New here, seeking wisdom

[honda14]

Hi. I'm a 65 y.o. American woman. I've had Restless Leg Syndrome since my early teens but was only officially diagnosed with it around 2000 when I had a sleep study done. I've been on Gabapentin for years. I feel like it's not working as well in last few months as it used to. The RLS doesn't usually bother me during the day, only when I stop at the end of the day to relax, watch tv or read before bed. It has been keeping me awake. I'm trying to be very intentional about my getting ready for bed routine and that is helping but, wow, I don't do well if I don't get enough sleep. When I'm having trouble with the RLS, it seems to be accompanied by dreams that continue over and over. Very unrestful. It stinks.

[involuntarydancer]

Have you had your bloods tested? It is important to work out what your serum ferritin is. Your GP can do this test; you need to get the actual figure - not just that you are 'normal'. If you are below 100 you should start a supplement. Raising serum ferritin to over 300 (an iron infusion is usually required) results in a complete alleviation of symptoms for about 50% of sufferers and helps reduce symptoms for more. It seems that you have avoided being prescribed a dopamine agonist which is most likely good news for you.

There are many knowledgeable sympathetic people on this forum and it is a fantastic resource for all sufferers.

[Hidden]

Hi and sorry to hear your problem.

It may be that as involuntarydancer says that you are suffering iron deficiency and this is associated with a low ferritin level.

A ferritin level below 75 suggests that you can raise it by taking an oral iron supplement. However that becomes difficult with higher ferritin levels becasue the body limits its absorption.

You can raise it to 100 using an oral supplement, but ideally it needs to be at least 200 and better still 350. This can only really be done with an IV iron infusion which can benefit 60% of those having one.

The other thing is that if you've recently noted it getting worse then there may be something triggering it - making it worse. This could be for example starting a new medication or changing a medication in the months before the worsening.

If you've been on the same dose of gabapentin for years, the worsening may also be simply due to getting older.

The dreams may be significant, in two ways. One is that when we miss out on dreams one night, we tend to have more the next night to compensate.

The other thing is that we tend to have and be more aware of dreams, especially repetitive ones when we're suffering from some anxiety and anxiety can affect RLS.

[honda14 in reply to Hidden]

Thank you for this. I don't think I have a problem with anxiety, but I am dysthymic and I do know that depression also effects sleep. I am not currently taking any antidepressants because the last two or three tries (on different) antidepressants were not helpful. They didn't do anything for me, so what's the point? My sister told me the name of something new she is on and I'm going to talk to my Dr. about that, too.

[Hidden in reply to honda14]

Ok, but be aware that most antidepressants make RLS worse. There are only a very limited number that don't.

[Hidden]

Try taking your Gabapentin at a different time. I take 4 tablets a day. 2 at 5:00 Pm and 2 at bed time.

[Papa9385]

You have my sympathy! I’m new at this RLS game. I’ve been on Gabapentin for a couple of months, and sometimes wonder if it is worth taking. I find walking at least once a day helps. Sadly, in the evenings, I have to make sure that I move around and pace up and down. I’ve also become very aware of timing of medication, position in the bed, etc. I can sleep through until 02.00-ish and then it becomes a bit of a struggle. Still talking to the doctor about medication. Be kind to yourself and good luck!