I appreciate the wealth of assistance I have received on this fine forum.
My dilemma follows. Please bear with me. It is not a short story.
I'm a North American currently living in the Philippines. I'm being treated for RLS and another puzzling neurological condition that has yet to be identified. Requip is not available in the Philippines, so I am taking 1800mg of Neurontin daily, as well as 2mg of clonazapam. Appears the combination is 90% effective.
Now, for the hard part. My other condition consists of a constant burning and intense tingling sensation on the bottom of my feet. The burning and tingling appear in no other location on my body. It is NOT a "minor" nuisance. It causes intense suffering, especially at night.
My neurologist in the Philippines is young, and I believe I am his first RLS patient. He has an excellent bedside manner, and is interested in my well being. He ordered a "nerve test" at a local hospital. Results were insignificant. So, he prescribed a tricyclic antidepressent medication known as Surmontil for the pain in my feet.
IMPORTANT: Surmontil, as well as most other tricyclic antidepressents, appear on the WARNING page of the SoCal RLS site as having been known to INCREASE RLS symptoms. Hence, I have not filled the prescription, and since I want to maintain excellent relations with my neurologist, I did not have the testicular fortitude to explain to him that I thought Surmontil was a bad choice to treat my feet pain.
QUESTIONS FOR THE EXPERTS: How do I break the news to this young doctor that Surmontil is ill-advised for a patient with severe, primary RLS? Also, has anyone else experienced this strange feeling on the bottom of their feet?
You are encouraged to contact me directly at: hhs71-first@usa.net
In advance, thank you for your assistance!
Worldtraveler
Questions for the Experts and Well-Informed Members
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worldtraveler
- Posts: 1
- Joined: Thu Nov 10, 2005 11:23 am
- Location: Philippines
hmm, i would say your best bet would be to be completely and humbly honest with your doctor! (she sounds like she is very understanding and willing to learn anyway and probably wont mind)
as long as you remain transparent and open about your condition and concerns i think that rarely (but not always) fails. it can also help to forge a good relationship with her..
anyway my opinion...
i have no idea about this foot sensation you have, sorry!
best regards and keep in touch.
as long as you remain transparent and open about your condition and concerns i think that rarely (but not always) fails. it can also help to forge a good relationship with her..
anyway my opinion...
i have no idea about this foot sensation you have, sorry!
best regards and keep in touch.
Last edited by trevb on Thu Nov 10, 2005 3:51 pm, edited 2 times in total.
Hi Worldtraveller
I was beginning to think it was just me "bucking" the trend again until you mentioned it. The feet that is.
Right at this very minute they feel like they're literally burning ... and it is quite uncomfortable. The only relief I can get whilst i'm attempting to fall asleep is to try numerous foot creams. So far i've found that the ones from "The Body Shop" have been the most effective in "cooling" my feet down.
I too am with Trev on being honest with your doctor. The more he/she knows, the more open they will be to helping you.
I am also on a low-dosage tri-cyclic anti-depressant (yes, I have severe RLS), but it has had no adverse affect on my RLS ... and this is after many months of "experimentation".
Hope this has helped you out.
Take care of you and let us know how you go!
Regards
I was beginning to think it was just me "bucking" the trend again until you mentioned it. The feet that is.
Right at this very minute they feel like they're literally burning ... and it is quite uncomfortable. The only relief I can get whilst i'm attempting to fall asleep is to try numerous foot creams. So far i've found that the ones from "The Body Shop" have been the most effective in "cooling" my feet down.
I too am with Trev on being honest with your doctor. The more he/she knows, the more open they will be to helping you.
I am also on a low-dosage tri-cyclic anti-depressant (yes, I have severe RLS), but it has had no adverse affect on my RLS ... and this is after many months of "experimentation".
Hope this has helped you out.
Take care of you and let us know how you go!
Regards
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!!!
just been looking into surmontil and there isnt much but yes youre right it does say here...
http://www.rlshelp.org/rlsrx.htm#Antidepressant
...that the drug may worsen rls more than helping.
you could to check you are getting the right up to date info on this drug you could email our rls expert dr. B, who may be able to give you expert advice..@ www.rlshelp.org.
http://www.rlshelp.org/rlsrx.htm#Antidepressant
...that the drug may worsen rls more than helping.
you could to check you are getting the right up to date info on this drug you could email our rls expert dr. B, who may be able to give you expert advice..@ www.rlshelp.org.
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Penguinrocks
- Posts: 703
- Joined: Thu Mar 17, 2005 6:03 pm
- Location: Massachusetts
- Contact:
World Traveler.
In my humble opinion I believe the same as Trev. You need to be honest. Seeing as you said you may be his first and only RLS patient, that means he's learning right a long with you.
