New to RLS and Struggling BAD!!! - Restless Legs Syn...

Restless Legs Syndrome

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New to RLS and Struggling BAD!!!

Trikkinoy
Trikkinoy

Hi I am new to the group and am ready to cut my legs off. I was told I had RLS last March at 46 years old. I was originally put on requip low does of .5 and was doing the trick, but I am currently taking 4 to 5 of these at night and its just getting worse. I cannot sleep and my legs hurt so bad at night. I have to stand at night and during the day, but my sleep doctor would not give my anything to help me sleep or for the pain? I am taking so many supplements and about 4 to 5 Tylenol a day plus Ibuprofen every day. I feel like I am going crazy. I take a warm bath every night with Epson salt and put lavender all over me. I spray my bedroom with lavender and I sleep with soap in the bed. I was given Neupro patches today to try, but I don't feel hopeful... I just want to sleep I don't even care if i hurt during the day at this point. Any suggestions?

40 Replies
oldestnewest

Sorry to be brief. So many people find themselves in your situation because their doctors don't warn them. I get quite upset when I hear yet another victim.

ALL dopamine agonists (DAs) , i.e. pramipexole, ropinirole (Requip) and rotigotine (Neupro) cause a condition called "augmentation".

For some it can be years before it starts but it sounds like it's started with you quite quickly.

There are 2 things you say that make me think you have augmentation

1) You have had to increase the dose

2) It seems to be making symptoms worse.

Augmentation is where the DA, instead of relieving the RLS, it starts to make it worse.

Unfortunately, also common and also upsetting, doctors react to augmentation caused by a DA (e.g. requip) by either increasing the dose or switching to another DA (e.g. neupro).

RLS specialists now say that augmentation can only becrelived by reducing and preferably stopping any and all DAs.

I said brief, but this seems to be getting quite long now. A few bullet points

-there are alternatives to DAs for RLS you can switch to

- you need to inform your doctor about augmentation and the alternatives

- start the alternative before slowly reducing the requip, SLOWLY

Hopefully others will fill you in with more detail,. If not, I will tomorrow.

I don't think any of the other things you're doing will be of any help as long as you're suffering augmentation

Follow this link

sleepreviewmag.com/2015/02/...

Trikkinoy
Trikkinoy in reply to Manerva

Thank you so much and yes it’s getting earlier in the day and I can’t even sit through church. I’m going to see a pain management doc tomorrow and hoping for help. I need to sleep so bad and it’s affecting me so emotionally. I used my first patch today and have headache and really don’t feel that good. Ughhhh I hate this

Manerva
Manerva in reply to Trikkinoy

As I suggest look into the alternatives to DAs for your RLS.

The main ones are gabapentin or pregabalin. Some RLS experts advise an opiate, but it's difficult to get any doctor to prescribe an.opiate for RLS or for chronic pain.

Gabapentin/pregabalin are also used for pain relief, specifically, nerve pain.

I find this article on RLS treatment gives an overview of the options and their appropriateness, benefits and drawbacks.

uptodate.com/contents/treat...

I too feel like Manerva does, so angry with all the cases we read on here of people being prescribed a DA and then given dosage increases when it starts to wear off due to tolerance and augmentation. We end up educating the doctors about augmentation (well the ones that are receptive to information coming from the patient).

Manerva is excellent at giving advice on here, thank you Manerva for giving your time to all us RLS sufferers, I would just add that there is a 'pinned post' all about augmentation on the top right side of this page, I encourage you to click on that link and read everything in there.

And finally just to say that I did get some relief by switching from ropinirole to rotigotine (Neupro patch). Not saying it's the solution, but if it's a while before you can see your doctor and if the pain doctor doesn't prescribe gabapentin to pregabalin or for some reason they don't work for you or your body can't tolerate the side effects, the patch might provide relief (at least for a while).

I wish you good luck and don't forget there are usually always people here if you want to "let off steam".

