pain as a symptom of RLS?

[collageartist52]

i have been able to overcoome 20 years of RLS and get off all my meds, with a combination of diet and lifestyle changes. however, i have developed a pattern of night-time pain which is severe, only relieved with movement, and has the same cyclical pattern as my RLS did,

IE i wake up in pain about 2 hours after going to bed. i pace, or get an ice pack, toss and turn, doze and reawaken, about every hour or 90 minutes, until about 4 am, and then i sleep well until about 6:30.

has anyone else experienced this?

i did try, one night, a half-tab of my usual dose of mirapex and i had a better night than usual..but for me mirapex and gabapenten are simply not going down my throat as the answer.

what are the current best choices of you folks out there for a pharma treatment?

as most of you know, our drs really have no idea what to offer us, or the depth of despair and pain we are going thru.

thanks for any help!

j

[Madlegs1]

That's a tricky one! How do you define pain? Stabbing, aching, thickly or what?

The fact it is eased by mirapex would tend to confirm RLS.

If that is the case, and you don't want gabapentin, (for what reason?) you could try Pregabalin. It works in a similar way to Gabapentin, but is more expensive.

Another option is to try Paracetamol at night and see if that has any effect.

Otherwise I presume you have gone through all the protocols usually advised by Sue Johnson on this site. Iron levels and avoiding triggers.

That's my tuppence worth!🥴😎

[collageartist52 in reply to Madlegs1]

thanks so much for your insights..my big problem with gabapenten was that up to 900mg did nothing, but at that dose i did nothing but sit and stare into space... we don't need to reiterate why mirapex is hideous! i have yet to do iron levels. that is my next step...thanks!

[SueJohnson]

Sounds like your RLS is back. As Madlegs1 mentioned You might want to try pregabalin. Although it and gabapentin are basically the same drug except you don't need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. And if it doesn't help you can come off it very slowly to avoid withdrawal effects. Since it won't take long to find out if it still has the side effects you can't stand, it shouldn't take you as long to come off it. The other option is a low dose opioid if pregabalin doesn't work. Some people find that taking magnesium eliminates their symptoms although I don't know whether this works for the pain that is sometimes associated with RLS. Also have you had your ferritin checked? Improving it to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not, when you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning when your ferritin is highest. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 and your transferrin saturation to be between 20 and 45. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice.

[collageartist52 in reply to SueJohnson]

sue, i totally appreciate your reply...i will print out and take to my dr whose answer is: i can't do anything until i know it is RLS and so you will have to have a sleep study...meanwhile, i have had RLS since the late 70's...but he is my new primary care, and has to follow standard of care...from his perspective, i am some nutjob wanting meds. i can hardly wait to ask for a ferritin level etc...☹️

[SueJohnson in reply to collageartist52]

I see that the problem was not side effects on gabapentin but just that it didn't work. 900 mg is a low dose of gabapentin, so it is not surprising that it didn't help you. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." Once you get your doctor to agree you are suffering from RLS and s/he agrees to give you gabapentin: the starting dose is 300 mg. It take 3 weeks to be fully effective. After that ask your doctor for 100 mg capsules and increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. If you take magnesium, take it at least 3 hours before gabapentin as it interferes with the absorption of gabapentin. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it at Https://mayoclinicproceedings.org/a...

[collageartist52 in reply to SueJohnson]

very helpful to know about the magnesium interfering with absorption, sue. as for the gabapenten, at a dose higher than 600mg taken 2 hours before bed, i was still too drugged to do anything until about 4:30pm the next day. i have an elderly husband with multiple health issues and i can't afford to be drugged..so that is certainly a complicating factor for me. i would love a sound sleep, but with the ability to awaken if i was being called, for sure.

[SueJohnson in reply to collageartist52]

You might discuss taking Modafinil to counteract the daytime sedation with your doctor. Several people on the forum have mentioned that it worked for them.

[Butterflysun1 in reply to collageartist52]

that’s a pain for you and very frustrating! As you know almost everyone who has RLS just knows they have it, especially once the criteria are described. No one has to tell you. It’s just obvious! I do not fancy having a sleep study as I wonder how I’d manage in a confined room all night while wriggling about. It would be an awake study not a sleep study! I hope you can avoid the need. I always worry too about being viewed as ‘some nutjob wanting meds’! Recently the raised eyebrows when suggesting maybe IV iron might help were bad enough. I have no idea why no one ‘gets’ this condition - well some do but they are fairly rare. Good luck.

