I guess I just need somone to talk to

Share how living with this disease can and does impact your relationships. How do you cope? What questions to you have?
ctravel12
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I guess I just need somone to talk to

Post by ctravel12 »

I have a wonderful husband and he is so good to me but does not know or understand about rls. I have been doing quite well for a while and then lately it started up in the early evenings. I would sit and rub my legs, stand up trying stretching and even walking around and he says nothing. It finally subsides about an hour later as do not want to take my meds at least an hour before going to bed.

Sometimes I just l want to run away with hubby and our dog. I just do not have the get up and go like I used to do. Is this have something to do with the rls or the heat or both? It is very hot right now (in the 100's) My energy level is completely drained and do not want to do anything.

I have to watch what I feed my hubby as the dr wants him on 100 carbs and 1800 calories a day. He is so good about that. Sometimes I just want to go and eat the worse thing for me and know that it will not be good for me nor for him. Does anyone else feel that way?

I know that he had his heart attack in 1986 (46 yrs old) and I was the one going around house going bonkers and he was so calm and told me to call 911. He got through that ok and had a stent put in 1999 and came through that fine too. I guess down deep I am worried about next Wednesday, but know he will do fine.

I guess I should practice what I preach. Put everything in the hands of the Lord and he will be there for you. Down deep I know that but am just feeling out of sorts now.

We walk three days a week and I feel like saying "just forget" but know once I do it I feel better which I do. Sometimes I think that I am losing it.
I know that just sitting home is not good as then you will feel worse. I feel like it is a "Catch 22".

Last week, I went with my friend to work out at Curves and it took everything in my power to do this. Once I get finish I feel fine.

My sleeping habit is still bad. Now and then I will sleep for about 3-4 hrs straight and then other times wake up about every 1-2 hours. I do go back to sleep and then I have the worse nightmares and get up feeling like I have been dragged through the wringer. I have talked to my dr about my sleeping habit and they do not have an answer.

I know that others are worse off than me, but just had to talk to someone and knew that I could talk to you guys. Don't get me wrong, I can talk to my husband but he does not have any sleeping problems nor rls so he cannot relate to it and you people can.

Thanks for listening to me.
Charlene
Taking one day at a time

eliza
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Joined: Thu Nov 30, 2006 5:56 pm
Location: Washington State

Post by eliza »

Ah Charlene, I'm sending up prayers for you - and for hubby too. Maybe you just go ahead and eat something you crave - just enjoy every morsel. If you have repercussions from it, you won't want it again, but you'll be satisfied.

Hopefully the thoughts and prayers of your fellow RLSers will lift your spirits and calm your RLS.

Eliza

ViewsAskew
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Post by ViewsAskew »

Charlene, I think all of us have been there before. It's not a fun place, is it?

Just a thought: might this be caused by the Mirapex? Many of us have had problems with mood while taking it. Also, if your symptoms are consistently happening earlier. . .just watch it. It could be the stress. If it keeps up, though, it may be augmentation.
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.

ctravel12
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I just need someone to talk to

Post by ctravel12 »

Hi Eliza thanks for the comforting words. It is great to know that we count on our family here. What a Godsend. You know Eliza you are right to just eat it, but do not want to do that in front of hubby as that would temp him and I do not like eat out by myself. Boy, I am really messed up.

Ann, you are right it is not a fun place. I thought of Mirapex too, but all I take is half of .125mg at night. I was first taken 1/2 at dinner time and 1/2 at bedtime and cut it down to just 1/2 of the .125 mg at night time. Thanks for the concern. I am hoping that it is just stress, which I do not want to have either. Like I said it is a "Catch 22" but appreciate your comments and will definitely watch it.
Charlene
Taking one day at a time

SquirmingSusan
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Post by SquirmingSusan »

(((((((Charlene))))))) Here's a big cyberhug for you.

It is so hard to be dealing with your own health issues and then to have to deal with the health issues of a spouse! I know. I've been there. It's no fun. There really should be some kind of universal law that says when one person in the family is sick, the others shall remain healthy. Not only that, but the brakes won't go out on the car, the drains won't back up, the hot tub won't spring a leak and get water all over the floor, and the furnace won't start making huge exploding noises every time it kicks in.

(All that happened to us while my dh was in the hospital for a month, wondering if he was going to live.)

