Going insane

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Going insane

Postby Newlydiagnosed331 » Tue Oct 16, 2012 2:25 pm

Hi everyone,
I wanted to share my story with all of you. Any feedback is also appreciated. I was diagnosed with RLS last week. I have been having non stop symptoms for the past 2 months. Coincidentally my lower back hurt very bad at the time so my family doctor thought it was a bulging disc. He put me on meds, sent me to physical therapy. The physical therapy worked wonders for my back. But, my leg numbing/burning was still there. The doctor ordered a lower lumbar MRI. That came back fine. The doctor then told me I should see a neurologist. I got an EMG which was very unpleasant. Thankfully no nerve or muscle disorders. But, the neuro doc seemed to know immediately what it was I had. He is going to take a lot of blood and also wants me to get an MRI of the thoracic spine and brain just to rule out MS. He doesn't think I have it. In my opinion it's to cover his butt. He started me on pramipexole (mirapex) last Friday. I am slowly working my way up in dosages. As of today I am taking 1 .25 mg pill in the AM and 1 .25 pill before bed. Starting tomorrow I will be taking 1 in the AM and 2 at bed. It helps sometimes. But, I know it's because I just began and we don't know what dose is best for me. It makes me sleepy, a little dizzy, nauseous at times, and break out into hot flashes. I'm willing to get used to all of that in order to have my sanity back. I work behind a desk all day and I literally get up and walk around 100 times a day. My legs burn so bad. It happens in my right arm at times too. Some nights when I'm trying to get to sleep I literally lay there and cry. I feel pathetic. I just want some relief in my life. I'm feeling very impatient at the moment... :(
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Re: Going insane

Postby Polar Bear » Tue Oct 16, 2012 5:28 pm

Welcome to the discussion board.
You say you have had RLS/WED non stop for the past 2 months. Was this when it started or have you had it for longer than that at a lesser degree.

With regard to the mirapex please don't automatically up your dosage, once you reach the dose that works for you, stay with that. Sleepiness usually passes as you get used to the medication, also taking it with food can reduce the nauseous feeling. Don't despair if the mirapex does not work, there are many avenues of medication. Unfortunately it can be a bit of trial and error until we get what works, and I hope that you have success with the mirapex.

One tablet in the morning and one in the evening may not be sufficient to cover your symptoms if they are 24/7 and perhaps slow release may help, or splitting your morning tablet into two, taking one half in the morning and the other half at lunchtime.

It is so awful when symptoms also happen during the day, I worked at a desk and eventually put a coffee table on top so that I could stand and work.

You are not pathetic, you have a disease which is not yet being fully treated. Come here to have a rant, we have all done it.
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Re: Going insane

Postby Newlydiagnosed331 » Tue Oct 16, 2012 6:13 pm

Thanks for the reply. Off and on my right leg would get to me while trying to sleep. But, nothing too serious. That I may have first noticed about 3 years ago. It definitely occurred when I was pregnant too which was 2 years ago. But, all of a sudden these past 2 months it's been non stop all day, every day with no relief.

The mirapex I'm using as instructed by the neurologist. The first 3 days he told me to take 1 pill before bed. The next 3 days it's 1 in the morning and 1 before bed. Then after that it will be 1 in the morning and 2 before bed. Then on 10/26 I am to call him to let him know how I'm doing, etc. So, I'm increasing it under his instruction. The side effects are SO much better today. I honestly think it's because I got a good nights sleep last night. The only side effect I really felt today was a little nausea and these crazy hot flashes. Yesterday it was so bad with the side effects. I was so drowsy I had to take a nap in my car during lunch time!! :lol: Keeping my fingers crossed that this medicine does work. I don't want to be a lab rat and have to try a bunch of different meds.

I am getting to the point where I need to get something to put on top of my desk. This is hellish.
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Re: Going insane

Postby Polar Bear » Tue Oct 16, 2012 9:21 pm

Just bear in mind try not to take more of a dosage than you need for symptom relief.
Hopefully the remainder of your side effects with settle.

