What can RLS sufferers do when they are no longer capable of walking at night?

[thorp]

I take 100mg pregabalin and 626 microgram clonazepam every night.

And about three times every night I wake up with rampaging legs. I sit on the side of the bed for about 15 minutes, kicking away. Then I walk around the bedroom for another15 minutes. Then i am able to go to sleep again for two to three hours until it all starts again.The walking seems to soothe my legs

In all i walk around 2 kilometres every night

That is fine for me now. But i am 79. I have a bad ankle and my hip is showing signs of difficulty.I can see that soon I wont be able to walk at night

Please can someone tell me what can RLS sufferers do when they are no longer capable of walking at night?

thank you

[Madlegs1]

Have you had your serum ferritin checked-? It needs to be well above 100.

Also are you taking any triggering agents? Medications or foods/ drinks?

[Elffindoe]

It seems your RLS simply isn't under control.

If it were, then you wouldn't need to walk.

A good idea then to review your treatment options.

As Madlegs suggests, your first option is to get your iron levels checked out.

This involves blood tests for serum iron, transferrin saturation, ferritin and haemoglobin.

If these are low then you have iron deficiency. If haemoglobin is low, you have iron deficiency anaemia. In which case you need iron therapy.

If you're told that your levels are all normal then you need to get the actual result, number for ferritin.

Then

If ferritin is below 75, start taking an oral iron supplement. The aim of this is to increase your ferritin to at least 100. In 50% of cases, this helps with RLS symptoms.

This will only work if the other tests are low. You would need to correct this first.

I wouldn't advise taking a prescription iron. These are too harsh and cause bowel problems. In addition they're quite a large dose and this isn't necessarily a good thing.

A popular supplement is over the counter ferrous bisglycinate or "gentle iron".

Take this in the evening at least 2 hours after eating.

Take vitamin C or orange juice at the same time.

Do NOT take any antacid at the same time.

Only take the iron once every TWO days.

This may take months to work.

Also as Madlegs says, you need to identify if anything is actually taking your RLS worse. If you're taking any other medications for anything else then that could be the problem.

Alcohol, xugar, nicotine and caffeine trigger RLS. Theremay be otber foods you're eating that are making your RLS worse.

I appreciate it may be difficult because of side effects, but you're not taking enough pregabalin. The typical minimum effective dose is 150mgand you can take up to 450mg.

Whereas pregabalin is known to relieve RLS symptoms, clonazepam isn't that much of a help. It's more of a sleep aid. With long term use it tends to lose effect, so do not increase it.

The other thing you could discuss with your doctor is adding a low potency opioid, either codeine or tramadol.

A prescription codeine is better, the dose you get in over the counter paracetamol and codeine isn't really enough.

With these measures, if you can get your RLS symptoms under control, then you shouldn't have to walk at night.

[thorp in reply to Elffindoe]

thank you so much for your kind suggestions

my serum ferritin was 83 in june, 115 in august and 130 in october. So i think i may be OK

I think my problem is gastric reflux .

I have bad gastric reflux and I take omeprazole 10mg and famotidine 20 mg every day.

I told my doctor these were bad for RLS and she said, she was sorry but there were no alternatives.

I am sleepy and dopey in the mornings and I am afraid If I increase the pregabalin then this dopeyness will increase and last through the day not just the mornings

Do you think this would be the case?

[Elffindoe in reply to thorp]

The drowsiness with the pregabalin might last further through the day if you increase the dose.

I'm afraid with these treatments it's always a personal balancing act between the benefit of a drug and the side effects.

If you don't take enough then you don't get the full benefit, but the more you take the greater the side effects.

You have to end up at a point where you get as much of a satisfactory benefit with a satisfactory level of side effects.

One way round this, as I suggested is to add in another medication such as codeine.

A further recommendation which personally I would never do, is to add a small dose of a dopamine agonist. The absolute minimum and never increase the dose.

Sorry about the gastric reflux. Yes BOTH proton pump inhibitors like omeprazole and H2 inhibitors like famotidine worsen RLS. WHY take both?

They are very effective for reflux, but I don't believe it's true that there are no aternatives. There are other ways of managing reflux, but I'm no expert on that. Yiu could ask a pharmacist ablout other medciations, but ther are also other things you can do e.g. concerning diet, posture etc.

[ELLSBELLS]

I just sit on edge of bed and move legs up and down.

[Butterflysun1]

That worries me too. Sometimes on the worst nights I feel like I’ve done a marathon & my muscles feel it too. I try to console myself it must be helping my fitness ( not very fit though ).I just hope it doesn’t happen. Standing is better than nothing with feet wriggling!

[Munroist]

I find that just a little movement, stretching and distraction is enough to reset things. Being on your feet for a bit is useful, but you can potter and move about without going too far and normally 20 minutes is enough. Iron bisglycinate does seem to reduce the intensity of the urges to move and means I “reset” quicker, although I’m always up at least twice a night needing to move. On a different note, movement is essential for almost every other part of your body, blood circulation, lymphatic system, digestion and probably many more so it’s not just for RLS. That might help you feel better about doing it although I share your concern about the possibility of limited ability to move e.g. if you broke a leg. For me I’m now a little bit more careful about doing anything which might result in an injury which could make moving or walking harder, trying to stay mindful, watching where your feet go, using aids like handrails where available etc.

[bill54321]

Do like I do at 91 yrs ol. Reach done and feel your foot. Ya ! no one told you to stroke, kneed, press, pull visualize become one with your feet and say no. Where have you been?

[bedith6]

I am nearly 91 and I have been wondering about that very question although at the moment I can and do still pace the night away.

[TajarTales]

At Mayo Clinic they recommended a stationary recumbent bike. When nothing else is working, I find it has been helpful. I was able to use it even right after hip replacement surgery.