for long)

    Just want to say, right now for you this is the hardest time, it was for me, like you mine started within days but was referred quickly and started treatment within 4 months also.

    Thought my life was over, this was almost 3 years to the day when my RA hit me everywhere. 12 months later I was in medically induced remission and have been ever since :)

    Being diagnosed and treated early makes such a huge difference and I appreciate every day being almost as I was. I work part time, study, have 2 children and had to give up the gym recently not because of the tiredness but I just never had time.

    I have no sign of deterioration and thankfully the fatigue is once in a while.

    3 years ago on Xmas day I was I tears not knowing why I couldn't,t change a nappy or hold my little girl without being in extreme pain, even started goodbye letters to my children thinking I was dying! Yesterday was my happiest Xmas ever, I,m so so lucky.

    You will get there, it will get better, the medications are amazing and soon as you find the right one you,ll be lifting your weights again.

    Take care x

  • Your reply interests me. I used to be very fit and active. 4 years ago I was diagnosed with poly myalgia rheumatica which developed into RA after 2 years. I have much muscle wastage and would love to go back to the gym. What sort of things did you do at the gym? I am worried that if I do exercises it will cause a relapse. I would value your comments. Anne

  • Hi Anne, it was a slow process really. Around 6 months into diagnosis I was sent for physio which I was started of on gentle stretches to help with muscle wastage, but mostly walking properly again.

    I started short cycles which I found easier than walking anywhere. When my RA started to settle I joined curves gym, have you heard of it? If not, google and you,ll get loads of info but basically on my induction I told them about my RA and they were very supportive, the pace at curves works at just 30secs working on one piece of gym equipment before going onto next. I loved this as It never gave me time to get tired before moving onto another part of body. This only takes 20 mins followed by a cool down. When I started I may only do a couple of repetitions on each machine but after a few months I could do around 20 to 30!

    Apart from some weight and inch loss I found that the confidence, strength and mostly sense of achievement made me so happy, like getting your life back.

    It was slow but I was lucky as I also started enbrel at same time which also made my RA settle.

    Gosh, think I may just have to try make time again, I miss it now after telling you :)

    I did ask my RA nurse who said she supported curves (she also went to this gym) I was frightened about a relapse also but she re assured me just to take it easy.

    What's your thoughts? I have also thought about tai chi or Pilates

  • Hi, the nearest curves gym is 20 miles away, so a bit far. It was Pilates which brought on my PMR. I went to a beginners class where there was over 20 in the class.the moves we were told to do were extreme, I later found out, and I damaged my back, which led to PMR. If you did go to a class make sure there are no more than 7 in a class - then the tutor can keep an eye on you. I would like to do tai chi but one needs to go to a beginners class and there are none here. I will think about a local gym. What's enbrel? Anne

  • Hi Anne, sorry somehow I don,t get notifications and missed your reply! That's shocking to think Pilates was brought on like that, sounds a bit strenuous as well, will give that a miss I think! :)

    I was thinking of local gym also as curves was an expensive commitment, my husband suggest the cross trainer would be good to strengthen up but I,m not sure. Enbrel is one of the anti-tnf,s. it,s been a life changer for me!

  • Thanks for your reply. Be careful on a cross trainer as it can be quite easy to over do it. I fell over on the ice the other day and am suffering as a result! My bloods are up at the moment, so am wondering what is happening. Can't walk far , so will wait to see how I progress before I attempt a gym. I get so fed up that I cannot do what I used to do......but right now I just want to walk again!!!!! Happy New Year. Anne

  • Hi

    This is exactly how I started 2 years ago had to sell our business and from being an active person my life changed to almost being house bound. I have now started on the biologics and am starting to feel so much better more energy less pain. Please push and push to get the right drug to help your RA , Please don't become reliant on the Prednisolone as it masks the damage, but it is fantastic short term for the symptoms of this rotten disease.

    Keep positive and talk to people on here, even if you don't post you will get lots of inspiration and help.

    Very best wishes

    Lorraine x

  • Hi, just wanted to say we all know how devastating it feels when you first hear the words "you have RA". You feel so frightened and alone. But there is help and support available. There is this site. There is also the NRAS helpline , a free service manned by fellow sufferers...just google it!! Lots of good advice and help from them.

    Don't despair! Best wishes M x

  • Hi Hatshepsut

    Thank you for mentioning the NRAS helpline. I just wanted to clear up that we are not fellow sufferers, but we do have a lot of knowledge of this condition from the thousands of calls we take from people with RA. If anyone wants to call the helpline, the number is 0800 298 7650 and we are available Mon-Fri, 9.30-4.30.

    Kind regards

    Victoria

    (NRAS Helpline)

You may also like...