What Severe RLS is Like

For everything and anything else not covered in the other RLS/WED sections.
EeFall
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Re: What Severe RLS is Like

Postby EeFall » Wed Oct 26, 2016 6:34 pm

ViewsAskew wrote:
Polar Bear wrote:I am 67 and will look forward to 70 with optimism :)


Indeed!


If I take less Suboxone then I go into withdrawals which mimic RLS so the only way to know for sure is to get off suboxone for at least a month and see what happens. It would involve not sleeping the entire time and pacing most of the time. Even now though suboxone doesn't always work so I must still have it.

I believe suboxone is messing with my nervous system as I am getting unexplainable jolts of pain all over including feet, hands legs, head, and it is getting worse but nothing else to take. I am also getting really angry about any little thing although I can hide it usually.

Can't believe I am still working. Memory is not too good either. As in it has been a month since I have returned here as it totally left my mind. Yikes.

stjohnh
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Re: What Severe RLS is Like

Postby stjohnh » Wed Oct 26, 2016 6:48 pm

EeFall wrote:
I believe suboxone is messing with my nervous system as I am getting unexplainable jolts of pain all over including feet, hands legs, head...


I have been wondering about something similar. For the last 2 months I have been having similar pains, seems like they're slowly getting worse. I take kratom, Mirapex, medical marijuana, and Gabapentin. I wonder if this is just another manifestation of RLS.
Blessings,
Holland

ViewsAskew
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Re: What Severe RLS is Like

Postby ViewsAskew » Thu Oct 27, 2016 1:04 am

I get some, too. They started when I was only taking pramipexole. They decreased after I stopped it and almost stopped, but not completely. Now that I use pramipexole occasionally, they are stronger again. Feet, legs, arms, and hands primarily. For me, they feel like what is described as neuropathy. Not sure that is what you both experience.
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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Location: USA

Re: What Severe RLS is Like

Postby EeFall » Thu Oct 27, 2016 9:36 am

ViewsAskew wrote:I get some, too. They started when I was only taking pramipexole. They decreased after I stopped it and almost stopped, but not completely. Now that I use pramipexole occasionally, they are stronger again. Feet, legs, arms, and hands primarily. For me, they feel like what is described as neuropathy. Not sure that is what you both experience.


Yes neuropathy. I also take Kratom once in awhile but I think it is from prolonged use of medications that mess with the brain to relieve RLS.

An example of recent experience I am sitting in living room in recliner perfectly comfortable watching something on the tube and out of no where the bottom of my right foot had a stabbing pain that seemed to pulse on and off like at every heartbeat. My wife was sitting there and I'm practically screaming holding my foot. After massaging it for 30 seconds or so it lessened until a few minutes later it was as if it never happened. Like an electrical short in the body, really weird but it seems to happen for no reason and different areas of body.

I've been taking drugs for RLS going on 17 years and it is no wonder to me this is happening as RLS is the brain misfiring someway, who knows exactly what the drugs are doing. Mirapex which I took for many years had all kinds of strange symptoms and I think it at least somehow has a few permanent repercussions but then I'm only guessing really. Also Suboxone was not meant to take permanently and I have taken it about 4 years now.

Of course there is no choice at all. I am just thankful I am still kicking and able to see my grandkids grow up :-)

EeFall
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Re: What Severe RLS is Like

Postby EeFall » Thu Oct 27, 2016 9:54 am

I woke up at 1 AM and that was the end of my sleep for the night lol. Got up and ate some breakfast and made coffee. So strange how the body ignores my medications like this once in awhile. I was thinking at least I am not pacing but it is now 2 hours since I got up and I have not sat down yet lol. I ate standing up and I'm writing standing while drinking coffee. It seems so natural now. The new normal, never thought I would get used to this but whatever.

I hope everyone is doing well.

legsbestill
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Location: Dublin Ireland

Re: What Severe RLS is Like

Postby legsbestill » Sat Oct 29, 2016 10:24 pm

Yes; that's exactly how it is for me since coming off mirapexin at the beginning of the Summer - the new normal. At first it was intolerable but (although I still hate, hate, hate it), the middle of the night has become 'my time', a place only I inhabit. Symptoms have improved a lot just recently to the extent that I often have repeated nights of being in bed for most of the night - sometimes even asleep, but when I am up it is almost like meeting an old friend again. I never thought I would get to that point.

debbluebird
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Re: What Severe RLS is Like

Postby debbluebird » Sun Oct 30, 2016 11:16 pm

I have had a new pain recently in the toes of my right foot. Sharp and intermittent. It lasted for a little while, then the PLM's started in that leg with the same muscle that it usually starts in. It's happened three or four times now. Mine must be associated with the PLMs. Weird

ViewsAskew
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Re: What Severe RLS is Like

Postby ViewsAskew » Mon Oct 31, 2016 7:12 am

Neuropathy almost always sets of RLS or PLMW for me.
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: What Severe RLS is Like

Postby EeFall » Tue Nov 08, 2016 8:08 pm

I just can't imagine working another 9 months and really need to work 12 months on top of that.

Polar Bear
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Re: What Severe RLS is Like

Postby Polar Bear » Wed Nov 09, 2016 1:43 pm

EeFall - I think I recall when you had years to work to retirement..... so far in front it could hardly be considered.
Now you are down to less than 2 years, perhaps 9 months. You have been stronger than you thought you could be.
Well done.
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

EeFall
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Location: USA

Re: What Severe RLS is Like

Postby EeFall » Wed Dec 14, 2016 6:05 pm

Polar Bear wrote:EeFall - I think I recall when you had years to work to retirement..... so far in front it could hardly be considered.
Now you are down to less than 2 years, perhaps 9 months. You have been stronger than you thought you could be.
Well done.


Thanks, I hadn't thought of the time that has gone by. As you can see it has been around 5 weeks since being on here, it is so weird how my memory goes. I am having diabetes symptoms now see the doc in a week - yikes.

Polar Bear
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Re: What Severe RLS is Like

Postby Polar Bear » Wed Dec 14, 2016 11:19 pm

EeFall, my husband is diabetic and manages to control with oral medication. It doesn't affect his lifestyle in any big way.
Good luck.
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: What Severe RLS is Like

Postby ViewsAskew » Thu Dec 15, 2016 6:06 pm

let us know what happens...
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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Joined: Thu Jan 03, 2013 4:11 am
Location: USA

Re: What Severe RLS is Like

Postby EeFall » Mon Jan 09, 2017 5:49 pm

ViewsAskew wrote:let us know what happens...

It is looking more like colon cancer but they don't know for sure. All I know is it doesn't matter what I eat now my lower gut is pretty much always hurting and cramps often. I suppose it could have something to do with my previous operations, actually I hope so as the alternative is of course terrible. I had a positive abnormal test for blood in colon and have not heard back yet on CT scan. Other things are going on too that they are looking into but trivial in comparison. RLS could indirectly caused it because of the terrible constipation from opioids I suppose. My wife and I spent Christmas holiday both with flu, awe togetherness lol

ViewsAskew
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Re: What Severe RLS is Like

Postby ViewsAskew » Mon Jan 09, 2017 9:58 pm

The flu, too? And both of you :-(. Waiting must be hard...
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.


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