I Think You Got Me Wrong...

Share how living with this disease can and does impact your relationships. How do you cope? What questions to you have?
HSJ1
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Joined: Tue Oct 29, 2013 11:10 pm

I Think You Got Me Wrong...

Postby HSJ1 » Wed Oct 30, 2013 11:12 pm

I'm a 45 yr old man that has had WED as long as I can remember. This disease has affected me in many ways. One such way is my outward expression and how the fatigue affects my energy level.

I have been described as antisocial, emotionless and a hard read. On the contrary, I am filled with emotion. I don't know why it doesn't show. When WED has worn me down I just "exist" and fail to communicate. It's not that I don't have anything to say. Like my emotions they just can't come out.

When I'm worn down I feel 2 seconds behind and have a wet blanket on my head wearing me down. I enjoy conversations yet I zone out while people are talking to me.

I try to explain this to my closest friends. I want to be a sparkling conversationalist and engage with others. WED robs me of this and people just seem to pass me by.

debbluebird
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Re: I Think You Got Me Wrong...

Postby debbluebird » Thu Oct 31, 2013 12:44 am

So sorry that you've had this experience with people. We all here totally understand what you are saying. My close friends listen to me, but I know don't really get it. It's not their fault, if you don't have the disease it's hard to comprehend.

ViewsAskew
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Re: I Think You Got Me Wrong...

Postby ViewsAskew » Thu Oct 31, 2013 3:06 am

HS - is the WED treated? Not that it would prevent all problems....it might help in some ways. It could, though trade one set of issues for another.

I do get flares and am fatigued at times. Mostly, though, I sleep relatively well. The medication causes other emotional changes, however. So, I've traded in my fatigued/anxious/tired personality for a sometimes angry/depressed/sad/annoyed/well-rested one. Either way, the "real" me isn't available most of the time. At least it's not all the time, so I guess, on the whole, it's better.

I've been thinking a lot about this lately. I honestly think all of us need more meds. And, believe me, I do NOT say that lightly. We know that WED causes screwed up brain chemistry. So, we take meds that change it - but they often change it in worse ways. The WED goes away, but other stuff changes, too. We need better testing of chemicals so that doctors can figure out how we're challenged. My guess is that anyone taking any of the drugs we take could benefit from some combo of anti depressants.
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.

cornelia

Re: I Think You Got Me Wrong...

Postby cornelia » Thu Oct 31, 2013 12:35 pm

I could have written your story myself. I can't have conversations with people because of extreme lack of energy. RLS has forced me to quit my job and I live with my husband like a recluse because of this illness. I haven't seen my family in years andI am grateful that email exists. I am sure I will never ever be able to see them in my life again, just not possible. I don't even have a mobile phone, no use for it in my life as I seldom leave my home.
Your story is sad and unfortunately there are many more patients who experience the same sort of life.

I am sure you that underneath you are a nice and friendly person; the RLS just changes you and it is hard for others to understand. The ones that do are your real friends.
Corrie

Polar Bear
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Re: I Think You Got Me Wrong...

Postby Polar Bear » Thu Oct 31, 2013 2:23 pm

You don't mention any medications - and although all of us would love to be able to treat our symptoms without drugs most of us find it impossible. When you speak of fatigue then you are not sleeping well either because of WED/RLS symptoms, or because of side effects of certain drugs.

I am 'fortunate' in that after being a sufferer of some 30 years I have in the past 7 years taken medication and in the more recent.. say... 3 years found a combo that sort of works. Takes care of my symptoms, more or less, but I sleep little.

Fatigue is part of my life what with lack of sleep and also fibromyalgia. I am unaware of any big personality change. That may be because I've been coping with WED for so long that I don't have a clue how to be other than I am or how I might differ from 35 years ago. My husband has only known me as a 24/7 sufferer with medication.
It is fortunate that after 2 or 3 really desperate and overwhelming years in my latter working life coping with only 2 or 3 hours sleep, I finally reached 60 and retired and for the past 4 years the clock is no longer my Master.

I don't always have the energy to do everything in the house as I used to, but I get by and it's sufficient, the place looks ok, and I am somewhat social.
Sometimes I have to make myself go somewhere when I'd be quite content to sit at home. I do this because folks will only take a refusal so many times.
Because of arthritis and fatigue I no longer go on the Walker's Club rambles but can still socialise and sometimes say that I'm feeling a bit spaced/removed - from exhaustion - and head home.

