Family & Friends Understanding Pain

Share how living with this disease can and does impact your relationships. How do you cope? What questions to you have?
James333
Posts: 12
Joined: Thu Dec 27, 2007 2:11 am
Location: California Fort Bragg Mendocino County

Family & Friends Understanding Pain

Post by James333 »

Dear RLS Forum members,


I have had RLS since the age of Nine. During my teens it was not that bad it effected me only a few times a month the pain was OK sometimes. I used Ben Gay and mild pain killers to deal with it. As I aged and came into my twenties it became much worse the pain was bad I started taking sleeping pills and many different medications to kill the pain some worked and some did not.


I am now thirty three years old and over the last 2 to 3 years my RLS has become terrible. It can be extremely painful and has effected my life and made me miserable. I have spent thousands of dollars trying to find a way out. I have tried many many many different techniques, medications, and Exercises and found them to unfortunately have little effect on my RLS.


It has become very painful and has moved into my thighs and now effects me in the morning on some days. I am very scarred that it will get much worse in time. I see no way out and no light at the end of my tunnel and I am ready to check out and commit suicide over it because I am suffering so much.. I have other health problems but this health problem is a big monster in my closet which will not go away. It does not even compare at all to any other health issues that I have. From a one to a ten it’s a nine. Five being a problem that effects your life during normal daytime activities.

I have become socially withdrawn and isolated from my family and friends as a result of my RLS. I am ashamed of who I am and what I have become. My family and friends do not understand RLS and how bad it can be. Most of them have never even heard of it or they think it’s a joke, excuse, phase and just BS which I wish and pray to god was. People do not understand what’s wrong with me. I am very fatigued and tired during the day time sometimes because of my RLS. I can act like a zombie during the day because of the lack of sleep And during the night experience chronic pain. I have become very depressed and sad because of it and I now take anti depressants. RLS has turned my life entirely upsidown over the last two years and I have found myself acting out and having crazy abnormal behavior.

Recently I have had PLMD in a minor way which scares me and I hope it does not get worse.

Requip, vicodin, ambien and Medical Marijuana which I am against and do not like have all been useless for my RLS, as well as many other meds. I have given up on seeing doctors about it and feel hopeless. Sometimes the only thing that works for my pain is to take massive amounts of medications to nock me out which is a very bad and dangerous thing. Alcohol seems to work well for my pain as well as Temazaphan. Years ago I had a gastric bleeding ulcer and was in the hospital for three days so I do not and should not drink anymore. I know My attitude is negative but I can not continue to live in this much pain. What do I do?

I am now considering temporary going on disability till I can beat my RLS or find a program and way to live my life again. I am a very strong person and was born a fighter.

Blaming my parents for my health is insanity and I do not even know if I can really blame myself ?

Anyways the point of my posting is three questions! How do I get people to understand my RLS and how bad this neurological disorder can be to ones life? Can someone in my condition get disability for RLS if so How? What do people do when there RLS becomes this bad how does one live there life? I had a life before and want it back!! I want to be able to take care of myself again!

I am ready to check out and do not want to live life anymore. I would trade my RLS for diabetes, Cancer, MS, or any other kind of disease or bad health condition. I need to beat RLS or I will eventually be in so much pain I will kill myself. I do not want RLS to take my life.

Hopeless and depressed in need of less drama and more laundry. (Metaphor)

I am not trying to be funny, sarcastic, or cynical in any way and sorry if I appear to be in this posting I am in dead serious need of help.



James333






:cry:
Everyone needs to know Willis Ekboms disease

SquirmingSusan
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Location: Minnesota
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Post by SquirmingSusan »

Hello Jame, and welcome to the forum. Many of us here have been where you are and can totally relate to what you're going through. The name "RLS" really sounds like a bad joke, but those of us here know that it can be a life-wrecking, disabling condition that requires serious medical care.

Please try to hang in there! (And before I write more, if you are seriously suicidal, please call your local suicide prevention line or go to an ER.) Most of us have been able to find effective treatment after much trial and error.

First, you need to get educated about this disorder. In the "New to RLS" section of the message board there is a link to the Mayo Clinic Algorithm for the treatment of RLS. Read that and learn about all the various treatment options. Many of us take medications from more than one category - personally I take an opioid, an anticonvulsant, a dopamine agonist, and a sleeping pill. My days and nights are still mixed up, and I get fatigued a lot, but I do enjoy my life again, even if I've become much more of a hermit than I ever was before.

