I'm having a day of confusion and that unwell feeling

Posted , 11 users are following.

In the last 3.5 years I've been on Prednisone for PMR, been diagnosed with cilliac disease, (blood work was very high with positive results), fibromyalgia, tried Lyrica but couldn't tolerate it) had two hips replaced and Dr says they are not healing because of the Prednisone.. still using a walker.. I walk like I have MS or Parkinson's.. my husband died and my cat that I loved so much died while I was in the hospital.. I'm on blood pressure medication, viibryd, Vicodin, inhalers because I have COPD from smoking.. CPAP machine.. oxygen was 79% on overnight test, I'm morbidly obese because I simply eat too much, I take Lexapro for sleep and the shaking spells, oh yes a pill for diabetes and stomach pills for my 3 ulcers.. I'm an absolute mess and I feel sick 90% of the time I'm awake.. I'm starting to think the medication I'm taking is making me feel worse.. I'm at a loss what to tell my Dr.. I think 3.5 years is enough time to be sick.. I know PMR is a long road but I'm getting worn out and feel like giving up.. I saw my rheumatologist 2 weeks ago and he said stay on 10mg Prednisone (what I've taken for over a year now) and come back in six months.. I think my Dr has given up on me.. my appointments have always been 2 months.. I'm sorry this is so long but I don't have anyone to talk to about how I feel.. I'm 66 and feel like I'm getting older than my age very quickly..skin problems and dark circles under eyes and I walk like I'm 90 plus and feel like bees stinging me....I know no one can fix me but I sure do appreciate this forum to be able to vent.. have a great day everyone.. Sharon and my new kitty kat Teddy

0 likes, 12 replies

12 Replies

  • Posted

    Hi Tuningup.  You definitely need more than anyone on the forum can give you.  Is there nowhere you can turn for some companionship and possibly some help as you attempt to improve your situation?  There may be an agency in your community, sometimes a church can point you in the right direction if they don't have the means to help you directly.  

    You know yourself you must do something to alter the situation but its pretty difficult when you feel physically wretched.  Can you think of some little thing you would like to do but haven't done?  A journey starts with a single step.  Don't think about the length of the journey, just that first step.  And then the second step will be easier.  it really does work that way.  But you must take that first step, even if it is to go out of your comfort zone and ask for help from a neighbour, clergy, social services agency.  Maybe you have a caregiver?  Ask them.  And if you can't face the thought of trying to do anything physical, although you know it will help in the long run, why not turn to a hobby, art or craft which may introduce you to new people?  Just a suggestion.  You have interests which could lead you out of the dark place you are in just now.  Maybe there's a charity which could use your help doing something within your strength?

    Best wishes.  Please keep in touch with the forum.  We care!

  • Posted

    PS Give Teddy a stroke from me.  We have two cats, named before we got them from Beatles songs - Eleanor and Maxwell.  Maxwell is a very appropriate name, we call him Maxicat. smile  Eleanor likes to play with those bracelets you get to support charities and such, made of silicon or plastic or something.  We throw them and she chases them, but sometimes she plays with them all by herself, tossing them up in the air and pushing them around the floor, and then losing them under furniture!  One time we found about six shoved under a corner of a dresser!  Max isn't as playful.  He likes to play with round objects, like a pingpong ball or a hazelnut but they go under furniture almost instantly.  They are brother and sister, but don't look alike.  Max is a tabby and Eleanor is white.

  • Posted

    I’m sorry to hear of all your woes.  It is certainly more than any one individual should be expected to deal with. Hope that your venting helps a bit. 

    Just remember....Don’t give up...don’t ever give up !

  • Posted

    Hi tuningup, none of us deserve the pain that PMR brings us, but you have more than your share. But this is one place you can always vent. I hope your doctor can come up with something to ease your pain. Good Luck!
  • Posted

    No wonder you are struggling to cope. You didn't say how long it is since your husband died but if it's fairly recent then you will be in early stages of grief. Even if it is some time ago have you had any bereavement counselling? It may also help with the loss you are feeling from the limitations of the illnesses with which you are coping. Has any doctor taken time to look at the medication you are on to see if it is perhaps exacerbating some of your health issues? It may be that they cannot change any of it but it is worth discussing with a physician. I find I have dark circles and I am blaming the pred as I didn't have them before and the only other medication I am on is for hay fever and it hasn't caused black circles previously. I hope you can find some support to help you cope. Best wishes.

  • Posted

    I am so sorry for your sickness and pain. I am praying for you as I write this. I pray God will ease you pain a d I pray your Dr does not give up on you. You are still a young person, don't give up, do everything you can to keep a positive attitude. I pray you will be ok.

  • Posted

    I can't add anything to what the others have already said - but just want to say I hear you. Is there any way you can get talking help? You have a lot of bereavement there - not only your husband an cat but normal life and that all hurts.

  • Posted

    Your body and soul have both had multiple shocks; no wonder you feel so low.

    Compared with you I have lead a charmed life but have had enough trauma, ( death of  long term partner, loss of beloved animals, hip replacement ) to be able to sympathise. Each time I had to be kind to myself and try to believe that time does heal. It doesn't.  What does happen is that the scar  tissue does get tougher and you have to allow that to happen. If a good cry helps then have a good cry. Stiff upper lip is over rated in my opinion. 

    As Anhaga says, you need more than we on here are qualified to offer but we will always listen.

  • Posted

    I know this is easy to say and difficult to do, but when I got diagnosed with PMR I became a nutrition nerd and started taking a real interest in food and also its contents. In fact I found it quite fun and probably bored all my friends silly, although I noticed they are starting to look at food nutrients now too. Also could you take some gentle exercise. I go swimming which I love, I know a lot of people do Tai Chi where you can meet people. There is a local class for the older person run by the Council which is incredibly popular and even in my little village they have three classes a week. Some of the people can hardly walk. They do seem to spend quite a lot of the time drinking tea! I know it is difficult to embark on something new particularly when you feel like rubbish. However afterwards you can really feel so much better. 
  • Posted

    Hi just read your post, as all the other ladies have said try not to give up, you have some hard times more than a lot of us, but talking helps and as the ladies say we all listen to each other and try and offer help. Is there a church you belong or can your doctor point  you in the direction of some home help. Even if they just listen, when my dad died we got mum some help and the lady just listened to my mum talk and eventually they became friends and the friend got my mum into the Salvation Army meals. Please don't give up. Take care regards mad mags x😀

  • Posted

    Thank you so much for the support and kind words.. I read every reply and plan on reading them again.. just for everyone's piece of mind I'm not suicidal and I live by my faith in God.. I'm quite embarrassed that I feel so sad and say I'm a Christian.. but I do appreciate all of your posts.. it helps me to know I'm not totally alone.. I watch a lot of good Christian tv that is keeping me grounded and sane... Have a great day everyone and thanks again..

    • Posted

      I think we all just wanted to give you a hug.  Your situation may be more difficult than for some of us, but with PMR we all understand quite well what you are going through, and also how surprisingly isolating the disease can be.  Thank you for getting back to us.  Keep in touch!  ❤

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