Nice to find you. I have had RLS for forty five yrs

Whether new to RLS or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
badnights
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Location: Northwest Territories, Canada

Re: Nice to find you. I have had RLS for forty five yrs

Post by badnights »

you should not have too much trouble getting your concerns validated. I will ask my mom to see if I can point you in the right direction in regards to finding a doctor/inexpensive way to finally give you a diagnosis.
I agree, you shouldn't have too much trouble if you make an appt specifically to talk about the sensory issues. Describe them first on paper if you can, to help focus your thoughts. Justkeep's help will make it easier, and doing some reading beforehand will help even more. I feel very hopeful for you about this.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

oceanwalker
Posts: 128
Joined: Fri Aug 23, 2013 12:02 pm
Location: BC Canada

Re: Nice to find you. I have had RLS for forty five yrs

Post by oceanwalker »

Good to meet you and I am so sorry this has all happened to you.
You have to be an incredibly strong person to have endured aLL you have!!
I hope and Pray things improve.
Am new here so I am learning fast.
My first episode with RLS was as well when I was young (60+now) and then off/on
After the last surg I had it's been every day 24/hrs/day.
Anyways I will not bore anyone atm Bcos mine's not anywhere as severe as most here.
In any event I am extremely happy I found this site.
Thank you all for sharing. (still learning to navigate this site)
Sincerely,,,, Oceanwalker

ViewsAskew
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Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Nice to find you. I have had RLS for forty five yrs

Post by ViewsAskew »

oceanwalker wrote:Good to meet you and I am so sorry this has all happened to you.
You have to be an incredibly strong person to have endured aLL you have!!
I hope and Pray things improve.
Am new here so I am learning fast.
My first episode with RLS was as well when I was young (60+now) and then off/on
After the last surg I had it's been every day 24/hrs/day.
Anyways I will not bore anyone atm Bcos mine's not anywhere as severe as most here.
In any event I am extremely happy I found this site.
Thank you all for sharing. (still learning to navigate this site)
Sincerely,,,, Oceanwalker


You will NEVER bore us!!!!! It's always horrid to have this - no matter how often you do. And, since you're having it 24 hours a day, I'd say that's pretty severe.

Since you had a surgery, have you had your blood levels checked? We often lose blood in surgery and that may make our symptoms worse. If you haven't, please get your ferritin and your hemoglobin checked. You want your ferritin to be at least 50 and 100 if you are taking pramipexole, ropinerole, rotigotine, or carbidopa/levadopa. There is also a school of thought that something about the surgery makes it worse and we can't do anything about it - we have no idea if that is true or why it's true if it is.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

rthom
Posts: 1530
Joined: Sat Dec 31, 2011 3:03 am

Re: Nice to find you. I have had RLS for forty five yrs

Post by rthom »

oceanwalker wrote:Good to meet you and I am so sorry this has all happened to you.
You have to be an incredibly strong person to have endured aLL you have!!
I hope and Pray things improve.
Am new here so I am learning fast.
My first episode with RLS was as well when I was young (60+now) and then off/on
After the last surg I had it's been every day 24/hrs/day.
Anyways I will not bore anyone atm Bcos mine's not anywhere as severe as most here.
In any event I am extremely happy I found this site.
Thank you all for sharing. (still learning to navigate this site)
Sincerely,,,, Oceanwalker



Thanks for the support. We are glad you found us here too, Personally I always look forward to hearing from new folks and hearing the stories.
I hope in reading through you are not getting the impression that we concern ourselves with who has it worse--I haven't found that here--so I hope you feel comfortable enough to share with us. If you are getting that impression, please take it with a grain of salt, it's probably not intended. Some of us are just "yappy" as I'm sure you'll see (Me--LOL).
I was wondering how long ago was your last surgery? It may be that your WED has progressed is likely to stay at this level without some help, or maybe as Ann talked about It may be that the surgery has aggravated it in one way or another--this might mean fairly easy or good improvement can be made with the symptoms. :mrgreen:

oceanwalker
Posts: 128
Joined: Fri Aug 23, 2013 12:02 pm
Location: BC Canada

Re: Nice to find you. I have had RLS for forty five yrs

Post by oceanwalker »

