Does anyone feel well on their pmr journey I never feel 💯 if I’m not tired I’m dizzy or aching or spaced out. I’m on 11 mg going to 10 next week. I hate the way it screws up my head with dizzy spaced out as if I’m only half here. Anyone else. Just trying to understand this horrible intrusive disease.
How you feeling : Does anyone feel well on their... - PMRGCAuk
How you feeling
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Uglow
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Feel well? What is that? I ache a lot and have awful moods and digestion but am rarely tired. I am quite surprised by that considering my activity levels and poor sleep. Just gone to 6mg.
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Until my husband was ill I felt pretty good on pred - a damn sight better than the years I had PMR without pred! I generally have very little what would call real PMR pain - just the add-ons and they were well managed until Covid stopped the pain clinic input.
I feel quite good most of the time. A little stiffness in my legs and a bit of burning in my shoulders. I am tired at 8.30 pm so go to bed (or rather start getting read for bed which takes ages) Looking back I know I have improved a lot since before diagnosis so am thankful for that.
Ditto
I think I felt physically better on lower doses except the adrenal glands then decided to complain and I felt zonked out.
Snap. I still prefer the adrenal symptoms over the way I felt at higher doses though!
I think on reflection you may be right.
This might sound a bit trite but I’ve always tried to approach my illnesses like this. Sometimes I think the way we think about it can affect how we feel. So if you feel under attack from an “intrusive disease” as if it has come from outside you it makes one feel like a victim and powerless and disconnects you from the getting better process. If one sees it as the body in a state of distress, still running wildly and fearfully, one can try to feel kindness towards oneself like catching it and holding it and telling it you’re there. I think in a lot of us there is that child within that just needs a hug, you’re in it together.
11mg was still enough to make me feel rubbish. It gets tedious, hang in there.
I used to be very good at talking firmly but kindly to my body. Comment to stubbed toe 'Sorry that I did that but I got the message that you sent me with that pain and I won't do it again.' The pain would retreat. I had another go at it yesterday when I whacked my hand hard while tripping on my own trousers and nearly falling downstairs. No pain or bruising today.
Yes o get this will be decreasing tomorrow to 10 mg hoping that helps.
I think we need a post of the philosophical sayings of Snazzy 
I’m like you—I never feel well, hardly ever, and when I do (rarely), I overdo it and pay the price.
It’s a catch 22 feelOk oh let me have a little longer walk. Next day oh jeez why did I do it x
Yes, and I know all about pacing and about starting slow and building up, all which I am doing to the best of my ability. It’s just that some days I feel better for absolutely no reason and tackle some of the filth. And vice versa—some days I am worse for no reason…it’s a conundrum.
Human nature to want feel and do something "normal"......but boy do we pay the price!....
All I can say is that I have good days and bad days. Sometimes I can have a good morning and feel lousy by the afternoon and vice versa! I used to be very much in control of my life and my health and when I was diagnosed with Polymyalgia I started keeping a diary to track my activities, eating, exercise, alcohol intake etc etc. I could detect no patterns that made me feel better or worse other than stress and rest - and obviously the right dose of prednisolone. If I am able to do my own thing at my own pace then I am generally okay -ish!
Yes some mornings I can feel very spaced out and after trying to stay on my feet for an hour I can feel so spaced out that I have to go back to bed to rest. After about two hours resting I can get up and stay on my feet, do a little bit of housework and get a twenty minute (sometimes wobbly) walk in. The next day I can get up and feel quite good-ish. I cannot detect a pattern to this at all. I have had Polymyalgia now for around five years and I have given up trying to control it. Dorset Lady is right when she says that the disease has a complete mind of its own. I have now learned not to feel very downhearted when I am having a bad day because it is my experience that tomorrow I could feel a lot better.
Take good care of yourself. Be kind to yourself and listen to your body as best you can x
Thank you for that I needed to hear. My osteoporosis gives me so much aggro too. But there’s so many of us in the same boat. And it’s rocky. Sending strength to you. X
Sending you strength back at ya ❤! I wish that I didn't have this disease. I have lost my working life. My body is shaped like a lemon, my hair is curly and frizzy, even my teeth hurt sometimes 🙁!
