Not Sure if it is RLS

[Mel]

Hello all. New member here. So grateful for this forum.
Looking to compare symptoms with others who are suffering. Calf tightening, crampy feeling and slight electrical jolts when sitting or lying down for any period of time. Enough to wake me out of sleep. Here's where I get confused. I feel as though I move my legs to prevent the cramping and uncomfortable sensations. If I don't I think the tightness will go into a full charley horse.
Any of this sound familiar? My doctor doesn't seem to know what the problem is. I have borderline high blood pressure and take Amlodipine. Have read about side affects. Doctor doesn't necessarily agree.
Any feedback would be welcome.

[QyX]

You should see a specialist and do a sleep study, if possible.

With RLS, the symptoms are more severe in the late evening and night.

Do you have symptoms 24/7 or only during a specific time of the day?

[Rustsmith]

Here is a link to the accepted diagnostic criteria. If you cannot answer yes to the first four questions, it isn't RLS. The fifth question is one that a doctor would have answer.

Often the real key is question 2, the sensations have to go away or at least me greatly reduced by moving. This does not mean stretching, it means getting up to walk around. And the relief occurs almost instantly.

http://irlssg.org/diagnostic-criteria

[Mel]

Thank you. I can answer yes to all questions and especially #2. While I do have symptoms sitting at a desk for an extended period they are worse when lying down sleeping, so much so that I have now resorted to sleeping in a recliner with feet elevated. Even then the sensation of cramping, bubbling and electrical popping persists. If I do fall asleep I'm usually awaken with a slight electric pop in my calf muscle. If I don't move my legs it will often advance to a full blown charley horse. I had a micro discectomy about 3 years ago so I assumed the leg activity was from that. Not so sure anymore. Will be pursuing a solution with my doctor and possible sleep study. Again, thanks for the information.

[QyX]

Yep, it sounds like you reached a point where treatment is necessary.

I know that "electrical popping" very well.

At least RLS can be treated and with the help of this forum, you might be able to avoid some of the common problems related to RLS treatment.

[Mel]

Thank you, QyX. In a strange way I am happy someone can relate to the "electrical popping" sensation, sad as that may be.

[ViewsAskew]

One thing to think about is that there may be multiple things going on.

For me, the hallmark of RLS is the URGE to move. The sensation varies tremendously and can be confused with other things, such as nocturnal leg cramps and the burning of neuropathy. The urge though? It, to me, is like an internal anxiety. It often precedes the sensation by a bit. I wind my legs, feet, and toes, (or arms), I twist, I walk, I do yoga. I MUST MOVE.

It is different than the moving you do from pain - where you readjust through the pain to get it to ebb. That hurts but has no anxiety attached to it.

Another hallmark is the at rest part. There is NO time that is as bad as when you settle down for a long, restful, snuggly [insert the noun]. This could be a movie, a snuggle with the cat or a person, a winter's chill you are avoiding, or a book you are anticipating. All result in the same darn thing. Just as you feel relaxed and the endorphins of the relaxation settle in (or maybe the serotonin), BOOM! Like a hand hurtling the middle finger toward your face, it appears.

[Mel]

Thanks to all who have advised. I am interested in finding out what "sensations" can be attributed to rls. Are they painful? Cramping? Electric shock-like? I've heard various descriptions. In my case, the discomfort is not all over the legs. I can almost pinpoint exactly where the pain, cramping or electric shock is located.
Would really appreciate hearing from you all regarding this as it will help in the diagnostic process.

[Mel]

Oops! I should have mentioned the pain or cramping is often momentary, yet persistent, and not necessarily confined to one area. Rather, it is totally random mostly withing the calf. Thanks again.

[QyX]

Oops! I should have mentioned the pain or cramping is often momentary, yet persistent, and not necessarily confined to one area. Rather, it is totally random mostly withing the calf. Thanks again.

Those are partly my main RLS symptoms, too. I have a few more, especially in the foot where I tend to have painful burning sensations.

And well: when things go really bad and I forget to take my opioids, I can develop full body RLS, so symptoms in my arm and my back.

