Morning (and all day) stiffness

[HeronNS]

You'd think, after all this time, that I'd be an expert on this disease. However I think I've learned a new thing. It seems from what Dr Google says that morning stiffness is a symptom of osteoarthritis. Fair enough. I honestly can't remember when I haven't had morning stiffness, at least not since childhood. I've also assumed that the all day stiffness I have is a manifestation of OA as it it's not like the debilitating pain of full-blown PMR. This stiffness did go away during early days on pred - all my aches and pains vanished, and only some of them have returned. But Dr Google implies that only prolonged periods of rest, like sleeping, will lead to OA stiffness, which resolves within half an hour.

So the question is: should I be concerned about this ongoing stiffness? I didn't call PMR pain stiffness - it was restriction of range of motion caused by pain. Which for months I thought was caused by lack of fitness and kept driving myself to exercise more, which of course didn't help at all.

For a long time it seemed very clear to me what was PMR and what was OA, but now I wonder if some of what I've called OA is really PMR? Trouble is, I can't remember what life was like before PMR. I think it took so long to get diagnosed partly because as I sickened it was a seamless development of a condition I've had most of my adult life.

[Hidden]

It's always a conundrum when there are "overlapping" conditions. The stiffness I experience is part fibro part OA and part nerve damage. But PMR must have been a part of it as pred helped the worst stiffness which was most often experienced when I had walked, driven home then tried to get out of the car. So after "exercise" then short rest & in the morning. There was/is pain with the stiffness. The only way to describe it is the Frankenstein walk. Is that how you walk/ed 😂😂. Sorry. I just realised it was a daft question ...stiffness equalled a severe lack of mobility and significant pain. Pred made it better but if I overdo things my legs refuse to move effectively thereafter.

[HeronNS in reply to Hidden]

Thanks for your comments. I have over all stiffness, not confined to the joints where I know I have OA. I'm really afraid it's the PMR stirring again, after feeling so well while I was on holiday and for a few weeks before that. I haven't tapered lately. Well, took one reduced dose (2 mg from 2.5) since returning from holiday and that was several days ago. I'm beginning to think it's something to do with my home as I usually feel pretty well while I'm away (and don't have to think about things like preparing meals, shopping, cleaning....) even when I have to walk for miles and be active for hours and sometimes haul heavy luggage around.

I think I'm walking all right, but my front steps, which seemed to shrink back to normal last year, have grown back into a small mountain.

[Hidden in reply to HeronNS]

Oh dear. Even that 0.5mg can make a big difference as you know. Perhaps just stay at 2.5mg until it all settled. You obviously had the feelgood factor and coming back to reality has bumped you. Is it about a week you have been home? Maybe it's just caught up with you. During family visits I seem to keep going but I am a wreck the following week. Keeping my fingers crossed. 🌻

[HeronNS in reply to Hidden]

I was at 1.5 last year! This is a bit annoying because I don't actually know if it's PMR in which case I should just hang in there and wait it out, or "only" OA in which case I should be able to continue tapering. Certainly the OA is worse - the knee of the leg which was broken back in '14 is stiffening up, and I was told at the time that the small amount of OA visible in the x-rays would get worse because of the break, and this seems to be the case. But I only notice it when doing one of my physio exercises.

[Hidden in reply to HeronNS]

Ease off exercises a bit. I have had stretches I have been doing for fibro/back pain/ sciatica but have found they make PMR muscle soreness worse. This has been most confusing. I still use the band I was advised to get to stretch legs out. I think at such low doses the benefit to OA might not be so pronounced but muscle soreness or stiffness due to PMR may be improved. I presume you have hit the painkillers just to see. The business with the steps seems to lean towards PMR but you know your PMR better than anyone. It is disappointing when you have been so low before. Perhaps experimentation required?🌻

[HeronNS in reply to Hidden]

One of my cousins had a diagnosis of fibromyalgia, oddly enough around the time I was sickening with PMR but as yet undiagnosed. When she learned it was to do with perception of pain she decided she would not allow that to happen and cured herself! I recently saw her and she says she is fine! The other cousin, the one with RA, asked me how my joints were, and seemed surprised (and sympathetic) when I explained it wasn't joints but inflammation of the small blood vessels throughout the body.

Maybe you're right. I hadn't wanted to try a pred challenge, but maybe taking a couple of something else to see if they help will answer the question. Thanks for the idea....

