Kratom berry compote

[leggo_my_legs]

OK...it sounds better than it was!

I'm trying kratom for the first time tonight. OJ was expired, so I mixed raspberries and blueberries in the hopes it would dissolve, along with a little sour cream for taste. Which is really not compote, but it sounds nice.

So far just a hint of a headache and feeling relaxed. Took it about 15 min ago.

I am loathe to give up a possible good night of Norco to try this uncertain thing, but then again, it could really help me.

Went to new PCP today and got the 'You're on NORCO?!' Agreed to be my doctor after I said he didn't have to prescribe it.

[ViewsAskew]

[Polar Bear]

I'll be really interested to hear how you managed on the kratom. Unfortunately it is illegal with us.

[leggo_my_legs]

I didn't like it. At. All. I got it from SoCal Herb or whatever it's called.

I dissolved 1/2 teaspoon. After about 1/2 hour, I started getting weird pains in my head. At one point, I did feel pretty relaxed from a muscular standpoint.

My issue is primarily PMLS, but when I went to bed about an hour after the kratom, I had some mini RLS-type exacerbation/restlessness in my legs. I do get that sometimes with some meds...it's like the nerves are being put to sleep and getting it out of their system, that's my best guess. It's unpleasant but didn't last long.

I fell asleep. I didn't feel like I was moving about in my sleep, but I slept very lightly and I had a nightmare that my dog was dying of dehydration (the dog was also waking me up in the night as he had diarrhea). But normally I wouldn't dream of him dying because of that.

Today I feel jittery, my stomach hurts, and my head and face hurts, like pressure and brief stabbing pains, and my head feels fuzzy. In short, I really don't feel well this morning and I want to take a norco and go to bed like I should have done last night!

By means of not discouraging anyone else to try it if they think it might help them, I will say that my body does tend to be quite sensitive to medications and substances; I have multiple drug allergies and once got drug-induced hepatitis from flexeril.

This leaves me with the same problem I had before...finding a doc who is willing to work with me on the opioids.

Kratom is a no-go for me but I'm glad it works well for some.

[leggo_my_legs]

The worst part of it all is feeling judged and getting looked at askance when I am just trying to get a decent night's sleep! Something millions of people take for granted every night.

I guess I need to develop a thicker skin. But it just makes me so angry. I feel so silenced and marginalized because I'm afraid if I speak how it feels to be treated like this, some fool is gonna write something inaccurate in my chart and I will be further pigeonholed.

[ViewsAskew]

The worst part of it all is feeling judged and getting looked at askance when I am just trying to get a decent night's sleep! Something millions of people take for granted every night.

I guess I need to develop a thicker skin. But it just makes me so angry. I feel so silenced and marginalized because I'm afraid if I speak how it feels to be treated like this, some fool is gonna write something inaccurate in my chart and I will be further pigeonholed.

So hard to not be angry when it is - essentially - your life that is on the line. Some people would say that is hyperbolic, but I do not think it is.

[leggo_my_legs]

Exactly, Ann.

[Stainless]

I tried Kratom in brownies. I used a much higher dose than 1/2 teaspoon, choked down the brownies for a week but could not feel any effects. Just yesterday my wife pulled out the other half of what I bought more than a year ago and asked me what to do with it. I'm glad some get relief using it but not what I needed.

[yawny]

The worst part of it all is feeling judged and getting looked at askance when I am just trying to get a decent night's sleep! Something millions of people take for granted every night.

Leggo, I may have missed this but have you considered going to a Quality Care Center? You deserve to be treated with respect and empathy. Very frustrating.

[badnights]

The worst part of it all is feeling judged and getting looked at askance when I am just trying to get a decent night's sleep! Something millions of people take for granted every night.

Two hard truths there. Each one hits me like a hammer-blow. No matter how old it gets, I can't relax about these things, especially the first one. I simply can't get used to it.

I think that doctors - being people - are just like the ignorant people I've encountered who ultimately made me decide to never reveal to anyone, no matter how reasonable they seem, that I am taking opioids. People are susceptible to the media, even wise and skeptical people, even people who should make it their business to find out the truth. If they don't know there is something to be discovered, they never look.

But how can we make them look? I suck at this. I have no stock words to defend my use of this life-saving medication. Nor to illustrate the damage done by extreme chronic sleep loss. It seems so simple, I don't understand why people don't get it when I say "I have a movement disorder that's circadian. It happens at night and prevents me from sleeping." Can't they imagine what happens to a human body when it can't sleep? But why would anyone make the effort to imagine such a thing? And lots of people say "I almost never sleep" when actually they sleep much more than we do, so the complaint has become meaningless. How do we distinguish ourselves from those people?

I do have a way I've used to great effect - but not on doctors! I would tell people there is only one disease known to mankind that causes greater sleep loss than Willis Ekbom/RLS. They inevitably say "what's that?" And I say "fatal familial insomnia. People who have it stop sleeping, and they die. Sleeping pills don't work on it. Nothing works, they die from not sleeping."
'

I used a much higher dose than 1/2 teaspoon, choked down the brownies for a week but could not feel any effects.

Me too. A faint feeling of relaxation, perhaps. I might need a massive dose for it to have any effect. There is no need for me to go that route as long as I have a doctor willing to prescribe opioids.

[leggo_my_legs]

Thanks everyone. Badnights, your reply is so articulate.

Yawny, I've been wanting to see Dr. B or quality care center. It's like I'm too overwhelmed/sick/exhausted to be a good advocate for myself and arrange that right now. I need to. My job is ending at the end of the month so I can make that a goal with the extra time to set up an appt.

I am still recovering from my reactive airway thing and all of that drama. Just exhausted. I got a different inhaler that's helping slowly.

I'm afraid of being judged for going elsewhere by my sleep medicine doctor, that's part of what's holding me back too.

I was thinking before I logged in tonight how grateful I am for all of you and how wonderful you are. It means so much to be understood.

[leggo_my_legs]

Badnights, I wish I would have put it back on the MD by saying, do you have a concern about that? Instead of trying to justify myself, which never quite passes that index of suspicion in their eyes.

How is it that the addicts never back down and always end up getting what they want, while the rest of us feel bad and back down.

And why don't the MDs have better training in recognizing addicts vs pain patients?! I work in mental health...it's not that hard!

[badnights]

In 40 years, people are going to look back on the opioid paranoia in wonder and amazement at its extremities. People will say How. Could they be. So. Stupid.
Too bad I'll be dead by then. Oh well.

[ViewsAskew]

Badnights, I wish I would have put it back on the MD by saying, do you have a concern about that? Instead of trying to justify myself, which never quite passes that index of suspicion in their eyes.

How is it that the addicts never back down and always end up getting what they want, while the rest of us feel bad and back down.

And why don't the MDs have better training in recognizing addicts vs pain patients?! I work in mental health...it's not that hard!

My BFF has lupus, Sjogren's and Raynaud's. Hubby is celiac and occasionally has alopecia. None of us EVER get offered ANYTHING from our doctors.

A friend from college, who lives in Peoria, IL, gets antibiotics whenever she asks, pain pills on request, etc.

Where is the middle ground???????

[pinkynose]

Do you need to tell your sleep medicine doctor that you're going somewhere else? I haven't told my back surgeon I'm going to a pain management doctor (recommended by by primary care doctor) because he so egotistical he'll never accept the surgery didn't fix my symptoms. I've had my primary care Dr for 20 years and she knows me very well. She didn't need to call the pain management doctor for me to get what I needed but she would have. Do you have anyone like that who could go to bat for you if need be?