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So many things happening - anyone else feeling this way?

Posted: Fri May 08, 2015 6:49 am
by Betty/WV
I don't know what is happening to me. I am 79, have had rls as long as I can remember. As I aged it got worse. I was put on mirapex about 5 years ago. So many side affects that I am trying to get off it. I cut down from o.25 mg twice a day to half of that twice a day . There are no doctors in this area that understands RLS. My family doctor try's to help but he is in the dark also. I have a several other illnesses too. Fibro, arthritis, weight gain since going on the Mirpex, exhaustion. Heart problems,. Plus depression,who wouldn't be depressed? Now for quite while I have these nervous spells usually. At night. It may be the RLS, or panic attacks. It is now 2:45am. I can't relax, feel very nervous. Find myself moaning and groaning..I have no support at all. I'm on my own.. Any ideas ? Anyone else experience anything like this ?????

Re: So many things happening - anyone else feeling this way?

Posted: Sun May 10, 2015 5:43 am
by ViewsAskew
Hi Betty,

I wish I had some ideas for you. It must be hard not to be able to get to a doctor who doesn't understand the RLSWED part of it and can't help you more.

Re: So many things happening - anyone else feeling this way?

Posted: Sun May 10, 2015 2:24 pm
by Polar Bear
Betty, You say your family doctor tries to help but that he is in the dark. Can we get him out of the dark ??

I also have fibro, weight gain, arthritis, insomnia, on an anti depressant. As you say.... how can we keep upbeat with all of these things to deal with.
So fed up, on any given day - which issue is going to cause the most discomfort or limitation - I believe it is so important above all else to keep our mood up and depression at bay. Take whatever dr suggests to raise the mood - a better mood means we are in a stronger position to deal with everything else.

What is the alternative.... so let's see if your doctor is willing to learn !!

Do you have the book that I am always ranting on about?
This book is wonderful, it is easy to read and can be used for discussion purposes with your doctor.
Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening. Make sure to get the second edition. These Authors are at the top of the league when it comes to the treatment of WED/RLS. It can be found on Amazon.

It is quite expensive but is worth every penny, it answers many questions, is easy to read. And most of all, it's easy to mark a section with a pencil mark or a post-it, take it to your doctor and say - what do you think of this as a possible treatment?. Do not let your doctor put you off, if he has nowhere else to go then he needs to work through the advice given in the book with you, or go and learn from the RLS Foundation Web Site.

Also, have you had your ferritin serum level checked, this is pretty important. It is a blood test that is not normally done with routine blood works and you need to ask for it. This tells the level of iron stored in your brain – and that is what is important to us sufferers of WED/RLS. You need a level of around 100, especially if you are taking a DA drug such as mirapex. When getting the results of this test please ask your doctor for the actual level = do not accept ‘normal’ as an answer. Doctors and Labs may consider 20 to be normal… but it isn’t normal for us.

Make notes to discuss, questions to ask, when you have a doctor's appointment.
Tell him that you are suffering, describe your rls sensation as pain (indeed I believe the sensation is worse than pain), it's easier for a non sufferer to get to grips with this description.

Your goal is for pro-active treatment.

Also, you say you have halved your dosage of mirapex because of side effects.
Did you decide to do this yourself, have you had any sort of alternative medication to take to help you through the reduced mirapex.
Are your symptoms worse since reducing your mirapex, could feeling so bad be part of the withdrawal from Mirapex.

I can only say that if you can't get to another doctor who is 'expert' in the dealings of rls, then your present doctor needs to step up and make a few enquiries and do a bit of reading.
He may not understand RLS, but he can work from the guidance of the book as mentioned above.

Re: So many things happening - anyone else feeling this way?

Posted: Mon May 11, 2015 9:22 pm
by Betty/WV
I have the 1st edition of the book you mentioned. I will have to order the other one. I also have other books by Dr. B and have corresponded with him on the internet.
I have had my ferritin level checked in the past. And have a prescription to have it checked again.. It was around 40 or 50 last time,
Sometimes I just get so tired of the whole deal. Going to doctors, trying prescriptions that don't work or making matters worse.
My doctor has tried several meds.. I am taking Wellbutrin now. And he gave me Norco to help as I was cutting down on the Mirapex.
I have an appointment with a new neuro. On the 26th. I'll see what happens with her. I don't know how to start describing
To her my situation. It is years of suffering. The weird thing is, years ago I found a doctor who understood RLS, was very caring and things were going fine and then he had a massive stroke and could no longer's been down hill since o
I will try some of your suggestions. Thank you, I appreciate your response very much...

matters worse.

Re: So many things happening - anyone else feeling this way?

Posted: Tue May 12, 2015 3:19 am
by debbluebird
I'm sorry you are having such a bad time. I went through all of that, with depression and weight gain. I've been on many medications. I was taking Mirapex for many years, until I couldn't take it anymore. After trial and error I ended up taking Methadone, 5 mg. a very small dose. I take one at 5 pm, another around midnight, and if I'm having a hard time I will take a third around 4 am. I never take more. Sometimes if I'm having symptoms in the afternoon, I will take the 5 pm dose early. It is hard to stop Mirapex. May take a couple of weeks. I took several things to stop the Mirapex, but that was before I found the Methadone. Not every doctor is willing to give that, but doctors who are willing, it does work. But of course, there are people who can't take it. I don't have any side affects from it. At first I did have nausea for a couple of months, but then that went away.
I hope your doctor is willing to help you.

Re: So many things happening - anyone else feeling this way?

Posted: Tue May 12, 2015 9:54 am
by Polar Bear
Betty - the second edition of the book is an 'updated version' of the copy that you have. Perhaps more up to date with regard to ferritin and augmentation.
Perhaps another member will be able to confirm to you if it is worth buying the second edition - if you already own an original copy.
Don't want you to have to lay out money unnecessarily.

As you are finding it difficult to explain your situation to a doctor who has no great experience in RLS what about writing it down.
Make a Word Document that you can change/amend as you go along.
Make notes, then put them together to be clear and understandable. Don't repeat - so that the document is as short as possible.
List the medications that you have tried and whether they were or were not of benefit.
Use your Restless Legs Book to get good symptom descriptions that are relevant to you and use those.
Explain how this has all affected your life, your sleep and the difficulties of coping with this disease whilst coping also with other medical issues.
End with numbered questions.

Then when you have a complete document - go through it and where possible condense it- exchange one word for two, exchange 3 words for 6.
Reduce the number of words as much as possible without losing any content.
Have this saved for future use.

This is just an idea off the top of my head but I think it could really work to get your information gathered and not have to worry about not being able to explain to your doctor.

You will then have a document that you can use when you attend any medical appointment with any medical doctor.
And it can be updated and amended according to who you are seeing.

Re: So many things happening - anyone else feeling this way?

Posted: Mon May 25, 2015 3:37 pm
by Fefster
This is my first post but since I have recently been diagnosed, I can absolutely relate to the awful sensation of helplessness that goes with this terrible condition. No helpful advice yet as I am just at the beginning of what feels like a long road, but just some support from someone feeling the same way.

Re: So many things happening - anyone else feeling this way?

Posted: Mon May 25, 2015 5:07 pm
by Betty/WV
I know there are a lot of things happening in my life, from all directions. But especially health wise. I have had this disease ford as long as I remember and I am 79. I am going to see a new neurologist tomorrow. But I am not to optimistic about it as I have seen many doctors over the years and no success . Except one put me on pramapexole, which I am now trying to get off of. From my reading, in time it can make the RLS worse and then you are in. Real trouble.

Wish you success in finding relief.