[Hidden in reply to HeronNS]

It is brains perception too...not just psychological. Some people have very short active period of fibro. Believe me I tried for 5 years to refuse to let it exist. Didn't work😂

Like PMR some people are lucky and get through it within a couple of years....others not so lucky.

[HeronNS in reply to Hidden]

My cousin is an extremely determined personality. I didn't get details of what she did but I don't think it was as simple as denial. I'll ask her sometime.

[PMRpro Ambassador in reply to HeronNS]

It may, of course, not have been fibro:

medscape.com/viewarticle/89...

[Jamie345 in reply to Hidden]

I have difficulty walking and that's a good description the Frankenstein walk! But it's always painful sometimes it seams to be in both hips and I do a few tasks then have to sit this is how it continues all day, in the early morning it's in the legs, I had the shakes yesterday very strong indeed, I kept feeling really unwell, then ok, this again was all day! But I did notice in the evening my urine had a strong odour these keep occurring through out this illness, every day seams different! I can't just go to bed it does not help I wish I could sleep the bad days away, is anyone feeling like me?

[Hidden in reply to Jamie345]

Definitely know the feeling of wanting to sleep the bad days away. And on the worst days I must confess I have taken my sleeping pills early and tried to sleep through. The extra sleep helps anyway.

I can tell when I need to stop recuction as Frankenstein returns....with the mummy!!

[Hidden in reply to Jamie345]

Just wondered what dose of pred you are at jamie345? I see you are about 12months in and wondered if you were at right dose for symptoms.

[Jamie345 in reply to Hidden]

I'm tapering down was on 40mg so my rheumy has slowly taking me down each time I do I feel rotten then it goes and I carry on but I'm on 12/half for around 6 weeks, now and seams to be ok I am staying on that dosage till I see him in July and I presume he will put me on a lower dose again, ofcourse I want to get down to single figures hopefully by the end of summer Autumn, I think I had these conditions well before I eventually went to doctors as expect it being arthritis but ofcourse it got worse.

[Hidden in reply to Jamie345]

That's still pretty fast taper. 1 year. In for GCA. I am 2 years in an only down to 8mg from 15mg for PMR alone like many on here. Just saying the infkanmation will most likely be active still so I would expect pred not to be so effective at lower dose. Hope you find some relief.

[Lin6075 in reply to Jamie345]

I am feeling just like you. The not knowing what the day is going to bring is just maddening. I never got the really good relief from the pred. and methotrexate but it is better to be on them then not.

[PMRpro Ambassador in reply to Lin6075]

If you don't get really good relief from pred then there MUST be a question about the diagnosis.

[PMRpro Ambassador in reply to Jamie345]

I've had urinary episodes like that, usually coinciding with feeling unwell. I have come to the conclusion they really are UTIs that clear to become subclinical and then recur. How to persuade a doctor of that seems a problem though.

[DorsetLady PMRGCAuk volunteer]

Hi HeronNS,

Ahh yes the OA stiffness - mine is definitely first thing in the morning, and if I’ve been sitting in one position for too long! My left shoulder is a nightmare first thing however I’ve led during the night - I always sleep on side, can’t do sleeping on back! Strangely my knees seem okay first thing, but they do seize up if I’ve been sitting too long - I try and get up regularly, but sometimes you get engrossed and time passes by!

If you are getting stiffness that doesn’t seem to correlate to a period of inactivity, then I’d be inclined to up the Pred a little. I do appreciate it’s not really want you want to do, but as we “ancient ones” are always saying, why be in unnecessary pain when an extra mg (or two) would resolve it? Surely it’s worth a trial period!

Take care.

[Jamie345 in reply to DorsetLady]

Hi Dorset lady can you tell me why these shakes I get are some days worse than ever? Inner tremors as well not just my hands? I'm only into my first year with poly /GCA last May? But took till December 2017 for a proper diagnoses, just been told I have osteoporosis in my spine, lost height as well, does this mean I will one day not be able to walk? So many questions I'm sorry to bug you all again I don't know anyone who has these conditions so heavily rely on this web site. Thanks team for advance help

[DorsetLady PMRGCAuk volunteer in reply to Jamie345]

Hi,

Can’t help on the shakes etc. If you are worried about osteoporosis, then it might be worth looking at this site -

nos.org.uk

Or this -

healthunlocked.com/bonehealth

[Hidden in reply to Jamie345]

The shakes or trembles as I call them are known to me. They don't last long but some days I feel them deep inside to outside. My friend who was a nurse for 50plus years and specialised in older care says it was common for some people on some meds. A kind of Drug induced Parkinson tremor.

