Very Depressed

[ladybug]

Hi & I'm so thankful I found this site. I am also new here.

I'm very depressed to read everyone's posts. I've had RLS (although never diagnosed) for years & it seems I really noticed it when I got on Lexapro for a time over 10 yrs ago when I was going thru some life's crisis. I'm not taking anything now except for Ambien for my sleep problems. I have also had jittery legs all my life.

My mother is in the last stages of Parkinson's Disease & I recognize all those pills you all talk about. It really scares me that I'm going to get PD. My RLS has been really bad lately & my dr hasn't been able to diagnose it. My doctor tells me that there is nothing wrong with my legs..but in all honesty, I've also had back pain & have been worried about other illnesses also. My dr's done bloodwork, an ultrasound of my abdomen & x-rayed my back.

I think the pain & creepiness in my legs is driving my crazy. I feel like dying sometimes... then I'm full of fear that I am dying. I've been flying a lot this year & wonder if sitting on a plane so much is contributing to the RLS.

I'm thinking about going to a neurologist to have this treated..but it doesn't look like there is a definitive diagnostic test. I'm so tired to being treated like I'm imagining all this...I have made an appointment to see a psychologist because I have also been feeling very depressed & anxious lately.

Does anyone know if RLS is a precursor to PD????? I'm so afraid!

Sorry for sounding so depressed. I will get help...it's just so hard sometimes.

[ctravel12]

Hi Ladybug and welcome to this site. I am so sorry to hear what you are going through and so sorry to hear about your mom having Parkinson's disease.

The dr that you are going to now does he have any knowledge of rls? Also you had mentioned that you are thinking of seeing a neurologist.

This forum you are on now please read the sticky post "Managing RLS" as there is alot of good info to read and also there is an excellent article from the Mayo Clinic Algorithm. Please read it and also make a copy for your dr or for the neurologist that you may want to see. It is important for them to read this.

I am going to give you two more sites to read. www.rlshelp.org and www.wemove.org

Have you had ferritin level (iron deficiency) checked? It should be around 50 or higher. This b/w you have to request as it not included on your normal blood work routine.

I know that when you are at rest is when the rls starts up. When you get up and move around it goes away. I know this is a weird disorder.

You asked if RLS is precursor to PD. That I cannot answer. I would ask your dr that question.

Please never apologize for how you feel. We are here for you. We are not drs nor have any medical advise but we are a wonderful support group.

Below my signature is a link to the chat line. I am the chat hostess and we get on every Monday night at 6 pm Arizona time. Not quite sure if you are either two or three hours ahead of my time, but would love to have you join us.

Please keep us posted on what your dr says. If you have a good rapport with your dr that is great. In that way you can read as much as you can about rls and educate your dr.

[ladybug]

Thanks Charlene, I will try to be on on Monday...will be good for me to listen to other people's story. I have felt very lonely lately & am tired of being "sick".

My printer is burning up from making copies of all the reference materials in the sticky section. Thanks to all of you for making this information available. Now I just need to find a doctor who will take my complaints seriously.

[Hos]

Hang in there! We can all relate, more then you may know. I've read that there is no proof that RLS can lead to PD so that's ONE less thing to worry about!

Good luck finding a neurologist, that seems to be what you need since you're dr doesn't know about RLS and how to treat your other health problems. There are medicines out there, like maybe Mirapex, that may help. It's just a manner of finding a dr who will work with you until you find out what works for you and what doesn't.

Here's another good place to start, the rls algorithm which shows the meds to try out and best order to do so:
http://www.mayoclinicproceedings.com/in ... ef=7907crc

If you have a headset, or can buy one for $15.00, and can download a free program, we meet every Thur. if you want to talk too. See my sig for how to set it up!

[sardsy75]

Hi LB

Welcome to the group; sorry it's under such circumstances.