Thank you both Ann and rthom.. and whoever else :)
My surgery was just in Mid March of 2013.
My doc will not give me the iron tests nor the ferritin nor give me a referral to a neurologist. He stated that the test done prior to surgery is good enough and that neurologists will just dispense more drugs and do nothing else. I was beside myself when he said it.
He then told me to stop my ropinirole and take this new *muscle relaxant Bacloven* ? which made no sense to me nor the pharmacist.
Anyways I did as suggested and it was a night from under hell:(
The next day back on ropinirole. Never again the * grrr muscle relaxant.
BTW so far I find everyone extremely helpful here:)
I am somewhat angry with my doc. Sometimes doctors just seem so ill informed re: WED/RLS
Thank you all for your help and TY for everyone's kindness:)
Sincerely, Oceanwalker

oceanwalker
Posts: 128
Joined: Fri Aug 23, 2013 12:02 pm
Location: BC Canada

Re: Nice to find you. I have had RLS for forty five yrs

Post by oceanwalker »

oh sorry NO no blood levels checked since surg. Doc stated it was unecessary.
Again ..thank you all for your help:)
you are all miracles;)

rthom
Posts: 1530
Joined: Sat Dec 31, 2011 3:03 am

Re: Nice to find you. I have had RLS for forty five yrs

Post by rthom »

oceanwalker wrote:oh sorry NO no blood levels checked since surg. Doc stated it was unecessary.
Again ..thank you all for your help:)
you are all miracles;)



Wow, your dr is not being very helpful is he. Ok, I'm wondering if it wouldn't be a good idea for you to take Iron, Vit D and maybe C to help boost your system. As they help sometimes--maybe you'll be helped a little at least. The stress of surgery can be very draining to your body .

rthom
Posts: 1530
Joined: Sat Dec 31, 2011 3:03 am

Re: Nice to find you. I have had RLS for forty five yrs

Post by rthom »

oceanwalker wrote:Thank you both Ann and rthom.. and whoever else :)
He then told me to stop my ropinirole and take this new *muscle relaxant Bacloven* ? which made no sense to me nor the pharmacist.
Anyways I did as suggested and it was a night from under hell:(
The next day back on ropinirole. Never again the * grrr muscle relaxant.
Sincerely, Oceanwalker


I don't know if anyone is helped with the muscle relaxants--I haven't heard any but that is a limited number of folks. Personally I hate them, feel aweful and get no good outcome--but that is just me.

ViewsAskew
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Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Nice to find you. I have had RLS for forty five yrs

Post by ViewsAskew »

rthom wrote:
oceanwalker wrote:Thank you both Ann and rthom.. and whoever else :)
He then told me to stop my ropinirole and take this new *muscle relaxant Bacloven* ? which made no sense to me nor the pharmacist.
Anyways I did as suggested and it was a night from under hell:(
The next day back on ropinirole. Never again the * grrr muscle relaxant.
Sincerely, Oceanwalker


I don't know if anyone is helped with the muscle relaxants--I haven't heard any but that is a limited number of folks. Personally I hate them, feel aweful and get no good outcome--but that is just me.


You're right rthom - they don't work for us at all!
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Polar Bear
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Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Nice to find you. I have had RLS for forty five yrs

Post by Polar Bear »

Muscle relaxant didn't work for me either.

Doctor sounds like he would benefit from some information on the treatment of WED/RLS , see the link in my signature.
However he does not sound like the receptive type.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

badnights
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Posts: 5870
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Nice to find you. I have had RLS for forty five yrs

Post by badnights »

My doc will not give me the iron tests nor the ferritin nor give me a referral to a neurologist. He stated that the test done prior to surgery is good enough and that neurologists will just dispense more drugs and do nothing else. I was beside myself when he said it.
He then told me to stop my ropinirole and take this new *muscle relaxant Bacloven* ?
If that is really what he said, get rid of him. He does not work. He is broken. Find a new one that works.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

ViewsAskew
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Posts: 16259
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Nice to find you. I have had RLS for forty five yrs

Post by ViewsAskew »

badnights wrote:
My doc will not give me the iron tests nor the ferritin nor give me a referral to a neurologist. He stated that the test done prior to surgery is good enough and that neurologists will just dispense more drugs and do nothing else. I was beside myself when he said it.
He then told me to stop my ropinirole and take this new *muscle relaxant Bacloven* ?
If that is really what he said, get rid of him. He does not work. He is broken. Find a new one that works.


