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lassieluv
Regular Member


Date Joined Apr 2008
Total Posts : 254
   Posted 4/13/2008 5:08 AM (GMT -7)   
Is there anyone out that suffers with Restless Leg Syndrome?
 
I had a relatively tolerable day yesterday with the CP issue.  I was so thankful for this, I'm sure your prayers for me had a big part in it.  But when it got time to sleep all hell broke loose.  I have had RLS before but my Dr won't prescribe anything for this as he says I am on too many meds. Maybe it wasn't RLS I experienced.  This twitchy, tingling restlessness involved first my leges then went up my whole back.  It was almost like something had moved into my entire body.  I couldn't sit still; little spasms ran up & down my spine.  I couldn't walk around to try to ease this discomfort and my sleeping arrangent only lets me lie on my back.  I slept in cat naps and was so thankful to see the sun rise.  I am still a little twitchy in my back but I can tolerate that because I'm sure it will go away in a while.
 
Has anyone else experienced this and what did you do? 

TexasJen
Veteran Member


Date Joined Dec 2006
Total Posts : 649
   Posted 4/13/2008 7:27 AM (GMT -7)   
Have you had any changes to your pain meds recently, like lowering the dose? The worst part of withdrawal is RLS. If that's not the problem, you might try an over the counter remedy called Hylands Leg Cramps. Hylands Pharmaceuticals makes various homeopathic medications, and this one is actually pretty effective. They have 2 formulas: one with quinine and one without. Check with your doctor or pharmacist first to make sure it won't interfere with anything else you're taking.

RLS resulting from withdrawal can be helped with hot showers or baths, but I don't know if that would help if it's the result of something other than withdrawal. Worth a try anyway! As if you didn't have enough to deal with already, now you get this one. Nothing is worse than having your sleep destroyed when you need it the most. :-)
Living in the Republic of Texas minus a gallbladder, a couple of cervical discs, appendix, uterus, and 18" of colon; but still alive and living with my husband, 2 dogs, 1 cockatiel, 1 quaker parrot and 2 gold fish. 


lassieluv
Regular Member


Date Joined Apr 2008
Total Posts : 254
   Posted 4/13/2008 7:42 AM (GMT -7)   
My meds have not changed in what seems like forever. I think I need an increase in pain meds but my pc dr. thinks that the 75mcg Fentanyl Patches with 5mg Percocet every 12hrs for break through pain is too much. Don't most drs increase your pain meds when your body gets used to the dose you are on?

I would dearly love to take a hot shower or bath but I can't in a wheelchair and I dare not wake up my so-called caretaker.

Thanks for the imput!

getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 40580
   Posted 4/13/2008 8:13 AM (GMT -7)   
Hi Lassieluv,

I just wanted to say that I am so sorry for your discomfort. I use to have rls really bad, I tried mirapex, but it only made it worse. Now I don't have the problem any more. So far. I know it makes you want to scream sometimes. You just can't get comfortable. I wish you the best with this issue, hopefully you can get some relief soon.

Think of you
hugs, Karen
  Moderator-Depression
 
fibromyalgia, Chronic fatigue, depression,allergies


lassieluv
Regular Member


Date Joined Apr 2008
Total Posts : 254
   Posted 4/13/2008 11:44 AM (GMT -7)   
Karen

Thanks for the empathy. I haven't had that bad of a time in several months. That's why it was so devasting to me, hopefully they are gone for a while anyway. And yes, they do make you want to scream!

Lynn
Regular Member


Date Joined Jan 2003
Total Posts : 492
   Posted 4/13/2008 12:37 PM (GMT -7)   
RLS was one of the first things that led my rhuemy to the fibromyalgia diagnosis, that and the muscle pain. I couldn't Not move. It would drive me nuts and sleep was all but impossible. Finally between Sinemet for the RLS Skelaxin and pain medication I have achieved sleep but only when I am truly tired. I still have nights when my joints hurt so badly and I have that feeling of not being able to NOT move but they are much fewer and further between. What ever your physician and you decide to try I hope you find comfort and most of all REST.
Dx'd with crohn's 1983, resections 83,85 and 89 Double Strictureplasty 2005, Dx'd COPD 2000, Psoriasis 2002 and Fibromyalgia 2005.
Currently takeing Humira, Pentasa, Lomotil, Elavil, Sinemet, Skelaxin, Advair, Abuterol, Oxycodone and Xanax as needed


