Greetings from a lifelong UK sufferer.

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Heyyy_REDDOG
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Joined: Wed Aug 03, 2016 8:45 am

Greetings from a lifelong UK sufferer.

Postby Heyyy_REDDOG » Sun Aug 07, 2016 12:54 pm

Hi everyone!

So I'm Simon. I am obviously new to this forum, but unfortunately far from new to WED/RLS.

I look forward to getting to know some of you, and more significantly to being part of a community which understands plight of a WED/RLS sufferer and what we go through.

Like many of you, my story is as long as it is challenging. I'm not usually one for sharing this sort of thing, but here and now seems as good a time as any. I hope you'll stick with me.

For as long as I can remember, I was a fidgeter. It was how my mother always described me, and quite accurately too. I never enjoyed long car journeys, or going to the cinema. It was always, uncomfortable. That’s the only way I could describe it. A painful, uncomfortable ordeal. Blinding what should otherwise be pleasant, enjoyable experiences. I suppose 10 year old me these days would be diagnosed with some form of “Won’t sit down, shut up, or listen to grown up’s” disease. But back then, in the humble 80’s, I was just a fidgeter. It wasn’t even really something I noticed, or was particularly aware of. It’s only now, looking back, that I recognise it for what it was.

But around 15 years or so ago, I became keenly aware of the fact that my fidgeting was encroaching on my sleep. An all encompassing urge, a need, to squirm, to kick, a perpetual need to keep my limbs moving. Legs, arms, my every extremity, screaming at me to move. If the blood pulsating through me could speak, it would surely be screaming. Ironically, that scream would most likely be blood curdling.

Not long after, I met Cassandra. The wonderful light that would one day be my wife. I won’t bore you with the sentiment, but needless to say I was happy. As we grew closer and spent more and more time together, I found that something as simple as cuddling up together to watch television in the evening, or lying closely in bed together at night, were ordeals. It seemed the greater the need to sit still, the greater my body’s desire to rebel.

It was my mother-in-law – although at the time merely that scary lady who knew my girlfriend longer than me – who first introduced me to the term “Restless Leg Syndrome”. Clearly this woman is mental, I thought. It sounds like one of those bogus, new age, la di da labels attributed to wingers and whiners. But sure enough, the next time we visited, I was presented with a page torn from a medical magazine of some sort documenting the very real… very… actually… bloody accurate symptoms I was experiencing. Maybe the crazy girlfriend knower lady has a point? Maybe I’m not just a fidgety fool? I made an appointment with my doctor, my borrowed magazine clipping in hand. I was pretty excited. Giddy even. I have a thing. A proper disorder. And the smart man in the room with the bed with paper blankets is going to fix it. I’m troubled, but heal-able. Oooooh. Get me. When my name was called by the ridiculous and handsome (but not ridiculously handsome) doctor man, I followed him in to his room.

“What seems to be the problem, Mr Red Dog”?

Of course, I have omitted my actual surname here, but needless to say he pronounced it incorrectly. But I didn’t care. Usually in times like this I would channel my father and proclaim the correct pronunciation, but not this time. On this occasion, I didn’t let it bother me. This was the man that was going to fix me. For him, I’d let it slide. This man would forever get a sh*tty pronunciation of my surname pass, for this was the man who would cure me.

Perhaps a little over zealously, I began reeling off my symptoms, only to be cut off before I barely began.

“Growing Pains.”

It was matter of fact. Just like that. His face was stone. It was sure of itself, and it was bored of me. I made a pretty feeble attempt at a protest, even producing the magazine clipping at one point, but it was no use. It was growing pains. The smartest man in the room had said so. I bowed my head, and I left his room. I think I even apologised.

As time went on, things got worse. My symptoms gaining momentum with every passing night, a perpetual nightmare, I was sleeping less and less. By around 2008, I was sleeping between 2 and 5 hours every couple of days. On average. Sometimes, I wouldn’t sleep for days. Until eventually, my body would give out and I’d collapse. I’d sleep in the backseat of my car on my lunch break at work, I’d ruin precious weekends with my wife and puppy catching up on a week’s worth of lost sleep. It was perhaps inevitable that my mind was soon to suffer. Concentration, short term memory, my ability to focus, all quickly rendered slaves to my convulsing extremities and their thievery of my sleep. Simple tasks, such as a trip to the shops, became a nightmarish experience. On one particular occasion I made my way from my house to the local shop, a literal 5 minute walk, armed with 3 every day items in my head. The moment a passed through those double doors my mind was erased. Not just in a typical ageing male “Why did I walk into this room, again” way. It was literally as though I had awoken inside my local convenience store. If I’d have been lucky enough to be dreaming I’d have surely found myself naked at this point. But I was awake. Awake and bloody confused. I did the first thing that came to mind and I called my girlfriend. My girlfriend, who I’d only said goodbye to moments ago. With horror tinged palpably in my vocal chords, I announced down the phone: “Babe, I’m in the shop”. Predictably, I was met with a knowing “Yeah?”. Of course I was, that was where I was supposed to be. But apparently, I didn’t know this. “I’m in the shop, and I don’t know why!?!”.

