It IS about Quality of Life

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.
Laura W
Posts: 9
Joined: Sat Oct 18, 2014 4:49 am

It IS about Quality of Life

Postby Laura W » Wed Oct 22, 2014 6:20 pm

This is my first post on this wonderful message board.

I was just reading about a lady who was struggling against augmentation and someone responded to her with encouragement and said finding a doctor who understands the need for pain medication and what quality of life they can provide.

That just "ding"ed in my head and I realized how wonderful it has been for me to be able to have relief and such increased quality of life since enduring the laws of prescribing and monthly visits to the pain clinic and finally receiving the dosage increase I have needed.

It has been a very long road to travel. A journey I have to continue by doing the exercises, etc. that give me relief in my back, which in turn has made it possible for me to endure the four- to seven- hours of WED attacks during which I must climb steps to get relief.
Which in turn causes intense pain in my knees and my hips.
Just got a hospital bed to help ease my joints during sleep.
I am just a "special case" and have way too many quirks-- it takes so much for me to find a comfortable position.
Oh, whiney brat Laura. That's what I seem to be to everyone around. I try to keep my mouth from complaining, but when I'm hurting, I know I am the only one who can effect the changes to be more comfortable.
Pain medication may save all my relationships!

So that's my first post on this wonderful board.
God bless everyone who finds rls.org

Rustsmith
Moderator
Posts: 3581
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: It IS about Quality of Life

Postby Rustsmith » Wed Oct 22, 2014 6:31 pm

Laura, congratulations on your first post. You seem incredibly positive considering the problems that you face. I am glad to hear that you appear to be nearing the point where you have it all under control. I really hope that you remain that way for a very long time.

As for " whiney brat Laura", all of us come here to occasionally vent or problems to others who understand. So please do not hesitate to do that whenever you need.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

ViewsAskew
Moderator
Posts: 15404
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: It IS about Quality of Life

Postby ViewsAskew » Wed Oct 22, 2014 8:27 pm

I sort of like being a whiny brat at times. I spend most of my time being "Adequate Ann" - someone who always finishes what she starts, doesn't whine because it's unseemly, eats her vegetables even if they taste icky that day, and so on.

We all need a doctor who "gets" it. Not enough of them do! Sounds like you've found what you need, finally, at the pain clinic. Hope that relationship lasts and lasts.
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.

sleepdancer2
Posts: 195
Joined: Sun Jun 29, 2014 7:46 am

Re: It IS about Quality of Life

Postby sleepdancer2 » Thu Oct 23, 2014 12:32 am

In this place I feel my struggles are understood. We may not all have the exact same manifestations of our RLS/WED but we all understand the concept of misery. Glad you're getting some help to mitigate the misery.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

Laura W
Posts: 9
Joined: Sat Oct 18, 2014 4:49 am

Re: It IS about Quality of Life

Postby Laura W » Thu Feb 07, 2019 8:06 am

hello fellow are Lester's

Ha ha ha voice recognition doesn't work very well does it?

Fellow restless leg syndrome ers!

It has been quite a while since I visited because I've been so stable once I found dr. Arthur Walters! He is so kind, and is very experienced.

I have been in pain management for a good long while. On my next visit I will meet with the physician who does the prescribing, who is insisting that I stop taking diazepam along with Roxicodone.

I know the danger of these two drugs together. Every doctor I see always makes a point to caution me. I am very very careful, keep a close Journal of every till I take and the time.

I was put on valium or diazepam following horrible Dreadful extreme scoliosis corrective surgery. I noticed immediately it made a huge difference in the amount of episodes I had and in particular, the duration.

Additionally I experienced a situation where in my husband had to cancel a business trip because I was overcome with extreme foreboding as the time Drew closer for him to depart for 3 days.

The very next day I could call my doctor's office she saw me first thing in the morning and could see I was obviously in distress. I have stopped taking as much diazepam as I'm prescribed because the nurse practitioner at the pain clinic told me they were going to start titrating me down. I was very concerned of course that they were going to terminate my relationship with them and did cut back considerably but slowly.