Toritoo
Regular Member


Date Joined Apr 2008
Total Posts : 184
   Posted 4/13/2008 4:30 PM (GMT -7)   
Hi LassieLuv,
Oh you poor dear. I've had the bad luck to have this happen to me although not on a regular basis and it is horrible. I had to move constantly which just happened to be at night usually after I had taken bedtime meds so I was a bit dopey and had to keep moving continuesly, I hit a lot of walls I kicked and screamed did my meditive excercises and nothing worked. Thank god it doiesn't happen often but my Man, the wonderfull guy that he is suffers profoundly with this syndrom and sees a pain dr once a month for meds that don't work well for him. His is bad it doesn't stay in his legs but jumps all over his body making him have tremors and the shakes hour on end. He just began Mirapex a week ago and is still waiting for results. It is so hard to watch someone with this affliction that you love expecially. Their distress is so obvious and so painfull to them. I hope you find something to help you, there are quite a few new drugs out there for this terrible condition.
Of course it is worse for you what with your CP issues, this I know. Hang in there LassieLuv and we will all keep you in our prayers or thoughts, whichever applies.
                                           I'm out,   Toritoo
My mom also suffers with RLS but seems to have it undercontrol for the most part, as long as she doesn't miss a dose. If she does it comes right back and her legs start going a mile a minute. It hurts so bad to see anyone like this but your Mom? your Man? makes it even harder. sad

lassieluv
Regular Member


Date Joined Apr 2008
Total Posts : 254
   Posted 4/17/2008 6:25 AM (GMT -7)   
Thanks Toritoo - I didn't know anyone suffered as much as me with this problem.

I don't have it every night either but when I feel it coming on I know I am going to have a rough night! Muscles twitching all night causing involuntary motions with no relief is just tortuous. Anyone who has not experienced RLS cannot understand the frustration. It is VERY painful with CP. My pc dr will not prescribe anything for it because it doesn't happen EVERY night. My psychiatrist prescribed Trazadone to help me sleep. It helps if the RLS isn't too bad. But I sure am not going to take the Trazadone on a regular basis. I sleep well but I seem to be in a fog when I wake up.

I'm so sorry you have to see your Man & Mom go though these horrendous nights. I'm sure you would take away their pain if you could.

Best of luck to you, your mom, and your Man.

If you have heard anything about Trazadone, please let me know. Thanks!
Do not forget to entertain strangers for by so doing some have unwittingly entertained angels.  (Hebrews 13:2)


Toritoo
Regular Member


Date Joined Apr 2008
Total Posts : 184
   Posted 4/17/2008 9:10 AM (GMT -7)   
Hi LassieLuv,
Well I really hope by now your RLS has gone away and yes it is hard to watch the people I love go through this. My Man finds that more pain medication helps him especially anything with coedine in it but he tends to over medicate.
Has for Trazadone if memory serves me (?) it is a fairly mild sleeping pill and anti depressant, now don't quote me on that my memory is.... but I think thats right. The problem with taking something that is a type of sedative (?) is that the RLS won't let you sleep so you wander around at night in a fog and usually end up hitting some walls of something. I hope your episode was something that won't turn into an all the time thing. Thanks all for the input. I'm out Toritoo

lassieluv
Regular Member


Date Joined Apr 2008
Total Posts : 254
   Posted 4/17/2008 11:40 AM (GMT -7)   
PAlady - The Trazadone wasn't MILD for me; it threw me for a loop! Yes, I did wander around in a fog - almost missed my porta potty.lol Maybe I should have tried just taking 1 pill (50mg) instead of taking two. When I did take just 1 the next night I did sleep okay and wasn't as foggy. My symptoms are gone for now and hope they will never return. I'm sure they will but I will enjoy my "peace" for now.

Wishing you, your mom, and your Man a restful evening!
Do not forget to entertain strangers for by so doing some have unwittingly entertained angels.  (Hebrews 13:2)


Marie-Claire
Veteran Member


Date Joined Mar 2007
Total Posts : 900
   Posted 4/18/2008 12:02 AM (GMT -7)   
Hi there, I suffer from CD, MS and RLS. The RLS has bothered me for years!!!! I used to pray that God would hit me with a little baseball bat and knock me out for a couple of days just so I could rest. I tried Trazadone for it, which worked for a while, but my DR. kept having to increase the dose to achieve any kind of relief....weaned off Trazadone and am now on Clonazepam, which again, worked for a while but is now having to be doubled because it doesn't work anymore. The Dr. tried me on Sinemet but it made my heart race so that didn't work.Most nights I sleep for 2 hours max...then have to get up and walk around for a while until I get so tired I can't stand it...then go back to sleep...the RLS wakes me up again in a short time....on and on.
Its hard for people without RLS to understand how painful it can be and how lack of sleep is just torture! I'm glad I checked in on the Chronic pain forum....I usually post in the CD forum....but I will come back and visit with you here more often. It was nice to see a thread on RLS.
Just seems that most of us don't just have one thing to deal with but a multitude of health problems. Thank God for Healing Well. I don't know what I'd do without your support>
Mary
51 yr.old retired RN,Crohn's D for last35 yrs..severe esophagitis, migraines,strictures,urethral stricture,depression,probable MS.,RLS, arthritis
 
