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Bilateral Muscle Pain in Arms, Legs, Neck and Shoulders

Posted by 1niceguy @1niceguy, Nov 23, 2023

For the past 6 months I have been suffering from severe bilateral pain and stiffness in my arms, legs, neck and shoulders. I have been to several doctors (2-rheumatologists, Neurologist, endocrinologist, family doctor) and they have done multiple blood tests, some CT scans and an ultrasound of my thyroid, physical examinations etc. The best way I can describe the pain is that it feels like my body was injected with lactic acid (like I did a full body workout without ever having worked out before). It puts me in tears just to take a shower or get dressed. My muscles do not hurt when I touch them, only when I flex them or use them. I do not have joint pain. When it first started 6 months ago it was extreme pain in my upper arms and legs and has since spread to the other areas. My abdomen and back muscles do not seem to be affected. They have ruled out Polymyalgia Rheumatica, lupus and many other things, but cannot figure out what it is. Please help!

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chpfireball | @chpfireball | Aug 16 10:02am
In reply to @boo3 "I too had same experience. Woke up one morning in November of ‘24 with excruciating pain..." + (show)
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I too had same experience. Woke up one morning in November of ‘24 with excruciating pain in both shoulders and hips. Had to sleep in one position as it was nearly impossible to use those body parts to turn or flip. Same with attempting to sit or get back up. Then took a minute or two to allow pain to subside to then walk. Actually felt my best when taking daily walk but when finished had to struggle to sit and remove shoes (not from walk but from PMR). Went over a month like that until GP had blood test run and diagnosed PMR. Prescribed prednisone and pain almost immediately diminished. I have seen rheumatologist three times and am slowly weening off of medication. I have been blessed that the terrible pains in original spot have not flared up and now dealing with low to medium pain in hands (knuckles and wrist) which for the time is bearable. I do not want to be on prednisone long but do realize that it will be the bridge to get me back to normal or what will be my new normal.

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I had exactly what you had. I started at 15 mg Prednisone and tapered to 0 in 15 months. At 3mg I started having pain in my fingers, thumb and wrists along with swelling. Rheumatologist took xrays and additional blood test and said it was osteoarthritis and kept decreasing the Prednisone. I was completely off Prednisone for three weeks and couldn't even make a fist anymore. Then my medical facility quit taking my insurance so I had to start seeing a different Reumatologist. She took xrays and more blood tests everything came back normal. She started me on Meloxicam that had no effect. She then thought I was having a reaction to coming off prednisone too fast and put me back on 10 mg Pednisone for 30 days, the alternate 10 and 5 every other day for two weeks, then 5 for 30 days. 5 and 4 every other day for two weeks then 4 for six weeks which is what I'm on now. So far no pain or swelling have come back. Don't rush to come off. Make sure you are not in pain when you decrease because it doesn't go away. Good luck.

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vvlaraia | @vvlaraia | Aug 30 10:32am
In reply to @vvlaraia "I'm so glad your pain diminished immediately with the prednisone! Hopefully soon, you will be totally..." + (show)
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I'm so glad your pain diminished immediately with the prednisone! Hopefully soon, you will be totally off it. I see doctor in about 10 days and now that he has lab report, can be able to diagnose. Everything you experienced with the pain, I have as well. Even the walking which was great and returning to struggle to sit and remove my shoes! Hopefully soon my pain will diminish as well.

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I now officially have been diagnosed PMR and have started a 30 day course of Prednisone 15 mg. with tapering doses over the next 6 months. Am feeling better but still have some pain and fatigue although much less. I will see physician in 3 months to evaluate my condition and treatment. Walking, PT, and stretching helps a lot.

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jeff97 | @jeff97 | Aug 30 10:46am
In reply to @vvlaraia "I now officially have been diagnosed PMR and have started a 30 day course of Prednisone..." + (show)
Profile picture for vvlaraia @vvlaraia

I now officially have been diagnosed PMR and have started a 30 day course of Prednisone 15 mg. with tapering doses over the next 6 months. Am feeling better but still have some pain and fatigue although much less. I will see physician in 3 months to evaluate my condition and treatment. Walking, PT, and stretching helps a lot.

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6 months is a very optimistic timeframe for prednisone. Most people need at least 1 - 2 years, and some people need it for much longer.

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vvlaraia | @vvlaraia | Aug 30 1:30pm
In reply to @jeff97 "6 months is a very optimistic timeframe for prednisone. Most people need at least 1 -..." + (show)
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6 months is a very optimistic timeframe for prednisone. Most people need at least 1 - 2 years, and some people need it for much longer.

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Well he said he would evaluate the situation with the Prednisone and depending on how I'm doing MAY possibly give me methotrexate if needed afterward if necessary. I realize it could be a lot longer but when I asked the physician, that is what he told me. I guess we will see.

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vjm0223 | @vjm0223 | Aug 31 12:46pm

I see your post is nearly 2 years old. Did you ever get a diagnosis?
I have the exact same symptoms.
My rheumatologist does not think I have pmr.
I’m having an mri next week to see if I have a spinal stenosis or spinal compression.

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