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losing my head

Posted: Fri Aug 12, 2005 9:20 am
by Jesse
Hi all. I'm 25 and I've been dealing with the symptoms of RLS as long as I can remember. I was unaware of the name or cause of the condition until last year. I was feeling extremely tired and having trouble sleeping (not to mention the constant convulsing of my limbs) and I decided to read up on sleep disorders. I stumbled across RLS and was surprised to find that the condition matched my own.

Eventually I found a link to this website & I would like to thank everyone for the open & frank discussion on this board. It's nice to know that support is out there.

My legs convulse constantly day & night. When I am in bed I flop around like a fish out of water. When it gets real bad my shoulders and head start to twitch also. I am afraid that people think I am completely insane.

The worst part is the constant mental tension that I feel. It seems that if I let go of myself I will just start throwing a tantrum & scare the hell out of everyone. I thought that if people knew what actually went on in my head I would be dragged right into the mental ward.

I find it hard to keep my composure at times. I have been fired from at least five jobs (most when I was a teenager) from simply blowing up at either a customer or manager. In my current job thankfully there is no customer interaction and I make a focused effort to not get into it with any other associates.

I have had similar performance in personal relationships. My quick tongued responses usually get the best of me. I feel like my mind is always on overdrive. It seems that relaxation is just a pipe dream.

Anyway, I have probably said too much so I will stop here. I just wanted to introduce myself so thanx for reading.


Posted: Fri Aug 12, 2005 11:26 am
by TxSongBird
Hi Jesse I understand your frustration and being short tongued at times with the RLS. I have had this for a good while and was diagnosed by my Dr. last week and started on Requip .25 mg for two days then to .50 mg for five days and then up to 1 mg which made me sick to my stomach so now I am at .50 mg three hours before bedtime and it really helps. I also have Fibromyalgia so I have the pain when moving and the restlesslegs at night or when relaxing. My husband described me as a fish out of water flopping around in the bed too. It was hard for him to get any sleep so I decided to see the Dr. I hope you can get some relief from your symptoms soon.


Posted: Fri Aug 12, 2005 3:55 pm
by ksxroads
Dear Jesse,

((((((((BIG HUG))))))))))) Keeping you in my thoughts and prayers. Daily living can be a major accomplishment, not knowing why you feel the way you do and never really any answers that give lasting relief... the material life has a way of pulling us forward soon we feel as if we are with out any direction ...

The people on this message board have helped me to focus inward once again. Maybe this time it IS the answer. No matter what it has helped me to detach from the material world's chaos and focus on connecting with my body and slowing down to listen to what it is telling me.

Are you able to get an appointment with a doctor to discuss this?

This week my pain scale which the majority of the time is low scale 3-5 occassionally upper scale for a couple nights, something I have lived with, went off the charts. Being alone doesn't help. It just added to my agitation that I once was capable of taking care of everything, now I find it exhausting to drive the 20 miles home from work.

So I would put on relaxing music. Breathe. Do modified variations of tai chi. read read read through this site. realizing I was in that dark pit, and even though it was dark if I crawled around long enough I'd find the bottom rung of that ladder and slowly be able to make my way up. A couple of times I have even been in that row boat with these ladies rowing hope...

I am sending you thoughts of blessing and healing light. Hazel

Hi to all

Posted: Fri Aug 12, 2005 4:35 pm
by becat
Hi Jesse, Donna, Hazel..........
First may I say that it is wonderful to you you two......Donna and Hazel Jump right in and help support others. That's what this board is all about. I like knowing that our family here is really growing and giving each of us the chance to offer some love back. Just Awesome stuff you two. Jesse this is what this board is about. Open discussion and support. Some days we just are here because we know others truely understand and we can vent as we feel the need.
It's not EASY Jess, to be sleep deprived and in constant motion. Mental tension, ha!, down right fatigue is more like it. I am not the same person I was even a yr ago. Sleep, healing rest is so important.
If you've been in an ongoing pattern of no sleep than your likely not to have control of your emotions. Heck, it's easy to forget about how to deal with people when your just trying to make it through the day.
The girls have some good questions for you......we look forward to your answers.
Your welcome here any time! Sorry that you had the need to find us at all, but make yourself at home. Hang in there this road seems bumpy, but as you can see, many have hope.
Hazel, I have a request for you and anyone else. Would you be interested in writing a Quality of Life statement for me. I'm always adding this link, but please do think about it.
Hugs to all.