My heart goes out to you and your mom. My maternal Grandmother has advanced parkinsons. My maternal Grandfather had chronic RLS but passed away not knowing what it was that kept him awake night after night pacing the house.

So far, from what i've read around the place, RLS is NOT a precursor to Parkinsons.

There is a plethora of information on this site that will be useful to both you and your doctor. Yes, it would probably be beneficial for you to visit a neurologist to get a definitive diagnosis.

We're a family here and newcomers are always welcome. Scream, shout, cry, vent, ask questions, get whatever it is off your chest ... it's all allowed here and no-one will judge you because we understand.

(((((Hugs))))) to you

[ViewsAskew]

Hi Ladybug,

Absolutely, no way, no how! There is no connection between having RLS and getting PD. The drugs are only the same because similar chemicals in the brain are affected. It's actually the other way around...if you get PD, you are much more likely to get RLS.

I hope you find a great person to talk to. I haven't use a psychologist yet, but wouldn't hesitate to if I needed to. I do know, however, that they can be very, very different, so it's a great idea to find out how they want to work with you before you commit. They follow different theories on how the brain works and some theories work better with different problems and with different people.

Per the RLS doc, you have several choices. A neurologist is likely to know about RLS. A sleep doctor is, too. But, many PCPs do, too. And, any doctor who is a compassionate doctor and who communicates well is worth keeping and educating. All those things you printed? You can give some to the doctor to help him or her learn as you are.

You can also buy yourself, or your doctor, one of several books on RLS. For the doctor, The Clinical Management of RLS by Hening, Buchfurer, and Lee is great. For yourself or your doctor, Restless Legs Syndrome by Buchfurer, Hening and Kushida is great. For ways to fight RLS without drugs, The RLS Rebel by Gunzler is fantastic.

Glad you found us. I hope that you find what you need here and that this is the start of feeling much better and much less afraid.

[ladybug]

I'm humbled by everyone's concern...thank you.

I have another question or 2 that maybe you can help me with...
When you start on medication that is used for RLS as well as for PD...do you experience hallucinations? Can you drive a car? Generally, how is the quality of life? Can you live a normal life with a few minor adjustments?

I can't tell you how much hope your forum is giving me...the hardest part of the past few months has been losing hope for ever having a normal life again & thinking that I was losing my mind!!

[ctravel12]

I'm humbled by everyone's concern...thank you.

I have another question or 2 that maybe you can help me with...
When you start on medication that is used for RLS as well as for PD...do you experience hallucinations? Can you drive a car? Generally, how is the quality of life? Can you live a normal life with a few minor adjustments?

I can't tell you how much hope your forum is giving me...the hardest part of the past few months has been losing hope for ever having a normal life again & thinking that I was losing my mind!!

Hi Ladybug and welcome again. Two years ago I took Requip and did not have hallucinations; however it did not agree with me. I am now taking Mirapex and do not have hallucinations.

Of course that is how the meds do for me. I am sure if other members have had hallucinations, I am sure they will post.

One thing to remember is what works for one may not work for another. Please try not to stress over this as that will definitely trigger the rls. I know it is easier said then done.

You are willing to learn about this disorder and that is great. Like I said read as much as you can. Educating yourself is a definite plus.

One other thing I want to mention is that when you find a dr please make sure he is willing to work with you and above all listen to you.

I am fortunate as I have a neurologist that will listen and work with me (he also has rls) and with that he does have empathy for others.

I hope that info that I gave you and the other members have been alot of help to you.

[Polar Bear]

Hi Ladybug, I welcome you to the site, but I'm very sorry that you needed to find us.

I use ropinerole with success, tho I need a sleep aid also (Ambien). I also use on occasion low dose codeine. I don't think I have any side issues from the ropinerole (requip). I do have other recent health issues and I am awaiting tests but don't think it is anything to do with any medications that I am taking.

Good luck.

[sardsy75]

Hi LB

As with ALL medications, each person reacts to each medication differently. It's the same with RLS meds. It will take a little while for your body to adjust to anything new you start to take.

