Scared: I'm too tired and upset at the moment. But... - PMRGCAuk

PMRGCAuk

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Scared

Quayside1 profile image
27 Replies

I'm too tired and upset at the moment. But its good to know I have somewhere I can talk about this.

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Quayside1 profile image
Quayside1
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27 Replies
jinasc profile image
jinasc

Can you tell us what is scaring you..........we just might be able to help allay those fears.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi. Welcome, and when you feel up to it come back and tell us a bit about yourself.

SheffieldJane profile image
SheffieldJane

A lot of us have felt that many, many times. We are here for you.

Give yourself time to gather your thoughts and feelings then come and chat with us.

Whippetygirl profile image
Whippetygirl

I am new on this PMR journey and without this forum I would be totally lost, their help and understanding is invaluable. We just have to take each day at a time and be thankful to get through it.

teesher profile image
teesher

Hi Quayside1, we've all been where you are and this forum is a great big warm bunch who can lift you up. It's reassuring, helpful and fun. Keep reading and post when you feel ready.

Yellowbluebell profile image
Yellowbluebell

It wasnt that many months ago I felt like you. All the people who have already responded to you did exactly the same for me. No matter how scared and upset you are we are always here. Keep in touch with us please. Deb

PMRpro profile image
PMRproAmbassador

When you are ready - we are here listening.

Mary63 profile image
Mary63

Please try and explain how you are feeling and what your worries are. There is so much experience and empathy on this forum, you will find some help.

Blearyeyed profile image
Blearyeyed

We all have times when we feel sick and tired of feeling sick and tired , and we all have moments when we are anxious because we are ill ( rather than ill because we are anxious) , no matter how long we have our condition.

That's why it's good to come here and talk with your Faraway Friends who really understand what you are feeling and don't care or judge they way you need to say it.

Please feel confident to come and share with us very soon , and we will try and give you some help , kind words and advice with a big electric hug to help you cope along the way.

Take care and write soon , Bee x

Louisa1840 profile image
Louisa1840

Feel the love, warmth and prayers of all of us reaching out to you. I feel quite teary just reading all of the above. We are all here for you. We all have our days when we are scared, sick and tired. You are not alone.

jinasc profile image
jinasc

Quayside are you near a river in the UK?

Welcome Quayside 🌷

When you feel up to it, please let us know & if there’s any advice we can offer please let us know.

Kind Regards

MrsN

Waterfeature profile image
Waterfeature

Hi, like you I was scared and worried but spoke to my doctor, she told me Polymyalgia is not life shortening or life threatening also sometimes it can burn itself out within 18 months to 2 years. After six months I reduced my prednisone from 12mg to 10 now on 5. Side effects have all gone so there is hope. Good luck

Quayside1 profile image
Quayside1 in reply to Waterfeature

Can it burn itself out without steroid?

I'm sitting in my car waiting for app. with GP don't want to take steroid, I would like her to refer me to hospital

.

in reply to Quayside1

Is it pmr or GCA they are investigating?

jinasc profile image
jinasc in reply to Quayside1

Normally, PMR is treated in Primary Care...........so you may have difficulty in getting your GP to refer you to Secondary care, unless there are complications.

One thing, do not let your fear of steroid stop you from taking them, untreated PMR can and does sometimes lead to GCA and you never, ever want to run that risk and you won't have a choice about pred either.

Let us know how you get on please.

Waterfeature profile image
Waterfeature in reply to Quayside1

I couldn’t function without steroids I was in too much pain. I struggled to get out of bed and couldn’t dress myself so had no choice

Yellowbluebell profile image
Yellowbluebell in reply to Quayside1

Even if you get referred to hospital the treatment is the same, steroids. We hear do much against prednisolone on this site but most of us would have no life to speak of without them and for people with GCA the only thing to prevent possible sight loss is pred.

PMRpro profile image
PMRproAmbassador in reply to Quayside1

It can yes - but you may have a very long and painful wait. I had PMR without pred for 5 years - not out of choice but because t wasn't diagnosed. I still have PMR after 15 years altogether and I would have no life without pred. It really isn't anything to be afraid of.

The problem is if the inflammation remains untreated that you will suffer more & will find it very difficult to manage due to the stiffness in your muscles.

Go in & see your GP & see what he/she has to say & go from there.

Suet3942 profile image
Suet3942

Don’t be scared. Lots of kind people on here to guide you in the right direction. 🌸

MartiFL profile image
MartiFL

You will get almost immediate relief from the pain after a couple of days of taking steroids.

You’ll wonder why you didn’t get them sooner!

Some people have only a few side effects. Some aren’t so lucky. I have almost none and feel fairly normal.

Diagnosed 04/2018. Started at 10mg. Now at 5.5. Life is pretty good.

I think I would have spent my life in a wheelchair (or in bed) without steroids.

We’re here for you. Ask away!

Jackoh profile image
Jackoh

Did you get to see your doctor?

OutdoorsyGal profile image
OutdoorsyGal

I think we are all initially horrified at the prospect of taking prednisone, but for some of us, side-effects are a non-issue, and the relief from pain and stiffness is undeniable and most welcome.

If you don’t have GCA, the initial dose will be relatively modest, and the initial taper can be relatively rapid. Below 10mg, however, tapering slows down to allow adrenal function to resume. Within the first few weeks, steroids can be stopped abruptly, but after about 3 weeks adrenal function is compromised and tapering is a must.

The relief from pain and stiffness almost every PMR patient gets from prednisone tends to overcome our initial fear of the medicine.

Welcome to the club, quayside. We didn’t ask to join, but the other members are great, and the info is free and often better-informed than what we hear from our doctors.

animalactivist profile image
animalactivist

I too fealt this way. Four years on my pmr is gone

SlackerPMRmom profile image
SlackerPMRmom

Oh! My! I got really teary eyed reading all these posts. What a fantastic and caring group!!! I feel like we are all in safe and good hands when we come here to read and chat! Very calming. Thanks everyone!!❤️❤️🐾🐾❤️❤️

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