Fatigue & sleepiness? How many are???

[hoops2u]

Tis I again,

The one thing I have been unable to get accustomed to is the level of fatigue and sleepiness that seems to go hand in hand with pain management.

Is this true for most of you or is it just me? There are times when I feel just useless. I hate the fact that I seem to sleep so much or just do not have the energy to do a lot. Once in a while I will have a burst of energy and I give er all I got. Many say I should learn to pace myself. Well, I tried that and ran out of time/energy before I ran out of projects.

Then end result is I am in pain, regardless of whether I go 100 MPH, or take it easy, when the job is done, I hurt anyhow, so I might just as well get as much cramed in that burst as AI can.

But this overshelming feeling of uselessness. Geez, I mean, I have a good life, but I guess I want more. I want what I used to have. The ability to give others JOY, help, whatever they need. Even just entertaining was important to my friends and me. They would call and say "are you going?" If I wasn't going to whatever the event, they would get mad and brow beat me to go. I used to have people over almost every weekend. No more.

Heck, I haven'teven been out of the house since Christmas except 2 times, one for Dr. and one for Dinner. I am not agoraphobic, but I really do love my home and pets.

I am not terribly depressed, as this may sound, because I have always loved being alone. I am a shrink and now write and do cartooning. With modern TV and telephones it's impossible to be ALL alone and I do have family.

But, I just cannot get used to this sleepiness. I do have narcolepsy, apnea, and take all these drugs that I have reduced tremendously. And I have had a better year than ever before, energy wise. I also talked my PM Dr. into giving me Provigil that helps a little. My personal Physician wouldn't give me Provigil, said if they were on that much Morphine they would be sleepy all the time too.
But, I can't read, I keep falling asleep if I sit still very long. And I love to read.

And, mostly, this is the REALLY BIG thing, I feel guilty. Yes I do! Guilty that I am not doing MORE. I suspect it was the way I was raised. In the daylight you need to be busy, working. Sleep at night. Only at night. Ya make yer bed as soon as ya git up, and don't go back there till night. And that was that when I was a kid.

I just hate not being able to do more. I can fall asleep mid sentence. And some days I am so tired I just cannot get going. That's when I take the Provigil. If I can't even watch TV, I gotta do something to change that, so yet another pill.

What is it like for you?

Thanks for your input.

God Bless all,
hoops

[Mark N]

hoops, you are describing my life in many ways. Between the toll that pain brings and the fatigue that my meds bring it is tough to feel like I am doing much more than surviving. I have adjusted to my life after finding that my testosterone levels were so low and now adding injections each month that helps increase my energy. I can say you aren't alone.

[slipnslide]

The one thing I have been unable to get accustomed to is the level of fatigue and sleepiness that seems to go hand in hand with pain management.

There are times when I feel just useless. I hate the fact that I seem to sleep so much or just do not have the energy to do a lot. Once in a while I will have a burst of energy and I give er all I got. Well, I tried that and ran out of time/energy before I ran out of projects.

This sounds so familiar that I feel like I could have been the author!;)


I hurt anyhow, so I might just as well get as much crammed in that burst as I can.

And, mostly, this is the REALLY BIG thing, I feel guilty.


Recently I started PT and was told that my muscles were "severely weak":o. I've always been athletic all my life and had a physically demanding job. I had so much energy and fed off the physical exertion. I felt the most physically fit I had been throughout my adult life. I let the PT know that I understood that I would be in more pain, but wanted to tone what muscles I have left. He agreed and I started a regimen of simple ROM exercises. After just two weeks of doing them and being knocked off my feet for 3 days following each PT session, the PT decided that it was increasing my pain too much so the sessions were stopped. Talk about feeling like a failure.:(:o

[hoops2u]

Cheers,
Mark, I am so glad the injections help you. What exactly are they ? It's so hard to suggest anything at all to my Dr. Each time I do I get either ignored or lectured on "what is, is, and I am just broken, live it".

Seems like my Dr. really is offended by any sort of knowledgeable patient. I once compiled an entire 300+ page book on Central Pain Syndrom. She was mighty upset and told me I did not have that, w/out reading the research, and told me she did not have time to read all crap. I told her she did not need to read the entire book, as I had highlighted pertinent info. My Neurologist determined I do indeed suffer from Central Pain Syndrom. To this day my PCP refuses to talk about it.

Slip, that sucks that you had to stop PT. I found that when I was doing PT, if I had massage prior to the PT I was able to sustain much more of a work-out with less pain. Alas, the Ins. stopped paying when PT had to admit maximum results had been attained. I wish I could magicaly concoct a cure for Chronic Pain Syndrom and Central Pain Syndrom that is not an opiad.

When I was a child it was not good to be ill, considered weak. I can remember my parents poking fun at all the "goldiggers" claiming a bad back so that they did not have to work. And, if I woke up in the AM feeling very sick and needing to be home, my mother would require me to get up, shower & dress. If I was still sick I could stay home. Then she would say, "ya dont look very dam sick to me!" and make me go to school. Then the nurse would send me home w/ fever. Mother would say, you'd do anything to get out of a little work!


