Augmentation

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.
jan3213
Posts: 1706
Joined: Wed May 26, 2004 8:46 pm
Location: Illinois

Post by jan3213 »

Oh Hazey, thanks, honey. But, you don't whine and moan--- Actually, I think it's healthy to let those feelings out once in awhile. I was just reading your post on positive thinking (and Ann's) and I try to do the same thing. But, sometimes guys---it's not easy. However, and that's a big however, I am blessed far beyond measure. I can still do many, many things many of my friends cannot--because of PN or fibro or RLS.

Thank you for caring so much about me--about everyone! We are all in this boat together--- It's a big boat and we can have lots of friends along. We'll all make it, I'm sure. Just now and then---you know---it's hard not to look back just a little bit and remember not too long ago how much I could do without pain--without "paying for it". But, then, I have learned more and more to live in the moment. But, you might still hear a complaint from me now and then---- sure glad I've got such wonderful friends.

Penguin, praying for you---- I'm going to make a point of praying for all of you every single night...........

Love to you all
Jannie
No one is alone who had friends.

Penguinrocks
Posts: 703
Joined: Thu Mar 17, 2005 6:03 pm
Location: Massachusetts
Contact:

Post by Penguinrocks »

i wanna go on an Easter Egg hunt and find all of you hiding in my yard! :lol: :D :wink:
Beware the Penguin

ViewsAskew
Moderator
Posts: 16571
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

Jannie, my doctor wasn't in on this last visit so I saw his partner (who is his son). He asked how the Methadone was going and I mentioned that some of the people here can't get any opioids at all. He told me something very interesting.

He said that their office has completely stopped prescribing the commonly abused opioids for all new patients, and most existing patients. If someone asks for one of the buzzword opioids that do have street value or are implicated in abuse, they say 'NO." They do this both to prevent giving drugs to those who are addicted, and to prevent the government from paying attention to them!

They still prescribe the alternate ones, though. The ones that aren't so 'hot.' I wonder if some of us might have better luck if we specifically asked for ones that aren't as well-known. Maybe that would help disarm our doctors a little bit. Of course, for some it won't matter at all.

Ann
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.

jan3213
Posts: 1706
Joined: Wed May 26, 2004 8:46 pm
Location: Illinois

Post by jan3213 »

Sounds like a plan, Ann---- Thanks for the information. I apprecite it!!!

Penguin, I wish we could all hunt eggs together. I was going to make a really silly joke and tell you guys not to put all of your eggs in one basket.

HAHAHA

Jannie
No one is alone who had friends.

Jenne1950
Posts: 81
Joined: Fri Feb 10, 2006 6:16 pm
Location: Illinois

Post by Jenne1950 »

Thanks, Ann, for the info re: pain medication. Unfortunately, asking for the buzz word opoids hasn't been my problem! I leave the specifics up to them and describe the amount and type of pain I''m having. Also, that the freaking Ultracet isn't working. I know I should be grateful to have that, but my dentist expects it to work for toothaches, my ortho for bone pain, my pain management doctor for severe back pain, etc. etc. And it was originally prescribed for fibro!

So today I just took nothing. And it being a good day, it worked as well as the Ultracet! :roll:
Jenny

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

Post by becat »

I think we are going at this the wrong way.
Yes, the war on drugs is killing us slowly and painfully. Nope I won't want to have uncle sam in my business every day either.
We Do Know A Doc that stands up to this and I think it is time to get in touch and ask for across the board help if possible.
ANN......Dr. B was just awe inspiring at the conference about this subject.
I'm going to write to him and ask for his help or maybe we can help to carry his message.
It's true, the street vaule of most of what we all take is unreal, but doesn't make much difference to people like us, we just want a life.
Not to mention that if we bought them off the street we could all have them. So sad and sickly so true. That's not us and we shouldn't be shoved into pain clinics to handle this iusse.
Ok gang, lets really think about this. How can we best approach this iusses as a group?
I like the pain contracts for one, it shows intent and commitment to doing it right....but what else are we missing?
Hugs
Lynne

ViewsAskew
Moderator
Posts: 16571
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

Lynne, I hope it is this easy. I am concerned that the "war on drugs" is costing us more than we can pay and preventing us from affecting much change.

