My legs are torture!

[Rish]

Hi everyone I’m sure some of you remember me, last time I posted I was trying to get off the ropinirole. It was going well but then it all went wrong ! I notice the more my back hurts the more my legs kick off! I’m taking 4 tablets that are 2 mg of Ropinirole I’m taking gabapentin and codine I’m also taking 6 sleeping tablets to try knock me out but it doesn’t work! Doctors are not interested. It’s getting me so down not being able to sit or travel in a car! I hate these legs ! 😢

[Hidden]

Hi Rish I see you posted last about 8 months ago.

It appears that 8 months ago you were suffering augmentation. It seems you are still suffering augmentation.

This is probably because you are still taking too much ropinirole.

To be blunt, until you reduce and stop the ropinirole, your situation will not improve and may worsen.

Since you don’t say what dose of gabapentin or codeine you’re taking and you don’t say what sleeping tablets you’re taking or what dose I can't say if they should be helping or not.

I’m guessing that you’re not taking enough codiene, which isn’t the best opiate for RLS anyway and not taking enough gabapentin.

You may be taking too many sleeping tablets.

When you reduce ropinirole you will get withdrawal effects, these usually take the form of more intense RLS symptoms and sleeplessness. These withdrawal effects aren’t permanent, they’re a barrier you have you get through. If you give up withdrawing because of this, then you will get nowhere.

To reiterate what you’ve previously been told, you need to reduce the ropinirole very slowly as this will reduce the withdrawal effects.

At your current dose, it will possibly take you about a year to withdraw, so a great deal of patience is needed. This is because the lower the dose gets, the longer it takes to reduce it further.

You can start by trying to reduce it in steps of 0.5mg every 4 weeks, but later you may have to bring this down to steps of 0.25mg.

I realise this may seem very daunting, so I’ll give no more detail for now.

I don’t see how your back pain is related either to your RLS or you diabetes. If you have a known spinal neuropathy, then that requires its own specific treatment.

Opiates, e.g. codeine aren’t particularly good for nerve pain. Gabapentin is, but you need a big enough dose. Depending on the cause of the back pain a course of an anti-inflammatory might help. There are other treatments depending on what the cause is. If you don’t know what the cause is, it’s worth having it investigated.

You must keep your blood sugar down, diabetes can lead to peripheral neuropathy and this will make your RLS worse.

The good news is, despite however long it takes you to reduce the ropinirole and however hard you find it, it will improve your situation, Staying on your current dose won’t.

Whatever information or support you need to get through this, you can get here.

[Rish]

Thank you for your advice I wish I could do it but I can’t stand the twitchy legs if I forget my tablet I’m so tortured I can’t do it I would end up doing something I wouldn’t even like to say 😢 I just can’t do it my mind would not cope ! I would have to be put in a coma for me to get off the tablets 😞 I just can’t do it.

[Hidden in reply to Rish]

That will happen if you forget to take your tablets, it used to happen to me that's why you need to reduce the tablets slowly.. If you cut down by 0.5mg and can't stand that, then try cutting it down ny 0.25 mg.

,0.25mg less shouldn't make that much of a difference.

you still don't say how much codeine you're taking nor how much gabapentin.

I'm really sorry, I understand how difficult it is, but if you keep telling yourself you can't do it, then you will never do it.

When I first started to get the twitching I just lay in bef struggling to sleep with all sorts of negative thoughts going through my head. I used to lie there up to six hours. Now I realise how harmful that was, I learned, if it happens you need to get up and do something. Do something that distracts you.

The more you struggle with trying to sleep and the more you focus your attention on the twitching the worse the experience will be, the more anxious you'll get and the worse the whole situation will become.

If when you take all your tablets and you do sleep and/or don't twitch then since 0.25 mg is such a small proportion of what your currently taking it won't make that much difference.

Also try asking your doctor for a more potent opiate e.g. tramadol or even oxycodone. You can also take up to 1200mg gabapentin and if that's not enough switch to pregabalin which you can take up to 400mg.

Many people have struggled to get through dopamine agonist withdrawal, managed it and been better ecause of it. Withdrawal may be horrendous, but temporary. Not withdrawing is permanent.

[restlessnana6]

Hi you sound panicked about your symptoms, your medications and your legs. I totally get being over the top with frustration so there is no Polly Anna stuff here. Sit down where it's cool, get some iced tea or sparkling water, you are going to start by being nice to yourself. Grab a pen and paper too, something that makes you happy, I'm going to ask you to use it. Take a f2f rep breath, breathe out all the air. Jot down the days highs and 1 low point. Write out your medications and star it if you had any relief from that med. I'm concerned that you are taking so many sleeping pills on top of the m eds for RLS..

Try going see a low you can go on the sleep meds. Let me know. The goal is being very nice to you, for right now.

[Rish]

Codine 15mg gabapentin 300 mg

Sleeping tablets juts the nytol herbal tablets

[Hidden in reply to Rish]

Hi Rish, codeine is not strong enough, i would ask your doctor for tramadol. the gabapentin is a very low dose so not helping you, you need to be taking 3 times that dose maybe higher. Manerva can tell you what dose would be better for you to take. Ditch those nytol tabs they will be making your RLS 10 tens times worse. Then you will find yourself in a better place in trying to wean off the DA. Still will not be easy as i think we have discussed before, its not easy for anyone, but if you can sort out the rest of what you are taking , then you should be able to get off the DA.

[RLSBecca]

I am so so sorry it's absolutely torturous and I am replying so that you know that you are not alone, I 100% hear you and I am in a very similar leg situation. I don't have answers and I can't really put together a proper message as my head is full of turnips but I just want to validate what you are saying and how you are feeling. Please hang in there because at the moment it's especially difficult due to the shutdown situation. You are very important 🏆.

[Rish in reply to RLSBecca]

Thank you 🙏🏻

[Bat3353]

I use a neupro patch and Ropinorole 3mg at night and it works great

[Hidden in reply to Bat3353]

Its not wise to be taking two dopamine meds. if one isnt working then you need to ask if its because you have augmented on it. Adding another DA isnt a good idea.

[Rish]

I guess I have had a helping hand to reduce my tablets over the weekend I’ve only had three tablets left, I went down to pick my prescription up at the pharmacy I put my prescription in to the doctors last Wednesday and on Friday I went to pick my tablets up and the pharmacist refused to give me it till Monday which is today so over the weekend I have had three tablets for Saturday and Sunday I’ve had to take 1 1/2 at night so I’ve lost 1 1/2, it’s been torture absolutely torture we’ve got really bad weather here high winds lashing rain thunder and lightning and I’ve had to walk and walk for miles in the rain absolutely come home soaking wet bad head bad back which makes my legs worse I can’t win I just can’t win, sleep is impossible but have cried for two days .

[Hidden in reply to Rish]

You won't win until you sort out the others meds you are taking. Also you have to wean very slowly off the DA. That can mean up to a 1/4 of a tab less for a week or two before you reduce the dose again