Trikkinoy
Trikkinoy in reply to YodaDog

Thank you, I used my first Neupro patch last night 1mg. Did not sleep much so i am hoping it will be better tonight, but not hopeful. :( The pain management doc did prescribe be gabapentin 300mg to take tonight so praying I can sleep. We thinks my sciatica is being pinched on top of the RLS. My question is does the Neupro patch quite working too and does it make it worse at some point?

Joolsg
Joolsg in reply to Trikkinoy

Manerva has given excellent advice. You’re clearly augmenting on Ropinirole and so taking another DA is not a good idea. You will probably augment on that too and quite quickly. It’s just prolonging the agony.

It’s best to get off Ropinirole very, very slowly- 0.5mg every 2-3 weeks.

So many of us have gone through augmentation and withdrawal. You aren’t alone.

As Manerva advises- Gabapentin or pregabalin are better options and you can start them as you reduce the Ropinirole.

Sadly doctors and neurologists are not very knowledgeable on RLS and best treatment so we have to educate ourselves.

Trikkinoy
Trikkinoy in reply to Joolsg

I have not taking the requip since yesterday. I have been changed over to Neupro patches 1mg. Are you telling me this is going to fail too??? I was prescribed Gabapentin today 300mg at night. I am going to lose my mind. I need sleep and very worried cause I have a trip to Africa in June (16hr flight and then 8hr flight) I am ready to CUT my legs off. I am so sorry for everyone here going through this!!!! :( :(

Joolsg
Joolsg in reply to Trikkinoy

Sadly yes. The Neupro patch is also a dopamine agonist.

The experts ( all in USA) will not prescribe another DA once you’ve augmented.

You may be lucky and have months/ a year on the patch before you augment or you may have weeks.

I suggest you read all you can about augmentation and educate yourself on dopamine agonists. The doctors and neurologists are failing us badly.

Augmentation and withdrawal are hell on earth and I know exactly how you are feeling. All of us who have been through it know how tough it is.

As you’re off to Africa in June- you could decide to start the withdrawal now - 3 months should be enough time.

You would then be on Gabapentin alone by the time you travel.

Do also get your serum ferritin and serum iron checked and ensure ferritin is above 100 and iron above 60.

Trikkinoy
Trikkinoy in reply to Joolsg

well, this SUCKKSSS especially since I'm in Texas (USA) and they switched me from the requip to the Neupro patches as I sat in his office crying because I've had no sleep and my legs hurt so bad. We have been checking my iron levels and my ferritin has come up from 26 to 83, but symptoms are worse. Not having insurance is not helping cause i cannot find 1 doc that will cover all these issues. They want me to go to 15 different doctors to treat the different symptoms. I don't think ill make it another 3 months like this. I have been going through HELL for months as of now. How much Gabapentin do you use? I guess it would be in my best interest to not go up in dose on the patch. Doc gave me 1mg, 2mg and 4mg and told me to gradually go up in dose based on how i felt!!!!! SCREAM!!!!

YodaDog
YodaDog in reply to Trikkinoy

I take 900mg gabapentin a day/night, which also happens to be the generally acknowledged dosage that provides most RLS sufferers the desired relief (it can be prescribed at up to 2400mg per day as a very maximum level). Note that it can take up to about three weeks for it to fully take affect in your system, so if you think it's not working straight away don't give up on it.

Also some doctors say you need to quit the ropinirole/neupro patch/mirapex (all dopamine agonists) completely before going on gabapentin, whereas others say you should titrate gradually up to about 900mg before withdrawing off of the DAs (which makes more sense to me).

Don't be afraid to ask more questions or "let off steam".

Joolsg
Joolsg in reply to Trikkinoy

I use 25mg OxyContin and 100mg pregabalin. Dr Ondo is in Texas - he’s great but I realise you have a very different healthcare system over there.

I used tramadol every 4 hours during the worst of withdrawal and illegal cannabis.

Please do read all you can about augmentation and dopamine agonists. No doctor should be advising 4mg patches.

Trikkinoy
Trikkinoy in reply to Joolsg

Where is the doc in Texas? I live in the Dallas Area. I need to find a doc that has a handle on this ASAP.

