Does RLS cause you to avoid other health issues.

For everything and anything else not covered in the other WED/RLS sections.
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jan3213
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Postby jan3213 » Sun Mar 09, 2008 1:15 pm

Oh, Lynne, I know exactly how you feel!! And, several of the rest of you have echoed my feelings exactly!!!

During my two year quest to find an answer to my numbing left side, I was told by well-meaning friends (and family) to go to another doctor (which I ultimately did). However, I was right where you are. I hated explaining to someone else, for the 50th time, what was going on, why I'm on so much medication, what RLS is!

And, I'm not sure who said it...but, if docs would only listen instead of hearing what they want to hear and then writing in our charts what they perceive to be the truth. I've also had that problem--my charts from one particular doctor did not put me in a good light. Ha! Turns out he was the stupid one--there was something wrong with me, something big!

I was told by a wonderful nurse in the ER one night after hearing several doctors say among themselves that my "problem" was anxiety and they could find nothing. She closed the curtain, took my hand and said that there was something seriously wrong with me, that it had just not been found and not to give up. I was in tears, beaten down and scared to death. She gave me hope and the courage to continue on until I found an answer. I didn't get her name, but I wish I knew who she was.

Lynne, don't give up!!! You know there's something wrong. You know your body. You are not a hypochondriac, a wimp--whatever someone might choose to call you! You are a courageous woman who has been through a heck of a lot in the last few years. You are smart and aware of changes in your body. Hang in there, honey!!!

Love
Jan

P.S. Thanks for starting this thread. I also really appreciated hearing what everyone else had to say, as well. I really think this could help a lot of people.
No one is alone who had friends.

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ctravel12
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Postby ctravel12 » Sun Mar 09, 2008 4:09 pm

Last year I had a dr that would have just have staff talk to me about my problems as she did not have the "time" to sit and talk to you. I sent a post out about the time when all of this was happening. She made you feel like "hurry up as I have other things to do" then listen to you.

My previous (note I said previous) dr (not her again) but her staff said that I had kidney problems and to go to a specialist. I went to see this so called Kidney specialist and he told me that I was functioning on 40% of shrunk kidneys and that eventually I would either have to go on dyalsis (sp) or eventually have a kidney transplant. I ran out of his office crying.

Thank goodness I had the foresight to get a second opinion and went to the Mayo Clinic in Scottsdale to find out that I do not have shrunk kidneys and one was smaller than the other one which was normal and was funtioning at 72% and that was good for my age.

Well needless to say I fired my dr and went to another one and she is wonderful.

I also want to say this board was absolutely wonderful with the support that I had received and all the prayers that went out for me.

Thank you to everyone that was there for me.

Lynne I agree with Jan to not give up as you know your own body and thank you for starting this thread. You know you are in my prayers everday and will always be.
Charlene
Taking one day at a time

lorabell
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Postby lorabell » Sun Mar 09, 2008 9:27 pm

The best part of having our health issues is knowing we can come here when it just gets to us. !
We know we will encounter more uninformed dr's ,(uneducated morons to me ) but when we come here, or to chat, we know we can help each other.
Char, I think I would have lost it and prob. have been arested had I sen this Dr.!
Love and prayers,
Lorabell
aka
wowobl
Always remember, if you cut off your limbs, you'll have phantom rls and nothing to rub .LOL

ViewsAskew
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Postby ViewsAskew » Sun Mar 09, 2008 10:32 pm

As mad as I get at our doctors, I don't necessarily blame them about the knowledge factor. And with insurance regulations being what they are, I also understand the "need" for 8 minute maximum visits in order to be profitable. Bedside manner is a different issue.

They didn't learn about RLS or most sleep issues in school. I bet more is discussed now, but even ten years ago? Nada on RLS. Heck, I'm not even sure the term augmentation existed yet. I read one time that it takes 8-14 years for doctors to learn in medical school what is cutting edge today.

Insurance in the US is a huge issue. I don't want to start a debate about what we need to do, just acknowledge that from many perspectives, there are problems and these affect us...the final consumer. Even those of us without insurance are affected as our rates can actually be higher than those with insurance.

A doctor's willingness to listen, however, is what is truly at issue. If they listened, even if they didn't know the answer, they would be able to help us. We've talked a lot about how WE need to talk to them so they CAN listen to us.