 


Marie-Claire
Veteran Member


Date Joined Mar 2007
Total Posts : 900
   Posted 4/18/2008 12:03 AM (GMT -7)   
Hi there, I suffer from CD, MS and RLS. The RLS has bothered me for years!!!! I used to pray that God would hit me with a little baseball bat and knock me out for a couple of days just so I could rest. I tried Trazadone for it, which worked for a while, but my DR. kept having to increase the dose to achieve any kind of relief....weaned off Trazadone and am now on Clonazepam, which again, worked for a while but is now having to be doubled because it doesn't work anymore. The Dr. tried me on Sinemet but it made my heart race so that didn't work.Most nights I sleep for 2 hours max...then have to get up and walk around for a while until I get so tired I can't stand it...then go back to sleep...the RLS wakes me up again in a short time....on and on.
Its hard for people without RLS to understand how painful it can be and how lack of sleep is just torture! I'm glad I checked in on the Chronic pain forum....I usually post in the CD forum....but I will come back and visit with you here more often. It was nice to see a thread on RLS.
Just seems that most of us don't just have one thing to deal with but a multitude of health problems. Thank God for Healing Well. I don't know what I'd do without your support>
Mary
51 yr.old retired RN,Crohn's D for last35 yrs..severe esophagitis, migraines,strictures,urethral stricture,depression,probable MS.,RLS, arthritis
 
 


lassieluv
Regular Member


Date Joined Apr 2008
Total Posts : 254
   Posted 4/18/2008 3:51 AM (GMT -7)   
Hi Mary - I didn't expect the response I'm getting. There are many of us tortured with RLS and I'm realizing that I'm not the only one that RLS is not limited to just the legs. I's a total body experience.

The sleep deprevation is awful. The Trazadone is working okay but I only use it when I feel the RLS coming on. I am also on Clonazepam, but for different reasons. It doesn't even touch the RLS symptons.

I hope you only have RLS occasionly. Every night would be unbearable.
Do not forget to entertain strangers for by so doing some have unwittingly entertained angels.  (Hebrews 13:2)


Marie-Claire
Veteran Member


Date Joined Mar 2007
Total Posts : 900
   Posted 4/22/2008 12:06 AM (GMT -7)   
Hi lassieluv,
I do get RLS every night. It's exhausting. I'm thinking of asking the dr. for Requip...The Clonazepam doesn't work directly on the RLS...it's supposed to knock you out so you sleep through it. So you are still tossing and turning all night. Mine affects my arms as well....and now my head. Do you feel a shortness of breath coming on when the RLS is in full swing. I do.... My Dr. is a sweetheart , but she is so busy, she tends to have you in and out in minutes.
I also suffer with extremely high BP. I wonder if that has anything to do with it. ? Both my daughters also have RLS but not everynight. I'm sure hoping my new 4 month old grandaughter didn't inherit all my physical shortcomings.
Thank you for responding to my post. Just call me "tired old Mary".
51 yr.old retired RN,Crohn's D for last35 yrs..severe esophagitis, migraines,strictures,urethral stricture,depression,probable MS.,RLS, arthritis
 
 


lassieluv
Regular Member


Date Joined Apr 2008
Total Posts : 254
   Posted 4/22/2008 6:06 AM (GMT -7)   
Oh, you poor dear, you must be suffering terribly. I don't know if I cound take the RLS EVERY night. I don't have it every night - so I do get a break - but when it does come it almost drives me crazy. You must be tired most of the time due to sleep deprivation and/or tossing & turning all night.

I don't have a BP cuff at home so I don't know if affects my BP. I do have a Pulsoximeter to check my blood oxigen level which also checks my pulse. I do notice a severe jump in my pulse when experiencing RLS.

Whishing you some peaceful nights. I'm sorry your daughters have RLS, but they can surely empathize with you. And I am saying a special prayer for your granddaughter.
Do not forget to entertain strangers for by so doing some have unwittingly entertained angels.  (Hebrews 13:2)

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