Hi Emily,
I just got back from the hospital...my wife had surgery this morning. I said before that I can't know how you're feeling, since my RLS hasn't yet become 24/7. But after spending a day in the hospital beside my wife, I do know how frustrating it is to be close to someone that's in pain, and not be able to take that pain away. Having read the posts on this thread, I get the feeling that most of us here share in that frustrated feeling of not being able to help you with your pain. The only thing we can do, as so many here have mentioned, is to be here for you, and to reassure you that we "get it" when you describe your despondency and your hesitation to even approach another professional to try and figure out what's causing your RLS, and to treat it effectively. Since I'm kind of new here, I wasn't aware that your symptoms fired up less than a year ago. I have to agree with some others here who say that your RLS is secondary to something else. Can you think of anything that's happened within the past 24 months that's out of the ordinary...any kind of accident, or back "spasm"...or any other things that might have put your body under unusual stress? Have you gone through any severe emotional stuff in the past 18months? How about a change in jobs, moving, dietary changes...heck, anything out of the ordinary for you? I'm just throwing this stuff out to encourage you to think about things that you might have previously dismissed as "unimportant" , when in reality these things might have changed a previously "dormant" , genetically predisposed RLS into the very active disease which is now tormenting you
so severely. Well, Em, I've got to try to get some sleep so I can go back to the hospital tomorrow morning. I'm praying for you in a very optimistic way...no sense in being timid about praying for anything that we need help with. If we're looking for miracles to happen, we have to believe that they'll happen...and I believe that your present pain will become history...just wait and see! ---Andy
Anticonvulsants?
Poor, dear girl. I can hear the anguish in your posts. I wish there was something I could do to help. But, know that I care very much for you and will hold you close in spirit. Have you seen anyone who can help with the psychological aspect of this struggle? RLS can wear on you so much that you end up feeling hopeless and desperate. Having someone to listen and offer suggestions for coping might could help. And, of course, you have your family here. What can we do to support you?
At times our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us. Albert Schweitzer
anyone get worse from anticonvulsant
Oh Emily I wish I also could take the pain away. I say prayers everynight that the pain does subside and you can get some good help from a dr. The post that Brandy and Andy did was very good. We will give you as much support as you need and will be there for you. We are one big family and love you very much.
Charlene
Taking one day at a time
Taking one day at a time
Em
Thank you so much for keeping us posted. I am SO glad that you had all those blood tests and that you are getting the MRIs and the nerve conduction test. You have a great husband! My husband had to get MAD, too, to finally get us on the right track.
BTW, my neuro surgeon told me that, in my particular case, if the MRI of my thoracic spine was negative, he would do one on my brain, because it could be something vascular. Of course, my symptoms were not like what you are having---
I'm also very glad that the Mayo Clinic was mentioned.
Em, we are always here for you even when you don't feel like posting. You are in our thoughts and prayers. You have so many people who care about you. And, BTW, sometimes it just takes too much effort to post when you are carrying all those other things around with you. Just take care of yourself and know that we are all pulling for you!!!!
Love
Jan
Thank you so much for keeping us posted. I am SO glad that you had all those blood tests and that you are getting the MRIs and the nerve conduction test. You have a great husband! My husband had to get MAD, too, to finally get us on the right track.
BTW, my neuro surgeon told me that, in my particular case, if the MRI of my thoracic spine was negative, he would do one on my brain, because it could be something vascular. Of course, my symptoms were not like what you are having---
I'm also very glad that the Mayo Clinic was mentioned.
Em, we are always here for you even when you don't feel like posting. You are in our thoughts and prayers. You have so many people who care about you. And, BTW, sometimes it just takes too much effort to post when you are carrying all those other things around with you. Just take care of yourself and know that we are all pulling for you!!!!
Love
Jan
No one is alone who had friends.
anyone get worse from anticonvulsants
Hi Em, I am also so glad that you are able to get those tests and so happy that your husband went with you. We are with you all of the way and know at times you do not feel like posting and that is fine. When you do, let us know what the drs are saying about the results. I am sure that I have said this a thousand and one times, but you are in my daily prayers and will continue until you are on the road to a wonderful recovery and have back your quality of life which you more than deserve.
I am glad that they brought up going to the Mayo Clinic if all else comes back okay. Remember, we will be with you all of the way.
I am glad that they brought up going to the Mayo Clinic if all else comes back okay. Remember, we will be with you all of the way.
