Restless Legs Syndrome (RLS) Discussion Board

This summer has been awful! The end of July I had a 7 hour back surgery and then another back surgery the end of August. I pushed too hard and we went camping the middle of September. It was nice then home and unpacking, I am a little OCD. My husband got to not feeling good, tested him and positive for covid, looked like a cold. He recovered quickly.I tested for the heck of it and Positive, for the next couple plus of weeks I was home, but have no recollection of anything, like a coma. Finally got a UTI and gave me the wrong medication, but it woke me up, My rattling on is to say ever since the end of all this I have a bad case of RLS. I haven't had any bad issues for a very long time. I take the meds, Mirapex, opioids and sleeping pills et all, but now I cant sit down for more than a min. Did the general anesthetics cause this and should I take more of the opioids, or try marijuana? I'm loosing my mind!

I read an article a few months ago about anesthesia and how it can impact memory (which may be the issue with the lack of recollection). Surgery often causes increased symptoms - many theories why, such as the blood loss.

Definitely talk to your RLS doctor and let the know about it.

With regard to the comment about trying sleeping pills. I tried just about every sleeping pill my doctor was willing to provide and none of them worked. Some made me very dopey and I'd say dangerously so, but my RLS fought through and won. I was having to be mobile to fight off my RLS symptoms while being doped up with sleeping meds. I bounced off doorframes/bumped into furniture. On one occasion while at the kitchen table I think I dropped off momentarily while standing, fell backwards and my head hit the front of the dishwasher. I was ok but the dishwasher still has a big dent. I think that RLS insomnia is different from 'ordinary insomnia' and does not respond as well to sleep aids.

Have you tried the hot water/cold water treatment for temporary relief. When the symptoms kick in I'd fill a bucket with water as cold as possible and splash it up to my knees. The icy coldness feels almost painful but that passes very quickly. Keep going and after about 15 minutes (for me) the RLS symptoms drift away and I can jump into bed and be at peace long enough to get to sleep. This only works of course, if it's the RLS symptoms that are keeping you awake and not the insomnia.

I too have heard of surgery causing a negative effect of our RLS symptoms.

Could there be a coincidence that you had surgery at the same time as your RLS got worse. Has your ferritin serum been checked recently. How long have you been taking Mirapex, what is your dosage, has it had to be increased.

Thanks for replying I take 5 mirapex .25 mg a day. I also take alprazlam, trilazapem, Norco, gabapentin, Bupropion and zolpidem. , After the surgery I have had Flexeral. So I am having a problem trying to increase something and can't figure it out. I try a combination of more hydrocodone and gabapentin, but it doesn't work, but I have trouble trying to stay awake. While I was in the hospital they threw about every pain medicine there is to relieve the pain. No I havent had my ferritin level checked, I know I did have to have blood during surgery.

The first thing that came to mind is your dosage of Mirapex 5 x .25mg daily is too high. Have you considered that you could be augmenting.
The max dose for treating RLS should be 0.5mg daily. See the Mayo Clinic link below regarding Mirapex/Pramipexole dosage.
https://www.mayoclinic.org/drugs-supple ... g-20065603

Whatever you are taking the Gabapentin for, it should hopefully help with RLS. However, it does not help everyone.
The Norco should be helping RLS symptoms but if you are augmenting the dosage may not be sufficient.
Antidepressants are known to have a negative affect on RLS and so your Bupropion may be doing your symptoms no favours. However, if an antidepressant is needed then it should be taken and any extra symptoms dealt with accordingly. Not easy when you are already struggling.

Mountain Woman wrote: ↑

Fri Oct 21, 2022 3:20 pm

I tested for the heck of it and Positive, for the next couple plus of weeks I was home, but have no recollection of anything, like a coma. Finally got a UTI and gave me the wrong medication, but it woke me up, My rattling on is to say ever since the end of all this I have a bad case of RLS.

My doc says that most of his RLS patients experience a significant worsening of RLS symptoms after a COVID infection. He's a specialist and treats many patients with severe RLS. Can't give any more details though because my RLS didn't change during or after COVID, so I didn't inquire any further.

Re your meds, the buproprion is fine, polar bear just forgot that it's the same things as Wellbutrin, the one AD that should never cause worsened WED/RLS.

Do you mean triazolam and alprazolam? Those are both triazolobenzodiazepines, you don't take them at the same time, do you? Do you take zolpidem at the same time as well? Are the benzos more for anxiety than for sleep?

Sounds like you have a number of things going on. First, covid-induced worsening per Frunobulax's doctor. Second (not in order) surgery-induced worsening (it's very common post-surgery). Third, you probably are augmented; most people I know of have augmented long before they get up to 5 x 0.25 pramipexole daily. The maximum recommended dose of pramipexole/Mirapex for WED/RLS is 0.25 mg, according to some specialists, or 0.5 according to others, so you're 2.5 to 5 times higher than the maximum that specialists recommend. The likelihood of augmentation increases with dose.

Augmentation is a worsening of the WED/RLS symptoms caused by dopamine-type medications (pramipexole/Mirapex, ropinirole/Requip, rotigotine/Neupro, and levo-carbidopa/Sinemet). Unfortunately, the best way to deal with advanced augmentation is to get off the dopamine med, and withdrawal involves even more worsening.

You should definitely be bringing this problem to your doctor. There is probably no effective route forward for you that doesn't involve getting off and staying off all dopamine-type medications. It will not be pleasant to get off the Mirapex, but it will be essential that you do. You may have to increase the gabapentin or switch to pregabalin/Lyrica, but likely that won't be enough. The hydrocodone may also have to be replaced with a more potent opioid (one without any added un-needed meds like the acetominophen in Norco).

You will probably need to educate your doctor about augmentation. If she/he knew about it, you wouldn't be on such a high dose of Mirapex. Probably you will need to provide him/her with educational materials on both augmentation and the role of iron in WED/RLS.

There are some useful brochures you can print off on the Foundation website. This one is excellent:
https://www.rls.org/file/member-publica ... tation.pdf
(even though it is addressed to the patient, it is still useful for the provider. )
Read & show your doc the "How is augmentation addressed" part of this one:
https://www.rls.org/file/member-publica ... 5-3-22.pdf
And third, read and show your doc this publication on Iron and WED/RLS
https://www.rls.org/file/member-publica ... n-2022.pdf

You need to be a member to access those publications. If you can't afford the membership, email them, they can probably help you out with a special "scholarship" membership. In other words, this information is going to be very important to your future health, so don't let anything stop you from getting it! I know you can do this!

Beth. I absolutely did forget the Bupropion is also Wellbrutin.
Thank you.