I am taking the max dose of daily requip/ropinerole and so supplement with tramadol and/or codeine.
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Re: Going insane

Postby ViewsAskew » Tue Oct 16, 2012 9:28 pm

ND, does moving make it better? The most important diagnostic questions are:

1. Is it worse when at rest?
2. Is it worse at night (even if you have it all the time, RLS/WED is worse in the evening hours)?
3. Is it helped when you move, when you are busy, when you are solving complex problems?
4. Is there an uncomfortable, icky, nasty sensation that makes you crazy?

You have a sensation. To you it's burning and painful. But, what about the rest of the questions?

If you are nauseous on the dose now, it may get worse as you increase it. An alternative is to go more slowly or start with less and take more time to get used to it before increasing. Some docs feel going fast gets it over with more quickly; some docs think going slow makes it more tolerable. You can decide what you prefer.
Ann - Take what you need, leave the rest

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Re: Going insane

Postby Newlydiagnosed331 » Wed Oct 17, 2012 12:44 am

ViewsAskew wrote:ND, does moving make it better? The most important diagnostic questions are:

1. Is it worse when at rest?
2. Is it worse at night (even if you have it all the time, RLS/WED is worse in the evening hours)?
3. Is it helped when you move, when you are busy, when you are solving complex problems?
4. Is there an uncomfortable, icky, nasty sensation that makes you crazy?

You have a sensation. To you it's burning and painful. But, what about the rest of the questions?

If you are nauseous on the dose now, it may get worse as you increase it. An alternative is to go more slowly or start with less and take more time to get used to it before increasing. Some docs feel going fast gets it over with more quickly; some docs think going slow makes it more tolerable. You can decide what you prefer.



It is 100% worse at rest. Working being my desk, driving, lying in bed... It's not necessarily worse in the evening hours. It's bad during the day at work too. But, I think that's mainly because I work an 8 hour day.

It is helped when I move. Especially standing and walking. That takes it away completely.

The sensation of burning makes me INSANE. That's mostly what I feel.

The nausea was minimal today. I feel like I want to listen to the doctor right now. I work full time and have a 2 year old to take care of. I don't want to put too much medicine in my body at once and feel like crap.
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Re: Going insane

Postby ViewsAskew » Wed Oct 17, 2012 7:12 am

Sounds like a good plan. Just know that if it gets bad that you have options.
Ann - Take what you need, leave the rest

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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.
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Re: Going insane

Postby Newlydiagnosed331 » Wed Oct 17, 2012 12:32 pm

Thank you. I appreciate your feedback. Last night was pretty bad. My left leg was crazy. I broke down and took tramadol as well before bed. That got me to sleep. I increase my mirapex dose tomorrow. We'll see how that goes. So far at work I'm ok. But, I usually am for awhile in the morning. Such a frustrating thing...
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Re: Going insane

Postby badnights » Thu Oct 18, 2012 5:23 am

Hi Newly
Your symptoms do sound like RLS/WED. If you reach a point where it's effective and you're not up to the doctor's recommended dose, contact your doctor and ask if you can hold it there (since problems do ensue more frequently the more you take.) But I wonder if Mirapex is going to do the trick for you.

Your neuro sounds like he knows what he's doing as far as RLS/WED goes (not all do), so I assume he's checking your ferritin with the blood work, but please do yourself a huge favor and ask to make sure. Also ask for the results - not as "normal vs not-normal, but an actual number, which is nanograms per litre but that's not important, the number should be 50 and preferably 100 or more for people with WED, though 20 is normal for other people.

