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Old 03-17-2013, 08:58 AM   #16
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Re: Crazy muscle pain/cramps/spasms that get worse when laying down???

Hello,

So sorry for all of the pain you are going through! I can't diagnose you, but it sure sounds like something nerve related, especially since you said you had numbness. I don't have any experience with spinal taps, but i have lots of experience with back, neck, nerve pain, nerve symptoms, cramps, and spasms.
It sounds like it could also be sciatica, which is actually a symptom of something. So it could be sciatica....but caused by what. I have had sciatica caused by spinal stenosis and disc herniations. When I had it in my left leg, it was in the middle of night one night when I suddenly woke up having to use the restroom. I was still half asleep, so wasn't sure what was going on , but had problems moving my left leg. I sort of rolled out of bed, then almost fell and suddenly woke up completely. I almost fell because my entire left leg was completely numb. No feeling whatsoever. Well, then the pain kicked in. Needless to say, I had severe sciatica caused by scar tissue (from a spine surgery) that was stuck inside one of the openings where the nerve runs through, so my nerve was being completely squooshed. This caused much of the symptoms you described. It caused me almost complete numbness of my leg for about 3 months (I had gotten back small feeling in a small area of my left foot); The cramps & spasms were unbearable. Sometimes the nerve pain would be awful, other times the pain itself wasn't too bad, but the twitching, cramps and spasms all down my leg were awful. It went from my rear end all the way down to my foot. Some days the pain would be down the entire length, other days the pain might only be in my lower leg, sometimes just around my knee, other times in my outer ankle. The area would also twitch constantly and you could literally SEE it twitching and moving. When the pain was in my ankle, I felt as if someone was using an electric hammer, pounding long, thick nails into my ankle all day. When the pain was along the entire length of my leg, I felt as if someone sliced me open that whole length, and was constantly pouring rubbing alcohol right into it. The pain was just unbearable. It's also a flag when you say it gets worse when laying down, so that sounds like it's positional....it could be that, for example, if you have a disc bulge or herniation, you might not necessarily feel pain from it until you lay down. If it's herniating to the back or to the right/left and back, it would hurt more if you lay down flat on your back. If you bend forward, it might feel better. I just had a disc pop last weekend, and the pain was to the left only. If I bent my torso to the right, it felt a lot better. Trying to straighten or bend to the left was agony and instantly would start the spasming.

Luckily, my MRIs did show what was causing my sciatica. I know you said you had an MRI that didn't show anything, but that does not necessarily mean there is no disc herniation, bulge, or compression. MRIS do not see everything...and the person that reads & interprets the MRI doesnt always see everything. Not to mention, the person who read the MRI might not even have much, if any, experience with spine problems. I have already had spine surgery, and when they went in, there were many more issues they had to fix than what showed up on my MRIs. Also, sometimes, what appears to be nothing on MRI might still actually cause you pain. Of course it could be something else entirely, but just wanted to let you know experience and how similiar it seems to what you describe.

I hope your doctors are able to help you soon and you find some relief!

 
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Old 03-17-2013, 09:37 AM   #17
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Re: Crazy muscle pain/cramps/spasms that get worse when laying down???

I've been reading about arachnoiditis (?) and it does sound like a possibility. I remember my first spinal block in 2003 was the worst part of my entire 3 day labor and delivery. I guess they went through a nerve because it felt just like I had been electrocuted down one leg. None of my last 3 spinal blocks were remarkable. I was also reading about heretitary neuropathy, HNPP and Charcot Marie tooth, which I had originally ruled out since neither of my parents or grand parents have been diagnosed with anything but I realized that my mother had a back injury when she was only 13 and she now suffers from diabetic neuropathy. Also my maternal grandmother has had RA since childhood so it would make since that heretitary neuropathy could go unnoticed through multiple generations. I don't know if any of you are familiar with CMT but I have always noticed that my feet were all messed up and that happens to be a symptom, lol.
I have the high arches and my little toes are what they call hammer toes. My mother told me that I was extremely pigeon toed as a child until she bought me glittery slippers that would scratch my anckles bloody if I didn't spread my feet when walking. Maybe I'm over analyzing but I've always had pins and needles and buzzing and "shocks" with certain movements and just assumed they were normal. I posted on the neuro board but haven't received any response. I get shocks in my wrist if I grip something tightly, I get shocks in my shoulders down through my fingertips if I swing my arms too far behind my body, I get shocks behind my knee to my feet when I stand up from kneeling, I get shocks in my neck if I turn my head quickly. All of these things I assumed were normal so I just try to avoid motions that provoke my "shocks".

