I have been experiencing pain in my legs for the past 4 months. I have not had any of the symptoms anyone described so far except for several times in the past few years when I experienced what I would call "nervous legs". I tried to equate it with too much caffeine.
I went to the Dr. several months ago and thought I would be her easy case for the day. I thought she would say it was all menopausal, due to the fact that I fit into that category. Instead, she got me very nervous by suggesting that I see my gyno. because sometimes leg pain is an early symptom of cervical or uterine cancer.
I went to the Dr. the next day, and he said I was fine.
My pain is almost always at night, but the restlessness is only because I feel better when I move my legs because it relieves the pain.
Does this sound like it could be RLS? It doesn't sound like most people have pain, more an involuntary need to move their legs.
Please give me any input you can. What is my next move? I walk 5 times a week, and for the 1st time tonight I am not walking to see if that helps.
question on pain
Hi BJ
Hi BJ and welcome.
I say if movement helps you may have your answer. Yes, there is pain for some of us with RLS. Some studies suggest that 50% or more of us have pain. I am glad to hear that you got a clean bill of health at the doctors.
Hormones, in our opinion here on the board, seems to play a part in how bad it can get. That is to say that for some of us women, it can play apart.
I'll be real honest and tell you that there aren't many in the medical community that seems to know alot about RLS. It can be treated, it takes time for some to get it right. There are different treatments, both medicines and non-pharm at this point. Most of us use a combination of things that help. Some of us, it takes a while to find that combination.
Did you have growing pains as a child? DID anyone in your family suffer with similar problem? Did they check your blood work at either of the doctor's visits? If you decide that RLS is what you are dealing with, you'll want to read around the board. Everyone of us here is different and require different treatments. Several levels of discomfort, so no matter what level you might find yourself, there's someone here that can understand what your going through.
My guess, from what you've said, is yes, you may have RLS.
I'm sure others will jump in and add their two cents. Wonderful people around here.
Don't be surprised if you have to help educate your own doctor. Unless, the doc already knows how to treat RLS. Education is your best defense with this disorder. The more you know about the diagnosis and treatment the better.
WE'll help and answer any questions we can. GLad you found us.
I say if movement helps you may have your answer. Yes, there is pain for some of us with RLS. Some studies suggest that 50% or more of us have pain. I am glad to hear that you got a clean bill of health at the doctors.
Hormones, in our opinion here on the board, seems to play a part in how bad it can get. That is to say that for some of us women, it can play apart.
I'll be real honest and tell you that there aren't many in the medical community that seems to know alot about RLS. It can be treated, it takes time for some to get it right. There are different treatments, both medicines and non-pharm at this point. Most of us use a combination of things that help. Some of us, it takes a while to find that combination.
Did you have growing pains as a child? DID anyone in your family suffer with similar problem? Did they check your blood work at either of the doctor's visits? If you decide that RLS is what you are dealing with, you'll want to read around the board. Everyone of us here is different and require different treatments. Several levels of discomfort, so no matter what level you might find yourself, there's someone here that can understand what your going through.
My guess, from what you've said, is yes, you may have RLS.
I'm sure others will jump in and add their two cents. Wonderful people around here.
Don't be surprised if you have to help educate your own doctor. Unless, the doc already knows how to treat RLS. Education is your best defense with this disorder. The more you know about the diagnosis and treatment the better.
WE'll help and answer any questions we can. GLad you found us.
Welcome BJ (and howdy Becat!)--
I'm with Becat, especially since the pain is in the evenings, and because "it feels better to move them". Those are two of the "typical" kinds of symptoms.
But as you've heard, we all have a little different experience with the sensations, and different ways of describing them, too. I wouldn't say I have "pain" with my RLS... but it's occured to me some nights when it's very intense, that someone ELSE who had the same sensations I have MIGHT describe it as "pain". (Sometimes I'm not sure WHAT to call it... but it sure does HURT!
