"Restless Legs Syndrome"

"Restless Legs Syndrome". That's the diagnosis I received from my good Christian doctor yesterday. She is a wonderful doctor too. A delightful sense of humor, a willingness to actually listen to the patient and she even wrote a Bible verse on my prescription!. Pretty cool stuff, eh?.

Anyway, so as to provide a little background, please allow me to share the letter I gave to my doctor yesterday with the rest of you. It goes as follows...

----------------------------------- LETTER TO MY CHRISTIAN DOCTOR ----------------------------------------------

Dear Dr. Lewin (Please read and put in my medical records)

I realize that there are a lot of different issues here but I would greatly appreciate your taking the time to read this and go over them with me (even briefly if possible) because these are all very real, serious and ongoing problems that are adversely affecting the quality of my life every day and I'm having an increasingly difficult time dealing with them.

First of all, I hope and pray that you can help me understand what is going on with my left leg as I find it very troubling and even frightening. Last night as I lay in bed trying to go to sleep, I had an intense desire to stretch my left leg every few minutes. I'm not sure what biological process is involved in the body's need to stretch. Perhaps it has has something to do with lactic acid build-up. I don't know but every few minutes, I could feel that deep-down muscular "tickling" (or whatever it's called when a person feels the need to stretch) in my left leg that would cause me to have an uncontrollable urge to stretch it.

In fact, It got so bad that I just layed there contorting my left leg and twisting it into all kinds of weird positions but the desire to stretch would only return a few minutes later so I gained only temporary relief. I also tried laying on my side, stomach, back, etc and even just ignoring the desire to stretch but when I'd ignore it, I could feel a "build-up" and then it felt like I would get an intense ticklish charge or "jolt" through my left leg (like it was building up and then releasing on it's own). Sorry, it's kind of difficult to explain.

I don't know if this is some kind of medical condition or not (ie; deep vein thrombosis, restless legs syndrome, etc) but I have have had this deep, muscular "tickling" sensation with the need to constantly stretch my left leg a few times in the recent past only it's never been as bad as it was last night. In fact, it kept me awake for a good hour or more.

A few weeks ago I stubbed/sprained the big toe on my left foot and then even more recently, I stubbed/sprained the same toe again working around the house and outdoors. I'm not sure if this would cause the leg problems I've described because even before I injured my toe, I remember having these leg symptoms (only they were much more mild at the time).

Since I have spent the last 12 years sitting at a computer with very little exercise and because I am concerned about the possibility of deep vein thrombosis, I would like to get tested for this to at least rule it out if at all possable or at least get some kind of test(s) done to see what is going on with my leg because it has become a serious problem for me, it is very uncomfortable and it is now disrupting my sleep.

The other thing I wanted to mention is that ever since I had surgery to repair a damaged tendon in the little finger of my left hand (2-3 months ago), every morning (and throughout the night) my hand goes completely stiff, numb or it aches. When I wake up, my hand is all gnarled (like someone with Palsey) and the joints in my fingers, hand and wrist feel very sore and atrthritic so that I am not even able to move them for several hour upon awakening. A few weeks ago the "pointer" finger on this same hand itched like crazy for about a day and a half and has been numb and arthritic ever since. I don't know what's going on.

I'm also having all kinds of weird visual distortion problems and would be greatful if I could get a referral to see an eye doctor if possable.

Anyway, I don't want to overwhelm you with too many things but these are the most serious and disruptive and anything at all you can do to help me through diagnosis, medication or referrals would be greatly appreciated.

- Warm regards, Tim

------------------------------------------- END OF LETTER TO DOCTOR ------------------------------------------

Well, she was very polite and went over the entire letter with me and immediately looked up at me and told me that I had all of the classic signs of "Restless Legs Syndrome" and as she asked me questions and I told her more, it definately looked like this is what I had. She even read to me from her PDR (Physician's Desk Reference) and I was a "poster child" for this condition - every symptom lined up just perfectly. Anyway, she said there was no cure but there were treatments so now I am on Lorazepam each night and to rule out any other causes, I had a chest X-Ray and a TON of different blood tests. I should get the results back sometime next week. I even asked her if it could be rabies or some other horrible disease and she laughed and said "believe me, you DON'T have rabies and you don't even have any of the symptoms". As far as the pain, numbness and arthritis in my right hand, she said that I had carpal tunnel syndrome with medial nerve entrapment as well as mild entrapment in the ulnar nerve canal.

Anyway, please pray for me and also for this kind, Christian doctor who has been so good to me that God will give her the wisdom to get to the bottom of my ailments/problems. Finally, does anyone else here have this condition (Restless Legs Syndrome), know of anyone who has or perhaps even heard of it? (they say it runs in families).

- Warm regards, Tim

i was real glad to read that you are finding some answers to your problems....hopefully in time this doctor can help you greatly improve the quality of your life.good luck tim!

tim, i'm glad you found someone caring who is hearing you. that's great.

i have restless leg syndrome. it was awful. i couldn't even sit long without moving my legs unless i was sitting on them. i have to kick my legs until i'm asleep. i drive hubby nuts. i take nothing for it. it's something i've done since i can remember. my grandmother, mother and at least one cousin i know have this as well...

it takes some getting used to it, but there are ways to deal. i just voluntarily kick my legs and feet to keep from the sensations. it's works for me. ppl just see me as very nervous...lol. that's true.

gl

kd

Yup...hubby, his sister and mother all have RSL. His sister went to a sleep clinic and when they saw how many kicks she had a night they were surprised she ever got any rest!

They put her on meds for it and she is like a new gal.

