Call and make that appt. If your doctor is a good one he will understand your desire to find the best treatment possible. This is one reason I think it is important to have copies of all labs and tests in a personal file. So you may interview prospective doctors and provide them with copies of pertinent information which will help them in reviewing the options in your treatment.
Now how about trying this for us, instead of cutting, you have a pocket of small pepples, put these in your shoes when you feel the need for a distraction... please give this a try!
*************Positive Thoughts and Energy**********
Hazey in KS
My secret that I've never told anyone.
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ViewsAskew
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I would absolutely interview the guy in your town! Great idea. First of all, the other guy doesn't even have to know, and secondly? It's you life! You get to decide who and how you get treated. If that doctor's nurse had that attitude, it might not bode well for you.
I am probably in the minority here. . .but here goes. While many people do get relief with opioids, and that many opioids do work, it's my opinion that for day and night RLS the docs should only use longer acting and "strong" ones. The milder the opioid, the less likely it is to help in the first place, so you end up taking a lot. The docs are terrified of using the stronger ones because of the DEA, war on drugs, etc. But the research shows people with RLS are much less likely, if at all, to get addicted to them than the people who use them for pain.
So? One of my questions to the new doc would be to find out how he feels about it. I interviewed one - an RLS specialist who speaks about it and write articles - and he said he never would write a script for any of the strong ones like Methadone. I didn't go back. I don't want those drugs, but I want to know that if I need them (and I eventually did) that I can get them.
I'm rambling and on my soap box. (steps down)
I'm glad to hear that someone it closer. I hope he has an appointment more quickly.
I am probably in the minority here. . .but here goes. While many people do get relief with opioids, and that many opioids do work, it's my opinion that for day and night RLS the docs should only use longer acting and "strong" ones. The milder the opioid, the less likely it is to help in the first place, so you end up taking a lot. The docs are terrified of using the stronger ones because of the DEA, war on drugs, etc. But the research shows people with RLS are much less likely, if at all, to get addicted to them than the people who use them for pain.
So? One of my questions to the new doc would be to find out how he feels about it. I interviewed one - an RLS specialist who speaks about it and write articles - and he said he never would write a script for any of the strong ones like Methadone. I didn't go back. I don't want those drugs, but I want to know that if I need them (and I eventually did) that I can get them.
I'm rambling and on my soap box. (steps down)
I'm glad to hear that someone it closer. I hope he has an appointment more quickly.
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.
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.
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Rubyslipper
- Posts: 992
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- Location: Missouri
Ray you call him ASAP. You don't worry about what the other doctor says, you don't worry about what he thinks, you don't pass go, you don't collect $200...you call and explain EVERYTHING to this new doctor in your town and plead, beg, cry whatever it takes to get in NOW.
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)
ray
ditto on what ruby said, who cares what your current dr thinks, always get a 2nd opinion especially if you don't like the first one. Apparently he or his nurse doesn't care too much about you. you go to this new doc and see what he is about and if he understands and is willing to help...use him and drop the other bum!
dee
dee
I feel like a science project!!!
“The syndrome is so common that it should be known to every physician.”
Dr Karl Ekbom, 1945
“The syndrome is so common that it should be known to every physician.”
Dr Karl Ekbom, 1945
WooHoo! I have an appt with the new Dr on Friday morning. Thanks to your suggestions I have decided to tell him everything..which without your input I really dont think I would have EVER done. I've decided NOT to feel guilty or embarrased and just see what happens, As someone said earlier I DESERVE to get the right help. I'll let you know how it goes after.
I've been reading the RLS Rebel survival guide (which came yesterday) and have found a few things that seem to be helping. And the other good news is that its been almost 2 days with no cuts! which for me is a milestone considering the way my RLS has been lately.
I can't thank you all enough for helping me and pointing me in the RIGHT directions. The Rebel survival guide has been a godsend. Whenever I get the urge I just start reading.
I wish there was a way to let each and every one of you know how much you have helped me and to do something nice for each and every one of you. I am truly humbled.
Thank you Thank you Thank you Thank you!
Ray
I've been reading the RLS Rebel survival guide (which came yesterday) and have found a few things that seem to be helping. And the other good news is that its been almost 2 days with no cuts! which for me is a milestone considering the way my RLS has been lately.
I can't thank you all enough for helping me and pointing me in the RIGHT directions. The Rebel survival guide has been a godsend. Whenever I get the urge I just start reading.
