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Thread: Fibromyalgia

  1. #1
    Embryo BennyBud36's Avatar

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    Default Fibromyalgia

    I've been suffering chronic back pain for 5 years now and I have had some procedures done like ...
    2- epidural blocks.
    2- radio frequencies.
    5- physical therapy.

    on top of that I was diagnosed with fibromyalgia 3 months ago and man let me tell you ... I have never been in so much pain in my life till I was diagnosed, I mean ... I kind of knew something was wrong with my bones but tried to shrug it off by doing more exercise but still didn't see a change. I knew something was way wrong when I hanged up a pair of pants on a hanger but just putting it on the hanger pole was really painful to where I dropped it to the floor, I told my doctor and referred me to a neurologist ... when I was told I have fibromyalgia I was like "what is that" I asked and he explained it to me and touched my wrists, elbows, knees and ancles in a way that I never new existed ... I did not know I was hurting in all them spots till he pressed down on them.

    Seeing that I never heard of the word and that he prescribed "Lyrica" and a low dosage of "morphine" and I really don't like taking that kind of drug ... I researched my problem and to find out that some doctors diagnosed it as "Lyme disease" and don't even recognize it at all. So I am still researching it because the neurologist was going to give me "Oxycontin" and "methadone" and thanks to watching documentaries and history/educational shows on TV I know all about them and what people can do to it so, I told him "NOWAY" and we agreed on low dosage "morphine" which I am still not okay with it because I only remember that soldiers in combat used morphine and it scares me. Get this .... all this time ... 2 meetings with him and he asked if he could get the x-ray documents. I was mad to say the least and to think he was so fast to give me hard drugs without even looking at my x-rays. I been through the ringer three times over and over, I am a dedicated marijuana smoker and got my smokers card to be safe. I would rather smoke a fat J other than take morphine and lyrica but I am soo broke and can not afford to grow anything .... my wife and I just bought a 4 bedroom modular home and put it on an acre + on land with horses so there's not anything I can put off till later .... I have to do it right then and there, my wife supports me well mentally and in all other ways but she works as an elementary school cook and I stay home with the kids ... (daghter-14) (two boys ... 8 and 4) the time span between our children are far apart I know but when my wife won the war against cancer she won but the doctor told us if we wanted another child that we would have to wait at least 5 years to be safe so we waited and to our surprise he had our 4 year old LOL. So to just round it out a bit .... my back and bones hurt always but they have a new law that people can not buy clones so I am up short on the smoke but maybe something good might come my way, just maybe.

    Okay so you know what I have and what I take ... can anyone give me advice or lend a helping hand ... anything would help. I live in Sacramento California ... small town named "Rio Linda" .

    Thank you to my TY family and luvya all ... take care you all.

    Benny
    Last edited by Shadimar; 01-13-2013 at 09:57 AM. Reason: Fixed spelling, title for Benny

  2. #2
    Embryo fibrofighter's Avatar

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    Aww Benny, I am really sorry.

    So fibro is often triggered by a history of traumatic events like your chronic back pain. It is like your nervous system is overloaded by the messages of pain for such an extended amount of time, and it triggers this hyper sensitivity in our bodies, and the erroneous messages of pain. (when there is rarely inflammation, no tissue or bone damage, joints are fine. It is all nervous system messages)

    There have been some recent breakthroughs in research, seeing trends of a specific virus found in 70% of fibromites. They have also isolated a specific portion of a chromosome that has markers consistently in fibromites genes. It makes us prone to this reaction to trauma.
    I follow a woman on facebook who has a blog about fibro research and support. It is wonderful to keep learning and being validated.(Adrienne Dellwo's fibromyalgia and chronic fatigue page) It helps a lot to know you are not alone, and to read that there really is research going on to hopefully cure us someday. We have come far from the days of being called hypochondriacs and that it is all in our heads.

    There are a lot of other symptoms aside from pain that you may experience like excessive sweating, being extra sensitive to smells and sounds, lights and touch. All nervous system stuff. tingling in limbs, fatigue, so on and so on. It is a gnarly disease.

