Options? Feel I'm Out of Them

[badnights]

I also think putting you on Mirapex was odd - ineffective, and you suffered unnecessarily for 10 days because of that bizarre decision. I would have expected that from a doctor who knew very little about WED plus was afraid of opioids - but that can't be the case because your doc had you on methadone.

at any rate you're right, it sounds like you'll end up on a combo, and you will undoubtedly have to tweak and change that over the years (months) but it's so much better than not being treated at all. A few of us have noted that using two classes of drugs seems to address different aspects of the symptoms... particularly for me, when I used an anti-convulsant, it affected the sensations but not the urge to move, whereas the opioids have a greater effect on the urge to move than on the sensations; and when I take a DA, it's almost like a sleeping pill, I sleep so much better (but I can't take them often or I augment). Fraujulie (sp?) is a user here who also noticed that different classes of drugs impacted different symptoms... I forget the details.

I think you're likely to find an effective combo. It would be interesting to see if you notice the different effects on different symptoms too.

[Polar Bear]

Just to say that I use a combo of medications.... my cocktail, and it is the best symptom relief I've had, not perfect - there is occasional breakthrough, but nothing that can't be dealt with.

[rthom]

That is great to hear, and very important for others to hear that something is working, for folks. PB can I ask, is it working well enough for you to work a regular job? A lot of posts recently are about the worries associated with work.

[ViewsAskew]

I think the estimates are about as follows:

10-12 percent of US and Northern Europeans have some form of WED/RLS.

Of those, the vast majority have it very mild.

About 3 percent of those who have it, have it severely. Among those, Dr Buchfuhrer has said there is a high percentage of success in treatment.

I hate to say it, but the percentage of us who really can't be helped or are helped marginally is tiny, tiny, tiny. Doesn't make us feel better, but it does help when we give advice. Most people who come here WILL be able to do what they need/want in their lives.

[rthom]

I believe for myself anyway, it's imprtant to remember that--seems hard for us, but maybe others don't have to experience the rest of their lives that way---seems less dark--we'll be able to help someone, maybe. It's a possitive--we need to keep track of as many of them as we can.

[Polar Bear]

rthom - I have now been retired for 3 years.
Before this I worked in a lawyer's office normal hours Mon - Fri, 9 - 5.

For more years than I can remember I had gone to work having had only 2 or 3 or 4 hours' sleep. I worked under the pressure of no sleep and also having WED symptoms during the day and standing at my desk to work with my keyboard on a coffee table on top of my desk. More and more I began to feel overwhelmed, but I was doing work that I knew inside out and should not have felt overwhelmed. Took myself to my doc and returned from him to the office and immediately asked to reduce my working week to 4 days. Work agreed to this because the financial recession was hitting everywhere and to them it was a cost saver. I was beyond caring how I'd now do 5 days' work in 4 days.

Within 6 months redundancies were made. I had never before invisaged myself fully retiring. Hmmmm.... how my views had changed.... these redundancies happened one month before I qualified for the government state pension. I went through the tears and shock, and then got over it, and have never looked back. No pressure from the alarm clock. I am awake for 2 or 3 hours in the middle of the night, every night. I sleep for maybe 1 or 2 hours and then wake up, and get up. This is not WED symptoms, it is insomnia, from meds, from habit, who knows. Then it's back to sleep and I can sleep (or not) until I wake up.

I am fortunate that thanks to my hubby, my circumstances are adequate and allow me to be retired.
There is no way..... no way at all, that I am fit to work.
If I had to work to pay the bills then I dare say I would trail myself through it one way or another, but 3 years ago I was on the point of collapse.
The thought of having to work to a plan, a clock, a deadline... is very disturbing to me.

I feel very privileged to be able to be retired and feel so sorry for anyone who suffers from this horrid disease, lack of sleep, and a demanding work schedule.
Congratulations to those of you who are coping with demanding employment with no other alternative.

Like Ann says, of all the WED sufferers in the world we are among the minority (and indeed most of us get some sort of relief with treatment) we have sought out a Discussion Board to look for help and to try to help others.

Most of us could lecture to some extent on the subject, in an ideal world we could be an 'Advice Line' for the uninformed medics, we know so much more than them about WED,
And yet we are at the mercy of those medics who are uneducated in the disease and some of whom think it is 'just a bit of a nuisance'.

Well... sorry... I kind of went off on one there

The short answer is - No, I don't consider that I am fit for any sort of disciplined work pattern, or for any work that would demand a concentrated thought process.

[badnights]

Most of us could lecture to some extent on the subject, in an ideal world we could be an 'Advice Line' for the uninformed medics, we know so much more than them about WED,
And yet we are at the mercy of those medics who are uneducated in the disease and some of whom think it is 'just a bit of a nuisance'.

Those people who belittle it, when they're the medical professionals who are supposed to be helping people, are doing a great disservice to us and to their profession. They should crack the books and learn a bit. Lucky we have the ones who AREN'T like that too. I bleed a little inside every time I read of someone whose doctor belittles the disease.