How long before I should worry about augmentation?...

Use this forum to discuss any issues associated with Augmentation
jerrymeadlucero
Posts: 16
Joined: Mon Apr 29, 2019 2:39 pm

How long before I should worry about augmentation?...

Postby jerrymeadlucero » Mon Apr 29, 2019 10:35 pm

I have been on 1 mg tablets nightly of ropinirole for over two weeks now. It seems to have helped some but not fully relieved my symptoms. With 1 mg of ropinirole and 600 mg of gabapentin the burning sensation in my legs is gone and they are less sensitive to touch but I still feel some muscle twitching, tightness and soreness. Unfortunately, the soreness and tightness in my muscles is there during the day as well and I am starting to take 300 mg of gabapentin during the day to deal with that.

What I am really looking for an answer too in this post is how quickly does ropinirole augmentation set in? Am I ok with sticking with this treatment for a few months at least to see if things improve? Am I risking augmentation by staying on ropinirole for say 3 to 4 months? I really need to get my life back to some semblance of normal. I need to start working again (Uber driver) haven't been able to for over 3 weeks because of this. I am supposed to travel out of state for a month from mid-June to mid-July for family matters and am fearing I need to cancel now. Plus my doctors (primary and neurologist) are reluctant to see me more than a few months apart so making quick changes to medications is hard.

Any guidance is very much appreciated!

Rustsmith
Moderator
Posts: 3816
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: How long before I should worry about augmentation?...

Postby Rustsmith » Tue Apr 30, 2019 2:35 am

The first question is whether you have RLS or neuropathy. Neuropathy involves painful feelings near the surface of the skin whereas RLS involves discomfort that is much deeper in the muscles or it can even feel like it is in the bone. RLS also usually involves sleep issues, as in a form of insomnia that does not respond to normal insomnia treatments, such as sleeping pills or improvements in sleep hygiene. This is why RLS is classified as a sleep disorder rather than a movement disorder, even though both are involved. It is the problems with sleep that originally drove most of us to seek out treatment, not the discomfort in our legs.

As for how long before augmentation occurs, that varies between individuals. There are a very small number who can augment in a matter of days. The normal time is on the order of months or years. Some people go without augmenting for more than 10 years. Did your doctors run blood tests to measure your ferritin levels before starting you on ropinirole or tell you to take an iron supplement? Having your ferritin above 50 and better yet over 100 will help extend the time until augmentation occurs.

As for muscle twitching, that is not part of RLS. RLS involves an uncomfortable sensation that can only be relieved by moving. The questions that need to be asked to diagnose RLS can be found at http://irlssg.org/diagnostic-criteria/. You need to answer Yes to each of the questions. If even a single question is answered by No, then you don't have RLS.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

stjohnh
Posts: 771
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: How long before I should worry about augmentation?...

Postby stjohnh » Tue Apr 30, 2019 3:54 am

Usually ropinirole works well and quickly for people with mild RLS. It can sometimes be used as a sort of diagnostic test, since nearly everybody with mild RLS gets good relief. The fact that you have only had slight relief suggests, as do your symptoms, that there is some other problem, not RLS. Check the link Steve sent and see how much of that description fits with your symptoms. RLS for most people starts gradually with mild symptoms slowly progressing over years. Symptoms can progress much quicker if precipitated by surgery, trauma, or iron deficiency.
Blessings,
Holland

jerrymeadlucero
Posts: 16
Joined: Mon Apr 29, 2019 2:39 pm

Re: How long before I should worry about augmentation?...

Postby jerrymeadlucero » Tue Apr 30, 2019 3:56 am

Rustsmith, thank you so much for your reply. I am really desperate and depressed and any info is really welcome right now.

To answer your questions, on ferritin levels, I took a blood test a week ago. I have not heard back from my neurologist yet. I am going to call tomorrow to see if they have the results.

On neuropathy, this whole thing started three weeks ago following an EMG nerve test as I am diabetic (though well controlled for now, 6.5 A1C). The test was purely precautionary and found no neuropathy. But for whatever reason, the test, particular the needles in my calves, set off what I am experiencing now. Though I am told that is impossible. Though some of the symptoms are on the surface like the burning sensation I was getting before starting the drugs, most of the pain, tightness, pulling is deep in the muscles.

