Who on here has both RLS/WED and PLMD?

RLS/WED occurs more frequently in certain populations, including people with end-stage renal disease, women during pregnancy, and people with iron deficiency. Also, RLS/WED in the elderly and children brings other challenges. Sharing your experiences may be extraordinarily helpful to others.
sleepdancer2
Posts: 158
Joined: Sun Jun 29, 2014 7:46 am

Re: Who on here has both RLS/WED and PLMD?

Postby sleepdancer2 » Sun Sep 06, 2015 9:38 am

Betty, have any of your doctors prescribed a TENS Unit for you for any of your pain issues? I had one prescribed for lower back pain but I use it before bedtime and it calms my legs. Have you tried this yet? It won't likely do much if you have augmentation, but if you are not having augmentation, it's worth a try. It doesn't work for everyone but has been a lifesaver for me. I understand about a poor quality of life. Hopefully the new doctor can get your legs under control so you can sleep better. Five years ago I wouldn't have bet a nickel on my chances of surviving this long. I was in utter misery and had been for a long time. Still have my issues (who doesn't) but I am not in perpetual misery. Even have a bit of a life. :) Here's hoping you can make some advances too.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

Betty/WV
Posts: 587
Joined: Mon Nov 29, 2004 11:11 pm
Location: West Virginia, Wild and Wonderful

Re: Who on here has both RLS/WED and PLMD?

Postby Betty/WV » Sun Sep 06, 2015 5:03 pm

I don't think I'm augmenting. No I haven't tried a TENS unit. I can ask my doctor about it. I have sort of given up. I stay home most of the time. And I used to be very active. Its always something new happening to me. This morning I took a shower and discovered a huge bruise on my stomach. About the size of a baseball, very dark. I take Plavic and a baby aspirin. I will have to call my cardiologist in the morning. Thanks for the encouraging words. BETTY/WV
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

ViewsAskew
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Re: Who on here has both RLS/WED and PLMD?

Postby ViewsAskew » Mon Sep 07, 2015 4:53 am

I feel so badly for everyone here who can't get to a good RLS/WED doctor. It's so hard to try and figure out on your own.

I hope this new neurologist works out better for you, Betty.
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.

Betty/WV
Posts: 587
Joined: Mon Nov 29, 2004 11:11 pm
Location: West Virginia, Wild and Wonderful

Re: Who on here has both RLS/WED and PLMD?

Postby Betty/WV » Mon Sep 07, 2015 8:21 am

Since 2004, this site has been my shoulder to cry on, friends that encourage me when I am so down that I feel ill never get up again. My source of information about this horrible disease. My place to go to when I have to vent. I am so thankful for you all. But ashamed that there are no people in my life that I can turn too. Thanks to all of you, I hope I can be an encouragement to someone in return...
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

Polar Bear
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Location: N. Ireland

Re: Who on here has both RLS/WED and PLMD?

Postby Polar Bear » Mon Sep 07, 2015 1:09 pm

Oh ... Betty W/V - Don't not be ashamed that there are no shoulders to lean on, no people to rely upon.
Why would you be ashamed of this. Perhaps because you are feeling low, such feelings come up a bit stronger than they should.

There are many people who have 'other people about' and may as well be on their own because of lack of empathy, sympathy, or just plain old kindness.
Understanding RLS is very difficult to explain. I remember reading a poem once which explained it pretty well and at that time thinking it could be used very usefully to give some sort of insight to non sufferers.
Perhaps I will have another look for it.

I am sorry that you are at present feeling like this.
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

debbluebird
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Joined: Mon May 21, 2012 3:27 pm

Re: Who on here has both RLS/WED and PLMD?

Postby debbluebird » Mon Sep 07, 2015 2:48 pm

I have felt like that too. Back when I was at my lowest, I ended most of my relationships. But it got better and I began to feel better and I opened up. I made new relationships and mended old ones.
This is a wonderful place.

badnights
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Location: Northwest Territories, Canada

Re: Who on here has both RLS/WED and PLMD?

Postby badnights » Tue Sep 08, 2015 5:16 am

Betty, that bruise doesn't sound good, should you call a nurse or someone and ask about it? I hate to think of you all depressed and alone there....

You were on an anti-depressant for a while, weren't you? Are you still on one? Remember the two conditions often go hand in hand, it's not always just WED causing the depression, so the depression doesn't necessarily go away when the WED backs off.

When you're in the midst of depression it can be hard to recall that it's only chemicals in your brain bringing you down, it's not anything integral to you yourself. You are still beautiful.

It sounds like this new neuro might be able to take care of you. I think you have only three things to deal with insofar as your WED goes - first, if your WED is not controlled, that has to be dealt with. Second, you're not sleeping. Third, you're depressed. That might be the most important one, because it might be causing insomnia.
if you can get that depression treated, by talk or pill or both, you will regain your sense of wonder and engage with the world again.

Love to you
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

veldon75
Posts: 43
Joined: Sun Sep 21, 2014 3:45 pm

Re: Who on here has both RLS/WED and PLMD?

Postby veldon75 » Sun Dec 27, 2015 4:08 pm

I have both, the PLMD is the worst, the only thing that helps is the Mirapex unfortunately. I have been really desperate and frustrated lately. I dont think I can stop it with having to go to work! and I'm augmenting its in my arms sometimes. Very depressing!! sometimes I dont want to go on, but maybe God has a purpose for us if we are still here I just keep praying for strength to go on. God bless!

badnights
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Location: Northwest Territories, Canada

Re: Who on here has both RLS/WED and PLMD?

Postby badnights » Fri Jan 01, 2016 11:51 pm

veldon
it's really hard to think straight when you're augmenting or suffering from severe WED. It makes things seem worse than they are.

Yes, to get off the Mirapex you should take time off work. There will probably be a few days when you're useless. Having to worry about work is another layer of stress. If you have sick leave, that would be the time to use it. But first, make a plan with your doctor for the withdrawal. Is he/she knowledgeable about augmented WED, or do you need to share information with him?
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice


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