Hello from TeriShelly

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TeriShelly
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Joined: Fri Feb 12, 2016 6:15 am
Location: Wales
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Hello from TeriShelly

Postby TeriShelly » Sat Feb 04, 2017 12:14 pm

Hello. I joined this board a year ago but this is my first post. Nothing like a slow start. I've been struggling with RLS for about 6 years now. Started with husband noticing my legs doing rapid kicks in the night (I seem to have PLMD too). At that stage I starting to feel uncomfortable going off to sleep but could cope with it and slept through the kicking. But that stage did not last long. Very quickly I started getting surges through my legs that were absolutely unbearable and could not be slept through and I now have severe RLS every night - there is no respite. I take 2 X 0.088mg of Pramipexole a night. Symptoms getting worse - starting earlier in the evening, tablets wearing off quicker. So I recently decided to tackle this head on by changing diet with the goal of getting off the meds (I fear augmentation) and I started a blog to chart my journey. The diet changes proved difficult (poor willpower particularly when I'm so tired all the time) but the whole thing has given me renewed focus to research this condition and explore every possible avenue for a solution. And this led me back here.

I'm currently trialing daily NAC Cysteine (to deal with Glutamate), Calcium, Magnesium and Vit D as general supplements and Iron at start of day and then when symptoms start in evening. Trying to drink more black tea for the L-theanine and less caffeine. Tonight going to try a eucalyptus oil blend on the soles of my feet as that's something else I've recently come across. I've previously tried soap, molasses and bicarbonate of soda and lots more besides.

In terms of expert medical advice - Doctor does not understand. Has given me Pramipexole but does not seem to know about augmentation and I had to push to get Ferritin tested. He says Ferritin is ok as it's within range but it was around 40 when last tested. I ended up getting Ferrous Sulphate tablets (although didn't see any improvements) and now I'm trying Floradix tonic (Iron & B vits). Last night when symptoms started I took 10ml of Floradix and symptoms did ease (but that was on top of 2 Pramipexole). I don't think I sleep well (very little deep sleep) and I'm often up at 4 in the morning. Increasingly feel totally worn out but when I try to talk to people about it they say things like "Oh yes I get that sometimes" and I feel like screaming because I don't think what they get is what I get because if it was I don't know why they are not screaming their heads off too (possibly lack of sleep is making me cranky). I find I'm going down with more and more colds and I think lack of sleep is affecting my immune system.

Sorry long hello. Just wanted to become part of the community here as I feel I need people around me who understand. I'm also part of a Facebook group which is helping. And I'm charting my own progress on my blog but that's getting more and more embarrassing as I'm basically not making any progress and I'm trying something new everyday. But hey ho. I will keep going with it & with my fight against RLS. But it's a terrible condition that often makes me feel very very sad.

stjohnh
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Location: Palo Alto, California

Re: Hello from TeriShelly

Postby stjohnh » Sat Feb 04, 2017 2:25 pm

Welcome TeriShelly. Don't worry, everyone here "gets it" and you will find lots of help, understanding and compassion here. Your med problems, exhaustion, depression, low energy, weakening immune system etc. all sound similar to what I and most others here have experienced.

Most docs that are not neurologists or sleep specialists know next to nothing about augmentation. So your doc is not out of the ordinary. If your doc seems helpful and willing to work with you, it may be helpful to take some of the printed materials from the RLS foundation web site to your next appointment.

Your dose of pramipexole is fairly low and low doses are much less likely to cause augmentation. Your symptoms increase could be just progression of RLS.

Your ferritin was low (you want it over 100) so I think you should take ferrous sulfate three times daily with vit C for a few months and try to get your ferritin up.

The fastest simplest way to get relief probably is to add kratom to your current dose of pramipexole. Kratom is an herbal remedy that has opiate like effects but fewer side effects than prescription opiates. You can have it in your hand in two days if you order today. You will get other suggestions from others soon, but I definitely would not increase your pramipexole dose.

There are two sleep issues with RLS. The first is obvious. Your legs jump and you gotta get up or they won't stop. The second is intrinsic to moderate and severe RLS. Can't sleep even though leg jumping is controlled with meds. RLS sleeping problems never seem to respond to prescription sleeping meds, so don't bother wasting time asking your doc for sleeping pills. The most consistent way to improve sleep is with gabapentin and/or medical marijuana. Even so, people with RLS rarely get back to normal, fully refreshing sleep.
Blessings,
Holland

Rustsmith
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Re: Hello from TeriShelly

Postby Rustsmith » Sat Feb 04, 2017 9:44 pm

Welcome to the board TeriShelly, even if it has taken a year for you to get up and running with us.

