Do I have RLS

[Breester]

My background is Y5 of PMR tapering Prednisolone down to 1mg daily.

After a straightforward lower discs back surgery I was left with L knee & shin numbness.

Today both legs feel numb & the pads of my feet are numb. My toes are okay rest of body okay. I can no longer sleep through the night as legs & feet get stiff & wake me. No spasms electric signals involuntary movements ever. Once awake I need to pee. I am very unsteady on my feet from bed to WC. From morning onwards walking about is my friend as legs up to knees altho feel tingly I can manage well enough. If I take a nap then legs & feet stiffen up.

An intern diagnosed RLS by consulting a screen prescribed Gabapentine 300g at night. A neurologist with little interest in me agreed with the diagnosis saying titrate up Gabapentine if needed. I stuck to 300 nightly & sleep improved. Legs however still stiff.

This week I met a rheumatologist who said definitely not RLS as 300 too low for RLS. Stop Gabapentine see GP for alternative solutions. I stopped & sleep is interrupted. Yet I think this last doctor is right.

I wonder about fibromyalgia or neuropathy.

Does anyone in the community have any thought please. 🙏

[SueJohnson]

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.

It doesn't sound like RLS to me as the urge to move is the most important and you don't have this.

300 mg is just a starting dose for RLS. Gabapentin can help you sleep.

[Breester in reply to SueJohnson]

Thank you very clear.

[Munroist]

It sounds like you have nerve damage after your back operation, based on the loss of sensation you report as well as tingling and also some difficulty walking at first. Sometimes nerve damage or neuropathy is associated with RLS but it's not clear from what you report, in particular you say you never have an urge to move and the main issue is that your legs are stiff. That doesn't sound like normal RLS as Sue says.

However the symptoms come on when you rest and are worse at night - maybe because of that rest? Gabapentin can also help with neurological pain so it may be providing some benefit if you do indeed have nerve issues.

[Breester in reply to Munroist]

Thank you for your reply. I’m going cold turkey with Gabapentine at the moment.

Instead use 1mg of Pred each morning in case the PMR is still around causing stiffness & paracetamol as & when.

[SueJohnson in reply to Breester]

Maybe you have already told me but why are you going cold turkey? You will suffer withdrawal effects when it is not necessary.

[Breester in reply to SueJohnson]

The last doctor I saw rheumatologist advised to stop immediately I questioned him if this was ok he said yes. I know this isn’t advisable so take paracetamol when felt uncomfortable. A week later I feel okay. Original symptoms persist. I am weighing up whether to use Gabapentine as a sleep aid as you suggested. The frustration I have is dealing with conflicting medical advice & getting someone to take an interest and self diagnosing. I’m monitoring myself now minimum drugs, sleep pattern, mobility & will eventually go back to my GP to try again for help.

[Cappuccino_2]

hi, your symptoms dont sound a million miles away from mine (see my earlier post "does this sound like RLS?"

I suffer from what started as pain in my left knee, moved to pain in the left shin and now the pain has spread to the left hip. The pain only occurs at night and makes we wake up several times. I was also getting up repeatedly at night (up to 8-10 times on some nights) with an urge to go to the bathroom. I would have an urge to move, but the feeling was more in my abdomen area rather than my arms or legs. This would happen every night without fail for the past several years.

I'm not entirely convinced I have RLS either but am pretty sure the condition is neurological in nature. I tried Pramipexole to see if I would get relief from the symptoms (which would also confirm RLS) but felt very nauseous the next day and had a severe headache for much of the day, so stopped taking it after 1 day. I've moved onto Pregabalin and am taking 75mg tablets 2 hours before sleep. This has certainly helped with the sleep (both with getting to sleep and getting up less often) and has delayed the onset of the pains in my leg at night to the last few hours of sleep. I'll probably request an increase in the dose of pregabalin to 100mg after a couple of weeks to see if that can get rid of the nightly leg pains entirely.

I've also started taking cold showers before sleep, which I think has been helping.

Hope this is helpful!

[Breester]

Thank you for your reply for time being I will stick with conservative meds. The responses confirmed my belief I had been misdiagnosed.