This country has adopted an attitude toward drugs that had made it into a HUGE business. By criminalizing it, they both increase the value of the drugs themselves and stigmatize a segment of society. It seems that systemic change must come from here.

I read a post about a woman whose doctor turned her into the police for doctor shopping. She was addicted to benzos, whom her doctors had originally given her for years without problem. When she knew she was addicted and dependent and trying to stop, she tried to use the Ashton method, where you switch to Valium from the benzo you are addicted to and taper using that. She was trying to find a doctor to help her stop, someone who would prescribe the Valium. The doctor she went to somehow had access to her files (I can't remember the circumstances) and he called the police!!!!!!!

This is nuts. This is what we are up against. The DEA comes after doctors who prescribe too many of specific drugs. Jeez!

There are many groups out there fighting this fight. People with cancer and many other very painful conditions cannot get the medication they need even when they are close to death. It seems that joining with them to press for different laws and reform of current laws might be a good place to start.

Of course, just my two cents.

Ann
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.

jan3213
Posts: 1706
Joined: Wed May 26, 2004 8:46 pm
Location: Illinois

Post by jan3213 »

I thought about this last night---couldn't get to my puter because we have guests sleeping in our family room and my office is right off of it. However, wanted you to know that I do not have a regular prescrpition for hydrocodone---never have had. Lynne knows the struggle I've had. The last prescription I had for hydrocodene was for 30 pills, was filled the first of December and I just took the last pill last week. I don't think I have a drug problem (not that anyone here is suggesting I do). I believe, in the time I saw my last neuro, he prescribed two precriptions of hudrocodene for me. That was over a 10 month period of time.

Besides RLS, I have PN which is extremely painful. Mine is progressing nicely (or not so nicely) and it's ridiculous, to me, that--even though I've always had a fairly high pain tolerance--now I have to suffer. I know so many people who are on pain medication regularly. At the conference, we were told that it was important to stay "on top" of your pain. Anyway, that's the way I remember it.

And, telling my doc the level of my pain doesn't help. I would get the standard answer---either "I'm the doc and I know what's right" or "You don't need pain meds! Just handle it..." I think sometimes I need to set up a video camera round the clock so she could see how my life is effected.

Oh, it's a struggle, and I know I'm not alone. Ann, I know you've suffered a lot and I always appreciate your advice. That's why I ask you so many times for your opinion.

I don't know know what the answer is. Lynne, maybe you've got an idea there! Something has to be done. My pain isn't horrible yet, but I know my PN is going to probably get worse, and I don't know how soon. It's scary.

Love to all
Jan
No one is alone who had friends.

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

Post by becat »

We are no more addicts and nor will we have the chance of becoming addicts with these meds.
I'm no more dependent, for the right reasons, than my husband is heart meds.
It's about Quality of Life. Hmmmmmmm
It's true, Ann said it, it's the docs and the damned Uncle Sam thinking they know better how to live our lives.
I understand the fight on street srugs. I wish it went better for the DEA and clean up so many problems for our country.
HOWEVER, with the medical community they need to step up and help people like us deal with this iusse.
Pain is not, nor ever will be a thing I will accept.
Jan I'd tell your docs to jump into your shoes for a week or so. Then I'd smile and tell them to BITE ME.
sorry.
Lynne

jan3213
Posts: 1706
Joined: Wed May 26, 2004 8:46 pm
Location: Illinois

Post by jan3213 »

No need to be sorry, Lynne! I feel the same way--- I still get intimidated, I guess......

It makes me mad as he**!!! And, like I said, scared!! At this rate, what will I be like in a year, six months, three months? Don't mean to sound pessimistic---- It's just a fact.