And so, this became my life. I was the absented minded guy. And to be honest, I didn’t mind. What I minded, was that I still couldn’t cuddle up to my own girlfriend at night. What I minded was that I was still only sleeping when my body could no longer go on. What I minded was trying to hold down a 9-5 job, getting up for work when I hadn’t actually been to sleep yet. And it was getting harder and harder to hide it. Managers started to notice. Honestly, why wouldn’t they? I was a zombie. I barely spoke to people, barely emoted. My primary purpose each day was getting through to the next one.

For a long time, a whole lot of nothing happened. I saw GPs, specialists, neurologists. On several separate occasions I was diagnosed with depression, an iron deficiency, sleep deprivation, a central nervous tick, sent for MRI’s, told I had an abnormal fundus… I still don’t know what that means… and then diagnosed with depression again. Amongst all of this, I should note that I was actually prescribed Amitriptyline by an admittedly very attentive and sympathetic neurologist. He was very smiley… and was kind enough to note with some alarm in his eyes that he had just come straight off of an over night trans-atlantic flight, but compared to him, I looked like sh*t.

We keep in touch.

But the Amitriptyline, it didn’t work. It helped me sleep, but the journey there was more painful than without it. My body wasn’t so much helped to sleep, as it was dragged kicking screaming. And then the following day I would be consumed by an overwhelming, unending fog. And it had to stop. The ends did not justify the means. The symptoms were not relieved, if anything they were exasperated by this macabre chemical concoction. And so I went back, to the life I led before. Of discomfort, of limited intimacy with the woman I loved, of lunch time nap times.

But then there came a straw that obliterated the camel and his back.

On one particular day, after three straight days of genuinely zero sleep hours in the bank, I hopped in my car and headed to work. Looking back, I know I should never have got in that car. I shouldn’t have even gotten out of bed. Call it adrenaline, call it bravado, call it stupidity, I know which one I’d vote for, I did it anyway. To cut a long story short, I blacked out at the wheel. Twice. The first time, I veered into the on coming traffic lane… luckily there was a distinct absence of actual oncoming traffic at that moment. The second time, I almost became one with a petrol station.

Let me be very clear, I don’t tell you these things out of some misplaced machismo. I was an idiot. An idiot who could have killed people. Nevermind myself, I could have hurt innocent people, going about their lives. I pulled over as soon as I could - shaking. At this point I was probably a third of the way to work. I made a decision. This had all gone too far. I made the decision to turn back and head home. The trip back was surprisingly less eventful, perhaps my adrenaline was spurred by the imminent prospect of my bed. At home, I did some quick research and called my nearest doctor.

When I awoke in my bed several hours later, I explained everything to my girlfriend. It wasn’t until the words actually left my lips and I saw her huge, terrified brown eyes that I realised what a terrible person I’d actually been. She stared protesting, quite rightly, that no job is ever worth risking my life for. I felt awful. She was right. I’d risked not only my own life, but the lives of anyone who may have been on the road with me that morning. I had worried that my sleep would have somehow dulled my resolve and determination when heading to the doctors, but my distinct dressing down had only served to prove that I needed to be firm.

I marched in with steely determination. With my best no nonsense face, I barked my name at the receptionist and was beckoned – with all the icy tone I deserved – toward the waiting area. Sure, I’d been less than pleasant towards the receptionist, but this was about a state of mind. I wasn’t going to take no for an answer this time. I wasn’t going to meekly accept Growing Pains or Depression for an answer. Those days were over. If it had to be, then this was war. I knew what I had. It was what my mother-in-law had told me I had the better part of a decade ago.

I walked in, and was greeted by the man who would soon endure my wrath. He asked me why I was there, and I politely, shakily, described my symptoms. I mentally gathered my arsenal, ready to strike. There were rude words – at least a 9 on the swear scale – sitting in the wings of my vocabulary, waiting to be called upon to spit like venom. But they weren’t needed. None of them.

“Seems to me like you have a severe case of Willis-Ekbom Disease, colloquially referred to as Restless Legs Syndrome.”

Love.

I was in love.

All the hate, the anger, the rude words, they fell away.