[collageartist52 in reply to Butterflysun1]

yep...and it's really sad that mirapex turned out to be so awful in the end, because for the first 10 years or so it was like a miracle for me...then augmentation hit me...

[Joe2528 in reply to SueJohnson]

I had a lot of success with kratom and it did work. Only problem is like everything else the longer you use it the less effective it becomes and addictive. It’s a never ending cycle that I’m sick of. I also tried suboxine and that worked too. Again. It’s terrible for you but your out of pain. Pick your poison.

[collageartist52 in reply to Joe2528]

My heart goes out to you...i do know exactly how you feel..how we all feel...a person who does not have this cannot imagine what it is like to have so little sleep and no way to escape this body...i find myself, a dozen times a day, that i am literally clenching my teeth against my body and exhaustion

[Nikos64]

YES! That’s exactly how I experience RLS most of the time. For me it’s a combination of restlessness and stabbing pain. Nothing seems to relieve it. Unfortunately, based on what I’ve learned so far the best way to treat this kind of RLS is with opioids. In my case I take a low dose of Tramadol.

But I urge you to use those as agents of last resort. Sue Johnson provides excellent advice and as an RLS sufferer I agree with her comments. Gabapentin and pregabalin in high doses may be helpful. In my case pregabalin at 300mg was helpful but the side effects were pretty intense. Excessive sleepiness and bad weight game. But everyone is different.

Best luck, hang in there, there are effective treatments.

nikos

[collageartist52 in reply to Nikos64]

I am sorry that i did not see your supportive reply until now...thank you...i am giving the lyrica a try..it is pregabalin...although a few websites say it does not work for folks who were on mirapex for a long time..one step at a time, right?

[Butterflysun1]

might you have developed a neuropathy as well? Maybe worth asking to be checked ( and the cause if so ). I had familial RLS which wasn’t painful. Then I developed a neuropathy & it became painful but only in the same time pattern as RLS ie numb daytime, painful at night & the pain has the same effect as RLS with the need to move, except sometimes the pain becomes a glowing, sort of burning sensation & when like that it doesn’t have the addition of the need to move.

[collageartist52 in reply to Butterflysun1]

no neuropathy, movement always helps...but who wants to get up every 90 minutes and pace for 10 minutes...the other thing that helps a lot is a cold clay pack to my low back...i use a long scarf to tie it on so that i can lie on my side.

[collageartist52]

Dismaying as all this is, it is nice to know that #1 i am not the only one with this crazy pattern. #2 i am not crazy. I am a yoga therapist and one would think between us, if there was an answer, we would have it, eh?

[Joe2528 in reply to collageartist52]

Same identical pattern for almost 20 years.

[collageartist52 in reply to Joe2528]

Here is a link to an article about rls and back pain. I intend to take this up with my dr. Maybe it will help someone else here.

neurokc.com/sleep-article/r...

[Truthsword]

I use 800 mg Advil prophilactically. My dentist gave me a prescription once. So now i just take 4 x 200mg OTC Advill. Yes pain has been a big part if the problem...painful RLS...all down one side or the other. Sometimes i need a "chip" of Tramadol too. Mostly not, unless i cheat on my low glutamine diet . Then i beed more ....dont take it all at once, though

[collageartist52 in reply to Truthsword]

Thanks for that tip. I will try it. When you say not all at once...could you give me an example of timing? This sounds so promising to be, because i can't really take a narcotic and be zoned out. My husband is older and sometimes needs help..

[Truthsword in reply to collageartist52]

Guess you could try 2 and see how that works until 800mg....no more. It can raise blood pressure...snd us gard on stomach. I take graham crackers and milk with it.

[collageartist52 in reply to Truthsword]

Do you take it once a day at bedtime?

[Truthsword]

In the evening with dinner. That amount usually lasts 6 hours.

[Truthsword in reply to Truthsword]

The point is to keep ahead of the pain.

[collageartist52]

so appreciate it! I will let you know how it goes for sure..

[Jelbea]

Advil is not a drug to take repeatedly and 800 mg is a high dose. This can cause bleeding from the stomach and can cause stomach ulceration. Be careful as I see you are caring for your infirm husband and obviously need to stay as well as possible.

Sleep for me is also very difficult so I know of your suffering. Good Wishes

[collageartist52]

i appreciate you sincere concern! Who could have imagined that one would value sleep beyond anything else in the world, eh? I will be cautious!