[Hidden in reply to Hidden]

Not Parkinson's though

[markbenjamin57]

Dear HeronNS

Thanks for posting such an interesting and incisive '64-thousand Dollar' question. I'm sure many of Us Lot will relate in terms of trying to make some sense of Cause and Effect with PMR and / or GCA - and in conjunction with / at the same time as coping with other health conditions - and, of course, the ageing process in itself. Bah, Humbug, but Hey Ho!

I can relate 100% to your concerns about 'on-going' stiffness and the possible (maybe historical?) reasons for it - and also your comment about not being able to remember 'Life before PMR'. Yes: ours, amongst many others, is an illness that challenges us not only physically, but psychologically too.

This is just a quick-ish reply but I'll be following your post and responses to it with great interest. I'll chuck-in my best efforts soon to contribute to the discussion in a positive way.

In the meantime: all I can say to all of Us Lot is: try to keep smiling on the often uncertain and unpredictable PMR / GCA Journey, even if we can't make sense of why it happened or what the future brings. In the absence of some kind of explanation for Why and How, learning to Cope with these Uncertainties might just help in the Survival process?

As you say, 'Seamless' - and a very apt description of the process of Life Change quite often? ...

More thoughts to follow...

'Uncle' MB

[Jamie345]

Should I ask my GP to send me to physio I'm so unsure with conflicting views to help this stiffness and does anyone else keep getting water infections ever so often, by the time I take the sample they say it's clear?

[DorsetLady PMRGCAuk volunteer in reply to Jamie345]

Hi,

there is a lot of discussion on here regarding UTIs - unfortunately it’s seems to be a common side effect of Pred.

[piglette in reply to Jamie345]

Hi Jamie, I have been to several physios who really have not helped, they wired me up to a Tens machine and charged me for it. You will be lucky if your GP will send you to a physio, I had to pay privately as my surgery are not spending money it seems!

[PMRpro Ambassador in reply to Jamie345]

There is evidence that the tests GPs use are not showing all UTIs and if the patient has symptoms they should be treated. Pred and PMR can both cause cystitis - the pain and frequency - as the result of interstitial cystitis or irritable bladder syndrome. But foul-smelling urine is more often than not a sign of infection. When I do finally go to the GP and she provides antibiotics it clears for some considerable time.

[Jamie345 in reply to PMRpro]

Thank you I will go see my GP next week and see what he will do I could do with a prescription of antibiotics to have for when it appears again but he won't do that I'm sure! I'd felt ill this time and only realised around tea time that it could be a urine infection making me feel this way. Just one more question if like to ask you is I'm getting pain in top of my right hip I can't walk when it's active as so painful, I saw an orthopaedic surgeon sent by my rheumy to rule out hip or knee replacement this was around January this year he said it was not bad enough to operate at present but if I wanted he would do it? Anyway I said no! But could it have got this bad in so short a time or is it the polymyalgia or predisinone cause this do you know?

[PMRpro Ambassador in reply to Jamie345]

There have been people where the OA has deteriorated very quickly. But also the x-rays/MRI may show that the damage is not bad - but the patient's pain is severe. And vice versa. If the surgeon offered he must realise that it is possible it is causing more trouble than you think. Pred can cause deterioration of the cartilage in some people. And PMR makes you walk badly and that can also make it worse. But if it is stopping you walking - it is time to consider surgery.

[Telian in reply to Jamie345]

I do Jamie, just finished antis for third UTI this year, I ask why I'm getting them so frequent and they can't tell me, just seen PMRpro and DL saying that pred and PMR can cause this, why have doctors not told me this? it's been going on for over 17 months now, I had 5 UTI's last year, seeing GP on Friday for results of lab tests for latest one so will be pinning him down a little harder.

I also had the debacle of sample being clear but still had cystitis like symptoms so was sent to Urology, Gynaecology, Dermatology and a Vulvar specialist and of course Rheumatology and all don't know. Each blaming the other. Dermatology did say that regular UTIs can affect the skin leaving it so sensitive it stings when passing water, make sense?

