My Racing mind upon waking: It seems like the... - PMRGCAuk


13,904 members25,246 posts

My Racing mind upon waking

3daysinjuly profile image

It seems like the second I wake up my mind starts taking over and I can’t shut the thoughts down. I’m a few months in so I am guessing it must be the pred. Going back to sleep is impossible so I just get up, take the pred, and sleep some later. I hate living like this and I wonder if talking therapy would be something useful to try. The board here is great but maybe a mental health professional could be of value. Depression is not something I ever had until now and it is not pleasant.

30 Replies

What dose of pred are you on? It normally gets better on reducing.

3daysinjuly profile image
3daysinjuly in reply to piglette

Just went down from 15 to 13.5

piglette profile image
piglette in reply to 3daysinjuly

Should slowly improve, good luck.

PMRpro profile image

Learning to go with the flow helps - worrying about it just makes it worse...

3daysinjuly profile image
3daysinjuly in reply to PMRpro

You’re right. Just never been one of my strong points.

Hi I think you have anxiety rather than depression. I believe,you may benefit from some sessions with a psychologist that teaches nindfulness and CBT. Wishing you all the best. Lola

Thanks, Lola

Yes I was thinking that too ,anxiety sounds more like it ,its difficult to accept but your life will change with this .

This happens a lot to me. I usually get up and find something to occupy my mind, even if it's just TV. Remember the forum is here 24/7 so there may be someone to 'talk' to. I now quite enjoy the quiet of the night however it can get cold in the winter.

I am now down to 9.5 mg and I find it helps to take it in the evening, less likely to wake up. It was leg pain that woke me but my mind was always racing.

Make sure to get some sleep during the day while you are going through this stage just a power nap sometimes.

Best not to worry to much just accept it as part of the journey.

3daysinjuly profile image
3daysinjuly in reply to scats

Thanks, scats.

I am a great believer in talking therapy. I have also joined mindfulness groups - it does stop the negative chatter, I promise. I hate anxiety and depression more than the pain and stiffness to be honest,

Yes, Jane, I do, too. I would take the pain over the things that go on in my mind. I don’t know much about mindfulness. But I would like a therapist to talk to. I internalize and always have. Not good. The only one I really talk to is my daughter but I feel terrible about burdening her with my pains.

Hidden profile image


Your daughter won't think that you are a burden, she will be pleased that you are opening up to her. Love and hugs Lynne xxxx

Yes, Lynne, that is exactly what she always tells me. Thank you for your kind thoughts.

I had a therapist prior to PMR and she was a great help and resource, especially in the early days. It felt good to get all those worries out of my head, and it was easier to be totally honest with her without worry of judgement. As supportive as my family and friends are, I am more likely to hold back as not to cause them too much concern. A professional therapist is also an expert and well versed in an array of therapeutic techniques to help meet the unique identified needs of their clients.

I only experienced restlessness and my mind racing when on first two initial doses, but I was also feeling somewhat panicked as well back then. Pred can cause sleeplessness so I’ve read on here, and I believe PMR can cause depression (as if the pain, stiffness, and potential side effects aren’t enough). This condition takes a mental, as well as physical toll. No shame in getting help if you need it, whether it be talking therapy, medication (pharmaceutical or otherwise).

I’m also big on support groups, and this forum serves to help me greatly. What I’m also seeking though is someone I can talk to, preferably organically, who also has PMR, who “gets it”. Who is ok with discussing our woes and celebrations as we heal. I know that I can’t do this alone.

Hope you get the help you need, good for you for recognizing this, it’s shows your dedication to your self care. We are here if you need us!

GlynisE profile image
GlynisE in reply to PMRCanada

Depression Is listed on the NHS website as a symptom of PMR. I normally have no problem sleeping so don’t think it is the prednisone. But anxiety is awful I would suggest trying CBD oil.

Hidden profile image
Hidden in reply to GlynisE

Hi glynisE..this is an old post so may not get seen by many people. Just check how long ago posts are made otherwise no one can see your useful contributions.🌻

GlynisE profile image
GlynisE in reply to Hidden

Why do they pop up then in your email to me?

Hidden profile image
Hidden in reply to GlynisE

I don't know. Is it this actually message that pops up or have you scrolled down to related posts? Perhaps check your setting in your profile to check you are receiving just what you need. If it carries on please report to HUnlocked help desk. It would be a shame to miss your comments. 🌻

PMRpro profile image
PMRproAmbassador in reply to GlynisE

Not "our" email, they are generated automatically. I have had a suspicion there is a gremlin but HU don't agree. They didn't agree when someone had her settings changed somehow - until I and a load of others all complained of the same problem.

When it happens could you please complain, with the email you got notifying you, to the Support Centre.

My earlier higher dosage I was in the same boat. My primary prescribed levero (lexero). Worked wonders

Yes I get that sometimes, it’s really annoying. I’ve reduced to 11 now so get it less frequently. I listen to a radio play and then often drift off again. I always stay in bed.

Hi, I have been like that all my life, even before the Pred. I don't get up I rest my body and read or listen to the radio, I don't get much reading for pleasure time, so I have learned to welcome the quiet time in the night. I am tired in the morning whether I sleep all night or not so again have had to make strategies to deal with that. I have learned the worst thing for sudden waking is to worry about it.

I’m so wired that sleep is impossible even though I take medication for sleeping.... this is week 3 for me... I’m finding my eating is out of control.... very unhappy with this new me

I picked up this tip on the radio a few years ago. A professor recommended that if you get too many thoughts or 'bad' thoughts going through your mind, just keep repeating the word "the" "the" "the". It really works, and clears your mind. Just keep repeating "the" when necessary.

I can think of better words!

Harbel profile image
Harbel in reply to Constance13

On the other hand if you are looking for some article that works - it is the definite one!

Constance13 profile image
Constance13 in reply to Harbel

Another professor said: “Choose a word, your word, and repeat that”. I chose “tranquil” a friend chose “flowing” another chose “mind full ness” (words separated)............

Telian profile image
Telian in reply to Constance13

I was told by a counsellor to always tell myself 'it will be alright' - seems to work - even if it's confusion setting in it takes your mind off the original issue...

I'm like that at night.

During the day I get songs in my head and it's kind of fun

You may also like...