RLS has a secondary Symptom

Since my early teens ive always had what i described has fidgety feet and have never been able to sleep with my feet under the duvet...This was never a real issue, just something I lived with.

In my late teens, early 20's this disease became a real nuisance and started to effect my hands. It was mentioned casually in conversation to my GP but nothing was really looked into.

in 2001, following a personal trauma in my life, I experienced a severe mental breakdown. This seemed to intensify the severity of my RLS, I found it impossible to either sleep or relax in any position. I was effected 24/7, but night time was a nightmare. It effected feet, legs, arms and hands with equal intensity.

I was finally diagnosed in 2010 with severe/acute RLS and was almost fobbed off by the Neurologist. However, in his defence, he decided to send me for Electromyography.

This procedure actually determined that I had Sensory Neurology, which was causing the RLS. Since 2010, the disease has rapidly worsened to the extent where (on a bad day) it is now affecting my ability to cope on a day to day basis.

It has also now caused a relapse of my depression, hence why as i write this ive just spent two of the last 3 days in A*E following overdoses.

Now im not mentioning the last bit to gain any sympathy, Ive learnt to accept my illness and am attempting to regain control of my illness...However, in case there are people who are not aware of this, RLS is caused by an interferrence in the brain of the chemical Dopamine, low levels of Dopamine can result in elevated levels of depression. This is a very shortened and simplified version of the scientific facts, but I just wanted to share with people this fact. Depression is a silent illness sometimes and people may not even know there suffering.

For the public record, im currently perscribed Pramipexole, Pregabalin, Tramadol, Paracetamol, Amlopidine, Bendrofluorodhiazide, simvastatin, colofac ad motillum for my problems. Does anyone else have any perspective on there experiences with RLS and how ineffective the medication seems to be.

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  • I am sorry you have been feeling so badly! I'm glad you have been trying lots of things and the only real advise is to keep trying to keep trying until you find what works for you. This is the right place to tell people how you feel getting sympathy is bedded when is needed. When I fell downstairs and had to use crouches, you you'll not believe how much sympathy I got. Mental health gets you no sympathy. So keep on trying.

  • I agree, I did not take any more pramexipole when I got morphine two years ago and I did felt a bit down after a while.

    We do need dopamine and it is a problem because of the side effects from the drugs.

  • Yes Brimsta, dopamine is a great brain chemical! Our brains are like a symphony with mother nature orchestrating it all. And it's so hard to recreate that perfect symphony when things get out of whack. I learned the hard way that anything that increases serotonin (another feel good chemical) aggravates the living heck out of RLS. So no antidepressants for me or melatonin or Benadryl for that matter. Hopefully you steer clear of these things too? You know the American Indians believed that anxiety, depression, breakdowns (called the "dark night of the soul") are a MUST. They believe that these things (depression, anxiety) are actually our "spirit guides" in disguise that will lead us to become Warriors. I am a Warrior. My son is a young Warrior. He had his first panic attack at cub scout overnight camp. He went back the following summer to once again greet his tormentor. The night before he left I told him about the dark night of the soul. Unfortunately there were no panic attacks that time at camp. When you accept that you must experience the dark night of the soul you let some of the light in and then it becomes increasingly difficult to be fooled. He will continue to be visited by these spirits through out the course of his life, as we ALL will. But these days I greet my spirit guide as I do an old friend. Be well Brimsta. Do not be afraid of the journey you are on, soon you too will be a Warrior.

  • statins raise the red flag as high as I can get it...