My primary physician said you do not need to be afraid to take the Valium at the dose that it is prescribed. I told her I did not want to get her in trouble and I did not want to get me in trouble. She insisted everything would be fine. That I am not gobbling them up or taking even as much as prescribed and the never have.

The laws in my state have changed so that it is apparently becoming impossible to get both of these drugs prescribed no matter the dosage. I'm not sure on that however what I was told at my last pain clinic was that they were going to take me off the Valium completely or I was going to be dropped from the program.

I have never failed any of my urine test over the course of four plus years. I've been an absolute compliance with the number of pain medicine tablets given to me, and I can only assume that someone's feathers have gotten ruffled because when I could not get the amount of Valium I had previously gotten from my surgeon, which immediately had made a huge difference in my RLS, I went to my primary care physician to increase to what my surgeon had given me. Which is one tablet more than I was able to get at pain management. I suppose it looked as though I was Doctor shopping. Maybe I'm being paranoid but in my state and in my situation here even though I'm a nice girl from a nice family and I've never broken the law or anything, the assumption is that I'm trying to work the system.

Anyway, because I really must have pain medication since I have virtually no ability to do any activities meaning, I'm reduced by probably 90% what I want was able to do before my scoliosis surgery even though I have always done my exercises. Always. I have a strong incentive for self-care!

Kind of lost my train of thought as I ran down the rabbit Trail. Anyway I will be meeting with the pain management doctor and we'll just have to see what he says. They Happy by the proverbial basketball, and I'm not an athletic person. Let the reader understand.

I have seen it posted as I've been back on this forum that diazepam does not help with RLS. Well tell my body that if you wouldn't mind!

I did mention to my nurse practitioner that doctor Walters had mentioned if the Roxicodone begins to stop working there are alternatives such as methadone. That is strictly for the Restless Leg. What I have looked up on methadone is that it causes dry mouth and that it does not provide pain relief as effectively as Roxicodone. I have no enamel left on my teeth from years of grinding so dry mouth is an invitation to a very special dental appointment to have all of my teeth removed in to get dentures. I like my teeth, I'm excellent at taking care of them, whenever I have gone in for cleaning they always say there is no tartar buildup here so I never get scratched and scraped.

I had commented at pain management appointments that I'm really wish the lawmakers in my state would have to pay $45 copayment once a month, provide a urine sample, be made to feel as though I am guilty and engaged in criminal activity, all for the sake of getting a $10 prescription.

Oh by the way, since I have intentionally cutback very gradually on the amount of Diazepam I take, which was already next to none but enough to help me with my anxiety since I can't take as much antidepressant as I really need because of the RLS on and on and on yada yada yada, I have been truly miserable this month without regular sleep at night and also during the day I have attacks of restless leg.

I really need more antidepressant because I'm on an interferon injection to slow the progression of another chronic autoimmune disease. The side effects of this medication is spiraling depression. I'm just such a special case aren't I!?

So when I see this doctor at pain management and he pulls up my state monitoring program which they are interpreting as me taking three times as much diazepam as I am even though my position checked the monitoring program herself and said there is no problem with it that the doctors at pain management are misreading it....

Well maybe you get the picture or at least a partial picture serious frustration. And because of the spiraling depression I sometimes dissolve into tears for no reason which makes me look like a crazy person. So no one is going to listen to me once that starts happening.

Thankfully, my husband is going to go back with me to speak with the doctor if they will allow it. There are so many locked doors and I understand that. Totally. But I'm not a lawbreaker and I'm not a risk nor is my husband although he is a strong man oh, he's a nice man from a nice family as well.