The one thing that really sucks when it comes to RLS is that in all moderate to severe cases, medication is required to treat the symptoms. And this can be a real battle because certain medication, while helpful in the beginning, can ultimately worsen the condition and then you have to stop the drug and change to something else for your symptoms to recover.

Ultimately, many of us require opioids. My symptoms started off so bad, that I was on high potent opioids only one month after diagnosis since my response to Dopamine-Agonists were truly horrific.

I would start reading up on all the important RLS medication. There is so much good information here in the forum and I will just write you a list with the substances most commonly used in RLS therapy world wide. Note: I will use the active agent as name and not the brand name. Oh, and I am not mentioning iron treatment. You should look that up seperately.


(1) Dopaminergic agents (Dopamine + Dopamine-Agonists)

Levodopa / L-Dopa, Pramipexole, Ropinirole & Rotigotine

(These are the drugs most commonly used to initiate RLS treatment, they often work well initially but after a few days, weeks, months or years - depending on the patient - symptoms can get worse and then those drugs need to be stopped. Sometimes restarting them is possible)

(2) Anticonvulsants & alpha 2 delta Ligands

Carbamazepine, Oxcarbazepine, Gabapentin, Pregabalin

(Those drugs are helpful with the weird sensations, especially when they are painful and insomnia. They can treat the "urge to move", too but not as good as dopamine agonists and opioids)

(3) Opioids

Both, low and high potent opioids are used to treat RLS. The weaker opioids most commonly used to treat RLS are:

Codeine, Dihydrocodeine, Tramadol

(With a confirmed RLS diagnosis, it is relatively easy to obtain a prescription for low potent opioids. However after a few months, they are often not strong enough but doctors are reluctant and prescribe the more potent ones)

high potent opioids for oral application in RLS are:

Morphine, Hydrocodone, Oxycodone, Hydromorphone, Methadone

(Opioids are probably the best drugs for RLS since they tend to have less side effects than other RLS medication. However Methadone might be an exception to this. I take a combination of 3 different high potent opioids (together with other medication) and even after 7 years, opioids are still highly effective for me. Nothing beats opioids when it comes to the urge to move. For pain, they are only partially effective but are still - at least for me - the most important single drug to manage painful sensations. My opinion is, that many RLS patients would do much better if they had easier access to opioids. The most problematic side opioid side effect is for many insomnia, which can be an incredible nasty and complicated problem to treat.

(4) "Sleeping pills" (Benzodiazepines & Z-Drugs)

Diazepam, Clonazepam, Zopiclon

(Clonazepam is probably the most commonly used Benzodiazepine for RLS. It is the only Benzodiazepine where we have some evidence that it is not only helpful with insomnia but also helpful with core RLS symptoms. However there are often quite serious tolerance issues involved. Some doctors use those drugs to treat chronic insomnia in RLS or insomnia caused by opioids. If possible, I would avoid those drugs like hell but sometimes they can become necessary)

(5) Natural Medicine

Kratom, medical Marijuana

(Kratom works similar than opioids and is used by RLS patients who have problems obtaining enough opioids from their doctor. Marijuana is most commonly used to treat RLS related insomnia and boost the analgesic properties of opioids. Cannabis also helps with reducing and avoiding opioid tolerance issues).

I am not sure if this information is helpful in this moment right now but I hope it is. It is so very important be informed because unfortunately many doctors barely know anything about RLS. Even so called specialists often don't have a clue.

[Mel]

Dear QyX. Thank you so much for taking the time to write that excellent summary. As I dig deeper into my condition it is good to have as much information as possible, especially, as you noted, many doctors are clueless when it comes to RLS. In fact, my doctor (actually a PA) prescribed a mild dose of Ropinirole (.025 mg) and never told me about augmentation. She's still not convinced I have RLS and even had me go for a EMG and nerve induction test. Both were negative.
I live in a state where medical marijuana is not legal (N Carolina). As you mentioned, it can help with sleep. My only concern is the painful twitching which will often advance into a full blown charley horse if I don't move my legs. If I'm in a very deep sleep this will often happen.
At any rate, I really appreciate the information and wish you the very best.