Help!

[Taco Bill]

I am very grateful for this board and the rls site. Thank you RustSmith for the nice welcome. I definitely feel less alone. RLS is lonely and insidious. The RLS started circa 2003. The year 2005 was the first time I sought help. I went to a primary care doc and was prescribed Requip which did absolutely nothing except make me nauseous. Soon after I went to see a chiropractor. He was convinced it was sciatica. I have found the hammer/nail analogy to be true with lots of doctors. I spent a month going everyday to decompression therapy. I also did physical therapy. In hindsight I suppose it helped, but the RLS was a lot less severe than now.

It was pretty sporadic until around 2010. Although intermittent, it wreaked havoc on jobs and relationships. It cost me two jobs overseas and a couple of relationships. RLS combined with sleep apnea, PLMD, night terrors, PTSD, and treatment resistant depression has been a devastating combo. From 2010 to January of 2014, I would say conservatively that half of my nights were sleepless. It was in January of 2014 I took a couple of Tramadol for my back and discovered my RLS disappeared. From then until around a year and a half ago I was taking 100mg, at which time my pain management doc upped it to 150. In the last year or so I have built up tolerance or the RLS is getting worse. I've read that Tramadol is the only opiate that can cause augmentation. It doesn't seem like it, but who knows.

My pain doc turned out to be a real jerk. His exact words were, "RLS is a bogus diagnosis". I remember because the word bogus is so 80s. If he didn't have the tools to fix it, it didn't exist. I underwent several epidurals in my lower spine and too many trigger point injections to count. I finally had enough of his bs and arrogance when he gave me an ultimatum. To loosely paraphrase, he basically told me that if I want any more Tramadol, I would have to get a spinal stimulator implant. He has this attitude that because he is a deity, I mean MD, that I couldn't possibly bring any information of value. The last time I saw him was last April. Since then I have been going to a primary care doc who has reluctantly prescribed me Tramadol but does the whole guilt and shame thing and will only give me 2/3rds of my previous dose. I basically have to beg for my life every month. I feel like I am being blamed for it. I've also tried Mirapex and the alpha 2 ligands, neither of which did diddly squat. Things have really gotten bad since the CDC guidelines came out. We are treated like children, and also like addicts and criminals. Not to go off on a tangent, but isn't this supposed to be the land of the free? I think it's an intentional culling of the herd by our tyrannical government, but I digress.

I haven't worked in a year. After a horribly abusive childhood and dropping out of high school because I needed to work to eat, I somehow managed to return to school and finish a masters degree. I became a teacher and was really passionate about it. RLS took that away from me. I can't count how many days I dragged myself to work despite zero sleep. Unfortunately my body can't run on only hopes and aspirations. I need sleep! I am home-less in that I don't have a place to call home. I am staying at a place where I keep things up in lieu of paying rent, kind of like the old Roger Miller song King of the Road. On my bad days, which is most, it is absolute hell to accomplish anything, but I must, lest I become homeless. I live hand to mouth. My finances and credit are destroyed. Some days are so bad that even doing something as simple as making a phone call can be anxiety provoking. Sad to say but really the only thing keeping me from suicide are the dogs I take care of where I live. I am 46, never married, no kids, and my family of origin is completely estranged and has been for decades. The only person I communicate at all with is my mom. To her credit she has helped me as much as she can.

The good news is that I live 47 miles from Dr. B in Downey and have an appointment there in a little over three weeks. There is also a quality care center at Scripps in La Jolla which is 67 miles from me. From everything I read I am guessing I am probably going to need something stronger than the Tramadol. I found it very comforting to discover there are people in the same boat.

If anyone can relate, has any thoughts or insights, I am all ears. Thank you for reading and thank you for all of your helpful posts.

[Bridgercan]

Hey Taco Bill-a big welcome and thank you for sharing your story! I don’t have much in the way of insight or thoughts, but I’m just replying to acknowledge you and what you shared. You’ve had a very tough time, and most sadly, a lot of negativity from health care providers. I hope you can find a sense of community in the forum; there is much support to be found here. There’s usually someone online most hours of the day or night, and for me it helps to write and post knowing I’ll be heard by people who get it. In this forum you can express yourself as truthfully and candidly as you wish without fear of judgment. That in itself is very freeing, and even better are the supportive, thoughtful responses you’ll get. It certainly has helped me feel a lot less lonely in the wee restless hours of the night. Perhaps there is a support group near you. I’m in rural Montana so I rely on the forum and texting insomniac friends to get through the worst nights.