If we all work on that, every doctor we see can benefit from our guiding them to learn more about RLS. We are truly in a position to help all who come after us into that doctor's office. I can remember the first time my doctor said to me, "Hey, I had this guy come in and because of you, I realized that he might be having RLS issues."
Ann - Take what you need, leave the rest

Managing Your RLS

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lorabell
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Postby lorabell » Mon Mar 10, 2008 5:07 am

Hi Anne.
This is a terrific post. If the iNs. co. don't get you, something else does.
And to have a dr. say they appreciate us telling them about rls, almost makes it worth haing it. Notice I said " almost ". LOL
hugs,
lorabell
aka
wowobl
Always remember, if you cut off your limbs, you'll have phantom rls and nothing to rub .LOL

KBear
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Postby KBear » Mon Mar 10, 2008 5:07 pm

I have recently developed a really good partnership with my new GP and OB Gyn (knock on wood). Because of an insurance change I had to switch clinics two years ago. Then just as I was starting to develop a good relationship with a new GP she decided to go part time (after having her second child) and focus on her speciality, Rheumatology. (sigh) So I closed my eyes and picked a new doctor at the clinic, and scheduled an appointment. Knowing I would have to explain the RLS and what I had already tried all over again along with all of my other history.

Unfortunately before the first appointment with my new doctor I was hospitalized unexpectedly. We met for the first time at the hospital. The only good thing about this is he will always remember me. I saw him three times while I was in the hospital plus a follow up visit after I got out and then my regularly scheduled appointment. So five visits in less than a month. I know that he knows my chart pretty well.

He recommended the OB Gyn visit to rule out other issues and I met another great doc who is now another partner in my health care. So I am feeling blessed with good doctors lately. I hope it continues.
Kathy

Link to the Mayo Clinic Algorithm:

http://www.mayoclinicproceedings.com/pd ... 907Crc.pdf

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ctravel12
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Postby ctravel12 » Mon Mar 10, 2008 8:34 pm

Hi Kathy what great news and agree with you that it continues.

Please keep us posted on how everything is doing with you.
Charlene

Taking one day at a time

becat
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Postby becat » Sat Mar 15, 2008 12:27 pm

Kathy that is awesome news. Sorry I'm catching up on reading a bit. :D

Well, I'm venturing into my second attempt to get help for my "other" health issue. UGH!!!!!!! :roll:

After all of last year, the docs, tests, surgery and then the kick I took less than a month post op........I dread this so.

Lorabell, I followed your lead and made my own appt. with my GP.. It was delayed 2 times and to be honest I was relieved, lol.
I finally saw him this week and had a torturous 2 hour closed MRI yesterday. ONGosh, they taped my feet together, who does that? Thankfully, I had permission to premed a bit before, but Knowcked out could have so much better. :roll:

I know I will get some answers and I have two different surgeons in mind. One general and one called a Pelvic Specalist. I think his work is male and female. Only problem with im, is that he is in Ft. Worth, that's a good hour drive in no traffic here. I know y'all, it's not a plane trip and I would not have to walk, lol, but I hate to be that far away from home base. It's totally out of my comfort zone, driving in a place I know little about. Big size city, many stupid streets.

I'm really fighting myself on this one, trying hard to learn from last year and take better control for myself. It ain't easy, for sure.

I'll be fine, I hope. No, I know, with all the medical stuff. It's gone on too long and the answers are there. I'm prepare for a scope surgery if needed, but this will change for the positive. I'm ready to get my full life back, I have things to do.....you know, LOL.

My biggest problems, come down to three things on my part.

1. Asking for help in the first place. I was raised to be able to solve my own problems. Add, that doctors were rarely used or needed. So just going to an appt. is big for me. This results in prolonged problems, because I don't make appts. timely. That is bad, I know.

2. Trust. I have major trust issues with docs.. Yeah, so they take this oath, but they often do not mean it. It's proof is in the pudding to me, and not just because of RLS, not all together. For many things I have has happen.
This is important because I give them information they need to know, but tend to hold off some of the more personal stuff. Not if it's nessecary to the path of diagnosis or treatment, but I don't often care for them to know me and I so dislike the idea of having to prove something to them.