For me there is another avenue currently being investigated - Oncology - It seems my cancer drug could be drying out my body and to test this they have stopped it for a while, not looking forward to seeing him on 1st June as it is time to go back on either the same drug or a new one, I'm still a little dry but not as bad so at a loss as to what is the cause in my case. I use Lydocaine, to numb down there and Dermal 500 to moisturise daily. They help a little.

You are the first person I've read to mention recurrence of UTIs - would like to compare notes with your journey - it surely has to the be the AI? I too have the stiffness you mention.

[Jamie345 in reply to Telian]

I do recall someone saying before that it's common enough to keep getting recurring UTIs and again not sure of it cause, I don't go see my rheumy till third week of July , to ask him among other things, and yes we must convey any help or info as it's helped me, one minute I'm quite positive and can handle most problems but these water infection make me feel really unwell I don't have any cystitis burning or otherwise so they would not give me the antibiotics, I'm going to Spain in two weeks time and I will try get antibiotics there for the next time, which will definitely be!! Lovely to have you helpful message but sorry it's happening to you at the same time!

[Telian in reply to Jamie345]

All true Jamie, I wish I didn't get the burning though - can't stand it for one minute.

The feeling of being unwell, they say, gets worse as we get older. My late mother was hospitalised once with a UTI and was really poorly and disorientated - we didn't know what was wrong with her at the time and recall not understanding why/how a UTI could do that to her. I am now living it.

Professor Dasgupta is my rheumy and he told me it is not the AI? Be interested to see what yours says, let us know please.

Hope you have a lovely holiday and get the antis, my doctor is very good with me and I always have a course to take away.

[PMRpro Ambassador in reply to Telian]

UTIs are the most common cause of confusion and falls in the elderly - but the average doctor often seems to be blissfully unaware!

Now BD may think it is not the AI - but one cause of repeated UTIs can be the bladder not emptying properly and there can be a few reasons for that. One seems to fit with the fact that the bladder is affected by the PMR - it too is a muscle.

Another cause is that the urethra (connects the bladder to the outer world) is too narrow and prevents the bladder emptying properly. I have had 3 cystoscopies - they could see healed foci of infection on the wall of the bladder and since the urethra was narrow decided to try stretching it to see if that would help. Each time it has worked a minor miracle for the next 8 or 9 years.

[Telian in reply to PMRpro]

Guess what I understand everything you say yeeah - why because I've had all of them done this year they said the urethra didn't need stretching and I was emptying the bladder. They were mainly eliminating cancer due to blood constantly in the urine, which they did.

Maybe I should go back to urology which they said to do if no joy - I had it stretched some years before and yes it's lasted a long time - could they be wrong this time? and (might sound silly) would it not hurt to have it done anyway - I am desperate. Will they also be able to tell if the bladder is affected by the PMR, which I apparently might not have!

Will be going back on cancer drug 1st June and am dreading if the symptoms get worse again, as they did last effort to go back on them. Oncology explained the drug could be drying me out hence these trials without - although I'm better not all symptoms have gone... and it also makes sense when dermatology say the skin can get dried out due to several UTIs. Question is who's right, probably a mixture of the two - in between I'm still suffering. All they keep saying is with so many things going on it's difficult to know what is causing what.

Many thanks PMRpro - plenty of food for thought though and am seeing GP on Friday.

[PMRpro Ambassador in reply to Telian]

I'd certainly go back - and mention that it worked before. They may have reasons not to do it of course but they should tell you. You do have my sympathy!!!

[Telian in reply to PMRpro]

I will and thank you so much.

[HeronNS in reply to Jamie345]

Try to drink enough water, and, my favourite new thought, make sure your electrolye balance is good - you might be needing more salt and/or potassium, especially if you've been eating a low salt diet all these years as so many of us have.

[Jamie345]

Ok thanks onward and upwards

[Jamie345]

Thank you for your reply I will talk to my rheumy when I go see him, it seams that they all treat you different, he could not get my inflammation down at all on 40mg yet dropped it to 35 and so onwards at one time he got together with the liver specialist they are based at Kingston hospital to discuss me! She said I'm a complicated lady, and was full of sympathy as I was so ill all the time, she has me on 3 mg of steriods twice a day! As well as predisinone, my liver is fine badly scarred but doing well and just keep an eye on it every three months, then suddenly my inflammation dropped to 27. So rheumy was pleased and conintued with the tapering. I must admit it's all been confusing . But the more I read the more I'm beginning to understand hopefully!!!