It sounds like you’re fighting the best as you can, and it is good to hear you’ve got an appointment with Dr B. I’ve had a number of bad experiences with MD’s, going back sixteen years, though none approaching the level of your experiences. But as we’ve all come to learn, RLS/WED is a tough disease to manage and even harder to find caring, competent health care providers experienced in treating the disease. When you do find a doctor who gets it, as I have in my primary care doc, it’s transformative—to be able to work together as a team, complete with good communication and mutual trust, in tackling the disease. It’s an incredible godsend! I hope you’re able to find that with Dr B.

Reading your post, I got the sense you’re a survivor, that you come back and succeed in the face of strong adversity. You’ve made it this far I imagine through grit and determination, and I admire you for that. I’ve been through the whole RLS/WED pharmacy, supplements, iron IVs, kratom, CBD products, devices, accupuncture, and any number of home remedies, so feel free to ask about my experiences. In the meantime, hang in there!

[Rustsmith]

Taco Bill, it is unfortunate that many of the portions of your story about doctors are things that most of us can relate to in our own past. Most of us have "fired" doctors or been fired by them and opioids are often part of the conversation.

You will be in excellent hands with Dr B and Scripps is also a great place for RLS help. Both of them will be happy to provide you with an opioid if that is what is needed.

As for Tramadol, you may find that Dr B will want to switch you to methadone. Both meds work well on RLS (I am currently on Tramadol ER but was on methadone for several years). Methadone seems to be preferred (not just because of the augmentation aspect) and you will find that it is much less expensive.

[Polar Bear]

Taco Bill - I read your story with sadness, so sorry that after such a long time you still are fighting for help.

However - you are going to see Dr B. Wow !! He is the man...... I am so happy for you.
Three weeks will roll in.
I've heard of other sought after experts where it takes 2 or 3 months to get an appointment.

So many of us understand what you are going through.

[ViewsAskew]

Taco Bill - I actually moved to So Cal so I could be close to Dr. B. If anyone can help, he can.

[Pleasuredeal]

I always had a problem with RLS going back to when I was a teenager. I just did not know what it was until in 1994 ( 46 year old), I read something about it and knew then this is what I had. As a teenager my RLS symptoms were an urge to move my legs , get up and walk. Sometimes in the middle of a sixty minute class I would just get up and walk out of the classroom.

In 1994 I mentioned it to my family doctor, who prescribed quinine. It did not helped much, but it did help some.

When I moved to NC in year 1998 and saw a new doctor, he said I had to see a neurologist. The neurologist insisted that I go through a sleep study . I did, they confirmed the RLS by my legs being jumpy while sleeping and also sleep APNEA.

I started using a CPAP and the neurologist prescribed Sinamet for RLS. He told me not much was known about RLS and little research was done about it because some of the meds used for Parkinson also worked for RLS at a small dosage.

Sinamet worked fine for about 6 months. I was taking one tab every evening. But then the RLS started to get worse, it would also bother me during day time. The neurologist increased the prescription several times. 6 months later I had to take a pill every 6 Hours. The first neurologist I consulted retired and the second one did not seem to know much about RLS. When I told him about my issues with Sinamet he told me : ´´you seem to be a smart man why don’t you do some research and see what you can find about Sinamet and RLS. He also said we could try a narcotic such as Valium .
After some research, I found out that for 25% of the people, Sinamet caused augmentation of the RLS symptoms. The study said to try Mirapex, it did not have the same problem. It mentioned it could also cause augmentation but over a much longer period of time. I printed what I found and gave it to my neurologist. We both were reluctant in trying a narcotic and decided for mirapex.
The neurologist changed the prescription to Mirapex, one .5mg tab per day. It worked fine from year 2001 to year 2006.

Then gradually with Mirapex I was getting the same augmentation syndrome. my prescription was increased from .5 mg to 1 mg twice per day. This worked ok from 2006 to 2010.

