RLS and it’s woes

[Debsamuels]

Hi everyone. As a RLS sufferer for years I have tried magnesium iron supplements. Acupuncture mats Gabapenten and for the lack of sleep Clonazepam. My mainstay is ropinirole now up to 2mgs per day which makes my vision blurred and augmentation. Ropinirole is failing. I find the symptoms are timely. Unwanted additional extra symptom first thing. Why is it from 9 ami have a reprieve. Two o’clock pm it starts again. Through to bedtime then he’ll until 3am. I have large fibroids. At 54 still having horrendous periods and currently waiting for a date for my hysterectomy. Hormone overload. Pinning everything on my surgery making my RLS better. I’ve now got numb middle toes and hate the Ropinirole. I can’t help feeling our complex body systems and hormones may pay a large part with RLS as occasionally I get a few days a month reprieve. In the past the GA before surgery has been a relief too. Debbie

[Hidden]

Sorry to hear this.

Your main problem at the moment is that you are suffering augmentation due to the ropinirole.

When RLS first starts it usually only occurs in the evening or is worse during the evening. This is because it is a sleep-related disorder.

Even with untreated RLS then it is normal to have a reprieve from the symptoms during the day, especially morning.

However, with augmentation symptoms start to happen earlier and earlier in the day. Even so, you may still have a repriee in the morning.

I suggest you don't rely on your imminent surgery doing anything to help with your RLS, unless you have opiate painkillers after the surgery.

The most significant thing you can do is to eliminate the augmentation by weaning off ropinirole.

Here is some more information about treating augmentation

cks.nice.org.uk/topics/rest...

[Debsamuels in reply to Hidden]

Thank you for your reply. What’s. weaning off ropinirole is going to be difficult especially when working. What do you think of the patches kind regards Debbie

[Hidden in reply to Debsamuels]

If you were to switch from ropinirole to a rotigotine patch then you would just be substituting one dopamine agonist for another.

In which case it will do nothing for your augmentation.

You need to wean off ALL dopamine agonists.

[David1920 in reply to Hidden]

Why does RLS only occur in the evening! I can go to bed during the day for a nap and I usually have no symptoms. When I go to bed in the evening, within 10 minutes and my legs are jumping all around the place!

I suspect there is no rational explanation as is the case with poorly understood conditions!

I saw someone reporting benefit from dopamine like supplements but then seen the post which suggest these amino acids can cause augmentation which makes sense to me.

I currenty take a small dose of codeine at night and that works well -- but is difficult to get! Magnesium dosn't seem to help me no matter what strength or form.

[Hidden in reply to David1920]

RLS is a "sleep related" or "circadian rhythm" disorder.

Circadian rhythms are processes that take place in the brain and body which vary over 24 hours. This includes regular variations in the level of several hormones and neurotransmitters. The level of these rise and fall at particular times of day because the rhythms are partly regulated by dark and light.

The levels of some of them are lower at night, hence this is when we tend to sleep and the neurotransmitter dopamine is one of them. Since the symptoms of RLS are at least partly due to a dysfunction of dopamine receptor sites in nerve cells, symptoms are worse when dopamine levels are at their lowest i.e. at night.

Since dopamine levels are higher in the morning and late afternoon it's not so usual to get RLS symptoms then.

Anything that increases the levels of dopamine can intitally relieve the symptoms, but raising dopamine levels too high and over any length of time can cause further dysfunction of the receptor sites and hence make symptoms worse - i.e. augmentation.

It's usually dopamine boosting drugs that are more likely to cause augmentation. Amino acids, which are the stuff from which dopamijnhe is made don't necessarily increase dopamine levels that signficantly.

I've only ever come across one member who suffered augmentation as a result of taking a supplement and in that case it was a herbal drug known as mucuna pruriens.

Opiaties such as codeine can help with RLS, but as you say aren't so easy to obtain.

[ROBOW in reply to Hidden]

How come the “Like” box is missing from these posts? I have read many of your replies and found them most interesting and helpful. Thank you for sharing your wisdom and knowledge to help others.

Bobby

[Kaarina Administrator in reply to ROBOW]

It is there. I have just liked your message

[ROBOW in reply to Kaarina]

Great... didn’t see it on my screen. THANKS.

[CAThobbs]

Hi Debbie, I'm so sorry you are dealing with this. I did get relief, but very little, from my hysterectomy in terms of reducing the Periodic Limb Movement disorder and restless legs. At least the hemmoraging was done with. I am now more than twenty years from my surgery and I still have to take a small amount of clonazepam at night to quiet my body, along with Gabapentin. Getting your iron count up after surgery will be helpful. I took a plant based iron liquid supplement so it took me over a year to get my numbers up. The symptoms for me though never entirely went away. But I'm much better than before the surgery.

Blessings,

Catherine Hobbs

[Bridall]

Have you tried the MIrena Coil. I had it at for 9 years. It changed my life completely, no periods no menopause. No for everyone but suited me,

[shebobs in reply to Bridall]

Me too and just realised when I finally had mine removed as I went through menopause coincided with the start of my RLS. Still controlling rls with restiffic foot wraps.. Love having sleep

[dormarpor]

I take 2 of .088 Pramipexole at lunchtime and 2 at bedtime, this works vey well for me. I was having problems during the day starting about 2pm, mainly when I sat down to relax, my restless arms and shoulders would go mad I had to get up and do something to stop it.

Acupuncture, I have it and it's worked wonders with my sleeping as I was having a lot of sleepless hours. I also think it helps with RLS, my sleeping being wonderfull makes coping easier after a good night's sleep. You need to find one that you feel comfortable with as, they need to know everything about your total health before they decide how to treat you.

Regards,

Doreen

[HilsK in reply to dormarpor]

Please be wary about Pramipexole. It is a dopamine agonist. Please read Manerva's information above about dopamine agonists. They are magic until their effect starts to wear off and you need to increase the dose. Read about augmentation; I would hate you to have to go through that as I am doing.

I to have found Acupuncture useful in the short term. Chinese acupuncture has an acupuncture point related to RLS. They were the first to write about it in the 1400's before it was noted in the Western world!! So many things can help to soothe the sensations of RLS although many people get very little relief from it at all.

Wishing you well

[Jumpybean]

If you’re losing a lot of blood you’re also losing iron, so I would suggest that you keep taking “gentle iron” and vitamin C to help it be absorbed. All the best.

[sherriklh]

I am taking 1 mg of Ropinirol every night that has so helped my RLS. It helps me fall asleep and stay sleeping too. It has made such a difference in my sleeping! What is this augmentation that everyone is talking about????