Sad, scared and pissed off (Long but please read)

I am so sorry to have to vent here, but I am also wondering if anyone has had the same strange problem as I. For about 5-6 nights now I have been having this uncontrollable urge to twitch my legs and arms when I rest and try to fall asleep. This only happens at night and keeps me awake. The first few nights I was so irritated by it, thinking it was my body's reaction to being overtired, that I took two medicines which cause drowsiness in order to get some (Lortab and a muscle relaxant) Then on Tuesday I spoke to a friend and described the symptoms, she mentioned something called RLS (Restless Leg Syndrome). I didn't really give it much thought, I just kept trying to skip my daytime naps, get more exercise and really exhaust myself. But it happened again... So on Wednesday I called my surgeon and mentioned it to the PA *****turned my call and she said I could take Tylenol PM and that for some reason there are patients who get insomnia but they don't know why. Fine. SO I got some Tylenol PM and took it at 10:30 last night. WELL. Not only did it do absolutely nothing, but last night was the worst night out of them all. I tried to knock myself out again by taking the muscle relaxant once I realized the Tyl. PM wasn't doing the trick, but even that didn't help me to fall asleep. I just kept twitching and jerking and flailing around all night. I kept having to get up and walk and move around because lying there was torture. So here is where I get really Today I finally fell asleep after taking my lortab (fell asleep at 5am mind you) when I read about RLS on the internet. It turns out that there are many causes associated with it that could be my issue: B-12 deficiency, Iron deficiency, gastric surgery, to name a few. And for some reason opiates, such as lortab, seem to make the symptoms disappear, although no one knows why. When I woke at 10:30 I called my surgeon again. They wanted me to speak to the PA again, so I agreed and then the reeptionist came back to the phone and said she wa told that the PA had already spoken to me about this and that she was with patients and would call me when she was able. Fastforward to 4 1/2 hours later: She calls and I update her as to the Tyl. PM not working, the info I obtained from the internet, etc. and she promptly blew me off!!!!!!!!!!!!! She said (upon no request for a sleeping aid from me) that they are a surgical team, and that I should go to my PCP if I need some sort of sleep aid, they would not prescribe one for me. So I responded with, well aren't you concerned that I could be not absorbing my vitamins well enough. And she said "No, I'm looking at your pre-op blood work and your iron levels were fine. When you go to your regular doctor maybe she'll want to order some labs. But I think it is totally unrelated." And that was it. I mean, cut me open, take your huge fee, and then you're on your own? I just don't think that I should be blown off when I show symptoms of a new disorder that clearly could be linked to what they did to me 3 weeks ago. NOW, what's even more interesting is that when I called my PCP the recep. first said how about Tuesday at 11:30. I said fine, knowing that I'll just take my Lortab at night till then. Then she asked for more specifics and when I told her she said, you know what, take the 10:30 tomorrow (Fri). I know they always keep one or two appts open for emerg. situations. So they are thinking this is or could be serious and need attention. I'm just at a loss, a total loss of who to trust and where to go. I want to speak to my ACTUAL surgeon, but when I call I know the front desk is going to think I'm a pest and overreacting. And I don't want to be associated with crying wolf so that they never take me seriously. What to do what to do? Anyone else having these types of sleep issues? Please

Emily, I am sorry this is happening to you. Its good that you have the PCP appt in the morning, the more information the better. There are jumpy leg issues that come from vitamin deficiencies, the PCP will be able to help and guide you about seeing the surgeon. Its too bad that the surgeon's office is treating you that way, you paid a lot of money for service. Talk to your doctor about 'exhausting yourself' as well - if you are still tired mid day it sounds like you need the extra sleep and should keep up with the naps. Post tomorrow and LUK how it goes. Wishing you the best....... Tiffany

Thanks Tiffany, I will ask her about the over exhaustion to see if it is a good thing or a bad thing with regard to the RLS. I'm just really glad to be able to get some support here in the interim. I'll let everyone know what happens after I see my Dr. in the morning. Emily