    So if i read between the lines in what you told me..I am hearing you say

    that the neuropathy is what is giving you balance problems? I have sensory

    neuropathy..that's better than the other nerves being affected..I was diagnosed

    just the same as you..unreal how painful that test is and they just keep shocking

    you...again and again..I bet you liked that test- (sarcastically)

    People are selective when they see people..I get around like I am wearing a blindfold..

    seriously...the sympathy...do you really need it? Part of the problem that goes on is

    that when people have so much sympathy they tend to be too helpful and they

    do too much for us..It truly can disable someone..it kills the self esteem of the stongest

    person..Having a "Can Do" attitude and finding another way to get around or doing

    things just like everyone else can be empowering...sympathy tends to keep people

    stuck in that thought..saying "oh you poor thing" can rub off on the person..if they

    hear it enough, they start to believe it..I think that the term 'disabled" cripples someone

    who is not crippled otherwise..My surgery leg is what I call my broken wheel...it's functional

    but I can feel the prosthetic a lot...I have the best knee that I could get..I took on debt to

    get a better one just so I could run, play with Elmer...but is it a disability? Nope..

    Not for me, I still get around as well as someone with their own knees..but do I have

    challenges? Yes..big ones ..if the leg dangles..it becomes a weight and hurts my

    femur bone bad..very...I have a plate, some screws where I broke my leg off..the

    surgeon said that unless the screws back out..I am keeping those screws...My body

    doesn't like the plate and screws but didn't start attacking..Amazing to me..but it

    might answer why my white blood count is so high...Hey ding, ding, ding..it's worth

    consideration anyway...

    Don't listen to the sympathy..it does psych you...especially if you mimic what you hear.

    I have a sister who was always told that she was a really good eater by everyone...she

    still is a really good eater as an adult..She became what people labeled her..Sad, I know..

    The 30 plus pounds is hurting her body a lot..She has BP problems, other nuisance

    Addressing the mental problems that are really just hurts and reflections of self that isn't three is part of the problems..If you looked in the mirror and all you see is a person that

    you don't even know..or doesn't fit the description...you can hate to look in the mirror..

    I was one of those people...until recently when I made peace with the gore and ugliness in

    myself..so I finally buried the crap for good, it's still there but not an annoyance to me anymore..You need to strip down such things, face them, tell someone and let it go...it's soul cleansing..start playing positive messages...start being with people that bring out the best in you...so your best friend will let you struggle with your day to day stuff a bit - that person should be cheering you on (best friend, partner) Once you get the ugliness out of you..

    the squirmy stuff especially, you will have more purposeful days..you can set some goals

    just small steps (laughs..what about Bob) baby steps...at least you will have your feet pointed in the right direction..

    I'm getting too deep and thinking too much..I'm out of here to go with Elmer..It's all fresh snow..I love it...it's Elmer's favorite pavement (snow) so see ya tomorrow or some other time. XX Karen

  • Wow...I'd like to thank everyone who posted here. Sometimes its nice to know there are people out there that care enough to take the time too reply to a stranger...Especially a stranger from the other side of the pond (UK btw).

    However, I would like to take this opportunity to reply directly to some of the comments.

    Mispiernas: I have a friend who for nearly 20 years ago nearly died in a head on crash in a car...It was his fault, however, his main injury was the loss of his left leg. For many years we discussed how perceptions make it much easier for people to acknowledge his illness/disability purely on the basis that they can physically see the problem. My illnesses are invisible...It can be so frustrating having to explain repeatedly to people what i have, in fact, i have been known to 'dodge' the question in preference to seeing the vacant, glaized look that occurs midway through a normal description of'whats wrong' with me. I have found people to be very shallow in there ability to deal with illness or disability.

    Swedish: I agree the side affects can be unpleasant...But for me, its a fine balancing act between which is worse, the side affects or the illness...My Doctor is very supportive and accepts that my knowledge of my day to day needs is greater than anything he may be able to read in a medical textbook. So i self medicate with his grudging, but understanding permission.

    Whitea: Im a great believer in that words can be more powerful than physical actions when used correctly. What you spoke of is something that meant alot to me, so thank you. Now, Im not from the US so my knowledge of American Indians, however, I have always found there culture intriguing, especially the spiritual aspect of it.

