Can you have pmr without bloods showing.? I have pain in shoulder muscle,hips and weak legs..I can't walk very far or do anything after about 15 minutes.Then pain in muscles gets worse and worse til can't stand it any longer and have fatigue and have to sit down.
Is this pmr?: Can you have pmr without bloods... - PMRGCAuk
Is this pmr?
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benicarlo
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Up to about 1 in 5 patients have PMR symptoms that aren't accompanied by increases in the so-called blood markers, ESR and CRP. Mine never went out of the "normal range" but they were raised for me.
PMR as such isn't the disease - it is the name given to a set of symptoms which may have various underlying causes. I suppose it is possible that the version of PMR that has no raised markers could be a disorder in its own right,
What do you mean when you sy "weak legs"?
I dont have a lot of strength in them and the muscles ache.I am unsteady on my legs They even ache in bed at night.
Your symptoms sound a lot like mine, plus painful feet. I have to keep sitting down. It’s horrible isn’t it.
Yes I get painful feet and Ankles.Vit D seems to be helping a bit with swollen ankles.(I wasn't given vit D when I was on prednisolone. ) In fact apart from originaly seeing a Dr. In the first month I was given a list of how to reduce the pills and more or less left to it.
When you say you have to stop after a bit - is that because of the weakness/tiredness or have you got cramp in your calves which improves when you stop?
Glad Vitamin D has helped a bit, you’ve reminded me that I have some tablets which I haven’t opened. I am not sure if I should take them along with my medications. I will ring my pharmacist and find out. Thanks benicarlo.
I've had PMR for 3 years and am now on 1 1/2 mg of Prednisone. The aches from PMR are gone but meantime my arthritis has gotten worse. The symptoms you are describing are a lot like mine especially aching in the legs at night. I have been diagnosed with arthritis in the lower spine which causes the pain and weakness you are describing.
Are you on any prednisone and if yes how much?
No finished in April 2020
It doesn't sound like PMR, which is characterised by pain and stiffness after a period of rest/inactivity, but which typically improves the more you start moving.
How long did you have PMR before diagnosis? I can assure you that some aspects of PMR get worse as the day goes on - and what he says sounds very PMR-ish ... Not saying it is, but it does have to be considered.
My history (or any other n=1) is not relevant. Typically, PMR presents as I have described, and not as worsening pain over 15 minutes, as described by Benicarlo. PMR would not be at the top of the list of differential diagnoses (except if you ask a community of patients with PMR!)
As with a lot of similar posts here (and certainly not most), useful responses will be of limited value without a proper history and examination by a clinician.
I'm basing my comments on how PMR presents on the stories of thousands of patients who have it, including me as a sample n=1. Not on the textbooks which really don't necessarily reflect the reality of living with PMR. And I had asked for clarification.
Of course any patient needs a clinical opinion - however, the chances of that for most people here is fairly minimal at present ...
Where can I find an accurate & honest description of what it is like to live with PMR? It's very difficult to explain to someone who's father was a doctor (deceased) & is rather inclined with most illnesses to say, 'its a bit of a fuss about nothing'.
With most people when you say you have polypyalgia rheumatica they have no idea what you're talking about, & if you're standing & moving around a bit might say, 'well you look pretty healthy to me'.
I try not to mention it unless it's obvious I'm struggling & someone asks.
Try looking at this from FAQs -
There are a couple of research papers. This is a link to the PDF of the first study Helen did
eprints.whiterose.ac.uk/852...
If you are familiar with the Yorkshire accent you can hear it in the citations!
I think she has done a follow-up but I'm not sure and can't find anything. She is heavily involved in the development of assessment tools and it is clear from her work that there are doctors who DO understand the impact it can have on us. I can only say, I hope anyone who thinks it is "much ado about nothing" develop it themselves at some point and have equally unsympathetic medical care!
I tell people (when I do tell people) that I have Polymyalgia Rheumatica, a.k.a. PMR, that's an autoimmune inflammatory muscle disease. I also tell them that it's excruciatingly painful without prednisone to control the inflammation.
For the most part people seem to get it but I'm not sure they understand the excruciatingly painful part.
try this: read.bookcreator.com/B0azEx...
