RLS, Neuropathy and Flare Ups of lowe... - Restless Legs Syn...

Restless Legs Syndrome

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RLS, Neuropathy and Flare Ups of lower legs

NancyAshworth
NancyAshworth

Haven't been on here for awhile but still have issues and am told nothing more can be done. So, I just keep taking my meds I have learned that my Ropinirole and Gabapentin do really help more than I know. I experience restlessness in the evenings and sometimes I can sit still but other times it is impossible. Sometimes mainly in my arms I am unable to keep them still. It is very frustrating as I then can not concentrate or remember what I did later on. I have increased my Magnesium dose and was taking 1 in the morning and the other at supper time. Then I thought I will try to cut the 250mg in half and spread it out taking it in AM, Noon, Evening and bedtime. It seems to have made a difference only time will tell. I sometimes will get up and walk around the house since it is dark outside. Other times it is so out of control I just go to bed put my ear buds in and listen to some music that it soothing and finally go to sleep. People keep telling to use my machine for apnea and my legs probably would not bother me. But I don't like the machine last time was awake more than before as the mask wouldn't stay in place. My husband feels that there is something out there that should help me at first he thought I would get better but have told him there is no cure and won't get better just gets worse. I found out when I went to the foot doctor that I have arthritis bad in both of my feet which causes me pain and hard to walk, let alone hammer toes on both feet. I won't go out much in the evenings nor go for long rides in a car as I can't stay still I am all over so I stay at home. Gotta go all take care.

7 Replies
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Sorry for all your troubles.

If you are taking your magnesium within 2 hours of the Gabapentin, and even possibly the Ropinerol, then that will inhibit the effect of those medications.

Effectively mg binds with the meds and so stops them being as effective.

I would try that first.

Then maybe look at "augmentation" , if you've been on the Rop for a long time and have had to be increasing the dose to get relief.

All the best.

Hello Nancy. I would urge you to have a concerted effort with what I think is CPAP for your sleep apnoea. I appreciate that it probably is hard to get used to wearing a mask to sleep, but it may improve the sleep that you do manage to get and that can only be a good thing. Are you fitting the mask properly/ is it the right size?

You don't mention doses, but you do mention that the symptoms have spread to your arms. This could be an early sign of augmentation. If so it is due to the Ropinirole.

It may be that you could increase the Gabapentin and reduce the Ropinirole. Gabapentin is better at promoting sleep than Ropinirole. DAs like Ropinirole can cause sleep problems.

You also mention neuropathy, but no mention of the symptoms or the cause of it. If you do have nerve pain, Gabapentin can also help that.

If walking's painful, you could get one of those sit down exercise cycles. It's basically just pedals!

I had one once. you have to bolt it to the floor otherwise it takes you for an unexpected ride!

Try looking on those well known internet seller sites.

Sorry, you're right, there is no cure.

I not been on either as had good run but it’s back with vengeance I am so tired my arms lower legs soon as I lay down stand up it does i my legs but arms hands don’t till about 5 am every night I get couple hours if I lucky I have tried it all

Now it’s amitrptellene at night

Manerva
Manerva in reply to hudson48

Just a note, if you mean you're taking Amitriptyline, it is renowned for making RLS worse. If your RLS is not good at the moment, it's the Amitriptyline that's the problem.

If you are taking it to help you sleep, you might find a benzodiazepine helpful e.g. Clonazepam.

Hi Nancy, my hubs was being told to use a CPAP for his apnea and snoring but we found a solution that I hope will work for you and many others here:

I have GERD and so finally took my doctor's advice and put our bed up on 6-inch blocks at the head. First night? NO GERD and, big suprise, NO snoring attacks by my hubs!

I am in heaven since I am sleeping all through the night and husband is well-rested without the snoring and me pushing him over on his side.

I also went from rare rls to sudden severe rls about four months ago and from this forum I have learned alot and have the rls pretty much under control with many nights of no rls (one .25 mg ropinole and maybe one 100 mg gabapentin if I 'feel' it coming on).

After visiting the chiropractor yesterday, my lower back-nerve-to-foot definitely caused the right leg to experience rls and I took two tylenol codiene and one gabapentin.

Alot of experimenting with diet (no sugar, no gluten, carrot juice in morning ala rlscure.com and magnesium tablets and spray) have helped. Hang in there!

You need to see a Doctor who knows how to treat RLS. I have been seeing a neurologist for years and he has caused me more harm and increased my suffering. I found a Doctor who was recommened by another member on site. I will share some of what I have recently learned. Your RLS which may have been manageable at one time but you are in severe augmentation. You have no choice but to come off the ropinirole and you need a Doctor who will treat you with opioids to do so. After you are off the ropinirole the gabapentin should start to work again. The other key is to have your iron checked and there are two kinds of iron that work better for RLS. So you have some options, you certainly are not a lost cause. Where are you located? There are a number of these devoted physicians around the world and you should be able to find one. Another thing you might want to do is google requip and it side effects. Make sure you look for long term side effects. and look for conditions that are caused or linked to ropinirole . You will be horrified. If you have neuropathy, muscle cramps, heart issues including afib. any kind of compulsive behaviors, The list is endless. My Doctor says I may recover some of these areas but not all. But he has told me he will get me off of this drug and my restless legs will improve.. I am grateful for that. So if this is true for me then it must also be true for you.Pam

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