 
Old 03-17-2013, 10:39 AM   #18
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Re: Crazy muscle pain/cramps/spasms that get worse when laying down???

Megan- I have high arches as well and hammer toes. I saw a foot doctor long ago who told me this about my toes.
I do have a few of the symptoms you have...I did not receive a spinal block with my labors but I did have epidurals. I am GLAD You got a an MRI. That should give you some answers.
Please let us know what it says!!

My leg cramps came back last night-- now in my feet and toes- constant. I did everything the same (as the two days before when I didn't have any in the middle of the night) And my left leg has a constant buzzing type feeling inside it..like you described. I think my problem may the heel lift I am wearing on my left leg. I am not going to wear it today. I like to workout with it on but decided to not workout today.I am self diagnosing myself as well since my doctor only prescribes me meds and does blood work which all comes back normal. Honestly I can't afford anymore testing. I will talk to my Chiropractor tomorrow about this heel lift.

I TRULY hope your day goes well today Megan!! ((hugs))

 
Old 03-17-2013, 01:39 PM   #19
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Re: Crazy muscle pain/cramps/spasms that get worse when laying down???

Megan, When you say that when they gave you spinal blocks were they epidural or the old saddleblocks, was medicine injected into your spinal fluid?

 
Old 03-17-2013, 01:51 PM   #20
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Re: Crazy muscle pain/cramps/spasms that get worse when laying down???

I have no idea what saddle blocks are. I assume it was the same medicine that they use for epi's just in a single dose without a catheter.

 
Old 03-17-2013, 02:24 PM   #21
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Re: Crazy muscle pain/cramps/spasms that get worse when laying down???

Me either but i think they just shot numbing medicine in between vertebrae maybe into CSF maybe into epidural space. Adhesive arachnoiditis is caused when medicine, blood, dye or an "epi" dural,( the needle goes into epidural space "before" reaching the dura & the medicine is deposited there) turns into an "intra"dural( the needle is pushed through the dura &the medicine is deposited in CSF) whether on accident or on purpose or too many epidural steroid injections, too many surgeries on back & the spinal nerves react, swell, scar the spinal nerves together & eventually they become one with the dura. It would be helpful to know where the medicine was injected but in any case the phrase " clumping of nerve roots" on MRI is considered diagnostic evidence by arachnoiditis specialists drs. When you get the MRI results are you making an appt to see a spine surgeon?

 
Old 03-19-2013, 07:21 AM   #22
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Re: Crazy muscle pain/cramps/spasms that get worse when laying down???

My lumber MRI was normal. I don't know what to think now.

 
Old 03-26-2013, 05:28 AM   #23
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Re: Crazy muscle pain/cramps/spasms that get worse when laying down???

[QUOTE=MeganY24;5149113]My lumber MRI was normal. I don't know what to think now.[/QUOTE]

Hi megan, I just saw that your MRI was normal. From 1988 until 2012 i had arach on my MRI's & my NS nor my PM dr told me! I just trusted my neurosurgeon when he said all was fine, normal for me, & the whole time Im in pain mgmt having epidural steroids & taking narcotics for failed multiple back surgeries, no clear diagnosis & i had a diagnosis alright, adhesive arachnoiditis. In 2012, i saw a new NS because my old one retired, he told me so when i get home & check my medical record there it is, on MRI reports, letters between specialists, OR reports. I will never just trust a dr to tell me the results of tests again & now i get a disk of the MRI & radiologist report for my own records, copies of lab & other tests. I dont know if you are still having problems but did you read the MRI report yourself? I truly hope that it is normal & absolutely no arach but i wanted you to know my story & why i think its important to see the report with your own eyes.

