My RLS Mountain....

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
becat
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My RLS Mountain....

Postby becat » Thu Sep 09, 2004 2:05 am

n/a
Last edited by becat on Mon Dec 28, 2009 1:58 am, edited 2 times in total.

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jan3213
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Location: Illinois

RLS Mountain

Postby jan3213 » Thu Sep 09, 2004 3:54 am

Hi Becat, this is Jan

I'm not surprised you did so much research on your own at the beginning of your journey. You are so much like that! Though I am not a stupid woman, I am a trusting woman, and when I came to the conclusion that I might have RLS, I trusted my physician when he prescribed medication. I wish I had been more like you. I have had few side effects, and have been lucky that my specialist has listened to me. But, I haven't really had a "take charge" attitude like you. After becoming a member of this forum, however, I'm seeing many things in a different light. You see, I haven't really known anyone personally with RLS. I haven't been able to share experiences or discuss different types of therapies (for want of a better word). I've been kind of on an island, and at the mercy of my physician, although I could have been like you and could have done my OWN research. I, too, am beginning to wonder what the effects of all this medication I'm on is having on my own body. Is it really helping? Many times we take medication blindly, popping one pill after another because our doctors say it will help. Does it really? I, like you, haven't had a good night's sleep in years. I went through a period of real sleep deprivation this past spring, and even had hallucinations. I don't want THAT again. My sleep study indicated it was stress. The sleep tech said something entirely different (I did not request to see the results--she insisted on showing me). I'm getting tired of this lifestyle and I'm getting mad!!! I told you, recently, Becat, that I haven't had a dream in a long time. I used to dream all the time. Something's not right. And, people, I do see my doctor fairly regularly. Soooo, I'm getting mad and I'm not going to take it any more (to quote a movie). If this forum doesn't do anything else for me (besides meeting great new friends), it's making me realize that I can do something about my own destiny and my own health!!! Have a good night Becat!!!

Jan
No one is alone who had friends.

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

Day three

Postby becat » Thu Sep 09, 2004 10:05 pm

n/a
Last edited by becat on Mon Dec 28, 2009 2:00 am, edited 1 time in total.

Elfrieda
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Joined: Fri Aug 27, 2004 8:41 pm
Location: dc

thanks for your story

Postby Elfrieda » Fri Sep 10, 2004 2:25 am

Becat. your story is so heartening. Just a little over a week ago, I decided to "fire" my neurologist. I have been kind of medicating myself this week until I can see my rheumatologist tomorrow. You have given me the courage (I hope) to tell him honestly what I think.

Elfrieda

becat
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Joined: Thu Apr 29, 2004 11:41 pm

Thanks to you

Postby becat » Fri Sep 10, 2004 2:43 am

n/a
Last edited by becat on Mon Dec 28, 2009 2:01 am, edited 1 time in total.

Sara
Posts: 493
Joined: Wed Sep 01, 2004 2:40 pm

The gibberish on the chart...

Postby Sara » Fri Sep 10, 2004 3:16 am

Hi, Becat. Ironic that you brought this up.I am also a little leary about what might be written on a chart with a doctor I'm about to change.

I think that the doctor (who used to trust my gut feelings a lot and encourage me to share those and make suggestions) has suddenly decided that my gut is not telling me true, and I worry that some footnote in my files passed along might put me in the same position with a new doctor. :( Perhaps even without my knowledge. You know what I mean? They'll see this and have a pre-conceived idea about what type of patient I am, and I'll be trudging uphill from the get-go.

What sort of a letter of referral are you talking about??

Sara

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jan3213
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Location: Illinois

Unfavorable info on charts

Postby jan3213 » Fri Sep 10, 2004 3:27 am

Hi, it's Jan

Interesting that you bring this up. I had sort of a "run in" with a doctor (female) last spring. I should have had a heads up in the first place. She was extremely friendly at first, even to the point of hugging me (which I thought was a tad inappropriate). I only went to see her three times in total. The next time, she acted like she didn't have a second to spare to see me, and the third time, was after a sleep study, and she was mad at ME because the sleep tech showed me the results of the sleep study. She was fired from the doctor's group, but I was kind of afraid of what she put in my chart. I now have a great doctor, but the first woman said some really awful things to me (and I'm sure to other people--hence the firing), and you do wonder what doctors like that put on your charts, don't you? I have a very good relationship with my new doc and have confided in her what happened. I don't think my "reputation" preceded me, but it could have. How could I have gotten a referral letter out of that mess? Just wondering.