    So I function well out of stubbornness. I only work 20 hrs a week now, but going down from 40 in March really helped me be more of a mother and wife. I am a chemistry experiment, and resent that. I am on Lyrica and it honestly does help a lot. It sort of turns down that nervous system hyperactivity. I have not ever had significant side effects from it. I also take muscle relaxers for spasms, something for depression (holy ****, go figure I deal with depression eh?) and medicine to balance my thyroid. I do also take narcotic pain medication, which I hate as well. Oh, and ambien for the sleep disorder that comes with this illness. It is the only way I get a good chunk of sleep when my pain is high.
    I used to be someone who managed my health with herbs and homeopathic remedies. I avoided chemical medications believing it was detrimental to our bodies. but that all changed when my life fell apart with these symptoms. I really had to do what I had to, to regain a life.
    After spending a year curled up on the couch hoping it would somehow heal me, I wanted to live again. It was a slow haul to recondition myself, but now I rely on yoga and warm water aerobics as part of my treatment. Now if my pain jumps up, I head for the pool.

    MMJ fits in there as a way to regain some control of my disease management. I get to decide how much I use, what kind I use, without consulting my Dr and going to the pharmacy. It is my additional medication. I have a vaporizer which I love, but I have to use it on a high temp to get the CBD's that help most with pain.
    I do use edibles as well, but they get so expensive.(It is hard for us to afford enough meds at once to make my own butter and such) I found a tincture made locally that really works. Many of them I tried were not effective.
    I live in Colorado, so we have a system of dispensaries. They are trying to ban them in our city, which makes me stressed. I can't grow because of no space and kids. I use so little that I would be a terrible candidate for a caregiver and the cost to "buy in" to the crop is out of my reach. So I fear that my access to MMJ will be going away if the voters decide to eliminate them.
    So I have found that Indica's are the only way I can go. Sativa's seem to all make my sort of overly focus on my pain and seems to amplify it. Afghani strains are the best. I had found a Mazar strain that worked amazingly but the dispensary quit growing it because only a few people used it since it didn't provide any euphoria. Kush's are a super bet for me, Hash Plant was decent. Anything from that family of plants seem to work well for a lot of people with fibro.

    I am so sorry you have joined the family of fibromites, but you can get thru this. The pain is agonizing at times, but you will start to see that moderate activity actually helps your pain and stiffness. Overdoing it however (like shampooing the carpet like I am recovering from right now) can increase your pain.

    I encourage meditation, finding that peace inside to hide in. it helps you feel like you are diving under the waves of pain where it is quiet, instead of fighting it on the surface (hope that make sense). Yoga changed my life, because I spent years trying to get out of my skin, and it helped me settle in and have the strength to to not be knocked down.
    At times I have pondered disability, but I really don 't want that, so I found a great job coordinating a non-profit program with mostly desk work, 20 hours and decent pay, so I will keep trucking for now.

    Feel free to PM me at any time. It can feel lonely, living in a fibro body, but you honestly are not alone. Oh, and do a search for fibromyalgia and spoons. There is a story out there about having spoons to get thru your tasks in the day that really helps those without fibro to understand your limitations.

    Hang in there friend. sorry this is so stinking long, I just have so much I can share since I have been fighting this for almost 6 years (likely earlier, but that was my diagnosis) and I am a healthcare provider so I have a good understanding of the mechanisms of the disease. Really, consider me a resource any time you need one.
    Peace and blessings~ Staci

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    Seedling MaMa G's Avatar

