1. < Bones, Joints & Muscles

Mystified. Moving pain below waist and in both legs

Posted by roblou @roblou, May 23 12:14pm

Two + years ago doing a leg exercise I aggravated a deteriorated disk situation. By that night, I was pulling myself up the stairs and had almost debilitating pain shooting down my left leg, wrapping around my knee and ankle, with similar but less effect on the right side. Worse through the night - no position helped until I discovered propping the base of my spine up.
A year of PT and the initia symptoms subsided somewhat. Very little pain at night but then the pain began to travel back and forth - sometimes like a rod jammed up the bones of my right leg, or a pinching pain like a hammer on nerves in my hip when I walk. For a while I had a deep pain in the right buttock. It’s relentless and ever changing. At times I’m unable to walk do to the nerve pinch.
Over the counter meds do little to relieve the situation. Nor did a steroid injection into my back. I’m strong and flexible - flexible in that I can easily touch my toes but as the condition progressed and stiffness increased it’s difficult and painful to cross my legs in any way. Intense stretching and pressure on the joints creates more mobility but has to be maintained. Age 67. Female. No other known conditions.
X-rays and an MRI provide no clues. The only constant is that the discomfort persists daily. I used to hike for miles, but sometimes now walking 10 steps is excruciating.
My PT therapist has been mystified.
One day I mentioned that my mom had polymyalgia rheumatica and he was convinced this was an auto immune condition. Indeed, my sedimentation rate was slightly elevated though CRP normal. Sed rate has returned to upper normal range. Plus, while it is worse after sitting for a while - just needs a minute of loosening up - it’s not worse in the morning and nor does it affect my shoulders which I understand are conditions of PRM.
Any thoughts on what this might be?
I’d love to hear if anyone has experienced or heard of something similar. I thought I’d post here before going to the auto immune group.
Many thanks.

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roblou | @roblou | 2 days ago
In reply to @jenniferhunter "@johannab Sometimes surgeons miss where the spine issue is. If there is spinal cord compression in..." + (show)
@jenniferhunter

@johannab Sometimes surgeons miss where the spine issue is. If there is spinal cord compression in the neck, it can cause problems with the lower body and walking. I had these symptoms. Doctors need to look at the entire spine for compression of the spinal cord. Aside from that, there may be possible compression at the nerve roots which are more specific connections and better understood. If it's the spinal cord getting compressed, it is hard to pinpoint exactly what nerve fiber in that big bundle is getting squeezed. You may have to speak up and ask about this if your entire spine has not been imaged.

Jump to this post

Thanks very much. That makes a lot of sense. I will take your comment into my next appt and read it verbatim. Best to you!

REPLY
gypsyfaith | @gypsyfaith | 2 days ago

I have had the same kind of problems-- but because I have scoliosis and a 30 degree twisted spine, many docs just related the pain, moving pain, electro-like shocks as all related to that. However, since I started participating in DNA research as a subject, one day a report came that said I had a DNA pre-disposition to having high URIC acid as a trait. I recalled my grandfather having a radical case of gout and what he went through - ending up in wheelchair, etc. I took the DNA report to my doctor and was met with resistance from their staff. They did not even want to look at the report. However, one PA decided to do a blood test and with her reluctant attitude I thought it might be that she wanted to prove the report wrong. But, guess what ! My score was 7.2. Then when seeing a hematologist for my blood clotting problems, the doctor did a uric acid test -- score 7.5 and that report went to my GP office --- they tested me within 2 weeks of the hematology test and that one came out 7.8. So, then i got a call from the GP office that they are giving me the diagnosis of Gout and ordered meds. Now, I have been going thru this struggle with that doctor/staff and for over 6 months with this issue and I am getting ready to move on to another medical practice because of having to go thru struggle just to get decent health care. I am 76, in chronic and acute pain daily and even as I try to help the health care profession to help me, it is resistant to doing it adequately -- of course, insurance is driving a lot of medical professionals to resist more tests and more diagnosis and more treatments because of their reluctance to pay. I used to be a clinical social worker was an insurance provider and I get it -- but my ethical code said I had to do the best for each client regardless of my frustrations or desire to just not go the extra mile to challenge the insurance companies. Well, I will tell you this -- it is more than worth it to participate in DNA research because it has validated all of the hard-learning self knowledge about my body and health that I have told doctors about my history for years. And when I have taken the DNA reports to my cardiologist, my hematologist, and pulmonologist, they all said it made sense to show them. The only resistant group has been the general practitioner group. Good luck with your venture to find the best care that you can get !

REPLY
1 reply
ga29 | @ga29 | 2 days ago

I sympathize with you for your GP’s resistance to your description of pain throughout. I have just been through similar from my last appointment to discuss my long term cervical pain and the returning lumbar pain as well. I was so disappointed by his dismissive attitude towards what I was trying to tell him, I’ve made an appointment with another NS at a hospital close by.

I have to say this is very frustrating as he did my last fusion in 2023, which felt so successful then.
He ordered a spect nuclear bone scan of my cervical area, and a full MRI of my neck and lumbar areas in May.
He asked me my symptoms at my appointment in June, when I said the worst was a shocking pain lasting only seconds that blasts up my left side of the neck and down, into my shoulder, and my pain is mostly on my left side down my leg, into my foot and toes. My last MRI ‘s show a number of problems such as bone spurs, bulging discs, mild to moderate stenosis, flattening of cord around c5-6, c7, even some activity at left side c2-3.

