RLS or something else? Part 2

For everything and anything else not covered in the other RLS/WED sections.
SnappyK
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RLS or something else? Part 2

Postby SnappyK » Sat Jan 02, 2016 8:58 pm

Hello! Last April I came here looking for help when I was dealing with something very RLS-like (viewtopic.php?t=9259). My primary doc thought I was suffering from a magnesium deficiency due to worsening IBS, and she told me to take Culturelle probiotics every day. The probiotics helped a lot and the leg pain mostly went away. Around that time, I started having foot pain, which turned out to be plantar fasciitis, and then I got a metatarsal stress fracture. I spent a month in a walking boot and did physical therapy. Just about the time that the plantar fasciitis wasn't hurting any more, I started having severe burning in that heel, and then the other heel too. The burning was severe enough that it was often hard to walk. I was diagnosed with achilles tendinitis, worse in my left ankle, but when it didn't get better after several weeks of physical therapy, I got an MRI, which showed that my left ankle and foot were fine. The orthopedic doctor thought it was a nerve issue and wanted to operate without having any diagnosis; I saw a neurologist, who did various tests that showed nothing wrong, and she diagnosed me with "pain in limb" and prescribed Lidocaine patches for my heels. She said my nerves in my heels were inflamed and the burning would go away over a period of months.

That was September. The heel pain went away in several weeks, but the occasional leg pain I was having has become much worse. I am now in worse shape than I was when the RLS-like symptoms started in February. I have intermittent pain throughout the day and evening; the only time I am usually pain-free is in the middle of the night. I have an urge to move whatever is hurting, but it hurts more to move it than it does to stay still, so it's making me crazy. Sometimes the pain is definitely muscular (especially calves), sometimes the pain is definitely bone (especially ankle), sometimes the pain is in my foot and I can't tell what's hurting. Sometimes the pain is a dull ache, sometimes a bit stronger, and sometimes very sharp stabbing pains. The pain is in both legs and it comes and goes all the time, moving around between feet and heels and calves and sometimes knees and even sometimes thighs. I can be in major pain one minute and hardly any pain the next.

It is significantly different from the RLS-like symptoms I was having early last year. Those symptoms were much more constant and reliable. The current symptoms are mostly unpredictable. The current symptoms are also not alleviated by walking. So here I am, feeling like I'm back at square one. I have a range of pain symptoms in my lower body, which don't seem to correspond well to any known ailment. The orthopedic surgeon and neurologist don't really have any idea what's wrong with me. I was willing to give the burning heel pain some time to die down, and it did, but this is quite different and it's getting worse. It's reaching the point where it's hard for me to work. The diagnoses that seems to be closest to what I'm experiencing are RLS and lumbar degenerative disc disease (DDD), but neither is a great fit. I have had previous lumbar disc problems, so I have left a message for my spine doctor to see him and determine if the pain I'm having is being caused by my spine. The odd thing is that pain caused by the spine typically goes from the buttocks down the legs, and this pain is going in the other direction. If the spine doctor rules out my discs as the cause of the pain, where do I go? Rheumatologist? IBS specialist? RLS specialist? I'm really lost at this point. Any words of wisdom would be appreciated.

ViewsAskew
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Re: RLS or something else? Part 2

Postby ViewsAskew » Sun Jan 03, 2016 8:00 pm

Sounds very frustrating.

RLS, as you noted, isn't a good fit. I hope someone else has ideas. I'm going to mull awhile and see if anything pops up for me - my initial thought is to look at musculoskeletal pain causes and see if anything stands out and then go to a doctor who oversees that.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

SnappyK
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Re: RLS or something else? Part 2

Postby SnappyK » Fri Jan 08, 2016 12:23 pm

Thanks for the response. I was pretty miserable throughout the holidays, with pain most of the time somewhere in my lower body. I started back to work four days ago, and the pain is 90% gone. Instead of sitting on my couch or someone else's couch all day, I am sitting in my supportive office chair. I haven't changed my diet or meds or anything else. It's *got* to be something with my back. What's weird is that until recently, I had no back pain at all. It's been getting a little sore the past few weeks, which is what got me thinking that it might be a spine issue. And now that being back in my office chair is making a big difference, that makes a lot more sense. I see the spine doctor next week and am hoping for some words of wisdom (probably physical therapy, at a minimum).

Polar Bear
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Re: RLS or something else? Part 2

Postby Polar Bear » Fri Jan 08, 2016 4:46 pm

Happy to hear that you feeling more positive.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Sojourner
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Re: RLS or something else? Part 2

Postby Sojourner » Sat Jan 09, 2016 5:51 am

Ditto.

wishing all who visit here some peace this night
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SnappyK
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Re: RLS or something else? Part 2

Postby SnappyK » Wed Jan 13, 2016 2:44 pm

Well, the good news is that I don't have restless legs syndrome. The bad news is that (preliminary diagnosis) I have two unrelated spinal problems. I already knew that I had a degenerated lumbar disc from a diagnosis in 2010, and I had new x-rays done this morning. That disc has gotten much worse, and it could definitely be causing a lot of the leg pain that I've been having. However, based on other things I mentioned, the physician assistant tested my reflexes and found them to all be abnormal (overly responsive). I am also having worsening problems with what I thought was irritable bowel syndrome, and occasional numbness in my hands, and I have a history of bending my neck forward causing ocular migraines. I had no idea these things were all related, but the PA thinks that I have cervical spondylosis with myelopathy. This is bad, bad news. If the diagnosis is correct, I am probably going to need cervical surgery to prevent it from getting any worse and disabling me. My balance is already being affected. Odds are I won't have any improvement with or without surgery, but odds are I'll continue to get worse without surgery. Anyway, I'm waiting for my insurance company to approve the MRI so I can get a spinal scan done and get opinions on how to proceed.