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    Hey Benny,

    Sorry too for your pain, I too have Fibro, Dx almost four years ago, after a workplace injury that left me in severe pain...seems after that, my body just went off the rails.
    I use medical cannabis for pain and sleep at night, mostly indicas as well...they help with muscle relaxation, and send me off to dreamland for a few hours...I use a drug related to Lyrica for pain which really helped turn down the volume for me....Toprimate. As well as Effexor xr, an anti depressant which helps with depression...not that anyone with chronic pain would be depressed lol, and it also has been used for Fibro patients as well for pain.
    I have been on a wait list for a pain clinic for several years, and finally am due to begin in Sept... The staff seem very knowledgeable,compassionate and handled my body with the up most care , respect and consideration...
    I have a lot of emotional work to do, and am not nearly as far along the path of acceptance as Mz Staci, ...I just realized at orientation last week that I have not really accepted that chronic pain means CHRONIC...and I have a feeling I will be doing a few panic dances trying to actually get my head around that...
    Fibrofighter is and has been a wealth of knowledge and she knows her stuff,as well she a caring person, tho you don't need me to tell you that...
    Nice to see you online Staci...
    There are lots of great sites online with documented info on Fibro as well.
    One ofthe most frustrating symptoms for me, besides the endless pain and fatigue is the loss of short term memory from the Rx, and pain, as well as difficulties at times finding words, or understanding sentences, from the chronic pain...I even had my Dr check me for early Alzheimer, The Dr at the pain clinic assures me its a side effect from the chronic pain...I just blaim it on menopause/mentalpause.

    I hope you start to feel better soon, and can find some local support/ groups as well...I just found out my massage therapist has Fibro...and I've been seeing her for a year, wondered why she " Got it " and knew so much about how I was feeling.Its nice to have someone to relate to.

    Take Care Mr BB36,
    Christene, aka MaMa G
    Last edited by MaMa G; 07-29-2011 at 10:04 PM.

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    Seedling E.J's Avatar

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    Unhappy Fibromylagia

    Greetings, i been suffering with L1-L5 disc herniation/bulging & sciatic nerve pain since 2002,in 2008 i was discharged from a pain management clinic for THC in my UA!!!!I was on methadone 20mgs a day plus 2 darvocet for my body pain, since the hell of Interferon lasted 3 months with no reduction in viral load plus running out of mmj i was going to commit suicide!They stopped the Interferon.since 2008 i awake every morning in complete Body pain & tired as i d0o not get REM sleep.I am thinking of moveing!!!Oh they say the hep c is a precureser to Fibro & osteoartritis.
    In every Home,In every Heart,In every Nation,One Prayer....That all may live in Freedom and Peace reign Everywhere. eye for an eye will make us all blind-muhatma Gandi.

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    Flowering Member Tweedybird's Avatar

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    This isn't an active thread, but I would like to rant a bit. I have fibromyalgia, chronic pain and arthritis. I don't tell people I have fibro because they don't know what it is. Usually if I have to explain, I just tell people arthritis. Anyway, I'm having one hell of a flare up for the last few weeks. It just won't stop. I use mj in the evenings, as it knocks me out. Unfortunately it also makes me eat everything sugary in sight. That can't be helping me at all either. Daytime I'm taking Tramacet, but it isn't working too well lately. I do yoga in the evening, but haven't been attending classes for a while. Anyone have any ideas?

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    Shadbot 4.20 Shadimar's Avatar

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    The tramacet contains the weakest narcotic on the market and I'll fully agree that it's a very weak drug unless you happen to be severely underweight.

    You will be able to find strains that do not have the munchy factor. One of my favourites was one that did not cause appetite, but simply allows an existing hunger to work as intended (Apollo 11 F2).
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    Flowering Member Tweedybird's Avatar

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    Interesting that it might be the strain inducing sugar cravings.

    And yes, I am a light weight, but have gained 10 lb. No big deal, but big for me. Any other pain killer seems to put me right to sleep or doesn't work at all or makes me violently ill (percs). Doc offered morphine, but I'd rather not use it regularly. Save it for trips to the hospital.

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    Flowering Member Tweedybird's Avatar

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    So I'm trying some different things this week. So far, only canna caps and vaporizing in the evening. No other pharmaceuticals in the evening. In the day, only Cymbalta. And I'm back to taking my vitamins, making/eating kale chips, & some items to help "purge" the internal backlog...I am feeling better today. Maybe it will carry on a while. Just impossible to get this flare-up under control. However I feel like I have enough energy to do some yoga. Too bad yoga at work doesn't lead to work getting done...neither does writing on forums... Munchy factor is greatly effected by not eating dinner...go figure. Even if I'm not hungry then, eating a bit for dinner really helps control over eating later.