So, now I feel, (after years of tapes in my head about malingerers,) guilty about not being very productive. My mother didn't stop working until she was 93, as a clerk in a grocery store. She would still be there, but fell and broke a hip. So ya see?
She likes to tell everybody how "lazy" I am. Her favorite quote "if 'person' would get of their dead *** and do something they would feel better."

I had best stop writing or I will be totally depressed and mostly I am not. Really! I will go create some cartoons now, that always helps.

Oh, and thanks for listening. You folks are the best!!!
hoopa

[Mark N]

hoops, it is too bad your mother has that attitude about you. I admire her determination to work as I feel much the same way but it isn't right to apply it to others. It was a very tough adjustment for me to not work any more.

Testosterone is a male hormone that should be 500ng to 900ng in the average man. Opiates diminish its production and with less amounts it causes tiredness and ED. My levels were down to 35ng before I started getting my injections and it makes a big difference in my energy levels. Even with the injections I still feeling exhausted during much of the day.

[suede]

Hoops,
I really could have wrote most of your post.
I have NO energy and as for sleep, what is that, even though I am ALWAYS tired.

Like you if I get a burst of energy I know I better get all done that I can cause who knows when or if I will get anymore.

No, this is sure not the life that I was expecting or wanted, I thought at this age I would finally be able to do some living for myself for a change, joke is on me and not funny.

Like you I do not not mind being alone and prefer it most times, though I admit there are times I do feel lonely and would like company.

No your not alone at all.

Linda

[Nana4&cntn]

Hoops, I am so sorry your Mom put those tapes in your head! The best thing I can say is to ignore her, because you know better! I have tapes also, I had to put them to rest! It took some doing,but I managed to get it done and buried.

I also could have written your post, although I don't have narcolepsy. I am thinking you may need a new doctor! Someone who understands Chronic pain and is open to listening to you and your needs. I wish I could clone mine for you!

Just know you are doing the best you can and who cares what others think. Maybe invite a friend over for coffee, or just to talk. You don't have to be a Hostess with the Mostess, just be yourself, I am sure your friend understand.

I learned along time ago to do just what I can do in 20 minutes stents a couple of times a day. No heavy work, standing or bending too long.

I hope you beging to have better days,
we are always here for you anytime,
Kathy

[steph2323]

Hoops, I have felt like you do in every regard. I just started on Adderall,which is giving me some energy but not so much that I feel jittery,ect. It makes me feel normal again at times. I find that I get much more done and want to visit with friends, talk on the phone and generally get more done than ever before this pain started. I started it a few weeks ago after I started on Fentanyl and that made me more tired than ever. I'm hoping that in another month or so on this combo that I may not have to cancel everything that I plan to do. My friends and family are very supportive,but I feel so guilty that I am so unrealiable, even for the most simplest things, like going out for a cup of coffee. I cancel like 75% of the time and have tremendous guilt
Stephanie

[uwllv88]

Sure sounds like I wrote your post as well!!! I had some left over adderall and it made a big difference - I felt alive again for the first time in years! I only had a few leftover from an old prescription several years ago so I don't know whether my doctor will give them to me or not. With the narcotic pain meds I'm taking he probably won't. :(
So no, you are not alone - I too love my time alone but feel alone at the same time. I take my meds and need a nap, I get up and need my meds - soon I need a nap. I'm tired when I get up, I'm tired ALL THE TIME, just like you. No energy - I don't get much of anything done and I feel the guilt too. If my husband wasn't gone out of town Monday - Friday I would feel guilty everyday, as it is I only feel guilty when he's home on the weekends. I hate my life - it sucks to be in pain all the time - both physically and mentally.

[Mark N]

I have had some really exhausting days and it seems like no one has the same problem then I read the post here and find out I am not alone. It doesn't give me any more energy but it sure feels better knowing I am not unusual in my response to my PM.

[jtroy]

I could have written that too!! Right before I was hit with cp I would have a "bout" of narcolepsy (or a narcoleptic episode) rarely which my wife and I chalked up to vet school...years later when I became a cp'er and started taking dump-truck loads of opioids it seemed to slowly increase (which, per your PCP, all chalked up to meds plus depression plus stress plus on and on)...until it got to where I literally would be awake talking to my wife driving in city traffic and completely fall asleep which took all of twice with her and my kid in the car for me to get a "drive ban".....so now (all the while knowing the problem was 'secretly' worse than she'd seen) not having car keys (and I shouldn't have been driving like that anyway) put it in my face that the issue was affecting my quality of life (you know...in that lovely way pain puts it in your face as well.)

