New here, just diagnosed but not sure it really is RLS...

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

New here, just diagnosed but not sure it really is RLS...

Postby jerrymeadlucero » Mon Apr 29, 2019 10:07 pm

A neurologist recently diagnosed me with restless leg syndrome for a problem that has developed with my legs over the past three weeks, but I have some doubts about his diagnose and his proposed treatment has had limited effect on ameliorating my symptoms. I am desperate to communicate with someone with a deeper knowledge of the disease than I.

After an EMG nerve test conducted on my legs three weeks ago (I am a type 2 diabetic though well controlled, 6.5 A1C and the test was done to look for signs of neuropathy, none were found) I have been suffering from tight muscles in the back of my legs from the calves up to through the back of my thighs. My calves twitch and feel ready to spasm. My thighs feel bruised and sore and also twitch. The symptoms are worse at night and prevent me from sleeping. At first I could not get more than 2 or 3 hours sleep a night. But the symptoms are there during the day as well, especially the bruised feeling in my thighs, just not as serve as at night. The bruised feeling on the back of my legs was so bad I could not sit comfortably. I spent most days and nights pacing around the house as slow walking offered the only relief. Though I feel a pain in the tendon area behind the knee when I am walking often. I am on 1 mg of ropinirole and 600 mg of gabapentin each night now which has reduced the symptoms at night by maybe 50%, but not eliminated them. It has definitely helped with the burning sensation I was getting all over the skin on the back of my legs at night. It has also made it easier to sit for longer periods during the day. The constant tightness in my muscles and the feeling that my calves could spasm at anytime has turned my life upside down. Driving has become difficult as it seems to aggravate the calves and I drive for a living. I have not been able to work for three weeks. The combination of ropinirole, gabapentin and a sleep medication has slightly improved my sleep but I am still only getting 5 hours most nights. I am living in hell at the moment, I am extremely depressed and I am really worried that this will be the rest of my life.

I know these symptoms match RLS…

* Twitching, rolling feeling in the muscles
* Burning sensation on the skin
* 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?

Also, has anyone ever heard of a EMG Nerve test causing RLS like this? It is the main antecedent event of all this for me.

badnights
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Re: New here, just diagnosed but not sure it really is RLS...

Postby badnights » Wed May 01, 2019 7:29 am

First off, nothing is forever, and you won't have to live in hell for the rest of your life.

Next: do you have WED/RLS? Your symptoms do not clearly indicate it, at least not as you have described them so far. You probably at least have some form of neuropathy, which causes the burning sensation, which the gabapentin would be helping. (Burning sensations are not typical of WED/RLS, and WED sensations are deep, not surficial).

The critical missing ingredient for a RLS/WED diagnosis seems to be an urge to move. Moving to relieve the pain is not the same as a compulsion to move that is undeniable. The urge to move must be present for WED/RLS to be diagnosed. In RLS/WED, there is sometimes no pain or other sensation, only an urge to move. Do you feel that urge to move, separate from the pain? What happens if you try to sit there (or lie there) and suffer through the pain? If you feel a growing urge to move that gets worse and worse and eventually overcomes you, then that's WED/RLS.

RLS/WED can start suddenly but in that case there is always a precipitating factor, so you're right to be looking for one. I have never heard of a nerve test causing these symptoms but I don't know anything about those- - so maybe. Did you start or stop any medications or supplements three weeks ago? Anti-histamines with diphenhydramine (Benadryl) are the most common culprit, but other medications will do it, too. Did you make a change to your diet, or other lifestyle habits?

I am concerned about your ropinirole dose. It is already the maximum dose recommended for WED/RLS. Did you start on a lower dose? If your neuro started you on 1 mg, he/she is behind the times and you should probably attempt to lower it (I'm not a doctor, so preferably talk to one first). High doses of dopamine-type meds like ropinirole, pramipexole and levo-carbidopa are associated with a worsening of RLS/WED known as augmentation (symptoms start sooner in the day, are more intense, spread to the arms). It is my personal impression that if you don't have RLS/WED but have a genetic predisposition to it, merely taking the dopamine-type meds can precipitate the disease. Then you're hooped.