On the diagnostic tool, yes, I can answer yes to every question but always on "partially" or "usually" side of the question. For example, walking partially relieves the symptoms and generally feels better than sitting but does not relieve the soreness in the muscles in particular. And the symptoms are worse at night but some persist through the day.

I realize that this is not really the right place in the forums for this, but since I have already relayed much of my symptoms and gone well beyond a discussion of augmentation, I will post here a detailed history I wrote up today to try to explain to people what I am experiencing. Please excuse me if I am breaking board etiquette rules by posting it here...

Since early adulthood, I would get terribly painful muscle spasms in my calf muscles. Like most people, this was usually at night and I would wake up suddenly with a knotted calf muscle. I am terribly afraid of them because the pain is so intense and they are such a shock when they wake me up. Luckily even though their frequency has increased over the years I rarely experienced them more than twice in a year. However, since at least my early 30’s (I am now 49) I have had extremely sensitive calves and they will become tight and threaten to spasm at even the lightest touch by someone other than myself. If I go for a massage I have to warn the masseuse not to touch me below the knee or above the ankle for fear of getting a muscle spasm. I have also noticed over the years, especially more recently little rippling feelings in my muscles, including the top of my thighs. I can actually see it ripple occasionally. And occasionally in the last 2 years or less I would feel like something is poking me in the leg on my calf or thigh. I would check for something on my clothes, maybe a biting insect, but nothing. All of this, despite my deep fear of muscle spasms, was really a minor annoyance as the actual spasms happened at most a couple of times a year and the rippling and other weird muscle feelings were easy to ignore.

On April 9th I went to a neurologist for an EMG nerve test. I have type 2 diabetes and have been having occasional annoying itching on the bottom of my foot once and awhile that wakes me up at night and often bothers me during the day, especially when I am driving. My doctor had some concern over possible diabetic neuropathy from diabetes hence the test. When the technician let me know he needed to insert needles in my muscles for the muscle portion of the EMG test I warned him about my sensitive calf muscles. I had no trouble with the needle in the other locations on my leg, but as I expected, when he inserted them in my calf and turned on the current my calf muscle immediately tensed up and threatened to spasm. I eventually had to ask him to end the test earlier than he wanted because it was bothering me so much. I have been living in hell ever since that day.

When I left the neurologists office my calves were tight. I had to walk around for about an hour trying to loosen them up before I felt I could drive home. On the drive, they were twitching and threatening to cramp. I assumed that day all I needed was time to recover from the test. I figured by the next day at the latest my legs would be back to normal. But I had troubling sleeping that night due to the twitching, tightness and fear of cramping in my calves. Was only able to sleep a few hours. Next day it was still there but I did my best to go on with my normal routine. I am an Uber driver and so the next night I went out to work but could only work a couple of hours as I kept having the twitching, cramping session and felt I needed to stop the car and stretch my legs. Walking and stretching my legs did improve the feeling for a while each time. The next few nights I kept having trouble sleeping, usually getting about 3 maybe 4 hours in the night but in half-hour segments as I kept waking up. This went on until by Sunday, 5 days after the EMG test which seemed to start it all, I couldn’t stand it anymore. I had so little sleep all week and the tightness, twitching and cramping feeling had moved up from my calves to the back of my thighs. I could no longer sit comfortably at all. Only slow walking provided relief. That night I went to the emergency room. They gave me a blood test but found my electrolytes, potassium, magnesium, all that stuff was OK and I wasn’t dehydrated. They gave me two days supply of the muscle relaxer Flexeril and sent me home. I still did not get much sleep and the drug was only mildly helpful at best. The next day Monday I contacted my primary care doctor. She started me on 1 mg of Ropinirole which I have been taking every night since. It has helped a bit perhaps but has not completely relieved my symptoms. The pain in my thighs soon became worse than the twitching and feeling of cramping in my calves. The backs and the insides of my thighs feel bruised and make it hard to sit down. The skin on the surface often feels like it is burning on both the thighs and the calves. I visited the neurologist again a week later and he increased my gabapentin nightly dosage from 300 mg to 600 mg (I had been taking the 300 mg of gabapentin for months already to try to relieve the foot itching phenomenon but it made no difference). He told me the EMG nerve test had nothing to do with it and I had restless leg syndrome. The 1 mg of Ropinirole and 600 mg of Gabapentin a night have helped, especially with some of the twitching in the muscles and the burning feeling. But the bruised feeling in the muscles on my thighs and the tightness in my calf and thigh muscles is still very much a problem.