Anyway...paid a sleep doc a ton of money....bought the equipment from the company he also owned...see where I'm going? He assured me I had Central Sleep Apnea and needed a bipap machine (which I paid mucho dollars to him for)....after 6 months I was worse off than ever never sleeping for more than an hour at a time.....went to my PCP and he said, "well....you already know the diagnosis, right?" I said, "of course, narcolepsy"....long story even longer...started Provigil...had some response which is rare to occur with me. Still having alot of "attacks" though to a level I wasn't "allowed" to drive....he switched me to Adderall...wow, amazing amazing it has been for sure.

Over time I gradually increased to a dosage of 20mg am 20mg noon...completely took it all away without messing with my nighttime sleep. Case in point...Valentine's Day I took my wife a little girl to see Coraline (my 3rd Disney film in like 4 months) and had forgotten my noon dosage...bam, had a narcoleptic episode during the film...take it...not again. For 3 years I've been on that level, don't need it increased...but w/out it I instantly revert to it.

I'll finish by mentioning that in the last year and a half or so my doc gave me the flexibility to take either all of my daily dosage at one or the other of my normal dosing times (for instance, if I really need it for something early day to take it all in the morning)---I found that taking all 40mg at once gives me a jittery, almost withdrawl/skin-crawling/agitated and mean type feeling that makes me question why anyone would ever want to abuse this type of med...too little does nothing, too much is completely horrible...anyway....if you really have narcolepsy (and if you really do a sleep "specialist" likely will refuse to admit you can have it while also taking opioids for pain) think about finding a doc who will listen to you.

[suede]

uwllv88
Like you I deal with a lot of guilt over this my DH is on the road all week and when he is home on the week end I would love to have him good home cooked meals and spend time with him, only it doesn't work that way.
Linda

[hoops2u]

Hello My Friends,

I can't believe I have never heard of Adderall! It seems to be of great help to many of you. I wonder why none of my own Dr.'s have mentioned this medicine? Why is it I have to find the answers and then suggest it to them?

Then, THEN! The Dr is insulted by your knowledge and holds up on any rx for a year or so until they feel you have forgotten YOU were the one who brought it up. Only then, will they prescribe this medicine. So, I try to play to their ego, being the good shrink that I am. I say things like, " remember when you reccommeded such and such Rx? I think you were right and perhaps I should try it after all." Kinda making it sound like #1. it was the Dr.'s idea and #2. I balked at first and am now apologetically acquiescing. Makes the Dr. feel sooooo good. Know what I mean jelly bean. (not all Dr.'s of course Stevie).

So, ummmm, my point here is, it took an act of congress to get Provigil and it does not work consistently. I must work in this Adderrall. First I need to know more about it. I need Pharm Steve.

Pharm Steve!!!! Are you out there? Help me Stevie, help, help me Stevie!

Later Babes and Bobs, I just L U V ya'll!!
hoops

as always, typo's and misspellings done for your amusement. And just remember, the difference between an itch and an allergy is about $150.00 ! aahhh hahaha!!!!

[Mark N]

hoops, is this really you or the imposter:D. If you try the adderall let us know how it works. I keep thinking that I should have more energy and shouldn't be sleepy and exhausted as often as I am yet people here make me realize it is just part of the price we pay. It is too bad it is part of our effort to control our pain enough to have some life. I wonder if I really have much of a life though with my energy levels and pain levels the way they limit what I can do.

I hope your doctor will listen to your request and let you try the medication to see if it helps with your tiredness.

[hoops2u]

Hey Mark,
It's really me, and I can't imagine why anyone would want to be me. Geez, I thought I was protected by poverty, ahhhh hahaha,

As for the Adderall, I will let you know if I try it. But you need to know, I am also diagnosed with narcolepsy. I have lived with this since my teens/college days. It means I can fall asleep standing up and litterally fall over. It is scarey and I have taken antiseizure medication in an effort to help control it.... The Provigil I am taking has not helped all that much.
I am not taking really high doses and don't want to either. It's not healthy, I think.

But as I read down thru' here, all the folks who use Adderral and like their results, I thought, well, perhaps it would work for me as well. I can't help but wonder why my Dr.'s never offered it.

And how are you Pal? Hang in there! I thing beign somewhat tired is going to be part of our life. The good thing is, I can pray for others while I am sitting arounf being tired. So, I keep a preety long list of those in need of prayer. When I am not praying, I cartoon. I love to laugh, so I write comedy and cartoon.

Best to you and God Bless you my Friend,
hoops

hoops, is this really you or the imposter:D. If you try the adderall let us know how it works. I keep thinking that I should have more energy and shouldn't be sleepy and exhausted as often as I am yet people here make me realize it is just part of the price we pay. It is too bad it is part of our effort to control our pain enough to have some life. I wonder if I really have much of a life though with my energy levels and pain levels the way they limit what I can do.

I hope your doctor will listen to your request and let you try the medication to see if it helps with your tiredness.

