Any difficulty in diagnosis of PMR?

Posted by crisco50 @crisco50, May 4, 2023

In my research I have noticed that many of the symptoms of PMR share many common symptoms of other diseases. For those of you already diagnosed, what was the length of time that it took to get a diagnosis?
I also read that markers in blood tests are almost normal in some cases & therefore not helpful in finding a diagnosis. Have any of you faced this obstacle in getting a diagnosis?
What was the symptom or condition that finally led to a diagnosis of PMR?

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

@gailg

I am going on 3 years. Saw my GP, a pain management doctor, a neurologist, and a neurosurgeon. All had different opinions. Started in my hip and thighs, progressed to shoulders arms, then to hands. Survived on massive doses of ibuprofen (no side effects from that yet.) It was gradually getting better when I saw a new GP who right away said probably PMR. But when my blood tests came back negative he said couldn't be. Now it has recurred in my hips, but not nearly as bad. Back on the ibuprofen. I do have hope it will finally go away. I am sure PMR is what I have and the most doctors don't understand the symptoms. If I am not better soon I will demand steroids. Thanks to this site I finally understand what I am dealing with.

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Trust me you have PMR so I suggest you insist on the correct tteatment !

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So it is PMR
1. Stiffness in hips especially im the.morning or after sitting down. Sttange sensatiom in inner thighs after rest.
2. Upper arm stiffness and on top.of shoulder. You cannot lift your arm . Bit it doesn?t feel in the joint its in thr muscle.
3. Stiff neck hard to
look right or left. ( this can come and go )
4. In timreuntreated it also affects fingers.
Hope this helps.

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@crisco50

Your answer makes so much sense. For myself I should have been more diligent. When I developed symptoms of PMR 3 years ago I was put on a very short term of Prednisone. In a matter of days I was showing signs of relief. When my symptoms returned a year ago I was told by the Rheumatologist that was Osteoarthritis & just keep active. It was an issue with my eyes a couple weeks ago that made me do some more investigating. I see my PCP on Monday & will back up my suspicions with the info I’ve gathered on this site.

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Hi @crisco50, my PMR symptoms eventually gave way to a number of strange symptoms - problems seeing out of one eye, short stabbing pains from my ear to my nose, a tender scalp, an itchy torso with no rash, a dry cough, a really stiff neck, loss of appetite and extreme fatigue which was anemia. Turns out it was GCA. Be sure to mention your eye issues to a PCP. I hope it's nothing.

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@12345chris

Trust me you have PMR so I suggest you insist on the correct tteatment !

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Thanks for your comments. I have thought for some time that it is PMR, in spite of the doctors, and this site has confirmed it as far as I am concerned. I also am reading lots of ramifications of prednisone. I have survived, and gotten quite a bit better, on (large doses of) Ibuprofen with no ill effects to date. After this flareup I will wean back off of it.

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Be very careful using ibruprofen in large doses its.very dangerous . Check online side effects and how it can cause bad things to happen to you please. ! Its not the answer to your pain. Good luck

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I was initially diagnosed with PMR from my bloodwork alone and symptoms that were around my hips and lower back ... I was hobbling around but not complaining. That was in November 2021. I am getting worse, blood work declining, but my bone density is good despite 20 - 25 mg a day of Prednisone for 16 months ... I am also avoiding diabetic diagnosis despite putting on 30 lbs since taking Pred. These days the doctors (and I seem to have 4) simply don't know what I have. That was very unsettling to start with ... especially for my husband. The biggest issue for me is that my lungs don't work like they used to ... and I dont know if this is Pred, covid vaccines, or just me. As the breathing issue came on like a train going full belt, I don't think it was my body in rapid decline and the xrays and cat scans show no cause. I'm thinking that perhaps all this is Covid vaccine related ... and yes I would take the Covid vaccines again as the alternative could have been deadly. I find this site helpful ... someone to talk to ... and lots of interesting informaton ... and one is certainly not alone. PMR seems to have many faces? I don't ever want to be bitter. Good luck and get well soon.

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@tsc

Hi @crisco50, my PMR symptoms eventually gave way to a number of strange symptoms - problems seeing out of one eye, short stabbing pains from my ear to my nose, a tender scalp, an itchy torso with no rash, a dry cough, a really stiff neck, loss of appetite and extreme fatigue which was anemia. Turns out it was GCA. Be sure to mention your eye issues to a PCP. I hope it's nothing.

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My Doc warned of GCA naming symptons to look out for
1 Severe headache.
2. Stiff Jaw
3. Loss of being able to feel your temperal pulse. ( the one you can feel on the pillow at night when you lay on your side) )
If this happens urgent care is needed as the effects of this horrible illness can be bad if you have a flare up !!!

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@janettec

I was initially diagnosed with PMR from my bloodwork alone and symptoms that were around my hips and lower back ... I was hobbling around but not complaining. That was in November 2021. I am getting worse, blood work declining, but my bone density is good despite 20 - 25 mg a day of Prednisone for 16 months ... I am also avoiding diabetic diagnosis despite putting on 30 lbs since taking Pred. These days the doctors (and I seem to have 4) simply don't know what I have. That was very unsettling to start with ... especially for my husband. The biggest issue for me is that my lungs don't work like they used to ... and I dont know if this is Pred, covid vaccines, or just me. As the breathing issue came on like a train going full belt, I don't think it was my body in rapid decline and the xrays and cat scans show no cause. I'm thinking that perhaps all this is Covid vaccine related ... and yes I would take the Covid vaccines again as the alternative could have been deadly. I find this site helpful ... someone to talk to ... and lots of interesting informaton ... and one is certainly not alone. PMR seems to have many faces? I don't ever want to be bitter. Good luck and get well soon.

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required:Call 999 or go to A&E now if:
you have severe chest or stomach pain – these can be signs of a hole in your stomach or gut
you have difficulty breathing, or asthma symptoms that become worse
you get a severe headache, a high temperature or stiff neck, and a dislike of bright lights – these can be signs or inflammation of the protective membranes that surround the brain and spinal cord (meninges)
you have blurred vision or you see or hear things that are not real (hallucination
This is the national healths Servicr in the uk,s website side effectsl warnings. For Ibrofen. As you will see the reference to difficulty btrsyjing symptons so please please just seek advice.

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@tsc

Hi @crisco50, my PMR symptoms eventually gave way to a number of strange symptoms - problems seeing out of one eye, short stabbing pains from my ear to my nose, a tender scalp, an itchy torso with no rash, a dry cough, a really stiff neck, loss of appetite and extreme fatigue which was anemia. Turns out it was GCA. Be sure to mention your eye issues to a PCP. I hope it's nothing.

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Thank you. I was fortunate to have an appointment with an eye specialist yesterday for another problem .. I did ask about testing for GCA. He was kind enough to run some tests during the same appointment. The preliminary results were negative. However, he gave me a list of symptoms to watch out for. He did insist that any sudden vision loss needed to be assessed in the ER.

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