INSOMNIACS place to talk in the wee hours

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  • Enerva
    Enerva Member Posts: 3,162
    edited June 2014

    ha ha ha Holly lol

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited June 2014

    Nettie please try all the suggestions here and spookie's pain specialist idea that works with fibromyalgia. With the aromatase inhibitors they put me over the top with pain. But control started when I met my new PCP in Dec 2009. She put me on Savella  which is in the same family drug group as Cymbalta. Valium for particular muscle spasms. Ativan for sleep. An Fentanyl for pain. Oxycodone for breakthrough. In one week I was a different person.

    Sounds like a pharmacy, but I was very careful how the drugs were used. The Fentanyl once it kicked in broke the pain cycle. Savella took awhile to come to blood level. In the first week it was the shorter acting drugs that got me through. Then they were decreased as the other drugs kicked in.

    She also tested me for food allergies/& intollerances. It was a blood test. I had plenty. When I got them out of my diet that helped too. Each one has it's own thing that it does. If I stay away from them life is better.

    Alcohol also makes my pain worse. Weird. But it does. I know I joke about drinking allot of wine. But not b/c the pain connection is so strong, it easy to say no. If I do make a night of it , my bones ache far worse than my head.

    The biggest difference was when I ended the AI's. It took months for the fibro type pain to disappear, but it's pretty well gone.

    In 2007 before BC and then this year, I got new beds(different rooms--long story). That made the biggest difference with the sciatica in the morning. I also have 4 bulging lumbar discs. When I'm on the new beds I don't complain. Put me on the one matress that's hard and the back is screaming.

    The stretching can be your greatest friend or your worst enemy. There's one stretch for me that makes all the 4 bulging discs unhappy. Of course I had to learn the hard way. I did the stretch and after the pain sent me to the PT.  I found out for my type of problems there was one particular maneuver I shouldn't do. I don't do it now. But all the other stretches are good for me. agree with HI1 for sure, but would add it's nice to know if something's going to hurt you. The goal I gave the PT guy was to teach me how not to injure myself. But I had MRI's to help guide him as to where my bones weren't right. He was very happy with that, made his job easy.

    Just like Blue I take an Oxy when I need to. This is where my abnormal liver enzymes work to my advantage. It metabolizes so slow, one-two pills last  almost I swear 24 hours or more.

    Pot helps allot too.

    I have been off Fentanyl since 2010. Off Savella since Dec 2013. Was off Ativan daily for maybe a year and a half until recently when Sleep left. Valium is rare----I reserve it for TMJ pain and neck spasms. 

    I have post polio which is allot like fibro. But since I had fibro after starting Ai's Or maybe everything just got so bad with the AI's. Anyways the biggest change in pain reduction was getting off the AI's. The reduction in pain then took months.

    Gentle hugs Nettie----hope you can put together a plan that works. I remember the worst of it, and I was sobbing the day I met my PCP and she fixed me.

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited June 2014

    Chevy, cute shirts. Any snakes in those rivers? I should go there. Looks like fun :)

    I saw that 444444444sneak in there. What up girl? Are you healed?

    Susan all the tumor marker things can be plugged into google with "define CA125"  A short answer will come up. I was on kindle last night. The stupid machine always picks out words and changes the word I'm typing. I've been in a sleeping jag thing. Using melatonin and Ativan.  Now off schedule. Ladeda Nighty night sassy

    Waving and smiling  L&H&P's sassy

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  • Enerva
    Enerva Member Posts: 3,162
    edited June 2014

    night night 

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited June 2014

    I think Sleep has switched my pills. Someone mentioned as something. Well it's right up in the banner ASCO. Click on it and read the sections that interest you.

    One section on pain recommends management across the board I.e.everyone gets the same treatment no matter the complaint. Walking and cymbalta.

    I bring this up because this organization dictates treatment protocols that the MO s follow. You being aware of these guidelines are important self protection. Please, take time to find the sections that apply to you and read. Forewarned is for armed. Hugs sassy

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  • Chevyboy
    Chevyboy Member Posts: 10,786
    edited June 2014

    Morning gals!  Oh Enerva, great pics!  Yes, I saw the bird even in the first picture, AND her/his nest!  How fun!   I had a couple birds build a next in a planter I had hanging on our porch!  So that took care of that plant...  couldn't water the plant!  But those little guys were pretty protected, and went on to live full lives... image

    444444444!  Bout TIME you posted SOMEthing!  That was cute!

    Enerva, I mean to ask, WHAT is your avator?  I see  a hand?  And a person in the back-ground?  Cammi, do YOU know what it is?