His response was this does not match your MRI, the damage is to the right side. The shock does not come from your neck, and that was essentially the end of his listening. I never got to the rest, really, other than my pain wrapping around my neck giving me headaches. Pain when turning my head up and down like when I’m in church trying to follow along, shock-like pain.
When I did a search right here on our Mayo forum, I found something called Lhermitte’s sign? Is that correct, which describes my pain exactly!
I feel so upset when a highly skilled doctor just doesn’t listen, his views are narrow and perhaps he thinks I’m an old lady who just has arthritis.
I won’t give up, I’m determined to find answers to my neck pain.

REPLY
1 reply
Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | 1 day ago
In reply to @gypsyfaith "I have had the same kind of problems-- but because I have scoliosis and a 30..." + (show)
@gypsyfaith

I have had the same kind of problems-- but because I have scoliosis and a 30 degree twisted spine, many docs just related the pain, moving pain, electro-like shocks as all related to that. However, since I started participating in DNA research as a subject, one day a report came that said I had a DNA pre-disposition to having high URIC acid as a trait. I recalled my grandfather having a radical case of gout and what he went through - ending up in wheelchair, etc. I took the DNA report to my doctor and was met with resistance from their staff. They did not even want to look at the report. However, one PA decided to do a blood test and with her reluctant attitude I thought it might be that she wanted to prove the report wrong. But, guess what ! My score was 7.2. Then when seeing a hematologist for my blood clotting problems, the doctor did a uric acid test -- score 7.5 and that report went to my GP office --- they tested me within 2 weeks of the hematology test and that one came out 7.8. So, then i got a call from the GP office that they are giving me the diagnosis of Gout and ordered meds. Now, I have been going thru this struggle with that doctor/staff and for over 6 months with this issue and I am getting ready to move on to another medical practice because of having to go thru struggle just to get decent health care. I am 76, in chronic and acute pain daily and even as I try to help the health care profession to help me, it is resistant to doing it adequately -- of course, insurance is driving a lot of medical professionals to resist more tests and more diagnosis and more treatments because of their reluctance to pay. I used to be a clinical social worker was an insurance provider and I get it -- but my ethical code said I had to do the best for each client regardless of my frustrations or desire to just not go the extra mile to challenge the insurance companies. Well, I will tell you this -- it is more than worth it to participate in DNA research because it has validated all of the hard-learning self knowledge about my body and health that I have told doctors about my history for years. And when I have taken the DNA reports to my cardiologist, my hematologist, and pulmonologist, they all said it made sense to show them. The only resistant group has been the general practitioner group. Good luck with your venture to find the best care that you can get !

Jump to this post

@gypsyfaith Good for you! This is a good lesson and you were right to fire your doctor for one who will listen. Pain can come from many sources and a provider assuming that they understand the issues when they won’t consider something outside of their expertise is not good medicine. The good multidisciplinary medical facilities like Mayo and others do this and consult with others about your case.

REPLY
cindisue | @cindisue | 4 hours ago
In reply to @ga29 "I sympathize with you for your GP’s resistance to your description of pain throughout. I have..." + (show)
@ga29

I sympathize with you for your GP’s resistance to your description of pain throughout. I have just been through similar from my last appointment to discuss my long term cervical pain and the returning lumbar pain as well. I was so disappointed by his dismissive attitude towards what I was trying to tell him, I’ve made an appointment with another NS at a hospital close by.

I have to say this is very frustrating as he did my last fusion in 2023, which felt so successful then.
He ordered a spect nuclear bone scan of my cervical area, and a full MRI of my neck and lumbar areas in May.
He asked me my symptoms at my appointment in June, when I said the worst was a shocking pain lasting only seconds that blasts up my left side of the neck and down, into my shoulder, and my pain is mostly on my left side down my leg, into my foot and toes. My last MRI ‘s show a number of problems such as bone spurs, bulging discs, mild to moderate stenosis, flattening of cord around c5-6, c7, even some activity at left side c2-3.

His response was this does not match your MRI, the damage is to the right side. The shock does not come from your neck, and that was essentially the end of his listening. I never got to the rest, really, other than my pain wrapping around my neck giving me headaches. Pain when turning my head up and down like when I’m in church trying to follow along, shock-like pain.
When I did a search right here on our Mayo forum, I found something called Lhermitte’s sign? Is that correct, which describes my pain exactly!
I feel so upset when a highly skilled doctor just doesn’t listen, his views are narrow and perhaps he thinks I’m an old lady who just has arthritis.
I won’t give up, I’m determined to find answers to my neck pain.

Jump to this post

ga29, you are Exactly Right! DO not give up!! If that male doctor doesn't listen, find a doctor who will! I suggest a female doctor. In general, they listen better. In my experience, alot of male doctors are narrow minded and think they know it all. I switched to a female doctor and am SO GLAD I did!! I did my own research and found a med that works excellent for 1 of my issues. But I was very lucky when I had leg/hip pain, because the xrays and MRI showed severe osteoarthritis of my left hip. Had the Anterior Total Hip Replacement surgery and it turned out very very successful. I am back to normal and have no pain now. Thanks to my excellent surgeon. Good luck!

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