Hi Everyone,
I'm new to this board and have a question. I have all the symptoms but still don't know if I have RLS. Every description I've read pertains to sensations in the calves or limbs. Mine is strictly in my knees. Sometimes the right, sometimes the left and sometimes both. I feel like I just want to cut off both my legs at times. Especially at 3:30 AM and I'm still wide awake and jiggling my legs all over the bed. If anyone has these same symptoms please advise. Thank You All!
Another RLS sufferer
Knee only?
About a year ago mine started in the right knee. I thought it was from twisting it. I even had an MRI which found no serious injury that could be related to the pain.
Then the pain occasionally shifted to the left knee. Movement eased the pain. The pain usually occurred when the leg was immobile either in bed or when driving on long trips. Then the strange sensations (paresthesias) started especially when I stopped taking pain medication or tranquilizers. They came on strong when I stopped taking blood pressure medications.
The paresthesias then no longer were confined to the knee. The way I understand it, you do not need to have pain to have RLS but sooner or later you should have the uncomfortable feeling usually in the lower extermities.
Time will tell. Keep us informed.
Then the pain occasionally shifted to the left knee. Movement eased the pain. The pain usually occurred when the leg was immobile either in bed or when driving on long trips. Then the strange sensations (paresthesias) started especially when I stopped taking pain medication or tranquilizers. They came on strong when I stopped taking blood pressure medications.
The paresthesias then no longer were confined to the knee. The way I understand it, you do not need to have pain to have RLS but sooner or later you should have the uncomfortable feeling usually in the lower extermities.
Time will tell. Keep us informed.
Jumpy Owl
Knees only
Hi Jumpy,
Thanks for your reply. From reading some posts on this board, I guess I can make a connection as to when this started.
I have been taking Xanax for many years and live on Tylenol and Aleve. I just switched from Zoloft to Welbutrin about 2 months ago. I now see that these medications are probably contributing to my RLS symptoms, since I've been bothered with this for many years also. As I stated before it is only in my knees. I didn't mention that there is no pain though, only creepy, restless sensations. I feel terrible for these people that talk about how unbearable the pain is.
I was at an antique show this past weekend in PA. The days warmed up and my feet swelled. By the time I got back to Jersey, I saw that my right knee was severely swollen and very painful. This lasted until Wednesday, so I got my first taste of restless legs and pain. all I can say is God bless these people in pain every night.
I am going to look into iron supplements since I am anemic, and magnesium. The quinine suggestion sounds the best, since it is immediate relief. If there is anything else you guys can suggest, I would greatly appreciate it. Thanks again and good luck!
Thanks for your reply. From reading some posts on this board, I guess I can make a connection as to when this started.
I have been taking Xanax for many years and live on Tylenol and Aleve. I just switched from Zoloft to Welbutrin about 2 months ago. I now see that these medications are probably contributing to my RLS symptoms, since I've been bothered with this for many years also. As I stated before it is only in my knees. I didn't mention that there is no pain though, only creepy, restless sensations. I feel terrible for these people that talk about how unbearable the pain is.
I was at an antique show this past weekend in PA. The days warmed up and my feet swelled. By the time I got back to Jersey, I saw that my right knee was severely swollen and very painful. This lasted until Wednesday, so I got my first taste of restless legs and pain. all I can say is God bless these people in pain every night.
I am going to look into iron supplements since I am anemic, and magnesium. The quinine suggestion sounds the best, since it is immediate relief. If there is anything else you guys can suggest, I would greatly appreciate it. Thanks again and good luck!
Swelling/pain
Hullo, denisefs:
You are right, most of the antidepressants worsen the symptoms of RLS.
You were smart to switch to Wellbutrin as that is one of a few which do not aggravate RLS! 
The RLS pain is different because it is brought on by immobility, it is increases in intensity while motionless, and is immediately lessened or relieved by moving the leg or joint.
You mentioned that your knee was swollen and thus painful. Now this sounds like a circulatory problem to me. So it may be an additional problem to your RLS. Do you have varicose veins? Have you tried support hose?
Not long ago I talked to an ICU nurse and she was convinced that RLS is due to circulatory problems. This is certainly not true in general, but I guess it can be in certain cases as some women suffer from it during pregnancy.
I heard people state that the relentless creep crawly feelings (paresthesia) are worse than pain. Having both I agree.