    One intriguing thing about the world we live in is that, regardless of geographical locations, regardless of what period in time, regardless of the ideology behind the belief, I have found that many beliefs share similar concepts and ideas, they just approach them from a perspective that is determined by the culture (hope that makes sense)

    Before 2001 and the onset of my illness, I was probably the most unpleasant person you would ever NOT want to meet. I wont go into details, butI acknowledge that the person I was then is someone I now would hate to know.

    When i had my breakdown, I had no family, no friends, no support network whatsoever. For a number of years i spiralled down as I battled with my own demons. Depression is a great tool for honestly analyzing your life. Oncce you get past the 'What If' stage and not long after the 'I Want To Die' stage you reach a point in your life where if you are honest to yourself, you can see the person you truly are. I rebelled at who I was and the person I am now is the complete opposite.

    I am (at least i think so) a kinder,generous, thoughtful and more compassionate person. I now put other people before myself. This may sound like a great change of events, but in my opinion, being nice to people has made me open to attack and more emotionall vulrunable.

    On monday, after a weeks of severe illness, I was talking on Facebook with my neighbours 13 year old lad. Now you need to understand that I consider my neighbours to be my best of friends, I treat the children as if I was there uncle, I felt happy as considered them to be almost a surrogate family. As i was talking to the lad, he started being a typical mouthy 13 year old and i snapped at him. I regretted it instantly, but what is said on fb stays on fb. Feeling ill is no excuse for snapping, but I am only human and was going to apologize later on in the day when i saw him.

    30 minutes after i snapped, I recieved several texts from his mother and the person who i considered one of my closest friends. This is the main person who had helped me stabilize my depression and her kindness and compassion was a great strength. She knew how i felt about her and the kids, and knew how badly i dealy with stress and abuse. The texts where a character assassination on a level beyond anything i knew possible.

    Every safety measure and precaution i used to control my depression was blasted away instantly. I struggled the best I could, but on Tuesday evening I took a massive overdose. I regretted it instantly, and a friend called in later to see me and noticed I was slightly unwell....15 tramadol effectively make you hallucinate like your on alot of LSD. Add the other tablets and i was not in a good place. I lied to my friend. I lied to the paramedics. And i lied to the doctor at A and E. I said it was an accidental overdose due to being a scatterbrain (which in itself wasnt a lie :P).

    I was released Wednesday morning. On wednesday evening i took a second massive overdose. The irony is that my body has a high tolerance to medication. I dread to think how many tablets i need to take to do anything, but Im thinking i might have to be a shareholder in a pharmaceutical Company :D.

    Bizarrely enough, they released me again even though i admitted to both overdoses. Dont ya just love the british medical system.

    Im now experiecing something i havent for a long time. I feel angry. Angry at what my friend has said to me. Angry that yet again I allowed a friend to hurt me. Angry that I was so weak i tried topping myself twice. Angry that being the nice guy just means people treat you like a doormat. The anger is actually helping keep my depression under control, but its getting worse. For the first time in over a decade the nasty me is back...And im not sure if that bothers me. If people wont respect me as a nice person then im starting to think i would be a (INSERT APPROPIATE SWEARWORD) and just look after my needs and screw everyone else.

    This is my mindset. Im agreat believer in karma. And i personally believe the last 12 years of hell is a fair piunishment for the person I was.But enough is enough. Sometimes you have to make your own karma and the consequences be damned.

    Sorry for the length of that reply but sometimes venting your soul take more than a simple paragraph :D But i hope you see why I respect your beliefs and in my own way, embrace the concept.

    Yikes: I have been diagnosed with Sensory Neurology...However, my Neurologist states it would be better to class it has "symmetrical polyneuropathy". The Neuropath affects ALL parts of my body, but is more intense on the left hand side. If you drew a line down the centre of my body, everything too the left is many times worse than the right.

