Restless Legs Syndrome
9,359 members5,762 posts

RLS for 13 years

Hi I'm new here. I have suffered with severe RLS and PLMD for 13 years, diagnosed 2 years ago by a sleep study. I have tried natural remedies, iron and magnesium supplements, copper bracelets, and have been prescribed many medications unsuccessfully including ropinerole, clonazepam, nitrazepam, melatonin, rotigitine patches, pregabalin, zopiclone, zolpidem. Nothing knocks me out or helps me get restful sleep. All meds I have tried seem to just make me agitated and not help. Sometimes I can't fall asleep at all, other times as soon as i fall asleep i wake up only to fall asleep and wake up again instantly and i can be caught in that cycle for hours. The same thing happens if i nap during the day. I start to dream before ive properly fallen asleep and dream constantly if i do manage to sleep for a short period of time. I have not had a proper nights sleep in 13 years and to say it's taking its toll on me would be an understatement.

34 Replies
oldestnewest

That's a hard road to have been travelling .

It's difficult to know where to go after all that.

I presume you've read the information on

rls-uk.org

And

rlshelp.org

For all the triggers that might cause sleep hindrance- antihistamines, caffeine in all its forms- coffee , tea chocolate fizzy drinks and so on?

All the various sleep hygeine tips - no excitement or stress in evening. Take magnesium at supper , no electrical stuff in bedroom , declutter your mind before bed- make a job list for next day- no churning! Use sleep inducing music on timer to help relax - LennyCohen does it for me - or Deva Premal.

If it started 13 years ago- did something change in your life- trauma , change in lifestyle, medication, At that time?

Hope this gives you some pointers.

Cheers.

4 likes
Reply

Yeah Ive tried all that, it makes no difference unfortunately. Ive tried holistic treatments too as well as hypnosis, meditation, binaural beats, nature sounds etc, none of it helps.

yes 13 years ago I gave birth to my daughter and my issues started soon after that.

Thanks for your reply x

1 like
Reply

If it's related to pregnancy- especially if you experienced rls during third trimester- then it could be due to iron depletion - which affects a number of pregnancies - usually dissappering after birth.

Have you been tested for Serum Ferritin? And have the result? It should be 100 or over- don't accept " normal".

If this is the case - ie below 100 , then iron supplements would be worth a trial.

People here advise fer bisglycinate or " Gentle Iron" 25 mg on an empty stomach at night with vit c ( glass of orange juice). Try that for 3 nights or check with your Dr.

Do NOT over supplement with iron.

Hoping this gets you further on the road to recovery.

Cheers.

The long term use of anti depressents will almost certainly have triggered rls during that time- and it may take a while to recover from their effects.

3 likes
Reply

I didn't experience RLS until after giving birth. I've had all the tests, they had me on iron tablets for ages even though ive never had low iron, which made no difference whatsoever apart from making me extremely constipated, the sleep clinic don't know what to do with me, they referred me for an iron infusion 6 months ago which the appointment I have is next week as that is the only thing they haven't tried. They said after that if it doesn't work theres not much they can do.

1 like
Reply

I'm inclined to agree with them- apart from what I've suggested earlier re triggers.

Cheers.

Reply

Don't give up...

Reply

Oh dear. I wouldn't let them get away with saying there is nothing they can do. I'm so sorry they said that! Talk about stressing you out! I was recently "dismissed" by my neurologist for being "a psychiatric mess" (my words). It did NOT feel good, to say the least. Do you use a CPAP? Have you heard of PLMD? My inbox is always open.

P.S. I talked to someone at the conference who said he looks at the resumés before going to a specialist and, if they don't have RLS studies of some kind in there, he asks to see someone else. After I told him that my neurologist is a specialist in RLS without the ability to think outside the box, he told me to get someone without a box. You need someone who understands every aspect of RLS (and who thinks outside the box). Everyone has different experiences.

Stay strong,

2 likes
Reply

Yes I have PLMD too. Im currently under sleep specialists and they have tried a lot of things and they do listen and are really helpful and understanding but they have exhausted all the usual treatments, but I won't let them discharge me. No I don't have a CPAP (the oxygen thing, right?) But I don't have sleep apnoea. Thats a terrible thing ur neurologist said to you. As a rule I don't get on very well with doctors ive had too many bad experiences. X

1 like
Reply

Good for you! Don't ever let doctors discharge you before YOU are ready! If they do for whatever reason, have them give you another referral. Ask for a second opinion.

Yes, a CPAP is the breathing mask. Since you don't have sleep apnea, though, you don't need it.

BTW, my neurologist did not directly tell me anything mean. Rather, it was his body language and looks that "told" me I was being difficult and obnoxious. It was NOT cool!