I do try to focus on the fact that one day this disease might hate me so much that it just gets up and leaves me behind 👋! This is unlike other diseases out there that can affect some people in later life and the prognosis doesn't have the possibility of having any light at the end of the tunnel? It's easier said than done I know and I myself have lost touch with a lot of my old confident, hopeful self. This forum is just a godsend. I really do dread to think what would have happened to me if I hadn't found it. Take care x
"the prognosis doesn't have the possibility of having any light at the end of the tunnel"
It isn't that bad - about 90% get to zero pred eventually - just it takes rather longer than they will admit!
Sorry for any misunderstanding in my writing. I meant that some other diseases don't have the same light at the end of the tunnel that Polymyalgia has. Those are fantastic statistics! I hold onto the fact that 90% get to zero eventually. I have read on this forum that Polymyalgia can dissipate, or go into remission, around 5yrs and 9 months on average. Hopefully........... 😃 !
Thank you for always being there PMRpro. You knowledge and understanding of this disease helps so many of us x
When I was first diagnosed, I felt really unwell for quite some time but now 3yrs on, I'm genuinely feeling quite a lot better. This hasn't happened of it's own accord though. I spent a lot of time learning as much as I could about the condition and as much as I could about steroids and the other meds prescribed for me.
So now.....
- I eat a low carb diet to help maintain a healthy weight. (Being overweight can increase the likelihood of possibly developing other 'add-on' conditions such as diabetes or hypertension.)
- I eat at regular times each day and include lots of protein to help stave off hunger pangs.
- I exercise daily within my levels of capability to minimise muscle wastage, improve balance and help maintain good bone density.
- I take my meds as advised and all my steroids are gastro-resistant. I always take them with food or some yogurt to help further protect my digestive tract and stomach. (The only exception is my Alendronic Acid that must be taken once a week on waking and at least 30mins before any food. This is to maximise the amount absorbed.)
- I rest frequently and pace myself very carefully. So, when I wanted to attend a recent wedding I ensured that I had no commitments the week prior to or after the wedding so I could rest as and when required.
- I accepted (with enormous reluctance)that I wasn't able to work efficiently or to the best of my ability anymore and took full medical retirement. This was extremely hard and upsetting initially, but it did allow me to focus completely on my own health and well-being and now I'm beginning to see and enjoy the results!
- I have more realistic expectations as to what constitutes a 'good day' or a 'well day'. So whereas before, a good day would have to be pain-free, ache- free, active, energised, wide awake and feeling like I'd been pre-diagnosis (I wasn't achieving many 'good days!) now a 'good' or 'well' day is defined very differently..... A few twinges, waking early but after some actual sleep, being able to get out in the garden or meet for a cuppa with a friend, being able to iron a few items etc. That is what now constitutes a truly great day!
- I am very mindful of what I put on my hair and skin and only use natural and gentle products that both nourish and moisturise. I also rub nail oil into my nails to prevent them becoming dry and brittle.
-I've accepted that although there are things I can no longer do right now, there are lots of other new things that I can do instead....like taking up 'Stone Art'.... and I loveit!( I'll try and post a pic)
Don't get me wrong.....I don't experience permanently perfect days and I definitely have periods of being unwell but I have more good days than bad days now.
It's been hard work and still is but it's so worth it.
I'm only where I am now because of the knowledge, advice and support received from here though.
We can't cure the disease but there's much we can do to improve our health and well-being whilst on this journey.
-
Stone Art
I’m definitely trying to take a leaf out of your book I do research try to help myself. My blooming back osteoporosis holds me back. But it’s a long journey and I need to learn from you all. When people get a grip of the pmr I’m so glad coz it gives me hope. Thank you for a great post.
Haha! I'm not sure anyone truly has a grip on PMR/GCA, but I genuinely believe that however badly we're effected, there will always be something, however small, that we can do to improve things a little.....and it's those little wins that can make a big difference. My osteoporosis causes me to experience issues with my back too. If it's going to be uncomfortable it's usually always in the afternoon, so I'll always schedule my daily walk in the morning. Likewise, my energy diminishes as the day progresses, so anything more active, is again scheduled for the morning.
It's all about learning to 're-organise' and adapt. You'll eventually figure out what works for you Uglow, but it all takes time. As with everything PMR/GCA related...patience is the key!.
