How horrible!!!!!

[jrowley]

Well I decided I had better introduce myself since I have made some post. My name is Jan and I live in Michigan. In the past 6 months I have had tons of testing done because I started to have severe abdominal pains. Well first trip to the GP nothing, next to the Gyno he found nothing with the female stuff but suggested I had a bladder diease called Interstitial Cystitis. So off to the Uro and sure enough I got IC, ok so I start taking the drugs they give you but I am still tired all the time and ache all the time so I found a new GP. I explained how I was feeling and to top it off my husband has been complaining of me jerking at night so he suggested RLS. So off to the next doc this one sent me for a sleep test.

Well I had that test last night and what a horrible expience that was. The techs talked all night long and everytime I turned around someone was slamming doors. Then that stupid thing they put in your nose made it so I could hardly breath. Horrible horrible Well to make a long story short, the tech came in around 3:00, cuz the big IC bladder was saying get to the bathroom , and said you had a rough night. Do you think you will be able to fall back to sleep after you go potty? I said probably not. She said well I got what I need if you want to go home and I said yeah. Then she says but I didn't get your legs jerking. I said probably not since I didn't sleep . So home I went, now though they will probably say well nothing showed that you have rls, however, my legs contantly go numb and tingle when in the sitting position, riding in the car, or riding on the back of our motorcycle. Then at night they jerk and I know they do cuz when I wake in the morning the backs of my calfs ache like when you use your muscles too much. I've never had such a horrible night as last night. If it's not worse enough you got all those wires attatched to you, you have to hear someone talking all night and doors slamming. I thought the idea was to sleep.

Ok enough of that all things in a nutshell: I am 39 started having problems with my legs when I was a little girl (remember my mom putting heat pacs on them after play). Started having headaches when I was around 14. Developed arthritis when I was around 18. Can never remember a time where I didn't got potty alot. Last but not least now this.

So I would like to say thank you for being out there and for all your words of wisdom.

[ViewsAskew]

Jan, those sleep tests can be awful. Based on my experiences, I would request a new test and in a new place if possible. They can't tell if you have RLS from the study anyway, but they can tell if you have PLMD - and if so, how many, how often, and how much it arouses you. A bad test will affect how the doctor treats you. There is no way you can be expected to sleep with techs talking and all that. I don't know how much costs vary, but my insurance just paid over $2000 for the study I had in December. Seems to me it's like fraud to charge you or your insurance for something they did not really deliver. I had one repeated recently; got a new tech and it was completely different. I also got preapproval that if I was awake late because of the RLS, they would let me sleep in if I did fall asleep.

Your post reminds me of the hardest part of RLS. It seems on the face of it that the hardest part is dealing with the RLS itself and it's side-effects, but fighting for what you need really seems harder to me. It's a constant battle for so many of us to find the right doctors, the right drugs, etc.

I'll be interested to see what your sleep doc tells you about the study. Keep us posted and hope those legs are quiet. Keep reading the old posts, too . They will help so much in the long run.

Ann

[lyndarae]

WELLL LADIES I am doing my first sleep study on the 16th you have given me some food for thought::::::::::::::::::::::think I will bring a book::::::::::: hehehe

[jrowley]

Thanks Ann. I guess just wait and see for now. I go back to see the doc on Feb. 21st so we will see what he has to say.

[GaAudrey]

Hi Everyone!

I've had two sleep studies and both were done in a fairly good place with fairly good techs, but it still seemed hard to sleep with all the wired attached everywhere. Seems I thought it took me 30-45 minutes to fall asleep when it really only took 9 minutes. They said average was 5-7 miinutes for most people. Also they didn't notice the leg kicks in the first study. They said they didn't know why I was waking up so tired and with such head aches. When things continued and I continued to complain, they did another study and they must have looked closer this time because turns out I do have leg kicks but mine are MANY, but mild in motion. so they didn't really register. Since I sleep so shallow they were enough to keep waking me up. Also since I sleep so shallow I don't breath deep enough to bring in enough oxygen in my body during the night so I was giving myself headaches every night. For a while I was put on oxygen while I slept. I didn't and don't have sleep apnea, I just sleep very lightly and breath very shallow so dont pull in enough oxygen. Yep, I probably should still use the oxygen, but I can't stand the canulas on my face - even the micro was to large for my nose and the headaches have lessened compared to what they were. So for now I'm making the trade off. I think if I could just get a decent nights sleep it wouldn't matter if I was sleeping shallow. I can't stop dreaming long enough to get a good nights sleep. You know, I might have just solved my own problem where that is concerned. Maybe if I went back on the oxygen, I could sleep better and the dreams would go away. I think I'll try that tonight. I hate it when I seem like such a dumb.... when I'm normally fairly smart!
Good luck with your sleep study! Audrey

[jrowley]

Well I usually am asleep within 10 mins of hitting the pillow and don't wake again till morning or my good old fiend IC bladder tells me to wake So for me to get only 3-4 hours and it taking over 2 hours to finally fall asleep and not really be sleeping like I normally do is not good. Most of my problem was not the wires they didn't bother me at all it was the darn techs talking all night, LOUDLY, and the other people slamming the bathroom door, and the abillity to hear when somone is urinating in the room next to me then flushing was the reason for the sleepless sleep test. If and when I have to have another one I will probably go to a different center as our local one is not very peacefull for someone trying to sleep.

[GaAudrey]

Hi Jan, I do know what you mean about all the noise! I can't sleep when there's noise around me either. You'd think in a SLEEP center they'd let you SLEEP Sorry you had such a bad experience. I think I'd demand my money / insurance back and have a retest some place else. The test really can be helpful if done right. I've had to have so many things in the last three years done twice where the tech doing the test simply didn't bother to do it right the first time. It waste my time and the insurance money. I finally said something so Kennestone had to redo the last one for free. I get tired of feeling like I'm fighting to feel good though. Anyway, you hang in there and maybe they'll get to the bottom of all your leg movements soon! Sounds like RLS, to me but I'm no doctor!

Audrey

[jrowley]

Thanks Audrey. I am going to wait till the 21st and see what they did get who knows maybe they were able to get enough info to give a diagnosis