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

very depressed, overly sensitive

Posted , 18 users are following.

Nanduff
Nanduff

This is my second bout of PMR.  The first time I really did not experience any side effects of the pred...with the exception of small weight gain and slightly moon faced. 

I have been back on pred for 2 months.  Started at 20mg.  I am now down to 15 mg.  I will be reducing by 1 mg / month until I reach 10 mg.  Then I will reduce by 1/2 mg/month.

Anyway, I am having a very difficult time with depression this time.  I am usually a pretty upbeat person, but I find myself sinking.  I am so unhappy,

I am also starting to have 'mild' suicidal thoughts.. aka maybe I should just take the whole bottle of Attivan.   As quick as the thought enters my mind, its gone. 

Adding to this PMR...my husband passed away 8 yrs ago.  I am now feeling like I did in the 2-3 yrs after. I am 62 yrs old. The only thing that keeps me going are my 9 grandkids.  The problem is that I have built my whole life around only these guys.  Prior to PMR and pred, I was doing fine.

Anyway...has anyone else experienced this. And if so what did you do?

I keep telling myself to stop feeling sorry for myself and move on.

I have no pain, Thank God.  It's just the head confusion, lack of focus and now depression.

Let me know if there are any solutions?

6 likes, 35 replies

35 Replies

Prev Next
  • julian.
    julian. Nanduff

    Posted

    the effect of pred on my mind was almost as hard as the pmr physically. Mood swings, pred brain, highs and lows, poor concentration, poor problem solving, poor short term memory, changed judgement and "wasn't me".

    The pred highs were nowhere near psychotic, I would tell people when I was in "silly mode". The lows were fewer and not as deep as yours seem to be.

    The first help was knowing it could all be pred side effect. The feeling of not being grounded, of losing my reference point took a couple of weeks to overcome, through simply knowing and time.

    The lows were lows. Not that hopeless and helpless state of depression that I read about and hope I never feel. But low nevertheless.

    I've never known anyone else describe the momentary "quick as they arrive they are gone" suicide thoughts. For me never even a hint of acting on them. I can't imagine what it must be like if they ever take over.

    Beyond acceptance of pmr. Its a long term chronic condition that may steadily reduce in severity and hopefully go away. We can't change it, but we can change how we react and manage ourselves around it.

    When I found I just didn't have the energy to do things I broke them down into smaller chunks and paced myself. With a rest in between. That way I could pretend I'd been successful. And a little success is positive. Trying to do too much and failing at everything was replaced with doing the things I could, in ways that allowed me to finish. Silly things like cutting the grass could be done in small doses over a few days rather than a single draining session.

    I talked to the people around me. Not for sympathy, so they understood. Even children can understand, it just takes a bit longer. People knew when I got tired I had to stop, like hitting a brick wall. There's not much fun in me trying to continue.

    I progressively lost my fitness. And being unfit contributed to the lows. It took a coronary stent and rehab to get past that one.

    Being positive was immensely hard but for me absolutely necessary. Every time I succeeded at something was a step up. So I organised things in a way that allowed me to complete them.

    And humour. I always did laugh at myself but very much more with pmr. If you read my earlier post in different thread about cutting a 5mg tablet in half and taking two halves .... as well as the humour that's about finding a different way to do things that's achievable, and if its achievable its more positive than impossible.

    The good news is that the side effects of pred fade as the dose lowers. Conventional wisdom is that below some mystical level there aren't any. My experience is that below about 8mg/day they were sufficiently faded that I'm only just aware. I'm now down to 4mg/day and feeling relatively free. I still know I have pmr and organise my life accordingly but along with boring exercise I'm "almost normal". I've written most of this in past tense.

    I also had "mood swings". Took a while to train myself to simply walk away until I got myself under some sort of control.

    So. If you are hopeless and helpless and really depressed then talk to people and professionals.

    But also recognise that pred lows (and other lows) occur and there are practical day to day changes in how we manage our lives around the pmr that can make it so much more tolerable.

