Ok so here I am again up at 3:30am and have been up since 2:00 and I have to get ready to go to work again at 6:30..same routine almost every night.
So my questions this time are does rls have anything to do with severe leg cramping, the kind that puts you to the floor so you can't do anything but lay there and cry? This keeps happening on and off, not every night and not every week but when it does happen it's awful. I don't remember getting cramps like this until this RLS got so bad in Aug. And if this is something that goes along with RLS can it happen in the daytime? I would hate to be at work or out in public and have this happen!!
Also I have been reading that RLS and ADHD might have something to do with each other, wondered if that is true. I have been treated for ADHD for a couple years and take Adderall 20mg-2 in the am and 1 in the afternoon, I only take it on days that I have to work and concentrate, but I work 4 days each week. Does Adderall make things worse?
I'm just trying to find some answers to this RLS..this is the worst thing I have had to deal with in my life, I know I post things after starting a new drug or whatever the dr wants to try and it seems like a couple things might work for a day or so then things go back to where they were, and I understand that it's all a matter of finding what drugs work best for me but when does it end and when do you get to sleep more than a couple hours at a time and how long can a person's body and mind keep going at this rate? So far I think I'm doing ok without much sleep, I haven't ripped anybody's head off yet and I seem to still be functioning ok during the day and able to concentrate and do my job but I know that it can't be healthy to not sleep.
So those are my questions of the day/night!! One last thing I have started a story and putting this whole nightmare in writing I call it "My Journey into hell with RLS", I thought if I try to keep track of everything that has gone on that one day if by some horrible chance that I have passed this mess onto my son or grandson and any other family that will come along down the line that it might help them to understand what is happening to them plus it helps me to just put it in writing to keep track of everything. The hard part has been going back the last 2+ years and trying to recall what all happened and the drugs that I was taking. Up until Aug this year things were under control, the Requip and Mirapex did what they were supposed to do then, still don't understand the whole process or why in Aug everything got so out of control and can't find any drugs that will help. I guess it's a learning process!!
Thanks for listening and any input you might have.
Pam
More questions
RLS and ADD/ADHD are NOT related.. People usually just say that in an ignorant response to the syndrome itself, or to try and scapegoat legitimate RLS with another condition such as hyperactivity.
They are in no way the same, however some ADD/ADHD medications like Adderal, do seem to help some RLS patients..
RLS can be painful, however if you are having leg cramps severe enough like you are describing I would push your physician to try and find another cause, just to rule anything out..
Another condition commonly confused with RLS is nocturnal leg cramping, which is usually treated with quinine - this is where these dubious reports of patients with RLS who "cure it" with quinine pills, or seltzer water, come from. There may still be experts out there who believe quinine helps RLS, but as far as I can recall, none of the more prominent ones believe it does anything, or helps in any significant way.
Can you describe any other symptoms for us also? Do you experience creepy-crawlies, flowing water/bubbling soda type sensations? electrical sensations, or any kind of buzzing feeling?
And most importantly are any of your symptoms relieved by movement?
If not, it is likely you may not have RLS at all, and you might need to push your physician to find out what else could be wrong, whether it is nocturnal leg cramps, or something else.
Also.. are you -currently- taking Requip or Mirapex? If so, what dose are you on, and how long have you had these intense cramps? People have reported painful side effects from Requip, and if you are on a high dose and augmenting, then it is also most likely reqip.
If you're not on anything, but recently got off meds, this is likely a worsening of your RLS due to stopping the medication, and can also be residual augmentation from before you stopped. Dr. B usually recommends that during this period, patients should be given a mild potency opiod, like Hydrocone (Vicodin) or even something a little stronger like Oxycodone if the symptoms are especially difficult.
Also, you should know that opiates in and of themselves are also a recognized and legitimate treatment for RLS long-term. And there is no shame in taking them, and no shame in asking your physician about them. Opiates are one of the single most effective treatment options, and good candidates are people that have responded poorly to both Requip and Mirapex, as well as other additional medications that may have been tried beforehand.