    Nettie.... See?  I KNEW Sass would straighten things out for you...  Now you just have to do one of those things, and you will be all fixed!  I know I took Tylenol with something in it... Was it Oxycodone?  That was for my broken hip...  Someone else said they took the same thing.

    Maybe one thing will work for you, if NOT the others that you have tried? 

    Sassie's whole lesson here, is don't drink and take pills... Ha!    Either do one or the other....  not both at the same time.  We'll fix you YET!

    And Sass.... No.... no snakes... Florida doesn't have bugs or snakes, right?   No spiders, no fire-ants, and no, not even ONE love-bug.

    This is another picture, or Janie and Chase, our youngest GS!  They are in that river, with no bug/snake/ protection, and they made it out alive!

    image

    I think he is showing her how to snorkel, or something?  You can see her legs, and how clear that river is... So you have to GO there, and float down the Rainbow River!

    SHE has a life-vest on... whereas the "kid" has nothing.... Ha!  But you can stand on the bottom ..... So it is a little hard to drown yourself.

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  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited June 2014

    Oh NO Chevy. Florida doesn't have ANY of those things you listed. Including gators. Gators are only in Gainsville. LOL

    the best thing about clear water like that is you can see WHAT is coming to bite you!  I still wouldn't get in there. 

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  • Nettie1964
    Nettie1964 Member Posts: 759
    edited June 2014


    Susan, I have two of those thingys and an elbow brace, both recommended by an ortho!  They didn’t do anything for me!!    That is except make my arm more sore!

    Ok, let me run this down, I have talked to my MO, my surgeon, 3 PCP and an ortho about this pain!  I’ve also complained steadily to my chiro for the last 6 months!  Don’t misunderstand, I love all of the doctors except 2 of the PCP’s, obviously that’s why I’ve seen 3, but the last I really like!  That being said, none of them seem to think my issue is serious!  Now all that being said, I’ll add this….sleep is very important!  It seems that when I have a restful sleep, I feel much better the next day, not pain free, but almost!  Now, you may ask, why am I not sleeping…if you read my prior post, this is going to be a repeat, but here goes! 

    First, I have always been a very light sleeper, can’t help it, even on AMBIEN and other sleep aids, I still hear anything and everything!  And then due to a family inherited trait, once I’ve been asleep for any length of time, if anything wakes me, I’m done for the night!  Now you may ask, what wakes me?  Well most of the time, I hate to say, it’s my DH!  And someone on this thread has suggested to me before, separate bedrooms!  I’ve begged for this also, but he is a no go, yet he refuses to respect my need for rest!  It’s to the point, that I’m trying to get in with a counselor!  I don’t know what else to do!  I won’t go into exactly what it is that he does that interrupts my sleep, but lets just say it has to do with turning lights on and taking a shower!

    Now the other thing sometimes is the pain, sometimes it’s the pain that wakes me, but more often than not it’s the DH!

    My massage therapist, yay, I see him today, told me that my brain thinks my pain is worse than it is!  In other words, like someone on one of the threads said, try to ignore it!  I’ve tried this, and believe it or not, when I’m good and rested, I seem to have better luck with this!  Some people may be offended by that, someone basically telling them the pain is in their head, but he actually made sense when he explained it!  He was NOT telling me that I didn’t have cause for the hurt, he was saying that because of everything that I’ve been through over the past year, my brain is on high alert and is telling me that it’s worse than it is! (This probably didn’t make sense)

    And just to add, not only can I not take the pain meds, I do not like to “not” be able to feel if something is wrong!  I know, I’m weird, but I want to know when something is off!  You see, I’ve lived with pain for most of my life due to Scoliosis, but I’ve learned the difference in that pain and something new!  And believe me, this is/was new when it started!

    Another thing that I’ve probably never mentioned here is that I have a weird “I don’t know what” about feeling “things” under my skin, or on anyone for that matter!  So you see, I don’t go around poking and prodding and probably don’t check myself near as good as I should, because if I feel something under my skin, I get immediately weak in the knees and nauseated!  And it’s not just if it’s on me, it happens if I feel that on anyone, example, when my kids were small and they would bump their head, people would say, did it make a knot, I would always answer, I don’t know, because if I couldn’t see it, I certainly wasn’t going to feel around for it!  I’m just weird like that!  It’s amazing that I even “felt” my original lump, and that was by accident!

    Ok, I want to thank everyone for caring so much and offering all the suggestions, but I think I really have tried them all!  Oh and my son is a PT so I get lots of therapy!

    Sorry for the long post…. Sometimes it just helps to talk it out!