It seems like when it rains it pours. :evil: So of course you're stressed out. Of course you're having a bit of a crisis of faith.

So do what you can to take care of yourself. And maybe when your husband is having his tests you can sneak off to the hospital cafeteria and get a piece of cheesecake. :wink:

Sending prayers and good vibes your way...

Susan

becat
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Post by becat »

Awww Charlene,

You have gotten some wonderful comments already, I might not have much more to add........
But I can type! lol

Spouse and partners can be our best support and then our toughest critics. Even the really good ones could have no idea what it's like, not having RLS, it's like saying "I feel your pain!" They can't feel our pain, the creepy crawlies, or the need to abuse our limbs...........
Jan said it best to me, "don't compare pain, because you can't really feel another's pain, you can empathize, but you can't feel it yourself." That always stuck with me, because she was so right. We both burn our fingers, but mine hurts me, yours hurts my heart.

You bet stress gets into your way, I'm sure this is is enough to set anyone of us off. We seem to take what happens to our own bodies and figure that out or cope. However, our spouses, different story. We still want to be able to "fix things" and do it faster than life offers.

The lack of sleep could be involved with everything you have written. The less sleep I get and if it's been going on that amount builds up and you end up zapped for a while. It's just hard some days to push that to the back and keep moving and being social. You don't see the world the same way. I understand, we all do.

The doctors can help, but it might mean another medication. So next time they tell you, they can't help, pop them back to reality. Ask them "who will help me with that then? Some ramdon person on the street?" UuuffffAaaaaaaa

Charlene, your a strong woman and you have a heart the size of Texas......your loved, needed, and wanted here, always.

I think the cheesecake sound like a fabulous deal.
My prayers and a moon full of love to you.
Lynne

ctravel12
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I guess I just need someone to talk to

Post by ctravel12 »

Hi Susan, Lynne, Eliza and Ann I am so happy that I have you as my family. When reading this, I got tears in my eyes. I just have to get myself out of this slump. I do not know when that will be. Lynne you are right I am a strong person and know that it will get better. But when who knows.

I had another bad night with the legs earlier in the evening and so decided to just take the clonazapem and not the mirapex. Well that was not a good idea as I woke up at 2:30 am and my legs were going into overdrive. I feel like I'm dam if I do and dam if I don't.

I feel like I am at a quandry and do not know what to do. I keep on saying to myself "this too shall pass" and waiting for it. I really appeciate all of you listenining to me. I can cry at a drop of a hat.

I had mentioned to dh on Friday to let's do something Sunday and he was not too responsive and then when I got home from church last night, he said do you want to still do something and I immediately said YES. I was not talking too much yesterday am sure he felt something was wrong.

We are going with my sister and brother-in-law today and just going to haver a good time. We are going to go to an Indian Casino to have lunch and, of course have to gamble. I think it may be good for the soul; however what else I do not know.

Susan, thanks for the comment about cheese, but that is one dessert that I am really not crazy about but a sure I can find something else.

You are all such a wonderful family. I do not know what I would do if I did have you to talk to.

I was just talking to my sister-in-law and started crying and she said why didn't you come over yesterday and we could cry together. I told her that I do not want to upset her. I am so blessed to have a wonderful family here.

Thanks for listening to me. I love you all more than you will ever know.
Charlene
Taking one day at a time

lizbestill
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Location: North Carolina

Post by lizbestill »

Hi Charlene,I just read your post, and I can sure realate. Last night I took my Mirapex as usual, but squirmed so much I had to get up so my husband could sleep. I wound up taking one clonazepam (which I really shouldn't do) so after about 2am I went to bed and slept. I was up by 6:30am and now I feel like a walking zombie. The clonazepam makes me feel really tired, groggy, drained .......My husband won't let me drive when he knows I've taken it and it makes him aggravated that I even take it in the first place, but he doesn't understand that I'm so tired I'll take whatever I can to get a good night's sleep. He's usually very understaning about this, he just worrys that the clonazepam is going to do me more harm than good. So, I'll look for you tonight, I'm sure I'll be up!
What is the time difference between us anyway? Elizabeth

ctravel12
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I guess I just need somone to talk to

Post by ctravel12 »

Hi Elizabeth thanks so much for your post. I have enjoyed reading yours too. Like you I take mirapex .125mg but just half the pill just before dinner and also take the clonazapem .75mg. about half hour before bedtime. The other night I slept straight through for six (6) hours and felt I just died and went to heaven; however last night was up a fews times. Oh well, I guess it could be worse. I sometimes do feel like a zombie in the am but it does calm my legs down.

