alone 2011

[lee1983]

I write post but I never see them why? I am new .

[Joolsg]

Hi Lee,

I am seeing this post. Can you see it now?

Welcome to the site. Do you take any meds for your RLS?

[lee1983 in reply to Joolsg]

Requip 8mg

[involuntarydancer]

Hi Lee, and welcome on here. Now you are not alone. We are seeing you and your posts. Now that you are getting through to us, why don't you tell us about yourself?

[lee1983 in reply to involuntarydancer]

okay but it is hard to believe I married at 15 had 3 children and my husband died with brain cancer. 2years later I married a pharmacist he was murder in a robbery at the pharmacist 2 years later I married a school the most wonderful human on earth one day he was up about 30feet cutting a trim limb it kick back hit his ladder and he fell dead at my feet I have been a ER nurse for 20 years but now my back and legs are gone so now I am74 with a huge ranch house and 3 acres of land to care for all by myself I have a son but he doesn't have a mother just a jealous wife haven't seen him in 5 years.' I am here alone with a house and land I cannot take care of any longer.have had RLS all my life.Now my question is What to do?

[lee1983 in reply to lee1983]

RLS there's no one thing it is a hit and miss if the medicine the doctor give you work okay that a hit if it dosen.t he guess wrong

it all a guess that all it is a guess and remember it is just a pill

[nightdancer in reply to lee1983]

What are you trying to say, "it is just a pill?" I am confused as to what point you are trying to get across to us by saying "it is just a pill'. I know all the meds used for RLS, so if you tell us if you have tried anything else, that would extremely helpful for all concerned. AND, I am wondering, you mentioned you have not seen your son in 5 years, which is sad, but you said you first married at the age of 15, and had 3 children. Can either of them help? I have to agree that you should put your house up for sale, since it is too much for you, and maybe move closer to a part of town where there are more facilities closer to you.

[involuntarydancer in reply to lee1983]

Wow, Lee! That is a dramatic and tragic life story. 74 seems too young to be marooned in a huge ranch house (lovely as that sounds). And without doubt rls robs us of the energy to function normally, let alone manage a large house and 3 acres.

Like all the others have said 8 mg seems a very high dose of requip unless you are also suffering from parkinsons. Do you have any problems with impulse control disorder? I developed this when I was on pramipexole (also a dopamine agonist) and spent hours (and a ridiculous amount of money) shopping on the internet. With requip, once the dose gets too high it can make the rls MUCH worse and maybe this has happened with you.

Most people would advise that you cut down the requip dose very gradually and replace it with a different class of medication. Alternative meds are opioids such as tramadol which is usually pretty successful in treating rls (if you can persuade someone to prescribe it for you) or gabapentin or pregabalin which are sometimes effective against rls.

Have you had a chance to look at the Johns Hopkins Hospital website? They have a team of rls specialists and they have some helpful webinars and short videos. The other extremely useful resource (other than this forum which is full of helpful informtion) is rlshelp.org run by Dr. Buchfuhrer, another world renowned rls specialist. Dr. B responds to questions sent to him by 3mail from sufferers from around the world and the patient questions pages on his website are very helpful. You could maybe contact him direct for his input.

The final issue is iron. It is worth getting your serum ferritin checked if you haven't done so already. You will see that the Johns Hopkins doctors are in favour of raising the figure to over 100. Some people find that their symptoms improve a lot when they get their iron levels up but you do need to be careful as too much iron can also be dangerous.

[LotteM]

Wow. That is according to latest insight way to high and you should be very vigilant about augmentation. Or do you take it for Parkinson’s?

And to see appear what you just wrote as a reply, you may have to renew the page.

[lee1983 in reply to LotteM]

I am a nurse have been one for 20 years and I am well educated on medicines and I tell you now it is only a pill.

[LotteM]

Lee, what a sad story of your life. I hope you at least will feel supported here.

I wrote about the 8mg of ropinirol being way too high. Maybe you can explain why you got prescribed so much ? And also how and when your rls symptoms present themselves these days? That may help us to give you better information. I do fear that you have already augmented...

[lee1983 in reply to LotteM]

just started about 15 and has never stopped a neurologist put me on this much in Washington dc but it clearly mess with your mind so binging a nurse I just cut them in half .I try to stay on my feet as much as possible sitting makes it much worse standing in one spot kills my back 4 laminectomies so I just keep moving. I have taken it all (medicines) at onetime or another . some doctors will write for it some want I go to DC for refills.

[Joolsg in reply to lee1983]

Lee,

You have had a lot of tragedy in your life and you need some relief from the terrible pain and RLS you are now suffering.

As you were an ER nurse, you are more likely to understand the medical reasons for your RLS. Your back has clearly triggered it.

However, as Lotte says above, the dose of Ropinirole you were prescribed ( originally 15mg which you cut in half to make 7.5-8mg) is far too high for RLS. The fact that you can no longer sit without getting RLS in the day means you are suffering Augmentation.

The only way forward is to reduce the ropinirole very slowly over months. As you have 15mg pills which you already cut in half, this will only be possible if you go back to your doctor and ask for 1mg or 0.5mg pills. Take 8mg of them a day instead of your existing regime, then slowly reduce by 0.5mg every 2 weeks.

Youwill need the help of your doctor with this as you will nedd to take a strong pain killer like tramadol during the withdrawal stage. You will also need to start taking new meds to take the place of Ropinirole like Gabapentin Enacarbil or pregabalin.