Love you bunches!
Jan
No one is alone who had friends.

ViewsAskew
Moderator
Posts: 16571
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

To me, it's unethical and criminal to prevent people who are in pain from getting medications they should be able to get. The damn things exist, for heaven's sake, they aren't expensive most of the times, and too much research has proven that they are safe for most people who have pain or RLS.

I'm sure you all know someone like this (or maybe you are one of these people - if so, I'm envious): a friend of mine from college has a doctor that gives her ANYTHING she wants. Coughing, runny nose? Oh, must need antibiotics. Hangnail? Here, have some codeine. Under the weather? Take some Prozac. My other friend and I sometimes talk about how hard we have had to work to get our basic needs met, yet Belinda gets stuff she doesn't need, let alone want!

As soon as I typed it, it sounded right. "Basic needs." This isn't the caveman era. There is no earthly reason to be in pain.

Jan, what are they doing to address the PN? Since they don't know the cause (or is it attributed to fibro?), they can't really address what is causing it (like removing toxins, or getting blood sugar under control, etc.). It I remember correctly, they often use Elavil (something you can't take), anti-seuzure drugs like Neurontin or Tegretol, or capsaicin in a cream form for the pain. There are also therapies using TENS units, biofeedback, acupunture, etc. Which of these routes has your doctor tried? Because of the RLS, some of these may not be available to you, I imagine.

I stand my my earlier statement that living without pain should be an inalienable right. I just wish I knew how to convince everyone else of that.

Ann
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.

Penguinrocks
Posts: 703
Joined: Thu Mar 17, 2005 6:03 pm
Location: Massachusetts
Contact:

Post by Penguinrocks »

just once, I'd like the ghosts of "RLS" present show up and put the nay'sayers in our bodies....just for one day...it would have to be a full day cuz i want them to really feel what its like....

then see what they do to try and help FINALLY....
Beware the Penguin

jan3213
Posts: 1706
Joined: Wed May 26, 2004 8:46 pm
Location: Illinois

Post by jan3213 »

Hi Ann

This is going to be quick---busy morning. But, I wanted to answer your question about "what are they doing to address the PN". Actually, nothing! My former neurologist doesn't believe I have PN, although the rheumatologist I went to in September said I do. Mine is ideopathic--so there can't address a "cause". But, there are drugs like Lyrica and some drugs for the pain. My PCP mentioned Lyrica, but wants me to wait until I see the new neurologist on June 26. The PN is progressing---it's now in my hands, wrists and arms, as well as my feet. I belong to another support group for PN, so I've talked to many people just as we do here. No, I can't take some of the drugs because of my RLS, but a lot of the people in that group also have RLS, so we'll see. I just need to see a doctor who believes I have PN--not someone whose ego is too big to believe another specialist. Sorry...... that was the bad Jan slipping out. lol

Thanks for your comments everyone!! I really appreciate and love all of you! I'll talk more later.

Jan
No one is alone who had friends.

doety

the result

Post by doety »

These docs who won't prescribe what we need have inadvertently created a group of people who break the law, and I'm one. I seem to have enough friends having knee and hip replacements, and various other operations. They never take all their pills, but give the rest to me! I've done it for others, back when I didn't need them. This situation is really too bad; once again we're on our own in trying to figure out what we should do.

ViewsAskew
Moderator
Posts: 16571
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

Someone posted on the Yahoo board asking about getting meds through online pharmacies. Boy, did that stir a hornet's nest! I think a lot of people were worried about cyber cops listening in (or even starting the conversation) so they could arrest all of the wrong-doers. Unfortunately, that is a possibility.

I hope that anyone who needs medication and can't get it can find some way to help reduce their pain, either through donated medicine (which is also a crime), recreational medicine (which is also a crime), or other means (which, if they've thought of it will be a crime). Too bad it's not a crime to allow patients to be miserable and have no peace from real medical conditions.

Ann
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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