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On the outside looking in

Posted: Wed Sep 01, 2004 1:01 am
by tj
Hi, I'm Tj

I just recently found the discussion board and found it very interesting. I've been trying to figure out where to write and decided to start a new posting. I'm not the RLS sufferer, my husband is. He was diagnosed about 3 years ago. It started out as very mild and got worse very fast in a short period. In the beginning of this they ran every test you can think of to find out what was wrong. A neurologist diagnosed it and we've been dealing with our family doctor ever since. He's been very knowlegable about RLS and has listened to us quite well. My husbands symtoms have become very bad. He experiences pain 24/7 in his legs and arms, he's very weak, twitches alot, has numbness in his calves and the back of his arms. Of course he has good days and bad. The doctors have also diagnosed him with anxiety disorder, panic attacks, and depression. His physical state has become so bad that the doctors pulled him out of work in February '04 and is still out now. Because of the numbness he's having now the doctor is sending him for a nerve conduction test, but that's not until Oct 13. Long ways off yet. His sleep stinks he averages about 3 hours a night and like many of you know as soon as he tries to rest he has to get up and start pacing the floors. Some nights he will twitch violently like there's someone inside him controlling him like a puppet. He also shakes his legs while sitting and never realizes he is doing it. I worry about him all the time, especially on bad days cause he's home taking care of our kids when I work. What's sad is we have a list of numbers to call for our 2 oldest to call if something happens to daddy while I'm gone. Thank god we haven't had to go that far yet. This past year has been really rough both mentally and physically for both of us. I enjoy finding sights to go to and see people feel the same way we do. I sympathize with all of you who suffer from RLS. I know I can't imagine what each of you feel everyday, but as a spouse of sufferer my heart goes out to all of you. Thanks for letting me speak to you. It helps alot for both of us. I
am going to try and get the questionaire done to help out too. Thanks for listening to a worried spouse.

Sufferer with a Compassionate Husband

Posted: Wed Sep 01, 2004 1:23 am
by jan3213
Hi T.J., this is Jan

It's so good to hear from the spouse of a sufferer of RLS because I don't think many people understand that RLS effects both husband AND wife (except RLS sufferers, of course). I'm so sorry for both of you. I've had RLS for 20 years (you can see where my bio is below). My husband is so good to me. It sounds like you are a very caring wife, too. It's a hard disease to understand and a hard one to have to "live with" as you do with your husband. My husband has spent many nights walking the floor with me, afraid that I might take too much medication because I wanted to sleep so badly. He has rubbed my legs, drawn hot bath water at 3 a.m., anything he could think of that might help me. I admire you so much. It sounds like you really love your husband are are so committed to him. We are a caring group of people here. There are people in this discussion board who are very knowledge about pharmaceuticals, people who are great researchers, and people who are willing to just listen anytime you are feeling down, mad, alone, or whatever!! We are a family, and we are glad you've joined us. In the meantime, one of our members, Jumpyowl, has prepared a questionnaire which he would like each member to fill out (in your case you would be filling it out for your husband--or he would be filling it out). Jumpy's EMAIL ADDRESS is listed under MEMBERLIST under the heading RLS.ORG - DISCUSSION BOARD at the top of this page. Please EMAIL Jumpy and request a QUESTIONNAIRE and he will email one to you. Please be sure to send him YOUR EMAIL ADDRESS. You can prepare it electronically and EMAIL IT BACK TO JUMPY. He would like it as soon as possible. It's not complicated. There will be a meeting in November in Long Beach, CA and we hope that he will be able to gather as much information as possible to so that he can make a presentation at the meeting on the behalf of all RLS sufferers. PLEASE HELP!! In the meantime, you've found a family. Welcome!!


Posted: Wed Sep 01, 2004 1:53 am
by Sole
Hi Tj,

Welcome. I'm so sorry you had to find yourself here. Your story is painful to read. This RLS demon certainly takes its toll. Can I ask how old your husband is? Is he taking any medication for the RLS? Does his doctor realize that the anxiety and depression are common side effects of RLS? Did he prescribe an anti-anxiety and/or an anti-depressant? Hopefully, he did not prescribe one of the many anti-depressants that are known to make the RLS worse.