In addition to the great advice that Holland has provided, I would like to offer a few more comments and/or suggestions.

Trying the various supplements and vitamins is worth a try. If you are deficient in one or more, then fixing that deficiency can help reduce your RLS. But the only one that has the greatest chance of helping is the iron since RLS is now believed to be associated with an iron deficiency in a specific portion of the brain. Increasing ferritin iron levels helps many people, but not all of us. With a ferritin level of 40, you definitely need to increase it. But please understand that increasing your ferritin by taking any form of iron pill is going to take time. It could be weeks or months, but it will not be days.

One thing that you did not mention as something that you have been trying is soaking your legs in either very hot or cold water. This provides temporary relief for a great many of us. I can either use a very hot shower or soaking just my legs in water that is as hot as I can stand it. This often relieves the movement issues long enough for me to fall asleep. I then hope that the gabapentin and medical marijuana that I take at bedtime will allow me to get a "full" night sleep.

As for your doctor, you probably have two choices. One is to request a referral to a neurologist who is familiar with treating RLS. Not all neurologists "get it" when it comes to RLS, so you might need to try several. Neurologists who specialize in movement disorders are the ones who are most likely to understand. You could also check the RLS Foundation's list of Quality Care Centers to see if one of them is close to you. The doctors at these centers are some of the best in the country, so getting an appointment there requires some patience but is well worth it.

The second option would be to work with your current doctor to educate him/her in the treatment of your RLS. The RLS FOuncation documents that Holland described are good for this. An additional approach that some have had success with once they find their doctor is receptive is to provide the doctor with a copy of the second edition of the book "Clinical Management of Restless Legs Syndrome" by Lee, Buchfuhrer, Allen and Hening. It is available from Amazon for about $25. The authors are all recognized experts in the proper treatment of RLS. The book is also easily understood by those of us who do not have medical training, so you could also learn quite a bit from it.
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: Hello from TeriShelly

Postby ViewsAskew » Sat Feb 04, 2017 11:10 pm

Just saying hi and I OH-SO-GET-IT! Lots of great people here. Some people use the board to vent, some to learn, some both, some to make friends - whatever works. Sorry you had to find us - glad we are here for you.
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.

legsbestill
Posts: 349
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Hello from TeriShelly

Postby legsbestill » Sun Feb 05, 2017 12:38 am

So sorry that you have this miserable condition TeriShelly. You are definitely in the right place and seem to have picked up a lot of information in your year of 'lurking'. You already seem to know more than your doctor! I have recently started taking kratom and really like the fact that it can be taken more on an 'as and when needed' basis than a lot of the more conventional drugs so would second Holland's recommendation. It is definitely worth getting your iron levels up also - my symptoms have improved out of all recognition since I did that - and hopefully yours will too. In my experience learning how to cope with rls is very much a journey and coming on this website has helped me enormously. Everyone on here totally gets what you are going through.

ViewsAskew
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Re: Hello from TeriShelly

Postby ViewsAskew » Sun Feb 05, 2017 1:58 am

One thing to add about ferritin levels. At 40, I have horrible symptoms. At 70, same. When it's over 100, I have someone reduced symptoms, maybe 15%. I have to have it up over 200 before I seem a 50% reduction. A lot of this knowledge is really very new - that there may not be a standard serum minimum - that for those of us it helps, it may be a different target from person to person.
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.

Rustsmith
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Re: Hello from TeriShelly

Postby Rustsmith » Sun Feb 05, 2017 5:04 am

And for what is hopefully a minority of us, no amount of serum iron is going to reduce our symptoms. My last ferrtin number was over 350 and my RLS is just as bad as it was when it was 40. For this subset of us, the limiting factor is possibly a defect in the protein that transports the iron from the blood across the barrier into the brain. In that case, increasing ferritin levels may help stave off augmentation but they are not going to help with our movement symptoms.
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
Moderator
Posts: 14889
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Hello from TeriShelly

Postby ViewsAskew » Sun Feb 05, 2017 6:03 am

Crazy disease, isn't it? In some ways, I am not surprised at all that GPs do not get it. Specialist don't get such a pass, however!
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.

TeriShelly
Posts: 5
Joined: Fri Feb 12, 2016 6:15 am
Location: Wales
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Re: Hello from TeriShelly

Postby TeriShelly » Sun Feb 05, 2017 6:16 am

Thank you everyone for your lovely welcomes and great advice. Yesterday I bought the book you mention Steve, it arrives today from Amazon so I'm going to use it to educate myself and then hopefully my GP. I will focus on getting the Ferritin up to see if that helps. One thing I noticed yesterday - I took the iron tonic (just 10mls) when my symptoms started in my left leg at 5.45pm and by 5.50pm my leg had calmed down. But an hour later the other leg started.

