Does RLS cause you to avoid other health issues.

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becat
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Does RLS cause you to avoid other health issues.

Postby becat » Fri Mar 07, 2008 6:59 am

Hi everyone.
I have been rolling this question around my thoughts and can't seem to come up with the right answer. Not that there is one, per say.

I simply wonder, if I'm the only one? If it's a routine thing like a cold, the flu, I can go to my old friend and doc and I'm cool with that. But the bigger stuff, it seems to shut me down hard.
Several different docs, telling my whole story over and over, and the biggy.....OH MY what meds you take and for What? Hmmmmm." Leaving me to get the chance to educate, that is good, but I'm already having a hard time just being there......Sir or Ma'am.

UGH, the bore and the pain it seems, for me, to have to explain everything to every new doc, all the time. Last year so much basic trust of those fine doctors was enough for me. I'm beyond nervous and guarded at this point.

Again or still I'm a in spot where I need medical attention. That healing just isn't happening after I took that kick to the surgery site, under 3 wks out. Now the nerves are coming back slowly and yup, it's there. :roll:

I do want it fixed, the pain gone. I want to rehab for real, and then go on with life. I'm over this. And I dread it so bad, I just not getting myself there.

Am I the only one that has this thing with doctors, when it's you and your body? Not like we meet them at conventions or social settings, I'm fine there.

I'm just asking and would like to know what you think about yourselves, and give me the great ideas to climb theis fence. I can see through it, tis locked, as now. :D

Hugs to all,
Lynne

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Neco
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Postby Neco » Fri Mar 07, 2008 7:12 am

Not sure what to really say... I guess my narcotic addiction counts as another health issue.. I used to blow the whole idea off for a long time, and justify it all as my RLS, just taking what I need to maintain my comfort level, and to hell with everyone else. But these days I am dealing with it..

I do kind of worry about having more serious health issues though, and how I would get through them if I needed to have surgery or something.. Having to trust people that tell you not to worry, everything is under control, "yes I read your information"... I don't know.. My life is full of experiences where people acted like everything would be fine, and then it wasn't.. One thing was said - another was done.. Even recently I've had to deal with that issue with my doc..

I remember things very important to me with the utmost clarity.. But I constantly have to deal with people down the road, claiming they never said something, or never said something like I claim they did... Sometimes I wonder if I really am imagining things and hearing what I want to hear..

When I had my tooth pulled, I wanted codeine, because I KNEW my methadone alone was not going to control the pain, and my doc had already been refilling me early as it was to hold me over until the tooth came out.. I didn't list my methadone on the forms I had to fill out, told the nurses I wasn't taking anything.. But then when the dental guy came in and asked as well, something inside me freaked, like what if he called my doctor and crap and asked (he asked who my physician was, etc).. And I finally sat up and told him all nervous and sweaty that I was on methadone for my RLS.. And I tried to play it down as best I could, saying I just don't like to tell people because they get the wrong idea or something.. I mean here I am taking methadone - and asking for painkillers :roll:

But he was cool, and took my tooth away without an scratch of pain, except for the novacain needles of course.. And gave me what I thought to be a rather generous amount of Tylenol #3..

No idea if thats the kind of experience you were asking about.. Sorry if I just pissed on your question, lol...

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Postby ViewsAskew » Fri Mar 07, 2008 7:36 am

Absolutely.

I didn't have difficulties until the last few years. The explaining is just too much. I'm so mad at my main GP that I won't go see her. She WILL NOT HELP me. Period. So, I drive 60 miles to see my old GP - who is not covered by my insurance - to get RLS meds. After about 20 phone calls to local docs, I still cannot find one who will treat my RLS with the meds I use.

I am behind on every annual test I am supposed to get. I've not followed up on a few minor things. I keep thinking that I'll get that ONE doc who will do it all. I'm so afraid to have to keep changing the insurance, one after another as each doesn't "get" the RLS and the meds that work for me. So, I don't do it.

The last time I did the doctor thing, I went through about ten of them. I only could get through it because it was that....or checking out. I had to find someone to help me as I truly had no life without help. And, I got it. Once there, I just can't convince myself to go through that again. It's like a post in another thread yesterday about how once you go through something and it's truly terrible, you just can't face it again.