Last edited by gmak; 03-26-2013 at 05:30 AM.

 
Old 03-26-2013, 07:47 AM   #24
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Re: Crazy muscle pain/cramps/spasms that get worse when laying down???

I did get a copy of the report and it said i have scoliosis. I didn't have scoliosis 10 years ago when I was 16 so I'm not sure why I have it now.

 
Old 03-26-2013, 11:09 AM   #25
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Re: Crazy muscle pain/cramps/spasms that get worse when laying down???

Megan- SAME HERE. i never knew i had scoliosis until a few months ago when my low back was jacked up and i got x rays through my chiro. he says i have always had it and prescribed me a heel lift. i'm not sure i need it. i think scoliosis can happen after certain trauams, injuries or whatever. i have had 3 children... i think it happened when my pelvis tilted when i was pregnant, or giving birth.

have you had any kids?

 
Old 03-27-2013, 07:24 AM   #26
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Re: Crazy muscle pain/cramps/spasms that get worse when laying down???

I've had 4 children but I had a full spine MRI when I was 16 and I did not have scoliosis. As far as I know I haven't had any injuries and I don't have osteoporosis.

 
Old 03-27-2013, 10:53 AM   #27
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Re: Crazy muscle pain/cramps/spasms that get worse when laying down???

Megan, did the doc run blood work on your iron levels?
I just found out I am totally anemic! And you have some of the symptoms.
My hands too would cramp up and I get a pins and needles type feeling in feet and legs at times.. plus muscle spasms and cramps among other things. These are all related to low iron. Since you had a baby 7 months ago this could be the factor. When I was pregnant with all three of my kids I had low iron and took iron supplements. Now my doc has me on a high dose which frightens me but if it's what I need to regulate the levels I am going to take it.

Just a thought!

 
Old 04-18-2013, 10:46 AM   #28
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Re: Crazy muscle pain/cramps/spasms that get worse when laying down???

No expert but after lumbar fusion in 2010 (couldnt walk after so went to rehab for 11 days). Left leg just kept getting worse similar symptoms to yours along with foot drop etch. Went to neurologist, ortho surgeon and pm doc noone saw anything in mris of spine (or hip pelvis) even though had radiculopathy and periperal neuropathy findings in emgs and increasing back and all over pain. Finally a neurosurg looked at mri in march and said he didnt like what he saw but couldnt put his finger on it so asked if I was okay with ct mylogram. said okay and found out I had adhesive sequelera arachnoiditis from original surgery. May want to bring that up but be prepared they dont like to diagnose it as it is usually caused by epidurals , surgery or injections meaning docs are somewhat at fault. hope that helps.

 
Old 04-18-2013, 02:57 PM   #29
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Re: Crazy muscle pain/cramps/spasms that get worse when laying down???

I was meaning to update this thread. I found out two days ago that I tested positive for Lyme disease. I have no idea when or how I got it. I started antibiotics yesterday so hopefully I will get better and have my life back.

 
Old 04-18-2013, 04:05 PM   #30
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Re: Crazy muscle pain/cramps/spasms that get worse when laying down???

[QUOTE=MeganY24;5163733]I was meaning to update this thread. I found out two days ago that I tested positive for Lyme disease. I have no idea when or how I got it. I started antibiotics yesterday so hopefully I will get better and have my life back.[/QUOTE]

Hi megan, Im so glad that the drs found your problem or a diagnosis, not meaning im glad thay you have lyme disease of course but that now there is a solution for you to get better. I hope you get well soon!

 
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