I wish there was a way to let each and every one of you know how much you have helped me and to do something nice for each and every one of you. I am truly humbled.
Thank you Thank you Thank you Thank you!
Ray
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ViewsAskew
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I can't speak for anyone else, but it is I who is humbled. It is truly a wonderful place where strangers can become intimate friends and help each other selflessly as we cope with this hellish disorder. And, to think, a few words here and there from a few people - what power they can have.
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.
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.
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Rubyslipper
- Posts: 992
- Joined: Wed Mar 24, 2004 2:53 am
- Location: Missouri
Dear Ray,
Can so relate, I was a desperate woman when I found this discussion group. Everyone is so helpful and it was truly a godsend for me to have others help me focus - it was not always easy, yet with their support and guidance Quality of Life truly has improved for me.
Am so glad that you have the appt on friday. RLS rebel recently published a book, which I suppose you all ready have found out from her website. Remember we are all rowing for you as Becat would say... as are Ruby, Ann, Tazzer, and the rest Keep us posted.
Hazel
Can so relate, I was a desperate woman when I found this discussion group. Everyone is so helpful and it was truly a godsend for me to have others help me focus - it was not always easy, yet with their support and guidance Quality of Life truly has improved for me.
Am so glad that you have the appt on friday. RLS rebel recently published a book, which I suppose you all ready have found out from her website. Remember we are all rowing for you as Becat would say... as are Ruby, Ann, Tazzer, and the rest Keep us posted.
Hazel
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation.
Music can be made anywhere, is invisible and does not smell. --W H Auden
Music can be made anywhere, is invisible and does not smell. --W H Auden
Ray,
Please check in and let us know how things went.
Had my follow up appt with the GP who manages my RLS treatment (8 months now), I left his office feeling so frustrated - I should have just let the anger come on up... He had a medical student shadowing him, and in the discussions I realize that he is basically clueless unless I remind him ie to check my iron levels as I am on iron therapy (comment iron affects RLS?) deep breath... and that was one of the minor misnomers...
If you can't use your brain, use a blackberry! seems to be my new motto!
Hope your experience was a good one. Looking forward to hearing from you!
Hazel
Please check in and let us know how things went.
Had my follow up appt with the GP who manages my RLS treatment (8 months now), I left his office feeling so frustrated - I should have just let the anger come on up... He had a medical student shadowing him, and in the discussions I realize that he is basically clueless unless I remind him ie to check my iron levels as I am on iron therapy (comment iron affects RLS?) deep breath... and that was one of the minor misnomers...
If you can't use your brain, use a blackberry! seems to be my new motto!
Hope your experience was a good one. Looking forward to hearing from you!
Hazel
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation.
Music can be made anywhere, is invisible and does not smell. --W H Auden
Music can be made anywhere, is invisible and does not smell. --W H Auden
Not really RLS related story, but topical
It is apparently human survival instinct to attempt to purposely inflict other sensation that help detract from that pain over which we have no control.
My friend's son, who was 2 year old when this started, sufferes from severe migraines. She found out about this was when she found this little child in the basement pounding his head for all he was worth against the cinderblock wall. She was told by the neurologist that in some way, the self inflicted pain helped to ease the pain of the migraine, which a 2 year old didn't understand at all. And anyone here who suffers from migraines knows that the pain can put you into a near catatonic state at times.
So, the need to seek distraction, no matter how severe it may seem is only primal instinct. Realizing that that distraction isn't solving the problem is consciousness. Reaching out for help from others who care is humanity.
You have placed yourself in the hands of several who can offer to you understaning, sympathy, advice and support. I wish you luck in taking charge of your RLS and showing it who's boss!
My friend's son, who was 2 year old when this started, sufferes from severe migraines. She found out about this was when she found this little child in the basement pounding his head for all he was worth against the cinderblock wall. She was told by the neurologist that in some way, the self inflicted pain helped to ease the pain of the migraine, which a 2 year old didn't understand at all. And anyone here who suffers from migraines knows that the pain can put you into a near catatonic state at times.
So, the need to seek distraction, no matter how severe it may seem is only primal instinct. Realizing that that distraction isn't solving the problem is consciousness. Reaching out for help from others who care is humanity.
You have placed yourself in the hands of several who can offer to you understaning, sympathy, advice and support. I wish you luck in taking charge of your RLS and showing it who's boss!