I agree that an antidepressant is very commonly used amongst WED sufferers. I avoided an AD for years and when my doc eventually convinced me I was so glad to have done it. After a month I would have kissed his feet !! with gratitude. It sometimes means a tweek in WED medications as an AD sometimes will aggravate WED, but not always.

Please give us further background information.
Views has asked you if your WED is treated. Are you on any medications.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

HSJ1
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Re: I Think You Got Me Wrong...

Postby HSJ1 » Thu Oct 31, 2013 6:29 pm

Thank you for the replies of understanding and support. After 39 years of suffering with WED I was diagnosed along with sleep apnea. The study showed that I stopped breathing every 30 seconds. I was given Mirapex and a Cpap. I started at .25mg in 2007 and now I take 1 mg. i just recently increased it from .5 due to its inability to control the pain.

I can tell the side effects of the mirapex. It makes me drowsy and introspective- some may call it being antisocial. I don't know what 8 hours of sleep per night is. The meds work most of the time if I take it before what I call the witching hour or the point of no return. Then, if it's too late I'm in the throes of waves of rls pain and taking more mirapex does not alleviate the pain.

With the lack of energy comes the tag of laziness. I start projects and sometimes don't finish them. I just sit and zone out. Perhaps a combination of the drug and sleep deprivation. I used to be a work horse. Now I feel like a slug.

I've stopped drinking booze because of how it aggravated the symptoms. People like to drink and socialize. If I go to a bar I drink pop or tea and end up a wallflower just people watching. When I feel good I can be funny and entertaining. But that is the exception not the rule.

I'm not married. Every one of my previous long term relationships ended in their lies and cheating - eventually dumping me. Either I'm very unlucky in love or this disease and it's meds rob me of the ability to sustain the concept of romance. My previous girlfriend told me I do not have a romantic bone in my body. Again, on the contrary, I am bursting with passion. It just doesn't channel out.

I've worked 7 years on a night shift. These were the loneliest years of my life. I worked alone in a big room. I went home in the morning and spent my free time alone. I slept alone. Repeat.

I couldn't fall asleep naturally in the afternoon. My dr gave me ambien and then ambien cr. I took these drugs every night that I was scheduled to work. This went on for years. The drugs would knock me out but for only 3 hours. It got to the point that I could not function taking these drugs everyday. I tried melatonin. It was gentler but still left a hangover.

In 2012 I went down into a nervous breakdown. I could no longer handle my life. I was physically, mentally, and emotionally decimated. I knew my gf was lying and cheating. I was experiencing tremendous stress at my job. The endless solitude brought ruminations. I would mouth entire conversations with myself and wouldn't even be aware of it. My job sent me on medical leave and group therapy. They suggested I try antidepressants. I tried a few but felt that those side effects weren't worth it. One made my rls go ballastic. Another had sexual side effects. Another made my ears ring loudly. I returned to work but the stressors were still there. The loneliness was still there. Everything that took me to the edge was still there. The only difference was that I learned some techniques to try to change my thinking. Due to other reasons I was set up to be terminated upon my return.

I lost my gf. I lost my job. I lost my car. I can't find work in my field.

I've recently started dating again. She has noticed and remarked about my quiet emotionless stoic hard to readness. I explained to her about WED, how it and the meds affect me. So far I think she understands. She witnessed me in bed in the throes of kicking and stomping. I have passed out at her place without my Cpap and she has seen the difference that alone makes. She knows about how all my other relationships have ended. I asked her to please tell me if she is ever interested in someone else to please just come out and say it. I can't take the lies and deceit anymore.

ViewsAskew
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Re: I Think You Got Me Wrong...

Postby ViewsAskew » Thu Oct 31, 2013 9:58 pm

Thanks for sharing your story. We rarely have happy stories here, unfortunately. I consider myself exceedingly lucky to have a loving partner, but it's not always been this way. I lost one marriage to WED, lost more than one job, and have had periods of unemployability, too. This disease is incredibly toxic to our lives at times.

Mirapex at this dose likely means you've augmented on it. Just my two cents....the best thing you might do is to stop the Mirapex completely. This will NOT be easy! The first few weeks mean increased symptoms and it's truly worse than anything you can imagine. BUT, it can reset things and make life tolerable. EeFall just went through this and the difference is amazing. Of course, he still has issues with his current meds. many of our meds can change our emotional responses and feelings. I personally think pramipexole may be causing you to be depressed - it does that to many of us. We seem flat, tired, unresponsive, unable to complete things. I cannot take this drug with any frequency without wanting to jump off a cliff but without the energy to go find one from which to jump!

