Jerking legs

[Legs391]

I have been taking Gabapentin for many years for what was diagnosed as RLS. But I get painful jerks not only in my legs but also other parts of my body. I usually increase the dose if it gets really bad and also take painkillers. Not seen the doctor for ages due to covid. Sometimes the area where the jerks are is so sensitive it hurts just to touch it. Has anyone else had this problem.

[Hidden]

From what you write it's not easy to say for sure what's going on.

Some people with RLS do get jerks in the legs, arms or shoulders for example. I get these.

If the jerks are particularly strong then it's possible that this is causing the tenderness.

I wonder what dose of gabapentin you're taking as this may be an issue.

What painkillers are you taking?

I'd say you do need to consult a doctor to exclude anything else.

As far as I'm aware, it's still possible to talk to a GP in the UK, it may be a telephone conversation. However, if somebody needs to be seen, you can still be seen.

More people are getting ill from non-covid issues because they are not seeing a doctor.

[Legs391 in reply to Hidden]

Thanks for you reply. I’ve got over the counter painkillers like co codamol or Nurofen I usually just take 100g of Gabapentine three times a day plus 300 at night. .

[Hidden in reply to Legs391]

In which case here's some things to consider.

Assuming the jerks are due to RLS -

RLS does generally get worse with time.

A major causative factor in RLS is iron deficiency. Iron defiociency anaemia can cause RLS but even if you don't have anaemia, you can still have iron deficiency casuing RLS.

It's recommended for GPs to do blood tests for iron deficiency in patients with RLS. One particular test is for serum Ferritin.

The rule as regards this is if your ferritin level is less than 75ug/L then it's worth starting taking an oral iron supplement. THis can raise ferritin to 100ug/L at which point 50% of RLS sufferers gain some benefit. It does take some months however.

It's also recommended to lok at you're taking any other medications becasue there are many that make RLS worse. In which case if they can be avoided or switched to an alternative it will help with RLS.

It's not 100% clear what the role of gabapentin in your RLS is. This could get complicated!

Firstly I note you take 100mg 3 X a day, plus 300mg at night. I'm not sure then if that's 4 X a day.

Normally gabapentin is only taken once or twice a day for RLS. That's because one of its features is that it only happens or is worse at night.

If you take it earlier in the day, is that because you get RLS symptoms during the day? If that's the case then has it always been like that or did you only used to get them at night and they started getting earlier.

Similarly, one of the features of RLS is that it starts in the legs, or is worse in the legs. If you get it elsewhere, again has that always been the case or has it spread from the legs.

One possibility is that you're simply not taking enough gabapentin or that it's so spread out it won't be effective.

It appears you're taking a dose of 700mg a day. Most people have to take at least 900mg a day and some even more, the maximum recommended dose is 2700mg.

If it were 900mg, a reasonable schedule would be to take 600mg later in the evening and 300mg 2 - 3 hours before that.

Another possibility is, depending on your experience of daytime symptoms and spreading to other parts, the gabapentin itself may be causing a problem.

As regards painkillers, it seems that if you have pain taking a painkiller is logical. However if the pain is due to the jerking then it may be better to get the RLS under better control.

Taking paracetamol or ibuprofen will not help with the jerking.

The codeine in the OTC codamol may help a bit. That's because it's an opioid which are known to help with RLS. However the amount of codeine in cocodamol is insufficient and in addition it's only a weak opioid.

Som people do find a combination of gabapentin and an opioid helpful, but it would have to be more codeine than there is in cocodamol or it would have to be a low dose of a more potent opioid. You would need a prescription.

The other possibilities are that the jerking is not due to RLS and/or you never had RLS in the first place.

Since you wrote " for what was diagnosed as RLS" it seems you might have some doubt.

If you read the following link you can compare the symptoms you have, or started with, to the official RLS diagnostic criteria.. If your symptoms match all the criteria then it's highly likely the diagnosis is correct.

irlssg.org/diagnostic-criteria

The principle defining symptom of RLS is the "urge to move", I see you wrote about your jerking 5 years ago with no mention of the urge to move, which does cast some doubt on the diagnosis.

[Legs391 in reply to Hidden]

Thank you for you’re reply which leads me to believe you have done a lot of research or are in the medical profession. Makes me wonder if I should question my doctor. I can remember the first time I was prescribed gaberpentine I refused to take it because it mentioned Epilepsy on the label. Only getting the odd attach. It was a few years later after a particularly painful attach I got a second opinion and was again given Gabapentin.

The article you referred me to mentioned the urge to move. I have no control over my jerks. I must admit I find taking the drug at night helps me relax as I’m not a good sleeper. I don’t get attacks every day and can sometimes go for weeks.

[Hidden in reply to Legs391]

You're correct, gabapentin is licensed for nerve pain and epilepsy but is prescribed off label for RLS.

Your jerking will not be epilepsy.

I also get the jerking, sometimes it just starts, sometimes I get the urge to move before it starts.

However when I first started with RLS, I'd get the urge to move with no jerking.

The other criteria are also significant.

Does the jerking only occur or is worse when sitting or lying down?

Is it relieved by moving?

Does it only occur or is worse at night?

Your symptoms have to match all of these.

In addition if you now get the jerking during the day, was it originally only in the evening and slowly got earlier.

Were your symptoms only in your legs then spread elsewhere or were they always elsewhere?

These are significant questions.

[Legs391 in reply to Hidden]

I will monitor over the next few weeks but one answer it is not always at night I think originally it improved with movement but not always. Sometimes the pain gets so bad I just want to take everything in the cupboard

[Guitarpickin]

Legs391, can you explain your pain a bit more? Is it only pain in the muscle(s) you think cause the jerking motion? Or where the muscles attach? Or something else? And do you mean the jerk motion itself hurts? Or that after prolonged involuntary movement you note a lasting pain? I may have something similar on occasion, but can’t tell for sure based on your description.

[Legs391 in reply to Guitarpickin]

It is hard to describe. Perhaps why the doctor doesn’t understand. When I have a bad attack the jerks come at regular intervals and the pain makes me shout out. My husband sometimes resorts to sleeping alone. How do you describe you’re pain and the interval between.

[Guitarpickin in reply to Legs391]

Gosh, I’m sorry to hear about what you’re enduring. It sounds like your pain is directly associated with the jerking. Mine is not typically like that. There are a few different presentations, but the most frequent one is more of a deep, pulsing pain that is migratory. Though it can cause me the jerk and it can also stay in one place for hours, which is when I get bruising. I’ve always just assumed it was caused by spasming of deep muscles or tissues (the kind our brains don’t have voluntary control over). Yours sounds much worse and I am so sorry. If it is any consolation, my neurologist clearly has no idea what I’m talking about either. He just says it’s “fascinating,” which is a polite sounding way of dismissing it.