Worse RLS after Surgery - what meds help?

[anijo]

Hello, Friends,

My husband just had a major knee surgery last week after an accident.

His knee is in one of those mobilizing braces so the wound can heal.

My husband has always had restless legs, and we have not really worried about it, except for getting a firmer mattress so I could sleep....

But his RSL got really bad after the surgery.

And so, when he slept, his operated leg would jerk, and my husband was in total pain several times during the night.

He got a muscle relaxant, but it didn't work.

He also increased his magnesium.

Is there a specific med for RLS?

Thanks so much, he will be confined to that brace for a while longer.

Anijo

[Polar Bear]

Welcome to the discussion board.

Has your husband been officially diagnosed with RLS and seen his GP.
i.e. does he definitely have RLS and not Periodic Limb Movement while sleeping.
Prior to surgery, Would he have had symptoms whilst at rest, just watching tv etc. as well as when in bed.
Did he had difficulty falling asleep because of the creepy/crawly RLS and would movement help relieve these sensations.
The urge to move is a major RLS Criteria..... and this is the 'urge to move' not an involuntary jerk.

Quite often RLS symptoms can be triggered, or get worse, following surgery. Although sometimes the pain relief provided following the surgery can go some way to relieving the RLS symptoms.

I don't believe that a muscle relaxant is of great benefit for RLS symptoms - and it may aggravate the symptoms.

Has your husband seen his doctor about this and requested treatment, or has he self diagnosed.
One thing ..... get his ferritin serum level checked, this is pretty important for RLS. It is a blood test that is not normally done with routine blood works and he needs to ask for it. This tells the level of iron stored in the brain – and that is what is important to us sufferers of WED/RLS. We need a level of around 100, especially if we are taking a DA drug such as pramipezole or ropinerole. When getting the results of this test please ask the doctor for the actual level = do not accept ‘normal’ as an answer. Doctors and Labs may consider 20 to be normal… but it isn’t normal for us.

Yes - There are several specific medications for RLS. All of them need a prescription.

Please go to the ""Managing your RLS"" which is at the top of this section. There's a great deal of information here including regarding medication and treatment. If you read through this you/your husband will be better informed to discuss treatment with his GP. Most medications start to work from the first dose although occasionally some medications will need titrated upwards to reach a working dose.

I'd suggest your husband needs to..... arm himself with information.... and then go see the GP.

It will be particularly horrible for your husband if he is in a brace and unable to move and is indeed suffering RLS symptoms with the distressing urge/need to move.

[debbluebird]

After my joint surgeries, the pain meds helped my RLS/PLM. Then after it healed mine was better.

[badnights]

Hi anijo
I also had a serious worsening of my WED/RLS after knee surgery. After a year, I was given a dopamine agonist, which type of medication is still regarded by most doctors as front-line treatment for WED. I augmented, which is a fairly common reaction though it usually takes months to years to happen. Mine happened within a week. Augmentation is a worsening of the RLS/WED symptoms caused by the medication that's supposed to treat them. It works at first, but then symptoms return earlier in the day, spread to the arms, increase in intensity. So - he wants to avoid augmentation at all costs. Remember, the disease is circadian: it gets worse at night. Symptoms are triggered by relaxation, both physical and mental stillness, and this effect is worse at night. Symptoms consist of an urge to move, and nasty disgusting horrible sensations. If there is no urge to move, and the legs are moving involuntarily, then it's more likely to be something called periodic limb movements in sleep (or periodic limb movement disorder, if it's severe enough and if there is no other sleep disorder, like WED/RLS, invovled ).

The first thing for him to do is arm himself with information, as polar bear said, then see his doctor. His doctor is likely to know less than him about RLS/WED at that point, be forewarned. Request a serum ferritin test - the amount of ferritin in the blood. Ferritin is a protein that stores iron in body tissues. It tends to be low in WED/RLS patients (many, not all) and if he takes a dopamine agonist when his ferritin is low, he is more likely to augment. In fact, simply taking oral iron can reduce symptoms to a bearable level, so that would be the first thing to try after verifying with his doctor that it won't harm him (iron overload can be deadly; and also check for interactions with other meds he may be taking).

There are three classes of medication used to treat WED/RLS, and they all have their issues - none is completely effective. On top of that, side effects are common, as with all medications, and vary from person to person, so he may have to try a number of medications to find one that's effective and that has tolerable side effects. If he chooses to try medication, that is.

One class is the dopamine agonists, the three main ones are pramipexole/Mirapex (trade name after the slash), ropinirole/Requip, and rotigotine/Neupro (the first two are pills, the last is a patch, all three are FDA-approved for treating WED/RLS). These medications can be very effective. They can also cause augmentation, though, which is a cruel price to pay for some initial effectiveness. Sadly, most doctors - not only GPs but neurologists and other specialists - don't know what augmentation is. Augmentation is less likely to happen if ferritin in the blood is above 100. "Normal" values are said to be 20, so if he's told the lab results are normal, he needs to ask for the number. 20 is not normal for WED patients; it is not enough, and it would be dangerous for him to take dopamine agonists with less than 75 ng/microlitre ferritin.

Another class of medication used for RLS/WED is the anti-convulsants, mainly gabapentin/Neurontin, pregabalin/Lyrica, and gabapentin encarbil/Horizant. The latter is FDA-approved for treating WED/RLS. These are not generally as effective and often are used in combination with something else, but they can be effective on their own for milder symptoms.

The last class is opioids, from low potency ones like codeine to high-potency ones like hydromorphone and methadone. These are the most effective, aside from the dopamine agonists which can be very effective if they haven't caused augmentation. If he is getting pain medication for his knee surgery, maybe he can save it up for evenings, so it takes effect at night when he's trying to sleep.

Here are some links to information he should print and bring with him. He can present this to his doctor, saying he would like his opinion on it. Most doctors are receptive to this approach. They know a lot, but unfortunately it's impossible for them to know everything. Your husband may be the first RLS/WED patient his doc has, but he won't be the last. Maybe your husband can also invite his doctor to keep the materials; the doc can't learn much by glancing at them in a short appointment.
http://www.rls.org/file/publication-loa ... 9-4-15.pdf
http://www.rls.org/file/publication-loa ... 9-4-15.pdf
Also, if you become a member you can download a fantastic summary of the disease for healthcare providers, called the RLS Medical Bulletin. If you are not a member, go to http://www.willis-ekbom.org/about-rls-wed/publications and click Become a Member on the left panel. The membership fee goes to support research as well as creation of those documents.