Before taking those meds, you should have had your serum ferritin level tested, and other iron parameters in the blood. Low ferritin levels are correlated with a greater chance of augmentation from the dopamine-type medications. Not only that, if you do have WED/RLS, taking iron can relieve the symptoms, and for some people no other medication is needed. RLS/WED patients are typically advised to supplement with oral iron if their ferritin is below 100. The disease is actually caused by a deficiency of iron in parts of the brain, which can be reflected in blood levels of ferritin (different tissues in the body can be iron deficient while others are not).

So - if you don;t have an urge to move, you probably don't have WED/RLS. You should definitely be seeking the precipitating factor for whatever you have. You should get your iron parameters including ferritin checked and supplement to get ferritin over 100 if you're to continue taking ropinirole. You should not take ropinirole if you're not absolutely sure you need it for WED/RLS, and if you take it, you should start at the lowest possible dose (0.25 mg) and keep it low as long as possible. And finally, things are never as grim as they seem. There are always people ready to help you. And good things will happen.
Beth - Wishing you a restful sleep tonight
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ViewsAskew
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Re: New here, just diagnosed but not sure it really is RLS...

Postby ViewsAskew » Wed May 01, 2019 10:32 pm

Very thorough reply, Beth!

Jerry - how frustrating for you to be in this position. Let us know if you have questions after you read Beth's reply.
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.

badnights
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Re: New here, just diagnosed but not sure it really is RLS...

Postby badnights » Thu May 02, 2019 3:48 am

I looked into the matter of potential EMG test complications. Since EMG tests involve putting a needle into muscle, there is greater potential for damage than in the nerve conduction test, which uses electrodes on the surface of the skin. The two tests are often done at the same time. The EMG is usually well tolerated, but there is a small risk of nerve damage, as follows:
  • There have been a few cases of nerve damage after EMG exam of certain muscles in the thorax. I don't know if these are more likley to be reported because the consequence can be a collapsed lung. and
  • A nerve may be damaged by accident, although there is no record of this happening in a review the literature. Specifically, I will quote "It is feasible that an EMG needle may also injure a nerve by direct ... puncture during near-nerve stimulation or if a nerve travels near or through the muscle of interest. Although there are no reported cases of routine EMG needle-induced nerve trauma, there are reports of nerve trauma from other types of needles, including deliberate insertion of small needles into nerves in microneurography." From https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6123846/

So I would suggest you bring it up with your doctor and ask him to look into the possibility that some damage was caused during the EMG exam and how to mitigate it, if that is indeed what happened. In addition to the other things I mentioned (ferritin test, reducing or eliminating ropinirole if warranted).
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
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Re: New here, just diagnosed but not sure it really is RLS...

Postby jerrymeadlucero » Thu May 02, 2019 5:55 am

First off, thank you all for your very thoughtful and helpful replies! It means so much to get your insight as I feel like I am in a black hole of despair at the moment over this.

Beth (badnights) what a great through reply. Thank you. To answer your specific questions...

Ferritin level: I took a blood test for that a week ago. I called my neurologist about results yesterday but I guess he will give me those when I see him again on Monday. I am really anxious to find out those results as I know they are key to more clarity on whether I have RLS. Question on ferritin levels, I started taking an iron supplement a couple of days before that blood test in my panicked self-help attempt to fix what was going on. Would that skew the test results?

Ropinirole: I agree the ropinirole dosage seemed high. The ropinirole prescription was the first response of my primary care doctor after I contacted her following my Sunday night visit to the emergency room when this all started. I don't think she really understood how to prescribe ropinirole for my condition and just went with it as it was a quick easy answer over the phone to my desperate situation. It seemed to improve my symptoms a bit, but the first real improvement I saw was the combination of the ropinirole and a doubling to 600 mg (from 300 mg) of my gabapentin dosage. I have raised my concerns with the doasge of ropinirole with my primary care doctor since but she has not suggested a change or really responded to my questions about augmentation. The neurologist also had little to say about the ropinirole. I plan on bringing it up again on Monday.