The one exception is my GP of 20+ years. We have only had two arguements in that time, one over a treatment for my son, which I refused. The other because of the mess that happened ALL last year. I keep him because he really knows me and my family, and I can say no without too much of a fight. He understands the way I was raised and that I do have an opinion........rightfully so, I share it. Yes, last year I felt like I really needed someone else at some point, but the lesser of the evils was not telling me to leave him. Maybe hop on my Turbo BRoom, but not flush 20 yrs with him.

3. I have to cry for a good 3-5 minutes when I get to a boiling point, before I can really fight with fact and without emotion. That never comes off good, EVER! However, if they would let me get through that time and give me the chance, I could Fact them, per each item they disagree with me about. I'm working on that, because I know that a calm face and facts wins over the meltdown prior.

Melting down happens, it just does. I know I am not the only one. I do think that there are times it's the only way to be heard, is to react just as you would to some of the things we here. Docs need to know when they have crossed a line, but we need to say that out loud. Tell them why we are at our wits end. My RLS doc. probably thinks I'm just looney, a wuss, and dramatic.......so be it. If a doctor is not lisitening and you can't get your point across, it's wasted your 15 minutes of time slot......and you have to wait another 3-4 months to see him or her. Why is that not a bigger issue with us and why can't we change some of that?

I think we can. Actually, I'm sure of it. We could ponder that one out loud.

Just wanted and needed to write. I'm not looking forward to finding, testing, and getting the help I need with my "other" health problem.

UGH!

Hugs to all,
Lynne

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ctravel12
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Postby ctravel12 » Sat Mar 15, 2008 6:03 pm

Hi Lynne thanks for posting and am so glad that you are going to get things checked out. It is so important. Now the part of the MRI taping your feet together; I am so glad that you were able to have your meds.

Just thinking about an MRI I get panic attacks as I am extremly claustrophobic. I am soooooooo glad that you want to take better control of yourself.

Please keep me posted, or should I say all of us, as what the dr or drs are going to do.

Love you my dear friend.
Charlene

Taking one day at a time

Polar Bear
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Postby Polar Bear » Sat Mar 15, 2008 7:05 pm

Hi everyone

I don't know what I did duuuhh... but spent a half hour texting a post and then lost it. I think I timed out or something... Or perhaps it will appear somewhere it shouldn't be :oops:

I'll give the shortened version this time.
Yesterday I went to see a neuro, referred to him by my gp. I had seen this neuro privately a year ago when he told me yes, I had severe rls and if and when my current meds ceased to work I could try levadopa. This didn't inspire me.

Yesterday, having taken a half day off work made my way across the city to his clinic, waited an hour past my appointed time, I was then seen by his Senior Registrar who, after I asked her, told me she was not familiar with rls but had 'heard of it'.

Now. I know that everyone has to learn, but she asked me questions from scratch. I told her the full information would be on the last few letters on my file, but she said she preferred to hear it from me.

Such as: How long have you had rls.... Do you really have to move to ease symptoms.... etc. etc. Yes yes I do have to move, it's a movement disordor. I was very exasperated cos I wanted to make the most of my time allocation. I thought she had a superior way with her and I am sure she could see I was getting impatient. Then, it was as tho we silently agreed to change attitude and it was ok. I think she realised that I knew what I was talking about. Also I had the algoritm with me. She even took a note of Dr B.s details

I asked why gp had referred me and she said that he felt I was a complex case :roll: and would appreciate treatment management advice.

Also, I thought I was being fobbed off with a junior who knew nothing about rls but then she went and got the neuro and it would seem she was just covering the ground work.

End result however, was that he confirmed he would write my gp and say he approved of my using codeine and sleep aid (along with the requip) just so long as the meds were monitored and I was aware of the issues. I was pleased with this cos gp has not yet put these meds on repeat and I have been concerned that he may decide not to give me any more of them. Apart from approving these meds nothing new was achieved. Did I think it would be ?? of course not.

The one think that was reinforced was the feeling that we on this forum do indeed know more about rls that the 'experts'.

Betty
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Aiken
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Postby Aiken » Sat Mar 15, 2008 8:48 pm

Consider it another baby step, Betty. Anything you can do to move towards an ideal treatment is an improvement, even if it's small. I'd call it a success.