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    Flowering Member Tweedybird's Avatar

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    Ordered a juicer. Don't know if fresh juice will help anything, but it probably won't hurt me. All those anti-oxidants. Really need to get the rust out of my joints...

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    Flowering Member Tweedybird's Avatar

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    Well, back to having a horrible flare-up again. Omg. Like I have a knife between my shoulders. Also very confused today. Tired. Could go on & on.

    Going to try a non-violent type of chiro where they gently adjust c-spine only. www.nucca.org if anyone is interested. Three people I know tried it & had excellent long-term results. Insurance will cover the cost for me.
    Hippy dippy organic grower

  11. #11
    Rednamalas
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    Boy do I know how you feel.My legs and feet burn like a mofo some times. Like I told the dr it is either here or there or here everyday it is a different hurt lol.It sucks too cause im not old yet and have a long time to deal with this.Too many drunk night and broken bones lol hope you feel better

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    Embryo fibrofighter's Avatar

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    aww drat. I am almost right there with you, with work stress, increased work hours, being horribly ill over the holidays and so on I am on the verge of a flair. It feels like I am there every night, and then back to almost functional when I wake up.

    I attended a rocking conference on nutrition and a speaker mentioned an amino acid that help with our symptoms exactly. I ran out and bought it right then at a table and started it that moment. I have to say that it has not been a miracle cure, but I have noticed a huge difference with my energy level and it seems to be helping me avoid the giant flair I am on the verge of.

    It is DLPA, and a building block of protein. It seems to allow me to take fewer of my Rx pain meds too. In fact I have weaned off of 3 medications since I started taking them. (not pain, but depression, a bp med that helped reduce the pain of being touched and my clothes touching me, etc, and an old school antidepressant that helps with sleep)

    Just wanted to pass that on.

    Hold on tight Tweety. Is there a warm water pool in your area? I know just walking laps, moving my muscles with no impact plus the way it carries my weight really has been a lifesaver when things are getting really bad.

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    Flowering Member Tweedybird's Avatar

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    Well it's not fun feeling 100 years old. Not a lot of abuse on my body, it just worked out this way. I had a good sleep so feel much better. I guess that happens when I double up on night time meds.
    Hippy dippy organic grower

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    Flowering Member Tweedybird's Avatar

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    Having DH swear at me and tell me I'm a bitch & he does 100% of the work around the house doesn't help.
    Hippy dippy organic grower

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    Vegetative Member airedog's Avatar

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    Airedale Terriers worked wonders for my wife; she went from not being able to hold a coffee cup or walk more than 15 minutes, to walking for 30 - 60 minutes, within a year. Flying with one as her service animal, she went from being laid up for 36 hours after travel to having unpacked suitcases and folded our clothes, while I walked dogs after getting home from airport. Major pain medication at the time, but she has since weaned off that and now relies on MMJ and Airedales.








    Dog/s get us out for regular exercise; keep us from being jostled in crowds; open and close cupboards for my wife; help empty clothes dryer; fetch specific items on command (still working on this one); tugs wife's socks off; helps her up hills while walking; barks for help, on command. Generally gives my wife confidence when out in public. Dogs aren't an option for everyone, and they require a lifelong committment in return.

  16. #16
    Rednamalas
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    wow thats great. i can just see me now fighting with my mastiff. lol
    i believe pets bring something out of us. i think it is the unconditional love.



    Quote Originally Posted by airedog View Post
    Airedale Terriers worked wonders for my wife; she went from not being able to hold a coffee cup or walk more than 15 minutes, to walking for 30 - 60 minutes, within a year. Flying with one as her service animal, she went from being laid up for 36 hours after travel to having unpacked suitcases and folded our clothes, while I walked dogs after getting home from airport. Major pain medication at the time, but she has since weaned off that and now relies on MMJ and Airedales.







    Dog/s get us out for regular exercise; keep us from being jostled in crowds; open and close cupboards for my wife; help empty clothes dryer; fetch specific items on command (still working on this one); tugs wife's socks off; helps her up hills while walking; barks for help, on command. Generally gives my wife confidence when out in public. Dogs aren't an option for everyone, and they require a lifelong committment in return.