Urge to Move: I find this one so hard to answer. I guess I feel the urge to move mainly because... A. I feel my calf muscles getting tight and I feel the need to stretch them, especially out of what I admit is probably an irrational level fear that they are going to cramp/spasm if I don't keep them lose. Or... B. The painful soreness on the backside of my thighs finally gets too much and I need to get up to relieve it. I am not having situation "A" all the time now but that is the one that really bothers me because of my deep fear of muscle cramps. Situation "A" was the primary problem initially when this all started after I left the neurologists following the EMG nerve test. It is why I requested a muscle relaxer when I went to the emergency room 5 days later when I kept feeling either tightness or twitching in my calf muscles that had spread up into the back of my thighs. In the past week situation "B" has become the bigger issue. On even the softest, cushiest recliner, the back of my thighs feel sore. I can stand sitting on them for different stretches of time depending on how sore they are feeling at that time, it varies. Sometimes I can stand it for hours. Sometimes no more than 5 minutes. But I wouldn't say I feel a compulsion to move, it just feels like sitting on a bruise which doesn't feel good and gets worse the longer I sit on them. The gabapentin can numb this pain considerably but not take it away. I guess there is also a situation "C" which is the part the makes sleeping hard. My calves are so sensitive right now they can not touch the mattress or each other without causing discomfort that forces me to move. For the last three weeks, my only solution has been to wear winter boots to bed that prevent my calves from touching the bed or each other. I know, I sound crazy, but it is the only thing that has worked for me, even after being on the meds. So is that what everyone here means by the urge to move?

EMG Nerve Test: My neurologists insist there is no way this is the cause. And I have found no evidence in my online research of such a thing ever occurring. Yes, most of the examples of an EMG nerve test going wrong have to do with the thorax and with the proximity to organs in that case. And if the needle from the test damaged a nerve, what are the chances of that happening to both legs at the same time. Seems highly imporabable to say the least. So I guess it is just a bizarre coincidence. My neurologist thinks the cause of the RLS is that I started taking Trazadone for mild depression and anxiety two weeks prior to when this all started. But I find that explanation also highly improbable. First of all, Trazadone is generally consider very RLS friendly. Lots of people on this bulletin board praise its use to help them sleep. Even more importantly, I stopped taking it over two weeks ago now and my symptoms have not improved. Trazadone should be completely out of your system within 48 hours.

General questions for all of you with much more experience with this disease. There are three things that are bothering me most right now as they most impact my life moving forward...

1. Obviously sleep deprivation is probably the biggest issue for all of us. My sleep has improved however during this almost month-long experience. In the first week or more I couldn't get more than 2 or 3 hours a night of very broken sleep, mainly because of that calf sensitivity issue and the soreness of my thighs. Now without any additional medicinal aid beyond the 600 mg of gabapentin and 1 mg of ropinirole I can get as much as 4-5 hours, though broken up into roughly half-hour chunks. I was prescribed a limited supply of 15 mg temazepam which I have used sparingly over the past week. With the temazepam I can get up to 6-7 hours with minimal waking. Is this the best I can expect? I know I can't use temazepam on a regular basis, do you all use other sleep aids that are less problematic?

2. I earned my living by driving. Driving is also my primary form of enjoyment and relaxation until now. Me not driving is like a fish not swimming. I have not been able to drive but for very short distances and times since this started. Is this my future? I can't tell you how devastating this would be for me. It would not be an exaggeration, as ridiculous and melodramatic as it may sound, to question whether I would want to continue if I can't drive anymore.

3. My other main enjoyment in life is hiking. Before all this started I frequently hiked as much as 6 miles a day at least once a week. I moved to California two years ago specifically for that purpose. Now I am afraid to go very far anywhere even though walking generally helps, my legs still feel bruised and sore, not exactly an enjoyable hike. And I fear a serious cramp leaving me stranded, unable to move out in the desert somewhere. Do I have to give up hiking as well?

Again, sorry if this all sounds over the top. I have friends with much more serious diseases like MS that could really cost them their lives and I hate myself for being so lost over what I am going through. But I just can't imagine life with minimal sleep, not being able to drive and not being able to hike. Please tell me this is not my future.

badnights
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Re: New here, just diagnosed but not sure it really is RLS...