[Burr]

Tis I again,

The one thing I have been unable to get accustomed to is the level of fatigue and sleepiness that seems to go hand in hand with pain management.

Is this true for most of you or is it just me? There are times when I feel just useless. I hate the fact that I seem to sleep so much or just do not have the energy to do a lot. Once in a while I will have a burst of energy and I give er all I got. Many say I should learn to pace myself. Well, I tried that and ran out of time/energy before I ran out of projects.

Then end result is I am in pain, regardless of whether I go 100 MPH, or take it easy, when the job is done, I hurt anyhow, so I might just as well get as much cramed in that burst as AI can.

But this overshelming feeling of uselessness. Geez, I mean, I have a good life, but I guess I want more. I want what I used to have. The ability to give others JOY, help, whatever they need. Even just entertaining was important to my friends and me. They would call and say "are you going?" If I wasn't going to whatever the event, they would get mad and brow beat me to go. I used to have people over almost every weekend. No more.

Heck, I haven'teven been out of the house since Christmas except 2 times, one for Dr. and one for Dinner. I am not agoraphobic, but I really do love my home and pets.

I am not terribly depressed, as this may sound, because I have always loved being alone. I am a shrink and now write and do cartooning. With modern TV and telephones it's impossible to be ALL alone and I do have family.

But, I just cannot get used to this sleepiness. I do have narcolepsy, apnea, and take all these drugs that I have reduced tremendously. And I have had a better year than ever before, energy wise. I also talked my PM Dr. into giving me Provigil that helps a little. My personal Physician wouldn't give me Provigil, said if they were on that much Morphine they would be sleepy all the time too.
But, I can't read, I keep falling asleep if I sit still very long. And I love to read.

And, mostly, this is the REALLY BIG thing, I feel guilty. Yes I do! Guilty that I am not doing MORE. I suspect it was the way I was raised. In the daylight you need to be busy, working. Sleep at night. Only at night. Ya make yer bed as soon as ya git up, and don't go back there till night. And that was that when I was a kid.

I just hate not being able to do more. I can fall asleep mid sentence. And some days I am so tired I just cannot get going. That's when I take the Provigil. If I can't even watch TV, I gotta do something to change that, so yet another pill.

What is it like for you?

Thanks for your input.

God Bless all,
hoops

I'm new here, so I hope I'm not being out of line with a reply. I saw where you have said you have sleep apnea right ? I couldn't sleep at night to the point I ended up in the hospital 2 times in 2 months. I had all the tests done and they showed I stopped breathing 125 times when I did finally get to sleep. Got a c-pap machine and sleep like a baby. Talk about a difference !!

[911]

i feel like just about everyone else here i cant sleep when i am suposed to and sleep at times when exaustion sets in , i take trasadone for sleep but if i go over 150 mg at bed time it totally ruins my next day ???? i am also on a host of pain meds but i dont think they are contributing to this much if at all , i just so so wish i could sleep a normal night , i have been doing ect for a long time for depresion i dont know if thats part the problem , ther ect i think has reached it's limits to i find myself depressed more than what is normal for me now but i dont dare say much for i may end up back in the hospital , though i will say i am seeing more of the old me than i would care to admitt and that my freinds really scares me ,alot so sorry to rable off topic so i will stop here , i dont get online to much theses days so best of luck with all the sleeping probs were all having ,,,,,,,,,,,,,,,,,,,, Dave ,,,aka,,,,911

[hoops2u]

Burr,
Yes I have some apnea. It has become a popular diagnosis especially when the sleep specialists were able to benefit from the sale of the c-pap and various other "pap" improvments. I found the TAP, a device that I wear in my mouth much more effective, less obtrusive, easy to take on trips, removews quickly when I wanna smooch, and ZI don't look like a "patient" every night when I go to bed. The reason the sleep Dr.'s don't push the TAP is because they don't benefit one iota from it.

In any case, my bigger issue is narcolepsy. And the main point of my post was my perswonal overwhelming feelings of uselessness since I have been challenged with Central Pain Syndrom. I was just wondering how others handle this big change in their lives. For me, I had always worked 12 to 16 hour days and volunteered for various organizations in my free time. Played with the family a LOT and enjoyed thoroughly, the great outdoors. Now, due to SEVERE and chronic pain, zi am mostly a hermit.

I do spend much time praying for those in need. That makes me feel good. When I can, I do cartooning and write humor as well as fiction. And I still do minimal counseling.

I am very happy that you found the c-pap helpful. You input was not, in the least, "out of line". I appreciate hearing from all sources. One never knows what will help. Right? So, thank you ever so much....

Bless You,hoops


I'm new here, so I hope I'm not being out of line with a reply. I saw where you have said you have sleep apnea right ? I couldn't sleep at night to the point I ended up in the hospital 2 times in 2 months. I had all the tests done and they showed I stopped breathing 125 times when I did finally get to sleep. Got a c-pap machine and sleep like a baby. Talk about a difference !!