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    Flowering Member Tweedybird's Avatar

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    I'd love to get a terrier. Was thinking of a smaller one though. However, DH said he'd throw me and the dog out if one appeared. Nice hey? Don't need to subject a dog to that type of abuse.
    Hippy dippy organic grower

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    Shadbot 4.20 Shadimar's Avatar

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    Awwww

    Cute doggy
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    Flowering Member Tweedybird's Avatar

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    I'd like to get one of these some day, Brussels Griffon. Max 12 lbs, but lots of terrier spirit.
    Hippy dippy organic grower

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    Quote Originally Posted by BennyBud36 View Post
    I know I might be spelling that wrong ... sorry, I been suffering cronic back pain for 5 years now and I have had some proceedures done like ... 2- eppederall blocks.
    2- radio frequncies.
    5- phisical theripy.

    on top of that I was diagnosed with fibromiagia 3 months ago and man let me tell you ... I have never been in so much pain in my life till I was diagnosed, I mean ... I kind of knew something was wrong with my bones but tried to shrugg it off by doing more exercize but still didn't see a change. I knew something was way wrong when I hanged up a pair of pants on a hanger but just putting it on the hanger pole was really painfull to where I dropped it to the floor, I told my doctor and reffered me to a neouroligist ... when I was told I have Fibromiagia I was like "what is that" I asked and he explained it to me and touched my wrists, elbows, knees and ancles in a way that I never new existed ... I did not know I was hurting in all them spots till he pressed down on them.

    Seeing that I never heard of the word and that he prescribed "Lyrica" and a low dosage of "morphine" and I really don't like taking that kind of drug ... I researched my problem and to find out that some doctors diagnosed it as "Lime dasease" and don't even recognize it at all. So I am still researching it because the neouroligist was going to give me "oxicontin" and "methadone" and thanks to watching documentarys and history/educational shows on TV I know all about them and what people can do to it so, I told him "NOWAY" and we agreed on low dosage "morphine" wich I am still not okay with it because I only remember that sodiers in combat used morphine and it scares me. Get this .... all this time ... 2 meetings with him and he asked if he could get the x-ray documents. I was mad to say the least and to think he was so fast to give me hard drugs without even looking at my x-rays. I been through the ringer three times over and over, I am a dedicated marijuana smoker and got my smokers card to be safe. I would rather smoke a fat J other than take morphine and lyrica but I am soo broke and can not afford to grow anything .... my wife and I just bought a 4 bedroom modular home and put it on an acre + on land with horses so there's not anything I can put off till later .... I have to do it right then and there, my wife supports me well mentally and in all other ways but she works as an elementary school cook and I stay home with the kids ... (daghter-14) (two boys ... 8 and 4) the time spand between our children are far apart I know but when my wife won the war against cancer she won but the doctor told us if we wanted another child that we would have to wait at least 5 years to be safe so we waited and to our suprise he had our 4 year old LOL. So to just round it out a bit .... my back and bones hurt always but they have a new lew that people can not buy clones so I am up short on the smoke but maybe something good might come my way, just maybe.

    Okay so you know what I have and what I take ... can anyone give me advice or lend a helping hand ... anything would help. I live in Sacramento California ... small town named "Rio Linda" .

    Thank you to my TY family and luvya all ... take care you all.

    Benny

    Okay Benny I'm really sorry to hear about your FMS I have it aswell and I have had this for many years and read much info on this crap. First let me say I really can't believe the doc gave you morphine for FMS ffs that was a really stupid move on his part and you can ask experts about that .. Second Lyrica wow I really hate that drug and trust me when I tell you it does NOTHING for FMS except help you to gain weight. If I was you I would do a cleanes . Dr Oz did a show about cleansing your colon etc. This will help to bring you out of the FMS fog,, I would go to that site and get his info. The more you learn the less you will trust our doctors to know what is right or what is wrong about FMS.I have yet to see any doctor that actually knows what he/she is talking about when it comes to FMS/ CFS . They can diagnose this and that's it, They can not help nore do they try except to give drugs that not only don't work but are just a bandage. Your education on this subject will be your strength .. stay safe headband 707

