New Uer - RLS Since Young Age

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Ksilver2
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New Uer - RLS Since Young Age

Postby Ksilver2 » Mon May 01, 2017 1:37 am

Hi, my name is Kevin and I am 24 years old. I remember the moment when I first had symptoms of rls. I don't remember my exact age but around 14 years ago my left leg fell asleep as it sometimes does if its in an odd position. My father massaged my leg for me to get the blood flowing and wake my leg up. This is when I noticed that at night, after laying down for a time, my left calf would get a tickle within it that would get stronger as my leg stayed still. This feeling became unbearable if I didn't try and stop it; it almost became painful but not like typical pain. Massaging, stretching, or moving the leg would help reduce this feeling for a few seconds to a few minutes. I still have the same feeling today in the same part of my leg. I am here on this forum because my rls has recently become worse after other medical issues arose. I cannot tell if these medical issues are causing my rls to worsen or if its from the extreme stress and anxiety introduced into my life due to my hypochondriasis. I'm not asking for medical advise (I am seeing doctors as needed) but I wanted to share my story and see if anyone else has had a similar one (the origin story and the worsening due to stress and anxiety).
Thank you for reading,
Kevin

ViewsAskew
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Re: New Uer - RLS Since Young Age

Postby ViewsAskew » Mon May 01, 2017 4:29 am

Hi Kevin - mine started about that age, too. Mine stayed relatively mild for years (but I had movements in my sleep called PLMS - periodic movements during sleep) so I got help for that. The help I received made my RLS worse because my highly educated neurologist didn't know bupkis about RLS, even though he thought he did.

Stress is definitely believed to worsen RLS and many other diseases and conditions do, also. From pregnancy to celiac to MS to medications for other conditions to low serum ferritin or hemoglobin, there are many reasons your RLS could worsen.

While you didn't ask for advice, I think it might help a lot if you did. Doctors rarely know as much as our members do. Some of our members are doctors and nurses who have the disease. Some of us had such poor medical treatment that we had to become experts in it in order to get the correct help.

If you do not get the results that you want from your doctor, do let us know and we will be happy to help you brainstorm.

Welcome to the forum.
Ann - Take what you need, leave the rest

Managing Your RLS

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Polar Bear
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Re: New Uer - RLS Since Young Age

Postby Polar Bear » Mon May 01, 2017 12:18 pm

I do understand that you have not asked for advice but I am desperate to ask have you had your Ferritin Blood Serum level checked and asked for the exact level reading.
Normal may be 20.... but for an RLS sufferer it should be up and around 100.
Betty
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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Ksilver2
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Re: New Uer - RLS Since Young Age

Postby Ksilver2 » Mon May 01, 2017 5:33 pm

Thank you for responding!
Ok, so I just received a call telling me my MRI was normal. Also all neurological tests done on me (there have been 5 separate doctors) came back normal. I also had a CBC blood test, a ct scan, and 2 ekgs that all came back normal. The only thing that was noticeable by a doctor was the pupil size difference and that I had impacted earwax in both ears (has been removed).
Here's the crazy list of symptoms I have had or currently have:
Aniscoria (pupils are different sizes)
Flashing lights when eyes are closed
Minor loss of peripheral vision for a quarter second or less (can occur up to 10 times a day but sometimes never)
Right eye sometimes seems dimmer and sees a different hue
Ice pick like headaches - quick bursts of moderate pain near temple regions
Dizziness - This has been the most debilitating symptom and I was essentially bed ridden for multiple weeks
Twitching in left foot (sometimes right foot too)
What feels like weakness in my left leg and left arm
Increase in rls symptoms in left leg

Please note that I also have severe anxiety initially caused by my first symptom (aniscoria).

I have a follow up with the neurologist in one month but I'm hoping I can rest easy now that I know my brain isn't going to explode and hope these symptoms go away on their own.

Polar Bear, I have not had my Ferritin level checked but I probably should ask in a month if it would be possible.

ViewsAskew
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Re: New Uer - RLS Since Young Age

Postby ViewsAskew » Tue May 02, 2017 1:43 am

How frustrating, K. It can be SO hard to get diagnoses for things that do not fit into routine categories. And I can see how your symptoms would be terrifying and debilitating.

That the RLS is worse doesn't surprise me. Mine is always worse when I have anxiety....or somehow it being worse creates anxiety, not really sure. Mine is always worse in one leg and sometimes is only in one leg.
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
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Re: New Uer - RLS Since Young Age

Postby badnights » Tue May 02, 2017 7:07 am

My reaction to your second post was the same as Ann's - no wonder you're feeling stressed. And stress is a biggie for making this condition worse.