I love your stones. I have just spent this rainy day reminding myself why I used to love my ethnic jewellery collection and trying to discover more about it.
Yemeni rings
If anyone can't sleep tonight (😄😂) please could they try to get a good photo of the Lunar Eclipse and Super Flower Blood Moon? I think it will vanish behind the end of my terrace at that time of night.
We are forecast stormy night..so no go here!
Same here in my part of Essex unfortunately 😕
very glad I did not set alarm. Foul night, full cloud cover and blowing a hooley. Did anyone see the moon?
I saw a nice big full moon at about 12.30 but it was too early in the night to be red?
I looked out at 3.15 - nothing
It was heading into a direction where it would be hidden from me so I didn't try again.
No fast asleep, but we did have some fairly spectacular thunder and lightning ⚡️ as I went to bed around 10.30, 11 ish…
L
We must have a had a goody first thing this morning - didn't hear a thing!! It rained the other side of the road but not here as far as I know.
Thinking back, I never really felt consistently well until I got to around 8mg or lower and then the adrenal stuff reared its head - still preferable though.
Never worked out if it was related to the pred (I think it really affects my mental health) or the disease itself.
Fingers crossed it improves as you get lower like it did for me.
I hope so thanks
My initial my journey with PMR from Mid July till end of August 2021, with finally being diagnosed in September 2021 was terrible. I felt like a 100 year chap. Once on prednisolone and tapering slowly, I had slight discomfort but journey with PMR had been good. Down to 2.5mg of prednisolone with good blood results recently too.So for the time being journey of PMR is smooth without any hiccups.
I'm glad you mentioned feeling spaced out and half there - that's exactly how I feel now - brain fogged! I'm sure a lot of it is down to me being totally stressed out about everything really and maybe down to the steroids as well, but I really don't feel as though I'm anything like the person I was before all this - mentally or physically!! Totally depressing!
No never 100% but good enough to have a good quality of life. Have lots of ups and downs and strange pains occur. With the support on here a good quality of life 😊
Some aches and pains - on 6 mg - but compared to how I was when diagnosed 3 years plus ago feel much better - GP says ‘You have a condition- you will have some aches’ - hope you feel better as you reduce pred - remember to pace yourself
My first two years were rough but this last ten months on lower doses were much easier. I’m now approaching 2mg and dare I say it I feel almost normal!! Touch wood
Hi , I feel same one day feel good next day totally drained I was down to 4mg and I went up to 5 I feel sore all over and have nothing in the tank at all it’s like I’m pulling 100lbs weight behind me and I don’t know if I’m too low preds or if methotrexate is doing it . What a rollercoaster ride this it 🤦♀️😩
Could be adrenals stuttering, they have that effect…plus on a day you feel good you may do a little too much, and then next day you suffer….
I think I’m doing too much everyday like my normal life but also don’t know if I should take a break from methotrexate to see if I feel better x
How did you feel on the MTX at higher pred doses? If you felt OK on MTX until now, the indication is it is the change in the pred dose doing it - and that is normal at this level. If you were to go back up, all it will do is postpone dealing with it. At some point you have to sustain a lower dose of pred to prod the adrenals into life.
Snazzy has said she had to do less at this stage to get through it. I think it is a case of the expectation you will feel better at lower pred being dashed - and that doesn't help either,
Can’t help on the MTX, but if it’s adrenals it’s just a matter of very small tapers, pacing yourself better and patience! As I’ve said many a time took me as long to get from 10mg to zero as it did to get from 80mg to 10mg..
Uglow I'm so glad you asked this. I often feel as if I'm getting over flu with shaking legs and extreme tiredness. In my ignorance I thought that I would be feeling better by now after 6 months of pred, but sometimes I have to go back to bed with a hot water bottle. I'm on 12.5 mg pred, tried to reduce to 10 but pain and stiffness returned.
Hi, I’m generally tired all the time but better in the mornings than afternoons. Memory definitely worse in the afternoon probably as I’m tired and mid week usually my worst time. Hopefully it’ll improve.
You’ve described perfectly how I have felt. The dizziness and spaced out feeling has improved as the dose has got lower, thank goodness . That was the bit I found most difficult to deal with.