Charlene
Taking one day at a time
Taking one day at a time
Hi again Emily,
I'm so happy that your PCP is ordering more tests and imaging. I took an anatomy & physiology course not too many years ago, and the one underlying theme that was woven through nearly every chapter was something called homeostasis...the condition in which the various processes and anatomical parts of our bodies are in balance, and how the body is so wonderfully designed to maintain that balance. When something is wrong in one part of the body, other areas are affected also. So, having an EMG done in your legs could very well identify a neurological problem which is manifesting itself in your face, or elsewhere. I've had about 3 or 4 EMG's done and there's some deterioriation of the sheaths within which my nerves transmit their impulses. The amplitude and pattern of the electrical impulses traveling through the pathways in my legs is abnormal, and if it gets progressively worse, they'll probably start doing some more tests to determine why the deterioration is occurring...and so I've been diagnosed with peripheral neuropathy, as well as RLS and PLMS. Do you remember in one of the stickeys (or maybe somewhere else...my mind isn't working up to its normal 50%) that discusses secondary RLS, and how RLS can be associated with neuropathies and many other conditions and/or medications? If some neurologist wanted to do imaging of any part of my body to try and determine the cause for my RLS and increasing pain in my leg, then I'd give him the green light to do it. Your symptoms are extremely unusual in that they don't respond to traditional therapies, and they occur in your face, which also isn't a common place for symptoms to manifest themselves. So, maybe the answer to your pain will also be found in an unusual place or as the result of something being out of whack in another part of your body. I wouldn't discount any testing as being irrelevant. Em, I'm still praying for your relief from this, and many of us here are doing the same. I don't know how spiritual you are, but I have a friend who recently told me that our prayers are received by God with true joy...that He, the creator of the universe, is honored by our coming to Him in prayer as if we were giving Him a gift. I don't know about you, but that makes me feel really special, and I hope that you also consider yourself as a special person in His eyes as well as in ours. Em, I've gotta go now, so please stay in touch. ---Andy
I'm so happy that your PCP is ordering more tests and imaging. I took an anatomy & physiology course not too many years ago, and the one underlying theme that was woven through nearly every chapter was something called homeostasis...the condition in which the various processes and anatomical parts of our bodies are in balance, and how the body is so wonderfully designed to maintain that balance. When something is wrong in one part of the body, other areas are affected also. So, having an EMG done in your legs could very well identify a neurological problem which is manifesting itself in your face, or elsewhere. I've had about 3 or 4 EMG's done and there's some deterioriation of the sheaths within which my nerves transmit their impulses. The amplitude and pattern of the electrical impulses traveling through the pathways in my legs is abnormal, and if it gets progressively worse, they'll probably start doing some more tests to determine why the deterioration is occurring...and so I've been diagnosed with peripheral neuropathy, as well as RLS and PLMS. Do you remember in one of the stickeys (or maybe somewhere else...my mind isn't working up to its normal 50%) that discusses secondary RLS, and how RLS can be associated with neuropathies and many other conditions and/or medications? If some neurologist wanted to do imaging of any part of my body to try and determine the cause for my RLS and increasing pain in my leg, then I'd give him the green light to do it. Your symptoms are extremely unusual in that they don't respond to traditional therapies, and they occur in your face, which also isn't a common place for symptoms to manifest themselves. So, maybe the answer to your pain will also be found in an unusual place or as the result of something being out of whack in another part of your body. I wouldn't discount any testing as being irrelevant. Em, I'm still praying for your relief from this, and many of us here are doing the same. I don't know how spiritual you are, but I have a friend who recently told me that our prayers are received by God with true joy...that He, the creator of the universe, is honored by our coming to Him in prayer as if we were giving Him a gift. I don't know about you, but that makes me feel really special, and I hope that you also consider yourself as a special person in His eyes as well as in ours. Em, I've gotta go now, so please stay in touch. ---Andy
anyone get worse from anticonvulsants
Andy, what a wonderful post. Thank you for sharing that with us.
Em, I really hope all is going well with you and my prayers are still with you and will always be there for.
Em, I really hope all is going well with you and my prayers are still with you and will always be there for.
Charlene
Taking one day at a time
Taking one day at a time
anything get worse from anticonvulsants
Hi Em. I do not even have the slightest idea what you are going through but only wish that I could take the pain away.
My only thought is do you have a Mayo Clinic in your area as I know they are very thorough in everything they do. This is just a thought and wanted to mention this to you. I am sure that you have gone to different drs and that is so sad that this one cannot call you back.
I know you will keep us posted and still saying prayers. Will not give up on that.
Please listen to Jan as she says to please hang on and know that we are with you all of the way.
My only thought is do you have a Mayo Clinic in your area as I know they are very thorough in everything they do. This is just a thought and wanted to mention this to you. I am sure that you have gone to different drs and that is so sad that this one cannot call you back.
I know you will keep us posted and still saying prayers. Will not give up on that.
Please listen to Jan as she says to please hang on and know that we are with you all of the way.
Charlene
Taking one day at a time
Taking one day at a time