    It is affecting my blanace, muscle weakness, my walking style (I look like a sailor after 6 months on rough seas :P), at its worse my ability to walk is so impaired i am unable to use the stairs in my house and have to urinate into a bottle and sleep on the couch (sorry if this sounds graphic, but im going through a 'couldnt care less phaze' atm), my ability to pick items up is affected as when closing my hand it triggers electrical shocks thoughout the limb im using, i suffer intense muscular pain in all limbs and it has now started to cause muscular chest pain similar to the onset of an heart attack (quite worrying at first tbh), my eyesight is affected (Imagine your vision as binocluars...You are looking at something and your left eye is constantly in and out of fucus like someone is adjusting the binocular lenses)...Recently ive started to get left sided facial tremors that affect my ability to talk and cause me to drool...The disease is affecting my blood pressure and heart rate. Medication for blood pressure is useless..Which is a problem has since the disease has took hold with a vengeance, my weight has gone up alarmingly...So now im consider High rish of an gheart attack. But due to the problems i mentioned before, I would know I was having an heart attack until i dropped down dead.

    Now dont get me wrong..99.9 percent of the time I am content with my life. My animals and I are happy. I dont life a life most people would understand, but tbh, screw them. Im learning the hard way that most people serve one purpose in life, and thats to cause misery and pain on other people. So, perhaps, instead of letting other people hurt me and inflict the prejudices on me, I need to learn to embrace isolationism completely. This isnt a negative lifestyle, it is simply a lifestyle i choose to help me survive.

    In regards to dealing with the depression. I have for many years become 'at one' with my illness. I never got rid of it, I learnt to live with it. Now i could quote medical facts stating why I probably wont ever be rid of the depression, but it is no longer 'normally' an enemy. I will hopefully soon be able to say that ive got the depression settled down again, but i just dont know who I will be this time.That makes me sound even crazier than I am, but I definately dont mean I have a multiple Personality Disorder, I just mean that in my life so far I have been two complete opposites as a person, so anything is possible.

    Anyway...Im done. And i apologize to all you lovely people for the amount of waffle and diatribe youve all just waded through. I look forward to reading your replies and thoughts on what ive said.

    Kindest Regards To All, Andy.

  • I am sure that I speak for everyone on here when I say that "We all love and support you" and that goes for anyone who needs help in their darkest times. We all need to vent and "get things off our chest" in order for us to heal and get better. This site has some extremely nice and helpful people on here, who are more than willing to help, even if it is just to listen to others and give sympathy. We all stand together and support one another. Take care Brimsta, we are all rooting for you and others. Suzy xx

  • Wow, this person has a way with words.. If only I could write like that..

    If only I had that thought process, your brain, your expressions..

    I want to know something..do you want to end your life?

    Are you a trier? I love wading through waffle and diatribe with you..=D.

    You did say that anything is possible, right?

    None of us signed up for anything like this...our bodies hate us it seems like.

    I cannot once remember saying as a senior in High School..that when I

    grow up, I want to quality for disability because of what I have to deal with..

    A body that starts breaking down and hurting didn't make that list either..

    The invasion of disease changes a lot of things- it's true that people

    always judge a book by it's cover..maybe I did that too but if disease

    taught me anything it is that the person inside of the body is the person

    that I always was...My spirit, my thoughts, new and different abilities

    are born not because I have a bum knee..I have lost the ability to kick

    a ball, soccer was the thing that I loved the most..I can't sit in a tall chair..

    I can't ski, skate, jump from planes, or jump rope..If i break it again,

    I won't be doing much at all anymore..so everyone goes on without me..

    I can read, study, get around..I even work from home now...I am not

    the same girl without the things that I used to do with my time..I have

    some sensory issues that cause me to be alone a lot too..so..I am

    getting it...I know why you are upset..I have neuropathy also..sensory.

    I am stuck in some of my personal life, I have excelled in others..