When my doc wanted me to take something and i told him that this web site said "stay away from that" he just looked at me and said, "oh ok, good, then we'll find something else or some way else to do this" and he was SO nice when saying it and I believe he has a new respect for me as I'm now as well informed as I can possibly be at this stage of the game.
We are learning together. Sounds like your doc is a caring human being....don't be "afraid" to be honest and if he's as good as you say, he will be thankful and willing to work with you.
Good luck and keep us posted
Penguin
In my humble opinion I believe the same as Trev. You need to be honest. Seeing as you said you may be his first and only RLS patient, that means he's learning right a long with you.
When my doc wanted me to take something and i told him that this web site said "stay away from that" he just looked at me and said, "oh ok, good, then we'll find something else or some way else to do this" and he was SO nice when saying it and I believe he has a new respect for me as I'm now as well informed as I can possibly be at this stage of the game.
We are learning together. Sounds like your doc is a caring human being....don't be "afraid" to be honest and if he's as good as you say, he will be thankful and willing to work with you.
Good luck and keep us posted
Penguin
Beware the Penguin
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kt
I have 'burning feet' also. My neuro thinks it is part of the RLS...
It tends to come and go. I've been on Requip for almost 3 months now and have only had mild flare ups with both the burning feet and the pain in my legs.
Prior to Requip I had done the following for the burning feet: run under cold water in tub, fill a zip lock bag with ice and put my feet on top. But, I was told that 20 min should be the max that you do anything with ice as it can damage nerves.
But I KNOW EXACTLY how you feel.. It is unbearable. I also used to adjust myself in bed so that I could have my feet flat against a wall b/c it was cool.
It tends to come and go. I've been on Requip for almost 3 months now and have only had mild flare ups with both the burning feet and the pain in my legs.
Prior to Requip I had done the following for the burning feet: run under cold water in tub, fill a zip lock bag with ice and put my feet on top. But, I was told that 20 min should be the max that you do anything with ice as it can damage nerves.
But I KNOW EXACTLY how you feel.. It is unbearable. I also used to adjust myself in bed so that I could have my feet flat against a wall b/c it was cool.
Burning Feet
Good afternoon to all,
I'm Back! and will report more in general topics.
About the burning feet. I had that as well for yrs on end. In fact, it's a common symptom within my family, yes, many of us are RLSers, as well.
I'm not sure that I ever got to a point where the RLS medications worked for that part of it. I do know that, for myself, I take calicum and a good amount of Magnesium every day. It did nothing really for my severe RLS but I think the magnesium did help with the burning. I just couldn't say it would work for anyone else.
Remember that when looking at your symptoms, the docs do say "unusual sensations"! That gives us a wide range doesn't it? Don't discount that burning feet or legs could be just part of your RLS. In the absence of a doctor's testing and calling it something else, or giving it a label, it could just be part of your RLS.
The new way it's said now:
RLS is characterized by a compelling urge to move the legs and by uncomfortable or sometimes painful sensations in the legs often described as creepy-crawling, tingling, pulling, or tightening.
In my opinion, that is a huge change from what they have said in the past and I think they are starting to realize that there might far too many ways this comes out in each person.
Felt like a victory to me.
I'm Back! and will report more in general topics.
About the burning feet. I had that as well for yrs on end. In fact, it's a common symptom within my family, yes, many of us are RLSers, as well.
I'm not sure that I ever got to a point where the RLS medications worked for that part of it. I do know that, for myself, I take calicum and a good amount of Magnesium every day. It did nothing really for my severe RLS but I think the magnesium did help with the burning. I just couldn't say it would work for anyone else.
Remember that when looking at your symptoms, the docs do say "unusual sensations"! That gives us a wide range doesn't it? Don't discount that burning feet or legs could be just part of your RLS. In the absence of a doctor's testing and calling it something else, or giving it a label, it could just be part of your RLS.
The new way it's said now:
RLS is characterized by a compelling urge to move the legs and by uncomfortable or sometimes painful sensations in the legs often described as creepy-crawling, tingling, pulling, or tightening.
In my opinion, that is a huge change from what they have said in the past and I think they are starting to realize that there might far too many ways this comes out in each person.
Felt like a victory to me.
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Penguinrocks
- Posts: 703
- Joined: Thu Mar 17, 2005 6:03 pm
- Location: Massachusetts
- Contact:
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Penguinrocks
- Posts: 703
- Joined: Thu Mar 17, 2005 6:03 pm
- Location: Massachusetts
- Contact:
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Guest
Yes Godbless each and everyone of you!
Went to GP and he prescribed Mirapix (spelling errors rampant due to brain fog) friday, sunday night I could only walk in a modified shuffle as the soles of my feet were burning... so I add that to my list of symptoms! Used to be the hands and feet would go cold! Good grief.
