Newbie here... but not new to RLS

[ladybrat]

It is comforting to read stories and experiences that I can relate to. This disease can only be understood by those who have dealt with it. It is difficult to convey the discomfort that I suffer to my family and friends. The 'urge to move my legs' does not seem like a very disabling, painful, or agonizing symptom. Little do they know the negative impact that it has had and continues to have on my life…
I first developed RLS during pregnancy in 2004. It came on strong and in full force. My doctor didn’t know what to do for me. I tried everything that I could to ease the symptoms. Warm baths, cold baths, massages, creams; nothing worked. After weeks of little or no sleep, my doctor reluctantly prescribed codeine to ease my symptoms. I was worried about the effect that it would have on my unborn child, but lack of sleep and insurmountable stress prevailed. Fortunately my baby was born healthy and is now a very bright 8 year old boy. After my pregnancy I was one of the unfortunate candidates that didn’t purge the disease. I was then referred to a Neurologist who prescribed Ropinerole. Finally I was able to ‘shake’ the affects and have somewhat of a restful night. My sleeping pattern never did return to what it was prior to my pregnancy. Even though my legs were not controlling my nights, I was not able to fall asleep in a reasonable amount of time or stay asleep for the entire night.
In 2007 I became pregnant again. I had to stop my Ropinerole due to limited testing of the medication on an unborn fetus. Once again I tried everything that was suggested to ease the symptoms. Of course nothing worked and I was back on prescribed codeine for the duration of that pregnancy. I was blessed with another healthy baby boy. After his birth I returned to my regular prescription of Ropinerole that I am still currently on.
Over the past couple of years I have noticed that my symptoms have gotten worse. My condition is no longer limited to the night time. I now experience it during a flight, a movie and forget trying to take an afternoon nap! Even though my symptoms are controlled with medication, my nights are still restless. I see every hour on the clock and sometimes every half an hour.
I have experienced the symptoms in my legs, feet, arms, hands, and neck. If I get close to the end of a prescription I panic. I keep a backup supply of my prescription in my purse, briefcase, and medicine cabinet. I once got delayed on a business trip and had to stay for an additional three days. I was at the airport when my flight cancelled at 30 past midnight. I didn’t have any Ropinerole left so I knew it would be a long night. After pacing in the hotel room until 4 in the morning and crying with frustration, I paid $70.00 for a taxi to take me to a 24 hour pharmacy. I asked the pharmacist what was the strongest dose of codeine that I could buy without a prescription; 8mg. I took 4 and finally fell asleep at around 530.
I have finally had enough of battling this mysterious disease all alone. I am tired in more ways than one. No, RLS is not a life threatening disease. It isn’t excruciatingly painful, nor does it cause deformation. RLS sufferers are not dependent on others, or are not confined to a wheelchair. Yes, I give thanks for many blessings but it is nice to be understood. I am finally reaching out to others that understand.

Thanks for listening.

[ViewsAskew]

I am checking in on my last check before bed - the meds are working and I won't be coherent enough to cover everything.

Just wanted to write a quite note saying hello, I know what it's like, and to please search for the term augmentation. The search function is at the top right of the page. It sounds like that is what you are experiencing. Also, please have your doctor immediately check your serum ferritin level.

OK, fingers not working well, must go to sleep. More from others soon, I'm sure. And me too, after I get up later.

[Polar Bear]

ladybrat: You are definitely not alone. Please use the link in my signature to go to The Restless Legs Medical Bulletin which is a good document to use to discuss with your doctor. As Views says, please have a ferritin serum level check, it should up around 100 especially if taking a DA such as ropinerole. In the meantime until you see your doctor what about trying some codeine to deal with breakthrough symptoms. I do understand that OTC you can only get 8mg codeine but a couple may be just enough to help calm symptoms a little.

As a 24/7 sufferer I can agree with you how difficult it is to cope with air flights, long car journeys, movies. And I would never ever be without a back up of meds. Even a back up for my back up. As it happens I also have fibromyalgia and osteoarthritis and therefore have access to tramadol and 30/500 codeine which really helps control my rls/wed symptoms when supplementing my ropinerole.

This disease is incomprehensible to those who do not suffer, we can barely adequately describe it ourselves. though you did very well in your post.

Congratulations on the successful birth of your two children, it can't have been easy making it through.

It is very common that even though our symptoms may be under control/medicated, that sleep is still evasive. It can be a side affect of the medications, or it could be a poor sleeping pattern that is now ingrained. I succumbed to the use of a sleeping pill which helps somewhat, still not a full night's sleep. Then my doc prescribed amitriptyline to help deal with my fibromyalgia and for a couple of years I refused to take it as it can be very likely to worsen wed. Finally I gave in and took it and it definitely has also helped my sleep without any big noticible worsening of my wed. I do have breakthrough, but there has always been breakthrough, and the codeine helps this.

Is your doctor willing and helpful. Will he read good research material and use it as guidance for your treatment.

[ladybrat]

Thanks for the suggestions. I am going to see my doctor next week and will request the iron testing. I was tested before however, and was told that my levels were normal. I will keep you posted. Cheers!

[ViewsAskew]

Ask for the actual readings. People who have WED/RLS need to have higher ferritin levels than people who do not have it. many doctors do not know this.

[ladybrat]

ok will do. I am also bringing in the literature that Polar Bear suggested. My doctor was/is unfamiliar with the disease and has become educated through me. I also wish there was some way i could request a sleep test of some sort.

[ViewsAskew]

Unless you have apnea, a sleep test won't really help. It might find periodic limb movements, but they are treated the same as WED, so it really doesn't matter. It can, I suppose, show doctors how little you actually do sleep, which may make them a bit more concerned! That could be worth it for some of us.

Good luck at the visit. I've been there being the one to educate the doc. If he or she is receptive, it's not too bad. It does feel weird knowing more than your doctor though!

If you have a spare $20 that you can afford to part with, consider buying and gifting them with a copy of "Clinical Management of Restless Legs Syndrome." It's not as current as I'd like, having been in print for several years, but it's the best thing out there for a doctor who isn't educated about it. It was written for PC physicians. Dr Buchfuhrer, one of the authors, said he's currently revising it, but he didn't say when the new one would be published.

[Polar Bear]

I also educated my GP and he was more than happy with this.
Said I had more time to research than he did and he was grateful.
He even went onto Dr B's site and rang me at home while on the site so that I could speedily direct him to the particularly relevant sections.

[badnights]

I gave one of my doctors a copy of Clinical Management of Restless Legs Syndrome. He was reluctant to take it at first (probably thinking he could better afford it than I ) until I explained that I had ordered an extra copy specifically for that purpose. that the better educated he was about it, the better treated I would be! and other patients he came across as well. The next time I saw him, he had read parts of it and thought it was a great little book. Unfortunately, he left town shortly thereafter; I hope WED patients wherever he is now are benefiting from his knowledge.