I think almost anyone who's had a condition for a significant amount of time, and who has a curious mind about it, will eventually know more than their doctors. There are very, very few doctors who have the option to concentrate on one single malady, so it's only fair to expect that most will not have spent that sort of time researching ours. Really, given that it's only just gotten enough hard evidence (genes, brain scans) to convince people it's real, it's not surprising that most doctors have previously concentrated their learning efforts elsewhere.

I think it'll all get a lot better in the next few years. If nothing else, doctors will realize that becoming an expert in RLS will bring them 10% of the population as business. ;)
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.

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Postby ViewsAskew » Sat Mar 15, 2008 9:41 pm

Aiken, that's the truth! I tried to tell one of my doctors - who wasn't intersted in learning anything - that HEH! If you learn about this, your will become the "go to" person about RLS - not only your current ten percent, but every other doctor's ten percent....

he didn't get it. I left.

Betty, I'm with Aiken - it's a start. I also agree that it's not surprising we do know as much or more (in some ways) as our docs. No, I don't know complex interactions between things or lots of other medical stuff, but about RLS, I'm pretty savvy. I've spent hundreds of hours, if I added it all up, getting there. I should know something! My docs are lucky if they can find 15 minutes here or there to read a study or article....the benefit they have is that they understand it all better the first time - I might have to do other research to know what some of the terms in the study mean. So, they can synthesize it much more quickly.
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.

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Postby Polar Bear » Sat Mar 15, 2008 11:31 pm

Thanks for your comments folks. I think the one thing I have discovered is that, so far in my experience, docs are willing to listen and take on board the algorithm, if they feel you are willing to be reasonable with them also.

Thanks again, Betty
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

lorabell
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My Apologies

Postby lorabell » Sun Mar 16, 2008 6:59 pm

For someone who can preach to the choir, I wasn't listening to my own sermon the past few weeks.
I had switched back to neurontin, and I won't do it again. Down the toilet the go. All of them !
We all know we have to keep stress down as much as possible and here I was, a different med, which too late I rememberred why I stopped it, It drives me nuts.
So, with neurontin and my stress level to 200, I drove into town , sometime aftre midnight Thur. night and bought smokes. ( I had quit and doing well. ) I also ate 1/2 gallon of icecream before something clicked and I called 2 dear friends to take me to the ER. Imagine me driving myself! Don;t want to go there.
As I read the posts, I felt like such a fraud.
I am so good at giving advice, but not so good at taking it.
I was nuts, plain and simple.
Thank heavens my friends came and got me they and told me later I behaved, and act. fell a,sleep in the ER. LOL I wanted to sleep and fell asleep in the one place I needed to be awake for. Go figure.
Anyway, Lesson learned. Watch the meds, keep a journal, ( and I will now LOL ) but please , when you see, ( if you realize it ) yourself getting out of control, call, anybody. I am so thankgul for Char and Cyn, and the ladies who willingly crawled out of bed and came to my rescue. ( at 4 AM ) !
Guess I can't bring up the lion in the room April's fools day when I see my pC. He called to checek on me. Guess I scared a lot of wonderful , carring friends.
So, to all who I preach to about our meds, our dr's, our bodies and to pay attention t them, I am sorry. I am eating the crow now. LOL
Hugs, lorabell
PS, thanks to all of you who post and care and get us thru. we really are all in this together.
Always remember, if you cut off your limbs, you'll have phantom rls and nothing to rub .LOL

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ctravel12
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Postby ctravel12 » Sun Mar 16, 2008 7:51 pm

Oh Lora you are not nuts at all. You found out that one of the meds were not doing you good and took the necessary steps to correct that. I say that is very courageous.

I am just glad that I was able to be there for you and you know would do it in a heartbeat and so would cyn and everyone else.

Now and then we all do things that will triggerr the rls. I for one certainly have and have dearly paid for it. Will it happen again; well that remains to be seen but hope that I use some common sense.

Hang in there girlfriend and anytime you need me or anyone else you know we are just a step away.

BTW I listen to your message and was glad to hear that.

LYGF and have a good day.
Charlene

Taking one day at a time


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