Holland - you suggested Kratom and I have been browsing the board to find out more about this. Would you suggest I take it with the Pramipexole so eg take my two Pramipexole at 5pm but then when I sit down and find the legs jumping take the Kratom then or would I hold off and try and take it right before I go to bed?

Polar Bear
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Re: Hello from TeriShelly

Postby Polar Bear » Sun Feb 05, 2017 2:33 pm

Welcome TeriShelly - I note you are resident in Wales and I know there was talk last Spring 2016 trying to making it illegal in the UK. I've looked online and find the information confusing as to whether it actually is or is not illegal here in UK.

With regard to soaking legs in extremes of hot or cold water, I'm in the cold camp. A big bucket of icy cold water and get those feet and calfs/legs in there. It usually takes about 20 minutes including drawing the water up the legs as far as possible.

Great that you've bought the book. Mine has many areas of pencilled comments and markings. It often travels with me to a Dr appointment and I'm glad to say my GP is also willing to read documentation printed off from the Foundation Site. GP admitted he knew little about RLS and was glad of guidance.

Also, there are no Quality Care Centres in the UK.
If your GP is willing to learn he can be your best friend if you both use the above mentioned book and relevant Foundation documents for education and guidance.

I have also used the soap, snake oil, copper bracelets. As a sufferer of some 30+ years my symptoms were affecting both arms before ever I started taking prescibed medication and I have long accepted that I need medication.
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

TeriShelly
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Joined: Fri Feb 12, 2016 6:15 am
Location: Wales
Contact:

Re: Hello from TeriShelly

Postby TeriShelly » Sun Feb 05, 2017 3:17 pm

Yes just been googling kratom and does seem to be illegal now so can't use that. Book has arrived and can already see how useful it's going to be. Plus reading it feels oddly comforting- have something now I can show the Dr to inform the discussion.

Polar Bear
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Re: Hello from TeriShelly

Postby Polar Bear » Sun Feb 05, 2017 3:49 pm

:thumbup: :thumbup: Book is excellent.
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

stjohnh
Posts: 324
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Hello from TeriShelly

Postby stjohnh » Sun Feb 05, 2017 3:50 pm

TeriShelly, sounds like you may be taking the pramipexole when your legs start jumping in the evening. If so, that may not be the best time. You are less likely to augment if you don't try to completely eliminate jumpy legs. Your goal should be to eliminate intolerable symptoms and learn to live with those that are simply annoying. I start getting jumpy legs some time between 3pm and 6pm. But I don't take my pramipexole until 90 minutes before planned bed time. I walk around and stand a lot between when jumpy legs start and when the pramipexole starts to work.

Augmentation is thought to be caused by severe downregulation of dopamine receptors in your brain. RLS patients have too much brain dopamine to start with, and pramipexole "beats up" those already traumatized dopamine receptors. Allowing a period of jumpy legs helps prevent further overload of the dopamine receptors.

Too bad about not being able to get kratom.

Your best option at this point may be persuading your doc to prescribe gabapentin. The combination of gabapentin and pramipexole (or, though unlikely to work well enough, gabapentin alone) may be enough to get you through the night. Be sure to resist the temptation to increase your pramipexole dose. Ideally you want your pramipexole dose 0.125 mg or less.
Blessings,
Holland

legsbestill
Posts: 349
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Hello from TeriShelly

Postby legsbestill » Sun Feb 05, 2017 5:58 pm

Although I would like to distance myself from any conduct that is not strictly lawful, I would point out that an individual known well to the current poster, who resides in another country, quite close to the UK, where kratom may not be legal (the individual is not keen to be advised catagorically as to the legal position), has discovered a website in the Netherlands which is prepared to ship kratom to areas where it might not be wholly legal. The kratom has been in good condition when it has arrived (I am informed) and has been of good quality. I can reveal the name of the website to any interested parties. They ship in fairly annonymous packaging and it is difficult to see why they would be intercepted by the forces of law and order (so I am told). They also ship in small-ish quantities so that the product can be tried without commiting to a large expense. In the interest of balance I should also say that the individual is normally very law abiding but has been demented with rls and is keen to try all possible channels to reduce his/her reliance on more powerful opiates which may be causing central sleep apnea and other unpleasant/potentially dangerous side effects.

stjohnh
Posts: 324
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Hello from TeriShelly

Postby stjohnh » Sun Feb 05, 2017 8:04 pm

If you do try kratom, buy a small amount of red vein Borneo kratom. If you get it I will give you hints and details on how to try it.
Blessings,
Holland


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