Of course this is pure conjecture but they may be suspicious because I've changed locations of the pain management where I attend although it's the same company. The first location did not even have automatic doors to help me get in and I had to wait for someone to open the door because I use a walker. So the second location I found out about and it was just the difference between night and day. It's much closer to where we live it only takes us 5 minutes to get there where as the other place takes us half an hour. But I was told the last time I was at the nicer location that they were cutting back on their hours they were only going to be open early in the mornings. It seems to me, having worked in the public arena for many years, businesses have ways of controlling their customer flow. It's very effective to cut back on the hours and make all of the appointment super early in the morning to make it as inconvenient as possible. I have to do exercises before I can do anything so if I'm up all night with restless leg and finally collapse like at 5 a.m. it's so hard to wake up and do exercises and self-care and get dressed and Lurch out to the car to get there for an early morning appointment. Oh shoot there's that whining woman again! Well that's who I am right now.

When I'm really hoping to find out from someone on this forum is if you are on methadone and is it effective with pain relief? Are you able to get it at the pharmacy and self-administer at your home or do you have to go to a facility and get it daily? The way my nurse practitioners eyes lit up when I mention methadone made me think that they're strapped for cash and that if I have to go in every day to get my dose of methadone I'll have to pay even more.

Even the word methadone makes people think that you're a drug addict.

I read an article written by my pharmacist and published in my local newspaper about the difference between addiction and dependence. This was long before I ever needed pain medication but it really stuck with me and I'm glad for it because people assume that that I'm an addict when I'm actually only dependent on the relief I need. That's more self-care there as I remind myself each day that I'm not able to work and I'm not able to do 90% of what I once was able to do but I still have a great deal of value as a human being.

To whoever has toughed it out and read the whole post I thank you from the bottom of my heart. As my sister always says, Laura with you it's not just one thing it's 10 things! I have RLS I have MS and I have debilitating back pain. But I'm not dead yet and I don't want to be, I just want to be understood and treated like the nice girl from the nice family that I am.

ViewsAskew
Moderator
Posts: 15404
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: It IS about Quality of Life

Postby ViewsAskew » Thu Feb 07, 2019 8:31 am

Your last sentence says SO much. Isn't that what most of us want ? To be seen for who we actually are?

Well, at least HERE you are!

I use methadone. I don't think it is great for pain. I have fibro, RLS, and a bunch of tendon issues - hips, legs, arms all have chronic tendonitis issues. I currently have piriformis syndrome as well. Together, I hurt quite a bit most of the time - not as much as you I am sure, but enough that I am not a happy woman when it's all constantly throbbing, pulsing, or whatever. I do feel less pain when I take the methadone, but not as much as I'd like. But, when I add an NSAID with it, it works pretty darn well. I can be close to pain free for awhile.

Hopefully others will be able to add more about it.
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.

Laura W
Posts: 9
Joined: Sat Oct 18, 2014 4:49 am

Re: It IS about Quality of Life

Postby Laura W » Thu Feb 07, 2019 11:50 am

Oh Ann,
I managed to get some sleep and then I thought I would check to see if anyone would have soldiered hrough all of my stuff.
Isn't it just the picture of how desperate folks can be, awake in the middle of the night with RLS, and willing to read things like what I waxed poetic on and on and on and on !?!
I see that you are a moderator. Bless your heart and your eyes and your little typing fingers...
Guess what, I did get a touch of sleep but now I've got a restless leg ho ho ho.
When I was diagnosed with MS and trying to bring in all of that information online, I read an article about the frustration of people thinking that they understood what you were going through. I think the topic was Ms fatigue and how it's very different from just being fatigued. So the end of the article said you don't get MS unless you get MS.
That is what is so valuable about this forum. When I was struggling to understand and find an answer to why exactly I had just spent 13 and 3/4 hours going up and down the stairs , but hh. That's quite a stretch isn't it?
Thankfully that only happened once. I think the commercial for one of the more well-known medications gave me a clue and that is how I was able to track this forum down. And that as they say it's the rest of the story. As I studied I was able to piece together what I needed to do as I found a primary care physician to replace the three who had either retired or moved away. A girl could get the feeling like she needed to wear more deodorant you know what I'm saying!
So, soldier Ann, I do thank you so much for hearing what I was saying and giving me information about your experience with methadone. You popgentle and careful answer had no words of offense, giving me validation all the way. We need that because as Eleanor Roosevelt is cited as saying, be nice to everyone you meet because everyone is having a bad day. That is a total paraphrase, but how very true it is.
It takes so little to walk in another man's shoes. Hey, we're walking already anyway, hahaha!