Hey there Tiffany, Just wanted to follow up with the report from my PCP. Basically, she says it is RLS and that although it is hard to distinguish as to why I would have it so badly, she feels as though I may have an OVERabundance of B-12 rather than any deficiency. It seems as if it would take at least 6 weeks for a body to show malnutrition or malabsorptive issues, so that it can't be my iron as it is so often. So she wants me to not take my B-12 for the time being and medicate using my Lortab and Xanax (both are used for RLS) and then we'll see if flushing the B-12 out will reduce the symptoms. It seems as if I have a tendency towards this disorder, my husband said as we drove tot he Dr. today that I kick my legs all the time during sleep. I had no idea. The problem is that now it is keeping me awake and then also waking me from sleep. So we'll just have to see how it goes. But thank you for your help as always, it is a big help. Plus it looks as though there are others here who will go to their PCP after hearing about my surgeon referring me there for this as well. Oh, BTW, she said the reason the surgeon's PA didn't think it had to do with a deficiency is because of the long period of time it would take to show some type of malnutrition. So, I guess my treatment was fine, just not explained well, so it seemed like a blow off. She could have just told me that it was too soon to have a deficiency and that it was better to see my PCP since it was probably unrelated to the surgery at all. I just appreciate facts and explanations more than short answers and half the fact type answers. You know what I mean? Thanks again! Emily

Emily, I have gone through this at times too. I didn't ever figure out what the reason was. I just blew it off that it was my husband (now ex) driving me nuts. Anyway, if I may (cause I really do care) - -- PLEASE be careful with the Lortab and other drugs. I know when I have been tired I have been willing to do anything. I just heard about a girl (34 yo) that died from taking too may after her gastric bypass. She just died in her sleep. I pray that your doctor can give you something to help tomorrow. My surgeon ordered Ambien for me while I was in the hospital. Good Luck! Beth

Beth, I will be more careful with the medication, especially now that I know the Lortab was the only one giving me any benefit at all. I don't need to take the Tyl. PM or the muscle relaxant at all. I will see if I get the symptoms tonight and if I do I will take a small dose of Lortab, not the full 15ml, to see how I react to it. I certainly don't want to not wake up, I just need to actually fall asleep. I am supposed to start work again on Monday morning and if I don't sleep I won't be able to function. By the way, when you took Ambien, was it for RLS? Did it help? Thanks again, Emily

Dont be so quick to self diagnose - your legs are jumpy but only with specific doctor testing will you know if you have RLS. I think they test for that like sleep apena.

Well, yes, it is often not a good idea to self diagnose, but I have done extensive research on this since late last night and today and the criteria for diagnosis of RLS has four basic elements which must be present to make the diagnosis and I have all four. In fact those four criteria sound like word for word what I had told my husband and my friend before even hearing the term RLS. Also, it is a subjective disorder and while there are sleep tests for other things that can mimic RLS or correlate with RLS, it seems as if this disorder in and of itself is a bit more mysterious. But I hope that tomorrow I will get the answers I am looking for, and believe you me, if she thinks it is something else, I'll look into that as well. As for the treatment I am receiving from my surgeon's office, I still don't know what to think. But I'll keep you guys up to date as soon as I learn more. Thanks so much for your help and concern. Couldn't make it through the day without stopping by our OH message board. EMily

Hi Emily, I have RLS a couple of times a month, especially around my period. I know how frustrating it can be. Sometimes, I feel like just cutting my legs off. There is medicine that can help. I have chosen to just live with it since it only happens a couple of times each month. Mine usually begins in the evening when I am just chilling out, and it sometimes keeps me awake at night. Please let us know how it goes with the PCP. Good luck! Rosa

Thanks Rosa, It is good to know that I am not alone. What is really strange is that the more I talk about it the more I remember rare, periodic moments in my past when I had some very mild symptoms of this. I remember asking my mother about it when I was in HS and she said she too had some times when she needed to move her legs or get up and stretch while she was trying to fall sleep. That was not very often at all and actually didn't keep me from falling asleep, just made me take a little longer to fall asleep. But now I also remember a time more recent when I was visiting a friend in Vegas (when I lived on the east coast) and I was really tired from jet lag. She took me to see Cirque du Soleil and I could hardly sit still b/c my legs were so twitchy. I figured I was again, overtired. But nothing has compared to what I have experienced the past 6 nights in a row without fail. It is like my whole body is being taken over and I literally flail around to make it go away. I wish my husband could see it, but he falls asleep so easily that it is almost impossible to think he can wait and watch. Maybe I'll try to put myself to bed early and beat the clock so to speak. I'll let you know how it goes. Thanks again, Emily