As I put recently diagnosed with PMR....Some days I feel as if I'm imagining everything .....as the pain has subsided.
Just feel so lethargic.
Are my eyes getting worse...
Why are the soles of my feet so painful....
Did I have that pain somewhere else yesterday.
Not seen a Dr yet....only telephone consultation and blood test...
F2F next week.
I am sure that I am not the only one who can relate to your anxiety and symptoms. I actually have thorough eye checks every few months. Overkill but they soothe me. I did develop GCA after having PMR for 4 years. It is relatively common to get both diseases.I used to get burning feet in bed at night, but since I gave up the odd glass of wine this has disappeared. It was probably Neuropathy. I have had many weird and wonderful symptoms over the 8 year period that I have had these diseases. I recommend you stick with this site. It has been a life saver, sensible advice, real expertise and comfort. I suggest you do this too, not instead of a doctor but to become an intelligent patient. It puts the power back on your hands.
I've only had this for 6 wks....If I hadn't have suggested to my first Dr who gave me exercises to do as he thought I'd pulled muscle in my back....I would have become bed ridden.... I find it hard that a stupid catalogue of trips and a keep fit session caused my body to turn on itself.
The symptoms I have don't seem serious now....but the pain I suffered and I lost half stone in cpl weeks.... not being able to move....
I keep thinking it's me not an illness.
I will stay with the grp..... going to book eye test tomorrow and stop doubting myself.
Thank you so much for responding...
It is definitely something and my money is on PMR. Nobody wants this rotten disease or the annoyance of becoming dependent on Steroids, but PMR and GCA demand to be treated with respect and if the pills are working, this is a good thing. Have a browse on FAQs accessed on this page and become excellent at managing your disease. People are here to advise you at every turn.
Hi. Your journey sounds exactly the same as mine. Fit healthy very active then BANG! Dr diagnosed back too but when i couldn't get out of bed and then passed out due to strong painkillers hed prescribed i did some googling myself. and told him! After 8wks of doing nothing i gradually got back to exercise and some form of normality. Its not all doom and gloom....just being sensible and listening to your body. I'm on steroid reducing now and still get odd aches etc. Its not in your imagination for sure. Some days are def easier than others. Just keep movin and groovin!!!
Thank you so much...
The mantra for PMR is rest, rest, rest. PMR is life changing.
Hi there,
You're newly diagnosed and still in the throes of trying to process what this diagnosis will mean for you and how you'll be affected. On top of that is all the anxiety and uncertainty around steroid use.
I think most people on here would tell you they've experienced exactly the same concerns, including myself. Sometimes it can seem that you're waking up every day with a new worry or concern and it can feel quite overwhelming.
I've been living with PMR for almost 5yrs now and the best advice I feel I can offer people, is to learn as much as you can about both the condition and the steroids. Knowledge is power and therefore enables you to make more informed decisions that are right for you.
As SJ has already indicated, this forum is one of the best sources of trustworthy advice, help & support, and there's almost always someone who'll have experienced similar to yourself and will be able to advise you.
Adjusting to life with PMR & steroids can take a little while, but it often isn't as scary as you might think. Yes there are challenges, but I haven't yet experienced anything that I couldn't minimise the risk of developing, find a way to ease or in some cases even eradicate.
Living with PMR will undoubtedly mean there will be tasks and activities that you can no longer do (for a while anyway) but this just motivated me further to seek out & pursue new past-times and activities that I could still do! It's actually opened up a whole new world I'd never have discovered otherwise.
I know it won't always be easy, but try to turn a negative into a positive whenever you can.
I hope you don't feel too despondent because there's still much to be hopeful about, even on your worst 'down day'.... and you will get those days.
For most people, PMR will eventually diminish, but it will take time and patience, and its important to really understand that or you'll just set yourself up for disappointment.
Take one day at a time because as I always say, "Slow & steady wins the day!"
You will have challenging days but it will get easier as you gain more knowledge and therefore more confidence in how to deal with everything.
In the meantime, this forum and all the wonderful, knowledgeable people that have helped & educated me, are always here to advise & support you too.
Hi, thank you for your very sensible advice.... trouble is I'm a doer find it very hard to not!My husband is an absolute gem and is very supportive...
I think it's the not knowing...
My eyes are they getting worse??
Are my feet going to get better??
Do I feel tired or am I making it up??
That sort of question keeps popping into my head
Because I'm talking the steroids I keep blaming them for everything....
