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Old 01-20-2012, 07:19 PM   #1
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I need help desperately, please !!!!

Hi all, I'm sorry for the urgency of my title thread but I am so in need of help with RLS. Here is my story:-

I have suffered with this for a number of years but could control it. I knew that antihistamines, certain alcohols and other medications triggered it off. I would get this gnawing feeling in my legs and sometimes my groin and couldn't do anything but get up and then eventually go back to sleep when the tiredness overtook me, which could be as short as up to an hour later.

Unfortunately, I had my appendix out just over two weeks ago. Every night since this operation, I have had severe RLS. I was on Tramadol for the pain for the op and found that this taken when the RLS got really bad did make my symptoms subside. I went to see my doctor last week and asked about Dopamine antagonists and he said he was reluctant to try me on that due to the problems that they cause. I told him that the tramadol had worked and he said I could take these a few times a week but be careful not to get addicted.

The problem has intensified this week with me getting completely exhausted on Thursday and becoming quite depressed, (I have suffered with depression and anxiety in the past). I was crying for a lot of the time that day and was so hacked off with the RLS. My wife gave me two Temazepam that she had and I slept all night thank god. I then did some research and found that Valerian had worked for some people and also Magnesium, so I got some from the herbal shop. This had no affect at all this night and I am up at 0300 in the morning writing this. I tried a hot bath and cold wet towel on my legs and also one Temazepam. I have now just taken some Tramadol and am waiting for this to kick in.

I am so exhausted with this now and am not a good person when I don't get sleep at the best of times. Please people who have any advice where do I go from here ? Any comments and advice are most welcome.

 
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Old 01-21-2012, 09:47 PM   #2
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Re: I need help desperately, please !!!!

My heart goes out to you. I know how dreadful RLS can be.

You wrote that the severe RLS began after your appendix surgery. I would try and focus there. Have you taken any new medications? Changed your routines in any way? Are you taking any new over-the-counter medicines? Eating any different foods since the operation? Since your symptoms began after the operation, I would investigate every possible change that may have come about during this time.

I have found a number of triggers for myself. If I have the spice ginger, it will trigger a worsening of RLS. Also, glutamates. Glutamates are present in many processed foods -- anything that has hydrolyzed proteins, monosodium glutamate, etc.. I avoid most chicken, beef and vegetable broths and boullions because most have them. Caffeine is problematic for me if I have too much during the day, terrible RLS at night. Another thing for me is if I walk too much during the day. That will always bring a worsening or RLS at night.

Again, the fact that your RLS got suddenly severe right after the operation is something I would investigate.

I really wish you th best. I know how terrible RLS suffering can be.

 
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Old 01-22-2012, 02:22 AM   #3
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Re: I need help desperately, please !!!!

Thanks Cerajoan for your reply. With regards to what you advised, the only difference I can see since I had surgery is that I was taking Tramadol for a few days and then found without it, the RLS returned. The only other change is that I have practically cut out most alcohol of which I did drink 3 times a week before but that sometimes set off the RLS. I know when I googled RLS and surgery, Wikipedia claims that RLS can be worsened by surgery itself. So this was the line of thinking that I was going down.

I had a terrible day yesterday and was most depressed. I intend to go back to see my doctor tomorrow and see if they can start me on some medication for the RLS. Once again, thanks for taking time to reply to me.

 
Old 01-23-2012, 03:46 AM   #4
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Re: I need help desperately, please !!!!

Hi there ,I can sympathize with what you're going thru,I have had RLS all of my life,first noticed by my mom when I was in my teens, I am 59 so that's how long I've dealt with it, I was only diagnosed about 8 years ago because the doctors kept saying it was nerves , a sleep study revealed mine, since then my neuro has prescribed a dopomine (requip) some doctors hesitate to prescribe because dopamines are addictive,tramadol is a pain medication that I take for my spinal stenosis but has never done anything for my RLS because it is neurological /cns disorder, there is an underlying cause and could be a precursor for other neurological diseases, requip is want they give people with parkinsons to help control tremors but is also affective for persons with RLS,