The last neurologist I consulted in 2009 asked me to try Gabapentin 600 mg three times daily. I tried and it did not work for me, RLS was bad at night. I went back to Mirapex and increased my prescription to three 1mg of Mirapex per day.

In 2010 I started having bad knee pain on my right knee requiring a total knee replacement. I was also retired on a small farm and 10 acres of woodland with a lot of physical including walking work to do. I asked my doctor if he could help me with the pain so I could be more physically active ( I had gained 50 Lb). He prescribed an opioid 15mg during the day, then I realized that when taking the opioid I did not have the RLS symptoms. I was also starting to uncover some of the bad side effects with Mirapex, it was like peeling an onion. So the doctor suggested that I drop Mirapex and stay with the opioid 15 mg per day. Because of the laws restricting opioid , I had to go get a new script every month take it to a pharmacy who would order it and go get it the same day they received it . My neurologist helped by increasing the prescription to two pills a day to give me a back up stock while I had to go through this Chinese Drill to get get my meds. Needless to say the pharmacist preferred my $250 per month mirapex prescription to the $6 per month for opioids.


I did good for RLS with the opioid from 2010 to 2013. When I moved to SC in August 2013, my new family doctor did not want to prescribe an opioid. So I went back to Mirapex. I restarted with .25 mg once a day and gradually had to increase to 3 tabs 1 mg .
Through a lot of searching on the internet I uncovered several bad side effects I had because of mirapex : listed in order of importance or severity

1. Augmentation. It’s like if you were given a pill for a migraine , you get immediate relief but also get increasingly more migraines and each migraine with worst pain. Need to take more pills: drug manufacturers more $$ and your pharmacist richer and may be your prescribing doctor a trip to Hawaï all expenses paid .
2. Sudden Day Time Sleep : I lost conscience and was taken to ER
five times . Two car accidents . Lost my driver license
3. Less than four hours of sleep per night
4. DiffIculty with focussing and short term memory : lost three jobs
5. Over eating : prior to Mirapex my weight had always been stable then I gained more than 100 lbs
6. Hallucinations : not knowing what is real and not
7. compulsive behaviours including gambling, sex such like addiction to ***** sites
8. Impulse buying , shopping
9. Shortness of breath
10. Oedema both legs
11. Tingling in my fingers at night
12. Night mares: waking up screaming, sleep walk


The first warning about possible side effects with Mirapex appeared on the RX sheet around 2005. It said possible compulsive behaviours like gambling. I just checked the recent RX sheet and it now includes several of the side effects listed above. The FDA are still saying it has not been proven yet despite all the evidence and are now trying to put the same controls they have over opioid on Kratom.

Pfizer increased their price for Mirapex to push users on its generic , pramepixole , and avoid lawsuits. A lawyer told me I would have to only have used Mirapex to stand a chance to get a judgement and suing the generic drug manufacturers would be very difficult and they may not have the money to pay for settlements.
Big Pharma’s lobbyists are busy inciting our elected officials to vote for laws controlling opioids because they are cheaper, a lot cheaper and a lot more effective than their expensive drugs.

I know take gabapentin 1200 mg per day with limited success, but most of the Pramipexole side effects are gone. I used Kratom for six months to help me ween out of Pramipexole . I stopped using Kratom because of a warning by the FDA about dangerous side effects with using Kratom . I don’t know where they get their information .... $$$$
We all know it only takes a little bit of opioid to control RLS , why can’t we get it ?

[Pleasuredeal]

I always had a problem with RLS going back to when I was a teenager. I just did not know what it was until in 1994 ( 46 year old), I read something about it and knew then this is what I had. As a teenager my RLS symptoms were an urge to move my legs , get up and walk. Sometimes in the middle of a sixty minute class I would just get up and walk out of the classroom.

In 1994 I mentioned it to my family doctor, who prescribed quinine. It did not helped much, but it did help some.

When I moved to NC in year 1998 and saw a new doctor, he said I had to see a neurologist. The neurologist insisted that I go through a sleep study . I did, they confirmed the RLS by my legs being jumpy while sleeping and also sleep APNEA.

I started using a CPAP and the neurologist prescribed Sinamet for RLS. He told me not much was known about RLS and little research was done about it because some of the meds used for Parkinson also worked for RLS at a small dosage.