Thank you!

Joolsg
Joolsg in reply to Trikkinoy

houstonmethodist.org/doctor...

He’s in Houston. If you could see him he would get you off Ropinirole safely and would be likely to put you on Methadone. It’s safe at low doses for RLS, highly effective and has the least risk of causing addiction/ abuse issues.

Joolsg
Joolsg in reply to Trikkinoy

I realise that’s about 250 miles away but he is one of the world’s top RLS experts.

Trikkinoy
Trikkinoy in reply to Joolsg

of course, but might be worth the drive if i cannot find someone local. Apparently, my doctor does not know what he is doing. Thank you!

As regards methadone, since California's Dr. B put me on it at the rate of 5 mg, twice daily, I have gone from 2-4 hours of sleep per night to a wonderful 8 hours.

In my case no one wants to prescribe anything...…………...it's getting very frustrating!!

Pippins2
Pippins2 in reply to Trikkinoy

Undee no circumstances up the dose of the patch ! The max dose for RLS is 3mg anyway not 4 but as you have augmentation it is best to use a strong painkiller to gradually decrease the patch until you are off it altogether x

Trikkinoy
Trikkinoy in reply to Pippins2

I’m definitely not, but I don’t think anyone will give me anything to help or it seems that way. :(

Forgot to ask you about your iron levels, the typical RLS triggers and existing meds:

Have you had your iron levels checked as there is a strong link between low body iron levels and RLS in many sufferers. Also there are quite a lot of other medications that can either trigger RLS or make it much worse - are you on any other meds? And finally there are a number of RLS triggers, the main culprits being caffeine, alcohol and nicotine (however, for some people a shot of caffeine actually helps calm their RL and enable them to get back to sleep - I think they're the minority though).

Trikkinoy
Trikkinoy in reply to YodaDog

Yes, originally my ferritin level was 26, but as of January of this year it was up to 83 so i could not understand why it was getting worse? I only drink water except for 1 cup of coffee in the morning. I do not smoke and i don't drink alcohol. I even recently started KETO hoping if i drop 20 pounds that it would get better. I actually think that is what brought my ferritin levels up, because before that it was only moving 1 point every few months. I HATE this and just want relief. The hard part is not having insurance and trying to get help without going broke. :(

If you want health insurance for all, paid for from general tax revenues, that is most strongly advocated by Bernie Sanders.

No Thanks!

It's okay if you prefer to remain uninsured. I'm glad it's a free country, too. Just be grateful you don't live in the UK, or Ireland, or France, or Germany, or Scandinavia, etc. where everybody has health coverage, whether they want it or not.

By the way, I'm not saying that you should vote for Mr. Sanders, just pointing out that there are candidates out there who are trying to remedy the situation of those who, like you, feel that "The hard part is not having insurance and trying to get help without going broke."

I hope you start having better luck with your RLS; we all appreciate what a scourge it can be to live with.

I don’t want to get into politics, but nothing is FREE and anyone stating that is free is not telling the truth. I am not interested at all in socialism. I would just like our healthcare like it was before Obama got into office. I don’t have healthcare because I work for a small company and we had to drop it when Obama got into office and I can not afford to pay for it. Since I work I don’t qualify for Obamacare's free ( lose term ) healthcare! If I could afford $1,500 month the coverage sucks and you are still paying out the butt for any treatment. Someone just needs to fix it or people like us (RLS victims) will never get help because we will be at the bottom of the needful pile. Sorry rant over - I have not slept in several days! 😑

Don't feel bad about ranting. I, like you, feel that "Someone just needs to fix it...".

Best wishes.

I was given pramipexole for RLS but found it gave me severe calf cramps,found it better to take 2 paracetomol half hour before bed,the 600mg inuprofen and 30/500 cocodamols didnt work either

Once you get the DAs straightened out with the excellent advice above - start at the beginning - why did you develop RLS. Some excellent reading here... hopkinsmedicine.org/neurolo...

