Venting on the attitude of my(soon to be former) Drs.

[ViewsAskew]

The chat room is not functional at present.
I have never used it and am not familiar with the mechanics of it but I think it has a lot to do with having a registered member with the time to actually commit to hosting it on a regular basis.
Perhaps Views will correct me in this if necessary

I honestly don't even know where you found the link to the chat room!

There was a module installed here, but when our Chat Room moderator left (too busy), it just fell to the wayside. I just searched and didn't find it - I know I asked someone before where they found it, lol, and I've forgotten the answer!

[rthom]

I went there a few times in dec or jan and offered to help with the moderating but also found it off for a period of time. I also got a message saying that about 8 is the best time--watched it for about a week or 2 then just haven\t bothered with it. But it seems to have been off for a while now.

[Polar Bear]

Ann, I went to the RLS Foundation Homepage and the 'chat room' is listed under 'Connect with Others'. I logged onto it ok, but of course there is no activity, and hasn't been for perhaps a couple of years.

[cmooreinthepines]

I was born in 1964, and my parents loved the Beatles...thier music was the sound track of my life growing up. There is a radio program here every Sunday morning that we listen to called "Breakfast with the Beatles" My family never misses it. We make breakfast and dance, sing and smile. Wondering if you could hear the music when you were at the show or were you one of the screaming girls? LOL. That must have been really something to experience. Ringo and his all stars and also Paul come to Atlantic City every now and then...I keep hinting to my husband but tickets are several hundred bucks a piece and he thinks that would be such a waste of money! MEN. I have all the albums and films, Randy tells me to watch a video if I want to see them.

Went to bed here around 9PM...back up at 2AM. Its a pattern for me no matter when I go to sleep, I am down about 5 hrs, even with the meds. Now I will be up for a few hours and then go back down until I have to get up and start the day. I am feeling a calm over me..because I have some resolve in so many areas of my life..it's refreshing. (I hope it lasts)

I have to go to work tomorrow, just for a few minutes for paperwork. Hoping I look fresh and awake. I will avoid most of my coworkers because of the drama they love so much. Not looking forward to returning. I have made a decision that I will not quit. They are going to have to fire me if they are not happy with me. See if they fire me, I would be entitled to benefits such as unemployment compensation and job training, where if I quit, I get nothing for 6 weeks at least. I have paid into the system since I was 16 and never took a dime. So...I am going to stick it out and have hope that I can get my health under control and maybe..maybe I'll be okay. Maybe I won't and I will have to take another path. Either way thats okay and I will be alright. I am even okay with the possibility I may have to apply for disability. I am not a slacker, I've worked since I was 16 years old, when you legally can start in NJ. I would rather work but I am aware that I may have to stop.

Just wondering, has anyone out there had there driver's license revoked because of WED? Or maybe you recognized that you had to give it up? I read a post somewhere here that someone hit a tree or a telephone pole a a few houses away from thier home because thet fell asleep and luckily no one was hurt, I think that was it. I live out in the sticks here and that would definatly add a burden on my Husband to have to drive me everywhere. My daughter will be able to drive soon but then she will be off to college in a few years. Just wondering if anyone would care to share concerns or experiences?

You know, that psychologist said alot of things to me about my mental state. But he dosen't know me well enough to really judge me. This is me talking calm and relaxed. No Panic or tears. It feels so good to not be confused...my memory is still for $hit though. Thinking of going back to bed. Hope you all have a good night, and if not, know I am thinking of you and wishing you better nights, Hugs, Cheryl

[Polar Bear]

I can't imagine that anyone would lose their driving licence because of WED.

But perhaps if the side affect of a particular medication caused an unacceptable issue, that could shed a different light on the matter.

On the matter of the Beatles.... Paul McCartney sang (I use the word very loosely) at the closing ceremony of the Olympics and unfortunately it was pretty awful. He'd be better sticking ing to song writing.