Postby badnights » Thu May 02, 2019 6:48 am

Re taking the iron supplement for a few days before the test: Holland would know better, but I think yes, it could definitely skew the results. The iron-research doctors at Johns Hopkins told us that we should get ferritin tested in the morning after fasting all night to avoid the food we eat affecting the result. (Also if you have an infection, your ferritin level will be high even if your iron stores are low - i.e. it will be misleading.) And hey - be sure to get the actual concentration of ferritin, the number, not just "it's normal" because you want it to be at least 75 preferably 100 if you have RLS/WED, and "normal" people can get away with 20.

I don't think she really understood how to prescribe ropinirole for my condition and just went with it as it was a quick easy answer over the phone to my desperate situation.
That's the scariest darn thing about augmentation - it's such an unusual thing, doctors who aren't familiar with it can easily over-prescribe and cause unimaginable agony. If they had any idea what they were risking, they would never be so casually careless! They also have no idea, usually, of the devastating impact of WED/RLS - they imagine it as something trivial. But - RLS/WED might not even be your main problem (all the more reason to stop or reduce the ropinirole).

Because of how common ignorance of augmentation is, even among neurologists, you would do well to bring in one of the RLS Foundation publications in which the recommended starting dose of ropinirole is given as 0.25 mg and in which augmentation is described. It would cost you 25 or 35 $ to become a member to get access to it, unfortunately, but if you send me a p.m. (personal message on this board) maybe I Can hook you up with an extract from it. It's best if you print the information, highlight the relevant parts (not too much), and ask her what she thinks of it - e.g. look, I found some information from the RLS Foundation, can you tell me what you think of this? It says here that blah blah..... give her a moment to read it ... and it says here that blah blah etc.

As for your urge to move: I think situation A could be WED/RLS, B is probably neuropathy and C is probably neuropathy. I will try to find you some references in which the diagnostic criteria are described with examples but your symptoms are pretty complicated and you really need to see someone who knows the difference between various manifestations of WED and neuropathy.

Although (anecdotally only) Trazadone sometimes backfires, it is generally RLS/WED-friendly, and you're right about the 2 week - it's hard to see how it could be the problem.

If you are going to need a sleep aid, best not to use a benzodiazepene like temazepam - one of the Z-drugs would be better, they have a far shorter half-life, though they can have their own problems (Ambien, Lunesta, eszopiclone, ). Or medical marijuana (if you get the right strain), or increase the dose of gabapentin (caution it can cause suicial depression in susceptible people - I was one - and can be evilly hard to withdraw from - see recent posts by legsbestill). - If you are going to use a benzo, the best one for a person with WED/RLS is clonazepam- it seems to have some symptoms relieving properties for a small subset of patients, and also helps relieve anxiety which is common with RLS/WED.

If you do have WED/RLS you should be able to get better than 5 hrs sleep per night with the right treatment which could be as simple as gabapentin and iron. (Note - gabapentin rarely works for people who have augmented.) You might want to look into iron infusions, if it comes to that.

Most people with RLS/WED can drive no problem. Being a passenger on long trips is hard, especially in the afternoons and evenings.

If WED/RLS is your main problem, you should have no worries at all about hiking. Being acitve is beneficial. Some people say being over-active is no longer beneficial and starts to cause worsened symptoms but others of us think that only happens when you first change your level of activitiy - a sudden increase or decrease can trigger symptoms til your bidy gets used to it. Anyway, hiking and WED/RLS go together like hand and glove.

You are in no way over the top. You can't do anything you love anymore, and you can't even earn a living. That's serious, and it's no wonder you're devastated! But don't fall into the trap of thinking that today is your future. None of us can know our future, so focus on today and on what you're doing to help yourself. You've begun by educating yourself as much as possible, and you're pursuing every avenue that opens up before you. That's how you're going to retain control of your life. Arming yourself with information, as you're doing, is crucial.
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

badnights
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Re: New here, just diagnosed but not sure it really is RLS...

