RLS from head to toe!

Whether new to RLS or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
Post Reply
wyldaeval
Posts: 7
Joined: Fri Apr 11, 2014 7:20 am
Location: Mississippi

RLS from head to toe!

Post by wyldaeval »

Hi all. Recently joined here and will try to keep my history as brief as possible. I've had RLS for many years now and it's become a daily thing. It starts in the early evening and now begins in my shoulders and arms as well as my legs. The "creepy" feeling in my legs drives me nuts, but the involuntary shoulder dancing is really getting to me. I'm on a low dose of Mirapex as it's the only thing that helps and I don't know what I'd do without it, but my doctor just cut my dose in half and now it isn't working as well as it once did. I have a host of other physical problems as well as major depressive disorder and anxiety so I'm on several meds. Fibromyalgia/CFS, Degenerative Disk Disease, Osteoarthritis, Type 2 Diabetes, Asthma, and others. It's now 8:51am and I haven't been able to sleep yet. I'm thinking the doc needs to replace the Mirapex with something else for awhile. Taking nothing for this is not an option. I tried it once before and felt like I was going to lose my mind. My worst experience with it so far was taking a flight out to CA from MS without any meds for it. It was a nightmare. I drove the passengers next to me crazy with my twitching and had to pace up and down the isle while the passengers looked at me like my cheese had slipped off my cracker. I never want to do that again. I'm looking for viable treatment options and considering an iron supplement, which I plan to discuss with my doctor soon.

Happy to be here among people that understand and hope to learn more about my treatment options through other people's experiences. My name is Victoria.

Polar Bear
Moderator
Posts: 8799
Joined: Tue Dec 26, 2006 4:34 pm
Location: United Kingdom

Re: RLS from head to toe!

Post by Polar Bear »

Hi and welcome, you have a lot going on. And many of us are in a similar position in that we are coping with multi health issues. I also have symptoms in my arms and legs as well as legs, have fibromyalgia and osteo arthritis, with a few other gems thrown in for good measure. We do understand how you suffer and you really do need a doctor who is either versed in treating WED/RLS or is willing to take on board any well sourced information that you take to him/her.

You have a major depressive disorder and anxiety, so you probably already know that most of these particular medications can aggravate your WED symptoms. However, if these medications are essential (and it sounds as tho they are) then it's a case of taking enough WED medication/the correct WED medication that works for you to compensate for any WED aggravation that there may be.

With regard to your Mirapex can you tell us what dose you were on, why your doctor cut it in half, and what dose you are taking at present.
If it helped, why cut it? The very act of cutting it is likely to have upped your symptoms.

Regarding your osteoarthritis, has your doctor provided you will medication to help with this. The lower end opioids such as Tramadol/Ultram or Cocodamol which may be given for arthritis can be very helpful to your WED symptoms.

Iron Supplement - Have you had your ferritin serum level checked. This tells the level of your stored iron and needs to be requested, it isn't usually done routinely. Normal can be around 20, as a sufferer of WED you will want it to be up around 100, especially when taking mirapex (a DA).
You can attempt to raise your ferritin by taking oral iron supplements. The sulfate or fumarate is generally more effective than the gluconate, but any of them should be taken with vitamin C to maximize absorption.

Other medications are the anti-convulsants which are commonly used for WED ---- gabapentin/Neurontin, pregabalin/Lyrica, and gabapentic encarbil / Horizant. These don't seem to do a good job of controlling all symptoms, but for many people work well in combination therapy.

Then there are the opioids are effective in controlling most symptoms but sometimes have bad side effects. WED patients are not likely to get addicted to them, provided they are used in the amount prescribed or less and only for symptom relief. But, most doctors are reluctant to prescribe them.

Sooo..... Is your doctor eager to help you.
Have you tried other medications for WED apart from the Mirapex.
Why has doc cut the Mirapex.
Are you on other medications for other medical issues
How is doc dealing with your insomnia.... could you sleep if your WED symptoms were under control.

If you go to the WED Foundation site www.rls.org - At the top there is a heading 'About WED/RLS'. Click on this and go down to Publications. There are relevant publications that you could print out and use to discuss with your doctor. In particular Causes, Diagnosis & Treatment.

And yes, the flights are horrendous. In a couple of weeks I am flying UK/Newark/West coast USA in the one day, but I plan on extra medications to help and will (hopefully) be seated near the galley for walking space.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

wyldaeval
Posts: 7
Joined: Fri Apr 11, 2014 7:20 am
Location: Mississippi

Re: RLS from head to toe!