I agree totally about being honest and upfront with the doctor, the info supplied here has helped me tremendously. The doctors in this area are not familiar with RLS, but have been responsive to information I print out and bring with me.
sleep apnea is the big thing here, regardless of what I said during the interview friday, the GP was adamant that I probably was suffering from sleep apnea... which may be a part of my problems, but I do know that I have RLS! He contends that treating the sleep apnea the RLS will go away... which left me frustrated but I kept at him that the pain and sensations I have could be treated, that we just needed to find out what would work. So he agreed to prescribe the Mirapex. At this point I am just too tired do much more than hold on to the knot at the end of the rope waiting for the Neuro appt on the 2nd.
The Mirapex makes my heart race, and I am waking up several times a night from strange dreams. It really helped the first night, yet I am experiencing more severe problems during the day.
Life is a journey... I will row along side you, Hazel
Went to GP and he prescribed Mirapix (spelling errors rampant due to brain fog) friday, sunday night I could only walk in a modified shuffle as the soles of my feet were burning... so I add that to my list of symptoms! Used to be the hands and feet would go cold! Good grief.
I agree totally about being honest and upfront with the doctor, the info supplied here has helped me tremendously. The doctors in this area are not familiar with RLS, but have been responsive to information I print out and bring with me.
sleep apnea is the big thing here, regardless of what I said during the interview friday, the GP was adamant that I probably was suffering from sleep apnea... which may be a part of my problems, but I do know that I have RLS! He contends that treating the sleep apnea the RLS will go away... which left me frustrated but I kept at him that the pain and sensations I have could be treated, that we just needed to find out what would work. So he agreed to prescribe the Mirapex. At this point I am just too tired do much more than hold on to the knot at the end of the rope waiting for the Neuro appt on the 2nd.
The Mirapex makes my heart race, and I am waking up several times a night from strange dreams. It really helped the first night, yet I am experiencing more severe problems during the day.
Life is a journey... I will row along side you, Hazel
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ViewsAskew
- Moderator
- Posts: 16597
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
Hazel, hang in there with the Mirapex. It took me at least two weeks to get truly oriented to it. Start small, too. If possible, start at .125 mg. If he has you on more, you may want to drop it down. For people sensitive to meds, this can be very helpful.
I talked to Dr Mark Buchfurer at the conference about this. He said that he had just been at a session for healthcare providers about RLS. Many 'experts' were there. Turns out the they all had different ideas of what to do! That's because there are few studies and they all just guess at it! Your doctor may think one thing, but I will just about guarantee that another doctor will think something different. Specifically, he told me about starting and ending doses and titration schedules. He believes in 'low and slow.' But others had completely different ideas.
So, we need to be vocal. They really do not know what is best, because that has never been established. None of these people have had thousands of patients! They have had from a handful to a few hundred at best. Because RLS is so variable, this really isn't much for them to go on.
If it isn't working, say so. I personally prefer slow and low. It just makes sense to me to take less and work it up slowly so we don't make our brains crazy. No matter what, we al need to listen to our bodies, raise our hands vigourously when we don't get what we want, change doctors when required, take an advocate if we can't advocate or our brains are foggy, etc.
Glad to be back in my own bed!!!
Ann
I talked to Dr Mark Buchfurer at the conference about this. He said that he had just been at a session for healthcare providers about RLS. Many 'experts' were there. Turns out the they all had different ideas of what to do! That's because there are few studies and they all just guess at it! Your doctor may think one thing, but I will just about guarantee that another doctor will think something different. Specifically, he told me about starting and ending doses and titration schedules. He believes in 'low and slow.' But others had completely different ideas.
So, we need to be vocal. They really do not know what is best, because that has never been established. None of these people have had thousands of patients! They have had from a handful to a few hundred at best. Because RLS is so variable, this really isn't much for them to go on.
If it isn't working, say so. I personally prefer slow and low. It just makes sense to me to take less and work it up slowly so we don't make our brains crazy. No matter what, we al need to listen to our bodies, raise our hands vigourously when we don't get what we want, change doctors when required, take an advocate if we can't advocate or our brains are foggy, etc.
Glad to be back in my own bed!!!
Ann
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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cawilson0315
Burning Feet
Could this be the diabetic neuropathy that is nerve damage and causes feet to burn at the touch. Like having to sleep with feet out from under the covers, etc.
Can't wait to sleep!thanks Ann
Was taking Mirapex .125 till Nov 22. Not certain if it contributed to my melt down, but I was very depressed - very. And very tired, but restless. Enough so I took the entire week off from work and did not leave the house except twice.