[kulina]

Hi HeronNS, but, do you feel better overall? I understand what you are saying completely. Have you tried Ibuprofen for the ongoing stiffness? For years I've had aches and pains, neck, back, etc. but I thought it was from working on the computer, painting a room, etc. but PMR felt different which started in March 2016. I felt like the tin man in Wizard of Oz. So, about a year ago my doctor tried to reduce the Pred with horrible results and had to increase again. As early as this February my knees were in constant pain. A few months ago my doctor asked me to reduce again and I agreed it was time. She said try 200 mg Ibuprofen if the pain comes back because it will help with the withdrawal symptoms. Mind you, at the beginning of this journey she had given me a very strong prescription for Ibuprogen, I think it was 500 mg that didn't help at all! Well, I reduced from 8 mg to 7.5 to 7 and now I'm at 6.5 mg since December. When I have slight pains I take 100 mg Ibuprofen and the pain goes away. I feel much better on the reduced Pred dose, the side effects are almost gone and the slight exhaustion has gone away too. I try to walk and exercise as much as possible but I agree, that stress in any form is really bad. I sometimes wonder if Pred itself slowed me down, on the higher dose I felt like I had no strength in my arms and legs. Anyway, reduction is going well, I just hope I didn't jinx myself. I grew up seeing my grandmother survive on Ibuprofen and told myself I wouldn't do that but it's better than Pred. HeronNS, I hope you feel better soon.

[piglette in reply to kulina]

Hi Kulina, it is recommended that NSAIDs such as Ibuprufen should not be taken with steroids as they are contra indicative, although the odd one should be OK. Also the Ibuprofen is probably not helping the PMR but helping other aches and pains you may have. Ibuprofen is not an alternate for pred unfortunately.

[kulina in reply to piglette]

piglette, I understand what you are saying, if one suffers from PMR. Apparently with me, at this point it's not PMR anymore but other aches and pains. So, when do we know when PMR subsides and other aches and pains take over if we keep uping the Pred and not trying other pain killers? I was concerned about the contra indications too but my doctor said that as long as I take it with a meal it would be ok. Actually both Pred and Ibuprofen have to be taken with a meal.

[piglette in reply to kulina]

I think most people have a feel for what is PMR and what is not although we do tend to blame the PMR when it is actually things like OA. If it is shoulder pain and/or hip pain it is probably the PMR particularly if it is on both sides. If it is just on one side it is more likely to be something else. I do agree it is a bit hit and miss.

[piglette in reply to kulina]

I should add, one often feels that the PMR has gone away as the pred is working as it should. I thought that anyway. I then discovered at 3mg I was wrong!

[HeronNS in reply to kulina]

Thanks for suggestion. I don't take ibuprofen as there's a contraindication for me taking it (other than being on pred). I use aspirin judiciously and when necessary a small dose of codeine. Only ever for headaches, not for other pains. Also Tylenol if I want to avoid too much aspirin although it's usually not as effective. I've discovered, however, that the morning headaches I'd been suffering from with increasing frequency over the past few years may be caused by salt deficiency. Since I learned this, only about two weeks ago, and have increased my salt intake quite markedly, I've not had a single morning headache. Or any headache for that matter! I did find that increasing my salt intake (at that time very slightly) when I was having issues with feeling faint and also seemed to have a "skippy" heartbeat, those symptoms resolved. Apparently excess of cortisol (too much pred?) can cause loss of salt, and if one is already not consuming much salt that can cause real health problems. I'm even considering buying a salt shaker for the table - haven't had one on the table for decades, in what appears to have been a mistaken belief that salt was bad.

[kulina in reply to HeronNS]

I'm glad you figured out what it was. Our bodies are such delicate machines, one thing amiss and the whole body reacts.

[HeronNS in reply to kulina]

It's like being told all our lives that fat is bad. No, it's not, we need it! And salt isn't the culprit, we need that too, but what we don't need and what does us so much harm, is sugar. Wrong white crystal has been targeted.

[Perkey]

After 2 years I really thought I was getting on top of it all but although stiff legs much better I cannot walk far my legs just stop working. Dr has put me back on 5 mg pred (my suggestion). I don’t know really whether it helps or not I now can’t remember how being 100% fit feels. I have bought a bicycle thing which sits on floor and you just sit and cycle (my physio recommended this) certainly doesn’t do anything harmful to me so will just keep cycling 🚴‍♀️.