Jan
No one is alone who had friends.

Elfrieda
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Joined: Fri Aug 27, 2004 8:41 pm
Location: dc

paranoia runs rampant

Postby Elfrieda » Fri Sep 10, 2004 3:42 am

I, too, have wondered what doctors write about me and pass on to new doctors who always ask for records. Maybe if we polled everyone on this board we'd hear more concerns about what those mysterieous markings are in our medical records. No matter, in many ways we are dependent on the docs although they sometimes make us doubt ourselves. That's not good, we have enough doubt of our feelings and conditions.

For years with the fibromyalgia that I have and all the weird things that go with it, I've often wondered "Is this a true perception, or am I just imagining something." I don't know how I could imagine pain so bad that I have trouble standing at times or other thimes when I have so much fatigue that I have trouble undressing. But there you have it--there's nothing that shows up in a blood test or on an xray--just my perceptions.

However, we know our bodies, and we should learn to trust our feelings.

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jan3213
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Location: Illinois

Fibromyalgia

Postby jan3213 » Fri Sep 10, 2004 3:52 am

Elfrieda, this is Jan

I hate to impose, but could you please explain what your symptoms are with fibro? I'm wondering if, perhaps, I might have that, as well as RLS.

Thanks,

Jan
No one is alone who had friends.

Sara
Posts: 493
Joined: Wed Sep 01, 2004 2:40 pm

Knowing our bodies

Postby Sara » Fri Sep 10, 2004 3:55 am

Elfrieda--

I was just talking to my auntie about this on the phone, about the types of conditions some doctors seem to really think are "imaginary", like fibromyalgia, RLS, CFS, Gulf War Syndrome, etc.

Since she and I both know people with each of these, and others who are obviously suffering, but from conditions without an easy blood test or other "solid" indicator, as you mentioned, it's of GREAT concern when SOME doctors do NOT value or trust our knowledge of our own bodies.

I think in the long run, the negative and skeptical reactions also tend to cause us to second-guess our own feelings. And that really worries me. As Becat says, in one sense one doesn't presume to know more than an MD... but about our OWN bodies, I think we have a much better PERSPECTIVE at least. A skilled and caring doctor, IMO, uses that perspective and then furnishes us with the knowledge and guidance to interpret it objectively.

Take good care, everybody.
Sara

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

ufffaaaa i know that

Postby becat » Fri Sep 10, 2004 4:17 am

n/a
Last edited by becat on Mon Dec 28, 2009 2:01 am, edited 1 time in total.

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jan3213
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Location: Illinois

Mothers

Postby jan3213 » Fri Sep 10, 2004 7:55 am

Becat this is Jan

I've been thinking about how to respond to your post--I do know I need to respond because it sounds so familiar. I know that your mother loves you. And, believe me, I'm not trying to make excuses for her. Sometimes, the people we love the most, can hurt us the most. I know you--you rarely complain, but you've been in so much pain. You've just recently been vocal about it. I'm so sorry you had to be hurt twice--once by your own body and once by your mother. I know how it is--people just DO NOT understand and it is so frustrating! Even our own families!! One of the biggest benefits I've found about this forum is not finding out about therapies or medicines, but finding friends--people who understand and care. I found you, didn't I? Please take care of yourself--cry when you have to. Someone once told me that tears cleanse the soul and I believe that. You often feel better after a good old crying session. But, remember, you've got friends here, good friends, who care about YOU and will be there for you.

Much love,

Jan

P.S. I remember that exchange between you and Elfrieda. BTW, someone told me not long ago that I didn't have enough "faith", that was why I was going through some things. Sometimes people are ignorant, and please don't take that to mean that your mother is stupid, Lynne. She's a smart woman, but she just doesn't know everything. Who does?
No one is alone who had friends.

jumpyowl
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Joined: Sat Mar 27, 2004 2:59 pm
Location: Yantis, TX
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Hi, Becat!

