Call for help

[Tlgreg60]

Hello, my name is Tammy and I am very NEW to this site. I am coming very broken, discourages and frustrated with a strong sense of fear and confusion. I was diagnosed years ago with RLS but have been on the prescription bandwagon. I suppose all the while having every type of drug thrown at me and adding other issues on top of the exisiting. Recently, my doctor put me on Fluoxetine, diazapan, clonipin, neupro patch, tramodal for pain. I told my husband I felt like I was dying and some days wish I would (this by the way pains me to say and teary now sharing this). I am exhausted. My ferritin is 40. My vitamin D is 30. I went to a naturalpathy the other day spending LOts OF MONEY on supplements only to go to a website to see that L Gluatimine should not not be used because RSL suffers have glutamate issues. Also, calcium. I feel like I am on a carnival ride and can't get off. In fact, my dreams are of a rescuing nature and someone trying to get me. I am hopeless. My marriage is suffering after all these years and now compound time of life women issues. I have tried every single RLS drug out there and I Do have side effects. I am increasingly becoming afraid of all medications and even food as well as life. I am afraid to walk because that night my feet hurt SO bad and that is an issue. I just read where gluten and casein are big NO Nos. The very food I eat is wrong. My poor dad suffered horribly with this. So does my Aunt and many cousins. I even have this in my left lower tooth beds and dentist pulled three beautiful teeth thinking I had root issues. 12,000 later I still don't have teeth. I honestly don't know where to turn, where to go how to get there and who to see when I get there. I live in Alabama and there is no support groups. I feel I am in a crisis place. I feel desperate. I have taken myself off ALL drugs and I thought I was going to lose my ever lovin' mind. I am hopeless.... I have lost just about everything and probably will at this rate. Its consuming my life.

[Rustsmith]

Tammy, there is so much to say here that I am positive that others are going to add things that I have missed.

First, that is a LOT of medications. How confident are you that your doctor is familiar with treating RLS/WED? This list strikes me that he is experimenting trying to address all of your issues and may not have an in depth understanding of RLS/WED. As bad as you sound, you may need to see one of the RLS/WED experts. I know that there is one in Atlanta, so if it is possible for you to get there, one of our other members can tell you his name.

Next, the first thing that I see is that fluoxetine (Prozac) is an SSRI used to treat depression. SSRIs are known bad actors when it comes to RLS/WED and could be making your RLS/WED a lot worse. Unfortunately, there are not really any effective antidepressants that do not cause problems. The recommendations from the RLS/WED experts is that you need to make a decision as to which is worse, the depression or the RLS/WED because it is going to be difficult to effectively treat both.

What are you doing to address your low ferritin number? Because you are currently on Neupro, that value needs to be at least as high as 100. If you have been taking iron sulfate regularly for a number of months, then you may be a candidate for an iron infusion. Once again, this requires some expertise from your doctor to get it right.

Take a look at our forum on relationships. Don't expect to find any groundbreaking truths that will immediately change your life. But you can expect to find that you are not alone in this and that others have had many of these same issues. Sometimes just knowing that you the first to go through this can be helpful. And PLEASE, if you feel like venting or simply getting the emotions off your chest, you MUST post a note so that we can sympathize at the very least and better yet, offer suggestions.

Finally, I offer one of the RLS Foundations slogans from last year, "You are not alone". Not only are your problems more commonplace than you expect, but there are a number of us who are here to help.

[Tlgreg60]

Hi steve. Thank you so very much. Its been a really bad few days. I just took .5 valium to help sleep with my natural meds. Which are: L Theanine, magnesium glycite, calcium, vitamin c, vitamin d, iron supplement. I STOPPED ALL medications a few weeks ago including the nepro patch. That really messed me with me bad. I detoxed Saturday night and thought I was going to pass out I was so sick after the detox. I have tried every single RLS med on the market over the years and react to every single one of them. The only success I have is diazapan but became worried I was going to get addicted because I read so many things on line and it scared me. I watched my poor dad struggle all my life with this. He took everything. Ultimately, the aneurysm took his life but he had pace maker, quad bi pass and many vein removal issues. I seem to be following in his family path. the neupro was so bad that it swelled my ankle and blew a vein, now I need to get removed as I am in immense pain. I really feel so frustrated and caught in such a circle. I am alone most of the time as I am afraid of over exerting my feet. It makes my night worse. My friend is coming from Illinois and I am cringing. I am excited to see her but worried about my quality of life during her visit. I just made an appointment at Mayo clinic in Florida. They can't see me until July 21. Do you Atlanta could see me sooner? I read online that glutamate is an issue and so is gluten and casin (milk) in which I was eating both. My poor husband is concerned and so am I. I think I have had pills thrown at me for literally years and misdiagnosed. Yes, I have been seen muiltiple times with digestive issues only to find that RLS is affliliated with that. My brain actually hurts. I am so happy to found this site but hope I don't wear anyone out. I am really a work in progress and trying to learn how to live with this as it gets worse. I don't experience any happiness in my life and afraid of being alone. I don't know who I am anymore. This weekend is a big event in Nashville and want to go so bad but am afraid of the pain afterwards. Suggestions on Atlanta are appreciated. Thank you for being here on my crazy journey. Tammy

