I need to ask the advice of the forum again, and l hope some of you kind folk can help me.
I have been taking Prednisolone for around three yrs now, currently on 12mg, up from 7mg following a flare. 7mg is the lowest l have managed before my symptoms return.
My problem is this…. for some considerable time now, l have been having very negative thoughts, l can’t seem to shake them off, no matter how hard l try.
They take the form of an overwhelming desire to leave everyone and everything behind and just go and be by myself.
I just don’t care anymore about what that course of action may cost me.
Is it the Prednisolone? Can it do that to you?
Does this resonate with anyone?
I feel so lost and confused, l don’t know what’s going on with me. Are these thoughts and feelings genuine or drug induced.
I await your wise words x
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Legsandmore
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Did this start while you were on 7mg> That is a range of dose where adrenal insufficiency can have an effect and it can cause that sort of feeling.
However - do talk to your GP. There is help out there but you do usually have to ask to access it . Some regions do have self-referral options - try googling local mental health services.
No, they started before that, ie the 7mg. I know the Pred can cause mood swings, anger etc, but this is so specific. I don’t think it helps that my other half simply doesn’t seem to be able to take on board how this condition makes me feel. I try so very hard to keep positive and not to let the condition rule my life.
I am not sure my positive outlook is helping, as l feel no one takes my struggles seriously anymore.
I feel that recently he is showing signs of irritation and boredom. I don’t want to demonise him, but he is very much giving me the, enough of it now, shake it off vibe.
He doesn’t seem to have the capacity to accept how painful and debilitating the condition can be.
Recently he said, because of other side effects the Pred is causing, just stop taking the stuff then, he knows l cannot do that, then said he meant taper off asap.
Perhaps this is the root cause of my negative thoughts?
I shall take your advice, l need someone to talk to.
I had an OH like that!!! Though he tended to just shut off and ignore anything he didn't like. I think you really do need to talk to someone though, It is hard when you end up on your own and I think it is worse when actually there is someone there who should be upholding their promise of in sickness and in health.
I am on my own with pmr and gca coming up to 10 years and the mood swings including a long lasting depression has lead me down the track of isolation. Fortunately there have been family, friends and a great GP who refused to let me go that way and insisted I speak with a psychologist about things. Have done this and although not a magic cure certainly relieved much that was troubling me and I no longer seek isolation. Legsandmore you too can do it please, get a GP mental health referral.
I am so sorry that you are going through such a rough time. I’m thinking that it may well be time to ask your GP to refer you to a rheumatologist considering the inability to taper below 7mg Pred and the fact that your mental health is clearly suffering. In respect of the latter, there may be something of use to you in the following link:
Hi Legsandmore, I have always been something of a worrier and I think the complexity of PMR and GCA and the lack of knowledge of the condition by many GPs etc leaves many of us feeling unsupported and a bit at sea. ( Thank goodness for this site and all the wisdom here).
I have been off pred for 10 months but still feel a bit off colour and wobbly frequently. I have a tendency to awfulize and can imagine small symptoms turning into something major. I got my BP tested at the chemist and it was quite high recently and I was imagining all sorts. However I googled what might be helpful and started short walks daily in a forest nearby and the local park and upped my dark chocolate and other helpful foods, I am also challenging my negative thoughts and low and behold after a few days BP is back in the normal range.!
I agree with the suggestions about getting some supportive counselling - I have had plenty. Whilst doing so could you find something to lift your mood ; good escapist film, positive people , getting outside. ( i find sitting watching the birds in the garden first thing is helpful.)
I'm so sorry you feel like this. Please do ask for help.
I think the problem is that physically we can look quite well. It's hard for others to understand especially as it just seems to happen for no visible reason
Remember you can always call the Samaritans if it does get too much.
Sorry to hear you are in such a low frame of mind.. as others have said, there is help out there, so please ask.
Certainly some of it is Pred related, and probably adrenal related as well.. but that doesn't mean you have to endure it.
It's unfortunate that you cannot reach out to your OH, but very often your nearest and dearest find it difficult when you are unwell... and he may be in denial re that.
Oh dear. The negative thinking is hard to deal with. Maybe a little break on your own might help. Or a counsellor. Talking all this through with someone who really listens can work wonders. I think we sometimes have to accept that our nearest and dearest just don't get it. We can't change them. So do something for you instead. Anything that will help you feel better. A massage. A new dress. Anything. Speak to your GP. Good luck.
Oh your words really resonate with me. The urge to run away gets so strong sometimes. Just coping with the pain, juggling different drs and diagnosis, and fatigue is enough. I often think if I am alone I wouldn’t have to feel guilty about asking my husband for help, limiting his social life. He is fed up with the constant talk about illness, he has told me so. And his sense of humour is very sarcastic so trying to figure that out is a challenge.
I would highly recommend some talk therapy, starting with your GP if you feel comfortable with that. Most important is to voice your thoughts. In what way do you mean leave everybody. Serious words needing prompt action.
So sorry, this is a very hard illness and it can make you feel defeated but we are all here to listen and some of us experiencing the same things. Very best wishes and loving thoughts going out to you.
Pred definitely impinged on my thoughts big time. I think a mixture of that and generally feeling unwell gets too much. I already had ME and fibromyalgia but i never had the negativity that came with PMR and pred. You are not alone, we are here, but that doesnt help when you are trying to navigate your way through it. I've been very bad with that "wish i could run away" feeling lately but i'd be taking the pred etc., with me!!! And my husband is great, i dont even have that issue! Maybe a sympathetic GP would be a place to start for you? Its tough but hopefully a passing phase. Let us know how you get on.