As Ruby says keep us informed of your journey.
You are right, most of the antidepressants worsen the symptoms of RLS.
You were smart to switch to Wellbutrin as that is one of a few which do not aggravate RLS!
The RLS pain is different because it is brought on by immobility, it is increases in intensity while motionless, and is immediately lessened or relieved by moving the leg or joint.
You mentioned that your knee was swollen and thus painful. Now this sounds like a circulatory problem to me. So it may be an additional problem to your RLS. Do you have varicose veins? Have you tried support hose?
Not long ago I talked to an ICU nurse and she was convinced that RLS is due to circulatory problems. This is certainly not true in general, but I guess it can be in certain cases as some women suffer from it during pregnancy.
I heard people state that the relentless creep crawly feelings (paresthesia) are worse than pain. Having both I agree.
As Ruby says keep us informed of your journey.
Jumpy Owl
-
me again
creeping knee sensations
Hi again,
Thanks again for your reply. I figure if I keep this up, I might get to the bottom of my problems.
First off, I don't have varicose veins and I never tried wearing pantyhose 24/7. I also feel I have a circulatory problem, since lately I am experiencing numbness in my hands upon waking.
You mentioned that Wellbutrin doesn't seem to aggravate RLS, but I think my legs have gotten worse since the switch
. Could this be possible? I stopped the Zoloft because of excessive weight gain. I also am curious to know if weight is an issue? Are most sufferers overweight?
Thanks,
D.
Thanks again for your reply. I figure if I keep this up, I might get to the bottom of my problems.
First off, I don't have varicose veins and I never tried wearing pantyhose 24/7. I also feel I have a circulatory problem, since lately I am experiencing numbness in my hands upon waking.
You mentioned that Wellbutrin doesn't seem to aggravate RLS, but I think my legs have gotten worse since the switch
. Could this be possible? I stopped the Zoloft because of excessive weight gain. I also am curious to know if weight is an issue? Are most sufferers overweight?
Thanks,
D.
Re: RLS
me again wrote:Tried to post reply under denisefs but computer said, this user name has already been taken, yeah by me. I posted under me again. Hope this doesn't confuse anyone. And did I do something wrong?
Hiya
No you didn't do anything wrong.
To submit posts under your "name" denisfs, you need to log in. You have registered as a member of this discussion group and given yourself a username and password.
At the top of the screen, under "rls.org" you will see a few options, one of which is "log in". Click on that, enter in your username i.e. denisefs, and your password and you should be back on track!
Nadia
Nadia
My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!
My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!
looking for some help
Hi! I have had RLS since childhood and was actually diagnosed two years ago. My neurologist had me take Mirapex to start. This seemed to help initially, but I needed to take more and more to have the same relief. I now see another doctor who has me taking Requip. Both of these are dopamine replacements. Although they offer me some relief, I now have symptoms all day long. I was wondering if any of you fellow sufferers have had any luck with either traditional medications or any other "treatments". I have had it with this syndrome. Thank you!
There are other type of medications
Yes, Susy, there are other medications which work sometimes just as well or even better in some individuals.
Benzodiazapines and other similar drugs have been used successfully. One has to choose the proper drug so it does not have a long half life extending into the following day.
Opioids seem to work on the same dopamine receptors, the simplest and the cheapest is hydrocodone and it works fairly well sometimes in combination with another drug.
Anticonvulsants especially neurontin seem to be the rage nowadays especially if the RLS symptoms are accompanied by pain.
Why do you want to discontinue your dopamine agonists if they work? the usual reason is augmentation (I guess that is what you mean by all day long, are the symptoms also more intense?) or rebound effects.
Anyway there are several drugs in each group to try. Good luck!
Benzodiazapines and other similar drugs have been used successfully. One has to choose the proper drug so it does not have a long half life extending into the following day.
Opioids seem to work on the same dopamine receptors, the simplest and the cheapest is hydrocodone and it works fairly well sometimes in combination with another drug.
Anticonvulsants especially neurontin seem to be the rage nowadays especially if the RLS symptoms are accompanied by pain.
Why do you want to discontinue your dopamine agonists if they work? the usual reason is augmentation (I guess that is what you mean by all day long, are the symptoms also more intense?) or rebound effects.
Anyway there are several drugs in each group to try. Good luck!
Jumpy Owl