Marvellous. I'm lucky at the moment then it seems, as I only have it in my legs, although it's difficult to walk first thing in the morning without support. Everyone should have a look at it if they haven't already. Thank you!
it’s in FAQS -as is link to Kate’s book under PMR -All Topics -
healthunlocked.com/pmrgcauk...
Thanks - am beginning to understand a little more as I go along. It's just at the top of my legs which are giving all the trouble, my thighs mainly at the back. Now on 20mg & this morning felt like my hamstrings were about to snap, but OK now, so will continue with 20mg until I see Dr Hughes next Tuesday.
You are welcome! It’s great to share this clever little booklet with those around you so they get a better picture of what’s going on with you.
You are correct! My husband has been an ER and GP physician since 1981 and when I was diagnosed with PMR in 2014, he hadn't heard of it (he's up to speed on it now and indeed, has referred patients of his to a rheumatologist). I am constantly explaining to people, "No, it is not like fibromyalgia" because most people have never heard of this condition. And, often have been told that "I look fine" also. I don't know how I got it, and wonder if any of my ancestors had it but just didn't know what it was. I am also one of those who often feels worse as the day goes on. The dr is always asking me if I'm worse in the AM. I guess that's more typical.
Why do I suddenly feel confused and anxious??? Everyday I get my coffee bowl of pills and sit down with my PMRGCAuk email with the day's posts. I learn a lot, think a lot, I check in with symptoms, read links, and if it's right chime in with post or question. The posts above are a concern to me and my symptoms. When I am up and about while stiffness improves some...pain does not. Especially my hips and waist level back. One of the most difficult issues is my brain which is getting worse. So confusion comes easy. Pugchick's comments about getting info from a group of PMR patients also threw me. What is that? I am trying to hang in for 6 weeks until I hopefully can get a new med to help. I am on 30 of pred and still have major physical issues.....I go.no where but doc offices or labs. So I laying lower than low. So now do I need to look at my symptoms and those by others on hete as something other than PMR? It took me awhile to understand PMR. I have tried to just sit with stuff this week on hete because my brain is so bad but this time I needed to say something. Maybe I have misread things......
"The posts above are a concern to me and my symptoms"
Why? The nature of any forum is that everyone is different and has different problems - you do have to learn how to choose and pick what fits for you. It is very hard at present when it is so difficult to access enlightened and accurate management from professionals and all we can offer is quite general comfort and answer the question asked from our experiences. The claim that their background or history is not relevant seems evasive to me - of course it is in a patient-led support group. We know nothing at all about their qualifications or experiences because they haven't deigned to tell us. My husband was an expert in critical ischaemia and I worked with him for many years. Yes, legs aching at night could indicate ischaemia but the rest of the things the person said didn't really suggest that they were suffering that. But the bottom line is that what was asked was "could it be PMR" and yes, it could be. Then it is up to your medical team.
Maybe you are too close to the problem? Autoimmune disorders can be very complex, you have a complex history, it isn't going to be easy anyway, And then someone you know nothing about chucks a spanner in the works.
I knew I should have put the phone down. I am so overwhelmed with symptoms and thinking about them. I don't have a good answer for you. It just hit me hard and drove me to wonder about whether it's PMR and it took a long time to understand and feel settled with PMR to begin with. I guess my upset about pred is spilling over. Just ignore me and what I wrote. I will put the spanner down. Not sure why I caught it in the first place. Maybe it hit me in the head?
No, won't ignore you because you are worried about it. Always say when you are worried - or it will fester without a bit of light shed on it. We've all been there
As PMRpro has said we won’t ignore you… many have been where you are now, and will help, that why we are here.
Occasionally you get an odd comment or reply that may upset you, but that’s very much in the minority…
Yes you are right about that. As I said I knew I should have left my.phone on the coffee table. Sometimes you have a day where you leave all alone cuz you know. You know? Strange day today. Thanks to you and Ms.Pro for kindness.
We all have strange days… 🌸
Some stranger than others!!!
Indeed!
“….useful responses will be of limited value without a proper history and examination by a clinician.”