What a vicious cycle RLS can be. Symptoms cause lack of sleep and sometimes terrible pain, which results in horrible sleep, which results in anxiety, depression and stress, which results in worsened RLS symptoms. A vicioius cycle indeed. I assume your sleep suffers also. Its rare that one half experiences such hardship without the other half experiencing it too.

If you're looking for advice, you've come to the right place. People here are very willing to share their experiences and offer ideas.

If you're merely looking for a sympathetic place, again, you've come to the right place. My heart and prayers go out to you and your family.

on the outside looking in

Posted: Thu Sep 02, 2004 1:40 am
by Guest
Hi Jan and Sole, It's tj

I was kind of surprised to see such quick response, thanks. Thanks for the kind words from both of you , it really helps. Tim is 38 with a birthday coming in december. He has just recently been put on Lexapro and that seems to be working for now. They've tried him on alot of different meds, but he's very sensitive to alot of them. He's on pain medication daily, because without it I do not think he could function at all. I'm a little hesitent to say which one because of the reaction it often gets. He's tried numberous sleeping pills and for him Ambien seems to work best for him. He wanted me to tell you that it helps him get a couple of hours of descent sleep before the pain and shakey legs wake him up.

Jan, it also sounds like you have a very devoted husband and helps you as much as he can. And you are right Sole, it affects my sleep as well. I still average alot more than him, but he can wake me up either by shaking or I sense him gone. we have a 3 year old that adds to the sleeping problem. He likes to sleep with us and he kicks and turns alot. When he is finely asleep we move him to his bed. It's much nicer when he stays there all night. I worry sometimes when Tim is out pacing because his legs are so weak his legs buckle on him sometimes and he hits the floor. Jan, I can relate to your husbands feelings about taking to much medicine just to feel better at times. One thing Tim says to me quite often is "why can't I feel normal again." Do any of you have problems with your appetite? Tim has become a very poor eater. I try to tell him just eat a little to keep your strengh up, but it's very hard for him to do that. Thanks again for the ears from you two. I am so glad I found this spot so I can actually have communication from people who know what I am talking about. Take care.



Posted: Thu Sep 02, 2004 2:53 am
by me

Hi, TJ

Posted: Thu Sep 02, 2004 10:34 am
by jumpyowl
I am sorry I am late answering but I have been busy with the survey.

You wrote:

[In the beginning of this they ran every test you can think of to find out what was wrong. A neurologist diagnosed it and we've been dealing with our family doctor ever since. He's been very knowlegable about RLS and has listened to us quite well. My husbands symtoms have become very bad.

Lucky you found a good neurologist! Your husband's symptoms sound like mine except I am much older. I also have to see a neurologist for nerve conduction test on 10/13/04, what a coincidence!

Among the many tests he had, did he have a sleep test?

Did typical RLS medications were of some help, such as Mirapex, Neurontin, or benzodiazapines? Opioids and Ultram also seems to help.

He also shakes his legs while sitting and never realizes he is doing it.

I am doing it right now while typing. Woke up at 3:00 am with a terrific pain in the right knee which slowly dissipated while carefully moving it.

Yes, please fill out the questionnaire I think I already sent you. It would be a great help for everyone.

I will know more after I read it and then possibly I can offer some suggestions.


Posted: Thu Sep 02, 2004 10:46 am
by jan3213




Thanks for the warning.

Posted: Thu Sep 02, 2004 11:11 am
by jumpyowl
This is more logical! Thanks! I had to finish answering several e-mail's before I got back to my OUTBOX.


Posted: Thu Sep 02, 2004 11:16 am
by jan3213

I actually thought I had this message in another place (it's EARLY), but glad you saw it! I was desparately trying to get your attention and thought this was the best way to do it!


Posted: Thu Sep 02, 2004 11:23 am
by jumpyowl
Yes, you posted it in the private e-mail. :wink: I am sorry about the desperation I caused.