There are so many days i feel low, i am just getting over a huge flare yet again, this illness can make you feel so alone , i have a great family ,but i feel bad when they ask how i am, its always very nearly gloomy ! I try really hard to be positive but have a lot of other RA/OA problems that dont help. But when i read these posts it makes me mentally stronger again to keep on going ! So glad i found this group, fingers crossed we all find light at the end of the tunnel, with my best wishes Viv.🌷
I have a down period every day tests for no reason other than just feel overwhelmed then I usually move on til the next day. I’mNot depressed just fed up to my back teeth of it all. Good luck.
Know exactly how you feel, sometimes I feel like saying I’m fine when they ask, instead of sounding negative all the time, it gets you down
I do say I’m ok I don’t want everyone down with me. Although sometimes I want to I FEEL AWFUL I CANT FO THIS! but of course you do and move on to the next day ❤️
I feel dizzy, spaced out, and am very clumsy, I’m on 10, after a flare, hoping to try 9 in a week or so
Try 19.5 for couple days first maybe
Ok x
I’m 21 months into PMR and it is certainly a roller coaster ride. Like so many of you I’m experiencing the daily up and downs of this illness. With the invaluable advice and support from this forum I feel I’m beginning to handle it better but there’s always the worry at the back of my mind that things are going to take a turn for the worst. I’m a born worrier and my family tell me I’d be worried if I didn’t have something to worry about!
Have faith, non of us know how long our journey will be but with patience and quiet acceptance of what pmr throws at us we can hopefully & eventually get into remission. I’ve had all the awful effects of pmr mentioned here only improved by pacing & slowing down the tapering massively. I have felt well this last few months around 2mgm, I’m now on 1mgm having ploughed through the adrenal difficulties, not 100% yet but getting there.
I am 3 yes 6 months into PMR and at 7.5 mg pred. I also started Leflunomide in Sept 2021 and I do believe it got me lower than ever before as I always got stuck at the 10 mg mark. I live with the side effects of Leflunomide because of that achievement. Mainly diarrhea.
I do have dizzy days as many have mentioned but I do take additional meds for prostate issues so that may be causing some of the dizziness. Dutasteride and tamsulosin.
I have learned through this great forum how to manage my reduction and am pain free always (split my dose thanks again to this forum) 5 mg in the AM and 2.5 in the PM.
I go real slow .5 reduction every month or two based on blood work and how I am feeling. I do gentle yoga stretches a couple of times a week to keep flexible.
Maybe I will fit the mold for the 5 plus year finish line - we'll see.
Good luck to you all. ✌
I feel great at the moment but understand and sympathise with your problem. For months I suffered the symptoms you mention and looking back I can now see that the most obvious cause centred on my Pred dosage. However I can now see that the good ladies on this forum are responsible for this vast improvement. All the clinicians charged with my care couldn’t wait to get me off prednisolone as swiftly as possible without asking me how I felt on the subject. Now I follow my own program as suggested by those who seem to know best, those who have learned by their own experience and have striven to acquire knowledge to enable them to help others with this awful and difficult condition.
Good luck. X
I'm sometimes achy and dizzy., especially if I've been over doing things. The dizziness is getting better with lower Prednisolone (now down to 8 mg), the aches are getting a bit worse. Not a lot of pain, and not all day, just twinges. The thing is, I'm 76, and I don't have much idea what's normal at my age. It seems a bit unreasonable to expect to be pain free and full of bounce all the time. And I'm still riding my bike!
It's a battle isn't it, I wanted to respond to just give you support and know you are not alone. The expectations sometimes of the professionals who guide our care say this and say that, reduce our meds and then we start to suffer. We don't have easy choices and eking out a quality of life is our priority today and day by day. We can be told "You need to reduce this med as long term it will damage you" but when you don't think in terms of "Long Term" just I need to get through tomorrow it is meaningless. Take care and do what YOU need to do.
I've had a major flare the last few months - even with enough pred to sort the definitely PMR side of things, the extra bursitis/tendonitis has been awful, left hip and right achilles!! I don;t WANT to live years longer if it will be like it was at its worst ...
I reach out and understand, really. I think and believe that when and if you can, take the Duke Of Edenborough's philosophy that looking outside yourself leads to less unhappiness, I know he was crusty but there was much wisdom in the man. I get pain but have spent days managing it going outwards into the Derbyshire Dales, camping, whatever. What's the alternative?