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

Based on your description in the Augmentation Forum topic you started, I think I have changed my mind about the situations you describe - the calf situation is clearly cramping, not RLS/WED. I have to consider that your being on ropinirole is dangerous. Have you not considered stopping it? It is not clear, from your posts, that it is doing any good at all, since you have always taken gabapentin as well.
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

jerrymeadlucero
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Re: New here, just diagnosed but not sure it really is RLS...

Postby jerrymeadlucero » Fri May 03, 2019 3:41 am

Beth, first I really want to thank you! You have gone above and beyond reading my posts and responding to my questions and concerns. I really owe you a debt. If by some odd chance we ever happen to meet I at least owe you a dinner or a drink or something, LOL! No seriously, your insights are invaluable. And your encouragement has made a great deal of difference as I navigate this situation. Today I drove twice for about a half hour each time and was able to sit through a 2 hour movie in a theater for the first time since this all started. Both activities were not pain-free but the pain was manageable (the Gabapentin helped). And both are things I feared I might not be able to do anymore. So it was good to feel a little normalcy. I just hope I can get a real nights sleep tonight. Last night was horrible. And I am now getting that cramping feeling in my arms, especially my left arm, in the soft muscle below the elbow (don’t know what you call it). That scares me.

On the ropinirole and discontinuing it, YES! I really hope to. I am raising that with my neurologist when I see him Monday. I know I can’t just stop taking it, especially at the 1 mg dosage I am on. But I am really hoping he says it's ok to wean me off of it.

On the cramping - I fear I don’t use my words carefully enough and my descriptions of things tend to be different than the way most people describe the same thing which leads me into trouble. Let me be clear that as tight as my muscles have gotten and as much as they felt to me like they were starting to spasm many times during all this, they never fully spasmed like the night spasms I have had in the past. I fear those so damn much that perhaps my fear of the pain is coloring my perception of what I feel. I know people with RLS refer to “pulling” sensations. Would any of you suggest “pulling” might be somewhat similar to feeling like a muscle is starting to cramp or spasm? Does that make sense? I also feel a lot of “twitching”. Little involuntary movements in my muscles. Not PLMD, where your whole leg jerks, no, more like a little quiver inside your muscle. I call it “twitching”. Again, it scares me as my brain interprets it as the possible start of a cramp. I also get what I call “rolling”, especially in the top side of my thigh muscle. That one you can actually watch happen and see the muscle moving. That one bothers me the least as it does not suggest to me a possible cramp is coming and feels odd but does not hurt like the “pulling” does. Does any of this make sense to any of you? Do these descriptions sound more like what you all experience with RLS?

The pain that is causing me the most trouble at the moment is the soreness on the back of my thighs. That is the part that makes sitting so damn painful. And is really interfering with driving for any length of time. Its like sitting on two big bruises. The gabapentin helps considerable but it does not take the pain away. It just allows me to ignore it longer. The twitching and “pulling” or feeling like cramping in my calves which initially forced me to stop driving for fear of getting into an accident has seemingly eased up with the medications, though not disappeared. I can kind of mind or matter that at its current level and trust that my leg is not actually going to cramp and run me off the road. But I can’t sit on those bruised legs for much more than a half hour making returning to work as a driver impossible for the time being.

badnights
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Re: New here, just diagnosed but not sure it really is RLS...

Postby badnights » Fri May 03, 2019 6:36 am

Jerry -
You've made a very careful analysis of your symptoms and then again of how you describe them. It would be very useful to you if you wrote down the key points you've made in describing the three different types of pain you feel, and have them at hand during your appointment. Your doctor needs to understand the subtleties of distinction among them.

I think I understand what you're describing re the fear of spasms. I am again curious about your calf situation. The very ambiguity of it, your inability to describe it well, smacks of WED/RLS, but is not definitive. You get up and move, yet you aren't sure what to attribute that to. Have you tried to sit still and override the fear? What happens then? Are you able to override it and keep sitting? Or do you explode? Time yourself (for the heck of it).

Deb (debbluebird) describes her synmptoms as spasms, so maybe you two have something in common there.

I still feel you've got a couple of things going on. If you have both neuropathy and WED, they can confuse each others' diagnosis.