I wasn't REALLY desperate

Posted: Thu Sep 02, 2004 12:05 pm
by jan3213
Jumpy, this is Jan

I wasn't REALLY that desperate :lol: I just wanted you to get what you wanted so I could help you! Anyway, glad you're back and hope that doctor listens to you!!! I've been keeping up with your posts! I always do and it's always interesting to follow your journey!

Hope everything goes well for you (personally AND with this huge venture you've taken upon yourself for our benefit!)!!!

Thank you so much!!


on the outside looking in

Posted: Fri Sep 17, 2004 2:00 am
by guest tj
Hi Jumpyowl,

This is tj. Sorry I haven't replied sooner. I do not have my own computer so I have to use my moms when I get the chance. I,m still working on the questionaire, hopefully we'll get it done and to you this week. Tim has tried so many different drugs over the past few years I can't remember all of them or all of the effects they had on him. He's very drug sensitive and alot of them didn't argee with him. He just tried Mirapex again and it causes horrible stomach aches for him. He had a sleep test in 2001 and it showed 20% movement then. I want to suggest another one to see how it's changed, but he doesn't want to do it right now. He's used neurontin in the past. It helped quite a bit with the shakes, but he was passing out from it. We didn't connect it with the medication until the doctor took him off of it. Tim didn't want to go off of it, but for some reason the doctor did. He never really told us why, just that he thought it would be better for him to be off it. He uses pain meds now (don't feel comfortable saying which one yet) and he has a sleep aid and an anxiety one. I'll put those on the questionaire. Thanks for this site and your input. It helps to know theres people who suffer like my husband and theres such caring people out there.

When I try to send this with my user name it doesn't let me. Can anyone tell me what I might be doing wrong when I try to reply? I'm nto that computer smart sorry to say. Thanks for any suggestions that can help.


RE: husband's appetite

Posted: Fri Sep 17, 2004 3:01 am
by Sara
Hi, TJ--

I'm new around here, but saw your story about your husband. What a horrible and scary time for your whole family.

I just wanted to say, I'm very drug sensitive, too. If there's a possible side effect, I seem to get it, and that makes things difficult. (I'm not medicated for RLS. Thankfully, my symptoms are still manageable without.) At any rate, I wondered if your husband's lack of appetite might be due to feeling lousy from the medications. And perhaps an even better explanation might be his depression and anxiety. BOTH of those conditions WILL often affect appetite negatively.

I won't try to give any advice; you seem to be doing all you can, and have good medical assistance. I imagine that your concern and understanding means a lot to your husband. Those of us with RLS get pretty used to people's reaction being... so your legs feel funny at night, so WHAT! You may not know first-hand what it feels like, TJ, but it's going to be a blessing to your husband that you understand the seriousness.

Hang in there, and all the best to you and your husband.


It's probably not you, TJ

Posted: Fri Sep 17, 2004 4:23 am
by nephriticus
When I try to send this with my user name it doesn't let me. Can anyone tell me what I might be doing wrong when I try to reply? I'm nto that computer smart sorry to say. Thanks for any suggestions that can help.


I have noted several idiosyncracies with this discussion board. You may be experiencing the same thing. When I log in, the discussion board will show me as online at the bottom of the page. However, I am unable to make a post as myself, though I can as a 'guest'. Also, the top of the discussion board the icon still indicates I need to login. So, I login a second time and then the top of the page will indicate the icon to logout. Now, I just login twice each time. I think it has to do with the page I'm on when I first attempt to login. I think I know how to circumvent the second login but I haven't experimented with it yet.

I also noticed that the dates and times of posts are not the same logged in as when not. It kind of threw me before I realized what was happening. It has to do with the time zone in one's profile.


Thanks, Neph; Hi, TJ

Posted: Fri Sep 17, 2004 1:36 pm
by jumpyowl
I just recently had the same type of problem you are describing. You are right it has to do with the page. If then it asks me what my user's name is and I let him know, then it just says that name is taken.

I have not figured it out yet but your explanation sounds right.

TJ I am waiting for your questionnaire (your husbands' actually). Even if it is not completely complete, I sure can use it.

((( :oops: ))) to you all!