That may be true, but trying to obtain an examination by a clinician is sadly lacking in lots of areas at the moment, so many rely on this forum for some information, and a persons history is relevant
I have been seeing a Dr. Trying to find out what it is. She said that some things sound like pmr but not the usual as having had it I am aware of. I must admit that I did say to her that I still had some pills but was very reluctant to go back on them again.Unfortunatly she has now left so was told I could have a phone consultation with another Dr. Have had 1 or2 of these but more or less been told its old age!
True - but it is extremely unlikely that we would ever dissuade someone from going to a doctor. If it is PMR then they will HAVE to see a clinician to get pred, even if it is just the practice nurse. And there is a range of things that should be excluded before deciding on the PMR diagnosis.
About a month.I thought I had pulled my back sorting clothes on my wardrobe in Spain.It has 2 drawers underneath and is a bit of a stretch up to rail. I knew it wasn't when I couldn't turn over in bed amongst other things.
"I knew it wasn't when I couldn't turn over in bed "
And THERE is probably one of the cardinal signs of PMR!!!!
Before I was diagnosed with PMR I had the same sensation - turning over in bed was like being encased in wet cement...
I thought of it as turning over by numbers! There was a strict procedure to manage it ...
Ditto to my GCA…..
I have great difficulty getting out of a chair and getting in and out if a car.
That sounds like the beginning of my pmr. Then it moved to my shoulders to the point I had to lift my arm with the opposite hands to reach the toilet paper roll.
Oh my, you have just brought back a s***load of bad memories. Never again I hope, thank you pred!
My neighbour told me her daughter remarked one day that Mrs ___ must have really bad arthritis, as she had observed me struggling up my front steps. My doctor at the time I'm sure viewed me as a hypochondriac old woman and prescribed painkiller celebrex, which I didn't take. Your symptoms of difficulty turning over in bed (and probably also getting out of said bed?) rising from a chair, manoeuvering in and out of a car.... I'm sure most if not all of us can relate, although maybe the memories have been repressed!
From a personal point of view I would have to totally disagree with that as a description of PMR. Pain, stiffness and agony yes, ability to move without further pain, if that was possible, non existent. Carried into hospital as I was unable to walk. In retrospect I realised I had been suffering from PMR for a few weeks, probably months before and the pain and/or the ability to move never improved the more I moved.
Mine didn't "typically improve the more I started moving". It got a great deal worse which is why I went to the GP who diagnosed PMR in 2017.
I agree with you only to the point that if I kept on moving I was mobile and functioning, but even a very few minutes seated and I was back to the same agony of rising and taking the first few steps. Definitely didn't improve as the day went on. I think the idea it's "morning stiffness" comes from conflating it with something like osteoarthritis, which of course given our age many of us also have.
My blood test done by the rheumatologist showed no inflammation apparently, and I'd been suffering for 5 months without getting diagnosis. But the stiffness was exactly the same on both sides of the body (tops of thighs and across shoulders) and eased a bit with exercise.
Those things, and being unable to turn over in bed, are classic symptoms of under/untreated PMR, probably everyone here has experienced them, and the good news is that they are likely to improve rapidly with steroids if it is PMR. However, other things can make these things difficult (eg arthritis in your hip or back). More importantly, the worsening pain and muscle fatiguability over 15 minutes are features more typical of impairment of either the blood supply or the nerve supply to your legs. More detail of your symptoms and a physical examination are essential to rule out these potentially serious conditions.
as you can see PMR appears in many guises...do steroids help is one way of homing in on it. But the symptoms you have described could be other things, you need a clinical assessment...but perhaps they could give you a challenge with 20mg for 3 days and see if that helps.
Five years prior to being diagnosed with PMR, I experienced the same exact pains and stiffness that PMR exhibited. Those pains, while happening around my body at different times and stages, were a direct result of my taking Simvastatin for high cholesterol.
If you are on statins, you might consider talking to your doc about temporarily eliminating them.
I’m just the same. Gp has decided I’m better because of normal bloods but my body says different.
I never had any results from bloods. I went to 5 doctors and the last one said it seems like palindromic rheumatism so thanks to this great site I researched it and when the consultant saw me - I was able to tell him how to diagnose me. Steroids!
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