[hoops2u]

Dave,

I am sorry you have difficulty sleeping. That certainly is NOT my problem. I have just the opposite. I can fall asleep at the snap of the finger. It's mostly the narcolepsy.

But you should know that many pain medications cause insomnia. That's right! You should talk with your pharmicist or Dr. I do know that Vicoden or similar drugs cause severe insomnia with me. Also as simple as Tylenol is somnia inducing. So, it woul behoove you to check with your pharmicist or check with pharm. Steve here in the "Chronic Pain" Section. He is great at sorting out what medication may be contributing to your issue.

Good Luck,
hoops

i feel like just about everyone else here i cant sleep when i am suposed to and sleep at times when exaustion sets in , i take trasadone for sleep but if i go over 150 mg at bed time it totally ruins my next day ???? i am also on a host of pain meds but i dont think they are contributing to this much if at all , i just so so wish i could sleep a normal night , i have been doing ect for a long time for depresion i dont know if thats part the problem , ther ect i think has reached it's limits to i find myself depressed more than what is normal for me now but i dont dare say much for i may end up back in the hospital , though i will say i am seeing more of the old me than i would care to admitt and that my freinds really scares me ,alot so sorry to rable off topic so i will stop here , i dont get online to much theses days so best of luck with all the sleeping probs were all having ,,,,,,,,,,,,,,,,,,,, Dave ,,,aka,,,,911

[Burr]

Hoops,
I do understand what you are going thru. I also have been diagnosed with Chronic pain syndrome and cervical myelopathy from a spinal cord injury in my neck. This happened in 1995, so I have been fighting with this for awhile now.I know what it feels like to feel useless,etc. It just took a long time for me to accept the way things are, and try to just live thru it the best I can. I too pray a lot and have become very thankful for the opportunity to be around my grand kids a lot more than I could when raising my own 4 kids. Then I just didn't have the time with them because of working a lot as a truck mech and working on the side in my own garage at home. My plan was to eventually retire from my job when I became eligible and work on the side at home. Well that didn't work out, but what I have now with my grand kids is a blessing to me. I'm on a lot of pain meds to get me thru the days. I look at it as a different path that God has put me on. That is the only way for me to understand what has happened to me. Hang in there and try to look at the good things in your life. You can find some if you look hard enough. Nice chatting with you.





Yes I have some apnea. It has become a popular diagnosis especially when the sleep specialists were able to benefit from the sale of the c-pap and various other "pap" improvments. I found the TAP, a device that I wear in my mouth much more effective, less obtrusive, easy to take on trips, removews quickly when I wanna smooch, and ZI don't look like a "patient" every night when I go to bed. The reason the sleep Dr.'s don't push the TAP is because they don't benefit one iota from it.

In any case, my bigger issue is narcolepsy. And the main point of my post was my perswonal overwhelming feelings of uselessness since I have been challenged with Central Pain Syndrom. I was just wondering how others handle this big change in their lives. For me, I had always worked 12 to 16 hour days and volunteered for various organizations in my free time. Played with the family a LOT and enjoyed thoroughly, the great outdoors. Now, due to SEVERE and chronic pain, zi am mostly a hermit.

I do spend much time praying for those in need. That makes me feel good. When I can, I do cartooning and write humor as well as fiction. And I still do minimal counseling.

I am very happy that you found the c-pap helpful. You input was not, in the least, "out of line". I appreciate hearing from all sources. One never knows what will help. Right? So, thank you ever so much....

Bless You,hoops[/QUOTE]

[Diandra]

And the main point of my post was my perswonal overwhelming feelings of uselessness since I have been challenged with Central Pain Syndrom. I was just wondering how others handle this big change in their lives. For me, I had always worked 12 to 16 hour days and volunteered for various organizations in my free time. Played with the family a LOT and enjoyed thoroughly, the great outdoors. Now, due to SEVERE and chronic pain, zi am mostly a hermit.

I do spend much time praying for those in need. That makes me feel good. When I can, I do cartooning and write humor as well as fiction. And I still do minimal counseling.


Hi Hoops,
I, too, feel you are describing my life. Obviously you have hit the nail on the head with how alot of us are feeling. It is really rough to go from a very busy, useful, productive person to a hermit. I do love my time alone, as I always have but, this is ridiculous. I recently had my pain meds upped and had Voltaren added as well so I sleep way too much. I fall asleep on the couch watching TV in the evening, wake about 3-4am, take pain meds and waddle off to bed and awake around 10-11am, take more pain meds, fall asleep again, wake late afternoon. If I have the stamina I shower and dress. Most weeks, I only summon the energy to get out to run errands about twice a week. It is a tough life.

