newbie from pittsburgh

[venus]

Im new to the forum but not new to RLS. I think ive had it off and on since i was preganant with my now almost 19 year old daughter. Mine however has always been just in my feet... and not pain..just crawling sensations

over the years it came and went... a week here a week there a month here n there etc.

I mentioned it to each doc i had seen at my varying pcp's over the years.. they all looked at me like i was nutz and did nothing.

I am now 43 and just over a year ago it came.... and never left!! Went to my pcs and had a physical/bloodwork. came up i was a diabetic (low side managed by diet) anyway- becuase i was now a diabetic, pcp listened to my foot symptoms
and sent me for nerve study..(looking for neuropathy) but instead that showed a buldged disk and was told to do physical therapy for it. I didnt... went to chiropractor, who seemed to be able to fix it a bit. (no idea if this part id rls related or not) that only worked for a cpl months. oh and that doc prescribed neurontin, even though i didnt have the neuroptahy.......so i didnt get it filled. ( i see now that it is often prescribed for rls)

The next SEVERAl months i didnt sleep...and i mean only an hour or two in the morning. I was a walking zombie... eventually the severe lack of sleep caught up with me and on july 9 in the middle of day and from no where, i had a full blown panic/anxiety attack/ nervous breakdown of some sort. it lasted 15 hours and even after that i was all weirded out. My sis and hubby took me to my pcp who gave me a low dose kolopin. WOW..sleep! in the meantime , he ran bvlood tests..told me my bloodwork was all fine..... as a general rule becuase of mistrust for docs, i went and got a copy of my bloodwork.... there were several things highlighted as too low or two high.... and by some miracle i had already set up a physical appointment with another doc at this same pcp and went in for that, bloodwork in hand..told him the history....and asked him about using the kolopins for sleep. we decided that i could do a low dose for sleep without much problem...then i showed him my bloodwork and asked about all the highlighted stuff. he said those things deffinately needed re tested and then at the same time we both said about che3cking my iron...he was in agreeance. got that back and my ferritin was 7. he prescribed a multivitamn with iron but i went with a multi plus an iron pill. (i know ill have to be careful with this) WONDER IF THERE IS A SELF IRON TEST TO MONITOR?)

within 5 days.......... NO RLS. i immediately went off the kolonopins and three weeks later still no rls. (i should clarify that ive taken very small pieces of the kolonopins for the anxiety that hasnt seem to leave since that huge episode, but its not often and vary sparingly and not even at night) i dont know if i forgot to mention anything..but am very much hoping the iron was it!!
dont know what ill do if it comes back, but i am sooooooooo enjoying sleep! people have no idea how valuable and lucky they are to be able to do something so simple.

[venus]

thought id mention this; first doc i seen at my pcp when i had that huge attack..i told him i thought the attack was from not sleeping for months on end becuase of the rls.... he told me to go to a shrink i did not!

so glad i had already previously set up an apptment for a physical with another doc at same pcp for a week later... and also glad that i heard about the iron problem from this site...althought this doc did say he wanted to check my iron at same time i did- it appears he atleast knew something about rls!

[ViewsAskew]

Venus, it sounds like you're doing a great job of taking care of yourself even if the doctors aren't! I can't even comment about how mad I get when I read things like the doctor told you to see a psychiatrist!

No worries about taking too much iron. You're so low that you could take it 3 times a day for a year and probably not be over 100. And, most of us aren't so disciplined to take it 3 times a day for that long.

My SIL has RLS and she also finds her RLS goes away immediately when we starts taking iron. I feel a teensy bit envious of both of you. I'm also extremely happy it works that way. I hope it continues to.

[badnights]

I can't ABIDE hearing about physicians who can't grasp the ultra-simple concept that sleep deprivation causes disastrous problems for anyone who has to suffer it! What could be more obvious? And on top of it being so obvious, they're students of the body, they should be aware that sleep is crucial to proper functioning, to quality of life, to everything !!!

I also was sent to a psychiatrist, because my GP saw me unmedicated for RLS, and being confronted with my inability to stand still (let alone sit) and my completely stressed-out state (having not slept for days and as if that wasn't bad enough, been tortured the whole time, too) thought I was about to kill myself - well, you know she was right!! but the solution was medication for the RLS not an anti-depressant. By the time I got in to see the shrink, the problem was long resolved, and he said (very wise, not like some doctors) that lack of sleep can cause the symptoms of every known major psychiatric disorder, even psychoses. My GP was surprised to learn that. She also now knows that a stressed-out person about to kill herself does not always need an anti-depressant. She has learned so much from me, in fact, that she correctly diagnosed someone else with RLS last month!

Another rant - sorry ! I'm glad you're posting with us. I'm impressed that you're holding firm to what your intuition tells you about your own sanity & body and the effect of chronic sleep loss on your state of mind. I am hoping your super-low iron will easily be fixed and the RLS will go away! There is no home-testing method I know of, I'm sure most of us would love something like that.

[Polar Bear]

This is really interesting regarding the effects of lack of sleep.

[venus]

i cant seem to access the mayo clinic effects of lack of sleep page. When i click on it, the algorythmn for rls keeps coming up (i viewed it yesterday)

i even tried a search for "effects of lack of sleep" and it produced a cpl thousand responces....

would def be interested in reading- heck- im pissed enough to go give that doc a copy too.

[badnights]

that link is PB's signature which is a link to the Mayo algorithm. When she said "this" I think she was referring to what I'd said in my post, not to the link. But there must be something published somewhere about the effects of lack of sleep.