Polar Bear is right about the ferritin. It's the only clinical test that may show something. Not all people with RLS/WED have low ferritin but a lot of us do. (And low for us is under 100).

I find it interesting that your symptoms are restricted to one spot and have always been in that spot. Mine are more distributed and are concentrated at the joints - ankles and wrists mostly, but I feel it all the way up to just above my knees and just below my elbows. Other people feel it only in the thighs, others feel it in the feet, although that's not as common.

Some of your symptoms sound like migraine (flashing lights, ice pick headache, changes in vision, dizziness) if they occur together or in sequence. Have your doctors discussed this?
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
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Ksilver2
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Re: New Uer - RLS Since Young Age

Postby Ksilver2 » Tue May 02, 2017 5:00 pm

For me it's always strictly in the left calf; however, it can spread into the upper part of my leg from time to time. Also the best way I have found to relieve the feeling is to either directly massage my calf muscle or to flex it.
My neurologist thought it could be migraines before the MRI, I'm sure at my followup he will suggest taking migraine medication. What was odd for me was how these symptoms persisted, sometimes for multiple weeks (the dizziness for months). With migraines I though 72 hours was a maximum. Maybe with the stress of feeling ill I caused the migraine symptoms to persist.
Luckily now my only symptoms are mild dizziness, the feeling of weakness, and worse than usual rls. A lot of the vision disturbances have gone. Now my allergies are kicking in, hopefully distracting me from my other feelings.
Thanks everyone for the replies.

Rustsmith
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Re: New Uer - RLS Since Young Age

Postby Rustsmith » Wed May 03, 2017 12:17 am

Kevin, I experience migraines and also have severe RLS. An MRI cannot diagnose migraines, cluster or tension headaches, but it is used to rule out other conditions that cause headaches. My first neurologist had me go through an MRI as well as an EEG and neither one showed anything out of the ordinary.

If your doctor does propose that you start taking a migraine prevention medication, you might ask if it would be possible to try gabapentin (Neurontin) first. Some RLS patients find that gabapentin helps with their movement issues/pain. When I was diagnosed with RLS, I switched from topiramate (Topamax) to gabapentin. The gabapentin has been much more effective as a migraine preventer and it also is the only thing that I have tried that helps with my RLS induced insomnia. I also developed fairly severe anomic aphasia (difficulty recalling words, especially names) with the topiramate (my doctor nick named it Dopamax). The side effects I have experienced with gabapentin have been minimal. Unfortunately, the gabapentin does not help with my RLS movement/pain issues.
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.

Ksilver2
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Re: New Uer - RLS Since Young Age

Postby Ksilver2 » Wed May 03, 2017 2:17 am

I am afraid to take medication because of the side effects but also because I have heard of rls worsening. Because I am still relatively young it would be rather unfortunate if my rls gets permanently worse. I'm hoping I can use "home remedies" to help reduce the severity of my symptoms unless my neuro is adamant. If my neuro recommends gabapentin I'll give it a go.

Rustsmith
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Re: New Uer - RLS Since Young Age

Postby Rustsmith » Wed May 03, 2017 3:18 am

Kevin, before I started taking medications for my migraines, they were totally debilitating and I truly suffered from them for years. My comparison of severe RLS and a severe migraine is simple. Severe RLS is torture and it can sometimes make you want to die when you haven't slept for more than a few minutes in days. With severe migraines, death would be a release and so you know that it won't happen because it seems that death is the only thing that would stop the pain. Besides, during a severe migraine, thinking about much of anything is simply impossible.

Before meds, I would get headaches at least once a week that would completely incapacitate me. And I was "lucky" as far as migraineurs go because I could sleep it off and be better the next morning. Migraines for some can last for days or several weeks. However, my doctor helped me identify my triggers and provided me with two different types of medications. The gabapentin has reduced the frequency of headaches to about 1 per month. She also provided me with a medication to take as soon as I feel a headache coming on and this med completely stops my headache in its tracks. So, instead of heading for the toilet to throw up and/or a dark, quiet bedroom to sleep it off, I can return to normal in 10 to 15 minutes.

As for your RLS, if your condition is still fairly mild, by all means stick to the home remedies for as long as they are effective. Get your iron levels up with iron pills (taken with Vitamin C if you take iron sulfate), use hot or cold water baths to turn the symptoms off and anything else that you find that helps. But, don't try to tough it out for too long if these stop working and by all means, don't let it destroy your sleep. Many of us have gone for months or years with less than 5 or 6 hrs of sleep/night (I averaged 3.5 for over a year). Too little sleep over the long term will destroy your body and your mind. Avoiding taking meds is one thing, harming your long term health is a completely different matter.
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.