1 like
Reply

Hi Jess3648. Welcome back. Hope you (and your legs) enjoyed your trip. Love that guy's philosophy about the box.My sentiments exactly. I am being referred to an endocrinologist which brings an unknown doctor into my fold. He may be wonderful or not but I have already written on an index card what I will say to him on the first visit (paraphrasing here). My key points are-before he begins his recommendations- 1) I believe very strongly that we are partners in my care; I will bring my suggestion-with info where I got them to each appointment 2) I expect to be listened to with respect and not dismissed, 3) I will always be honest with him about what I try on my own and with my feelings about his recommendations, 4) I prefer to begin treatments/ meds with the least invasive and work up from there, and 5) I don't like to use prescription meds as a first line of treatment. 6) I don't want to waste a lot of time with side effects that have to be resolved before we start again. If he/she feels like we would be a good fit then let's get started. If not, please recommend someone in your group who might be better suited to my way of thinking. There will be no hard feelings and I will appreciate his honesty. For me, it's a given that he has much medical knowledge but a good philosophical fit is just as important. We'll see how it goes. I actually think this approach with new physicians is often more appreciated than we know.By the way, I will answer the nurse's basic questions, let her take my blood pressure etc but I save my medical conversation for the doctor. (I'm certainly opinionated but this approach-for me- saves time and cuts to the chase!). By the way, I will say all of this in a friendly way (more flies with honey). It just sounds terse on paper.

1 like
Reply

Thank you. I had a goood trip, but it was sullied by having a travel companion who had legs with a mind of their own 😁 (I traveled alone, so I'm not quite sure who that was...). Oh well, I'm glad to be home. (And apparently so is the apartment that is now messy -- apparently, when I left so did my husband (mentally)). It's cool, though! It's not like I was bothered by the dead bug in the entryway (being facetious here). 😁

Ok, thanks for the tips re dealing with doctors. I'll remember that.

1 like
Reply

I love your humor. I'm always amazed how men can tear up an apt faster than we can get out.LOL (Sorry guys, we love you anyway) PS I would love for patients to really feel they are equal to all doctors even famous. If they don't like dealing with us, find another career. Though most I've worked with and had as caregivers have been great.

Reply

Thank you! I think it's wonderful to have a plan with your doctor. Think I'll try this.

Reply

I have suffered with rls forever. Never had anything that would make me sleepy. Finally my neuro. put me on horizant. Works miracles for me. Sleeping for first time in many years. maybe worth a try.

Reply

I just read this again. I'm confused re Ferritin. The neurologist speaker at the conference said 75 is good. She said that she actually stops seeing people's Ferritin as an issue if it's 75 or above.

1 like
Reply

I'm not sure what conference you are referring to - rls uk?

But ,as John says below , iron/ ferritin is not a clearcut issue. 75 would be regarded as marginally low for rls on this site- I would be looking for 100 to 150 to be certain.

It certainly seems as if something around your pregnancy has triggered the attack.

Cheers.

Reply

Yes

1 like
Reply

I've read so many websites about the best ferritin number to have and they all seem to have their own opinion. Even different hospital labs have different normal ranges. I guess we just have to get it into high normal and see how we feel. I personally think 75 is too low. Mine was originally 60 and from what I've read, I'm aiming for 100 then see how I feel. I'ii be looking not only for rls improvement but also less fatigue, clearer thinking and other improvements that higher ferritin levels should provide. Will also work with my primary doctor on this; she's very astute and has an open "no box" mind. So that's my goal. Have a bunch of various Dr. appts coming up in the next2 months so I'm sure someone will check the ferritin and then I'll have a better idea what # to aim for. Trial and error' trial and error.

1 like
Reply

I agree about the long term antidepressants. It has turned out to be a big trigger for me. I was started on the SSRI-Prozan (Fluoxetine) many years ago when it first came out. It was touted as a 'miracle drug' for depression and many people besides myself were started on it. Many years later side offects have come to light that it is not as harmless as we all thought. One reason I am leary of new drugs is that they have not been around long enough to see what harm they can do over the long haul. I wish I had never taken Prozac. As I see it, through my research, as one of the contributing factors to my rls. Some doctors agree, some are dismissive.

2 likes
Reply

First of all: welcome! You'll get lots of support here!

Secondly: Assuming that your symptoms have gotten worse, I have the same question as Madlegs1 -- did something happen recently (if so, you don't need to go into detail if uncomfortable, but rather just answer yes or no). Stress can exacerbate symptoms. Also, are you on any medication (especially antidepressants) that could exacerbate RLS?

Take care,

1 like
Reply

My issues started shortly after giving birth to my daughter 13 years ago.In that time I have been on pretty much every antidepressant available until early this year when i found out anything that increases seratonin or inhibits the reuptake of seratonin, depletes your dopamine, exacerbating RLS. Drs have just been giving me them not bothering to even tell me, it was my sleep dr that told me and he recommended i go on one called zyban (Wellbutrin in the states) its off license for depression in the uk, i had already requested this from my gp previously and been refused but was prescribed it on the sleep drs say so. I had to come off it as i have tinnitus and it made the ringing in my ears unbearably loud. So now I don't take any meds for depression or RLS.