There is the Mayo Clinic algorithm for RLS, which describes how to diagnose it and what treatment options may be suitable for patients. It pretty much explains in detail what I have summed up, and is meant to be a physician-aid the patient can print out and take with them to the office. Here is an HTML version... its formatted a little differently than the PDF, but mentions additional medications and options such as low-potency and high-potency opiods, benzodiazapenes, Gabapentin(neurontin)/Lyrica and stuff like that
http://www.mayoclinicproceedings.com/in ... ef=7907crc
They are in no way the same, however some ADD/ADHD medications like Adderal, do seem to help some RLS patients..
RLS can be painful, however if you are having leg cramps severe enough like you are describing I would push your physician to try and find another cause, just to rule anything out..
Another condition commonly confused with RLS is nocturnal leg cramping, which is usually treated with quinine - this is where these dubious reports of patients with RLS who "cure it" with quinine pills, or seltzer water, come from. There may still be experts out there who believe quinine helps RLS, but as far as I can recall, none of the more prominent ones believe it does anything, or helps in any significant way.
Can you describe any other symptoms for us also? Do you experience creepy-crawlies, flowing water/bubbling soda type sensations? electrical sensations, or any kind of buzzing feeling?
And most importantly are any of your symptoms relieved by movement?
If not, it is likely you may not have RLS at all, and you might need to push your physician to find out what else could be wrong, whether it is nocturnal leg cramps, or something else.
Also.. are you -currently- taking Requip or Mirapex? If so, what dose are you on, and how long have you had these intense cramps? People have reported painful side effects from Requip, and if you are on a high dose and augmenting, then it is also most likely reqip.
If you're not on anything, but recently got off meds, this is likely a worsening of your RLS due to stopping the medication, and can also be residual augmentation from before you stopped. Dr. B usually recommends that during this period, patients should be given a mild potency opiod, like Hydrocone (Vicodin) or even something a little stronger like Oxycodone if the symptoms are especially difficult.
Also, you should know that opiates in and of themselves are also a recognized and legitimate treatment for RLS long-term. And there is no shame in taking them, and no shame in asking your physician about them. Opiates are one of the single most effective treatment options, and good candidates are people that have responded poorly to both Requip and Mirapex, as well as other additional medications that may have been tried beforehand.
There is the Mayo Clinic algorithm for RLS, which describes how to diagnose it and what treatment options may be suitable for patients. It pretty much explains in detail what I have summed up, and is meant to be a physician-aid the patient can print out and take with them to the office. Here is an HTML version... its formatted a little differently than the PDF, but mentions additional medications and options such as low-potency and high-potency opiods, benzodiazapenes, Gabapentin(neurontin)/Lyrica and stuff like that
http://www.mayoclinicproceedings.com/in ... ef=7907crc
Last edited by Neco on Fri Oct 17, 2008 3:57 pm, edited 3 times in total.
i dont really get leg cramps like that "all" the time...occasionlly maybe, but if you are getting leg cramps that bad you may want to speak with your dr about your potassium level.. if you have low potassium it will give you horrible leg cramps. talk to your doc about him/her checking your potassium level.
i don't really know about the adderall, i do know that most anti-deppressants can make rls worse, adderall i'm not sure...i am sure tho someone here can answer that for you....but def get your potass checked.
dee
i don't really know about the adderall, i do know that most anti-deppressants can make rls worse, adderall i'm not sure...i am sure tho someone here can answer that for you....but def get your potass checked.
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
-
ViewsAskew
- Moderator
- Posts: 16584
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
Pam, you ask a lot of interesting questions.
Per the cramping, the kind of cramps you are getting do not sound like RLS. The doctors are pretty clear on differentiating this. RLS can be painful and pain can be a pulling type of pain, but it isn't that cramping feeling of a muscle that is bound into a knot. As Tazzer said, cramps like that can be relieved by some supplements that your body may be missing - vitamin E, potassium, calcium, magnesium are all indicated by different practitioners.
RLS and ADD is a more interesting topic. They both do result from issues with dopamine in the brain. And, the doctors think that many children diagnosed with ADD or ADHD may really have had RLS, not ADD or ADHD. But, is there a connection? They haven't found one yet, but they are studying it.
Per the medication, there have been a few people who came here and have said their ADD medicine HELPS the RLS. That doesn't mean it would for everyone. REcently, at the Midwest RLS meeting, the doctor was asked about this. He said that stimulants have long been known to help RLS, but that it doesn't help most of us because we have RLS at night, so a stimulant would be a bad thing.