I have been on Gabapentin for about 2yrs. and it is working great. Before that I was on an opiate. First from my primary for the RLS and than from my oncolgist for pain from fractures in the pelvic area. I decided I wanted off the opiate, but knew that the RLS would return. So my Primary put me on Gabapentin. It has been working great until I slipped a disc at L1-2, which is now causing RLS of a different nature. Nothing will control it unless I have surgery, and I am not a candidate for it. So I now live with getting up 1-2 times a night.

Please take to your dr. about switching over. Make it a point. You are your own advocate for your health. Be adamant about. Don't let him/her talk you out of it.

I have tried explaining things i see that help other people, but doc does not seem to want to listen so kinda stuck. :(

Read Minerva

Hey Trikkinoy, I have had RLS for several years and was taking Tylenol 3 which worked great but I had to stop because my work was giving me too many problems. Super difficult to give that up because I had no systems whatsoever. I now take three 600 mg of Gabepentin which does work but only with low dose of Meloxicam and I do not eat after six PM. If I do eat then it is a very small amount because my particular brand of RLS is tied to my diet, hope this helps and good luck.

Eitheror
Eitheror in reply to Blray35

Yep, same here.

Trikknoy, first off, some of those supplements might be making your RLS worse than it has to be. Melatonin (also 5htp) might be the worst - not sure if you're taking that one. That's because it raises serotonin levels. So do some of the B vitamins such as B6 and inositol. Then there are OTC medications such as antacids and antihistamines that can make your RLS go crazy along with antidepressants. Some people have reported that hormone replacement therapy worsens their RLS. I have one suggestion when it comes to iron and I think it is safe since you're working with a doctor. I advice taking two 25mg capsules of ferrous bisglycinate (my brand is called Gentle Iron bought on Amazon). I advice taking it on an empty stomach one hour before bed. There are a few of us that do this and get immediate relief - within one hour. My iron stores are great so I'm not even interested in raising my levels. That iron at night thing just works and here's the theory why. Supposedly we with RLS have no brain iron reserves. The non-RLS people do. So we have anemic brains, not really bodies. And we really, really rely on that free floating, unbound iron in the bloodstream, supposedly. Well that free floating iron in our blood drops at night - dramatically. Surprise, surprise, that's when most people get RLS. I feel that by taking a highly bio-available form of iron I am literally sneaking my brain some iron at night. It has never failed to stop the RLS. I can feel it dissipate in about an hour after taking it. Like I said, not everyone gets the same results. But there are enough of us on here who it does work for that it makes it worth a try. Not a cure obviously. Good luck.

Thank you. I am not taking any of the supplements you suggest except for Iron every night.

Eitheror
Eitheror in reply to Trikkinoy

Have you been taking iron at night already? I find that the regular, common, ferrous sulfate doesn't do the trick. Long story short I started out taking ferrous bisglycinate because of a sensitive stomach. It didn't work when I took it in the morning. I was ready to give up but then read on here to try at night before bed. Then one night I ran out of the bisglycinate and figured I'd rather have slow motility for a day or two and went to Walgreens and bought ferrous sulfate fully expecting it to work. It did not. I took a second one and eventually fell asleep. The next day I went to Whole Foods and bought the bisglycinate.

Trikkinoy
Trikkinoy in reply to Eitheror

I do take liquid iron with Vitamin C every night since March 2019. My ferritin levels have gone from 26 to 83 last checked.

Eitheror
Eitheror in reply to Trikkinoy

But it hasn't helped. Not sure how many mg of iron you're taking. There is a point of no return such that if your RLS is so severe the amount of iron you would need would be too great in any given night. This is true, I personally believe, for people on anti-depressants with RLS. That nightly iron will not provide them with the relief it provides me and a few others on here. I hope you find some type of relief soon!!!

Thanks I think my biggest problem right now is that I am in augmentation and need to find a doc to get me on the right meds and off this patch.

Good luck Trikkinoy i really hope your can find a doctor who KNOWS about RLS and how to treat it. Come and rant on here when ever you feel letting off steam, the members are good listeners

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