Your post could have been written by me. I flare at 7mg, I feel really low, no-one understands (how could they?), I want to be alone, I'm a pig to my wife, who is beautiful, and I couldn't live without her. But I get through eventually and keep going.
It isn't you, Its the PMR and the drugs. Hate them with a passion. Plan every morning how you are going to get through the day with PMR. You will win - it will go eventually, it just might take time.
Look after yourself in the meantime. You are very special and precious, you deserve better than all of this.
Just to add to what has already been said, I am a retired counsellor and would really recommend seeing someone for the support that you are not getting at home. If you can afford it, finding your own counsellor is ideal. Have a look at the BACP or UKCP websites that have loads of counsellors and psychotherapists listed who are well qualified and abide by proper ethical guidelines.
I have had PMR for well over 12 years and never got below 8.5 mgs so far, so can really empathise with how it feels. I myself have just started seeing a therapist recently as I have been overwhelmed with physical issues .
Hi legs and more.So very sorry to hear you are feeling as low as this.Even though well meaning people say they understand and sympathise,not many really understand what we all go through do they?Sad that other half is not very supportive of you.What if the roles were reversed,bet he would want all the sympathy,help and understanding that you so rightly deserve eh?No use saying to you keep your chin up,NOTHING anybody can say will make you feel any different if you are this low.If you cannot see a counsellor or similar,have you got a really good friend you could open up to,maybe have a weep if needed?This is what this great forum is for,to unload,share the burden,realise you are not alone here.We all have been there,I still am,OH has dementia,just come out of hospital with a heart issue and by god he is not an easy patient!I have wept,screamed inwardly this week and like you feel like packing up all my animals and running for the hills but I know I can’t.This disease is awful,a long road that none of us expected to be travelling on.but YOU will get there,as I will.PLEASE don’t feel alone,you are not!Sending you a comforting hug and kind thoughts.x💐
Hugs for you too. Mine wasn't diagnosed with dementia but he had periods when he might as well have been. I'm not sure I screamed inwardly every time ....
Thanks for that,means a lot believe me.Dementia or not,not all men but most men seem to be worse patients than women but don’t want to offend any men on this forum by saying this!One of dogs really not good,waiting for X-rays on Thursday,worrying the life out of me,plus OH etc,feeling pretty washed out.Listening to cricket but they are playing as I feel.,Never mind,shall crack on,might even treat myself to a whiskey and coke later,but maybe a couple of wine gums would be better for me eh?xx😪🐕🌼😜
Sorry to hear that you’re having a tough time. I read your post with interest as I’ve been feeling really low this past couple of weeks. I can usually rouse myself and lift my mood but I just want to sleep and cry. I believe that it’s the very low dose that I’m now on of Pred. Adrenals need to wake up and all, but it’s hard. Sending best wishes to you x
It is only natural to seek a trigger to blame for such persistent thoughts. However, never rule out the stress of living with a chronic illness itself. The most important thing is to reach out widely for help and reassurance, which you are doing.
Diseases and disabilities that leave the sufferer looking normal are notorious for not eliciting sympathy or understanding from others.
Dear all, wow and thanks for the positive advice and sharing your experiences with me.
I spoke to my GP who responded better than l had expected. He is of the school of thought that PMR shouldn’t last longer than 18 months and as my blood markers didn’t show what they ought to have done, then maybe it’s not PMR.
Once he had handed me over to a Rheumatologist he really took a back seat and remains very reluctant to do anything the Rheumatologist doesn’t ask for.
Thanks to this forum l have been able to confidently challenge those opinions.
I do have a Rheumatologist who also never really pinned his flag to the PMR mast, again due to the bloods, not being right, but my symptoms are classic PMR inc the unintentional weight loss, and the response to the Pred which was instant.
I have asked to be referred to another Rheumatologist, this one l have researched myself and feel he has more expertise with this condition.
I have been taking the Pred for over three years now and l have seen my Rheumatologist twice in that time. Once if you don’t count the initial consultation. If l request an appointment I am offered a telephone call with the nurse, a face to face with the consultant isn’t possible until March 2025.
Due to the chronic burning in my feet, l insisted that bloods be done, as suspected the results were not good, high cholesterol and raised blood sugar, these are the first bloods l have had since the initial ones in 2021.
They now want me to take statins!
So yes l am asking with more authority for better help than previously given.
I am also going to talk to a therapist about my struggles with the dark thoughts, please be assured that when l talk about wanting to go away and not come back, l don’t mean l am thinking of harming myself.
I feel renewed by your support and although it can feel so lonely at times, it’s good to know that l am not alone in this struggle.
All the best in your quest for a doctor who understands PMR. Have you referred your GP to the charity website and Prof Mackie's Myth Busters? The first of which I think was the 2 year myth ,,,
I've done a couple of Mindfulness courses on managing stress and managing pain and illness and they have really helped me recognise and change my negative thought patterns so that they don't control me. Your GP may be able to suggest something similar like ACT. The first step is to go and say what you're experiencing. It could also be the steroids that are causing the problem, some people do get that as they reduce the dose and it is a known possible side effect. When my family didn't understand me years ago I emailed them this and it helped change their attitude towards me
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