Read in another thread about side affects, at the time I didn't contribute this to the Mirapex, but I was seeing things that weren't there... it was like catching glimpses of something moving out of the corner of my eye, but nothing was there.
My biggest problem, which could be the result of a multitude of things, my stress and aggitation levels were 10. Just basically angry all the time and this is NOT normal for me.
Got appt with GP went in, he had told me to go to labs for blood work for my AC1 and lupus, went to lab early, after an hour and half they say they can't find any paper work... go to GP appt, he doesn't have my records from gyno, doesn't remember telling me that he wanted to do lab work, doesn't the antivan help, no you told me you didn't want me to take that, so he writes script for 20 antivan to take as needed gives me samples of seroquel to help me sleep and if I am bipolar it will help in that too. What bipolar? yes some of the things you say make me think that might be the problem...
I know I am not far from hitting rock bottom. Oh and he writes my medical release for work and the script for the antivan as Mary, which I don't realize till after I have left the office.
Do not take Seroquel ... from my experience this is a big NONO... should have read more on it... took 50mg the night of the 22nd, all heck broke out... Nov 23 call gyno ask when they will transfer records they say they did last week, call dr and leave word with nurse that the med increases my rls and do they have my records yet... she calls back says the dr wants me to try 100mg of this crap and my records are some place in the building. So what do I do to myself, I take another 50mg just to prove I can't take it... and it is worse than the first time...
Since wednesday I have not taken anything... finally sunday from exhaustion I went to bed at 6:30pm, woke at 10-11pm, and back to bed till 7am this morning. I feel rested! hahahaha
One positive thing is I am no longer angry ... is it possible that the Mirapex was the underlying culprit there? Or the withdrawal of 5 years of antivan ... who knows!
Don't know about the diabetes neuropathy... I know I had mentioned this to one of the doctors. I guess since the fibro diagnosis I haven't given that much thought. Of course the gyno and the Rheumy are fibro orientated I don't think this GP is...
with the rls information I am taking with me, and the reports from gyno, and Will is going with me to share his insights maybe tomorrows visit will be more productive.
First I am calling to make certain they have my files, if not why go...
Still holding on to hope... have appt with neurologist friday. It is interesting that the sleep center here has him (he is from Wichita) as their consultant instead of a local neurologist . He is listed on this website... so I will be more than happy to share what I find out.
Row row row... carry the boat when needed, row row row... Hazey
Read in another thread about side affects, at the time I didn't contribute this to the Mirapex, but I was seeing things that weren't there... it was like catching glimpses of something moving out of the corner of my eye, but nothing was there.
My biggest problem, which could be the result of a multitude of things, my stress and aggitation levels were 10. Just basically angry all the time and this is NOT normal for me.
Got appt with GP went in, he had told me to go to labs for blood work for my AC1 and lupus, went to lab early, after an hour and half they say they can't find any paper work... go to GP appt, he doesn't have my records from gyno, doesn't remember telling me that he wanted to do lab work, doesn't the antivan help, no you told me you didn't want me to take that, so he writes script for 20 antivan to take as needed gives me samples of seroquel to help me sleep and if I am bipolar it will help in that too. What bipolar? yes some of the things you say make me think that might be the problem...
I know I am not far from hitting rock bottom. Oh and he writes my medical release for work and the script for the antivan as Mary, which I don't realize till after I have left the office.
Do not take Seroquel ... from my experience this is a big NONO... should have read more on it... took 50mg the night of the 22nd, all heck broke out... Nov 23 call gyno ask when they will transfer records they say they did last week, call dr and leave word with nurse that the med increases my rls and do they have my records yet... she calls back says the dr wants me to try 100mg of this crap and my records are some place in the building. So what do I do to myself, I take another 50mg just to prove I can't take it... and it is worse than the first time...
Since wednesday I have not taken anything... finally sunday from exhaustion I went to bed at 6:30pm, woke at 10-11pm, and back to bed till 7am this morning. I feel rested! hahahaha
One positive thing is I am no longer angry ... is it possible that the Mirapex was the underlying culprit there? Or the withdrawal of 5 years of antivan ... who knows!
Don't know about the diabetes neuropathy... I know I had mentioned this to one of the doctors. I guess since the fibro diagnosis I haven't given that much thought. Of course the gyno and the Rheumy are fibro orientated I don't think this GP is...
with the rls information I am taking with me, and the reports from gyno, and Will is going with me to share his insights maybe tomorrows visit will be more productive.
First I am calling to make certain they have my files, if not why go...
Still holding on to hope... have appt with neurologist friday. It is interesting that the sleep center here has him (he is from Wichita) as their consultant instead of a local neurologist . He is listed on this website... so I will be more than happy to share what I find out.
Row row row... carry the boat when needed, row row row... Hazey