Sinamet worked fine for about 6 months. I was taking one tab every evening. But then the RLS started to get worse, it would also bother me during day time. The neurologist increased the prescription several times. 6 months later I had to take a pill every 6 Hours. The first neurologist I consulted retired and the second one did not seem to know much about RLS. When I told him about my issues with Sinamet he told me : ´´you seem to be a smart man why don’t you do some research and see what you can find about Sinamet and RLS. He also said we could try a narcotic such as Valium .
After some research, I found out that for 25% of the people, Sinamet caused augmentation of the RLS symptoms. The study said to try Mirapex, it did not have the same problem. It mentioned it could also cause augmentation but over a much longer period of time. I printed what I found and gave it to my neurologist. We both were reluctant in trying a narcotic and decided for mirapex.
The neurologist changed the prescription to Mirapex, one .5mg tab per day. It worked fine from year 2001 to year 2006.

Then gradually with Mirapex I was getting the same augmentation syndrome. my prescription was increased from .5 mg to 1 mg twice per day. This worked ok from 2006 to 2010.

The last neurologist I consulted in 2009 asked me to try Gabapentin 600 mg three times daily. I tried and it did not work for me, RLS was bad at night. I went back to Mirapex and increased my prescription to three 1mg of Mirapex per day.

In 2010 I started having bad knee pain on my right knee requiring a total knee replacement. I was also retired on a small farm and 10 acres of woodland with a lot of physical including walking work to do. I asked my doctor if he could help me with the pain so I could be more physically active ( I had gained 50 Lb). He prescribed an opioid 15mg during the day, then I realized that when taking the opioid I did not have the RLS symptoms. I was also starting to uncover some of the bad side effects with Mirapex, it was like peeling an onion. So the doctor suggested that I drop Mirapex and stay with the opioid 15 mg per day. Because of the laws restricting opioid , I had to go get a new script every month take it to a pharmacy who would order it and go get it the same day they received it . My neurologist helped by increasing the prescription to two pills a day to give me a back up stock while I had to go through this Chinese Drill to get get my meds. Needless to say the pharmacist preferred my $250 per month mirapex prescription to the $6 per month for opioids.


I did good for RLS with the opioid from 2010 to 2013. When I moved to SC in August 2013, my new family doctor did not want to prescribe an opioid. So I went back to Mirapex. I restarted with .25 mg once a day and gradually had to increase to 3 tabs 1 mg .
Through a lot of searching on the internet I uncovered several bad side effects I had because of mirapex : listed in order of importance or severity

1. Augmentation. It’s like if you were given a pill for a migraine , you get immediate relief but also get increasingly more migraines and each migraine with worst pain. Need to take more pills: drug manufacturers more $$ and your pharmacist richer and may be your prescribing doctor a trip to Hawaï all expenses paid .
2. Sudden Day Time Sleep : I lost conscience and was taken to ER
five times . Two car accidents . Lost my driver license
3. Less than four hours of sleep per night
4. DiffIculty with focussing and short term memory : lost three jobs
5. Over eating : prior to Mirapex my weight had always been stable then I gained more than 100 lbs
6. Hallucinations : not knowing what is real and not
7. compulsive behaviours including gambling, sex such like addiction to ***** sites
8. Impulse buying , shopping
9. Shortness of breath
10. Oedema both legs
11. Tingling in my fingers at night
12. Night mares: waking up screaming, sleep walk


The first warning about possible side effects with Mirapex appeared on the RX sheet around 2005. It said possible compulsive behaviours like gambling. I just checked the recent RX sheet and it now includes several of the side effects listed above. The FDA are still saying it has not been proven yet despite all the evidence and are now trying to put the same controls they have over opioid on Kratom.

Pfizer increased their price for Mirapex to push users on its generic , pramepixole , and avoid lawsuits. A lawyer told me I would have to only have used Mirapex to stand a chance to get a judgement and suing the generic drug manufacturers would be very difficult and they may not have the money to pay for settlements.
Big Pharma’s lobbyists are busy inciting our elected officials to vote for laws controlling opioids because they are cheaper, a lot cheaper and a lot more effective than their expensive drugs.