The pain on the backs of your thighs that hurts more when sitting does not sound like RLS/WED. Does it hurt more lying down than sitting? Does it hurt more the more relaxed you get? Then it might be RLS/WED, if it was also accompanied by an urge to move, and happened more at night.

Oh, and I get the twitching thing too. Small bits of muscle in my legs chitter away for a while.

I sloppily and quickly copied parts of the text from a number of papers on differential diagnosis of WED/RLS, Because I was quick and sloppy there's a lot of duplication. But for what it's worth, I've made a PDF and attached it, since it was too long to put in a post.
Beth - Wishing you a restful sleep tonight
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leggo_my_legs
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Re: New here, just diagnosed but not sure it really is RLS...

Postby leggo_my_legs » Sat May 04, 2019 5:53 am

Hi, welcome! Gabapentin can cause muscle tightness, twitching, and soreness. I have tightness and twitching from gabapentin. Tightness is a side effect of gabapentin. I feel it mostly in my hamstrings. It's pretty severe, to the point where if I try to stretch them, they either don't stretch, or snap back to where they were. Gabapentin also caused me such tightness that I could barely use my quads. They were so tight I was jerky going down stairs. I'm slowly coming off it now. Twitching is a withdrawal symptom from gabapentin, which has a 5-7 hour half life. Gabapentin can cause some weird stuff. I am positive this is the cause in my case as I had a full neuro workup and it's getting better as I come down in dose. I was on 1800 (600 three times a day). Now I'm on 100 4x/day.

leggo_my_legs
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Re: New here, just diagnosed but not sure it really is RLS...

Postby leggo_my_legs » Sat May 04, 2019 6:04 am

The reason why gabapentin withdrawal causes twitching and spasms is because the neurotransmitter gaba is a nervous system calming agent. Our brains don't make as much gaba when we're on gabapentin, so this interferes with the delicate gaba/glutamate balance. Glutamate is an excitatory neurotransmitter, causing over-excitation of neurons when there isn't sufficient gaba supply to balance it out. Not a fun state of affairs. I'm sorry you're going through that! Me too.

jerrymeadlucero
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Re: New here, just diagnosed but not sure it really is RLS...

Postby jerrymeadlucero » Sat May 04, 2019 6:09 pm

Beth, you are truly amazing. Thank you so much for putting that document together for me. I have read through it once already and think I will probably need to read through it several more times to digest it all. I am going to mark it up and bring it with me to my neurologist visit on Monday. It does seem my situation is a-typical at best.

Leggo_my_legs, thank you for your insight on the Gabapentin. That is very disturbing and depressing information. The gabapentin was the one thing that seemed to be helping. It was not totally taking away the pain but was reducing it considerably and making it easier to function. I was actually going to request my doctor allow me to increase my dosage, but now I am really worried.

I HATE TO SAY THIS FOLKS BUT I AM REALLY IN CRISIS AT THE MOMENT! Last night was one of my worst yet, actually really my worst since this started almost a month ago now! First I was having some difficulty falling asleep. Not a big surprise I know. But I had taken 15 mg of Temazepam which had been working really well for me. The first time I took it, it knocked me out and I slept for over 7 hours straight. Best nights sleep I got this past month. I have used it sparingly, only taking it roughly every other night or so. But its effectiveness seems to be declining each time. Last night I couldn’t tell I had taken it at all, But I did finally fall asleep. Only to wake up 3 hours later. I lay there for probably a half hour trying to get back to sleep, when BOTH MY CALF MUSCLES SPASMED! These were full spasm/muscle cramps! Not just the threatening, pulling sensations I have been getting all month. Thank god I was able to massage them and stand up and easy them out rather quickly. The spasms did not hurt quite as bad as they normally do which I attribute to the gabapentin deadening my pain. But it has me really, really freaked out!!!!!! This is my big fear - real, full muscle spasms. I had almost gotten to the point where I had convinced myself that despite all the twitching, pulling and feeling like they were going to cramp that I was overreacting and they would not actually spasm. Now I know that they will go into full spasm. On top of that, I assume unrelated, I have been nauseous since breakfast yesterday. It's not totally unusual for me, but it can’t seem to shake the nausea which gets fairly intense in waves at times. It made it hard to eat all day. After working out the cramps last night I have spent the last 7 hours mostly pacing around trying to keep my muscles loose but they keep wanting to tighten and when I rest (sit, lay down) they start to twitch and give me trouble again. I was so desperate that I did something I know many of you will say is CRAZY. I took an extra 1 mg tablet of ropinirole this morning as well as an extra gabapentin 300 mg capsule. It has not seemed to help. My nausea got really bad, I got dizzy and light headed and I dry heaved several times. I imagine the extra ropinirole might have caused that. I am now fully convinced I need to get off the ropinirole as it is clearly not helping and I fear may be making things worse.