Then you need to find a doctor who will work with you, and will do what it takes to get this under control. That's usually the hardest part of the equation for most of us. If you can make the trip to LA, there is a really great RLS doctor there, Dr. Buchfuhrer (we call him Dr. B). He runs his own website at http://www.rlshelp.org. I'm saving my pennies so that I can fly out and see him, although the only missing piece for me is being able to stay awake during the day.

As for the three questions - I really don't know how to get people to understand how bad it can be. But we all do, here in the forum. And yes, there are people who have gotten disability for RLS - do a search of the forum, there was a gal about a year ago who went through the process and got approved.

As for the third question, I think if you read the stories of some of the other people who hang around here, you'll realize that many of us are working that one out on an ongoing basis.

Just know that you're not alone in this and the RLS monster can be effectively treated, and often tamed. It just takes time sometimes and really feels like being sucked down into a black hole when you're going through it.

Hang in there!
Susan

ctravel12
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Post by ctravel12 »

Hi James and welcome to this group. Susan gave some good advise. The forum she was talking about is called New to RLS and there is a sticky post called "Managing RLS" which you will find alot of good information there including the Mayo Clinig Algorithm and if you are able to print it out and bring it to your dr.

Also in this same forum the second sticky post called "Useful Website" scroll down more than halfway and there is a post from Jumpy Owl and he gives a good layman's terminology on Algorithm. Please read it.

Believe me I know you are in need of help and we are here for you. James is there is rls support where you live? If you can please tell me the city of Calif that you live in so I can look up to see if there is a support group near you. I can give you the contact name, telephone number and e-mail address. I know this will be a step in the right direction for you. Until someone walks in your shoes they have no idea what you are going through.

Please keep us posted on how you are doing and if you want let me know the city so I can hopefully give you some info that will be of help to you.

We are here for you, so please do not hesitate to vent, talk, scream or whatever, we will be here for you whenever you need us.

We also have a chat line that we will be doing this coming Wednesday. I get on at 7 pm my time (arizona) so it would be 6 pm your time. We normally chat on Mondays and will resume that on the 7th of Jan. I hope to hear from you.
Charlene
Taking one day at a time

becat
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Joined: Thu Apr 29, 2004 11:41 pm

Post by becat »

Hi James,

I'm Lynne, or Becat. :D Glad we talked today, yes I'd talk to you anytime, I meant that. I was also serious about hanging in there, this is a place that saved me many times and will again I am sure.

I do mean hang in there and let us row for a bit for you. Your not alone in this fight anymore, you've got all of us.

Talking to others:

We all had to learn how to talk about it, we practiced and still are, right here on this board. So, trust that you will learn as well. You will also learn that some people in your life just will never understand, so agree to disagree and you'll be better off.
This Christmas I watched all of my family memebrs and out of the 4 children my mother had 3 of us have noticeable symptoms, 2 of the 3 have it painfully. And yet, there are those few that think it's all hogwash.
Or that some miracle supplement will work for me. I take supplements for my health, but it does little over all for my RLS.

James I think I had to grieve at some point that my life had changed. I was not going to be who I thought I was, I had this thing called RLS that controlled my life. I, too, departed from the social scene, and many other things I enjoyed along the way.
EX: This is the first yr. in the past 11, I have not been on a bowling team with my local bet friends. It got too embarrassing not to be able to wake up for the early morning time. And no they empathize with me that I feel badly, but they do not understand.
I have to make choices about what I do now. Your not at my level yet and may never get there, but I understand the loss of what feels like a normal life.
You just have to create a new normal, and that takes good treatment, support (you have us now), and a bit of time.
It's ok that your not feeling at your best, your not going to right now. BUT I HAVE GREAT HOPE FOR YOU.

Thank you Susan for your ER message and James I'm glad we talked today, I dont' think your there yet, and I'm glad I spoke to you, so that I know and can ease others here. But Susan was right, if you feel that way again, you go to the ER or call the suicide line, or me.

I will do as I promised and you'll get an email tomorrow.
And again Susan was right about DR. B. if you email him, he might know someone in your area that treat RLS seriously enough that you could start on the path to a good Quality of Life.

James, I do believe that yours is genetic, so it might change over time, but you'll not be without us here to help, talk to, lift you up, or row when you cannot. So smile and take a hot bath tonight before bed and smile, cause you just got a huge family that already understands and cares.

Hugs to ya,
Lynne

jan3213
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Location: Illinois

Post by jan3213 »

Hi James

I'm so glad you posted here this evening. And, I am so sorry you are suffering so badly with RLS. I reiterate what everyone else has said. James, please, please go to an ER if you are suicidal. Please!

