RLS behind knee caps New to forum

[Bbiluvflorida]

I just recently joined and would like to hear if anyone else experiences the RLS sensations behind your knee caps? All I hear from others that their issues are felt in their calves or thighs. My Dr has tried every RLS medication available and the only one that works is pramipexole. Unfortunately it has nearly ruined my life with the compulsive side effects of over eating, gambling and wanting to buy things.
I have had to increase the dosage of the pramipexole to 1.5 which makes the side effects worse. Is there any help out there? I’m desperate.

[stjohnh]

I just recently joined and would like to hear if anyone else experiences the RLS sensations behind your knee caps? All I hear from others that their issues are felt in their calves or thighs. My Dr has tried every RLS medication available and the only one that works is pramipexole. Unfortunately it has nearly ruined my life with the compulsive side effects of over eating, gambling and wanting to buy things.
I have had to increase the dosage of the pramipexole to 1.5 which makes the side effects worse. Is there any help out there? I’m desperate.

Welcome to the RLS forum, Sorry you have RLS but glad you found us. I haven't heard of RLS symptoms only occuring behind the knees, but variations are common. The fact that pramipexole helped reinforces the RLS diagnosis.

Unfortunately, you have almost certainly augmented. This is a situation in which increasing doses of the medicine makes RLS worse. Your dose of pramipexole is WAY to high for RLS (OK for parkinsons, but that is a different disease). You will have to get off the pramipexole completely before you can move forward with better treatment, which for you is likely to be opioids or IV Iron.

RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. This is the only treatment that gets at the basis for RLS (low brain iron). It has almost no side effects. The International Restless Legs Syndrome Study Group has elevated IV Iron treatment to first line therapy. This means that IV Iron is one of the first treatments doctors should try, not one of the last (as has been done for many years). If you can get your doc to prescribe IV Iron treatment, that is the way you should go. Unfortunately this is fairly new information and most docs, even those that frequently treat RLS, are not aware of it. Note that the blood test doctors usually do to check for low iron (ferritin test) only checks for low BLOOD iron, there is no test available for checking for low BRAIN iron. Oral iron usually doesn't provide a high enough blood level increase to help, folks need IV Iron infusions. Here is a link to the recommendations:
https://reader.elsevier.com/reader/sd/p ... 83A240A179

[Bbiluvflorida]

Thank you for taking the time to review my issue. I appreciate the suggestions and I will discuss with my dr. I agree that I have augmented. My dr did try codeine but not a strong dose. It did not work. Is there something that would work better. Quite honestly I don’t know if I can afford the iron infusion as I am on a Medicare advantage plan. Thank you again, Bbi

[Rustsmith]

Is there something that would work better.

The opioid that is frequently the first choice is methadone, which is very inexpensive. It is preferred because it has a mild effect on the dopamine receptors and is a 1/day medication due to its long half life. The normal starting dose of 5mg works for many and 10 mg for most of the rest.

If your doctor is scared of methadone, tramadol ER is another 1/day med. Tramadol is a Sch 4 med whereas most of the other opioids are Sch 2. This makes getting and refilling tramadol prescriptions much less complex. Tramadol has several limitations for RLS. First is that it is the only non-dopamine med that can cause augmentation but that doesn't happen often. Tramadol also has a number of side effects that can be an issue, but every person is different when it comes to side effects. Finally Tramadol is also an SNRI anti-depressant and this makes getting off of if more complicated than other opioids.

[badnights]

I get my WED/RLS sensations mostly in/near my joints. My knee sensations are kind of behind the upper part of the patella, somewhere in there - - the lowermost part of the thigh bone too... Anyway,as Holland said, variations are common, and the fact that pramipexole helped you suggests the diagnosis was correct.

Take everything he said seriously. Augmentation is no fun, and what's even worse is getting off the dopaminergic medication that caused the augmentation - but your symptoms will be much better once you've gotten thru that. So much better it will be like day and night, probably. Your only realistic route forward is to eliminate the pramipexole, and every dopamine-type medication that can cause augmentation. In the long term, you may be able to add one back in, at a very small dose (less than the maximum recommended for WED/RLS, which is already much less than the maximum recommended for Parkinsons); that would let you reduce your dose of opioid. (see Buchfuhrer 2012 for recommended maximums of dopaminergic meds for WED/RLS - there's a link to it in my signature)

Codeine has the lowest potency I think of all the opioids. It will not be effective for you while you are in an augmented state, and definitely not while you are withdrawing. It may be effective afterward, or may not. If you still have pills, save them for later; there may be a time when your normal dose of (whatever you're taking) is not enough and some codeine could used to manage those breakthrough symptoms. Meanwhile, taking them is like eating grass - useless.

Since WED/RLS is basically a disease of iron deficiency in the brain, you should try to move heaven and earth to get yourself an iron infusion, if you qualify for one according to the medical criteria in the 2018 guidelines (see my signature - the link leads to a page of links to useful papers, one of them is the 2018 expert consensus on how to treat WED/rLS with iron). Simply upping your iron can reduce symptoms dramatically. Unfortunately, you might not notice until you're not augmented anymore.

fyi if you had taken iron before taking any pramipexole, it might have been all you needed, and at the least, it probably would have delayed the onset of augmentation. That's how important iron is.