I know I'm probably hurting myself. But, I'll very likely be hurting myself to put myself through all of this.

<sighs>
Ann - Take what you need, leave the rest

Managing Your RLS

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lorabell
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Postby lorabell » Fri Mar 07, 2008 8:38 am

Very good question!
Yes, even though all my Dr's are in one clinic, I have put off seing some of the others, just because of the endless questions.
Silly now, cause they are all connected by a new computer system, but just the questions !
Yoy have got my attention on this one. I KNOW I need to call the eye dr. and the dermatologist, and even the nurse prac. for my yearly ( over due by 3 ) check up, and my mammy is long over due.
I am soooooooo glad you brough this up. Ignoring my other health issues is not a good idea. Calling all of them when I get up fri. morning. OH, IT IS Friday morning. LOL
Thanks for the wake up call!
Lorabell
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Always remember, if you cut off your limbs, you'll have phantom rls and nothing to rub .LOL

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Aiken
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Postby Aiken » Fri Mar 07, 2008 9:20 am

Hm, I established a lot of new relationships with doctors over the past year. My main concern is indeed that list of meds they always ask for. Luckily, when I met most of these doctors this past year, I was on the not-too-concerning ultram, so it wasn't a big deal.

However, I didn't see my gastroenterologist until after I switched to methadone. He's a clever, knowledgeable, fun guy, but RLS is pretty far from his specialty and he wasn't too keen on seeing methadone on my chart. It might have been CYA with drug safety, once he saw I was on it, but I did get a lot of warnings and suggested alternatives.

Now that I take both hydrocodone and (a lesser dose of) methadone, I just can't wait to fill out the list for the next doctor. I'm sure I'll get a real lecture this time, especially if it's from someone who's more oldschool.

Other than doctors' concern with meds, RLS doesn't keep me from treating other maladies. I simply can't put up with having something wrong with me. I'm too paranoid. It's worth the hassle to have things checked out or worked on. I just have to be firm and say, "No, these two medications are the right combined treatment for my RLS and TOS, and I'm well-educated on the cautions. Let's move on to the issue of the day, please."
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.

becat
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Postby becat » Fri Mar 07, 2008 6:42 pm

Thank God I'm not the only one.

I honestly can't thank y'all enough for talking about this with me.

I know from the amount of meds I'm taking and the breakthough pain, that I HAVE UNRESOLVED ISSUES, but I can not make myself go it.

Like each of you, I hate that look they give you after they read what you take, that 8) and it's a funny look, with no humor intended.
Not to mention that, but to add the drooling manner in which I would prefer to explain, blah blah blah......"Dude didn't you study any sleep or neuro disorders in college? Hasn't a Pharm guy or gal dropped by to say, thie is for soemthing called RLS?" UGH

This might be something we, at least I need a bit more training in. Because we all know we are not training many doctors.

I have to say I feel better, but I get a sense that overall, after our RLS takes a turn and the meds get into the higher realm, we avoid docs at all cost........even if its not the best idea. Just seems like added stress.

Zach, although my dentist is the only one that does get the RLS thing ( he told me about Mirapex and some of the anithesia (sp?) mixing and problems), he's not the best at his work. :roll: I have to find another one.
I'm thinking that will be a while, lol.

Thank you everyone, I think this is a worthy conversation for sure.

Lynne

lorabell
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Postby lorabell » Fri Mar 07, 2008 7:11 pm

Hi Becat.
No, THANK YOU for bringing this up. :)
I HAVE been avoiding making other appt. but as soon as I get off the computer, I'll be making calls.
Lorabell
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wowobl
Always remember, if you cut off your limbs, you'll have phantom rls and nothing to rub .LOL

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Postby tazzer » Fri Mar 07, 2008 8:13 pm

i am still having stomach pains that no one has picked either gall bladder, poly ovary synd, ulcer, something worse....i finally made the appt to go get a hida scan on gall bladder....lovely more radioactive dye shot into me and someother enzyme to forcibly make my gallbladder do its thing and see what is wrong yay.....

i am so sick of doctor visits just find out what the hell is wrong with me...keep me in one spot till you do...is that too much to ask?????

dee
I feel like a science project!!!