Armed with a prescription tailor made for people just like me, I sent a text to my wife giving her the news. She would later tell me that she called her mother to share this news, letting her know that the diagnosis she gave me the better part of a decade ago had finally been confirmed.

But those early days on Pramipexole weren't without their hiccups along the way. After my first week, I made the utterly ridiculous decision to not take them over an entire drunken weekend. Then, Sunday evening I resumed my heady dosage. Early Monday morning, my phone’s alarm erupted with synchronistic precision. Bolt upright, I reached for my phone at the end of the bed. But something was wrong. As I tried to find my footing on the bedroom floor, it was as if I was attempting to stand inside a black hole. Confused, half awake, I elected to ignore my legs and focus on using my arms to pull myself up, but that didn’t work either. My entire right hand side had simply gone on some sort of holiday. I collapsed on the bedroom floor, my phone’s intentionally atonal alarm still reverberating throughout the room.

Inevitably my wife soon awoke, demanding quite rightly to know why I hadn’t killed the alarm in it’s sleep like a real ninja. Like the terrbile ninja I was, I quivered back that I couldn’t stand. That my body… didn’t work. Half asleep, her recommendation was that I stay there, until I could. It was sound advice. No arguing here, really. So I did. And eventually, normal service resumed. All limbs restored.

When I started to write this post, I told myself to just write it all out. Every minute of every pertinent moment I considered important to this story. Then I would go back and I would rewrite, edit, peel back and sacrifice anything unnecessary. But on re-reading, I found that it is all necessary to tell my story. To explain why I needed to tell it. Every embarrassing moment, every time I wanted to punch myself out of existence. I kept it in.

So, listen, if you made it all the way to this point, please let me know. It would mean a lot to me to know that you at least got this far through something so selfish and self indulgent on my part.

In the meantime, be excellent to each other.

Rustsmith
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Re: Greetings from a lifelong UK sufferer.

Postby Rustsmith » Sun Aug 07, 2016 3:03 pm

Simon, I really wish that I could tell you that your story is unique. Unfortunately, most of us have similar stories. The details are different, but the long, frustrating years of consulting with ignorant doctors searching for an answer is something that most of us have endured. We also shared in the initial "miracle" of pramipexole or one of the other dopamine agonists until that miracle came back to bite us.

So now we all struggle to maintain a reasonable quality of life, waiting for the next issue that will require a change of medication. Almost all of us are highly dependent upon the support of family and a few of us have even required our families to pack up and move to a different location so that we can have access to better medications and doctors.

And all the while, the ignorance of most GPs, internists and neurologists continues to generate more and more stories like yours.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

stjohnh
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Location: Palo Alto, California

Re: Greetings from a lifelong UK sufferer.

Postby stjohnh » Sun Aug 07, 2016 5:32 pm

Welcome Simon. Like Steve said, you are among friends, most of whom who have direct experience with problems like yours. I'm sad and sorry that it took so long for you to get an accurate diagnosis. How is your current situation?
Blessings,
Holland

Polar Bear
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Re: Greetings from a lifelong UK sufferer.

Postby Polar Bear » Sun Aug 07, 2016 6:05 pm

How awful, and indeed disgraceful that it took you so long to get the diagnosis that will provide medication and some relief. Unfortunately many of us have been on the same journey.
I spent 20 years unmedicated and it was only when my husband saw Requip/Ropinerole advertised on tv in a USA hotel room and called me that we learned there could be help. My GP is as helpful as he can be with his limited knowledge and what I provide, gleaned from this site and the RLS Foundation site.
Yes, as stated by Rustsmith, we all continue to struggle to maintain a reasonable quality of life. No medication seems to work for ever and our sleep often ranges from disturbed to non existent.

It enrages me to hear of a doctor who will cut off a patient with a preconceived diagnosis and thus subject that patient to further years of misery.
Thank you for your story.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
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Re: Greetings from a lifelong UK sufferer.

Postby ViewsAskew » Sun Aug 07, 2016 8:15 pm

Thanks for sharing, Simon. It may seem selfish and self-indulgent, but it's really the opposite. It validates our collective experience. It helps newcomers realize they aren't alone. It normalizes some of the craziness in our lives that often feels unique or that we're all alone. It forges a bond between us in a way only a shared experience can.

here's to many changes in our systems so that none of us have to go through this kind of craziness an longer!
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.

jul2873
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Joined: Thu Nov 15, 2012 7:32 pm

Re: Greetings from a lifelong UK sufferer.

Postby jul2873 » Sun Aug 07, 2016 10:02 pm

Greetings, Simon. We are very glad to have you on this discussion board with us, but so sorry for your horrible experiences. Most of us have gone through similar troubles. Do take care and let us know how things are going for you.

