Has anyone experienced jolting pain, spasms/and numbness in their legs

Posted by lsjaustin @lsjaustin, Jul 18 2:07pm

I have been diagnosed with PMR… prednisone has managed my low back and upper body pain, however the electric jolts of pain and spasms/cramps as well as numbness in my legs and feet not so much. Really harsh when I first wake up.
I am now on gabapentin for nerve pain and a muscle relaxer plus prednisone; and as long as I standup I generally feel ok. I cannot sit comfortably for more than a few minutes and if I lay down the whole cycle begins again.
If you have experienced this I would love to hear how you manage it.

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

Profile picture for megz @megz

Do you take magnesium (without added vitamin B6) for cramps? A full blood test might show if you're deficient in any salts or minerals which can cause cramping. Prednisone does change the balance of salts and minerals.

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Quick question, why without B 6?

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Profile picture for lsjaustin @lsjaustin

Quick question, why without B 6?

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Excess vitamin B6 can cause peripheral neuropathy. Recommended daily B6 intake is 1 - 3mg, but some magnesium supplements and sports drinks contain much more. I took the same magnesium brand every day for years, never noticing they included 60mg of B6, and not knowing that excess B6 was harmful.

Blood tests after I got PMR came back with a warning about my high risk for peripheral neuropathy because I had dangerously high B6 levels. The pathology report said the most usual sources of excess B6 were magnesium supplements and sports drinks. I now take a different brand without B6 and blood levels are normal. Food items and all supplements should be checked to see if they contain B6.

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I am sorry you are going through this while trying to control your PMR. I was diagnosed with PMR initially but I too, had jolting pain in my legs followed by numbness in my feet and an ankle. High levels of eosinophils were causing my symptoms and I was eventually diagnosed with EGPA instead of PMR. I was put on Nucala to lower the eosinophils drastically, and my symptoms receded. The numbness went away. I am very grateful to the rheumatologist who connected the dots to this very rare disease. This may only be my story and not what you have, but worth asking about since the numbness in my feet and jolting pain indicated a vascular cause which is not typical of PMR, but definitely of EGPA . Worth asking about?
God bless you and may you find relief from that great discomfort!
MTH13

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Profile picture for mth13 @mth13

I am sorry you are going through this while trying to control your PMR. I was diagnosed with PMR initially but I too, had jolting pain in my legs followed by numbness in my feet and an ankle. High levels of eosinophils were causing my symptoms and I was eventually diagnosed with EGPA instead of PMR. I was put on Nucala to lower the eosinophils drastically, and my symptoms receded. The numbness went away. I am very grateful to the rheumatologist who connected the dots to this very rare disease. This may only be my story and not what you have, but worth asking about since the numbness in my feet and jolting pain indicated a vascular cause which is not typical of PMR, but definitely of EGPA . Worth asking about?
God bless you and may you find relief from that great discomfort!
MTH13

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Thanks for this additional information. Did you have a different blood work up that discovered this?

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Profile picture for megz @megz

Excess vitamin B6 can cause peripheral neuropathy. Recommended daily B6 intake is 1 - 3mg, but some magnesium supplements and sports drinks contain much more. I took the same magnesium brand every day for years, never noticing they included 60mg of B6, and not knowing that excess B6 was harmful.

Blood tests after I got PMR came back with a warning about my high risk for peripheral neuropathy because I had dangerously high B6 levels. The pathology report said the most usual sources of excess B6 were magnesium supplements and sports drinks. I now take a different brand without B6 and blood levels are normal. Food items and all supplements should be checked to see if they contain B6.

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Thanks for this information

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Profile picture for lsjaustin @lsjaustin

Thanks for this additional information. Did you have a different blood work up that discovered this?

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I had standard CBC with differential over the years with many occasions of high eosinophils. Chronic Sinusitis which became autoimmune. Never could find a trigger after years of allergy shots and lots of episodes of prednisone and sinus infections and two sinus surgeries.
It progressed to asthma like symptoms, controlled by Advair inhaler, and finally the pain similar to PMR and the surging pain from groin to foot leaving me numb in the foot and ankle. I was put on prednisone 40 mg in the ER, lowered to 20 mg which did not mask the pain or numbness, and sent to multiple doctors for further evaluation. Took over two months to get in to see a rheumatologist who happened to have a doctor friend who was a specialist in eosinophilia. He recognized the total presentation as EGPA, formerly called Churgg Strauss disease. I was put on Nucala, a biologic which targets eosinophils ( they are a normal blood cell which in my case went autoimmune and attacked me instead of their intended targets).
Very long story , but I am very fortunate that I have done very well on Nucala, and only have sinusitis as a remaining intermittent issue.
You may not have any of these issues, but I felt that the numbness warranted asking about EGPA. It is very rare and most doctors only saw it in med school, so easily overlooked.
Best of luck and I hope to hear of your success in treatment soon, whatever the cause.
Keep calm, ask questions, and carry on!
MTH13

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