“The syndrome is so common that it should be known to every physician.”
Dr Karl Ekbom, 1945

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Postby Sojourner » Sat Mar 08, 2008 1:43 am

Call me cynical. And maybe it's just age or aging. And, I have vented about this before. But, I am "sick" of 3 minute (or less) doctor visits. I am sick of written reports that do not reflect the visit, contain outright inaccuracies (at best), put me in a bad light, and themselves in a good light. I am sick of them wanting to hear what they want to hear and not what you need them to hear. I am tired of going back for multiple visits for the same thing when if they took the time they could have gotten right the first time. I, by and large, have simply lost faith in the medical profession but not necessarily medicine. I'm sure the adage "Can't live with them, can't live without them" applies. But, yes, I do put off going to see a doc more than I should. Should I tell you why?

M.
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Postby tazzer » Sat Mar 08, 2008 1:49 am

amen brother
I feel like a science project!!!



“The syndrome is so common that it should be known to every physician.”

Dr Karl Ekbom, 1945

becat
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Postby becat » Sat Mar 08, 2008 3:31 am

Mark, that was my story and my story fits Dee's, as well, all last year.

Now my doc (family gp) has known me for 20+ yrs now. He knows I don't whine about the small stuff, I know my body. But all last year, I told them repeatedly, that my problem was a girl thing. And in part due to my tubal a year before. Not one would listen.

At one point he, himself, during an exam noticed and told me "theres a fever in that spot." DUH, I told you that 2 visits ago. He told me that something was really wrong and to not let this go until it got resolved. Ok, so I didn't, but ended up having to go to 3-4 different docs, with ? how many different visits to each of them, testing (uuuffffaaaa), and then a surgeon gone nuts. Not one of those docs remembered how "serious" this all was and ignored test results, ordering test, or even sharing with the doc that was suppose to be keeping up on it all. I figured that they all owed me some big bucks for doing their jobs and getting my checks on top of that. No way.

That one visit with my GP after 4 1/2 months of pain, tests, and different docs he sent me to......I go to the appt. where he is going to tell me the overall results and we would decide where to go from there......after 10 minutes of just nothingless talking, I realized he had no clue what this appt was for. I asked about the test results?????????? and then it hit me, he was reading what he had gotten a month prior, for the first time, right in front of me. I got upset and he told me we needed to deal with my depression. :evil: Fight On DUDE!

Docs do not help themselves in anyway with most people, where's our trust supose to lie? Just like you said, they don't really listen.

Most people do not understand that docs are taught to listen for Key Phrases, to diagnose someone. I so dislike that, because it means they aren't listening to me.
I had teenagers and know when the eyes go dead and they aren't listening anymore. So I test them and throw in a "then a lion came into the room........" just to see if they are listening. LOL

Why Mark, tell me why? :D and Ditto Ditto Ditto to everyone here.
This really may be an issue for the Foundation to help us as a community to address. Maybe we can make a difference for everyone.

:roll: I know I'm a dreamer.

Lynne

And your right I should, maybe we all should get copies of our records for ourselves. Make our own notes.

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Neco
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Postby Neco » Sat Mar 08, 2008 6:21 am

I remember I was feeling the same way about medicine before I got diagnosed with my RLS.. I rarely went to the doctor after I refused to take Ritalin any more sometimes between 14 and 15. I'd had enough of therapists and psychologists and other so called doctors telling me I had emotional problems.. I got sick of it all, really started acting out worse, and if anything I ended up developing worse emotional problems until I finally just secluded myself in my bedroom, stopped going to school, just sat in front of the PC all day/night..

Fast forward about 5 years, we've moved to Wisconsin, I've had an odd job or two at the Printer in town (Perry Judds, gone now tho) tried workin with my dad while he was testing out working estate sales and transporting the stuff people buy to their homes.. I couldn't even function doing that.. invariably end up wide awake a given night for no reason.. the story of my life since childhood.. crapped out literally falling alseep on my feet trying to work through stuff, feeling like crap both from lack of sleep and then feeling guilty because I am letting my dad down.. even tho he never complained that much... I think he understood at least a LITTLE teeny bit, that I had problems.

My doctor said he practically read it all on my face the first time he saw me, and could see the immediate improvement the next time I saw him (1 or 2 weeks later I think??).. I was clean shaving, smiling, conversing more like a person.. I could feel it then too, and was glad to have the Zoloft for the time being...