Mary

Heyyy_REDDOG
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Joined: Wed Aug 03, 2016 8:45 am

Re: Greetings from a lifelong UK sufferer.

Postby Heyyy_REDDOG » Mon Aug 08, 2016 11:36 am

Thanks for the warm welcome everyone! It is equal parts comforting and horrifying to know that my experiences are far from unique.

In my 30+ year journey I have met and chatted with countless people who have suffered and continue to suffer as we all have. It’s the primary driving force in my attempt to locate fellow Brits who are comfortable sharing their stories on film, so I can try and raise awareness and maybe shine a light on all our plight. If I can get enough interest from fellow sufferers, I am also hoping to approach a few RLS specialists here in the UK for their insight.

I am planning to make an appointment with my GP this week – does anyone have any recommendations for how to handle his/her inevitable blank expression when I bring up augmentation?

I’m thinking of broaching the subject of another specialist referral and hopefully another sleep study. I had one about 2 years ago, but not only did they tell me to take my usual DA dosage (thus surely negating any WED/RLS investigations?), but they seemed more interested in trying to diagnose me with Sleep Apnea and fitting me with a CPAP than actually investigating my RLS.

(They also offered all of us a mug of coffee right before "bedtime"... Crazy!)

It’s truly shocking that I even need to ask, frankly, but any links/tips/advice for helping out my GP in this regard would be graciously received.

Thanks again for the warm welcome everyone!

Rustsmith
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Re: Greetings from a lifelong UK sufferer.

Postby Rustsmith » Mon Aug 08, 2016 12:05 pm

Simon, last year the Int'l RLS Study Group (IRLSSG) published a white paper on augmentation. The target audience for this paper was GPs, internal medicine specialists and general practice neurologists who are not familiar with the latest treatment protocols for RLS and augmentation. You can find the white paper to download and print at: http://irlssg.org/wp-content/uploads/2015/05/Summary-of-recommendations-RLS-Augmentation-13Aug2015.pdf

I should add that the RLS Foundation sent 50,000 copies of the white paper out to physicians in the US. But I expect that even though many of the members of the IRLSSG that participated in writing the paper are from the EU, the document has probably not seen widespread distribution in the UK.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

ViewsAskew
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Re: Greetings from a lifelong UK sufferer.

Postby ViewsAskew » Mon Aug 08, 2016 9:39 pm

Simon - what were you hoping for with the sleep study? This is how I understand it - they really don't care if you have movements. RLS is something the docs take your word for. And, even if you do have PLMS, they are usually not treated or treated as RLS. So, if your RLS is worse, it's worse and your doc will take your word. Or a good doc will, that is!

What they DO care about (and a lot) is another sleep disorder. Untreated, it could prevent the RLS meds from working.

But, I feel the same as you about the techs, lol, they really, really, really want to find apneas and hypopneas, lol.

Have you looked at the IRLSSG site? You might find a doc in the UK who works there are participates with them. It's a long shot and the person may not be close to you, but it's worth a look.

Taking the doc that Steve linked to would hopefully help. Most of us find that it's important not to overload a doc. It also often say something like, "I read this and wondered if you could read it and give me your opinion." It gives them their due and allows them to take the lead.

The other thing I would do? Become a bit of an expert yourself. Then you can tell if what they want to do makes sense or not. Many of us got into tricky situations because we believed the docs and thought they were experts...in this field, that often isn't true.
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.

Bob_the_Bear
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Joined: Mon Aug 22, 2016 8:19 pm

Re: Greetings from a lifelong UK sufferer.

Postby Bob_the_Bear » Tue Aug 23, 2016 2:54 am

Hi Simon,
I'm new here as well, but I wanted to welcome you. When I had my sleep study a couple of years ago, they too wanted to fit me with a CPAP. I generally turn over at least 20-30 times before falling asleep. So I asked the nurse how that would work? All she could say was that the CPAP would help me sleep better, and in turn, that would help my RLS.

They gave me an Ambien to knock me out, but I woke up in tremendous pain twice during the study, for 45 minutes or more each time, and finally gave up at 4:15 and got up. The nurse also told me that my meds seem to be working well, because I didn't kick my legs in my sleep.

I wanted to kick her, but I was too tired.

Bob
Bob

Jaywhoisit
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Re: Greetings from a lifelong UK sufferer.

Postby Jaywhoisit » Mon Sep 05, 2016 12:46 pm

Simon, you should quit your day job and become a novelist. You have a fantastic ability to eloquate your pain and your story.


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