I now take gabapentin 1200 mg per day with limited success, but most of the Pramipexole side effects are gone. I used Kratom for six months to help me ween out of Pramipexole . I stopped using Kratom because of a warning by the FDA about dangerous side effects with using Kratom . I don’t know where they get their information .... $$$$
We all know it only takes a little bit of opioid to control RLS , why can’t we get it ?

[badnights]

Hi Pleasuredeal
I read your post with dismay that yet another person has had their life destroyed by a combination of a dopamine agonist (e.g. pramipexole marketed as Mirapex; ropinirole/Requip) and the ignorance of doctors who know only enough about WED/RLS to be dangerous.

Thankfully the side effects are gone now that you've stopped. What are your plans for re-building your life, what shape will your new life take? Maybe it's too soon to think that way, but I encourage you to as soon as you're ready.

What specifically was the FDA warning about kratom? Was it any different than the possible side effects listed for any opioid? Depending on how you feel about the warning, it might be a good idea to keep taking kratom. It would keep your gabapentin dose lower, which can only be a good thing.
Gabapentin is absorbed erratically (you may have noticed that some days it is more effective than others, although that's hard to tell from normal fluctuations). Also it has to be taken at the same time(s) every day, otherwise mood disturbances can result. If you notice deepening depressions, talk to your doctor about the fastest/safest way to stop taking it (and a replacement for it to treat the WED/RLS).

I hope things go well for you from now on!

[Pleasuredeal]

Hi badnights,
I don’t trust the FDA because they are controlled by our elected officials who are controlled by the Bigpharma lobbyists.
About Kratom the FDA says it is dangerous , could cause a hearth attack , not to take it. Perhaps sometimes they say the thruth , who knows?
My last neurologist who by the way was informed by me of the many possible bad side effects from Pramipexole suggested that I look on British web sites for more honest information about Kratom and agreed cannot trust the FDA: they will protect the interests of Bigpharma but says they will not say a drug is safe if it is known not to be safe but may say it is not safe without knowing for sure. Or it would be like saying : it is not known to be safe.
I agree for gabapentin does not always work. I wish I could go back to low dosages of opioid which worked fine for me for four years and I had no urges to take more than my daily dose of 15 mg. Opioids are generic , effective and cheap compared to anything else Bigpharma is pushing on us. I had an Asian doctor who had no hesitations to prescribe an opioid for pain or RLS and said only America has these controls on opioids.
As far as rebuilding my life, it’s too late now. Even my own children don’t believe I did what I did because of a drug (pramipexole) . It helps to see that I am not alone but it is so frustrating to see that Bigpharma are getting away with all this.

[stjohnh]

I don’t trust the FDA because they are controlled by our elected officials who are controlled by the Bigpharma lobbyists.

Kratom is the ground leaf of a tree native to southeast Asia (Indonesia, Viet Nam, Thailand, etc.) The leaves have been chewed by natives for over 1000 years. Used to help relieve boredom and pain from low tech agricultural and assembly line type work. In spite of daily use for many years, there has been no clear medical problem from kratom used there.

[Pleasuredeal]

Thank you stjohnh for the info on Kratom. This is good news and bad news. If it is really effective for pain relief and RLS , BIGPHARMA will put a lot of pressure on the FDA to control it’s sale just like they do with opioids to protect the more expensive and less effective drugs sold by Bigpharma. They already started with what appears to be misinformation saying it COULD have some serious side effects like hearth attacks. If I don’t get better results from gabapentin I might go back to Kratom.

[badnights]

Probably a good idea to add kratom back in, since you took it for a while without problems. Take kratom plus some gabapentin, in order to keep the gabapentin dose lower. Ask about Horizant- it is a better med than gabapentin - it turns into gabapentin after it's been absorbed, so it gets around those issues that gabapentin has. It is more expensive, but you should have no trouble getting it prescribed - it's FDA approved for treatment of WED/RLS.

As far as rebuilding my life, it’s too late now. Even my own children don’t believe I did what I did because of a drug (pramipexole) .

It\s not too late. Your children may or may not grow the wisdom needed to see the truth, I sure hope they do one day. Look after yourself and try to pull your life together slowly, one small thing at a time. It's hard and the memories can ruin you, so put them in a part of your mind where you can look if you want to but there they stay otherwise.