It's been an up and down roller coaster ride ever since, but I have learned to have a lot of continued faith in medicine itself and be more scrupulous of the people practicing medicine instead.. I know all about visits cut short (but he never throws me out if I say hold up a minute I got a question or two, or something important to talk about) and of course things being said and then selectively remembered etc...


The joke of a social worker at Jefferson County health services was such a waste of time.. HIS partner/girlfriend whatever deals with her IBS ands y z, so I should stop whining.. it's not THAT bad, she gets along fine.. therefore I should too !blah blah blah..

The psychologist was a joke too.. He's not even even a M.D type doctor that I know of.. just some guy who gets paid to tell the crazies whatever it is he tells them, and write scripts for mind numbing drugs... Has the nerve to say Tramadol (whichi I was on at the time) is NOT a treatment for RLS.. Doesn't have the balls to say it to my face, at the time with me in the room.. just here it through feedback on the session via my shitty social worker.. I flat out told him the guy doesn't know what he's talking about, sorry. The a****** called me a drug seeker, because I had came back to the dump looking for help on where I could get methadone because my doctor at the time didn't was very unsure about giving it to me for lack of experience etc... Yeah I'm a drug seeker.. seeking drugs for RELIEF .. worthless know it all undereducated twats


It's a hard place to be now... I have faith in my doctor 97% but the rest of the system can kiss my butt

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Postby Hos » Sat Mar 08, 2008 6:56 am

Yeah, Lynne, you pretty much summed it up with the word, TRUST. Or lack thereof. Some docs are too busy to do the proper research to read your file, sit and listen, and make it feel SAFE for you to open up.

Why would a patient give personal information to someone who doesn't take the time to care? Lacks empathy? Judges the patient? It's appropriate for you, or anyone, to not want to go through that and therefore avoid it if possible although we know we have to go.

It's like going to the DMV. Long wait times, not much compassion, but what choice do we have?

I am blessed with an awesome PCP who takes time to read my chart, takes the time to listen to my questions and asks thoughtful questions. Guess what... I ENJOY going to see him and I am also more likely to open up to him since I feel safe around him.

Stay strong :!:

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Postby lorabell » Sat Mar 08, 2008 3:55 pm

Oh Lynne.!
What a way to start the morning. ! I didn't just LOL I busted up laughing !
" And then a lion cme into the room". My poor Dr's already think I should be committed !
Should I pull this on my pc , ( would you believe I see him April 1rst), will you come visit me in the ward ?
Hugs,
Lorabell
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Always remember, if you cut off your limbs, you'll have phantom rls and nothing to rub .LOL

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Aiken
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Postby Aiken » Sat Mar 08, 2008 11:05 pm

Mark wrote:But, I am "sick" of 3 minute (or less) doctor visits.

I fired my GP last fall over this. Seriously, I was simply DONE with that crap. From now on, no doctor will ever see me twice if he pulls that crap. My new GP spends time actually listening to me, and then spends time filling in the gaps in my knowledge. It's awesome. I should have fired the other guy sooner. He was a nice guy and all, but the overt I-need-to-get-to-the-next-patient-on-the-assembly-line behavior was totally unacceptable.

becat wrote:and then it hit me, he was reading what he had gotten a month prior, for the first time, right in front of me.

That's the worst. When nothing happens unless/until you prompt it, your doctor simply sucks. They are just plain lazy, and for that matter, criminally negligent if there's something really bad in your test results. Again, like the 3 minute visit, I'm NEVER putting up with that crap again.

It's one thing when we go to the doctor because we have green snot and we need an antibiotic. Even crappy doctors are capable of handling that. Usually. It requires about sixty seconds of looking in our noses and writing a prescription, with no prior knowledge or memory of us. For anything that could be life-threatening, though, the real threat to our lives could actually be the crappy doctor in question. I think it's best to make sure we already have well-vetted doctors before that becomes an issue. We don't want to be dealing with a lazy, three-minute doctor when we find a little lump somewhere.

Rrr. It's really amazing how riled up I get about this issue.

Edit: Hos' DMV analogy is bang-on. I will definitely use that one. :)
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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