My goal is to try and reduce meds to be more productive but then as we all know, you lower the meds and the pain is back and that keeps you from functioning. What a tightwire we all walk. Oddly, though, I am not depressed(although it sounds it)...I am just extremely frustrated.
I do find though that there is a roller coaster existence to this life of chronic pain. I will find something that will help with this sleepiness(will try adderall as many of you have suggested) and that might help for awhile and I will be more productive again and start doing volunteer work again, etc. Then, will hit a flare or sustain an injury and am back to homebound and frustrated. I keep myself going as I know the roller coaster will make it to the top once again. I also remember what it must have been like 50yrs ago before chronic pain docs were around and folks just had to "deal" with their pain and suck it up. I would rather be sleepy than in chronic pain and that realization often kicks me in the butt and keeps me going.

I think that is great you can still do some counseling and do cartooning and write humor. Do you care to share some of the cartooning and humor with your friends here who could really use it? I bet you are really good at it.

Thanks for starting this thread...it has obviously touched alot of us.
It feels great to not feel so alone in this life of chronic pain.
Diandra

[tidge]

Hi All Im new to this forum only registered this evening, but reading through some of the posts has been enlightening especially the fatigue that we all share. I think I can definately relate to you all, having spent most of the day in bed and having my eight year old son look after me instead of the other way round. He is a big help to me but I feel so guilty that he has to be, Im the parent I should be looking after him, but he has learned to recognise when mummy is having a bad day and is a good boy. Introducing myself, my name is Tracey and I live in a small town (Darwen) in northern England, I live with my little boy and my dog and have good support with family and friends near by. I have been dealing with chronic pain now for a couple of years, mine is abdominal pain from too much surgery I guess and now combined with osteoarthritis life isnt much fun at the moment, I now see a PM doc and will be seeing a psychotherepist and PT soon, hoping that is going to help but still in the meantime bounce between exhaustion and insomnia. Alot of which I think is my meds but I feel so useless most days. I have not been able to work properly for a couple of years, so fill my time with voluntary work when I am ok, I have always been so active and busy to have it all come to a stop is abhorrent to me. But I have finally acknowledged that I do have to slow down and have learned to say no to more work but even that is a hateful thing to have to do. Almost as hateful as having to admit to myself that I have a disability that I cant hide or cope by myself anymore. And that I have to ask for help sometimes. I have been reading through some of the hints and tips to make life easier, some I already do and others I think "wow" why didnt I think of that, cheers. What I struggle with the most now is the depression and weight management, over the last few years I have put on so much weight with a combination of the depression and now not being able to excercise without pain and am finding it really difficult to shift any more (have lost 50 pounds but plenty more to go) swimming is about the only thing I am able to do but can only go once a week, so if any of you have any suggestions, that would be brilliant.
Well I have prattled on long enough but I will most definately be adding this site to my favourites, practicle tips and sharing I always find more valuable than being lectured by the "professionals" they might understand but dont live with it so sometimes I find my self switching off to them. Its easy to say you should do this and not do that but they dont know what it is really like to live day to day with it. I will really stop prattling on now. laters everyone.
tata

[Diandra]

Hi Tracey,
I am so happy you found your way to this forum. It is always great to have new members. Sometimes I get tired of hearing myself prattle on and love to hear new voices. It must especially tough with a little one to look after. I don't have kids but many folks here do.

Congratulations on taking off 50 lbs....that is amazing. How did you do it?

Please come back often and, welcome.
Cheers,
Diandra

[ryanbytes]

Tis I again,

The one thing I have been unable to get accustomed to is the level of fatigue and sleepiness that seems to go hand in hand with pain management.

Is this true for most of you or is it just me?


It's totally me especially lately. It takes everything to wake up much less get moving. When I have to leave the house some days I'm so exhausted I want to cry. Having to take the bus (one of my joys actually) doesn't help matters on those bad days. Things move in slow motion.


And, mostly, this is the REALLY BIG thing, I feel guilty.

I think I'm that way more often than not. I try to help whenever and wherever but at the end of the day it doesn't feel like it amounts to much. If I'm able I'll take the garbage down for a friend. She does so much for me and that just doesn't seem like it's enough to give back what she gives me much less something to make me feel anything else. Volunteering comes into my mind but how can I commit myself to something when my own life is so unpredictable. To me it just seems irresponsible and not helpful to anyone. So yeah I feel the guilt quite a bit. I don't do my bit in this life. I do what I can but I feel as though I don't do my bit.

[Stetson]

I know what you mean when it comes to questioning doctor's prognosis;most don't like it.Especially when it comes to pain management.If I didn't take an active roll I'd still be in pain;I asked for meth and got it and knew after the second dose it was the right medication for me.Three years with high pain level and then two days later I was in
Paradise.The side effect of meth is the sleepies but I take ritain (sp?) for that and I am good to go.I've always had an issue with sleep because I can fall a sleep in a second.
I have sleep apnes and being treated for narcolespsy.With pain management you got
to keep going with it.My doc has reached his comfort level with meds so it's time to
get L-3-4 disk removed in hopes they can do artifical disk.I need to have C4-5-6 revision done at C5-6 and I have to have C6-7 done.Also have three bulging disc at
T-9-T12 so my heavy lifting days are over.It's taken me many years to come to terms with this and not fight it.