Hope you got some more sleep and if not then just ''' twist and shout''''' :lo l:

[ViewsAskew]

Ah - the chat on the Foundation's site. I thought you might have meant here - on the message board.

Here's the history - for what it's worth. There was a chat module here on the message board. We had a scheduled chat and a chat moderator. The moderator couldn't do it anymore because of conflicting responsibilities. Once she stopped announcing the times and being there, it stopped being used. The one here got disabled when we upgraded the message board.

There was also one (still is) on the Foundation's site. The moderators here are all volunteers and we don't have much knowledge of what happens on the main website, so when it comes up here, I always think of the one that was here and doesn't exist anymore, rather than the one there.

Since the chat module is on the rls.org site and it works, members here are welcome to use the message board as a place to schedule times to talk there. If people start showing up at a regular time there, eventually the word will get out, I'd guess.

I suggest starting a thread saying you'll be there at a certain time/date. I imagine others will join in. Anyone can do this. I'm not much of a chatter, so didn't participate before. I honestly don't know how many people did, but think it was a good sized group.

[dogeyed]

Cheryl, glad your physical and mental are starting to level out. My computer was down until yesterday, so just now caught up on your news. I'm very pleased you have that Neurology Institute place to go to! I really hope it works out.

Polar Bear, dah'lin, I saw the Beatles in Baltimore in about 1964, I also was still in school. Then I saw them at Shea Stadium in NYC, Mom took me and a couple friends, I was in my terrible teens and a completely rude person, but eventually I worked on newspapers as a writer and editor, and in my weekly column I was able to publically thank her. Well, towards the end of my working life, I met a young lady who was a Beatles fan, and she had this fab poster of the stadium, it was taken in wide angle and simply said "Shea" as a title. I gave her some of my souvenirs, but kept back a couple items, altho her poster... what I would have given for that thing, but even that was a long time ago.

Guess I can add this, just a bit on my own RLS situation. For so many years, I did good with my meds controlling symptoms. But had cancer last year, and lo and behold, it broke thru, and even tho treatments ended many months ago, my legs are still jumping around on occasion, usually when I'm on them too long. Fortunately, I see my neurologist in September, and he already knows I'm needing higher dose this time of a couple of my drugs that he prescribes, so that should once again straighten it out. Bye for now! GG

[Polar Bear]

So glad you have a September appointment, and great that your neurologist is already aware of the need for an adjustment.
Hang in there......

[cmooreinthepines]

Really struggling to keep it together.

[cmooreinthepines]

Feeling like all I do is whine about how $h1TTy I feel. How this is no kind of life. Telling my husband how I have thoughts of being done. I have been looking at photos of my self from about 5 years ago. I am startled by the difference. Where once I was such a giving of heart kind of person and tried to always be there for others, even at the expense of my self...I just don't have it any more. I am angry, frustrated and I can't hide it anymore except to not let anyone see me. I was a very social person, now I find myself without friends..no one is calling to see how I am or can we get together. It might just be coincidence but i thnk they see the pain and suffering in me and they just stay away because I look "off" and as much as I have tried to keep my mouth closed I think I have done some damage to myself in that way so I stay away as well.

I've moved all my "crafty bits" out of the room with my PC...I had no desire to get any work done looking at my messy desk covered with RLS info. It kind of put a hex on my creativity. Moving a spare bed in its place, just in case. Feels so hopeless at times. The days just tick away waiting for an appointment.

I have an appointment to see that "former GP" tonight. My husband is going with me. He ordered the Blood Ferritin Serum test... came back at 60. Also had MRI done on my spine so he should have that report as well. Last week I dropped off all kinds of materials for him to look at on RLS along with a loan of my little green clinical book by Dr. B. He will probably not even look at it. Not sure how I am going to convince him that I need Iron or any thing else for that matter. Perhaps when he sees me pacing the waiting room like a caged animal because I can't sit still? Not ready to let go completely because so far he will still see me while I wait for someone better.