Postby jumpyowl » Fri Sep 10, 2004 11:13 am

Now that I got over the heart-wrenching effect of your story I can try to analyze your situation, which is difficult due to the emotional issues involved.

Many doctors have been brainwashed by the War on Drug attitude which has become a political issue rather than a medical one. You also have a strong conviction against pain killers which you are also fighting. Instinctively your attitude also affects the attitude of the care takers which then bounces back and forth between these two sides.

It is a bit like one will have a greater chance to be bitten by a hostile but uncertain dog if one is afraid of it than otherwise. (Sorry for the down-to-earth and far from perfect analogy).

The South Californians have this to say about methadone:

Dolophine (Methadone)

This drug is actually very effective in RLS. Most physicians will not prescribe Methadone due to its association with drug dependency treatment. Many patients may get relief from this drug when other ones in this class have failed.
It should be reserved for when patients fail the other narcotic drugs.

Methadone comes in 5 mg and 10 mg tablets. The dosage range is from 5 mg to 30 mg per day. When given for pain relief, the drug lasts 3-4 hours. In RLS, many patients report much more prolonged duration of effect, often up to 6-12 hours.


The emphasis is mine. To tell you the truth, I would have tried Methadone when it was offered, but again I like to experiment. Of course, they also say that this should be tried if the patients fail the other narcotics and you have not failed them (see percodane).

It also occurred to me, have you or the doctor suggested Ultram? For some reason this medication does not trigger the violent antipathy in care takers. The best is probably a pain doctor. As we have those now since 1990.

Of course, Percodane is fine especially since it works for you. I am just offering alternatives that may be easier for you to get.

Just a brief comment on your mother. We all have strong, life-long convictions which we will not abandon even with someone we care about. I should have written ESPECIALLY with someone we care about. Perhaps this will make it easier to bear?

I am on your side Becat! even if I do not sound like it. :)
Jumpy Owl

Sole
Posts: 212
Joined: Sat Jul 03, 2004 9:25 pm
Location: Oregon

Re: The gibberish on the chart...

Postby Sole » Fri Sep 10, 2004 7:29 pm

Sara wrote:Hi, Becat. Ironic that you brought this up.I am also a little leary about what might be written on a chart with a doctor I'm about to change.

I think that the doctor (who used to trust my gut feelings a lot and encourage me to share those and make suggestions) has suddenly decided that my gut is not telling me true, and I worry that some footnote in my files passed along might put me in the same position with a new doctor. :( Perhaps even without my knowledge. You know what I mean? They'll see this and have a pre-conceived idea about what type of patient I am, and I'll be trudging uphill from the get-go.

What sort of a letter of referral are you talking about??

Sara


I've been in this situation before also. Worried about what is in my file. What I have done in the past, is reinvent myself. What I mean by that is I go to the new doctor ad pretend like I've never been diagnosed. No previous doctor...nothing. I know it's not very honest but it's better than having the new doctor prejudge you based on someone else's erroneous evaluations of you. I stay in charge of who knows what about me ALL OF THE TIME. My two cents.
Sole

"If you ever drop your keys into a river of molten lava, let'em go, because, man, they're gone."

Sole
Posts: 212
Joined: Sat Jul 03, 2004 9:25 pm
Location: Oregon

Postby Sole » Fri Sep 10, 2004 7:41 pm

Becat,

I can't tell you how happy I am that you are finding some relief. I know it's been a mental and emotional rollercoaster for you, trying to decide whether or not to give the narcotics another chance. The Percodan is doing what is made to do and that's wonderful. I wish someone would create a list of doctors who are not afraid of the DEA and are willing to prescribe medications that are out there. They're legal medications for pity's sake!! Don't get me started. If your gatekeeper refuses to continue the percodan, I'd opt for a hit off the pipe every night. Screw em. :-) But I'm just gonna pray that he does his job and continues to prescribe what is working. You're doing a great job at keeping up with life. I'm proud of you.
Sole



"If you ever drop your keys into a river of molten lava, let'em go, because, man, they're gone."


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