Not Sure I have RLS
Not Sure I have RLS
Could use some advise from experienced RLS patients. I have had tingling in my feet and ankles for a long time. Recently the tingling has moved up my legs to my knees and slightly beyond. On Monday night of this week I began noticing my muscles twitching or cramping or moving under my skin. As I would relax and try to dose off I would be awakened by the sensation of my body moving. It was not just my legs, but my arms too. I had a very bad night. My anxiety level with way up. My mother -n- law died of ALS and I had it in my mind that is what I am dealing with too. I made an appointment the next day and my internist suggested RLS. He put me on klonopin for the anxiety and he said it would help the leg symptoms. I took it last night and slept like a baby and did not notice any twitching or tingling. Could it be RLS? I do not have the severe jerking I've heard some of you have. I did notice small jerks maybe two. Thanks for listening. Praying it is not ALS or MS.
Hi, Sadie--
Could definitely be RLS. Tingling, buzzing, creeping and crawling. Feet, legs, arms. Jerking or not jerking. If it's happening mostly late in the day (or worse then, if you're having it 24/7 like I do sometimes), and if it's somewhat temporarily relieved by movement... that's all within the "typical" RLS symptomology.
Sorry you're having a tough time, but glad the meds seem to be working so far. Others here have experience with those, so they can talk to you about that. I'm still med-free by choice.
You mentioned your anxiety going through the roof. Are you prone to anxiety anyway, or were you just (understandably) freaked out thinking it was ALS? (Someone we know just died of ALS last month.) I just ask because I and a few other here have chronic anxiety disorders, and that's something we've discussed around here before. RLS isn't necessarily "connected" to my anxiety disorder, but I think that they sometimes feed one another... and obviously I have some general "brain/body chemistry problems", since I have several conditions related to brain and body chemical levels and fluctuations.
Well, take care and good luck to you!
Sara
Could definitely be RLS. Tingling, buzzing, creeping and crawling. Feet, legs, arms. Jerking or not jerking. If it's happening mostly late in the day (or worse then, if you're having it 24/7 like I do sometimes), and if it's somewhat temporarily relieved by movement... that's all within the "typical" RLS symptomology.
Sorry you're having a tough time, but glad the meds seem to be working so far. Others here have experience with those, so they can talk to you about that. I'm still med-free by choice.
You mentioned your anxiety going through the roof. Are you prone to anxiety anyway, or were you just (understandably) freaked out thinking it was ALS? (Someone we know just died of ALS last month.) I just ask because I and a few other here have chronic anxiety disorders, and that's something we've discussed around here before. RLS isn't necessarily "connected" to my anxiety disorder, but I think that they sometimes feed one another... and obviously I have some general "brain/body chemistry problems", since I have several conditions related to brain and body chemical levels and fluctuations.
Well, take care and good luck to you!
Sara
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Guest
not sure I have RLS
Sarah,
Thank you for your reply. I have not had an anxiety problem. I think just the thought of possibly having ALS to deal with after watching my mother-n-law die for 2 years freaked me out. I made an appointment the next day with my physician. (I haven't seen a doctor in over 10 years).
Are the symptoms that acute? One day you seem fine and the next day your not so fine. Or, did I miss something like the tingling in my feet?
If you are not having the leg jerking while sleeping, how is RLS diagnosed?
I would think the sleep study would not be the correct diagnostic tool.
Thank you Sara for all you help. My anxiety level has decreased substantially since I now know that my symptoms are probably not that of ALS.
Thank you for your reply. I have not had an anxiety problem. I think just the thought of possibly having ALS to deal with after watching my mother-n-law die for 2 years freaked me out. I made an appointment the next day with my physician. (I haven't seen a doctor in over 10 years).
Are the symptoms that acute? One day you seem fine and the next day your not so fine. Or, did I miss something like the tingling in my feet?
If you are not having the leg jerking while sleeping, how is RLS diagnosed?
I would think the sleep study would not be the correct diagnostic tool.
Thank you Sara for all you help. My anxiety level has decreased substantially since I now know that my symptoms are probably not that of ALS.
New to RLS
I knew I had RLS because i experienced it when I was pregnant 20 years ago so I knew what it was when it started 4 years ago. I am thrilled to have discovered this discussion board because I don't know anyone else with this hellish torture! Mine has gotten worse over the years and I now have it everyday and it is now also painful. I understand the fear that it might be ALS because I thought maybe I had MS-until a few minutes ago when I started reading these postings I didn't know that pain was common among RLS sufferers.
wendy
Hello again, Sadie... Welcome, Wendy!