I had a bout with my legs yesterday but have some stress going on in my life right now but will get over it.

You asked about the time. Arizona never changes time and I think you are either 2 or 3 hrs ahead of me. Elizabeth, hang in there as things will get better.

Hubby is doing better about my legs, but right now we do have an issue that we are working through. It will take time but we will work through it.

Have a good weekend. Also we are on the chat line on Monday nights, please join us. I get on at 8 pm in that way it is not too late for the others.
Charlene
Taking one day at a time

lizbestill
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Location: North Carolina

Post by lizbestill »

Thanks for telling me the time, everytime I get on I'm the Lone Ranger!! It will be nice to see someone else on there for a change!! :D Elizabeth

KBear
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Post by KBear »

Since this topic was resurrected I thought I would chime in.

Charlene- I feel just like you described and I'm not taking any Mirapex or Clonazapem. I only take an occasional Ambien (once or twice a week) when I get desperate for some sleep. My energy levels are poor and I sometimes feel llike there are lots of things I would like to do if I only had the energy.

It sounds to me like the drugs just aren't working and it makes me sad on two counts 1) because your are still suffering with RLS despite attempts to control it with drugs and 2) because if I decide to try one of the other drugs (the DA's are out of the question for me) I may still suffer with the same RLS symptoms. :cry:

I keep hoping for a treatment that works with "acceptable" side effects.

I hope things are going better for you. I know what you mean about 6 hours of sleep being like heaven, I feel like a different person when I get a good nights sleep . . . or maybe that different person is the real me. :?
Kathy

Link to the Mayo Clinic Algorithm:

http://www.mayoclinicproceedings.com/pd ... 907Crc.pdf

ctravel12
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I guess I need someone to talk to

Post by ctravel12 »

Hi Kathy I am so sorry that you cannot find the right meds for your rls. It is so true about not getting the right amount of sleep. Sleep deprivation is a miserable thing to go through and know that everyone on this board has experienced it.

I hope that you are able to find relief for your rls and sleep.

Thanks again to you and Elizabeth. You both are really nice people and am glad that you are part of the family.
Charlene
Taking one day at a time

waterloo2
Posts: 466
Joined: Fri Mar 16, 2007 5:51 pm

Hard time of it

Post by waterloo2 »

Hi all

Im new to this rls thing and i dont like it
one bit, im having a hard time of other
issues like Diebetes since before having
Diebetes type II was not tooooo bad
but now im having a hard time of it. Am
going to docs on thursday there must be
something she can give me, as im on
a lot of meds at the moment.

gill (UK)
:roll: :roll: :roll: :roll: :roll: :roll: :cry:

ctravel12
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Joined: Mon Jul 03, 2006 2:02 am
Location: Lake Havasu City, Arizona
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I just need to talk to someone

Post by ctravel12 »

Hi Gill I understand about wanting to talk to somone and you have definitely found the right place. I do not have diabetes but know that if other members have I am sure they can give you some good input on it.

Please let us know what the dr says when see him/her on Thursday. We really do care and if you just want to come here to vent, talk or whatever we will be here for you and will support you as much as we can.

Take care and hope that you have a good evening.
Charlene
Taking one day at a time

jan3213
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Post by jan3213 »

Hi, it's Jan

I wanted to chime in here for a sec. waterloo2, I just found out I have Type II diabetes and am overwhelmed, at the moment. I see my doc the 24th for the first time since getting the news (about 2 weeks ago). I feel for you!!

I've been on Mirapex (2 mg.) and Clonazepam (.5 mg.) for a long time--well, different doses of both from time to time. Most of the time, my RLS is under control. But, occasionally, when I'm under a lot of stress, when I eat food with MSG in it (Chinese), when I have walked too much--my legs give me fits. But, I have to take the darn meds, because if I don't, I would go NUTS! So, guess we are all different as much as we are all alike. Hope that makes sense.

Just wanted to add my two cents worth (it's not worth that much anymore, probably (LOL)), and wanted to offer some support.

Just got back from vacation and am ready to hit the road again. Good to be back home.

Jan
No one is alone who had friends.

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