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    Embryo fibrofighter's Avatar

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    Hey Tweedy, I have been thinking of you. How are you doing with the flair fight?

    and WOW! I have never thought of a service dog to help me, love me, comfort me. I wonder if I could ever talk DH into that. He is not a dog person, not one bit. I do get a lot of comfort from our feline family members when I am hurting a lot. They seem to know, and will curl up all around me on the bed and just stay with me. They don't help me with crap though lol!

    I will be in a pickle today, because I have slept really lightly. My son is going snowboarding today, and it is my turn to take him to the carpool spot. Unfortunately it is a 3 hr drive to the A-Basin ski resort from here, so I am getting him up at 4:45 am so we can get to the ride by 5:30. I am just a terrible sleeper anyway, and when something is off with life, like this disruption just makes me sleep poorly(and stress,, he lost his lift pass and we searched for hours, I am fretting about him being warm enough and keep adding gear because it is supposed to be about 10 degrees on the hill..does he have enough food packed, will his ears make him dizzy on the hill because he is having problems after a long cold...see why I don't sleep lol!)

    I think I will probably take an Ambien when I get home and hope to sleep in a while. Otherwise the messed up sleep with just tip that scale and I will be in full on flair land. (way too freaking cold to go vape in the garage, sigh. I need a space inside..if only my daughter would spread her wings and fly!) May need to follow Tweedy's lead and take a second sleep aid..sleeping well is one of the most important factors for me.

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    Quote Originally Posted by Tweedybird View Post


    I'd like to get one of these some day, Brussels Griffon. Max 12 lbs, but lots of terrier spirit.
    Holy Shit girl you have lots of dogs lol lol...headband 707

  23. #23
    Flowering Member Tweedybird's Avatar

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    Lol I don't have any but would like one of these... Not 5!
    Hippy dippy organic grower

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    Flowering Member Tweedybird's Avatar

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    Hi there. Well fortunately I did get some rest & the flare stopped in its tracks. I went to bed that night at 7 and was able to get enough good sleep.

    Getting up that early would be seriously problematic for me. As it is, crawling out of bed after 1/2 hour is about the fastest I move, every day. I'm just a bunch of cramped up muscles & joints in the morning.

    I keep trying to get a decent amount of sleep as that is really the only thing that makes a day to day difference. Still never have much energy, but at least I'm not stuck on the couch continuously day after day...it has happended.

    Quote Originally Posted by fibrofighter View Post
    Hey Tweedy, I have been thinking of you. How are you doing with the flair fight?

    and WOW! I have never thought of a service dog to help me, love me, comfort me. I wonder if I could ever talk DH into that. He is not a dog person, not one bit. I do get a lot of comfort from our feline family members when I am hurting a lot. They seem to know, and will curl up all around me on the bed and just stay with me. They don't help me with crap though lol!

    I will be in a pickle today, because I have slept really lightly. My son is going snowboarding today, and it is my turn to take him to the carpool spot. Unfortunately it is a 3 hr drive to the A-Basin ski resort from here, so I am getting him up at 4:45 am so we can get to the ride by 5:30. I am just a terrible sleeper anyway, and when something is off with life, like this disruption just makes me sleep poorly(and stress,, he lost his lift pass and we searched for hours, I am fretting about him being warm enough and keep adding gear because it is supposed to be about 10 degrees on the hill..does he have enough food packed, will his ears make him dizzy on the hill because he is having problems after a long cold...see why I don't sleep lol!)

    I think I will probably take an Ambien when I get home and hope to sleep in a while. Otherwise the messed up sleep with just tip that scale and I will be in full on flair land. (way too freaking cold to go vape in the garage, sigh. I need a space inside..if only my daughter would spread her wings and fly!) May need to follow Tweedy's lead and take a second sleep aid..sleeping well is one of the most important factors for me.
    Hippy dippy organic grower

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