Hi All...Well....I went to the new Dr. Today and I was totally prepared. I had written a paper documenting everything I've ever taken, how I feel, the cuttings on my feet, my goals...everything. I took books with me and also the Mayo clinic papers dealing with RLS. I was READY!
The Dr. read my paper before he came in and then told me that he really knew nothing about RLS! He had been to some medical conference once and stopped and signed up at a booth, he signes up at lots of booths. He had NO idea he was listed on this site lol. He told me maybe I should take some iron. So here I was feeling like an idiot because I just basically told this man all of my past including the cutting part and it was all for not. Kinda funny now that I look back on it though, he had the DUMBEST look on his face
I still have my other appointment this Thursday and I will be OK till then. I'm learning thru Jills book to go on the offensive right away when the symptoms start and not sit there feeling sorry for myself. On a positve note I was so frustrated after seeing the Dr. I went on a 3 hour walk! Kinda like Gilligan but without the tour and the stranded on a desert island thing lol. I am goin kick this thing right in the behind when it starts up soon. It's 5:00 am and I'm due....
Thanks as always,
Ray
The Dr. read my paper before he came in and then told me that he really knew nothing about RLS! He had been to some medical conference once and stopped and signed up at a booth, he signes up at lots of booths. He had NO idea he was listed on this site lol. He told me maybe I should take some iron. So here I was feeling like an idiot because I just basically told this man all of my past including the cutting part and it was all for not. Kinda funny now that I look back on it though, he had the DUMBEST look on his face
I still have my other appointment this Thursday and I will be OK till then. I'm learning thru Jills book to go on the offensive right away when the symptoms start and not sit there feeling sorry for myself. On a positve note I was so frustrated after seeing the Dr. I went on a 3 hour walk! Kinda like Gilligan but without the tour and the stranded on a desert island thing lol. I am goin kick this thing right in the behind when it starts up soon. It's 5:00 am and I'm due....
Thanks as always,
Ray
You're on your way...
Ray,
IMHO, the fact that your last post is about a doctor visit that really didn't work out particulary great, was peppered with humor and sarcasm shows that you are armed and more than prepared for battle!
Take no prisoners!
shirley
IMHO, the fact that your last post is about a doctor visit that really didn't work out particulary great, was peppered with humor and sarcasm shows that you are armed and more than prepared for battle!
Take no prisoners!
shirley
Hi Ray and do my eyes deceive me? RUNSINBED, Shirley is here. Well what a great way to start my day.
Runs it's been awhile and I hope thay all is well and strong with you. Your right about counter pain and we have spoken aloud about here many times. Amazing how far humans will go for comfort.
Yes, one of those headaches will produce the overwhelming urge to hurt another part of your body so that the head is saved a few moments pain. I can't tell you the times I've hit my head against a wall, pullled my hair, you name it , I"ve tried many things. Thank God for miagrane medications, still looking for the doc that developed tha tone. Kiss and hug do to him or her.
Thank you Shirley for reminding me where I once stood and how far I've come.
Ray I couldn't be more proud of you. I'm sure you were ready for what ever was to come, and it was all normal, at least for many of us, we have gotten that deer in the headlights look from our docs. LOL and yet's it's not funny at all. But your the man, you called, you went and you tried.
I'm so glad that Jill's book is helping you, as it has so many others. I think I was as excited as she was it finally was coming out. She will be at the National meeting and will give a presentation that is awesome.
I'm, with Shirley, take not one prisoner, gettem" and gettem" good babe.
Guess what we will still be here for you.
Hugs love and always the moon
Lynne
Runs it's been awhile and I hope thay all is well and strong with you. Your right about counter pain and we have spoken aloud about here many times. Amazing how far humans will go for comfort.
Yes, one of those headaches will produce the overwhelming urge to hurt another part of your body so that the head is saved a few moments pain. I can't tell you the times I've hit my head against a wall, pullled my hair, you name it , I"ve tried many things. Thank God for miagrane medications, still looking for the doc that developed tha tone. Kiss and hug do to him or her.
Thank you Shirley for reminding me where I once stood and how far I've come.
Ray I couldn't be more proud of you. I'm sure you were ready for what ever was to come, and it was all normal, at least for many of us, we have gotten that
deer in the headlights look from our docs. LOL and yet's it's not funny at all. But your the man, you called, you went and you tried.