The first two years after I was diagnosed with textbook PMR and put on pred I felt so good. Such a relief from how I felt before. I had chipmunk face, big dowagers hump, three chins etc but I just ignored it and felt so good I was able to holiday, walk, dance etc. Then at 3 mg the big flare came in after I had to go to the USA to look after my daughter who had breast cancer. I went back up to 10 but never felt well and of course the osteoarthritis was progressing all the time. But I got down to 3 again. Then a huge relapse hit me. Questions of GCA never quite resolved, diabetes 2, on 30 mg for a couple of months, slow taper because of lab results, stayed on 10 for 7 months, now tapering slowly. So six years later, no I never feel well, always in pain, always trying to tease out what is PMR or osteoarthritis. I think PMR mirrors your life events. You can’t control them and you can’t control PMR. I self prescribed a good dose of “put up with it “ this morning. It’s in the same class as “ Just get on with it”. 😊
I really do think that once you get a big flare it gets much harder - but I cannot work out why. There must be something!
Me too. I was so excited to go on a big dose thinking I would feel as good as the first time. But it took a lot longer to work and I never did get that real feel good factor again.
No, me neither. And we aren't alone. The absolute secret I'm sure is to creep down the dose and never let any sign of flare get established - and it can be done even when it takes longer than the 2 years. DL managed to never have a flare.
…but then my treatment wasn’t overseen by a over enthusiastic Rheumy, but initially by an ultra cautious GP (for first 18months), and then a very sensible experience one for remainder.
Which I think is the point 
Yes it is -but as we know too many medics don’t want to hear that!
Thank you. I have a rigid uninterested rheumatologist but an excellent GP who discusses with me whats the best move. All prescriptions on repeat so I never have to worry about running out. I have tapered 1/2 mg a month and am now on 9 but I don’t feel good so I think I am going to go back to 10 or maybe higher and then do the DSNS method. Thank you so much. I love this support group, the knowledgeable advice with a good dose of sense of humour.
Even DSNS won't get you lower if the dose is simply too low. Though sometimes the adrenal point can start at 10-ish - everyone is different. Then little and NOT often is a good strategy.
My suspicions proved right unfortunately. Blood test results showed ESR and CRP doubled. So GP put me up to 12.5. It’s a bit disheartening because this flare happened 18 months ago, and here I am back at 12.5. Oh well battle on.
At least you have a realistic and sensible GP!
Depends on the day really. When I was at 9mg of pred for two years for my PMR I felt great. Very active, no pain, almost forgot I had PMR. Since lowering my pred dose with the help of MTX, I am starting to feel pre-existing OA in right knee and my muscles just don’t seem to allow for as much activity (one week 4 of a 6-week taper down to 7.5mg of pred). Sometimes it’s multiple health woes that cause me to feel down and overwhelmed.
I’m kind of afraid of what’s coming next as I head into “adrenal territory” as I’ve never had any fatigue to speak of really, but found myself napping yesterday at 4pm while reading.
Whatever comes my way I’ll always feel supported by you fine folks. Knowing I’m not alone in my challenges is a blessing.
I share your pain and frustration with this condition and have very similar symptoms to yours, from what you describe. I try to take each day as it comes and enjoy the good days and rest/try not to do too much on the bad days. I too am about to go from 11 to 10,5 mg in 2 weeks. Am reducing in 0.5 mg amounts every 4 - 6 weeks as have had few flares with prior reductions lower than 13.5 mg. So far so good. Frustrating when the rheumatologist I see doesn't really listen and puts most symptoms down to menopause. If only men experienced the menopause.
Thank you for your post. Your words most closely describe the way I have been feeling.
I have recently raised my Predisolone to 15mg but still feel, dizzy, lightheaded and struggling to focus. I’m not in pain or stiff anymore but in many ways find the fatigue and lightheadedness harder to cope with.
Fatigue and dizziness are very common side effects of leflunomide -have you discussed with your doctor? There may be a different option.
I've had PMR 7 yrs and have never felt my normal self. Now that I'm down to 2 mg I feel the worst yet because adrenal glands not working.It's an up and down journey.
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