My symptoms are at night but I am also bothered if I have to sit for long periods , such as waiting for my doctor ,sitting in church,sitting under the hair dryer seems to set it off,its not the crawling sensations for me as much as it is just feeling the need to move my legs for some unknown reason, lately I've had myclonus jerks which are more
pronounced at night , the jerks can be anyplace on the body, I notice them more at night probably because I am still, I actually hit myself one time ,when my doctor told me it was a sign of my restless leg, I thought that was crazy since it was called restless leg , she gave me some information on it, I had to be put on anti anxiety medication because I thought I was losing my mind, if you are not seeing a neurologist ,I would get to one , RLS can very depressing because you can't understand what is wrong with you, I stopped telling people that I have it because most of them think it is a phantom or made up condition ,I am removing some things from my diet ,gluten,wheat,anything white and I've actually seen a reduction in my symptoms , I also have cervical and lumbar stenosis that complicates it even more, you might want to look into a dopomine if you doctor is willing to give it , I don't take it every night, just when I need the rest

if you work it will be hard to take dopamines because they tend to hang you over the next day

 
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Old 01-23-2012, 10:12 AM   #5
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Re: I need help desperately, please !!!!

Thanks Capatga for your reply. I have been back to my doctor today and she prescribed Clonazepam, where she thinks it should be working in the space of a week. However, she did say that it may not work. She is reluctant to prescribe a dopamine agonist because of the side effects and I do work and unfortunately, am prone to side effects of medication.

Last night the RLS started as I was settling down to sleep, as it has every night since surgery. I got up and took two Tramadol and this worked within an hour. However, I did feel a bit shakey this morning and sort of hungover but it was certainly better than the lack of sleep. I was so depressed at the weekend and was crying a lot of the time. Today has been a better day and I am trying to think positively. I have to return to work on Saturday and just hope that I feel alright to do this. My GP said I could take the Tramadol as well as the Clonazepam but wants me on the Clonazepam long term. I have a list of health problems as long as your arm now and am 9 lots of medication at the age of 44.

I really appreciate you taking the time to post a reply to me and although I would not wish RLS on my worst enemy, it is heartening to know that other people know what I'm going through and are kind enough to offer advice and well wishes.

 
Old 01-25-2012, 04:27 AM   #6
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Re: I need help desperately, please !!!!

Quote:
Originally Posted by yorkshirelad View Post
hi all, i'm sorry for the urgency of my title thread but i am so in need of help with rls. Here is my story:-

i have suffered with this for a number of years but could control it. I knew that antihistamines, certain alcohols and other medications triggered it off. I would get this gnawing feeling in my legs and sometimes my groin and couldn't do anything but get up and then eventually go back to sleep when the tiredness overtook me, which could be as short as up to an hour later.

Unfortunately, i had my appendix out just over two weeks ago. Every night since this operation, i have had severe rls. I was on tramadol for the pain for the op and found that this taken when the rls got really bad did make my symptoms subside. I went to see my doctor last week and asked about dopamine antagonists and he said he was reluctant to try me on that due to the problems that they cause. I told him that the tramadol had worked and he said i could take these a few times a week but be careful not to get addicted.

The problem has intensified this week with me getting completely exhausted on thursday and becoming quite depressed, (i have suffered with depression and anxiety in the past). I was crying for a lot of the time that day and was so hacked off with the rls. My wife gave me two temazepam that she had and i slept all night thank god. I then did some research and found that valerian had worked for some people and also magnesium, so i got some from the herbal shop. This had no affect at all this night and i am up at 0300 in the morning writing this. I tried a hot bath and cold wet towel on my legs and also one temazepam. I have now just taken some tramadol and am waiting for this to kick in.

I am so exhausted with this now and am not a good person when i don't get sleep at the best of times. Please people who have any advice where do i go from here ? Any comments and advice are most welcome.
hi, i feel your pain. I had the sams thing happen to me. I had a mild case until 4 years ago when i had diverticulitis surgery, ever since then it is so severe that i have it 24,7.i have tried about everything, the problem is that when something works, it doesent work for long. Then im back to square one.right now i take mirapax .075 extended release.and now i get what they call the twitches where by whole body twitches when i go to sleep. So now i take a .05 clonapin an hour after the mirapax and wait for 1 hour and i sleep well, what a mess.

 
Old 02-17-2012, 08:51 PM   #7
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Re: I need help desperately, please !!!!