Petunia

Hi I am sorry you are experiencing RLS, it is uncomfortable and can ruin many a nights sleep. It is good that your doctor is a caring individual as there are many docs out there that barely give you the time of day let alone some decent medical care.
I am sure you will find many with this problem, I have it but I also have other issues that make my quality life less than it could be. Good Luck and hang onto that good doctor. My thoughts and prayers are with you and those you care for. Linda

I HATE restless leg syndrome, and it's not just at night either! Bummer. I wanted to ask you if your doc suggested you wear a wrist splint to bed? You would be amazed the difference it makes. Over the counter at the local drug store. They have a metal or plastic bar and velcro around your wrist. They were truly great when I had carpal tunnel. aybe it would help?

Yes, Restless Leg Syndrome is a beast ! I have had it for years. I find that a warm "rice bag" (just buy the long cooking kind of rice, but it in an old sock, or use 2 washcloths sewn up and heat it in the microwave), almost always stops mine. I think it is both the weight from the one I use (we have made them in every size imaginable) and the warmth, plus I think it sorta tells my brain not to move my legs cause it will knock the rice bag off.

I have had tunnel ulner (not sure of spelling) syndrome, and slept in a specially formed medium hard gadget they made for me. Within a few months all numbness in my pinkie and ring finger were gone. (The other fingers did not get numb).

Sounds like you have a great Doctor ! Glad she gave you a good check up as well as showed compassion and concern !

It's believed to be a CNS event/disorder. Mine happened to disappear when I increased my medicine for pain.

It seems to happen to me if I have been doing excersize before I go to sleep....It feels so strange....my legs want to run a marathon & my mind & body are exhausted & just wants to lay there. It actually doesn't happen very often which is great because I have problems sleeping anyway.

I have heard of this RLS before but never really paid attention but at least I found out that what I was experiencing had a name & I was classic symptom.

It is kinda funny, but I have noticed that it seems like everything I experience is a symptom for something that has a name if I ask my pdoc...just something I have noticed over the past few months when I have had symptoms that I just didn't understand....it's like my Pdoc has a name for everything I experience.....good to have answers & know I'm not completely unique.

Debbie

An update on my continuing "saga"...

First, I want to express my sincere gratitude to all of you and I am absolutely amazed that so many other people also suffer from this medical malody. The last few nights hav'nt been too bad but I am taking Lorazepam each night before I go to sleep according to my doctor's instructions. I've also gotten away from drinking "hard liquor" and getting drunk almost every day and instead, I just have a few beers when I feel the anxiety reaching a point where it becomes overwhelming. I also found it therapeutic to write my parents and share some of my problems with them. They have been very gracious and even offered to pay my medical bills (which I politely declined but profusely thanked them for).

The chest X-Rays came back yesterday and my doctor caled to say they were normal. She also ordered an absolutley IMMENSE battery of tests (lyme, lupis, etc). I mean, you can't imagine all the things I am being tested for. The results will be in sometimes next week. They drew 8 viles of blood from me. I'm thinking/expecting (as usual) that everything will come back "normal" and of course, that would be great but for once in my life, I'd like to be able to pinpoint my problems and CURE them so I don't ever have to feel this way again.

Even with a Lorazepam in me (including one I took at 4:00AM this morning) my anxiety is still buzzing below the surface and making me feel pretty miserable to say the least - thus the beers I'm drinking now.

Anyway, I guess that's all for now. Take care everyone and I'll let you know what the results are for the bloodwork when it comes in. Thank's again for all the FANTASTIC support!!

- Warm regards, GreyGoose

love you sweetie and want you to be happy!!!!!!!

I can sure understand the feelings of having endless number of test being run on you. When I was in the hospital at the beginning of this year while not eating or taking in much liquids, my GP decided to run all the possible tests that could medically cause anorexia...to the point of $60,000. I never would have thought there were that many possible things that could be tested for that could cause that problem....only found a couple of small things medically that weren't the cause only they added to it or were caused by the mental condition. It is a true fact that our minds mess with our bodies & our bodies mess with our minds....that viscious circle....that usually require help for both sides of the problem.

At times it is frustrating because it seems like it would be easier to fix a physical problem than the complexities of our brains. I hope you get some answers that will help you get through all of things you are dealing with or at least point you in the direction that needs help.

The one thing I realized is that for me, there was never "a quick fix pill" that could fix the mental stuff. It seems to take quite a bit of hard work when it is all said & done.

Take care of yourself....beer isn't a good thing to mix with Lorazepam but relaxation techniques are much healther mentally & physically. Keep us informed & keep thinking positive.....glad you are getting good help.

Debbie

I have decided to start keeping a diary of my symptoms and show it to my doctor next time I go in. Here's what I've got so far...

* Thursday: Drank 4-5 beers in an attempt to relieve the horrible feelings I'm having (RLS, anxiety, yucky feeling all over, etc). That night as I lay in bed, a mild shock-like sensation went across the front of my neck. Very scary. Awoke at 4:00AM, sat at the computer for an hour and finally crawled back into bed.

* Friday: Woke up feeling good and well-rested. Took a long walk, had only one cup of coffee and got a lot done around the house. I had some pretty bad heart palpitations later that day so I took a whole Atenolol (I usually don't take it at all or I just take a 1/2 of one). I also took a Lorazepam because my anxiety was acting up again and later, I had just one beer with my dinner. For the rest of the evening I just did'nt feel right at all. My stomach felt very sensitive (but not nausious), I felt very weak and I had mild chills (but not fever-type chills) come over me every so often. I felt horrible but my temp was normal on the digital thermometer (97.9 just now when I took it).

Just felt like sharing. I have no idea what is causing all of this. I feel like I am slowly dying of something )-:

- GreyGoose