Post by wyldaeval »

Hello, Polar Bear, and thank you for your response. I've notice that many RLS sufferers also have fibro. My fibro had been in a sort of remission state until about 3 years ago when I was in a 4wheeler accident and broke my right hand, which was followed by an accident in my truck the day after having my cast removed. I'm sure it made my DDD worse as well, my cervical spine being in very bad shape. I also had to have a couple of surgeries which increased the fibro flare symptoms. At that time, the RLS was more manageable than it is now.

As far as the medications, I was on Mirapex 0.5 2xd for the increase in symptoms, per my regular family doctor. Two tablets were necessary due to my odd sleep schedule. I was existing on naps and not getting true restorative sleep. A new doctor at that clinic cut me down to 0.5 at 1/2 tablet 1xd. I'm considering requesting Requip to replace the Mirapex. I think the doctor is worried about side effects and augmentation on the Mirapex, but he wasn't very forthcoming with his reason for lowering my dose.

We tried Neurontin and the lowest dose made me so dizzy, I'd walk into the walls fairly regularly on my way down the hall to the bedroom. One morning, as I was finally ready to sleep, I walked into the wall nose first. The sound (a cracking noise) was so loud it woke my husband out of a sound sleep, and he's on a C-Pap machine and doesn't usually hear anything while sleeping, so no more Neurontin. My nose wasn't broken, thankfully, but it was pretty well banged up.

I also take Xanax, 1 tab 2xd (lowest dose), for anxiety though I occasionally take both tablets at bedtime in order to sleep, and Celexa, 40mg 1xd, having been recently increased from 20mg due to a dangerous increase in my depression. The doctor said that he would get me back down to 20mg per day within 2 to 3 months. I'm not sure why. As for using the Xanax to sleep, I'd tried the newer sleep medications and found myself awake in the middle of the night doing various things such as cooking and then having no recollection of it the following day, so they aren't an option.

As for the pain killer, I'd started out on Tramadol and felt no relief from the fibro pain prior to the accidents or the neck pain (post accidents) and was put on Vicodin, which provided some relief for awhile but it didn't last and the acetaminophen level was too high for my fatty liver to tolerate. The neck pain increased, as did the fibro pain, and I was sent to a pain clinic where they took me off Vicodin and replaced it with Percocet. I wouldn't be able to function in any capacity without the Percocet. I've recently had a nerve ablation in my neck to reduce the pain and make it possible to reduce the amount of Percocet I take daily, which was one 7.5/325 tablet 3xd. Since the ablation, I've been able to reduce that to one tab 2xd. I'm allergic to most Nsaids and Ibuprofen.

I've very recently been prescribed Provigil because my energy level was nonexistent. I could manage to move from the bed to the recliner, but was unable to do any household chores and kept falling asleep at unpredictable times during the day. I fell asleep while driving so often that I stopped driving and my husband had to take time off from work to take me to doctor appointments. I'm on other medications as well for the diabetes, idiopathic edema in my feet and ankles, hypothyroidism, and on 50,000 IU of vitamin D 2xwk. My vitamin D level was at 6 ng/ml when it should have been at least 32 ng/ml, on the low side of normal. It's at 20 ng/ml now after 2 years on the vitamin D at 50,000 IU 1xwk, so it was recently increased to two times per week. I'm from the Pacific Northwest. We don't tan there, we rust. :? Many years of night shift work made matters worse in regards to getting enough exposure to sunlight.

I have no desire to be on so many medications, but at this point there doesn't seem to be any other answer. Chiropractic is out of the question since it would likely do more harm than good and I've tried physical therapy but was left bedridden for one to two days after each workout. I'll eventually have to have surgery on my neck to stabilize the vertebrae.

Polar Bear
Moderator
Posts: 8799
Joined: Tue Dec 26, 2006 4:34 pm
Location: United Kingdom

Re: RLS from head to toe!

Post by Polar Bear »

Oh my, I'm sorry you are in such pain from so many different conditions.

It's surprising just how many people say that a trauma to their back and/or surgery have made their WED worse.

And yes, augmentation is a concern with the ADs such as mirapex and requip/ropinerole but on the other hand, in my own opinion, we also need to take sufficient medication for it to work and relieve our symptoms - but only enough that it works. Any concerns about augmentation with mirapex would also apply to requip as they are both the same class of meds.

I have not ever used the anti seizure medications. My understanding is that the side effects such as the dizziness usually settles within 3 weeks. Your incident when you banged your nose would make one wary.
I started with requip, my symptoms are 24/7, and it was never sufficient. My dosage is at 4mg spread over the 24 hours and is now supplemented with Tramadol and cocodamol. There was a time when 4mg requip was considered ok daily but no longer, this dosage is too high and is more likely to cause augmentation.