A BIG DITTO!!!!!
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

oceanwalker
Posts: 128
Joined: Fri Aug 23, 2013 12:02 pm
Location: BC Canada

Re: Nice to find you. I have had RLS for forty five yrs

Post by oceanwalker »

Hi Ann and All... I believe I posted more in "Need Support" another thread.
I love this site it's totally so so informative and given me so much more info and I thank you all !! * But Ann you and the others are so so RIGHT about what you previously stated * ( I am slowly working on everything)
Past visit my doc's been very supportive and I am thinking he's educated himself more. I did get all the meds I asked for; now to just find the proper amount that will work for me.
To Answer your reply Ann...*Yes you are correct Re: *A Big Ditto*
Praying things will change more as he becomes more educated. I just don't have the luxury of *doctor shopping* here where I live at this time. In the future I hope and Pray that I will find a doc experienced in WED. Until then I sort of need to be my own doc. Later I will cast a wider net. My husband's been ill and we just cannot *cast the net at this time*
This amazing site with all the info and all of your stories is EPIC! I sit here and read more every day.
One poor experience was the other day I saw a naturopath. She was more interested in having me purchase her supplements etc. than my WED> told me WED was due to all the surgeries in my life, my stressful nature & anxiety. Hmm I didn't buy it. She as well stated she was well versed with WED's. I couldn't have the ferritin test she offered at this time...only after being cleansed etc., taking supplements etc. after 3 months. This just wasn't for me. Money was also mentioned quite a bit. This did not sit right with me either. Anyways live and learn. There are other naturopaths/homeopaths/medical doctors ETC.
Right now I am decreasing my Ropinirole and then unsure if I will take a *drug holiday* or stop it altogether??
Taking one day at a time and trying to be ACCEPT my life as it is for today. **Trying**\

It is difficult for me to focus at times with no or little sleep..as you all know. I try to be clear in the posting..but I read them later and sometimes they are fractured posts. But I know everyone here understands & I so thank you all!

I will keep you all posted and I so so thank everyone for your Posts>> they are all God Sends to me. So BIG Thanks !!

Sincerely,
Oceanwalker

Polar Bear
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Re: Nice to find you. I have had RLS for forty five yrs

Post by Polar Bear »

oceanwalker - we are so pleased to have been of help and it is good to see that you feel your doctor is being more helpful.
We all find that we do a lot of groundwork and then present it as nicely as possible to our doctor. Mostly it is appreciated as they just don't have the time to do this themselves. Though if they advertise themselves as experts they should at least know more than we do.

And indeed I have many times read a post that I had done during the night and barely remembered it, or seen that it was fractured or full of typos.
Isn't it amazing how we continue to function as well as we do.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

oceanwalker
Posts: 128
Joined: Fri Aug 23, 2013 12:02 pm
Location: BC Canada

Re: Nice to find you. I have had RLS for forty five yrs

Post by oceanwalker »

Hello Polar Bear :) and yes it's super amazing how we continue to function ?? hehe WoW we do it well! With great pain and torture many times; yes! we do what we can. Sometimes I wonder how and why ...why me? How long can I go on and do this? but then I just let go and do the best I can to make the best of the worst situation.
Sometimes I wish I had a broken leg or something else that could be *Seen* but heh then I just ACCEPT and Pray .
Thank you Polar Bear and Thank you Each and EveryOne of you .
I feel safe here. I get answers and I get educated here.
Thank you so very much for all the posts / sharing.

Sincerely,
Oceanwalker

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