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Old 03-16-2011, 08:16 AM   #1
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RSD in whole body?

Ok, with RSD, I have what I call flares because at times it will virtually go away and sometimes it consumes my whole body, like now. It lasts for weeks or months when this happens. Does anyone else have this? What do you do for relief (other than medication)? Also, I seem to have terribly cold hands and feet in combination with it and get the cold sweats (my whole internal thermostat is always wacky), is this a part of it? My toes and fingers feel almost like I have frostbite. It's driving me NUTS. Sometimes I start to wonder if it has anything to do with the herpes virus due to similar symptoms....although I never have had herpes or cold sores but I wonder because some people have it and show no symptoms. I feel like all my nerves are freaking out and that's why I question herpes since that's where it lays dormant and then activates. Has anyone heard of a connection? Thanks!!!

 
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Old 03-16-2011, 02:11 PM   #2
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Re: RSD in whole body?

Sorry i dont, however i do get it not only in my legs but arms as well...hugs to you.
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Old 03-17-2011, 10:49 PM   #3
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Re: RSD in whole body?

your symtoms are shared by tons of us..what sucks more is going from blocks of ice to immediate burn..feels like hell froze over and the devil himself decided to retorch it yikes..plus the swelling sometimes it gets so bad my toe lteraly split open at the tips..as far as a connection to herpes i havent heard of a connection thou we are all trying to find a connection..this is nerve damage basically i dont think an underline of anything else would apply but who knows..good luck to you and god speed

 
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Old 03-18-2011, 06:08 AM   #4
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Re: RSD in whole body?

[QUOTE=painman2009;4709277]your symtoms are shared by tons of us..what sucks more is going from blocks of ice to immediate burn..feels like hell froze over and the devil himself decided to retorch it yikes.."

SO TRUE! My RSD started after I had a 2 year bout with Streptococcal Arthritis, Post Reactive Arthritis, It was similar to Rheumatic/Scarlett Fever had 103 fevers daily for 4 months straight which started and stopped at the same time daily, was crazy, and the other symptoms are too many to list. It took them so long to figure it out it was too late to treat, damage was done. I thought I'd actually die from the pain during that time! Thanks for your response!

Last edited by tattoogirl; 03-18-2011 at 06:09 AM.

 
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Old 03-18-2011, 07:57 PM   #5
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Re: RSD in whole body?

no prob. Im still looking and asking re connection so far nothing so I will keep u informed i find anytjing to support that theory..thanx

 
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Old 04-27-2011, 06:21 AM   #6
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Re: RSD in whole body?

Hey tattoogirl! I love that name. You have the same (almost) symptoms as I. I take requip Don't work) so I suffer. I don't know what else to do!? This Friday I am telling my dr to give me a new med. As for the connection of herpes and rls, I hope not for my sake! Take care, dee

 
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Old 06-28-2011, 12:10 PM   #7
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Re: RSD in whole body?

I have had RLS symptoms in my whole body. My legs, arms (shoulder to elbow) and neck. My neck and head would not feel comfortable on the pillow no matter how I adjusted. So irritating at the time. Hope you find help and relief!

 
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Old 05-20-2012, 06:47 PM   #8
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Re: RSD in whole body?

I am dealing with the whole body feeling of RLS right now and can't handle it. I feel like I am going insane. Last night I took 5 hot baths, took a very late walk, did stretches, and just plain wiggle my body all night. I finally fell asleep at about 5:00 this am and was bushed. On Friday, I work and had the same problem the night before, so I was a walking zombie when I went into sessions (I;m a clinical psychotherapist) and that was so tough trying to stay with the client and not nod off to sleep. My legs, arms, body, etc. never bother me unitil I lay down, then all the nerves wake up at once and have a field day. Requip didn't work for me either and I am also taking klonopin, which doesn't seem to work. I am in desparate need of ideas of how to get to sleep.
Thanks. Essetaylor

 
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Old 05-20-2012, 10:01 PM   #9
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Re: RSD in whole body?

hey Ild ask about the pain killer or pain killers you r taking. mine keep me awake and anxious. and i get the same problem. if i don't take em I'm overly mellow but still can't sleep cause of the pain.

 
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Old 05-22-2012, 10:13 PM   #10
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Re: RSD in whole body?

You can get RLS in the extremities so yes it is possible to have it other places. A warm bath helps a little and calcium magnesium is said to work. I would also try potassium. Valerian root helps me go to sleep when it is bothering me. Hope this helps!

 
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Old 05-23-2012, 05:55 PM   #11
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Re: RSD in whole body?

curious how this thread took a site jump. this is RSD in whole body. umm this RLS do you all have RSD as well.. if so. its just my confusion. if not well still confused lol well I guess it doesn't matter we are all looking for help.

 
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Old 06-15-2012, 10:13 PM   #12
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Re: RSD in whole body?

I've had RLS as far back as I can remember in my legs. It went away about 10 years ago but came back last year with a vengeance in my back: shoulder blades to the waist. Walking helped, so I usually did so for 2-3 hours a night until I fell asleep exhausted. When I first started looking for a cure 40 years ago, doctors thought I was crazy. 6 weeks ago I decided to google RLS and discovered a local doctor who specializes in it's treatment. He prescribed the generic version of Mirapex, which stimulates dopamine production. This was a silver bullet for me. Magic!!!! A tiny little pill that relieves most of the torture I've been enduring all my life. I haven't had a single episode of RLS spasms and night walking since I took this miracle pill. I still have some RLS back pain but nothing I can't handle. My doctor is trying to adjust the medication dosage to eliminate those as well. I have great faith that he will. So if you haven't tried it yet, give Mirapex a try. I hope it works for you all as well.

 
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Old 06-19-2012, 07:53 AM   #13
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Re: RSD in whole body?

I have it both in my legs and arms. Not fun. Arms wake me up as often as the legs, expecially after an active and productive day.

 
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Old 08-25-2012, 08:14 AM   #14
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Re: RSD in whole body?

Hi I to suffered with rsf. Nearly a year of different meds. Cabasar for one. Worked for a lttle while but then the dose was meant to increase. Stopped taking them. Lots of magnesium and vit b & d. End the end I have epidural. Heaped. Last almost 12 month before it came. Put up with it for several month but relented and had another epidural. Rsl gone..., I still have problem with feet and legs but can manage that most time. Anyone tried acupuncture. I did. Helped for awhile but only to comeback.I feel for all of u. I know what its like. Hope u all get answer too.. have any of u tried exercises to strenghten all muscles in legs
, core, glutes. Might help use the different muscles (Pilates) goodfor direct muscle activation. Good luck all of xxx drink plenty water too!!!

 
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Old 06-11-2013, 09:52 PM   #15
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Re: RSD in whole body?

I have right side RSD; omega 3 reduces inflammation, MSM relieves pain, turmeric reduces inflammation and relieves pain; I also take vitamin C and magnesium daily. I use these combined with traction and stretching with good results; I DO NOT take prescription drugs.

Last edited by gazel; 06-11-2013 at 09:55 PM. Reason: added info

 
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