To stop pramipexole if you've augmented, it always requires an opioid. There are several articles about it, but not many doctors understand this. Look for the a post by Moderator Badnights - her signature has a document that can help you help your doctor. However, since you have apnea, you need to be careful using any opioids. I believe it's particularly important if you have central apnea.

Has your ferritin level been tested recently? It needs to be at least 100. Recent research suggests that some people need it even higher. This could reduce the amount of medication you need, too.
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.

HSJ1
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Joined: Tue Oct 29, 2013 11:10 pm

Re: I Think You Got Me Wrong...

Postby HSJ1 » Thu Oct 31, 2013 11:24 pm

I understand that ferritin and B levels are often culprits. My labs always come back normal. My mother had WED. She was diagnosed in the late 70's/early 80's. I have had it since childhood. Even though mom was aware of her condition no one took my complaints seriously. I grew up thinking this was normal. I feel like I have missed out on so much that life has to offer.

Existing... Nothing but existing.

I honestly can not imagine going off of mirapex. My pain symptoms are so severe that I often contemplate gassing up the chainsaw and cutting off my legs.

ViewsAskew
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Re: I Think You Got Me Wrong...

Postby ViewsAskew » Thu Oct 31, 2013 11:48 pm

I can honestly tell you that it's worth it to stop the drug - it's likely making things MUCH worse. Really. But, don't just take it from me, many of us here have done it.

Per ferritin, you have to ask what the actual value is. The lab thinks anything above 15 or 20 is OK, but it's NOT OK for people with WED. So, you have to push them to tell you what it is.
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.

HSJ1
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Re: I Think You Got Me Wrong...

Postby HSJ1 » Fri Nov 01, 2013 11:58 am

According to my dr the max dosage of mirapex is 4mg/24 hrs. He assured me that I have a long way to go before there is a problem. I see a sleep doc from a well known hospital system and not an internal medicine physician.

I lived my entire life with this disease. Mirapex is like a Godsend. I still can't imagine life without it.

HSJ1
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Joined: Tue Oct 29, 2013 11:10 pm

Re: I Think You Got Me Wrong...

Postby HSJ1 » Fri Nov 01, 2013 1:29 pm

My last ferritin assay was 165.

Polar Bear
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Re: I Think You Got Me Wrong...

Postby Polar Bear » Fri Nov 01, 2013 5:21 pm

Ferritin at 165 is good.
Most of us never can hope to get there.
And I understand that there are sufferers whose 'normal' is actually higher than that.

Your dr says daily max of mirapex is 4mg. !!!!! Please someone quickly jump in if I am wrong here....
There was a time when the DA dosages were accepted to be ok at around 1.5mg for mirapex and 4mg of requip/ropinerole.
These have changed. And the max for requip is now around 1 - 1.5mg daily, and for mirapex it will be less.
This poses a difficulty for me because I've been on ropinerole for years at 4mg daily.

Please listen to ViewsAskew, she knows a lot about medications.
Look at the links in my signature, in the signature of Views, and also of badnights.

Eefall came off mirapex and he well describes that journey.
Some of us have managed it and some of us have tried many times without success. I tried twice, by myself. It definitely takes dr support and supporting alternative medication to come off mirapex.

When we are feeling depressed it is difficult to find the motivation needed to tackle coming off a DA.
And yet the DA is possibly contributing. Certainly the fact that symptoms and sleep and not good is bound to be a contributing factor.
I think your doctor would benefit from some of the information booklets published and available for print out on the WED main site, and in the links mentioned.

An excellent book is 'Clinical Management of Restless Legs Syndrome' second edition, available on Amazon and written by Lee, Buchfuhrer, Allen and Bening.
It is my bible, it goes with me to doc appointments, there are notes and post-its throughout it, highlights and scribbles. Always in pencil.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
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Re: I Think You Got Me Wrong...

Postby ViewsAskew » Fri Nov 01, 2013 9:45 pm

HSJ1 wrote:According to my dr the max dosage of mirapex is 4mg/24 hrs. He assured me that I have a long way to go before there is a problem. I see a sleep doc from a well known hospital system and not an internal medicine physician.

I lived my entire life with this disease. Mirapex is like a Godsend. I still can't imagine life without it.