Rustsmith
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Location: Pueblo, Colorado

Re: It IS about Quality of Life

Postby Rustsmith » Thu Feb 07, 2019 3:43 pm

Laura, as I read your first post, I guessed MS when you said interferon. My wife has secondary progressive MS, which does not currently have any treatments, so please be glad for what you have right now.

As for methadone, I was on it for 2.5 years until I had to switch to Tramadol ER due to side effects. While I was on methadone, I had hand surgery. The surgeon prescribed oxycodone because he said that the methadone would not be strong enough for the pain. Well, I never took one of the oxy pills because the methadone worked fine for my hand.

You mentioned issues with depression. That is something that many of us struggle with, probably as a side effect of poor sleep. You might ask to try Tramadol ER because it works not only as an opioid, but also has properties of an anti-depressant. It is also not a Sch II med, so the bureaucracy and red tape are less. However, the doctor at the pain clinic may not be familiar with that side of Tramadol. I mentioned this to my neurologist recently and she looked at me kind of funny and said "well it isn't usually used for that". My pych nurse was familiar with that side of it, so it probably depends on the health care person's viewpoint. My experience (including those of my wife) has been that doctor's only think about things within their own specialty. We sometimes have to force them to look outside of their own personal box to get them to learn something. However, that said, you also have to be VERY careful telling a doctor that you learned something on the Internet. That will often get you summarily dismissed. It would probably be better to say that you learned something from the RLS Foundation and leave it at that when talking with the doctor.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

stjohnh
Posts: 662
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: It IS about Quality of Life

Postby stjohnh » Thu Feb 07, 2019 4:23 pm

Rustsmith wrote:... My experience (including those of my wife) has been that doctor's only think about things within their own specialty. We sometimes have to force them to look outside of their own personal box to get them to learn something. However, that said, you also have to be VERY careful telling a doctor that you learned something on the Internet. That will often get you summarily dismissed. It would probably be better to say that you learned something from the RLS Foundation and leave it at that when talking with the doctor.


I think Steve makes some good points about trying to educate your doctor. I think it is better to take a printed copy of information from a reputable source (RLS Foundation materials, copies of pages from Dr. B's Clinicians book (https://www.amazon.com/Clinicians-Manua ... inical+RLS), articles by researchers, etc, with a few appropriate sections highlighted. Doctors mostly won't spend time researching what an individual "found on the internet." If a doctor can absorb it in 30 seconds, from a reputable source, you have a much better chance of having it seriously considered.

To get my IV Iron infusions, I took a copy of the consensus paper on Iron treatment from the International Restless Legs Study Group to my appointment. I highlighted only the sections clarifying that I fit the requirements, and the section on how to administer the Injectafer (Iron). The hematologist started off by saying "I've never heard of a patient having RLS if the ferritin was over 90." LOL. Anyway, he looked at the materials I gave him and I got my IV Iron infusions.
Blessings,
Holland