    • Anhaga
      Anhaga julian.

      Posted

      Julian, your tackling of the lawn mowing is my strategy for dealing with arduous househoold chores too.  At least you know eventually all the floors will be vacuumed or the (only necessary) ironing done!  
    • julian.
      julian. Anhaga

      Posted

      ah yes, forgot that one, what's necessary ironing?

      I stopped worrying about the things that didn't need doing. And got on with the things that were absolutely necessary.

      And when I think of it, there aren't really that many things that really need doing or can't wait. And perversely that makes it so much easier to do them.

    • Anhaga
      Anhaga julian.

      Posted

      Tea towels, table napkins and, in the summer, linen shirts.  
    • EileenH
      EileenH julian.

      Posted

      "the effect of pred on my mind was almost as hard as the pmr physically. Mood swings, pred brain, highs and lows, poor concentration, poor problem solving, poor short term memory, changed judgement and "wasn't me"."

      I experienced all that. But it wasn't pred, it was the PMR. How do I know? It all happened in the first 5 years of PMR, no pred at all. 

      Remember that the pred doesn't affec/change the underlying autoimmune disorder that is causing the symptoms for which you need the pred. Some of its effects remain and are worse the more active the disease - and so, inevitably, at the higher doses of pred.

      Autoimmune disease is also a strange beast so try not to say "it's the pred". It may not be or it may be both.

    • julian.
      julian. EileenH

      Posted

      Not enjoyable no matter what the cause. And not knowing the cause would make it all the more difficult.

      Researching known pred side effects in pmr and non-pmr patients (there is no distinction), absence of mental effects (that I was aware of) prior to treatment, absence of mental effects in general descriptions of pmr symptoms (that's not to say it doesn't happen), recognising that all the symptoms described can have causes independent of pmr or pred, presence and timing of effects with treatment, experience with different manifestations of fatigue, high stress and uncertainty in other contexts. Age is new to me.  I'm reasonably comfortable that pred was a major contributor in my circumstances.

      I keep an open mind, my world is grey not black or white, and I'm acutely aware that corelation doesn't imply cause and effect.

      More research required obviously.

      Interesting experience has been the coronary rehab. Started with caution, I didn't want a flare. I suspect simply getting fit has improved all sorts of things, as it always does. I suspect my inexorable loss of fitness during pmr had a major effect on all sorts of things.

    • EileenH
      EileenH julian.

      Posted

      My husband works with an Austrian mitochondrial research group - yesterday I was correcting the English on a new page for their MitoFit project. It is known that exercise improves mitochondrial function - and I have a suspicion that mitochondrial function may be impaired in PMR. There is currently a study starting up in the north of England where patients are being encouraged to undertake an exercise programme - nothing more stunning than increasing step number which everyone can manage - to see if it helps the PMR. I know I feel better PMR-wise when I walk more. It would be great if the study suggested enough for PMR to be included in the programmes to encourage more activity. Organised/subsidised exercise programmes are very useful and productive.
    • artfingers
      artfingers EileenH

      Posted

      Yes, this makes sense to me.  I think getting out and exercising makes such a difference, even walking is terrific.  Here in Michigan we have a track at our high school we can walk and chat with a friend when the snow is really bad - otherwise I love getting outside.  I know I always felt better when I could jog (more like a slow walk/run/shuffle) but whatever is feasible - even riding the stationary bike (what I do now).  I think having someone to talk it over with helps me.  Tonight I'm getting together with some gal friends for a sleepover and I know we shall get alot off our chests and have some fun too. I don't do that enough. Is there someone to talk to possibly? Good luck Nanduff and yes, give that bottle to someone else.
    • julian.
      julian. EileenH

      Posted

      rehab used the "Borg Scale of Perceived Exertion" while also montioring blood pressure and heart rate. It allowed me a sense of where I was up to without actually having to measure. 13 (hard) was unachievable for me initially - my muscles were so out of condition. What I could achieve at 13 increased as I became fitter. The incline and speed of the treadmill, or watts on the rowing machine, increased over a few weeks for same heart rate and breathing. Mental energy leapt. Just like getting fitter any other time I've lost it.