Per the cramping, the kind of cramps you are getting do not sound like RLS. The doctors are pretty clear on differentiating this. RLS can be painful and pain can be a pulling type of pain, but it isn't that cramping feeling of a muscle that is bound into a knot. As Tazzer said, cramps like that can be relieved by some supplements that your body may be missing - vitamin E, potassium, calcium, magnesium are all indicated by different practitioners.
RLS and ADD is a more interesting topic. They both do result from issues with dopamine in the brain. And, the doctors think that many children diagnosed with ADD or ADHD may really have had RLS, not ADD or ADHD. But, is there a connection? They haven't found one yet, but they are studying it.
Per the medication, there have been a few people who came here and have said their ADD medicine HELPS the RLS. That doesn't mean it would for everyone. REcently, at the Midwest RLS meeting, the doctor was asked about this. He said that stimulants have long been known to help RLS, but that it doesn't help most of us because we have RLS at night, so a stimulant would be a bad thing.
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.
thanks for the information from each of you. I just wanted to make sure that the Adderall wasn't making things worse, also glad that it probably isn't because I really do need it when I have to concentrate and really remember the important little things which I have to do each day at the job.
As for the leg cramps although I don't get them everynight or even every week when I do get them they are bad and since they probably aren't related to RLS I guess I will start searching for the cause of them, I don't think that in all the bloodwork I have had over the last few years that my potassium levels were ever checked, mainly bloodwork was to check my ferratin and b-12 levels along with the usual stuff.
Zach you asked about symptoms, mine aren't the same as most people which is why this whole diagnosing RLS has been hard for me to except. My only bad feelings are in my ankles, there is a pressure feeling from the inside feeling like my ankles could explode, the only relief is to get up and stand this has gotten worse over the last couple years with the last few months being the worse. I also bounce and shake my legs all the time and I have done that my whole life along with numerous family members all the way back to my grandfather but there was never any discomfort associated with it for me or anybody else, the only people that bothered were the people around us, my grandfather used to say that when we bounced our legs up and down (sewing machine legs) we were taking the devel for a ride.
As for drugs I have tried besides the Requip and Mirapex which did help for about 7 months ea. I have tried the Requip XL with bad side effects. I am now on Neurontin 100mg 3x daily should have increased it about a week ago to double the dose, but I was having nightmares when I did that so waiting to see dr. before increasing anymore, bad enough to only get a couple hours sleep at a time but to have that sleep filled with nightmares wasn't fun. As for other drugs I have tried Flexeril 10mg which didn't touch the discomfort even when I doubled the dose, a few times I took that with vicoden still didn't touch it and also tried adding darvocet and xanax to the mix with no relief, just got real sleepy but couldn't lay down then I was just miserable having to stand laying over a counter because I was so drugged but had to stand up, they weren't fun nights, also was afraid that if I kept mixing all the drugs I might screw up big time and overdose so quit doing it. Then the dr. started me on Vistaril 50mg which I don't suggest, things went from bad to worse. My new drug is Librium which doesn't do much either, I took 50mg last evening and went to bed around midnight and back up at 2:30, so here I am again typing and complaining and feeling real drugged, but I can't lay down anymore or I may go crazy!! The only other drugs I am on is Wellbutrin, and Hydrochlorathiazide for blood pressure along with b-12,vit-c, multi vit and ferro-sequals when I can find them. Last time my ferritin levels were checked in Aug my ferratin was up to 78 from 33 in April so that is coming in to range I guess.
As for the doctors I have seen for this I have been to a neurologist had an emg, no nerve damage and didn't like the doctor, also a foot/ankle specialist he gave me Biofreeze to try and at first I thought it was helping some but after a few nights of up every 2 hours to reapply figured it wasn't helping much but I will say it does feel good for a little bit, think I'll keep some around for other aches and pains. Also have had x-rays of both ankles and didn't show any problems so final diagnoses is RLS which isn't what I wanted to believe, I wanted my problems to be anything else but that, something that actually had a cure. I have told people sometimes it would almost be worth it to have my ankles cut off so the feeling would go away, but like my hubby said with my luck I would get phantom pains and still be miserable and not have any feet to stand on!! So the only thing is to keep looking for my combination of drugs that might give me some relief.