Yes, pain CAN be a part of it. Yes, jerking CAN be a part. But neither are necessary. Wendy's experience of RLS worsening with age is typical, too.
I had it for years, but never thought it might be ANY "real condition"... I just thought it was "me". (I wasn't knowledgeable enough in my 20s and early 30s to even think of MS or ALS or anything like that.) It was starting to be more and more of a problem in my 30s when I happened to hear about it from a friend completely by coincidence. Now, I have it to some degree pretty much every afternoon/evening, and many days I feel it all day long anytime I sit or stand still for any period of time. I have no pain and no real jerking in my sleep problem. I just cannot stand to sit still from the distressing sensations in my feet and lower legs.
Sadie, you're right, obviously the sleep test isn't the best diagnostic test for all of us. I actually sleep better than most folks here, as long as I go to bed early in my symptoms. My RLS problem isn't a "sleep" problem, it's a quality of life problem.
It CAN come and go quite a bit, too. It can also be exacerbated to a fever pitch by injury, medications, illness, surgery, pregnancy, etc., too, evidently. The tingling you described "for a long time" was probably RLS all along, but it wasn't bad enough to bother you, maybe. Or you attributed it to other things as many of us have.
But sometimes even after a pretty horrible spell of RLS, it can also ease up a bit. I had a really bad bout of 24/7 intense symptoms, and I found this forum. I thought, "Oh brother, this is what the rest of my life will be like. My condition has progressed and now I'm in real trouble." But after two weeks, with no treatment/drugs/etc. on my part, it eased up again. Since then I DO have 24/7 RLS periods, probably once a month for a week at a time or so, but it's not been anything near what I feared was ahead.
Hang in there, ladies! Nice to "meet" you but wish it was under more "comfortable" circumstances!
Sara
Yes, pain CAN be a part of it. Yes, jerking CAN be a part. But neither are necessary. Wendy's experience of RLS worsening with age is typical, too.
I had it for years, but never thought it might be ANY "real condition"... I just thought it was "me". (I wasn't knowledgeable enough in my 20s and early 30s to even think of MS or ALS or anything like that.) It was starting to be more and more of a problem in my 30s when I happened to hear about it from a friend completely by coincidence. Now, I have it to some degree pretty much every afternoon/evening, and many days I feel it all day long anytime I sit or stand still for any period of time. I have no pain and no real jerking in my sleep problem. I just cannot stand to sit still from the distressing sensations in my feet and lower legs.
Sadie, you're right, obviously the sleep test isn't the best diagnostic test for all of us. I actually sleep better than most folks here, as long as I go to bed early in my symptoms. My RLS problem isn't a "sleep" problem, it's a quality of life problem.
It CAN come and go quite a bit, too. It can also be exacerbated to a fever pitch by injury, medications, illness, surgery, pregnancy, etc., too, evidently. The tingling you described "for a long time" was probably RLS all along, but it wasn't bad enough to bother you, maybe. Or you attributed it to other things as many of us have.
But sometimes even after a pretty horrible spell of RLS, it can also ease up a bit. I had a really bad bout of 24/7 intense symptoms, and I found this forum. I thought, "Oh brother, this is what the rest of my life will be like. My condition has progressed and now I'm in real trouble." But after two weeks, with no treatment/drugs/etc. on my part, it eased up again. Since then I DO have 24/7 RLS periods, probably once a month for a week at a time or so, but it's not been anything near what I feared was ahead.
Hang in there, ladies! Nice to "meet" you but wish it was under more "comfortable" circumstances!
Sara
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Guest
Hey Sadie, This is Lyndarae not only do we have rls in common but we both know Alex!!!!!!!!!!!!!! I suggested he come here and learn a little more about Rls before he comes to visit and he saw your name WELCOME GIRLFRIEND I am an old timer here so glad you found us, this is one big family with losts of love and understanding looking forward to getting to know you~~~~~~~~~~~~~~~~`Lyndarae
Not sure I have RLS
So, how is RLS diagnosed? Is it just by symptoms, history, and response to medications?
Sadie
Sadie
Not sure I have RLS
So, how is RLS diagnosed? Is it just by symptoms, history, and response to medications?
Sadie
Sadie