    I do not like the medical crap that I have...But it's here..Looks

    like it might be for the rest of my life...people discriminate for good

    things too..if you are good looking, people assume that you are taken

    or would never talk to them...so they walk on past..or if you are not

    very good looking to them, they will do the same...People are shallow

    You are not, I am not..disease has taught us that...my changes were

    more recent than yours..so I am still making my way..I don't know how

    bad it will get before it stops..there are so many ifs in my life...

    I understand what you are saying..but for every single physical problem that

    you have, you have developed brain and have insights like no one that

    I have ever known..You have a better attitude than a person with working

    everything..You try hard, You will not give up trying..ever...You can

    write beautifully, your words are like music they just flow, make sense..

    Obviously you are a sensitive, compassionate person..you have a lot

    to offer and you have a giant heart to think of another family like that..

    to be that is special, it's unique...You ate so far away from being

    useless, or being half a person...Your seniority and knowledge is

    impeccable..I just cannot even tell you what I can see from what

    you wrote here...even in venting, you are totally lovable and your

    pride, courage and willingness to admit to flaws inspires me...I hope

    that you stay here in all of our lives...your honestly works for you...

    XX Karen

  • Wao! It's so lovely all the compasion and kindness and honesty I read hear from a stranger to a stranger. brimsta I also in UK and you seem very young and with many years ahead but keep away from FB. Working full time for me and keeping my job is a priority no matter how bad I feel. I looked after my daughter for 22 years and could not work for many years. She was her last year in hospital and died in a horrific way paralysed in IUT as consequence of statins. I don't want to live without her, my life without he is meaningless she was my north my south my working week my Sunday rest and my best relationship Auden helps me as well as all the other works of poetry, literature. Lately I just listen to Radio 3 and like knitting like mad, gardening when possible, my job is very rewarding and they are trying to get rid of me but I don't let them. I dress very brightly and love to make jewellery, clothes, etc. I have found a cleaner and at the moment I am managing well. But I have changed from an outgoing ( at work I am) to someone who needs solitude and music, doing things on my own. I am not afraid to die but I do have another two children who need me. I need darkness in music and don't like this idea that I need to be cheerful all of the time. My husband took me to a concert by Pursell and Britten in Kings College Chappell. The best concert I have ever been to and this is the kind of music that helps. I have fallen sleep on the wheel a couple of times but luckily nothing happened and if one day it does I do hope it will be fatal. But I am getting used to the drugs I take and I am incredibly busy , having no time to breath until I get home and do what needs doing. I am trying to get rid of all my medication but only as far as it does help me to continue working. Hope something I say helps.

  • WOW, i am lost for words. i am also in the UK. You certainly dont always get to know someones background on a forum. I feel so fortunately to only suffer with RLS, when i read these stories from people on here, and what their lives have been and what they are now. Its an inner strength we seem to have and find from some where that keeps us going, survival can be a strong instinct. Thank you for allowing us to have a peep into your lives.

  • Brimsta..Your story hit home in some ways..the circumstances are very different

    but the outcome is familiar..the negative feelings and actions is a place that I am climbing

    out of right now...I think that we are in the same place..one thing that we both are is triers..

    We will succeed or we will die trying... I love your "cando" and "will hold onto" spirit.

    Some people with two good eyes see much less than you see with one good eye..

    Having a physical disputably or loving someone who was once whole and watching his/her body start breaking down or disappear changes how we look at other people..My dad was

    the hero in my life..I aspired to be like him..he lost his leg..everyone changed instantly to

    treat him as a disabled man..but he was so able..so willing to learn to get around his disablities..that man had the worst imaginable surgeries done to him...but the love of family

    never lost sight of the man inside of that body that was falling apart, failing him, disappointing him and embarrassing him..He hopped around..he lived more active than men with two legs..he was a trier..his body sat in a bucket and had a leg attached to it... the maker of this leg was a first timer..he never made a leg that would work for an amputee with that degree of loss..right to the hip...Like a barbie doll with no leg...My dad gifted his family for Christmas..he WALKED into the living room from his bedroom...it took them 3 yrs to

    work to make him a functioning leg...My dad was a walking miracle..but through the years,