RLS is bad--it can be horrible. I've had it all my life and mine started out the same way yours did. I used to use Ben Gay on my thighs every night until I practically burned them with Ben Gay and a heating pad. I understand how hard it is to get people to understand how much you are suffering when they can't see anything wrong with you. I know how it is to not sleep for years---yes, years! I am the same as you, James. But, I have survived. I am now 60 years old. I still have RLS, am on medication, but it is under control--for the most part.

RLS is bad, James. But, it is not worth losing your precious life over. It may seem like that is the answer right now. But, it isn't. You have so much to live for. You have your whole life in front of you.

James, as you can see from Susan, Charlene and Lynne--you have found very caring people here. People who understand what you are going through and will help you along your way to--while not recovery, to learning to live with RLS and to finding a way to live more comfortably and gaining control over your RLS. You have found a family, James.

I hope you don't mind, but I'm going to pray for you tonight, James. My son is 33--your age. I want him to live a long life and I want you to, as well. Please let us hear from you.

Warmly
Jan
No one is alone who had friends.

mackjergens
Posts: 406
Joined: Sat Jul 21, 2007 5:10 am

Post by mackjergens »

James,
I do not have pain, I only have the creepy crawlies that makes me walk all night. I am 61 yrs old and have Primary RLS, (inherited) so like you I have suffered all my life. RLS kicked in big time at the age of 27 and I walked the floor every night for the next 25 yrs, living on 2-4 hrs of sleep, and managed to raise a family and work during those yrs, not easy but I did it. At that time it seemed No Dr knew what RLS was and so I always got the strange looks from Drs, and of course NO help at all.

Finally after all those years I myself discovered what would stop my RLS thru having dental work done and the dentist giving my hydrocodone(pain pills) After several more years I finally found a Dr willing to listen and to help me, I now and have for over 8 yrs take pain meds, I rotate between hydrocodone and Ultram(Tramadol) and they both will control my creepy crawlies, allowing me to sleep around 5-6 hrs of sleep each night.

The best information I can give you is to READ every thing you can possibly find about RLS. Print off any info you feel will help explain things to your DR, but do not be surprised if he/she does not wish to read them, if that happens, I suggest you continue your search for a Dr that will listen to you.

I did notice in your post that you stated you are taking an antidepressant, you need to know that most all antidepressant will make RLS worse, so please read about and print off info. Most of us find that after we find something to control our rls, we are not really depressed, we were just so sleep deprived that we assumed we were depressed.
There is alot of wonderful info on this site about RLS and there are several great web sites full of great info that is very helpful in managing your rls. Please find the lists of foods known to increase rls and also the OTC meds and prescription meds that are also known to increase rls, such as any OtC cold meds, Tylenol PM anything with antihistimines in it, will usually always make your rls more intense.

Since yours seem to be more pain than creepy crawlies, maybe a pain specialist would be more helpful to your situation?
Just know that the more educated you are about rls/pain the better treatment you will be able to find for yourself.
Hope some of this info I have posted will be of help to you.
Keep us posted as to how you are doing, always know that you are not alone in this, according to RLS info, 5-10% of the population has RLS.

Sojourner
Posts: 1657
Joined: Tue Dec 05, 2006 5:56 am
Location: USA

Post by Sojourner »

J3, Hi. I think that you have received lots of good information and probably enough to digest for the moment. I have suffered rls/plm for about 40 years and possibly more. I am sorry that the present state of you rls is so dire.

Don't give up. Don't be ashamed. This disease was not of your making or choice. Though I, and many others here, may not be experiencing the severity of symptoms you currently manifest we are in point of fact just lucky. Lucky to have found this forum, lucky to have found the right cocktail of meds, lucky to have found a good provider, or lucky to have found or have a spouse or friend who understands. Right now I think you are just very "unlucky" but, I know your luck will change because I believe you are a strong person and a fighter.

Sounds like you have a plan and I hope you will consider the information and advice in the previous posts. More important than that, consider the "invitation" extended to you by Lynne and others. In the interim of things becoming better for you, let us be the part of your family that does want to understand and help. If it helps, lean on us often and lots. And above all, be gentle with yourself.

While we do chat regularly on Monday, one or another of us is often up in the wee hours and can chat. So, if you want, go into one of the forums...perhaps "General Topic-RLS" and ask if anyone is around. Do you know how to get to the chat room...go to rls.org and follow the left menu prompt that says "chat." For most, it's a simple process but others have had some difficulty getting in. Give it a test drive.

Sincerest best wishes, my friend.