[Polar Bear]

Hi Tammy,
I am so sorry that you are suffering so badly and agree that it would help you so much to see a good RLS/WED expert.
The only way to know if another clinic can see you sooner would be to check with them.
Who are you seeing at the Mayo Clinic in Florida? It might be good to have an appointment with a specific consultant whose name would be recognised by one of our members be it in Florida or with another recommended consultant/clinic.

Steve has given you such good information and it does indeed sound like your GP needs some guidance.

You may already have seen here on the discussion board where I have mentioned this book, it is easy to read and can be used for discussion purposes with your GP. It sounds like he would benefit from the information therein at any future appointments you may have with him.
Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening. Make sure to get the second edition. These Authors are at the top of the league when it comes to the treatment of WED/RLS. It can be found on Amazon.

One of the authors, Dr Buchfuhrer, takes appointments at his Clinic in California, which I appreciate is very far away from you.

I applaud that you got yourself off medications. Are you taking nothing for your RLS/WED symptoms - apart from the .5 valium you mentioned.
If you are unmedicated at present it is likely give a good base from where to start a new treatment path.

You have mentioned foods that you should not be eating... .... thing is, we all have different triggers and are affected differently by different foods and/or medication interaction, so (this is only my opinion) don't be too alarmed about what you do/don't eat at present. Although it's certainly best to avoid coffee and alcohol. Sugar and artificial sweetner is also a common trigger. First thing you need is good medical advice and treatment guidance from an expert.

You are feeling so unwell that it is hard to feel you will manage when your friend visits, I would just be honest with her and with her understanding both of you will make the best of your time together.

Many of our members have felt as you do and we feel there is always something else to try, a new combination - with the help of a doctor/consultant who understands the disease.

[Tlgreg60]

Hi! Honestly hearing from you both is my saving grace right now. I'm bottomed out!! I take lots of supplements snd half if 5 milligrams diazepam. I said it wrong earlier. I seem to drop things can't speak coherently off my game. I used to work in executive space so I'm not dealing well. I appreciate all your messages and the hope you are providing me. You ibvioysly know being at the edge. I'm there.!!! Not suicidal. But hopeless. Atlanta is not far and would consider going there if they are top docs. Believe me I can and will go to wherever is the best. I live in Alabama. So everything is travel. We are from Illinois. Thanks for kudos on meds. It was ROUGH getting off all.

[Rustsmith]

Tammy, I searched back through some of the old discussions. The doctor in Atlanta is Dr. David Rye at Emory University. The Emory Healthcare number is 800-75-EMORY. I have no idea when you might be able to get into see him. This time last year I fired both of the doctors who were "treating" my RLS and called to ask for an appointment with a research doctor in Houston the University of Texas Medical School. The receptionist laughed when I told her who I wanted to see and then explained that she had just had a new patient cancellation for late July and would I like it. Of course I said YES!

So, as Polar Bear said, you only need to call and ask. Sometimes it really does work out for the best.

You said that you have been through all of the RLS medications. You mentioned the various dopamine drugs. Have you tried the alpha-2-delta drugs (gabapentin, pregabalin/Lyrica and Horizant) or have you used any of the opiates for your RLS?

[Polar Bear]

Rustsmith - Great Post

Tammy - good luck.

[Orrel]

There is a neurologist in Atlanta, Dr.Lynn Mari Trotti, who I believe works with
Dr. Rye. Although I don't know her personally, my wife and I are friends of her parents.
In fact, my wife and her mother been friends for at least 60 years. Dr Trotti is a Professor of
Neurology at Emory University and is board certified in sleep issues. She is one of the
newer members of the Medical Advisory Board of the Restless Leg Foundation. I am a
Canadian and live a long way from Atlanta. If I lived closer to Atlanta I would go and
see her myself for my RLS

[Polar Bear]

Orrel - Thank you.

