Reversing Restless Leg Syndrome

[Polar Bear]

Thank you Michael for this update and great news.
Thank you also for your final paragraph and your words of encouragement to all sufferers.

[buglegs]

Just thought I'd post an update on my dopamine agonist free journey....It's been 63 days since taking my last dose of a Requip and my withdrawal symptoms continue to slowly diminish with time. I've been getting approx. 6-7 hours of good sleep nightly, poor sleep greatly contributes to activation of my RLS. The symptoms I'm experiencing now is....sharp piercing low level pain originating in the sides of my knees with numbness directly below the knee cap in the front of my legs, mostly concentrated on my left side, calve muscles sore as if I've over extended my stay on a stair stepper, insides of ankles sore/burning, although all these symptoms have been tolerable without any type of medications. I believe that most of these symptoms will continue to slowly diminish with time...being off these drugs for 63 days is just a drop in the bucket considering that I took them for 20 plus years, so I only expect everything to get better with time. Hope everyone suffering from RLS is finding relief in their own way..I believe relief comes in many different ways, you just have to search diligently for the one that works for you..God Bless!!

[Polar Bear]

Your determination is to be applauded.

I have numbness all the time and occasional burning which is neuropathy but I do take Pregabalin which helps. I also use sometimes Capsaicin cream and this provides relief for the burning after about 15 minutes.

Well done on getting sleep.

[Monolight1]

Just thought I'd post an update on my dopamine agonist free journey....It's been 63 days since taking my last dose of a Requip and my withdrawal symptoms continue to slowly diminish with time. I've been getting approx. 6-7 hours of good sleep nightly, poor sleep greatly contributes to activation of my RLS. The symptoms I'm experiencing now is....sharp piercing low level pain originating in the sides of my knees with numbness directly below the knee cap in the front of my legs, mostly concentrated on my left side, calve muscles sore as if I've over extended my stay on a stair stepper, insides of ankles sore/burning, although all these symptoms have been tolerable without any type of medications. I believe that most of these symptoms will continue to slowly diminish with time...being off these drugs for 63 days is just a drop in the bucket considering that I took them for 20 plus years, so I only expect everything to get better with time. Hope everyone suffering from RLS is finding relief in their own way..I believe relief comes in many different ways, you just have to search diligently for the one that works for you..God Bless!!

Wow, 63 days without dopamine agonists is a huge milestone! Sorry to hear you're still dealing with some RLS symptoms, but it's great that they're manageable. You're an inspiration to keep pushing forward.

[buglegs]

Good Morning Everyone...Well today marks the 80th day since stopping the dopamine agonist drugs. I haven't taken anything except B-12 and occasional Ibuprofen 800 MG at bedtime. I'm still periodically having a cluster of physical and psychological symptoms which is DAWS, i.e. apathy, panic attacks, depression, agitation, fatigue, drug cravings, pins and needles feeling cycling throughout my body, occasional muscle pains and burning sensations (thighs, calves and ankles) and cycles of feeling hot one minute and cold the next. The information I've been able to find on Dopamine Agonist Withdrawal Syndrome (DAWS) has been very limited, the information I've read indicates no standard treatment exists for DAWS which can last for months or years other than the re-introduction of dopamine agonist drugs and the risk of augmentation is very high, so I'll pass on that option. It seems to all depend on how long and how much dopamine agonist drugs one has taken over the years, so I'm just taking it one day at a time. Even with all that said I feel much better without the DA drugs, all my symptoms are at a manageable level which come and go. The biggest things that have helped me is..trying to eat healthy, exercise, using my CPAP and regular sleep schedule...overall I feel great and believe that this DAWS will eventually be a thing of the past..Hope everyone is finding a coping mechanism for their RLS...have a great day!!

[buglegs]

Just checking-in with everyone...today makes 101 days since stopping the dopamine agonist drugs, still haven't taken anything but Ibuprofen 800 MG at night on few a occasions. I feel great the RLS seems to be getting better and better everyday since stopping the dopamine agonist. The current RLS symptoms that I've been having is very slight burning/achy feeling in my calve muscles and inside legs at the ankles, nothing extreme, just feels like a light sunburn or something. I first thought the burning feeling in my legs was neuropathy, so I had the EMG/Muscle testing done with neurology at VA Hospital, the nerve/muscle conduction test results were all normal, no neuropathy detected. My RLS symptoms directly correlate with the quality of sleep I get using this CPAP machine. I have the RESMED 11 auto-set and use the nasal mask, seems like the face mask just makes me feel too claustrophobic. The nights that I have trouble sleeping with my mask seems to be because one side or the other of my nose in congested, poor sleep equals depression and more intense RLS symptoms the following day but at very tolerable levels. Its been 101 days since stopping the Requip and I'm still periodically having all the symptoms listed for Dopamine Agonist Withdrawal Syndrome (depression, anxiety, panic attacks, very easily agitated and craving alcohol and drugs). The symptoms have become less frequent and less severe as times goes by, I'm just wondering how long this DAWS is really gonna last because all my research indicates that DAWS could last for months or years, the only way to stop the DAWS is to supposedly re-start the dopamine agonist, NO-WAY...Even with all the symptoms I'm experiencing, I'd have to say my RLS IS 80%-90% BETTER WITHOUT THE DOPAMINE AGONIST DRUGS. I've continued taking B-12, eating healthier meals without the sweets, this part has been rough (especially cutting out my nightly ice cream), getting more exercise but not over doing it because that will make the RLS worse, and the most important part for me is ensuring that I use my CPAP every night. The key to using my CPAP is making sure that the set-up and fitting is correct, this takes constant trial and error until you get everything adjusted right but its proven to be very important for combatting my RLS symptoms. So, I'm doing great and getting better and better everyday..I'm just thankful for this website because without it I would have never thought or known about dopamine agonist augmentation and lots of other very helpful information during this journey, thanks to all the moderators that take the time to keep this site up-to-date and operational, your'e an inspiration to all of us suffering from this terrible disease, thanks for caring!! Hope everyone has a RLS free night or at least gets some quality sleep...