M.
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.

Sojourner
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Location: USA

Post by Sojourner »

J3, There is a book titled Restless Legs Syndrome by Mark J. Buckfuhrer, MD, et al. Dr. B. writes the Q&A column on the www.rlshelp.org site. His book is frequently referenced on this site. Anyway, it is a good to have and reference. It has a very small chapter on Social Security Disability. Your library may have a copy or you can find it at Amazon and places like that. Also, if you have not already done so, reading his "column" at the rlshelp site can also be quite helpful and perhaps give you some additional ideas.

M.
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.

Rubyslipper
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Location: Missouri

Post by Rubyslipper »

James, you are getting advice from some of the best people in the world and I can't really add to what they have already said. We fight a battle with people who think RLS is a minor inconvenience--after all it isn't fatal is it? But suicide is fatal. Others have been where you are now. It takes a tremendous amount of courage to stop those thoughts of suicide and get help. I takes more courage to decide that you will not let this monster beat you, that you will arm yourself with knowledge and determination. Fight back! We are all here to help you in that battle. It's a tough road but you have friends here who will do all they can to help. I'm willing to talk to you anytime or just listen, what ever you need.
Read all these posts and take us seriously. There is good information here and I truly believe there is help for you out there. Please keep us posted.
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)

James333
Posts: 12
Joined: Thu Dec 27, 2007 2:11 am
Location: California Fort Bragg Mendocino County

More ?'s

Post by James333 »

I thank everyone for there support and suggestions on how to deal with RLS. I hope to see a specialist soon and get some help coping with it since it has been terrible the last 18 months. It is amazing the amount of support I have received so far by becoming a member of this discussion group people do understand the pain I am in. I have been to support group meetings in California but have not found a real connection.

Something I did not mention and should have mentioned in my posting earlier is that I am 6’1” and 210 LBS so many medications have little effect on me in some ways. I self medicate and double The dose of many prescriptions I try. I know everyone reacts differently to meds in there own way and self medicating is bad.

Over the last year I have found one thing that works for my RLS on bad nights is 4 or 5 diazepam generic valium and 4 or 5 temazaphan 15mg with a pain killer like Advil and other sleeping pills. This works and nocks me out but I know its not a safe way to deal with my RLS agony, torture, pain, and misery. Plus when I have done this in the past I have to drink an energy drink and take a caffeine pill just to Get up in the morning. Insomnia and pain are two serious problems.

Another thing I wanted to express which may not be related to my RLS is for the last ten years my back does this involuntary muscle spasm thing where it dances it is very very rare and only lasts about 2 to 3 seconds. The last two years I have been doing it more and more. Maybe only 3 to 4 times a months. I have always ignored it and believe its because my body is to cold. Also I have been doing this head and neck shaking thing the last three years on and of in a very minor way as well. This happens when I have not slept and usually have caffeine in my system. Sometimes it happens when I have to look some one in the eye and talk to them for a long period of time. I believe and hope it is a result of having to much caffeine in my body and no sleep.

I will have to make up my mind over the next month whether I will attempt to go on disability or not because of it. I do not want to go on disability at all but I guess nobody wants to go out on disability. I have had a very hard time excepting my RLS and how painful it can be. Over the last 15 years it was bad and painful but I could live with it and function as a normal person. I wish I did not have it at all. Again its only the last 18 months where its been hell.

Just a few more questions and subjects I wanted to bring up?

Is RLS a disease or disorder? Medically I should know the answer to this question even though I am Not a doctor. I still have a lot more to learn about it

What experience do people have with restraints in the bed and how do they react to it? Heavy blankets, socks, clothing, tie ties, etc…. Can this be a good or bad thing?

( My family had a large German Sheppard wolf Husky mix that used to jump in bed with me in the evening. She would usually stay with me till one or two am in the morning on my water bed and then cry to be let out of the room because I was to jumpy. One night I was in pain moving around in bed and Timber our dog showed extra love for me by Putting her two front legs and entire front body weight on my legs. It was amazing she was able to hold me still and provide warmth for me
helping my rls. After that night I tried to train her to do that again but did not have much success. )


Hugs to you

Restless James
Everyone needs to know Willis Ekboms disease

ctravel12
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Location: Lake Havasu City, Arizona
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Post by ctravel12 »

Hi James I am so glad that we offered the support that you needed. We are here for you so do not hesitate to call on any one of us. We will be happy to talk to you at anytime. I do host a chat room on Monday nights at 7 pm arizona time which would be 6 pm your time. This week because of New Years Eve we will be chatting on Wed. at the same time. We would love to have you join us. We will be going back to Mondays on Jan. 7th.