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  • Nettie1964
    Nettie1964 Member Posts: 759
    edited June 2014


    Oh, and let me mention, I can't remember but one time that I "cried" at a doctor's office and that was not really crying, just a few tears!  So maybe that's my problem, maybe I just need to cut loose and let them hear me wail!  LOL

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  • Enerva
    Enerva Member Posts: 3,162
    edited June 2014

    lol Nettie my avatar is a picture of my little dog Britney checking out a red foot turtle. 

    well my dogs are gone now that is an all picture, i had two miniature pinchers they both past away ;(

    image

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  • Holeinone
    Holeinone Member Posts: 2,478
    edited June 2014

    image

    morning all, late coffee.....

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  • susan3
    susan3 Member Posts: 3,728
    edited June 2014

    sas.....sooo happy to see your post....taking my doctors hat off now :)

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited June 2014

    Nettie, you gave lots of info to work with LOL. Honest. BBL have to find something :) FOUND IT!!!!!

    This has been in the news lately and describes your husband for sure. You could modify your patterns, but it will take work. Second Sleep is an important subject. Please, read this article through entirely. The bottom line is two periods of sleep were the common practice for millennia until the light bulb changed our sleep patterns. There was first sleep and second sleep.

    The activities in the period between first and second sleep varied. Sex was a common activity between 1st and 2nd sleep. NORMAL. and fun.

    What you may have to modify is when you start 1st sleep. If you go to bed for 1st sleep to late. You'll be to tired for the activities between 1st and 2nd sleep. Thus when you fall asleep after sex, you don't have enough sleep hours to be rested in the morning. Therefore, your body will be fatigued. Fatigue leads to pain.

    Follow the recommendations in the article for at least three weeks. Please, don't vary it. Keep a journal.

    The rediscovery of Second sleep is very important. This was accepted practice until the gaslights and light bulb changed things in the mid 1800's. As human beings that's a blink of the eye in time. Our bodies may be hardwired as the article states, to live and sleep by two periods of sleep. We keep messing with what the usual was for thousands of years :)

    http://slumberwise.com/science/your-ancestors-didnt-sleep-like-you/

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  • Chevyboy
    Chevyboy Member Posts: 10,786
    edited June 2014

    Thanks Enerva!  I see it now.... I'm sorry you lost your dogs....  We lost Lacee also, and I know how much it hurts...

    And Nettie.... All I know is, I can sleep much better by myself.... In my own bed.... in my own room!   I would just go sleep somewhere else... Tell him it's a matter of life or deathbyhusband!    You need your sleep....  Get ear plugs...  just relax before bedrime, and the hell with everything else..

    But I would seriously look into some other med to help you sleep.... also.   Can your Son prescribe you something?  Tell him it is essential!  That it is imperative.... then ask him if your DH could go stay with him nights....Winking

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited June 2014

    Nettie. You describe being in system overload. There is a condition(s) of the Autonomic nervous System referred to as dyautonomia.  I tried to find a simple explanation, but couldn't. You are going to have to dive in and study it. It will take several readings to start making sense.

    Not allot of docs are involved with this type of testing. The article is from a Holistic group. My contact being tested for autonomic dysfunction was through a Pain Mgt doc. If you can locate a doc that does this testing and then USES it to guide your care, that would be the ideal.

    You may want to try Second Sleep plan for several weeks before going to this. You may solve your problems by going back too the old way of living before the light bulb. It will be cheaper.

    Your sensitivity to wakefulness needs to be treated with behavior modification and environmental manipulation. The behavior going to bed earlier, shower before bedtime, and use earplugs.  The manipulation of the environment black out the room. Studies have shown that even the slightest light in the room can disrupt sleep i.e. a lighted digital clock, diffuse light coming through the window from a street or outdoor light.

    Sorry sweetie, lots of homework :)

    http://www.holistichelp.net/dysautonomia-autonomic-nervous-system-dysfunction.html

     

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited June 2014


    Susan you are so funny, Hugs

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited June 2014


    I just put both links in the topic box. Hope they help. :) Sassy

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited June 2014

    By the way Nettie in my earlier post when I said try everything here. I meant all the suggestions from everyone, not just from my post. What works for one may not work for another. There are many many great suggestions from everyone here.

    You did however cause the light bulb to go one for me when you included a full description of night activity LOL Thanks.

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited June 2014


    What is everyone studying? Or getting dinner ready?