Oh and I did just a couple nights ago try smoking pot didn't help the feelings at all and didn't help me to sleep, just made things a little more easy to except mentally, but since it is illegal and I don't want to end up in jail or worse won't keep trying that not to mention the cost of it. But it did bring back memories of my teen years growing up in the 70s. Although it is on the ballet in MI to legalize it for medical purposes so if it by some chance goes through I might consider asking for a script just for the mental relief that it gave!! I think I'm just getting desperate and tired and want to just lay down and get a good 8 hours of uninterupted sleep, that sounds sooooo nice.
Well thanks again to each of you. Pam
As for the leg cramps although I don't get them everynight or even every week when I do get them they are bad and since they probably aren't related to RLS I guess I will start searching for the cause of them, I don't think that in all the bloodwork I have had over the last few years that my potassium levels were ever checked, mainly bloodwork was to check my ferratin and b-12 levels along with the usual stuff.
Zach you asked about symptoms, mine aren't the same as most people which is why this whole diagnosing RLS has been hard for me to except. My only bad feelings are in my ankles, there is a pressure feeling from the inside feeling like my ankles could explode, the only relief is to get up and stand this has gotten worse over the last couple years with the last few months being the worse. I also bounce and shake my legs all the time and I have done that my whole life along with numerous family members all the way back to my grandfather but there was never any discomfort associated with it for me or anybody else, the only people that bothered were the people around us, my grandfather used to say that when we bounced our legs up and down (sewing machine legs) we were taking the devel for a ride.
As for drugs I have tried besides the Requip and Mirapex which did help for about 7 months ea. I have tried the Requip XL with bad side effects. I am now on Neurontin 100mg 3x daily should have increased it about a week ago to double the dose, but I was having nightmares when I did that so waiting to see dr. before increasing anymore, bad enough to only get a couple hours sleep at a time but to have that sleep filled with nightmares wasn't fun. As for other drugs I have tried Flexeril 10mg which didn't touch the discomfort even when I doubled the dose, a few times I took that with vicoden still didn't touch it and also tried adding darvocet and xanax to the mix with no relief, just got real sleepy but couldn't lay down then I was just miserable having to stand laying over a counter because I was so drugged but had to stand up, they weren't fun nights, also was afraid that if I kept mixing all the drugs I might screw up big time and overdose so quit doing it. Then the dr. started me on Vistaril 50mg which I don't suggest, things went from bad to worse. My new drug is Librium which doesn't do much either, I took 50mg last evening and went to bed around midnight and back up at 2:30, so here I am again typing and complaining and feeling real drugged, but I can't lay down anymore or I may go crazy!! The only other drugs I am on is Wellbutrin, and Hydrochlorathiazide for blood pressure along with b-12,vit-c, multi vit and ferro-sequals when I can find them. Last time my ferritin levels were checked in Aug my ferratin was up to 78 from 33 in April so that is coming in to range I guess.
As for the doctors I have seen for this I have been to a neurologist had an emg, no nerve damage and didn't like the doctor, also a foot/ankle specialist he gave me Biofreeze to try and at first I thought it was helping some but after a few nights of up every 2 hours to reapply figured it wasn't helping much but I will say it does feel good for a little bit, think I'll keep some around for other aches and pains. Also have had x-rays of both ankles and didn't show any problems so final diagnoses is RLS which isn't what I wanted to believe, I wanted my problems to be anything else but that, something that actually had a cure. I have told people sometimes it would almost be worth it to have my ankles cut off so the feeling would go away, but like my hubby said with my luck I would get phantom pains and still be miserable and not have any feet to stand on!! So the only thing is to keep looking for my combination of drugs that might give me some relief.
Oh and I did just a couple nights ago try smoking pot didn't help the feelings at all and didn't help me to sleep, just made things a little more easy to except mentally, but since it is illegal and I don't want to end up in jail or worse won't keep trying that not to mention the cost of it. But it did bring back memories of my teen years growing up in the 70s. Although it is on the ballet in MI to legalize it for medical purposes so if it by some chance goes through I might consider asking for a script just for the mental relief that it gave!! I think I'm just getting desperate and tired and want to just lay down and get a good 8 hours of uninterupted sleep, that sounds sooooo nice.
Well thanks again to each of you. Pam