Restless Legs Syndrome (RLS) Discussion Board

The PMLS has pushed me over the edge in the last year. My health concerns feel insurmountable, and I don't remember feeling like this in my life before (except when I had c diff for 2 months. But even that was different because that was very much an acute issue).

But the PMLS...this thing is a chronic issue. It is eating away at me. My quality of life is rotten. Tomorrow I'm having labs done and I'm so scared I'm barely able to do it because I'm afraid of what I might find out about my health, which I haven't taken very good care of in the past year. I am, in fact, terrified of the results. I am concerned about my liver, cholesterol, etc. Those things were beginning to show some signs of distress about a year ago, and I haven't improved my "lifestyle." I don't think I have diabetes but that's a possibility too. I feel like I can't dig myself out of the health hole I am falling into.

My new PCP's greatest advantage is that he's willing to have me as a patient, ie he didn't refuse me at the phone screening stage due to meds. He doesn't seem to have the best bedside manner, so I'm afraid I'm about to get some rotten labs with a doctor who doesn't know me and might shame me or ball me out. Which will NOT help me.

Last night I went to bed early and woke up at 1:30 am feeling fantastically rested, which I rarely feel, and looking forward to waking up after the full night feeling great. Nope. I felt worse when I woke up. I imagine maybe my meds wore off and I was thrashing about.

This board is a lifesaver for me as I know you all understand how it can be. I feel on some level that I've lost my will to live, like things just feel unsurmountable right now. The best I can hope for when I wake up in the morning is feeling kind of numb, never rested or energetic.

It is a dark place to be. I don't want to die, but honestly there are times when I feel like that wouldn't be the worst thing that could happen to me. And that thought makes me pretty sad. It feels like my life is just kind of a grind, and that's about it. Not a lot of joy, just the herculean effort it takes to function all the time. The good news is my upcoming appointment with Dr. B, which gives me hope. I haven't told my current sleep doctor how bad it is because she keeps telling me that she's done all she can for me, so I don't see the point in going into it. And there really isn't with her.

On the good news front, my asthma-like issue is improving and the fatigue is less oppressive.

I feel your pain. My PLMS just keep getting worse too. I am trying to improve my health though, with food. Not much I can do about my kidneys though. I just keep going. I try to do the things I love on the days I feel ok. On the other days, I veg. I'm trying to finished up unfinished projects, not sure why. Maybe because two women in our town died last week. They were both younger than me. I do believe one should try to live the best you can. Enjoy what you can.

Hi Deb, thanks. I remember reading a similar-feeling post from you awhile back I think.
It does help to feel heard and understood.

Yes, I'm trying too, I guess that's the good news. I mean, I take my dog for walks. I've been working on my airway issues. Although I haven't been successful in cutting down the junk food yet, I have been successful in cooking more and eating more vegetables. And I am going for the blood draw even though I don't want to. I probably just need to have a good cry.

I wish I had some magic words...alas all I can do is tell you that I get it and I wish I could help.

leggo - a good cry brings healing with it. Allow yourself.

I do understand this feeling. I am very content in my home life but just occasionally on bad days/nights I feel that a few days of being alone, just being.... and not 'making little' of discomfort (not that anyone thinks I should 'make little' of it.) I guess just to curl up and lick my wounds, except rls wouldn't give me peace to curl up.

As Views said.... I get it and wish I could help.

Oh ladies!!! You know not how much you are already helping. Just by seeing me, not dismissing my concerns, and not judging me for complaining...it's eveeything to me. Thank you so much.

leggo - I think it's about having our feelings accepted.
Knowing that on this Discussion Board we can say what we want, shout and yell, vent, have a good moan, and also share our joys.
Everyone understands and noone judges.

We all want to help, help each other, and to learn more for ourselves.

oh gee, leggo, I've been there. Have I ever been there. I couldn't have imagined being how I am now, which is not too bad compared to then, and having a semi-reasonable quality of life. I didn't think it was possible to get to somewhere like this. So if you can, believe that the seemingly impossible is quite possible. Just because we don't know how something can happen doesn't mean it can't.

And for goodness' sake, celebrate your victories! You're walking the dog, you're adding healthy foods, you're getting that blood drawn and seeing that doctor even though you're gun-shy. These are all very positive things.

badnights wrote:oh gee, leggo, I've been there. Have I ever been there. I couldn't have imagined being how I am now, which is not too bad compared to then, and having a semi-reasonable quality of life. I didn't think it was possible to get to somewhere like this. So if you can, believe that the seemingly impossible is quite possible. Just because we don't know how something can happen doesn't mean it can't.

This reminder is hugely helpful, thanks.

Polar Bear, thank you. Yes, that's exactly it. My friends have difficulty understanding what a challenge living with this thing is. At some point, people who don't understand just tire of hearing about it I think. So it's very helpful to be able to say what I truly feel here.

Polar Bear, thank you. Yes, that's exactly it. My friends have difficulty understanding what a challenge living with this thing is. At some point, people who don't understand just tire of hearing about it I think. So it's very helpful to be able to say what I truly feel here.

Absolutely - That's one of the reasons why we are here. Because we are needed, and because we care. We all want to help each other. You can be yourself here.

Everyone here, feels like my friends. We have all been here for so long, expressing our feelings and troubles. I am about to stop taking oxy again. I have added it along with my methadone for a month or so. I am out of them, as of tonight, plus, my doctor doesn't like it when I add them.
I realized that I am one night away from functioning. I decided that she needs to see me like that. When I have one bad night, I usually don't do anything the next day. I just have no energy. Can't usually nap, since the spasms will start.
In Sept. I added the sinemet, but I don't like that drug. It doesn't help much. Then the sleep periods get shorter and the spasms become stronger.
All we can do is our best. Work with what we have. When I do feel like doing something, I chose to do the stuff that makes me happy. I will be doing a lot of oil painting.

What kind of oil paintings do you do. Deb? If nature, I bet you have a lot of subjects where you live.

Yes, mountains, trees, but also I did pandas two years ago. It was her request. I love the way skies look too. When we drive around, I'm always looking at everthing.

debbluebird wrote:Yes, mountains, trees, but also I did pandas two years ago. It was her request. I love the way skies look too. When we drive around, I'm always looking at everthing.

Would love to see your work some day!

I would love to see them too, Deb!

Polar Bear, yes it is wonderful to have a place to be ourselves.

The latest trend with my sleep is waking up one to three times a night, no matter which med I take. I hate it. I've been tracking things more closely. My sleep apnea appears worse on Norco and better on Clonazepam. But clonazepam doesn't help the legs. I woke up with the pillow on the floor etc.

Now that I've been thinking of more RLS stuff, I realize I definitely have it, in addition to PMLS. The RLS is only occasionally for me, like in the movies but only sometimes, long flights, and 10 min or so before I fall asleep. I'm thankful that's not more. The PMLS appears to be every night.

I've been watching a lot of RLS foundation webinars. They are quite good. I suspect the reason why I wake up feeling like I want to cry every day is low dopamine via time of day and my own physiology and lack of quality sleep.

Honestly, the hardest thing about facing unemployment/underemployment in November is how bad I feel physically, like I just don't have the chutzpah it requires to get work. For example, I applied for one job where they said send in your resume and call for an interview. I sent my resume a few days ago and I still haven't called! My follow through on things is particularly bad right now. I will try to do it tomorrow.

Then, there's all these little details with the ending of my job that I'm having trouble keeping track of. Log in here, log out there, take note of this here, etc etc etc.

Tomorrow I have to work both jobs, which I try to avoid.