Yes, a lot of our medications come with those fluro warning labels regarding driving and alcohol etc etc, but that's the pharmacies and drug companies covering their butts.

No, i probably shouldn't drive some days; but I have no choice. Yes, I get some really funky dreams and hallucinations some nights too. Just depends on the day and how I'm doing. Actually, I shudn't drive period; but that would leave me high n dry.

As for quality of life, what you put into your life is what you'll get back out of it. Do not let RLS define who you are. You are you. If you had a really active social life before all of this, there is nothing stopping you from going back to that, it just might not be so jam-packed is all, and might take a while. It is your nearest and dearest who you will need to rely on during this.

It's taken me over four years to find a medical cocktail that works for me and ergo, my social life went down the tube pretty fast. Yes, I lost a LOT of friends who did not understand or did not want to understand what I was going through (unfortunately that includes a now ex-husband).

There are however, the handful of wonderful friends who have stuck by me ... including my wonderful partner; who dont even batter an eyelid when I suddenly disappear at a rather fast pace or go hunting in my handbag frantically searching for my backup meds. They know whats going on and it doesn't bother them. They know it'll take anywhere between an hour to a dozen hours for me to get my RLS back under control; yet, we still have a great time.

So, basically, yes you can drive a car, live a normal life ... with a few adjustments. It's those around you who will have to get used to those adjustments.

Take care of you

[Polar Bear]

Hi again Ladybug

I endorse all that Sardsy says. Absolutely, you have to keep up the social life and the contacts and don't hide the fact that you have a condition that needs to be managed. My friends know that I get the aisle seat at the movies so I can wiggle my legs and/or go out the the foyer for a walkabout if necessary.

On Saturday afternoon past, while with a few other wives watching our hubbies playing one of the last bowls matches of the season, I had to get up and do stretches. I used a steel supporting pole at the pavilion for support and the comment was, hmmm... legs on the go again ??? see you're pole dancing again!!

It doesn't matter where I am, if I need to get up or move, I do so. I don't let that bit of it be a problem.

Good luck

[becat]

Hi Ladybug,

Hope my dear, it lives here in every post you read. I know there are some hard stories here, it's not an easy disorder/illness/whatever you want to call it, but it is doable.

I think many of us have been in that boat, as one of our members here once said: floating in the middle of the ocean and no land in sight. I bet you feel as though you have lost your oars as well. I know I did and have many times, but I know that hope lives and is real.

I second what PB, Sardys, and everyone have said.

Your doc simply is not educated enough on this subject.....as it sounds like he could have given you a diagnosis some years ago, if he had known.

Quality of Life is what this can come down to. I had a horrible one until I found a doc that was willing to partner with me and truly understood RLS.
I was lucky to have had one close to my city and even luckier, that he had already been involved with the Foundation and it's research.

I know what it is like to have painful RLS, I've done it all of my life. At the age of 30 it went somewhere that I could not handle by myself. I needed help and it took me years to find it.
But I'm here now or still and I know that you can get the right help, so that you have a great Quality of Life.

Like the others, we never like to hear about anyone's family suffering from PD, but the doses that your mother would likely take, would not be near what you would take.......if your doc and you decided to start medications.

When you are having to deal with little to no sleep, your eyes are not yours. How you see the world is changed. Sleep is what helps us get on with life some days, gives us new eyes on the world.
Chronic pain just simply changes a person. Like Sardys I have lost friend to RLS and their own misunderstanding of how I really live my life. Or how I can live it.
Pain is so difficult to manage without help. And I would rather see a doc and get help for that then, try to discuss or wish it away. Your not making RLS up, it's your body doing this.

By no means did you do something to deserve this lifestyle. By no means did you wish for this. And if you want to seek some help and advice from a therapist, do so, but with a medical doc helping you as well. I have often thought about seeing someone as well, but this board has done more for me than I could have ever wished for.