Posted: Fri Aug 12, 2005 8:14 pm
by ksxroads
It is mid day here, and I usually have trouble with the ole body about this time. and the mind tends to go!

Hope that Texas Song Bird is singing a light hearted song. Jesse, believe me there are times I have to remind myself I am a good person, caring and loving. Illness and discomfort can shroud the good qualities.

Becat, it is your Quality of Life request I read in the threads that has been my focal point, this week. Today is probably the first day I have had any true sense of clarity... yet I always would come back through that fog and Quality of Life would hit me between the eyes! Whose quality of life, the quality of life the GP was willing to offer me... what quality of life was I willing to accept! Would I choose to persevere or give up ... Yes I have given that Quality of Life much consideration!

I will be working on a statement, now that I can think outside the experiences of this week!

Am driving 2 1/2 hours to Wichita to see husband this weekend. So it will probably take me closer to four hours as I'll stop quite a bit... I'll take the camera with me and try to get some nature shots... I have mixed feelings about this, I am counting on the requip to help me out, yet if my symptoms get really bad again, the best neurologists are in the Wichita area... and believe me I'll use the ER this time.

I'll be holding all of you here in this wonderful message board close to my heart. Hazel

Be careful

Posted: Fri Aug 12, 2005 8:32 pm
by becat
You be careful on your trip. Drive safely and hope all goes great for you and the hubby's weekend. you betcha the ER works in a pinch.
To answer your question of the Q of L.........Yes, Yes, and Yes.
That's what I think the Q of L does for people. It makes you really stop and think about what RLS is doing to you and your life, those around you, and how much are you willing to give that control to the doctors.
Thank you for thinking about it. We with ya on those questions.....just want that basic sense of hope.
We'll hold you dear til you get back home safe.

Posted: Sat Aug 13, 2005 2:11 am
by Jesse
Donna, Hazel, & Becat thank you for your extremely supportive responses. I truly appreciate it. I have an appointment with a neurologist next month. Im afraid to go on any meds though -- I had been taking Effexor for about two years and while I thought it helped my anxiety I ended up being a complete basketcase. For my sleep troubles my doctor put me on Ambien & then Valium. Neither helped me feel any better. I find that the only thing that helps somewhat is to control my diet. I went to an allergist last year and found out that I have an allergy to metabisulfites. My neck will flush red when I eat or drink anything with this awful preservative. This also seems to worsen my RLS.

Hazel, I will take your suggestions and try some relaxing music along with tai chi. Take care on your trip to Wichita. Thank you all for your warm thoughts in response to this post.


Posted: Sat Aug 13, 2005 3:23 am
by Sara
Hi, Jesse, and add my welcome to the other ladies so far!

Glad you'll be seeing a neuro; sounds like you could use some help and relief.

I can't recall if Effexor is a drug that's supposed to be "RLS friendly" or and "RLS foe"... but anti-d's and anti-a's are often notorious for being tough on RLS and having funky side effects that make you sometimes wonder if it's better than the anxiety/depression they're treating you for. There are lists on the site somewhere of good/bad meds for RLS sufferers. You might want to copy that down for reference in the future.

Becat was completely right (and I'm sorry, don't recall who else said it ... you were right, too! :wink: ) that extreme sleep deprivation can have some REALLY bad effects on self-control, relationships, patience, etc. Some of our worst-sleepers around here know EXACTLY what you are feeling.

Hope that things improve, and you hang in there!
Sara :D