That's why I wanted to chat with people to see how they mng..
Thank you for your support...
I understand completely. I've definitely had the same sort of questions over the past number of years. As time goes on I've found that almost all of the issues that have popped up have been temporary and other concerns get sorted eventually.It's definitely very frustrating at times.
Hi, and welcome,
Have a look at this - might give some answers -
healthunlocked.com/pmrgcauk...
And feeling as you do is quite natural… and it’s not your fault you have PMR, and it is an illness… the sooner you can come to terms with that the better you will cope. Not always easy I know, but true. It can be overwhelming at the outset, but we can and will help you through it.
PS - have just read a reply on another post - what dose did you start at? For how long? And did that give full relief but pains have returned since you reduced to 15mg?
As a fellow newbie (Sept 2023) I understand. I had never heard of PMR and it was bewildering. So much to take in, but I have been so grateful for the knowledge and support from this forum. I had minimal advice from my GPs. My most helpful consultation was a Face2face with a nurse practitioner, who I felt really listened and gave some good advice. Don’t try and rush things. Best wishes.
It bothers me a bit that you said you had lost weight before diagnosis but you blamed it on inactivity. Inactivity is more likely to result in weight gain and I would be inclined to blame the illness. Weight loss like you mention is more likely to accompany GCA: PMR can be a precursor to that and you are also complaining of eye problems. I think a closer examination is called for.
No....lost the weight whilst I was in pain constantly.... couldn't eat felt nauseous if I thought of food..... probably the way I explained...I'm booking an eye exam today....
The site helps so much...you just don't feel like a moaning Minnie....
But you do realise you symptoms are real not imaginary...
Thank you ..
Welcome to the group, very knowledgeable people here. It is normal to have all those worries and sometimes "new" symptoms that increase the anxiety do pop up, and make one wonder and worry..all I can advise is take one day at a time and remember that we all can present symptoms and react to the steroids differently.
This site helps so much, and allows one be armed with knowledge for the doctors that don't know as much. My Dr. was dead wrong about 2 things regarding this PMR...and reading this site, he has a lot of company.
If you are on Prednisone several things might be getting worse even if your pain is subsiding. Be sure to have eyes checked regularly - my eye pressure went up and eventually my liver was affected. Am hoping to be off Prednisone (steroid) soon. I have PMR and CGA.
I've booked for an eye test on Tuesday...The Dr said my liver function wasn't right....I've had blood tests yesterday...so waiting for the results....
Drop down to 10mg of Prednisolone next week...so wait to see how that affects me.....
If you’ve only been diagnosed 6 weeks, then a reduction to 10mg next week is mighty quick in our books… so just be aware it might not be that easy. Especially if you are not pain free- or almost pain free now…
Is that 3weeks at 15mg, then 3 weeks at 12.5mg? Might be a recognised taper, but doesn’t suit all….
2wks at 20....2wks at 15...then I will see Dr .
To be honest 2 weeks at any dose is not long enough to know that dose is sufficient before you drop to a lower one. Particularly the initial dose - 3 weeks absolute minimum -4 weeks better.
Then 20 to 15 too big a drop -25%, and 15 to 10 is 33% -bonkers.
Can be okay initially in GCA when we are talking much higher numbers, I was on 80mg for 2 weeks, but then 60mg for 8 weeks.
Sounds as if they are just using a standard pred taper for other things, 15mg starting dose and stop after 6 weeks. It's what I was given originally - though to be fair to him, not because he thought I had PMR and that was how to go about it.
If I can ask, I am curious to know how you tapered after the 60 mg. What worked for you?
And Happy Mothering Day to all. I've enjoyed hearing about this special day!
No lovely....I started at 20mg...After 2 weeks it went down to 15mg.
2 weeks down to 10mg.
But that's when I started to suffer again....
Back to lethargy..... discomfort in hips and shoulders....
So Dr told me in 2 weeks to drop by 1mg and not 5 as he originally said ..
Feel very drained all the time ..
But unlike before, I can force myself to do things ..
Hope this explains.
P.S I had a lovely Mother's Day...
It does explain, and I sure hope tapering more slowly brings you the relief you deserve.
As bit complicated have sent by Chat
Liver enzymes can often be raised in PMR - a lot of doctors don't know that.
As DL says, that may be a taper that appears in the literature - but it may not work for you.
Hope you can reduce - I am down to 3 mg after being on 60 mg initially. My SED rate is staying down. Best of good wishes as you go forward.