) I think that I categorize the sensations as "RLS" (and before that, it was just "my foot thing" 
), so I don't think of them as "pain"... it's just worse of whatever that feeling I always had was.
Then there are others here that I know have sensations that couldn't be classified by ANYONE as anything but pain. Not sure if it's totally different, or just horribly "worse" or what. Just wish I could make it go away for all of my dear friends here.
Keep reading and keep posting, and I think you'll start to get a better feeling for what RLS is and what it isn't. I think you may well be in the right place, and whether you decide you have RLS or not, you're more than welcome here.
At the VERY least we can all empathize with what you described!
Take good care.
Sara
I'm with Becat, especially since the pain is in the evenings, and because "it feels better to move them". Those are two of the "typical" kinds of symptoms.
But as you've heard, we all have a little different experience with the sensations, and different ways of describing them, too. I wouldn't say I have "pain" with my RLS... but it's occured to me some nights when it's very intense, that someone ELSE who had the same sensations I have MIGHT describe it as "pain". (Sometimes I'm not sure WHAT to call it... but it sure does HURT!
) I think that I categorize the sensations as "RLS" (and before that, it was just "my foot thing" ), so I don't think of them as "pain"... it's just worse of whatever that feeling I always had was.
Then there are others here that I know have sensations that couldn't be classified by ANYONE as anything but pain. Not sure if it's totally different, or just horribly "worse" or what. Just wish I could make it go away for all of my dear friends here.
Keep reading and keep posting, and I think you'll start to get a better feeling for what RLS is and what it isn't. I think you may well be in the right place, and whether you decide you have RLS or not, you're more than welcome here.
At the VERY least we can all empathize with what you described!
Take good care.
Sara
-
bj
Thanks so much to those that replied to me. One of you mentioned blood work. What tests shoud I have? I am going tomorrow and would love to know what to ask for when I do go, as the Dr. won't be there, only the nurse.
Also, someone mentioned hormones. Don't really understand the possible conncection. i don't take anything now. Does HRT make it better or worse?
Thanks again for all your help.
Also, someone mentioned hormones. Don't really understand the possible conncection. i don't take anything now. Does HRT make it better or worse?
Thanks again for all your help.
-
ViewsAskew
- Moderator
- Posts: 16585
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
Hi BJ. Ask them to test your ferritin levels. Your doctor may be skeptical, but there is a correlation for some people. In people with RLS, the experts suggest ferritin levels of at least 45-50. The range is usually around 15 or 20 to 225 to 250. If yours is over 50, then taking will probably have little impact. If it is below 50, taking 325 mg of iron 3 times daily will increase it slowly. For some people, gettting it to 50 eliminates RLS. For some it reduces it. For the remainder, it doesn't do anything.
Per the hormones, I think that Becat meant that many of us (women) on this message board have discussed RLS being worse at certain times in the cycle, hence a suggested link to our hormone levels.
Good luck at your appointment tomorrow.
Ann
Per the hormones, I think that Becat meant that many of us (women) on this message board have discussed RLS being worse at certain times in the cycle, hence a suggested link to our hormone levels.
Good luck at your appointment tomorrow.
Ann
-
Sleepyhead
- Posts: 12
- Joined: Wed Mar 16, 2005 3:30 pm
- Location: Missouri
Hi to BJ
Hi BJ,
Although I just joined this group, I have been on the sidelines for quite a while. I have had RLS all of my life going back to "growing pains" when I was around 5yrs. to my present 55yrs. Around 10yrs. ago when I first started Menopause my RLS went bonkers & so did I. Time for action!
I decided to find a Dr. who would tell me more than: "Quinine helps some people" and "Try more calcium in your diet" to my favorite "Maybe this is all in your head". I made calls to Neurologists ofifces & asked how that particular MD treated RLS,not an easy answer over the phone. When I did get a sympathetic person telling me to at least see the Dr. for a consult, I finally made an appointment. I now see a sleep disorder specialist and have been on Mirapex for the past 5yrs.
