Quality of life 2006

For everything and anything else not covered in the other RLS/WED sections.
ksxroads
Posts: 645
Joined: Tue Aug 02, 2005 8:19 pm
Location: Kansas

Postby ksxroads » Wed Sep 06, 2006 3:52 pm

A year ago I was so relieved to know that there was a name for my physical problems. It could only get better.

Yet like Lynne mentions there are times when meds stop working, need tweaking etc. It is so frustrating... overhwelming at times. I am a RLS infant.

I get so tired of dealing with my dr who does not fully understand this illness. Yet I am truly greatful that he is willing to work with me this last year. Yes I am thankful, even though I tire of questions Why are you taking more of your medication, why aren't you doing better, why what ae you doing to make it worse? Your blood work is normal... yadadada

I get so tired of dealing with people who do not fully understand this illness. You know what you need to do you are just out of condition, you need to work those legs??????????? give me a break. No I give myself a break. I withdraw. I shut down.

To the normal population, when you explain to them you have Restless Leg Syndrome - seems they knod in comprehension - a problem with your legs. If you were to do this or that... whewwwwwwww How about calling Parkinson's disease Chronic Shakiness Syndrome, exercise those arms more or Alzheimer's disease Chronic Forgetfullness Syndrome - work out that brain some more.

I get tired.

Found myself lately saying I can't wait till I retire, so I can travel during July-September away from this place, surely there are contributing environmental factors such as chemical applications to fields, allergy something that makes this condition worse.

That is what I find occupies my mind when I should be enjoying my family, my life. What can I do to make it stop or at least be manageable without having to be grilled.

Always looking for bright spot in my heart to go with the smile pasted on my face.

This too shall pass. I have lived with that motto all my life. It will get better for a while. It will get worse for a while.

Trying to focus on the positive aspects is a good thing. Some days, weeks, I just can not stay on task! Yet I know I will again.

No I have no regrets now about having RLS.

It could be much worse.

It is my life. In time I will be more accepting ... less critical. Just a cycle of life that I strive to understand.

This too shall pass. This too shall pass.

Love you all for the understanding you give, Hazel
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation.

Music can be made anywhere, is invisible and does not smell. --W H Auden

tazzer
Posts: 626
Joined: Fri Mar 10, 2006 6:36 pm
Location: Northern Virginia
Contact:

Postby tazzer » Wed Sep 06, 2006 4:37 pm

amen! thats me too, just tired, tired all the time.

dee
I feel like a science project!!!

“The syndrome is so common that it should be known to every physician.”
Dr Karl Ekbom, 1945

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

Postby becat » Thu Sep 07, 2006 7:41 pm

Hazel is this your statment for me to use? :D

User avatar
ctravel12
Posts: 2125
Joined: Mon Jul 03, 2006 2:02 am
Location: Lake Havasu City, Arizona
Contact:

quality of life

Postby ctravel12 » Thu Sep 07, 2006 11:39 pm

I have had rls for at least 15+ years and did not know what it was until just a couple of years ago. I would try to lay in bed trying to clam the legs and would either have to lay in a kneeling position or just plainly get up and walk the floors hoping to get some relief. About a year ago I started taking clonazepam and decided to stop it cold turkey as I did not like taking a control substance ( not realizing it would create withdrawals until I talked to my dr.) I spent one week walking floors, crying, punching my legs and still no relief. No one would explain and just give you something to apease you. Then I heard about Requip (tv ad) and decided on that. In the beginning it worked well and then all of a sudden I had rls anytime during the daytime. Besides just being restless they ached from my hip to the bottom of feet everyday. I had to stop traveling as the last episode in an automobile was a nightmare. I finally found a wonderful neurologist (who actually knows about rls)just about two weeks ago and he asked why I quit clonazepam and I explained why. He asked if I had the same systems as requip and I said no. He suggested to give Clonazapam another try and see what happens. After a few days and nights of misery I decided to try the clonazapam. So far it has been almost two weeks and I do not have any episodes during the daytime and am able to sleep at night. My QOL has certainly gotten better and hope that it continues.
Charlene
Taking one day at a time

KarinReno
Posts: 10
Joined: Mon Sep 25, 2006 1:00 pm
Location: Reno, NV

Becat

Postby KarinReno » Thu Sep 28, 2006 2:24 pm

Would it do you any good to get a Quality of life statement from me if I don't take any meds? Also in my 30 years of dealing with RLS I've only sought a physician twice and both times I was lucky enough to find some that knew about it. I think it helps that I usually try and find younger doctors as they seem more up to date on their medical education.

I can write one no problem, but I don't want to be contrary to what you are trying to accomplish here.

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

Postby becat » Thu Sep 28, 2006 3:06 pm

Yes, Yes, Yes, Yes,
Positive Quality of Life statements are just as important as the ones I normally get. Please feel free to wrtie on, not only for you but for me too!
I don't think there is always a horror story behind RLS and we have good doctors that help us everyday. A pat on the back is a great thing.
I just think that adding your voice is important, over all the our cause.
Thank you for asking Karin.
Lobe hug and that big moon above,
Lynne

KarinReno
Posts: 10
Joined: Mon Sep 25, 2006 1:00 pm
Location: Reno, NV

Q of L

Postby KarinReno » Fri Sep 29, 2006 12:48 pm

Ok then! Here it is.

I've had RLS as long as I can remember, of course we didn't have a name for it back then. I just called it my "jumpy legs". At first it was just hard for me to sit still in cars, and class rooms. I was constantly bouncing my legs and at night I just twisted and turned alot.
As I got older it became much worse. I would take hot baths before bed, stretch and take a handful of Advil, still I would be awake half the night thinking I was going crazy.
People in my family tease me because I have to take naps during the day, they can't belive someone as young as me needed them. Well daytime was the only time I could really sleep.
I won't take trips on planes that last longer then 3 hours because it is so uncomfortable for me to sit in one position for that long.
I have an office chair in our house that my husband has taken one of the arms off of so I can sit in it cross legged instead of just with my legs stretched out in front of me.

As for doctors: I remember going to a doctor years ago and he prescribed quinine for me after hearing my symptoms. He didn't have a name for it and the Quinine only worked for a short period of time. I think it was more like a placebo (I just wanted it to work so bad)

Then I researched it myself on the internet and finally came across the name RLS, I went to another doctor after printing out an article and handed it to him and asked him if he had ever heard of it. He said he had.
We did a full blood work up on me and it all came back normal across the board.
I told him I had found relief in the past when I had taken pain medication like hydrocodone or Lortab. He started prescribing me 60 tabs a month.
I took those for 2 years and yes it helped my RLS but I realized that I was
A. becoming addicted to them and,
B. I didn't want to be on drugs the rest of my life.

I stopped those cold turkey and it was really bad.

Now I'm back to my nightly hot bath, stretches and 4 advil a night before bed. I've also found that drinking alot of water before bed seems to help alot.
I'm lucky. My RLS isn't painful, it's just very annoying and probably 5 out of 7 nights a week I get less sleep then I'd like.
I also sleep on the couch a few nights a week when it gets so bad that Im keeping my husband awake.
Does it affect my Quality of Life? Yes, absolutely Yes. I've tried to make the best of it, but it's hard to be tired all the time........

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

Postby becat » Fri Sep 29, 2006 4:01 pm

Kairn,
Thank you so much for your trust and your voice.
These are each tiny gidts to our community and I will never do anyhting but my best with each one of them.
I am honored.
Love Lynne


Return to “General Topics: RLS/WED”

Who is online

Users browsing this forum: No registered users and 1 guest