[tidge]

Volunteering comes into my mind but how can I commit myself to something when my own life is so unpredictable.


I get so frustrated about not being able to work but do volunteer infact do so much volunteering when i am going through a good spell that i work more than if i had a real job but it is finding the right volunteer role, one that you are able to commit but that gives you the leeway to have a bad day, week or month and come and go as necessary. I do my volunteering in school and at the local community centre and can do as little or as much as I can manage and in doing so dont feel as worthless. Its not much but its enough to make me not feel as guilty as I would not doing it. Now is one of those bad spells and I have hardly been into work in the last three months but I know that I am welcome back when I am feeling better, its also a way of making more friends too (added bonus woo hoo:D)

[DeltaT Wade Gates IX]

Hey You All,

It is the Mayor of Bugtussle here where everyone has two names such as Joe Bob Mary Joe, even had a major once named Joe Frank Harris down in Atlanta. It is just old Delta-T that now my two canes it took to get around several years back is now a wheelchair that I was dreading. All from failed lumar and cervical fusion with all titaaanium instrumentation.

This is a great thread regarding Provigil because the same insurance companies i.e BC&BS (to name just one of many for me) who paid for Provigil 2x 20 mgs or 400 mg each morning just to keep my peepers open. This is becoming more of an issue as my cousin is a pharmisuitical sales rep says they all are changing their meds to formulary like it or not.

This is only one of many Insurance Companies who are demanding a letter from the precribing pain doctor proving to the insurance company why your even taking Provigil that is truly meant for Narcolypsy. It is not just Provilgil though it seems as f all meds prescribed must be a formulary med that last year....again they paid for now they are wanting the actual test and test results.

I was tested for ADD and Dyslexia by the lady who wrote the sylobus for the entire USA regarding dyslexia. I went only for the tetsting so I could remain taking Provigil as sleep is not easy but even falling to sleep in my food at a public establishment it got to embarrasing to eat out with my wife of 33 years.

Even with the doctors letter asking for reconsideration the Insurance carrier said Provigil was not designed to keep a person on Opiods and/or opiates is not a qualifier for a person who can not stay awake due to opiods. I have to many maladies to list including fathers suicide and a combat vet from the Nam era.

The doctors cave in and will send you a letter saying they do not get into the politics of a med that works but is not designed for what they might be prescribing it for. I have never seen anything like this before and it seems to be getting worse. I have Osteoporosis or bone density of a 106 year old woman due to Vitamin D does not process which calls for out of pocket compound Vitamin D-3.

I would have been better off if the orthopedic doctor would have done a simple DEXA scan before he opened up my lumbar and cervical spine to find out how severe it was. The shots of Vitamin -D-3 is heck the next day you have flu like sysptoms then day two it is like Tony Saprano's guyd worked you over. They do not pay for compound meds and the doctor who is a specialist of disease of the bone has to give me the shot every 2 wweeks at $200 a shot, then once a month its a trip to the hospital for a worse infusion takes 14 minutes.

The specialty or compound meds are becoming more popular because the doctor and pharmacist do not have to worry about the insurance company the are paid from out of pocket. So we cn not see 7 specialist including the second go round with teeth restoration. As you teeth are bone as well this last restoration just finsished cost was $12,600 in 2008. We went through the same seal in 2000 when we paid $5,000 to restore teeeth, partials, crowns and root canals.

Yes Provigil worked great for me I even called and spoke with Medicare as well as SS Disability. I have two major insurance carriers who fight all the time on who will pay. It is plain as it can be if the Empoyer has more than 100 employees they are the first to pay. Yet the doctor who sends me for the infusion at the hospital said very straight although my wife works for our ISP and Telephone company with over 1,500 employees Medicare pays the Hospital which they eccept but if the doctor does the infusin they pay him 1/3 so he refuses to be a Medicare provider doctor.

I founf that on the high doses of Fentanyl along with MSIR 30 mg three time per day that adderall does not work anything like Provigil. I was a zombie when I was taking Methadone many years ago without taking Provigil. Every year the same major insurance companies are changing the formulary meds as well as out right refusing the meds the doctors proscribe.

It seems to me that if the doctor states he wants a certain med for a certain reson a washed up tech with zero or very little back grounf even in the nursing feild is the ones telling the doctors who they can or can not use. They are on every late night TVshows ITT Tech stating "don't waste your time getting a degree nso you have to take P.E. to be well rounded. Get your degree "not worth much as you want and need the RN's of the world".

It keeps the doctors cost down by using techs is all it does nothing for us who are the long term Chronic Intractable Painer". I spent all of the past 12 years writing to everyone in my district and others in Washington D.C. The beneifit that recently the bill went through was for the military and their families only. I happen to be in that category for the people who remeber me Delta-T, however it needs to fit everyone who is in need and o where to turn. I was even fooled when they kept on saying to writing as many of your reps as possible.