Some days its so hard to just get myself up and a shower. I have my curtains and shades closed. I can be found awake most nights from about 8 or 9 on till dawn then with any luck around 6 or 7am I can drift off to sleep maybe every other day. Yesterday marked the end of my vicodens and I tried to get as much sleep as I could. I don't leave the house or talk on the phone except to immeadiate family.

Why does this have to be so hard. Its just insane for a Dr to diagnose me with a disease and then...treat me like I am crazy when the disease or the meds manifest symptoms of depression..but he forgets all about the disease. He will discuss anyhting else but RLS, it seems. How was I supposed to know that this was going to effect my body and mind for the rest of my life? It has certainly ruled my existence for the last 3 - 4 years. I assumed a neurologist would have a better working knowledge of this disease than a GP...HA! He looked at me as if I was the first case of RLS that he has ever seen that exhibited any mental problems as a result of disease or meds...actually thats exactly what he said. Which blows my mind...all anyone has to do is search RLS, wade through those home remedy adds and there it is. I know I sound like a broken record...hitting highs and lows..can't seem to wrap my brain around the simplest tasks let alone make sense of all this. Thinking of asking GP what would he do if his wife or daughter walked in my shoes?

Well...I am tearfully hanging in. Tried so hard to find other things to talk about here...Love those Legos, buttons, Beatles and plants....so much creativity, soul and nurturing. As soon as I read those posts I felt a kinship beyond disease. Even though we have never met, I feel as though I have a few friends who care and you are awesome people.

Enough for today. Gonna hit the shower, get dressed and step outside just to feel the fresh air and sunshine so I don't feel so much like a vampire. Hope you are having a good day..and if not, know I am thinking of you and hoping for better days for you. Cheryl

[Polar Bear]

Cheryl, it's my understanding that with rls/wed there comes a higher rate of the risk of depression. And how can it be otherwise. Reading your post shows how we not only cope with the symptoms of the disease but along with that is the lack of sleep. Its very difficult to find the enthusiasm that we all used to have.

However, sorting medication and finding what works for you will go a long way to dusting off the malaise. It is not always an easy road and sometimes it takes a wee while to find the best medication.

Ferritin at 60 isn't too bad. Not so long ago it was 50 that we aimed for, and then more recently it was decided that 100 was a better target.

You have asked in another thread regarding a reliable printed source of information on ferritin serum levels.
Recently, just a few days ago, I googled this subject and found some links which were posted as a response to rthom.

But I think that the target of 100 for ferritin serum level has come about from the experience of sufferers. It seems that the higher your
ferritin serum level, the better chance you have of avoiding augmentation when taking the like of requip and mirapex.

[ViewsAskew]

Cheryl - increasing your ferritin may not help you or it might. Here's what they know.

1. Iron is involved in WED, but not exactly sure how.
2. Taking iron - whether a transfusion or by tablet - doesn't always mean an improvement. When given iron infusions in one study several years ago, 20% had remission of WED symptoms, 40% had reduced symptoms, and 40% had no change.
3. Augmentation is more likely when you have low serum ferritin - but people with high serum ferritin can still augment.
4. If augmented, the only solution I know of is to stop the offending drug completely. You can then increase your ferritin and try it again later, but it may not make a difference.
5. Once you've augmented severely or on two or more DAs, there is a good chance you'll never be able to take a dopamine agonist again.
6. The doctors say that when you stop the drug that caused the augmentation, you will revert to your prior level of WED unless you also had natural progression during that time. Several of us here would argue with that, but we certainly can't prove it. Could be we're wrong, could be that medical research hasn't identified what caused our problem.