There are a slew of other opioids that would work - plus tramadol, as Steve mentioned; the trick is finding one that works best with your unique body to give you the least side effects, and finding a doctor who will prescribe them. You probably need them long term, but at the very least you should have them to deal with the worsened symptoms that are coming up when you stop the pramipexole; so maybe you can at least get a prescription for that period of time and take it from there. I use hydromorph contin, an extended-release version of hydromorphone. I've been taking it for 11 years and in that time my dose has actually decreased.

It will be important to have a good working relationship with your doctor. There are two papers he might want to know about - the iron guidelines and the opioid guidelines for WED/RLS. They are currently the first two papers listed on my signature-link page. It would be best if you printed them and gave them to him. Preferably, read them yourself first, at least the sections that deal with your situation, and highlight a few of the most important points.

[Bbiluvflorida]

Thank you for your in-depth information. I have a doctors appointment on Friday so I will discuss this with her.

[stjohnh]

Corrected link to Guidlines for Iron use in RLS

https://reader.elsevier.com/reader/sd/p ... 83A240A179

[JenniferL]

Hi! I just joined the forum today. I was diagnosed with RLS 4 months ago. What started with achy shins, quickly progressed to achy and painful legs. I too have RLS behind my knee caps, as well as at my joints. I also experience symptoms during the day, although not consistently and not as painful. I have however experienced RLS every night since it started 4 months ago.

My neurologist calls my case atypical. I think because I don't have an uncontrollable urge to move my legs, and I have some symptoms durning the day. I move them because it makes the pain go away, but it's not a uncontrollable movement. I also have periodic limb movement as well. My mother has RLS but it's not constant like mine.

My neurologist put me on .375 mg of mirapex. That didn't help at all. He then switched me to Gabapentin. I took 400mg for 2 1/2 weeks and that seemed to help somewhat, but not completely. He just upped my dose to 500mg. I've taken that for 3 nights so far. Each night I've been on the 500mg dose, I've woken up in the middle of the night to painful symptoms. I don't know why this should happen, because even at the 400mg dose, I was sleeping through the night. Why would taking a greater dose only by 100mg make me feel worse?

Last night I woke up to a pain in the palm of my left hand. It wasn't because it was asleep. I was actually sleeping on the opposite side. Then my palm and lower hand felt like a numb sensation. I say sensation because it wasn't numb, I could still feel it, maybe pins and needles is more accurate. I immediately got out of bed. I felt that sensation go down my wrist. When I shook it around it felt better, but it scared to death. I thought for sure that he must have my diagnoses wrong.

My GP did a complete blood workup and even xrayed my knees. The xray showed nothing abnormal and my blood work came back negative for any type of inflammation, normal vitamin D, 25-hydroxy levels, CK Total, etc). My neurologist just did a blood test for Ferritin and Iron, TIBC, % Sat. I will get those results back next week.

My question is, does the weird feeling in my hand sound like an RLS symptom? It is making me question whether or not this is RLS.


Thank you for your time.

Jennifer

[stjohnh]

Hi Jennifer. I'm glad you found us, but sorry you are having problems.

My first thought on reading your post is that you probably should get a second opinion about the RLS diagnosis. I say this partially because you say you don't have urge-to-move. But urge-to-move is a required symptom for the diagnosis of RLS. Additionally, the Mirapex, while has significant side effects, is VERY good (at least initially) at releiving RLS symptoms. There are some who say if Mirapex didn't help, then you don't have RLS. Also, your neurologist has tried several meds, and you are still having problems.

Anyway, it sounds like you have some form of peripheral neuropathy, but not RLS.

[JenniferL]

HI! Thank you for your feedback. Do you think that .375mg of Mirapex was just too low of a dose and maybe a higher does should of been tried before switching?

Jennifer

[Polar Bear]

The max recommended daily dose for Mirapex is .5mg. You are already taking .375mg and I'm not convinced that you should have to be going any closer to the max before getting any sort of benefit.

[stjohnh]

HI! Thank you for your feedback. Do you think that .375mg of Mirapex was just too low of a dose and maybe a higher does should of been tried before switching?

Jennifer

Jennifer, I agree with Betty. The 0,375mg of Mirapex is a high dose. The recommended starting dose is 0,125mg.

[JenniferL]

Thank you for reading my messages and providing me with the thoughtful feedback. I think I am now at the point where I will seek a second opinion on my doctor's RLS diagnosis. By coincidence, my doctor is the doctor that comes up as the RLS specialist in my area when I input my geographical information on the main RLS.org website. I will have to do some more research to find a doctor to provide a second opinion.

Thank you for your time.

Jennifer

[badnights]

I agree that the WED/RLS diagnosis is pretty shaky.