Pain in legs with PMR

Posted by tomek456 @tomek456, 2 days ago

Has anyone experienced severe buttocks pain and running all the way down into your shins and calves? My Rheumatologist says that is more likely a back nerve compression issue when it gets below the knees. But my spine doctor doesn't think that is the issue even though my MRI shows moderate spinal stenosis and a herniated disk. To my amazement, when I mentioned PMR, he asked what is that! It takes months to see a doctor and when you do they tell you go see another doctor! Meanwhile I'm in a lot of pain and the poison, prednisone.

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The first symptoms I started to experience with PMR was severe fatigue and pain from my glutes to my knees. The pain was similar to overdoing squats at the gym.

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Ask your doctor to order bloodwork-CRP and ESR.

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I get similar pain from my glutes to my calves. Prednisone makes it bearable. It mimics the pain I'd get from statins which I stopped taking after trying 3 or 4 different brands. I often wonder if people who can't tolerate statins are more prone to PMR.

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Profile picture for ropnrose @ropnrose

The first symptoms I started to experience with PMR was severe fatigue and pain from my glutes to my knees. The pain was similar to overdoing squats at the gym.

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@ropnrose my pain exactly and it never stopped. My mornings are pure pain, and it takes about one hour to start lessening. That’s typical PMR.

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Profile picture for kathleendw @kathleendw

I get similar pain from my glutes to my calves. Prednisone makes it bearable. It mimics the pain I'd get from statins which I stopped taking after trying 3 or 4 different brands. I often wonder if people who can't tolerate statins are more prone to PMR.

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@kathleendw I've been taking simvastatin for decades. Never had any aches or pains until PMR/GCA in July 2024. They're doesn't seem to be any rhyme or reason to this disease.

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Hello Tomek,
Shin pain was my first symptom with a f/u diagnosis of PMR and subsequent hospitalisation a month later. My other presenting symptoms were chills, low grade fevers, fatigue and elevated heart rate, along with knee pain which was presumed to be osteoarthritis from an old knee injury. My CRP was 90! The knee tap negative for sepsis. But not one doctor addressed such a high CRP. I also had a dry cough. I could not walk my knee was so bad. Second trip to the ER I was admitted and they threw the book at me with every known test. All indications were PMR and pseudo gout of my knee. I had the Covid virus 2 months prior. Never felt quite right. In essence, I would say PMR symptoms won’t necessarily fall into a classic “tidy” presentation. Also, covid is complicit in many maladies and spurring on autoimmune issues. The research supporting this is out there. PMR is an inflammatory disease and thought to be autoimmune. Managing it can be challenging and diverse for each of us. I wish you well in finding better health.

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Two years with PMR. On Humira, MTX and prednisone - finally down to 4 mg. My glut and upper thigh pain are the last to resolve and first to flair up again. I use extra strength Tylenol to help.

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Profile picture for ropnrose @ropnrose

The first symptoms I started to experience with PMR was severe fatigue and pain from my glutes to my knees. The pain was similar to overdoing squats at the gym.

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@ropnrose exactly the same with me. The fatigue is really hard to cope with! The pain gets better during the morning after a walk

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Thank you so much for all the replies. Seven months ago, I was hiking, camping, bike riding, working out, and now this disease has put a complete halt on all that. I've managed to taper down to 6mg prednisone, but the mornings are brutal; lots of pain and stiffness. My CRP and ESR levels are normal, so apparently, I'm one of those few that don't show elevated levels but still have PMR. When I first came down with the disease, before I started prednisone. I could barely walk in the mornings, and I was unable to raise my arms higher than stomach level because of the stiffness and pain. I also ended up in ER unable to barley move at all and in severe pian. Of course, they didn't know what was wrong with me. They did blood work and a CT scan. Everything was normal. So, they shot me up with Morpheme and 50mg of Prednisone and sent me home in a wheelchair. Next day I felt great but that only lasted a few days. Not sure what may have triggered the PMR in all of you but here is what happened to me. In Jan of 2025, this year, I was scheduled for surgery for enlarged prostate. Four weeks prior to that I came down with a respiratory illness that was going around. One week prior to surgery I recovered from that. Two weeks after the surgery I came down with the flu, probably caught in the hospital. Within one month of the surgery, I started hiking and riding again but started to notice pain in my pelvis area and thought it was from the surgery. Then in a few days I woke up in the morning with stiffness and pain in hips and shoulders. So, I'm guessing all of that may have contributed to triggering the PMR. I can't believe after all these years they still don't know what causes it. Anyway, I would love to hear from you all and others timeline on what transpired prior to getting PMR. I'm sorry that all of you are going through this and I wish you all better health now and, in the future. Note: I use ChatGPT, an AI app, and it has given me a plethora of information on PMR. I've learned more from that than I have my doctors.

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Profile picture for savitchcrew @savitchcrew

Two years with PMR. On Humira, MTX and prednisone - finally down to 4 mg. My glut and upper thigh pain are the last to resolve and first to flair up again. I use extra strength Tylenol to help.

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@savitchcrew
Hi savitchcrew,

You mentioned you have tapered down to 4gm. At that dose do you still get pain or stiffness in the mornings? What dosage did they start you at? Did you or are you taking anything for the damage prednisone does to the bones? Other than the high dosage they gave me at the ER, my rheumatologist started me at 12.5 mg in April of this year. I'm currently at 6mg but with pain and stiffness in the mornings for several hours and then it lightens up around noon.

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