If there is anything I have learned about RLS is that the patient needs to be pro-active and know about treatment options because the medical field as a whole, knows so little about this disorder. This is the perfect forum to learn about RLS. Who is more willing to share their experiences than a fellow sufferer. I wish you luck at your appointment tomorrow. Don't give up on yourself!!
Although I just joined this group, I have been on the sidelines for quite a while. I have had RLS all of my life going back to "growing pains" when I was around 5yrs. to my present 55yrs. Around 10yrs. ago when I first started Menopause my RLS went bonkers & so did I. Time for action!
I decided to find a Dr. who would tell me more than: "Quinine helps some people" and "Try more calcium in your diet" to my favorite "Maybe this is all in your head". I made calls to Neurologists ofifces & asked how that particular MD treated RLS,not an easy answer over the phone. When I did get a sympathetic person telling me to at least see the Dr. for a consult, I finally made an appointment. I now see a sleep disorder specialist and have been on Mirapex for the past 5yrs.
If there is anything I have learned about RLS is that the patient needs to be pro-active and know about treatment options because the medical field as a whole, knows so little about this disorder. This is the perfect forum to learn about RLS. Who is more willing to share their experiences than a fellow sufferer. I wish you luck at your appointment tomorrow. Don't give up on yourself!!
-
Lovechild3113
- Posts: 24
- Joined: Sun Mar 27, 2005 7:20 pm
Hi BJ
My name is Jamie. I have had RLS for almost a year now. I am on ultram and neurontin for my RLS. I am so confused though because no one really describes their pain as true PAIN. My legs hurt so bad if I am not on my meds, and not just at night, all day long. What all has your doctor told you about RLS? My doctor, nuerologist, told me that taking iron supplements sometimes helps, but I know it won't. The only thing that has helped me is pain pills. Do you know of anyother leg problems their are out their?
Jamie
Lovechild3113@aol.com
Lovechild3113
Jamie
Lovechild3113@aol.com
Lovechild3113
Jamie Wilderman
Hi Love Child
HI Lovechild and welcome,
Yes, it is true pain with me. It's deep inside my legs, it's real. I use pain medications as well. However, there are some that don't have pain. There are some that don't use medications. There are so many different ways to explain RLS. Each of us is different. Pain meds can be hard to come by for many on the board. So there are a ton of medications being used here. Most find a combination of things that work for them.
About Iron, yes, iron can help, not everyone, it's a long process to build your iron. Don't expect any mojor changes to happen to soon. As long as your doctor is helping with it. Go for it. The doctor should check your blood often when your iron levels start to rise. You need to make sure your body is using what you give it and your not building up too high of a level.
Yes, there are other reasons for leg pain. Fibro could be one. Injury...etc. But the pain people tend to talk about here is probably like yours. There are some studies that point out that 50 % or more suffer with pain. Painless RLS or not, it's all torture just the same.
I'm sorry you had to find us, but glad your here now. We have some wonderful people around here. We educate, share, learn, support one another. Welcome to the board.
Yes, it is true pain with me. It's deep inside my legs, it's real. I use pain medications as well. However, there are some that don't have pain. There are some that don't use medications. There are so many different ways to explain RLS. Each of us is different. Pain meds can be hard to come by for many on the board. So there are a ton of medications being used here. Most find a combination of things that work for them.
About Iron, yes, iron can help, not everyone, it's a long process to build your iron. Don't expect any mojor changes to happen to soon. As long as your doctor is helping with it. Go for it. The doctor should check your blood often when your iron levels start to rise. You need to make sure your body is using what you give it and your not building up too high of a level.
Yes, there are other reasons for leg pain. Fibro could be one. Injury...etc. But the pain people tend to talk about here is probably like yours. There are some studies that point out that 50 % or more suffer with pain. Painless RLS or not, it's all torture just the same.
I'm sorry you had to find us, but glad your here now. We have some wonderful people around here. We educate, share, learn, support one another. Welcome to the board.