Thanks for your reply x

1 like
Reply

You are so welcome!

In regards to pregnancy: One of the conference speakers did go over the results of a pregnancy survey in connection with RLS. Apparently, pregnancy can be the start of RLS for some people. Hopefully someone will chime in here since it is more common than I thought.

Regarding the antidepressants: Please message me (if you want), as I want to help in any way I can. I'm on 3 different ones myself (Wellbutrin is one of them).You can do this by clicking on my username and "message" on the top right.

Take care,

Reply

Thanks so much for all your replies. Ironically I didnt have a problem during my pregnancy it was afterwards that it developed, I had an extremely traumatic labour and birth, extremely painful, even epidural didnt work on me. X

Reply

Hi Glitterbug, Earlier today I was doing my usual perusing around the net and came across some information I wan't aware of. Apparently, there is some new thinking about depression causes. What I found is new research talks about depression being caused by low dopamine rather than lowserotonin. Actually they both can be causes but I read that if your depression isn't helped much it might be because that serotonin might be the wrong neurotransmitter to be working on. This made sense to me because I always wondered why I didn't feel as good on Prozac as I thought I should. So maybe dopamine is the one I should be trying to raise. Just a thought. If I were you, I'd try googling something like can low dopamine cause depression and see where it leads. Hope my (sometimes off the wall ideas help).

Reply

Tried Tramadol?

Reply

I can't take anything that affects the reuptake of seratonin.

Reply

Tramadol and other opiates help RLS for the vast majority of patients. I can't see any opiates on the list of meds you have tried so that would be something to try x

Reply

Curious that they are trying an iron infusion - Ferritin levels must be marginal. From Johns Hopkins "The single most consistent finding and the strongest environmental risk factor associated with RLS is iron insufficiency." Note - they say insufficiency not deficiency. It's clear that you can have adequate serum Ferritin, but it's not making it into the brain. Newer supplements are non-constipating and have the ability to cross the blood brain barrier - notably ferrous bis glycinate chelate. hopkinsmedicine.org/neurolo...

2 likes
Reply

Hi DicCarlson.

Very helpful info. Johns Hopkins is often one of my 'go-to' sites for not only rls but for other things. But I missed the 'deficiency' info. Glad you caught it. Thanks, Burma

1 like
Reply

Hello...

I'm new here too but came across you post and I wondered... Have you tried seeing a good osteopath? Sometimes pregnancy and birth can leave your skeleton all "tilted" and things don't go back to sitting the way they should. It's a shot in the dark but maybe worth a try if you've tried everything else? I recently went to an osteopath for a bad back and the things he managed to help were numerous!

I really hope you find something that works x

2 likes
Reply

Hi! Came on this forum to share some info. I've had PLMD since I was 20. I am now 68. I have never had symptoms of RLS!! The only thing that has kept me from suicide is the medication Mirapex. The generic is pramipexole. This is a med that was originally developed for Parkinson's. I started taking it in 2001! At .25 mg. All these years later I now take 1mg in two doses. One at about noon and the other half about 8pm so I can sleep. This drug is cheap and effective.

Also!!!!To all of you who have been told that you can not have PLMD in the daytime you have been lied to! This is nearly a daily occurrence for me . Sitting triggers the movements. Try a long car ride, an airplane trip. Any time being forced to sit for Long time. You learn to take your meds early to cover the extra sitting. That being said, you can live with this obnoxious condition and actually be comfortable most of the time. I hope this helps who ever reads this!

Reply

Great to hear that pramipexole has been so wffective for you for such a long time. And long may it continue to last for you!

Although quite a few people on this forum have suffered augmentation of a DA, we shouldn't forget that often DA's are effective and for a long time too. So, very good to hear yor story.

Would you mind describing your plmd symptoms. I thought they were involuntary movements during sleep. As opposed to the voluntary (i.e. conscious) ones during rls. Do you mean you don't have the rls-urge to move during the day, but you do have involuntary movements? Interesting! I wonder how that works neurotransmitter-wise..... Someone who knows?

3 likes
Reply

My PLMD movements are classic. Mostly on my left. About every 20 seconds my whole leg contracts in an upward jerk with my big toe flexed, ankle rotated in and knee bent. The muscle contraction comes from my hip to my foot. Not painful but can be quite uncomfortable do to the strength of my muscles. Without Mirapex this will go on for hours!! Even if I stand up. I had a hip replacement a year ago and I told my Doc that no matter what else happens I have to have my Mirapex!! Couldn't even contemplate how that jerk would feel on a leg with a big new incision, Yikes!!

Reply

Of all those meds, one that I know that makes RLS worse is melatonin.

Reply

You may also like...