There is a support group leader in LA and below will be a link for that person.
http://www.rls.org/Page.aspx?pid=514

You can call and ask for a reference in your area and hopefully there is a good knowledgeable doc in your area. If not, docs CAN LEARN NEW TRICKS!!!!!

Yes, it might be a bit of trial and error for a bit, with the medications, if you need them. However, its a normal thing for many of us. 88% do well with one thing for yrs, and then there are some of us that need to tweek it every so often.

We'll be here and promise to support you and your education....even the education of your doctor.

Hope lives and in this boat (our board here) we take turns rowing for one another. Let us row for a bit and know your not alone and we do care.

Welcome and live with hope in those tired eyes. Don't give up, there is great hope and tons of help.

Lynne

PS, flying is hard on me, as well. It takes about 2-3 days for a quick round trip, to recover totally. Weather hurts me as well.

[ladybug]

Thank you all for your replies. My brain is bursting from all this information.....knowledge has been truly a gift to me!!

My doctor's office called today & will do a blood check for iron deficiencies (something I read on your site somewhere). He is also sending me to a sleep specialist..not sure what to expect there but want to get to the bottom of this.

I did take a ropinrole last night plus an ambien pill...and actually got some sleep...I was so exhausted. My state of mind is much better today. Now my dr tells me to lay off the ropinrole for now (I guess I sounded rather hysterical yesterday morning).

I am seeing a therapist on Thursday because I'm pretty sure I've been having panic attacks....the big one having to do with my rls problems & flying across the Atlantic (which turned out to be pretty public in my circle of "friends" & now we have to explain to everyone that i'm out of control - which I was trying to keep a secret...heh, heh). There are other issues which I won't go into but complicates life & adds up on one's emotional well-being.

So the question then becomes did my stress cause rls or did the rls cause stress?? It's all related somehow but not sure how. I do know that I had problems with rls for over 10 years...mentioned to a dr long ago that I thought the sentraline had something to do with it & got off it then. I've spent many nights pacing the floors trying not to wake my husband..but unable to control my restless legs.

Don't mean to ramble on so long. Thank for for being there when I had spiraled down into the deep dark recesses of my soul. You were a light to help me find direction!

Maybe one day I can help someone else who is going thru this fire. I can't wait to get this under control & move on with life.

[becat]

Hey Miss LB,

Wished I had made it to chat earlier last night, but was so glad you logged on.

Yes, I think many of us "hide" what our lives at home can be like. I hope your friends get it better than mine did. But it is hard for so many people to believe that you don't sleep and "your legs" can cause you so much torment.

If it helps, the docs can really help you with the flight. Ask all they can say is no, right? I went to London last yr. and did fine, but was totally medicated. Thankfully, my hubby sat next to me so that I drooled on him, LOL. However, I understand the panic of the trip, but there should be no need, it's very doable.

My doc has finally come around about weather and plane/car trips. He just knows that its going to take me a day or so to recover without the help, so he helps.

I do make certain that I am careful to let them know when I travel, every time.

BTW, you can ramble all you want, we all do at some time or another, and certainly did when we were new here. We learn best from one another, so what you say might just jog someone else into a thought pattern they never expected. So no more worries about that.

The sleep doc maybe a great choice for you, I go to one and have done really well with him, after we established a relationship. Taking my hubby to an appt. helped more than anything. He backed up my story and he asked his own questions. It helps in my opinion to have your spouse or partner, someone you live with, with you.

Hope today is even better than you thought it would be.
Lynne

[ladybug]

Ok...guess I'm not through with the questions...

I'm having my iron level checked on Monday...should I make sure that its for ferritin?...i never knew there were different types of iron level checks.

If my levels come out normal - does that mean I don't have RLS?

Thanks everyone!!!! I really had so much fun on Monday night's chat. I don't know how I got to be so blessed!!