As you live alone on a big ranch, also maybe consider selling up and moving to a smaller house in a town where you are nearer to a doctor and where you could perhaps join local groups. Just thinking of your ability to get around when in pain with your back.

[Joolsg in reply to Joolsg]

Lee- Requip is Ropinirole Hydrochloride ( in the USA it goes under the name Requip)

[lee1983 in reply to Joolsg]

what is your point

[Joolsg in reply to lee1983]

I wrote you a longer post about Augmentation and referred to Ropinirole. Then I realised you had said you were on Requip. I’m sure that you know they are exactly the same drug but just wanted to clarify my earlier post.

[Neverache in reply to Joolsg]

Joolsg, you write in response to Lee that her back pain has clearly triggered the RLS. Can you tell me more about why this is the case? I was on opioids for RLS for years prior to a back injury, so clearly I was bad to begin with. However, it went from bad to burning in hell every night starting the day after a cervical fusion. I don’t understand triggers well with RLS. I do for migraines.

[Joolsg in reply to Neverache]

It seems to be the case that RLS is triggered or made worse by any operations on the back. I have no medical statistics to support this statement, it’s just from Reading and seeing all the posts on this site over the last few years.

I’m sorry to hear your RLS is so bad. Do the opioids not help at all?

[Neverache in reply to Joolsg]

Don’t discount patient evidence! If you have read that repeatedly, it is likely the case (and it certainly is the case with me).

Oh yes, the opioids are a godsend. I barely feel the RLS at all.

Thanks for replying.

[Joolsg in reply to Neverache]

That’s wonderful. I’m so pleased for you.

Take care

[Neverache in reply to Joolsg]

Thanks. Everyonehere is so nice.

I should specify that it is the Fentanyl patch that is saving my life. OxyContin did nothing for me. Percocet gives me 2 hours of relief and I have dreadful RLS for 23 hours a day. It is only when I was prescribed the patch for my back that I had relief and I was only prescribed it two months ago. I am on cloud nine right now because of it. I never thought I would feel this way.

[lee1983]

thanks for asking

[Eryl]

Remember to click 'Submit Reply' and not just hit 'Enter' after completing your writing and there should be no problem. You can see this one, can't you? So you must have done it this time.

[beady3]

Hello Lee, sorry for your sad letter, i was on Requip also up to 8mg then I had augmentation so be careful as that’s not nice ,, Have you tried other meds or have you been on just that one , this forum will give you so much information , wish I live near you I would pop in for a cuppa , there is always someone up at night walking the floor xx

[nightdancer in reply to beady3]

Beady, you are so right, 8 mgs is waaaaaaaay over the top for a dose for RLS. Should be NO MORE than 2 mgs, preferably 1 mg for a therapeutic dose.

[lee1983]

thank you for your kindness but if I hear the word augmentation again i scream of course I have it . i do not need a doctor that where this circus started

[nightdancer in reply to lee1983]

Well, I am sorry the word augmentation makes you want to scream, but that is what you are dealing with here. Are you on ANY other meds for anything else?

[nightdancer]

Well,, your post is showing up, so apparently you have figured out that part.

[nightdancer]

Welcome to the group, first. I have been going thru the posts and replies, before I wanted to type anything. So, you have been getting excellent advice here, and I assume that is what you want since you asked what to do? There is not much else to say, except for the fact that you never should have been on 15 mgs of Requip EVER, and even 8 mgs is 4 times the recommended therapeutic dose for the treatment of RLS with this med. I will not say the "A" word, but that is what is happening to you. The only thing that is going to fix this at all, is to wean off the med, and your symptoms will get worse, hence why it has been suggested that you need to have another med to help take it's place. Dopamine withdrawal is likened to withdrawal from cocaine, and going cold turkey with nothing to help you is a horror, plain and simple. You have not said how severe the RLS is right now, or what you have tried in the past. I realize you say you understand meds, BUT, usually when someone says they have tried everything, they really have not, even if they think they have. Can you tell us what you HAVE tried? I promise we will have suggestions, but if we do not know what you have tried in the past we would just be wasting our time and yours. I have been managing RLS groups for 27 years on and off line, and have studied pharmacology and did go to nursing school in Arizona. But, if you do not get that Requip reduced sloooooowly and we mean sloooooooowly, then you are not ever going to get the RLS to calm down. That is a fact, and we want to help, but still need more information to help you better.

[Hidden]

Hi and welcome!

I am so sorry to hear of your situation. If I may be so bold, you sound angry for being where you are. I completely understand that, as I am too. Life isn’t fair, is it? I’m going to recommend two books that my therapist recommended to me, okay?

“How to Live Well with Chronic Pain and Illness” by Toni Bernhard.

“How to be Sick” by Toni Bernhard

I’ve only delved into the first one so far. This is a wonderful book that is helping me so much! The author was diagnosed with a chronic illness in 2001, so what she says helps that much more because we can relate to it. Not only does she talk about how she deals with her illness, but she talks about how she would prefer family and friends react (what to say and what not to say).

I’m wondering: do you have family members who can help you out? You needn’t go through this alone.

Take care,

Jessica

[Billdel]

Hi Lee.I am saddened by your history, but, I know you will get a lot of good, experienced help from the many members, here. I too am struggling with RLS, which I have had for many years. Being a new comer, the best I can offer is to Pray for relief of your RLS and an optimistic up turn in your life. God bless you.

Bill