I am so sorry that you have not found a support group in California that has helped you. I am a support group leader in Arizona, however if I lived in your area would make sure that you would get the support that you need.

You asked if rls is disease or disorder. Myself, I would say it is a disease. I have heard about the weight on your legs (like what your dog did) does help.

Please keep us posted and let us know how you are doing. We do care and hope that you find the releif that you so much deserve.
Charlene
Taking one day at a time

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

Post by becat »

James what a great thing to have your recent post here.

You know your with family here, from all over the world. And this family comes from a community that will lift you, hold you, hang on to you forever, really.

I love that Timber showed you the power of love, our furry family members often give us what we do not know we need or that will help. I have many wonderful stories in my head of just that, those babies knowing our body far better than we do.
One man trained his very large dog to lay down near his legs just for the same reason. Maybe warmth and pressure at the same time. Another woman found it hard to have her cat in her lap for long because it worked the opposite for her. Your right many things are different for us all.
I like the heavy blankets, pressure socks, or my dog (huge 90lb lap puppy) laying on my legs.

This is a genetic disorder for many of us, and others it can be a side effect of medications or other illnesses. Dr. Rye of Emory Unv., along with another study this year (this being a study that found 3-4 genes) found a common gene that is in many of the genetic RLSers. If he could only test us all.

So I beleive this is considered a disorder. Never the less, it's doable for so many. Yes, even for myself when the doc and I work together on what it takes to settle me.

Your size is no problem, about the medications, it's the mix or the type. You have paid attention and will be able to help your doc understand that this or that is helpful or not.

I have so much more to tell you, but have to run for a bit. I will edit this post later.

Hugs our brother, cyber space is not that big around here.

Lynne

SquirmingSusan
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Post by SquirmingSusan »

Hi James, good to hear from you again. I hope you can get in soon to a specialist who will do what it takes to ease the suffering.

You asked about weighting down the legs - For a while I was jerking so badly that I got some ankle weights to try to see if they would help tame the kicking a bit. I found medication that helped before I actually tried that, but I imagine that for people who actually kick themselves out of bed that it could help.

Sadly for my dh, I sleep alone - too many sleep problems to share a bid. But my dog usually joins me. She kicks worse than I do, though. She actually runs in her sleep. She's about 100 pounds so once in a while I have to kick her out of bed. Dogs are such good company. That's just so sweet about you family dog.

As for the disability thing - I don't think anyone would rather be on disability than be working. But if you can't work then you need the help. I'm a member of another forum called http://www.butyoudontlooksick.com. There is a section of the message board having to do with getting approved for disability. There is a gal named Carolyn Magura who helps people with the process, and just about everyone gets approved. She really knows her stuff. You might want to look her up in that forum, and send her an email.

I hope things improve for you in the new year!
Susan

mackjergens
Posts: 406
Joined: Sat Jul 21, 2007 5:10 am

Post by mackjergens »

James,
Here is a link that you will find alot of different links to studies & findings about RLS. Lots of great info.

http://www.rls.org/NETCOMMUNITY/Page.as ... &srcid=486

ViewsAskew
Moderator
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Post by ViewsAskew »

James, in addition to the link that Mack gave, we try to post links to current research in a couple of different threads on the message board. These include research studies about RLS, sleep in general, medications, etc. These posts within the threads can provide a great deal of info to you and your doctor. I've printed them off on occasion and taken them with me..even if the doc doesn't read it, it shows him that I am doing my homework and what I say has credibility.

Awhile back I asked Dr Buchfurer as to whether RLS was still considered a syndrome (a group of unrelated symptoms, with no known cause). He told me that he felt it was not a syndrome any longer since we can point to genes that are involved and now know about iron and dopamine involvement. I think he uses both disease and disorder in his book, but didn't go get it to be sure (and hence could easily be wrong).

As to whether a disease or a disorder, I have no clue. I was curious about your question, though, so I did a bit of research regarding what the two terms mean. I couldn't find much on two or three searches. Then, on Wikipedia, I found this, "The terms disease, disorder, medical condition are often used interchangeably. There is no agreed-upon universal distinction between these terms, though some people do make distinctions in particular contexts." Of course, this was Wikipedia and doesn't look like this thread has a lot of people validating the content.
http://en.wikipedia.org/wiki/Disease

Given that I found little else about it, though, my guess is that it doesn't matter - it's probably more important that it's not considered a syndrome in doctor's minds, I would think. While still the same to us, at least they now have some empirical evidence that we aren't just making it all up.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

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