Even if your anti anxiety medications are causing a negative effect with your WED symptoms it is necessary to take what AD is needed and adjust the WED medications accordingly.

I wonder did the vicodin/tramadol/perocet taken for your pain, also help your WED/RLS symptoms.

There is an excellent book The Clinical Management of Restless Legs Syndrome (second edition) by Buchfuhrer, Lee, Allen, Hening. It is around $20 on Amazon. It is easy to read and very up to date. An excellent book to show your doctor. Mine is full of highlighted sections, post-its, stars, pencil comments and my GP is willing to follow the guidance therein.

I would fully recommend you get the book, or print out the documents on the Foundation site, as previously mentioned. Docs are more likely to cooperate with information if it is from a reputable source.

A willing and cooperative GP is a friend indeed.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

wyldaeval
Posts: 7
Joined: Fri Apr 11, 2014 7:20 am
Location: Mississippi

Re: RLS from head to toe!

Post by wyldaeval »

The book sounds like a "must read" in my case. Thank you very much for recommending it to me. I'm sure my GP will be very open-minded and listen to my concerns. He's been great so far and we've had a good doctor/patient relationship since my move from the west coast seven years ago.

The pain meds don't seem to have helped my RLS symptoms. If they have, I hate to think how bad it might be without them.

I'd tried requip several years ago but it was too expensive at the time and my RLS wasn't nearly the problem it is now. I'm afraid it will only get worse with age, but such is life. For the time being, I'm just very happy to be able to have some semblance of my former life back. I'll never be employable again, and I'm okay with that, but I'm not okay with being bed or chair bound and having no good quality of life.

One thing all of this has taught me is to let go of the unnecessary stress in my life. Material excesses, drama queens, arguments about most anything. I don't have the time or energy for that and I've finally started putting myself first. It was a long time coming. Not to sound like an AA cliche, but I take one day at a time now. Some days it's more like one moment at a time.

I may actually be able to sleep soon. We shall see. :)

Polar Bear
Moderator
Posts: 8799
Joined: Tue Dec 26, 2006 4:34 pm
Location: United Kingdom

Re: RLS from head to toe!

Post by Polar Bear »

One thing all of this has taught me is to let go of the unnecessary stress in my life. Material excesses, drama queens, arguments about most anything. I don't have the time or energy for that and I've finally started putting myself first. It was a long time coming. Not to sound like an AA cliche, but I take one day at a time now. Some days it's more like one moment at a time.

I like this.... I think in the last year or so I've started to get there myself.
Material excesses... can't be bothered.
Drama Queens.... aaaggghhhh.
Arguments.... don't do them, never did.

Hope you got some sleep.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
Moderator
Posts: 16571
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: RLS from head to toe!

Post by ViewsAskew »

One of the difficulties in treating WED is when there are other conditions, especially when some are similar to WED. It can be SO hard to decide which is what and how to get the best treatment plan.
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.

badnights
Moderator
Posts: 6259
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: RLS from head to toe!

Post by badnights »

Hi Victoria

while the passengers looked at me like my cheese had slipped off my cracker

lol I hadn't heard that one before!

It's dreadful, isn't it? This disease, that no one understands except other people who have it. And you have so many other things as well! They seem to travel in bundles like that, I got asthma and sciatica at the same time as the WED/RLS went into overdrive. I still in my mind blame it all on a spider bite.

Have you had your ferritin levels checked? Taking oral iron can actually reduce your symptoms, if you can manage to take enough to raise your ferritin over 100. and in fact no one should be taking Mirapex or Requip unless their ferritin is over 100/

your doctor sounds like a godsend, he's probably worried about augmentation. Just tell him the symptoms are not being controlled - maybe he will up your opioid meds, which would help the WED a lot. btw Percocet has acetominophen in it, is that necessary for the fibro? Woudln't plain oxy be better?

The pain meds are undoubtedly helping your WED, and you should have this knowledge in your head, because if their dose is reduced for eny reason, your WED symptoms will get worse. I can guarantee you that. If you have WED/RLS and are taking opioids for something else, those opioids are masking your WED symptoms (in a beneficial way), and your symptoms will be stronger if the opioids are reduced. This is certain.

I've finally started putting myself first. It was a long time coming. Not to sound like an AA cliche, but I take one day at a time now. Some days it's more like one moment at a time

good one I know what you mean. I have changed since this disease got its hooks in me, and not all for the worse. I am probably a nicer person because of it, but never, ever would I choose it - never. I would rather be a nasty person! lol
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Post Reply