Your doctor us behind the times, unfortunately. I honestly am not sure it was ever 4mg, that seems the dose it was for ropinerole. If I remember correctly, the max dose was 1.5 in the recent past. Now, however, as Polar Bear noted, there are new guidelines based on new research. Many doctors are NOT aware of this.

Here is a quote from a 2012 publication:

Both of these drugs should be started at their lowest dose (ropinirole at 0.25 mg and pramipexole at 0.125 mg) and increased if necessary every 5 to 7 days by their initial dose until symptoms are controlled. Although the FDAapproved, maximum doses for ropinirole and pramipexole are 4 mg and 0.75 mg, respectively; many physicians exceed this dose, especially when treating daytime symptoms that may require 1 or 2 additional doses per day. However, after 10 to 15 years of experience with these drugs, concerns regarding augmentation of RLS symptoms by these drugs
have made many RLS experts rethink the doses used to treat RLS, and even whether these drugs should be first-line drugs of choice for this disease. Due to concerns regarding augmentation of RLS, In the opinion of this author and several other RLS experts, the maximum doses of dopamine agonists should be much lower than the approved FDA doses (such as 0.25 mg for pramipexole and 1 mg for ropinirole). However, augmentation may occur even at the lowest doses of dopamine agonists."

So, the max dose of pramipexole was not 4 mg, according to this, rather 2.25. But, as noted above, because of what doctors know about augmentation, it is only .25 now per dose - at 3 doses a day, that is a max of .75.

This paper is located here: download/file.php?id=25.
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.

EeFall
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Re: I Think You Got Me Wrong...

Postby EeFall » Sat Nov 02, 2013 5:27 am

You are fortunate from my perspective. If you have had WED "as long as I can remember" and still have friends then you are doing better than me for sure. I lost all my friends years ago and new people who meet me form the same opinion about me that you express "antisocial, emotionless and a hard read". I, along with many with severe WED, suffer in silence. With meds that change my personality and lack of sleep when they don't work I am not a very cheery fellow to be around. Much of the loneliness though is because I purposely avoid others now because of am tired of being hurt. People can't hurt me if I stay away from them in the first place. My wife knows who I am though, she knew me before I became sick, and has stuck with me which is a blessing for sure.

HSJ1 wrote:I'm a 45 yr old man that has had WED as long as I can remember. This disease has affected me in many ways. One such way is my outward expression and how the fatigue affects my energy level.

I have been described as antisocial, emotionless and a hard read. On the contrary, I am filled with emotion. I don't know why it doesn't show. When WED has worn me down I just "exist" and fail to communicate. It's not that I don't have anything to say. Like my emotions they just can't come out.

When I'm worn down I feel 2 seconds behind and have a wet blanket on my head wearing me down. I enjoy conversations yet I zone out while people are talking to me.

I try to explain this to my closest friends. I want to be a sparkling conversationalist and engage with others. WED robs me of this and people just seem to pass me by.

EeFall
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Joined: Thu Jan 03, 2013 4:11 am
Location: USA

Re: I Think You Got Me Wrong...

Postby EeFall » Sat Nov 02, 2013 5:49 am

I just read the other posts! You have been riding the roller coaster like many of us with severe RLS and sleep apnea. It is a terrible experience as you know. As the others have mentioned you should try to get off Mirapex (Pramipexole). Several months ago I did get off of it by going to a doctor at Johns Hopkins in Baltimore. Probably the hardest thing I have ever done but at least now I can sleep again. I take only methadone and Lyrica now.

A dosage of 4 mg of Mirapex is horrendous! I took Mirapex for years at .125 mg, went up as high as .5 mg but eventually went down to .25 mg before I quit it completely. I was constantly augmenting for years until this doctor Earley at Johns Hopkins told me that once you augment on Mirapex you should never take it again. It really does a number on your brain. I feel so much better now and I am able to sleep. Maybe some day I will be able to make friends again, but I am just happy at the moment to be off pramipexole and able to sleep so I can work. I don't know where you live but if I were you I would try to find a good sleep doctor. My sleep doctor recommended Dr. Earley after my doctors had given up. I live on the west coast of the US and flew to see him in Baltimore using my own funds. I'm glad I did. I'm not saying you should do the same but if at all possible try to see a good sleep doctor or to get your doctor up to speed on WED as some have done on this board with their own doctors by feeding them information found here. Good luck.


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