    I saw him fall down on the ground, he forgot that he had no leg..got up to pee..BOOM..mess on the floor, everything just was falling apart on him...he made up his mind to walk..he cried, he hurt but he kept his eye on the goal and did that before he passed away...It was the best gift that my dad ever gave to the family...everyone was cheering, crying and stood in amazement that he accomplished the biggest goal ..it was like crawling up MT. Everest..for him, for those who loved him...He did for himself like he had two legs..he would hop..he would use a scooter and sometimes he cried about his loss but he was a problem solver..he figured out how to sit to go down and up steps..He monkeyed to do it..hop, hands and however else he could do it..he was an adapter..he won his battle..he found a way...he didn't do anything like I did but with my patience, he found a way to fit in..to get to the finish line with the rest of the family...He taught Monroe Prosthesis to make a perfect leg for others just like him..and others can now walk with high amputations.. He still taught me a lot of things..God he was insightful, a leader, he developed tolerance for those not like him...he worked with the newly amputees..everybody wanted what he had..he made the bad things

    a teaching tool, a learning tool..he taught the entire family to look at people from the inside out and not the other way around...he hated having accidents..we knew that so we helped him to keep his dignity by doing what his body could no longer do anymore..that was just something that we had to do so he would continue to be that man who shared himself with the world.. It didn't feel like a burden because he was teaching us that the body is just a

    shell..it will break down, malfunction..it will do what the body does..it decays over time...parts fall off, have to get replaced and it lasts on earth only...I can't explain it better..

    There are no words that are good enough to tell you that his medical problems made his mind better, it brought out the creativity..his life was purposeful..it had meaning..he lived until he died...the last 2 weeks were the hardest for all of us..but we know that his suffering in that body will never die and everyone of us share his spirit..we all changed for the better..

    XX Karen

  • Houses can be rearranged..it's your home..customize it...

    Who says that the bed has to be in the bedroom.? If you like

    sleeping in the living room...why not make it your bedroom...switch

    rooms..that house is set up for YOU to live in..if company comes to see

    your house and not you...well they can just bite me then...haha..

    The house is yours..so customize it to fit you...you should not have to bend

    to fit the home... How do I know that? I had that surgery that left me with NO

    knee at all for months..they kept taking it out and gave me a useless spacer..

    I made the dining room my bedroom..Too bad if it didn't look right to others...it

    worked for me..I couldn't do steps..or it was dangerous for me...so I played it safe

    and not one person said anything but OH WOW...this is ideal..smart of you...

    My house is set up to get a view of the Tele but I don't even like television that

    much..so I read a lot...or I am on the computer to work anyway...I love my dogs

    too..they keep me company..never repeat what I tell them..we have our own language.

    I am alone a lot by choice..I like to be alone in the quiet...I don't care if I see people

    or not for a few days...I always told you guys that I am a hermit..living under a rock..

    Elmer, my hound requires that I get outside and be active with him...so I do and then

    I see people...I mingle..I am fine with that...it's more than enough for me...=)))

    Also I work at home...best thing to happen to me ...I am bothered by others..I get

    distracted too easily..lights and tapping sounds bug me..I don't miss the gossip that

    I used to be exposed to and I sure don't miss the competition, the wanting to survive

    the corporate shakedowns..if it happens then it does..tough beans..I will find another

    job someplace else...everyone is disposable in the corporate world....greed and their

    attitude will bite them later in the butt...karma is true in my world..Tis true for me..

    I don't have to dress up or drive anywhere...I save money that way even though I accept

    half that I am worth money wise..I love my surroundings..it works with RLS...XX karen

  • keep trying, I am on ropinirole,(adartrel) tried so many medications over the years, it works for me. 2 at 4pm and three around 10 pm. good luck!!

  • Tell him you stop breathing and get a sleep study that is how they diagnosed mine

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