Thanks to all of you for your support during my occasional visits over the past several months. Hopefully the information I'm putting here will be of help to someone else in the future who is going through what I'm going through.

ViewsAskew
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Re: RLS or something else? Part 2

Postby ViewsAskew » Thu Jan 14, 2016 5:07 am

SnappyK, I wish you all the best. Whatever happens, do let us know. About a year ago, my brother was in a similar situation. he, too, thought it was RLS - it's in the family and he has a mild case. But, it was in his hands, he had numbness, and so on. He didn't go for help for a couple years because he was sure it was RLS. Finally, he lost use of his hand and work laid him off. A doctor found the true cause - different than yours, but also required surgery and could have had a poor outcome. The surgery was last fall and he was golfing about two months later! Here's wishing the same outcome for you.

We, as a board, maybe should find a place to put posts such as yours. The more people become aware of RLS, the more often we will have cases such as your - people who think it could be (or who are even misdiagnosed). Posts such as your absolutely can help someone else. Thank you.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

SnappyK
Posts: 39
Joined: Sun Apr 26, 2015 6:25 pm

Re: RLS or something else? Part 2

Postby SnappyK » Fri Jan 15, 2016 12:45 pm

Thanks, ViewsAskew. At this point I am scared to death. Every little thing that I feel is making me worry. I want to get an MRI right this second so that I know what is going on and what I should be doing. I am terrified that waiting a few weeks, even a few days, is going to cause more damage and reduce the quality of the rest of my life.

Anyway, enough of me freaking out! I absolutely agree that it would be great for the board to have a place for cases like mine. It truly started as being quite RLS-like, and over time it's evolved into something else altogether. The main sensation has been burning in my heels, but there's also been stabbing in my ankles, dull aching in my feet, and soreness in my calves. Sometimes I even have pain in my knees and thighs. Sometimes my whole foot feels cramped up for a minute, and then all of a sudden the pain is gone. Sometimes the pain hurts in one place for hours on end, sometimes the pain comes and goes from spot to spot every few minutes. Sometimes several parts of my feet and legs are hurting, each with a different kind of pain all at once. I feel compelled to move my legs, but that generally makes the pain worse, so I try to resist the urge. Sometimes it's like my ankles have gotten stuck and I can't move my feet much at all...it's as if I'm really trying hard to turn them and they just won't turn. The pain can come on at any time, but it generally gets worse throughout the day. Once I go to bed for the evening, the pain gradually goes away, and by morning I have little pain if any.

I have learned through my own research this week that while the most likely diagnosis for me is cervical spondylosis with myelopathy, the most likely alternatives are multiple sclerosis and ALS. Given the three possibilities, I have to hope for the first diagnosis. I never thought I would be hoping for spinal cord compression!

Polar Bear
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Re: RLS or something else? Part 2

Postby Polar Bear » Fri Jan 15, 2016 12:57 pm

Thank you SnappyK. I wish you well and hope you get an speedy MRI appointment.
A condition is easier to bear once we know what it is - the unknown is fearful.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Sojourner
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Re: RLS or something else? Part 2

Postby Sojourner » Sat Jan 16, 2016 6:36 am

Hope you're having a better night of it, SnappyK.
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SnappyK
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Joined: Sun Apr 26, 2015 6:25 pm

Re: RLS or something else? Part 2

Postby SnappyK » Mon Jan 18, 2016 11:27 pm

Thanks, everybody. Insurance approved my MRI this afternoon, I'm getting the MRI on Wednesday night, and I see the spine doctor on Thursday morning. I'll let you know what diagnosis I end up with.

Polar Bear
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Re: RLS or something else? Part 2

Postby Polar Bear » Tue Jan 19, 2016 9:16 am

Good luck.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
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Re: RLS or something else? Part 2

Postby ViewsAskew » Wed Jan 20, 2016 4:18 am

I almost always feel better after I know...even if I don't like the outcome, I know what to fight and how to move forward.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Sojourner
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Location: USA

Re: RLS or something else? Part 2

Postby Sojourner » Wed Jan 20, 2016 6:55 am

Hard to know which road to take if you don't know what steet you're on.
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Polar Bear
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Re: RLS or something else? Part 2

Postby Polar Bear » Wed Jan 20, 2016 8:05 pm

Sojourner - What a brilliant expression !!
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation


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