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  • Smaarty
    Smaarty Member Posts: 2,951
    edited June 2014

    I'm studying a new solitaire game until I go for a walk. Got to get my steps in. Been modifying clothes. Kinda nice, I don't have to go buy anything new yet. What's funny is my underwear still fit and I know I've dropped a couple of inches from my butt!  I'm sure I'll hit 25 lbs tonight. Hoping!!

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited June 2014


    Yay Smarrty. Hope you think this is funny. That's a good size turkey SingingSillyHeart

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  • Enerva
    Enerva Member Posts: 3,162
    edited June 2014

    lol Sass, I just posted this in another tread maybe you can tell me. minutes ago Enerva wrote:

     I am still having a lot of disconfort from my exchange surgery in Dec 2013. I wanted to ask anyone here, does this pain ever stops? I mean is like nerve pain and in comes and goes, sometime sharp around the scars. I just feel so down knowing that I will start from zero again soon as I will have surgery again, but keep thinking is it ever going to get over?  like no pain.? Or do bc survivor live life with this pain for ever? Forgive me if I sound nuts. It just seems as if it never ends

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  • Smaarty
    Smaarty Member Posts: 2,951
    edited June 2014

    not to gross you guys out but they had this in class a couple of weeks ago and we passed it around. So I've lost at least 4 of these. This is not me.

    image

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  • Enerva
    Enerva Member Posts: 3,162
    edited June 2014

    OMG Smarty you go girl lol 😁 

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  • susan3
    susan3 Member Posts: 3,728
    edited June 2014

    way to go smaarty!!!

    Sas...I am going to look into that nerve condition. Mine are on overdrive a night usually .

    Not doing much today sas, chemo Wednesday, and my get up and go, got up and went two weeks ago...having a real hard time finding it. !!!!   Doc said we could take a week break from chemo and see if I feel better...to afraid to do that...I said no way....so I will keep looking for my get up and go energy :)

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  • ananda8
    ananda8 Member Posts: 2,755
    edited June 2014

    Nettie,

    What a terrible predicament you are in.    I love to toss and turn and it would wake my husband up.  The next time I got a cold, I started sleeping in the guest bedroom so he wouldn't catch it.  I just never moved back.  We both sleep so much better.  Separate bedrooms would certainly help but perhaps separate beds would do just as well.

    If you aren't on any blood thinners, ask your PC if you can take bromelain.  Bromelain is a very effective anti-inflammatory.  It may help with your pain. http://www.ncbi.nlm.nih.gov/pubmed/?term=bromelain+inflammation

    Meditation may also help you.  Here are some simple instructions. http://www.accesstoinsight.org/lib/authors/thanissaro/breathmed.html

    Meditation will certainly help you relax and perhaps sleep.  You do not have to sit in the Lotus position.  Any chair will do.  Or you can try lying flat on the floor or in the bed.  This works as well and the worse that will happen is you will fall asleep.

    Best wishes


     

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  • susan3
    susan3 Member Posts: 3,728
    edited June 2014

    ok...don't have that nerve thing sas......I have another "nerve" thing...but not that one. Back to the drawing board :(

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited June 2014


    Enerva--My recon sucked. I don't think I'm the one to ask. But maybe Whippetmom has a clue. She talks to so many about their experience. If anyone went by my experience, I don't think much reconstruction work would be done.  UGH.

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  • Nettie1964
    Nettie1964 Member Posts: 759
    edited June 2014

    Sas,

    Thanks for all the info!However, let me say, I’ve tried it all!And I do not have the luxury of the darkness thanks to DH!I once told him with all the “little” lightsin our bedroom you could land a plane!!I would cover them all with towels!!But that doesn’t stop him from coming in whenever he feels the need andturn on lights!Not the main light, butcloset light, cell phone light, alarm clock light, bathroom light!It never ends!I’ve begged and pleaded for a change, eventhe light from a TV on in the living room comes in under the door and wakesme!It’s terrible!I’ve tried blindfolds, but even on the nightsI managed to fall asleep with it on, after a few turns it was off and thenthere was light!As for earplugs, thenoises don’t wake me unless it’s extremely loud!And I found when I used earplugs, my ownbreathing sound bothered me!You see, I’mhopeless!!The problem is that he, DH,doesn’t get it because he can sleep anywhere under any conditions!

    I was told by massage therapist today that I had so manyknots that he wants to have an hour session next week!!This is becoming ridiculous andexpensive!!When in truth, I thinkrestful sleep would solve most of it, but can’t seem to get that across!

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited June 2014

    Nettie you're not hopeless. You just haven't found a solution yet. I think we should sic Chevy on him.

    OFF to dinner

    BTW where are Ziggy, Jwoo, and Tang?

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