Laura W
Posts: 9
Joined: Sat Oct 18, 2014 4:49 am

Re: It IS about Quality of Life

Postby Laura W » Sat Feb 09, 2019 12:02 pm

Many thanks to you all.
I do definitely make it a habit never to mention internet to anyone with whom I'm hoping to have an intelligent conversation. What a vast wasteland of useless information all stirred up together with really good stuff!
Steve I will be looking into tramadol with my restless leg doctor.
My sympathies to you Steve and to your wife regarding her Ms diagnosis and situation. It is a beast, an invisible disease that the general public has little understanding of beyond someone they may have known in the past who was in remission and was really not bad off. I trust that you are plugged into support groups for MS. I've read recently in the national magazine that when the interferon drugs were first being tested anyone who was symptomatic of MS was claiming to be relaxing remitting so that they could be admitted into the study. I don't remember exactly when but once it was proven that it was effective they did stop the study and released it for the general public. Hence although it's not known if it helps all the forms, it just might assist.
I feel sleepy getting to overtake me thankfully. I've had a very long day following a very long night.
Wy prevaricate about the bush? It's been a very long month of sleepless nights and weary days. But as I shared today, I won the trifecta! With three allegedly incurable diseases on my plate?!
Posting does not come intuitive lie to me. I have attempted to post twice before but not before I had a chance to correct. Then it seems my notations disappeared.
I don't like redoing things but I did want to make these comments of thanks to Stephen and Holland

stjohnh
Posts: 662
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: It IS about Quality of Life

Postby stjohnh » Sat Feb 09, 2019 4:06 pm

Laura W wrote: ...Posting does not come intuitive lie to me. I have attempted to post twice before but not before I had a chance to correct. Then it seems my notations disappeared.
I don't like redoing things but I did want to make these comments of thanks to Stephen and Holland


The "disappearing comments" problem may be related to an inactivity setting in the bulletin board software that Steve mentioned in a different thread, he has changed that.

I used to have that problem, but when composing messages, I usually write a paragraph or two, then post it (click the "submit" button) even though I haven't finished it. I then use the edit button (looks like a pencil) on the partially completed message to finish or correct my comments. This seems to work pretty well, though occasionally I end up with a partial message (the edit/pencil button only lasts 30 minutes or so before disappearing).
Blessings,
Holland

Polar Bear
Moderator
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Location: N. Ireland

Re: It IS about Quality of Life

Postby Polar Bear » Sat Feb 09, 2019 6:06 pm

Ah Yes, the disappearing notations..... If I think I'm going to be doing a long-ish post I sometimes type it up as a Word Document and then 'cut and paste' over to the discussion board.
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

Laura W
Posts: 9
Joined: Sat Oct 18, 2014 4:49 am

Re: It IS about Quality of Life

Postby Laura W » Thu Feb 14, 2019 2:22 am

Thank you Betty and Holland for your helpful suggestions and comments! It's just so nice to come to this place and have good communication and skill-building all at once. And, it's free of charge!

Growing up I have to tell you a funny story. My initials are LLL which led to me being called little lazy Laura. It is true, I am not the best housekeeper and I am not super productive like some people oh, but I do have my areas of expertise in which I'm a perfectionist so it always bothered me to have that nickname from my family who loved me I knew. Meaning, I'm glad I knew they loved me!
Nevertheless, I am an adult now and I was speaking with my friend and ask her to come up with a better nickname for the three L's.

LIFE
LONG
LEARNER

I am a happy student now because this does perfectly describe me. I cannot wait to tell my sister my new acronym. I think that's the correct word. This may be a teachable moment I will look that up
Signed,
Life Long Learner

ViewsAskew
Moderator
Posts: 15404
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: It IS about Quality of Life

Postby ViewsAskew » Thu Feb 14, 2019 10:39 am

Laura W wrote: ...I was speaking with my friend and ask her to come up with a better nickname for the three L's.

LIFE
LONG
LEARNER

I am a happy student now because this does perfectly describe me. I cannot wait to tell my sister my new acronym. I think that's the correct word. This may be a teachable moment I will look that up
Signed,
Life Long Learner


YAY!!!! :thumbup: :clap: 8)
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
Moderator
Posts: 7350
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: It IS about Quality of Life

Postby Polar Bear » Thu Feb 14, 2019 4:47 pm

LIFE LONG LEARNER.... love it.
Hmmmm..... I must think about this.
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


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