Any advice people can offer is welcome. Are my sudden cramps a sign that I am augmenting from the ropinirole? I really thought I was slowly getting better until last night. I drove several times for a half hour at a time this past week and got out of the house for a good part of the day several times. Now I had to miss my niece’s birthday today and I am just pacing around my living room. If I just stop taking the ropinirole am I going to really have serious withdrawal symptoms? I can’t get a hold of my neurologist until Monday, when I was going to request being weaned off, but I am now tempted to just stop taking it. I am really, really desperate.

jerrymeadlucero
Posts: 19
Joined: Mon Apr 29, 2019 2:39 pm

Re: New here, just diagnosed but not sure it really is RLS...

Postby jerrymeadlucero » Sat May 04, 2019 6:18 pm

I should add one more potentially relevant factor here. 10 days ago I restarted taking my Wellbutrin. Since my neurologist didn't see it as a problem (unlike the Trazadone which he blamed for my symptoms but which I have been off for weeks). And since I had read online several sources indicating Wellbutrin was not only RLS friendly but could actually help with RLS. I know some of you disagree strongly and think taking Wellbutrin for an RLS suffer is a really bad idea. I am thinking re-starting taking it might have been a big mistake.

Rustsmith
Moderator
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Location: Pueblo, Colorado

Re: New here, just diagnosed but not sure it really is RLS...

Postby Rustsmith » Sun May 05, 2019 1:03 am

I only have two comments for you. First, are you sure that you are adequately hydrated? If you are dehydrated, this can cause true muscle cramps and if you have been away more than usual and up walking more than normal, you may need more water than normal.

Second, another "treatment" that should help both loosen your muscles and maybe your RLS is to soak your legs in a VERY hot bath. The water should be as hot as you can stand. When I don't have a tub, I stand in the shower with my hands on the wall opposite the shower head, with my feet placed so that it stretches my calf muscles and so that the water hits the back of my legs. This isn't as effective as soaking, but it does provide an alternative to pacing.
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.

badnights
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Location: Northwest Territories, Canada

Re: New here, just diagnosed but not sure it really is RLS...

Postby badnights » Sun May 05, 2019 3:09 am

Oh Jerry
First, cramps are not WED/RLS. In addition to Steve's advice, you might start on a magnesium supplement. Mg can help with cramps if you're deficient, which a lot of us are.

Second, you haven't been on ropinirole a long time, many people have quit on their own, many others have successfully reduced on their own. If I were in your shoes, I would certainly try on my own. (Also, don't eat ropinirole like that. It hasn't helped yet, I bet it's not going to).

Next: the nausea might be a side effet of ropnirole.

And finally - - as I mentioned earlier (I think), one of the possbile side effects of gabapentin is disruption of mood, especially if it isn't taken at exactly the same time every day and under the same conditions with respect to when you ate last. /Disruption of mood can manifest as mood swings or depression or even suicidal ideation. Is this happening to you?

Since you might be thinking of stopping both of these, I would start with the ropinirole because it isn't doing anything for you and it might precipitate WED/RLS that is currently not present. Then you might want to try getting off the gabap for a bit to see if your cramping and twitching improves.There are other medications out there simlar to gabap that might not have the same side-effect profile in you. You could ask your doc to switch you, then see if the cramping and twitching is relieved. Or stop without switching, and see what happens. If the burning is unbearable but the cramping stops, you know you need a gabapentin relative, not gabapentin itself.
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.


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