The answer is if provigil works for what ever tyhe doctor gave it to you for it should be filled. I take an older med for nasal cogeestion when it really increases your appitite. I am at 104 soaking wet, malnutrition set in when the Dentist that restored my teeth and placed in some partial took from Januarary 2006- finsihed August of 2008 after promising it could and would be done by my birthdate of 5-8-2006. Then by accident we over paid him by 4,600 dollars with a promise he would reimburst the monies by 12-25-2008.

I told the dentist I already called our lawyer who we have the same lawyer before he could get to him. I informed the dentist that although he did not know but does now, I called The American Dental Association with the complaint aaasing how long would it take if every tooth was restored I got if he was really slow maybe 3 months. So what I seen since 1988 everytime I take any med it causes another issue or sevral to speak of.

I really do hope for everyone else before its all said and done that we are offered something. I was told that there is nothing medical or surgical left for me but pain mangement. What a way to live with no hope in site and over 3,400 plus fractures to date. The last fall caused me to have a compound fracture of the S1 vertabra with aout 26 side fractures. I was told there was nothing including cement they could do and it would never heal.

My dad committed suicide Memorial Day of 1989 with far less issuess to even think of. We were not left a note when he did this in our family home bought in the 50's in Miami Florida. I would never even concider this as a iable option...especially when some days it hurts to even breathe. That just will never make since to me or my sisters and mom. He was 62 1/2 my mom was 55 with zero income.

In the last ten years of dealing with this Chronic Intractable Pain all I got is bills to prove anything but made sure I got a cop of every Scan and the doctors notes so I had plenty of documentation. This is not a wheelchair type iissue which is a pet peeve of mine. I do know far more people with hidden disabilities like CP so the wheelchair on my tag just is no more than a target for people to target me for you name it.

I feel like a prisoner in my own home. I do not answer the door nor will I answer the telephone. I fell for opening the door in a small town and I was confronted by a newly released cracki addict who was caught due to my fast thinking. Yet he was on the next block pistol wipped the 87 year old man on oxygen then raped his wife (86) for 40 dollars in cash to buy a couple of rocks.

He admitted that he was targeting disabled tags in our neighborhood because they are an easy mark until he ran into the crazy guy who said I going to %^#*@) up you lunch pal. It is amzing what a shot of adrinylin will do when you are backed in a corner. I was also in Special Forces the reason the nick name Delta-T I was in Delta Forces and that day I felt as if I could take on the world. I am not in that shape today bit make sure everyone is aware of isues like this.

Sincerely, Deltap-T aka now TheTin Man-Who-Truly-Can Use-That-Oil-Can

[hoops2u]

Geesh!!!!
What can I possibly add? I am humbled and you are all so very special. Thank you for your responses. I feel so much better. And I also know each of you have much to offer in your apparent commitment to our community here.

Thank you Dear Friends!
Humbly,
hoops

[tidge]

Bad day, bad week, bad month never ending me saying that at the moment, my friends understand and help when they can but cant make it all go away, oh god I wish it would all just go away, wave that magic wand and wake up and be able to sit up not spend the next 20 minutes just trying to get off the bed, but I look around and there is my little boy coming to help mummy get up or just to get me to sign off on his homework and tuck me back into bed, if it wasnt for him I just dont know where I would be, sat giggling in a corner having gone totally insane by now I guess. Is there a point to this prattle, well yes sort of. even when I am at my most tired and in the most pain, I have the one thing that will get me through it all and he is it, better than any drug, better than any therepy if only they could reproduce that special feeling into a drug. I guess you are still wondering what the hell I am still prattling on about and Iguess its just to say to all, focus on that one special thing that, even for a second puts everything else, all the pain and all the anguish, tiredness etc at the back of your mind and we will have less of the bad days, bad weeks and bad months. I know I might sound a bit of a wally saying all of this to you all and have no doubt heard it all before, but right now I am missing my boy, hes away at nannas and its amazing what he does to my spirits and how I feel when he is not here and I wanted to share that. And when he comes home tomorrow I will be sure to tell him what it does for me to have him here, he is my best medicine.

[hoops2u]

Hello Everybody,
Not to hurt any feelings, but,if you don't think the meds some take mess with the mind, just read the last couple of replies here.

Seriously, I am NOT diss-ing anyone, but I have got to tell you, even I myself have the corney belief that the meds I take don't interfere with my rational thinking. Reading here has been a real wake-up for me.

I pray that the research out there come up with something better than opiates for pain control and SOON. This is probably the biggest medical problem in the world today, yet where is the research?

Go to www.painonline.com (http://www.painonline.com) and read up on Central Pain Syndrom and the
Thalmus if you haven't already. A great site for educating yourself on this pain life we are living.

God Bless You All, I pray for your relief,
hoops