In trying to figure out what could have caused all this outside the EMG nerve test I considered other changes I had recently made in my life. The only other significant change was two weeks prior to the nerve test my psychiatrist who I started seeing over mild depression and anxiety symptoms had prescribed for me 50 mg of trazodone at night and Bupropion XL 150 mg during the day. I thought perhaps they might be causing the problem so I stopped taking both. But that seemed to make no difference. The neurologists blames my problem on the Trazadone, but I stopped taking that weeks ago and I still have the symptoms. And everyone else I have spoken too (psychiatrist, several pharmacists) and everything I have read online indicate that Trazodone is not a trigger for RLS and can actually help. Regardless I am staying away from it given the neurologist recommendation.

At this point, it seems unlikely however that the trazodone or the bupropion (Wellbutrin) was the cause of my problems. The neurologists insists the EMG nerve test is also not to blame and is coincidental. So I don’t understand what caused all this, why it is persisting and why the medications I am taking for it (gabapentin and ropinirole) seem to be only mildly effective. The psychiatrist has also prescribed 15 mg temazepam tablets for sleep. They work wonders. I have had them for 6 days now but only used them twice as I am so fearful of the dependence/addiction issue. But the two nights I did I actually got 7 hours sleep!

My biggest question is still is this RLS or is this something else?

I know these symptoms match RLS…
Twitching, rolling feeling in the muscles
Feels better when I walk and move and stretch them, rather than when I am at rest
Worse at night

But these aspects do not seem to match RLS from what I read…
Tightness in the muscles that requires stretching to relieve
Cramping
Bruised sore feeling in the thigh muscles, almost like I have been punched in the leg
Soreness in the tendon area behind the knee
This sudden onset of symptoms that occured all at once and has not diminished for 3 weeks

I am desperate to know if this RLS or something else. Does RLS come on so suddenly like this? Is it this painful with the bruised, sore feeling as well as the tightness and the twitching in the muscles? Is this my life from now on?

badnights
Moderator
Posts: 5140
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: How long before I should worry about augmentation?...

Postby badnights » Thu May 02, 2019 1:58 pm

Based on your description here, I change my mind about the situations you describe in your other post -
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

badnights
Moderator
Posts: 5140
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: How long before I should worry about augmentation?...

Postby badnights » Thu May 02, 2019 2:03 pm

I have put my thoughts in your Topic in the Just Joined Forum.

It is easier to keep track of people's responses, and easier for other people to follow the story, if you keep everything in one place. But not essential.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

jerrymeadlucero
Posts: 16
Joined: Mon Apr 29, 2019 2:39 pm

Re: How long before I should worry about augmentation?...

Postby jerrymeadlucero » Fri May 03, 2019 3:57 am

Good point Beth! I will focus on my post in the "Just Joined" section moving forward I think. And apologies to all if I have been overdoing it with posts in multiple sections of the forums.

badnights
Moderator
Posts: 5140
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: How long before I should worry about augmentation?...

Postby badnights » Fri May 03, 2019 5:04 am

No apologies needed, lots of people do it. You are a bit complicated so I mentioned it. Anyway, we're a small community here, as far as bulletin boards go, so you'll have much the same audience in every Forum. I'll add more in the Just Joined soon.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

ViewsAskew
Moderator
Posts: 15549
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: How long before I should worry about augmentation?...

Postby ViewsAskew » Tue May 07, 2019 11:21 pm

jerrymeadlucero wrote:Good point Beth! I will focus on my post in the "Just Joined" section moving forward I think. And apologies to all if I have been overdoing it with posts in multiple sections of the forums.


As Beth said, no apologies needed. It is for your benefit, ultimately, as it ensure no one misses something and says something they wouldn't have said had they known, so that you get a better response and the help you need.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.


Return to “Augmentation”

Who is online

Users browsing this forum: No registered users and 0 guests