Hi, only fellow sufferers can imagine what you are going through, I know my family all think I am cuckoo..and have even accused me of being a druggie, as I was in such a state when my drugs (Pexola) was suddenly taken off the market (only in Zambia, where I live, due to some customs mix-up...)anyhow in sheer desperation I tried every other remedy and found that a good all round vitamin additive, together with iron supplement, herbal sleep remedy, a daily yoghurt and aloe juice drink did help, thank goodness now back on my "drugs..."Best thing I ever did for my marriage and sanity was to get a single bed, both my hubbie and I talk to each other in the mornings now...instead of "You kept me up all night...you work me up when I got some sleep etc." just keep on trying something will help and remember there are lots of us out there who are supporting you

 
Old 03-09-2012, 02:34 AM   #8
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Re: I need help desperately, please !!!!

I have a bad case of rls. My mother did also. I take Requip XL. 40 mil. Twice daily and it,s all but gone. It works miracles. Make sure you take the time released, I took the regular requip and it did not help just made me I'll. I have been on this for 4 years. Check into it it has changed my life.

 
Old 03-09-2012, 08:21 PM   #9
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Re: I need help desperately, please !!!!

Often wondered if rls is hereditary, i know my eldest son does have some symptoms, not as severe as mine, and i watch my 8 yr old grandson sleeping and being very restless, kicking badly and tensing up in his sleep.

 
Old 03-10-2012, 02:40 AM   #10
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Re: I need help desperately, please !!!!

My neurologist says it is. Espically if it is a mother and daughter. My mother had it bad but never knew what it was. My was severe also. It would wake me up at night at meetings I would have to excuse myself. I'm telling you the Requip XL time released 2 times daily has saved my life. No joke. Very few symptoms now unless I miss a dose. Changed my life.

 
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Old 03-10-2012, 10:22 AM   #11
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Re: I need help desperately, please !!!!

Mine i a lot similar ,my mom noticed when I was a teen , hard sleeping and sitting in class, not until I was in my early 40's was I given a sleep study and that's when they diagnosed it and I was prescribed requip 2 mg at night ,helped but made me dopey ,hated the way it made me feel, then I was prescribed cymbalta since I also had pain from spinal stenosis, my insurance will not pay for cymbalta, so now I take citrolopram which surprisingly helps,but I still have night when I only sleep a few hours because of the myclonic jerks which can affect any part of the body, I also practice yoga and meditation ,I feel your frustration I am approaching 60 and still trying to cope , its hard to explain to my family and friends ,they look at me like I have two heads, I didn't know there were triggers ,I thought it was just some mixed signals from the brain ,I have an upcoming surgery ,I will surely ask my neuro and pay attention to anything unusual, glad to get this info

 
Old 09-28-2012, 11:40 PM   #12
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Re: I need help desperately, please !!!!

I'm 67. I have rls also. It's awful.

 
Old 09-29-2012, 08:17 PM   #13
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Cool Re: I need help desperately, please !!!!

Hi, know the feeling, the desperation, depression, and the "Zombie Feeling", I did attend a clinical testing for patients with RLS, and after some research they recommended any of the dopomine represants, I have been on S4 Pexola for about 5 years, only a .125mg dose nightly, together with a multi vitamin (high in magnesium) and a natural sleeping pill, No it is not a cure, but I do get to sleep for at least 5 hours most nights, about 4 out of 7 in a week, then RLS kicks in again, so I have got used to walking the floor, watching TV standing, and eventually dozing off on the couch....My family think I am a druggie, because I do not move without my tablets, luckily only 1 of my 4 children are affected, and he is on the same meds. Yes there are certain things that seem to trigger worse attacks, I am most unfortunate as mine seems to be chocolate...my best move in life to get a decent sleep was to move in to my own room (after 46 years of marriage) so that when I do nod off I am not disturbed, and can sleep through some of the kick boxing...without my husband waking me up to complain about me kicking him...Good Luck, and try all the advice, and lets try and get more publicity for the RLS sufferers, not life threatening for sure, but sure as hell must be one of the most unpleasant afflictions ...

 
Old 09-29-2012, 10:03 PM   #14
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Re: I need help desperately, please !!!!

well I didn't have the surgery yet , I met with a new doctor that specializes in neuromuscular diseases and he prescribed primidone for the restless leg , now I sleep about 6 hrs uninterrupted ,lot better than what I was getting before, the primidone seems to be working right now so................we'll see

 
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