RLS OR NOT?

[C82021]

Four years ago I fell, hit the back of my head and had internal damage. Arms were numb, loss of memory, and uncontrollable leg movement, mostly early evening. Every thing seems back to normal except for the legs and short memory loss. So for four years I thought I had RLS and so did the doctors. I am currently taking 1200mg Gabapentin and 400mg Magnesium. Some days I'm fine (seldom) others not. I would would saw problematic days 5 out of 7. I follow everything I learned here religiously, diet, walking etc..... Other day saw the doctor and told her about this site. I commented that most other people with RLS had leg pain and that I didn't. She said then you don't have RLS, people with RLS have pain. She is sending me to another Neurologist to look for something else. What say you?

[SueJohnson]

Not all people with RLS have leg pain. The diagnosis of RLS is by this: All of the following must be true for a diagnosis of RLS: 1) The urge to move the legs and sometimes the arms 2) The onset or worsening of symptoms during periods of inactivity when lying down and sometimes when sitting 3) Symptoms occur or worsen in the evening or bedtime. They are usually dormant in the morning 4) Symptoms get better when walking or stretching as long as it is continued. 5) Can't be explained by another medical or behavioral condition.

[C82021 in reply to SueJohnson]

All of the above except ( Can't be explained by another condition )

[SueJohnson]

If the gabapentin is not controlling your RLS completely, you are probably not taking enough. The Mayo Clinic Algorithm on RLS says that "Most RLS patients require 1200 to 1800 mg of gabapentin." Also be sure to take your magnesium at least 3 hours before you take the gabapentin.

[C82021 in reply to SueJohnson]

Yes, doctor considering increase to 1800, and Magnesium is 3 plus hours from Gabapentin.

[ChrisColumbus]

This is just my view: other views may be available! Are your movements voluntary or involuntary? While awake or asleep?

RLS for decades here - no pain, just go through periods of having to voluntarily move my legs during the evening or in bed to ease discomfort, typical of RLS.

*Involuntary* periodic limb movements during wakefulness (PLMA, a type of periodic limb movement disorder or PLMD) has sometimes been linked to RLS. I view it as something different, but others may disagree.

Periodic limb movements in sleep (PLMS, formerly known as nocturnal myoclonus, another form of PLMD) are uncontrollable brief jerks (0.5 to 5.0 seconds in duration) of the limbs seen during sleep.

I don't suffer from any form of PLMD, but others on here do and will therefore be better placed to advise whether you may be suffering from this and how it is treated.

[C82021 in reply to ChrisColumbus]

Both voluntarily and involuntary, both awake and asleep, and no pain what so ever.

[ChrisColumbus in reply to C82021]

This may not be relevant in your case, but you'll be aware that head injury can lead to movement disorders.

The severity and persistence of the disorder can be variable depending on the extent and location of the injury.

Just for interest, a short abstract from a 2004 article on the subject is linked below (the whole article costs $47, and is clearly written by and for neurologists)

pubmed.ncbi.nlm.nih.gov/152...

[SueJohnson in reply to ChrisColumbus]

The same medicines are used to treat it as RLS.

[Munroist]

I’ve had RLS for years, never had any associated pain, just the restlessness and urge to move. Originally I thought it was unusual to have pain but many people report it. I often wonder whether the pain and the RLS are both symptoms of a different issue e.g. nerve damage which might lead you to conclude the pain is not part of RLS but a co-factor (there’s a better term I can’t remember). However if the pain follows the RLS symptoms e.g. circadian then you’d say it was part of the syndrome.

[Embroiderer]

I don’t get pain as such; I get strange sensations which aren’t pleasant, certainly, but not painful, alongside the five criteria as others have listed.

[DicCarlson]

I had severe RLS probably induced by a head injury (un-diagnosed concussion from a ski accident). The RLS occurred almost a year post accident and presented with low Ferritin. Iron supplements took away the severe RLS almost immediately.