      I had a simple picture of improved blood flow effect on pmr. The blood thinner possibly helped.

      I find structured gym exercise a bit boring, the novelty wears off after a while. Now how to maintain fitness.

      Also where my pmr is up to. Could I have pushed the exercise a year ago? I suspect not, it was hard enough motivating myself to get out of bed and a half hour walk sent me back there. I also don't know when blocked artery had an effect, it only showed up in stress test. But I'll never know.where the physical limit really was and have no wish to go back and find out.

  • margaret84173
    margaret84173 Nanduff

    Posted

    Hi Nanduff, 

    i totally understand what you've described.  I'm a counsellor myself, and I have Pmr, and when on 15 down to 8 mg dose, I was totally depressed and wildly over reactive, agitated, felt like I was on the verge of going crazy. 

    I woke up in the mornings, feeling like I was so flat, heavy, having no desire to keep going.  I couldn't cope with the least bit of stress at home or at work.  My mum no dwelled on things that I hadn't thought about for years.  I was not my self.   I worried that everyone would think badly of me, because I felt like I was acting out of control. It was terrible.

    yet I knew my life was good, my job was good, I have great kids and family, and had never felt like this before.  I knew it was the

    For all those who are on pred but still don't recognise the side effects of depression or anxiety, believe me, it is real, not imagined.  It is not like any other depression.  It's depression caused by chemical effect.  

    Nanduff, as long as you can keep reminding yourself of this, and affirm to yourself that you know you are ok and that its just the Medes side effects, you'll come through it.  I found from 8mg the depression magically disappeared.   

    I was lucky to discover this forum, and gleaned knowledge from here about pred and its side effects.    When I mentioned it to my GP, it wasn't noted.  It made me determined to get down below 7.5 which I read somewhere seemed to be the number below which these symptoms eased.  And I've discovered this to be accurate. 

    I hope it helps you to hear my experience, and also Julian's. 

    • julian.
      julian. margaret84173

      Posted

      thanks Margaret, I can totally relate to your description.

      I'd forgotten the restlessness, but never being able to settle to anything. Struggling to read a page of a book.

      Just knowing (predominantly from this forum) I could "blame it on the pred" was truly priceless.

      "Just a minute while I clear the brain fog" was quite useful when someone wanted a decision, though of course it never cleared.

      My normally brilliant GP simply nodded wisely when in a moment of desperation I said "I don't like things that mess with my mind". Probably because she knew me well enough that if she suggested more medication I'd run a mile.

    • Nanduff
      Nanduff margaret84173

      Posted

      Thanks so much Margaret.  It does help and makes me more capable of 'lifting myself up' knowing that it happens to others and will get better.
  • barbara75814
    barbara75814 Nanduff

    Posted

    I am so sorry you are feeling so bad. Depression can make life miserable. In my case, psychotherpy was a huge help. If you decide to do therapy, make sure you find a therapist for whom you feel instantly comfortable--it's so important. I think the suicidal thoughts, even though they leave quickly, might merit at least a consultation withi a good therapist. Just something to consider--it was a lifesaver for me. Many good wishes going to you--

    Barbara

     

  • Nanduff
    Nanduff

    Posted

    Thank you everyone for all your kind thoughts.  It is so helpful to know that I am not alone with these side affects...I will discuss this with my kids..they have no idea how 'down' I am.  I also made an apt with my dr to discuss the depression.   I have always been the one to solve everyone's problems..it's not easy to 'in my mind burden my kids' with my problems.  

    Thx again.  

    • Anhaga
      Anhaga Nanduff

      Posted

      This is when you put yourself in their place.  Wouldn't you like to know when your loved ones aren't well of have some kind of problem?  You will give them the gift of being able to care for you.
Back to top
Prev 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.