[ViewsAskew]

Lots of great advice given so far. It's really hard sometimes to have this dratted disease, isn't it? Unfortunately, many of us have been in similar situations - so at least know you are not alone.

By the way, casein and gluten are not necessarily issues for folks with RLS/WED. You said your dad had it - did I understand that correctly? If so, then most likely yours is primary-familial. It's possible, but not as likely, that foods are part of the cause. It's likely genetic. My family has it - 4 generations that I know of. Foods do not help or hurt me most of the time. I've had it since I was a child. I sort of feel like it just is and I can't change it, nor can I change my diet or do things other people do to resolve their symptoms. I'm going to have mine no matter what. That may not be true - they may learn that something will help this group, but so far, only medications seem to work.

Per addiction, it is a possibility, but it's a very small one. The research is clear - those of us with RLS/WED are much less likely to deal with addiction issues than other people. Diazepam certainly can be habit-forming, though - your body can become used to it or dependent on it. I had that happen with clonazepam (though it didn't help my symptoms) - it took me many months to stop it. But, I wasn't addicted in the sense that I craved it and would do anything to get it.

Hope you find a doctor soon that you can work with and trust.

[graham3196]

Dear View Askew
Because you have some family history of RLS doesn't mean you're necessarily stuck with it. My parents both have it and it effectively killed my father. Despite this I have been 99% cured of it by a diet. I had it really badly and getting worse - living on 2 hours sleep every second night and trying to hold down a job. I am now on no medication and I still don't have a good sleep pattern but I expect that to improve with practice. I slept for 9 hours last night. I have entered the details in a conversation on this forum called RLS and FODMAP. (Search for diet or fodmap) The moderator tells me there are other similar diets mentioned on this Forum but I haven't seen them yet. I heartily recommend that you try the FODMAP diet for 8 weeks and if it doesn't work try some other diets. The Wahls diet might be similar, I don't know. Perhaps if you tell your doctor that you want to try the FODMAP diet he will be able to help I hope there is a solution for you in there somewhere, It appears to me that our disease is related to irritable bowel syndrome so what helps them might help us. Aren't they lucky to have a disease that gets all the attention!!!

[ViewsAskew]

I don't want to derail this for the original poster so will quickly thank you for your concern and say that I have tried multiple diets already - they have not helped.

[sleepdancer2]

Somehow I missed this thread before tonight. I feel so bad for the misery you seem to be in and hope you are on your way to finding some relief. Are you taking anything to get your ferritin up higher? Might be a good idea. I think current thinking is closer to 100 is better. I have to say I'm impressed with anyone who goes off mutiple meds at once cold turkey. Not sure if maybe a slower path would have been easier on you, but you've done it now so I agree that having a clean slate can be advantageous. I went off my meds for my legs abruptly and it caused problems, so I went back on them, titrated the dose up again, then weaned off. Didn't fix the problems and should have just left it alone since I'd been off a while. I wouldn't have a clue how to help facial pain and some of what you're experiencing, but I am fortunate that using a TENS Unit has sufficiently treated my legs and allowed me to get decent sleep. May be worth a try. A few years ago I was in utter misery as you described. Wouldn't have bet a nickel on my chances of surviving much longer, much less on ever having any quality of life again. But here I am several years later. My health isn't perfect because there's other things going on, but getting my sleep straightened out has given me back so much of my life. Don't give up hope. It can happen.

[Icnflms]

Hi Tammy,

I hope you don't mind me contacting you, I have read call for help post and am very moved by your struggle. I am really sorry to read that you are suffering so badly with RLS and feel so desperate.

I am currently putting together a documentary about Restless Legs Syndrome for broadcast in the UK. We are looking for RLS sufferers to share their story and in doing so help lift the lid on the so-called 'invisible illness'. RLS is often ignored in the UK and we are hoping with this documentary we can raise awareness and understanding.

Here is a link to our company website and RLS documentary advert:

http://www.iconfilms.co.uk/whats-going-on.html

If you would like to be involved please do get in contact - I would really like to be able to set up a phone call between you and our Researcher, Laura, so you can talk about your experiences as an RLS sufferer, and coping mechanisms you have.

Thanks for your time.

Best wishes,

Ariane
Icon Films
rls@iconfilms.co.uk