The reason ferritin is important, is that low ferritin is strongly linked to more-severe WED and to higher risk of augmentation. Ferritin is a protein that transports iron, and if it's low, that suggests that parts of your body might be low (like your brain, which is chronically low in iron for WED patients). There is some evidence that supplementing with oral iron can lessen symptom severity, and a recent report recommended that doctors avoid prescribing Mirapex and the other dopaminergic drugs to WED patients whose ferritin is <100. (Augmentation is a worsening of the symptoms in time between doses; an increase in severity, earlier time-of-day onset, spread to other body parts).

I take two 300mg tablets of ferrous sulfate daily (nightly) and if I skip, I notice it on the second day. My meds can handle the symptoms most of the time if I keep taking the iron.

Your best course of action right now is to educate yourself as much as possible on the disease, and treatment options. Also read about augmentation - it has been known to happen within days of beginning a drug (for me, 3 days on ropinirole), for other people years, and some people never augment. Reading people's experiences here will also help; some of the medication solutions being used by people who post on this board are not options that every neurologist or sleep specialist knows of. Don't ever think you're out of options!

start with the links in Polar bear and View's signatures
Beth
AUGMENTATION http://www.willis-ekbom.org/document.doc?id=2324
viewtopic.php?f=5&t=6532&p=61601#p61601
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Re: Going insane

Postby Dancing Donna » Thu Oct 18, 2012 7:02 pm

I hope it works out for you. Like they said above, sometimes the first med we try is not necessarily the right one, and I dare say that most of us who have been through the RLS ringer, have had to play with doses, and different meds. It is all trial and error and what works for one person does not necessarily work for the next just because it is approved for RLS. As an aside, never start taking iron without taking to your doctor. Iron overload can be very dangerus and serious, so always ask for a Ferritin level, which is different than a regular iron serum test for anemia. Ferritin is stored in your liver and skeletal system, so that test is needed to show how your body stores the iron. another very helpful web site is DR. Mark Buchfuhrer's http://www.rlshelp.org He is a medical advisor to the board at the RLSF (US), and the treatment page is golden, easy to navigate, and also see the list of "Drugs and foods to Avoid". YOu could be taking something over the counter that seems harmless, but it may not be. FYI. IT is a good list to memorize. Good luck!
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Re: Going insane

Postby Newlydiagnosed331 » Thu Oct 18, 2012 7:47 pm

Thank you all.

I am now currently taking .5 mgs. I cannot take it during the day though because it makes me so nauseous that I can't function. The neuro doc told me to take my full dose at night. Nervous about that though. My legs feel good for the most part. But, right now they just kind of feel heavy and strange. I don't have the urge to move them around though. Hard to explain. But, I have not taken a pill since 8 last night. Today is the day I alter the way I take it. I'm sure it's just wearing off.

The ferritin level was ordered. I will be getting blood work next week. My neurologist seems very knowledgeable. I'm happy about that. I was seeing this other neurologist that kept telling me my leg numbing was migraine related. I get menstrual migraines. And, coincidentally my right leg would go numb when sleeping every time I had my period. I think it was RLS this whole time. Obviously my symptoms are much worse now than the occasional right leg going numb/burning.

I will let you all know what my blood levels are. I wouldn't take anything without my doctor telling me. Don't worry.
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Re: Going insane

Postby wabbit » Wed Mar 27, 2013 4:56 pm

What other symptoms are you having? Jaw pain, pelvic pain, burning pelvic, burning throughout the body, facial pain, muscle and bone pain, tingling, numbness, creepy crawling feelings, sensitive to loud sounds, GERD, etc? List any type of symptoms of have. You might have Fibromyalgia, which incorporates all these symptoms, including WED. In regards to burning sensations in your feet, you might have neuropathy. In other words, you might have two conditions. Fibromyalgia (which incorporates WED and symptoms mentioned above); Fibromyalgia, WED, and neuropathy; or WED. Mirapex helps me with Fibromyalgia, burning sensations, WED, and all the symptoms above. I thought I was going crazy and so did 3 doctors until 8 others diagnosed me.
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