Ksilver2
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Re: New Uer - RLS Since Young Age

Postby Ksilver2 » Wed May 03, 2017 3:30 am

I'm glad the medication is working for you rustsmith, that sounds like hell. If my issues are migraine related I have been lucky that they are silent. I've heard that migraine medications like gabapentin take a month to even kick in at all, is that true?
It's really hard to tell if my rls is causing me to wake up. It doesn't help falling back asleep if I do wake up in the middle of the night, which I do every night. Now that I write this it seems like it is waking me, typically around 3-4 hours after initially falling asleep.
I am going to start taking daily vitamins that contain iron and see if that helps.

sleepdancer2
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Re: New Uer - RLS Since Young Age

Postby sleepdancer2 » Wed May 03, 2017 8:07 am

Even if you do start taking iron OTC, please do still request a ferritin level and come up with some sort of doctor advised plan or schedule for followup. Too much iron is not a good thing either. I know this has already been said so I'm just co-signing to please not accept news that your ferritin level is "normal" as end of story. Normal for a non RLS person may not be enough for us. Get exact numbers. Also, wouldn't hurt to ask your doc to check things like magnesium, vitamin D, and some of the B vitamins - anything that relates to muscles and nerve health. I'm just curious - have the tests you've had done included a doppler study on that leg? Your description of how this all started made me wonder if it could be circulatory.
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badnights
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Re: New Uer - RLS Since Young Age

Postby badnights » Wed May 03, 2017 10:33 am

m afraid to take medication because of the side effects but also because I have heard of rls worsening.
Only the dopamine medications have that effect. Those are levo-carbidopa/Sinemet, and the dopamine agonists: pramipexole/Mirapex, ropinirole/Requip, and rotigtine/Neupro.

The entire anti-seizure class does not have that effect (gabapentin/Neurontin, pregabalin/Lyrica, gabapentin encarbil/Horizant, topiramate, etc).

I've heard that migraine medications like gabapentin take a month to even kick in at all, is that true?
I don't know how long it takes for migraines. If you took that medication for WED/RLS, you would notice it within days.

t's really hard to tell if my rls is causing me to wake up. ..... Now that I write this it seems like it is waking me, typically around 3-4 hours after initially falling asleep.
Your problem might include periodic limb movements in sleep (PLMS). This can be a big problem for some people, and cause awakenings which seem to have no cause. A sleep study is the surest way to see how much of a problem it is for you, but you could also set up a video recorder overnight, or even buy an actigraph that records limb movements. The only medication class that reduces the movements, which are very regular, involuntary kicks, is the dopamine agonists.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

Rustsmith
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Re: New Uer - RLS Since Young Age

Postby Rustsmith » Wed May 03, 2017 2:15 pm

The time required for gabapentin to start showing benefit depends upon how your doctor decides to start you off. The typical way is to start at a low dose, say 100mg, and then ramp it up every few days until you are getting the desired benefits. My current dose is 900 mg, so it takes a while to get to that point. Gabapentin can be used at much higher doses, so from that point it could take a couple of weeks to reach the higher doses.

As for taking iron, there isn't enough iron in the typical multivitamin be useful in treating RLS. Most of us either take iron sulfate pills with vitamin C or iron glucanate pills. The iron sulfate pills are usually 325mg and contain 65mg of iron. But you should probably have your doctor check your iron levels, specifically including ferritin, before taking these pills too long because there can be a risk of too much iron. Fortunately, it takes a while (weeks or months) before you can increase your ferritin levels very much, so taking iron pills for a short time does not carry much risk.

Finally, I agree with sleepdancer with respect to being tested for Vitamin D and magnesium along with a normal iron panel plus ferritin. It is my understanding that having low Vitamin D levels can cause a number of different neurological problems, including complicating RLS. A number of our members have found that increasing magnesium was beneficial.
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.

Ksilver2
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Re: New Uer - RLS Since Young Age

Postby Ksilver2 » Wed May 03, 2017 4:53 pm

So basically:
Check Ferritin levels - If ok don't take iron, if low take specifically iron sulfate pills
Also check vitamin C and magnesium levels
Talk to neurologist about gabapentin
Perform sleep study to see if it is plms that wakes me - if it is plms take dopamine antagonists, but those cause side effects and can make things worse so try home remedies first.

Sleepdancer2 - I really haven't had any official rls tests done on me. I will bring up doppler study to my neuro
Unfortunately I will not see my neuro until my follow up in a month and I'm sure once I get there he will make another appointment for actual testing, that could take a month on its own


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