1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

Achy and Sad

Posted , 12 users are following.

Heyyady
Heyyady

I woke up achy today- hips/pelvis, thighs, Shoulders/neck, arms, and now I'm just scared that the medication isn't working sad Am I just being unrealistic about how well I should be feeling? I've been on 10 mg for 13 days. Am I just going to have bad days for a while? 

1 like, 18 replies

18 Replies

Next
  • dianthusdoris
    dianthusdoris Heyyady

    Posted

    Well I certainly have bad days Heyyady!   I don't know about other people.   One day I will feel marvellous, and then another not so good, and another horrible.   I guess that is the disease.   Can anyone confirm this?
  • joan123456
    joan123456 Heyyady

    Posted

    I started out on 15 right off the bat and started to feel better in about 5 days, 10 might be a lower dose than necessary, check with your doctor.  You will have great days and not so great days.  Sometimes when you start to feel better you overdue then feel not so great for a few days.  At 15 I was on kind of a prednisone high, cleaned every cupboard in the house, etc, so try not to do that, I did pay for it.
  • lodgerUK_NE
    lodgerUK_NE Heyyady

    Posted

    Little bit more info would help.

    When diagnosed, how many mgs to start with, how have you been reducing and how fast?  Rheumatologist or GP in charge?

    Handling PMR and pred takes a while to get used to, but it can be done you just have a lot to learn - but knowledge is power and there is light at the end of a tunnel, it is just we don't know how long the tunnel is.

  • ptolemy
    ptolemy Heyyady

    Posted

    I have good days and bad days too. I have felt really well recently until yesterday afternoon when I became achey for no real reason apart from doing the Big Bird Watch, which was not exactly strenuous. I just tell myself that I have an illness and I cannot expect to feel one hundred per cent in spite of the pred. 
  • EileenH
    EileenH Heyyady

    Posted

    So what were you doing yesterday? I know you said you had a nap - but did you then do more because you felt good? That is the most common cause of this effect! Or has the weather changed - yes, I know you're in California but you do occasionally get changes in the weather! I find wind bad. Worse than cold - but that isn't an issue where you are is it!

    It isn't really known how the underlying autoimmune disorder functions - does it remain steady, does it cycle, does it sometimes stop altogether and then come back? You may have started the pred at a relatively inactive point - and the activity has gone up a bit so there is more inflammation. It is a low starting dose you are on - and you have had PMR for a while so I would have thought you might need a bit more than 10mg to get things well under control. But even so - yes, we all have good and bad days. All we can promise is that, for most people, the good days will eventually outnumber the bad days - how long that will take is a case of "how long is a piece of string?" I'm afraid. 

    • Heyyady
      Heyyady EileenH

      Posted

      I have a call out to my Dr and my Accupuncturist (Who is also an MD) about increasing my dosage. Unfortunately I think they are going to balk and want me to wait to see the rheumi in mid February.

      The weather is extremely mild here right now, so I don't think that's it- I too have a harder time with the cold wind sad Yesterday I took it pretty easy other than I did do a fair amount of cooking. BUt nothing that should have caused this much pain. 

      I think I have been hoping for a miracle, and it's hard knowing it's not happening- I just need to be patient. 

       

  • Bababoyd
    Bababoyd Heyyady

    Posted

    I have had flair and had to go higher to get going again, 20 for me and I could usually feel better in about 5 days. Maybe you need to see if you need a little higher a short time.
  • TimTooYoung
    TimTooYoung Heyyady

    Posted

    Heyyady I was first diagnosed in November with PMR, Pred 10mgs started working for me within 24 hours. Unfortunately at the beginning of January I was taken into hospital with suspected GCA. I'm now on 40mgs of Pred. Since then I have had good days and bad days. The best advice that's been given to me is look after yourself with good food and excercise, but don't fight it. If you need to rest, rest. Lots of fruit and veg. How does that sound.? I have been for a nice walk today, that's made me feel good.
    • Padada
      Padada TimTooYoung

      Posted

      Hello, TimTooYoung,  Would you please share what your symptoms were of the 'suspected GCA'? Were they vision problems. 

      Yes, good food, fruit and veggies, sound sensible.  It is good that you feel like taking a walk.  I have no energy to do so, but I would make myself if I thought it would be beneficial. 

      Nice to hear from you.  Sorry you have PMR and possibly GCA. 

       

  • Padada
    Padada Heyyady

    Posted

      I think it is so helpful to hear everyone's experience.  And especially if you are new to PMR, as I am (2 weeks on 15 mg).

    I too, am puzzled by the better days and bad days, so I have asked about that a lot, and have been given such good answers. 

    So far I have no really good days.  Some days I have less pain than other days.  Some days I feel less flu-like symptoms, but I always feel like I have the flu - fatigue, loss of appetite, achy.

    So I guess that everyone is agreeing that having good, better of bad days and not knowing which one you will wake up to, is common. 

    To tell you the truth, I hate it.  I wish I could stop it, and I am probably not alone.  I don't know how you do it with the young twins you have to take care of.  But Eileen is right about getting rest when you can.

    Also, I have noticed that overdoing it and stressing about it cause more pain. 

    Hope this adds to your knowledge base.   I am too new to really help much.  I just so love that folks that are willing to answer our newbie questions. 

    Hope tomorrow is a better day for all of us. 

     

     

    • EileenH
      EileenH Padada

      Posted

      The flu-feeling and fatigue are due to the underlying autoimmune illness - the pred doesn't have a lot of effect on that and at the beginning that remains for some time. It will improve - I won't promise it will go away altogether though.

      It is like flu and colds - if you can rest it helps. 

      And while I know it easy for me to say - really do try not to stress about it! PMR LOVES stress!

      Perhaps you on the other side of the pond might understand me using the word "grace"? I don't know. But acceptance of being where you are will make a massive difference to how you feel. Fighting against the constraints of PMR will waste energy that is far better devoted to coping with your day to day management of your life. Yes - I'd rather be out on the mountain skiing. But I have accepted that is maybe not entirely the best thing I can do at present. It doesn't mean I cannot hope that I will be out there again - just not today or tomorrow...

    • Padada
      Padada EileenH

      Posted

      Thank you Eileen.  I have such a new gratitude for everyone that takes their time to respond and give input into the questions asked here.  Hopefully this realization of the kindness of others, will make me a better person in the future. 

      May I just say a Thank You to everyone who is posting here and trying to help others.  Your kindness will come back to you....

      As to the flu-feeling and fatigue staying around - oh my, I have to process that as it seems a discouraging fact. 

      Yes, 'grace under fire' is what comes to my mind. And I don't have it yet because I still haven't accepted that I will be feeling like this possibly for years (with only some improvement, but still on prednisone and fatigue). I have not been able to accept it yet.  I know I must and I must get a better attitude.  You have said it perfectly when you say that 'fighting against the constraints of PMR' wastes energy. 

      I am not alone, so therefore I hope no one feels I am being overly dramatic.  But this is where I am at this time.  Please forgive and thank you for allowing me to vent a little. 

      I will try not to stress as you suggest, as I do see a direct link to increased pain from stress.  I do rest a lot, in that I can't do a normal day's chores at home, not do I visit with friends or go shopping unless I must. 

      Eileen, you are very kind and I am glad to know that it is possible to reach the place that you have regarding acceptance and then being able to reach out to help others.  Many regards Mary Jane

        

    • EileenH
      EileenH Padada

      Posted

      It isn't for ever - it often isn't very long in the great scheme of things. If you learn nothing else with PMR, you will learn patience!
Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.