I'm so glad that Jill's book is helping you, as it has so many others. I think I was as excited as she was it finally was coming out. She will be at the National meeting and will give a presentation that is awesome.
I'm, with Shirley, take not one prisoner, gettem" and gettem" good babe.
Guess what we will still be here for you.
Hugs love and always the moon
Lynne
Finding the right doctor
Ray, you wrote that despite the fact you went to your appointment 110% prepared (well done, You), your doctor was completely clueless after your presentation (complete with visual aids and handouts ). Unfortunately, RLS is yet another one of those things that is, at this point, completely unkown/completely pooh-poohed by many in the medical community. Never fear, though, there are professionals out there have heard/want to know more/care about your RLS. Just don't give in before finding that doctor.
While I'm not going to go back to Vicotorian times, there are more than a few very real pathophysiologies that were considered to be completely psychosomatic for a very long time. Chronic Fatigue Syndrome ARRGGHH--my cousin had this by the time she was 16. It was horrible, she was miserable. She was taken from doctor to doctor--was told to exercise, was told to eat better, was told that she had a bad attitude and was being a rebellious teen. Blah, blah, blah. Finally, a doctor who was interested in it took her seriously, ran the proper tests to find the Epstein Barr virus and helped her. PMS: Women--I know I don't need to go into this. Men who live with women--I know I don't need to go into this. Now there are many choices and research available to help the "afflicted" deal with this, including SSRI andtidepressants to be taken for two weeks out of the month. Although, I've read that there was a nifty little treatment available in the late 19th century that sounds like it might have been kind of fun!
Migraines: I can't tell you how many doctors I went to who told me to take Tylenol when I feel it coming on. I was actually in a doctor's office (this was as late as 1994) while I had a migraine--I was throwing up, one pupil was all but completely gone and I don't even know what else. He told me to go home, take Advil and rest (I have a few choice words for that guy, but I'll refrain. 
). Finally, I went to a doctor who was completely EXCITED to be treating me. He told me that he had gotten his first migraine a week before and even though he was in hell, he was thrilled to be there so that he could understand what his patients were going through. This was a MAJOR DUDE, people! I'm sure there are many, many more of the so called "hysterical" or "psycho-somatic" disorders that have since been proven to be true physical issues that required medical and pharmaceutical intervention.
Don't lose faith--in between appointments, continue to work on your presentation--and eventually, you will find an enlightened physician who will help you. I finally did; at first he didn't know a name for it, but he knew the condition and started working with me.
). Unfortunately, RLS is yet another one of those things that is, at this point, completely unkown/completely pooh-poohed by many in the medical community. Never fear, though, there are professionals out there have heard/want to know more/care about your RLS. Just don't give in before finding that doctor.
While I'm not going to go back to Vicotorian times, there are more than a few very real pathophysiologies that were considered to be completely psychosomatic for a very long time. Chronic Fatigue Syndrome ARRGGHH--my cousin had this by the time she was 16. It was horrible, she was miserable. She was taken from doctor to doctor--was told to exercise, was told to eat better, was told that she had a bad attitude and was being a rebellious teen. Blah, blah, blah. Finally, a doctor who was interested in it took her seriously, ran the proper tests to find the Epstein Barr virus and helped her. PMS: Women--I know I don't need to go into this. Men who live with women--I know I don't need to go into this. Now there are many choices and research available to help the "afflicted" deal with this, including SSRI andtidepressants to be taken for two weeks out of the month. Although, I've read that there was a nifty little treatment available in the late 19th century that sounds like it might have been kind of fun!
Migraines: I can't tell you how many doctors I went to who told me to take Tylenol when I feel it coming on. I was actually in a doctor's office (this was as late as 1994) while I had a migraine--I was throwing up, one pupil was all but completely gone and I don't even know what else. He told me to go home, take Advil and rest (I have a few choice words for that guy, but I'll refrain. ). Finally, I went to a doctor who was completely EXCITED to be treating me. He told me that he had gotten his first migraine a week before and even though he was in hell, he was thrilled to be there so that he could understand what his patients were going through. This was a MAJOR DUDE, people! I'm sure there are many, many more of the so called "hysterical" or "psycho-somatic" disorders that have since been proven to be true physical issues that required medical and pharmaceutical intervention.
Don't lose faith--in between appointments, continue to work on your presentation--and eventually, you will find an enlightened physician who will help you. I finally did; at first he didn't know a name for it, but he knew the condition and started working with me.