I absolutely echo Polar Bear's post. There isn't an easy fix and so many things are tangled up together. I've thought I've had the answer only to find I didn't. But, in the end, sorting out my meds was essential. For me, stopping the Mirapex was a huge part of the solution. Sure, getting my iron up may have helped, so did increasing my D. But, that drug was like a poison in my system. The problem is that it may be different for you. Just like serum ferritin - some people get it higher and their WED completely goes away! Others? No effect at all. I had to have a doctor that was willing to try different things, and I had to let go of some preconceptions and try things that I didn't want to. I still don't have a perfect solution - I don't think one exists - but I like life, my husband, and the world for the first time in many years.

I had to fight tooth and nail to get the right doctors to treat me. When I had no work and was in debt, I had to spend money I didn't have to go see Dr Buchfuhrer. Without that? Not sure I'd be talking to all of you now. I had to have some hope and someone who was not only smart about WED and treatment options, but who believed me. You need the same.

[cmooreinthepines]

Thank you : ) GP told me to eat red meat at least 3 X per week to increase iron and find someone who knows about WED. I would have been very happy to take this advice 4 years ago. Soooo frustrated. Working it out. Have a good night and I will try to do the same. Need to try and shut it down. Haven't slept for a few days and I am hoping I am so exhausted that it will be easy...LOL.

[dogeyed]

CMOORE, may sleep, blessed sleep, visit you soon, so you can feel like a partly regular person again. I can't understand how come the opiate worked for such a short while for you. Less is more on that issue, so smaller regular dosing with what you have left might work.

I remember when I had untreated RLS, which is basically what the docs have done to you (those cads), I near 'bout went around the bend, and I think I mentioned this before, but a nice lady came on here a number of years ago, wanting to find out more about RLS, because it drove her husband crazy and he wound up in an institution, felt so sorry for them, so it most definitely is a possibility, altho rare. But the point is, if you've got this intense muscle seizing thing going on, and for me it's painful, it's like your body is on high alert all the dang time, you cannot sleep enough, it distracts you from fun things, and it just won't stop by itself! Basically when the really bad days drive you up a wall and everything loses its color, you can remember that eventually it will stop because you will sleep, and also that it's just the RLS making you this way, and there are natural teas to calm you, and I really like to take an iron pill every now and then, it always lifts my mood.

And closing the curtains, hey, I've been there and go there regularly, in fact. Same thing as you, right down the line, don't like those showers when I'm in a mood, everything appears rather ugly, it's like babysitting a wildcat for three days in a row or something! Ha! It won't let you go!!! I remember when I first came to this forum, I'd say, "I want to shoot my legs." Yup. That was it, in a nutshell.

Well, eventually you WILL pass out, even a short rest will help. In the meantime, you do have some appointments left to go, some little bits of medicine to go, and there's always someone here to talk about it. So, may sleep, blessed sleep, visit you soon. GG

[Chipmunk]

Thank you : ) GP told me to eat red meat at least 3 X per week to increase iron and find someone who knows about WED. I would have been very happy to take this advice 4 years ago. Soooo frustrated. Working it out. Have a good night and I will try to do the same. Need to try and shut it down. Haven't slept for a few days and I am hoping I am so exhausted that it will be easy...LOL.

This may work for you, but if it doesn't, here's what my sleep doctor told me:

*Trying to eat iron-rich food is likely to not raise my iron levels much because if I were a good absorber of iron I wouldn't have low iron to begin with.

*Iron cannot be taken with calcium, magnesium, tea or coffee, greens, whole grains, or nuts (see: http://www.livestrong.com/article/537866-what-foods-to-avoid-when-taking-iron-pills/)

*It should be taken with Vitamin C (ascorbic acid) to maximize absorption.

What I did when I was supplementing with iron was to take it first thing in the morning with orange juice and a vitamin c tablet. I took my multivitamin, calcium/magnesium/zinc, and Vitamin D in the late afternoon or evening.

The iron will bother your stomach in the beginning, but I found after about a week or two of regular supplementation, my tummy settled down. I also made sure to eat lots of high-fiber foods (spaced out at least two hours after my iron dose) and that helped as well.