[Rustsmith]

Keep experimenting with different CPAP masks. I have been on CPAP for about ten years now. I have to use a full face mask and have tried quite a few with varying degrees of success. The companies are continually coming out with new designs so just because you have one that works most of the time today doesn't mean that there isn't something better or that a better product for you won't be available soon. I buy my own equipment via mail order, so I am not tied to only the masks available from an equipment vendor since the vendors often tend to represent just one or two manufacturers and not everyone.

[buglegs]

Thanks Steve.....I believe that a full face mask would be beneficial combating my sleep apnea greatly reducing the struggles with RLS, like you said I just have to keep experimenting with the different mask available...thanks...

[Polar Bear]

Congratulations on reaching 101 days.
I also use a cpap, just the nasal mask which suited me well from day 1 which was five years ago.I had no idea that it would help my Rls to the extent that it does.

[beckycolorado]

Such a great story.

My question to the members of the discussion board: has anyone from Colorado ever done this type of taper? If so, did you have a supportive doctor you worked with?

Am still searching for a doctor in Colorado. Thanks for any suggestions you all may have.

[buglegs]

Well today makes 117 days being dopamine agonist FREE and I haven't had to replace them with any other type of drugs...thank goodness my symptoms have been very manageable without any type of medications. I'm still having symptoms that define DAWS and still wondering how long they gonna last, they are not constant but come go, weird part is no one seems to know the duration of DAWS....Overall, I've been sleeping good at night my RLS is currently below the knees, calf muscles and ankles slight burning sore feeling, kind of like a very light sunburn, other than that slight tingling every now and again, overall 80% - 90% better without any types of medications...This has been one of the hardest things I've ever had to overcome, the medical world is definitely lagging way behind when it comes to this horrible disease, especially with the medications authorized and how to effectively treat its affects. Hope everyone has a great rest of your weekend...

[Polar Bear]

117 days. Well done.

About the burning feeling that is like sunburn. I get this and it is (supposedly) neuropathy and I take medication which works well. Occasionally the burning still happens but it is somewhat relieved by Capsaican creams (on prescription) but I don't know if it is also available over the counter. Derived from peppers.
Unfortunately it appears to be unavailable at present. The local pharmacists can't get it and I can't find it on line. Seemingly there is an issue with production. I have only a few inches left in my current tube.
I have previously used over the counter icy gels and sprays but nowhere near as good as the pepper derivitive.

Also putting my feet/lower legs into a bucket of icy cold water for about 20 minutes. This was actually for rls symptoms but it also seemed to 'district's the burning sensation.
Any little benefit is a bonus.

[Rustsmith]

the medical world is definitely lagging way behind when it comes to this horrible disease,

Unfortunately, this is true of most of the neurological and sleep diseases. My wife has MS and most of what is known about that neurological disease rose out of studies into HIV since both involve the immune system.

The problem is that it is difficult to study a disease when the researchers cannot study a living organ, like they can with heart, liver and kidney diseases. Most of what is known about neurological diseases comes from the study of brains from cadavers. Yes, MRI machines and now PET scanners allow them to do some research work, but these machines have only been around for a few years compared to x-ray and CAT scan machines.

The other difficulty with RLS is that it exists over such a wide range of severity and is not a disease that causes death, like Parkinsons. As a result, it gets less emphasis. The other sleep disorders suffer from much the same problem of lagging research. Almost nothing is known about some other common sleep disorders, such as REM Sleep Behavior Disorder and Narcolepsy 1 and 2.

[buglegs]

Well Good Day Everyone....122 DAYS today without taking any dopamine agonist drugs or any other type. I'm still experiencing slight burning/muscle pain in my lower legs mostly calves and ankles, some days its hardly noticeable and other days its of a moderate level of intensity. I had the EMG test done few weeks ago which showed no signs of neuropathy in my legs, so I can rule that out. I also had a recent sleep study done which showed my sleep apnea to be well controlled (1.0 - 2.0 apneas per hour) with the use of my CPAP. I was diagnosed with severe PLMS over 120 movements per hour, legs steady kicking which greatly contributes to very poor quality of sleep. I'm sleeping or unconscious approximately 6-7 hours most nights and seems like I get a good nights sleep about every (3) days.. you know to where I have lots of energy, less depression, anxiety, panic attacks, agitation...just don't know how much of these symptoms are standard RLS or how much can be attributed to DAWS..either way I feel way better than when I was on the Requip. Hopefully the symptoms I'm having will continue to diminish as more time goes by being off the dopamine agonist drugs. The symptoms at this point are more of a nuisance than anything else, so far they have been manageable without other type of medications except I do take Ibuprofen every now and again which helps sometimes...My biggest concern at this point is how long will the DAWS linger??? The medical world don't seem to have an answer for this question, its just says that DAWS could last months or years...I'd hate to think I could actually have DAWS for years but all I can do is take it one day at a time..Hope everyone has a great day!!

[Polar Bear]

You have already been taking it one day at a time, for 122 days and look how far you have come..... What you have achieved is wonderful.
Unfortunately the treatment for PLMS is generally a dopamine agonist such as ropinerole or gabapentin, and you wish to be drug free.
DAWS has no standard treatment (other than the reintroduction of a DA). I'm afraid, as you know, it is a matter of time.