Thank you for filling in your profile, including approximate age. PMR is most common in women around the age of 70, so if your pattern of pain fits, and your CRP and/or ESR are raised, the diagnosis is a walkover. The real test will be whether you respond rapidly to steroids, because that would confirm that you are suffering from an autoimmune disorder. Good Luck!
I did feel much better in a few days ..However it didn't last...
I am in nothing like I was pain wise...
Just feel so ill all the time....
Lethargic almost all the time.
I can't sleep ......
I go to bed at 10.45....but cannot drop off
Walking around at 2am..
Pain - and lack of activity during the day - keeps me awake, too. I listen to music or podcasts with one ear-bud in. That usually helps me doze off, until the next time I wake up, sore and stiff. I'm so weak, I struggle to turn over; even moving the duvet and pillow is hard. I don't get up until 11am, after the muscle stiffness eases off a bit. It's a nightmare.
Hi, I was like that at the beginning and found it so hard to even get out of bed.....But I'm so glad to say the steroids have taken that awful pain and weakness away....
I suffer stiffness until lunchtime but lethargy really all day....
Blood results today have shown white cells 1 type are way over the count and 2nd type are way under...
Seeing Dr on Thursday so will learn more then...
I've been on and off prednisolone three times during the last 5 years. The higher the dose, the milder the symptoms, and the better my quality of life. Even at 30mg, however, I still had to pace myself, and sometimes felt weak as a lamb. Sometimes it's hard to deduce what is a residual symptom and what is a side effect of the medication.
My symptoms are a strange mix of classic PMR and confounding clues; but the fact they respond so well to steroids means it's definitely an autoimmune disease. I've learnt that doctors are not very good at teasing out one from another, especially as the overlapping autoimmune disorders straddle several specialities.
I've just bought the Kate Gilbert book.... and after reading what different ppl have written...I've decided to do a food diary... But would I be affected by food whilst I'm on steroids??I think I may ask that one to the group... I really feel for you.....
My insomnia is chronic at the mo... I also am so lethargic.....but I'm not in pain except for a constant headache...so I genuinely feel for you....
I hated that pain...it takes away almost every bit of strength to walk across the room....
I don't know how you can sound so positive....
I think what may appear as positivity is actually stubbornness. The problems with my immune system have been lifelong, so working, exercising, socialising and even taking holidays has always been a struggle. Now I'm almost exclusively bedbound/housebound, fighting for a diagnosis and treatment is all I have left.
Back in early 2019, when (in desperation) I convinced my bemused GP to try me on oral steroids, I decided to do an exclusion diet before taking the first dose. By six months later, I'd found nothing that changed my symptoms. So I returned to my usual, healthy, balanced diet and started on 20mg/d of prednisolone. The improvement was amazing, but not 100%. Later I convinced my GP to increase the dose to 30mg/d, and the improvement was even greater, but still not 100%. That dose-response relationship was yet more evidence that my PMR is atypical.
As a retired scientist, performing experiments, applying good observational skills, collecting clues and following them up, all helps to fend off the despair. How long for, time will tell.
When you think of ppl who suffer....you always think of oh my how do they cope.....But what is the alternative?
My lovely friend has turned up today and I've had 3 GnT's..... I've stopped drinking anything whilst suffering...
But oh my mood certainly has been lifted even tho I'm pooped now.
So I take all the info on this site and try to adapt what I can to me...
I'm not going to bother with a food diary as I don't think it will make a difference....
I will be aware of when I taper my meds on Wednesday that I could have a backlash and will document that for the Dr......
I will document more and like you do look for clues.....
Thank you for chatting.....
That's so true! Coping becomes second nature and you focus on what you can do, not on what you can't.
About 10 years ago, I was driving along with Radio 4 on the radio. Inside Health came on, including a piece about the newly-discovered Periodic Fever Syndromes. I listened to a guy explain how he, his mother, and then his daughter pushed on, regardless of the symptoms that doctors could not explain. Even though I've never suffered their disease, I knew what that felt like, so I pulled over and had a good cry.
I've tried to explain this to multiple doctors, but they almost always assume you've been on Dr Google too much and think you've got every illness going!
The real difficulty comes when you are bedbound most of the time, and even sitting upright is exhausting. You can't even take a holiday, unless it involves being driven a few miles to another bed inside another four walls. That is very rapidly unbearable.
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