I WANT A LIFE

I sleep all the time, I been trying to go to bed early I went to bed last night at 1:00am, laid there until 2:00am got up took ambien then went back to bed, I just got up at 4:00pm, It's like this every day, My sleep Dr. said it's my pain meds. making me tired, then he tells me I need them, I'm in a great deal of pain, I take Oxycontin, Oxicodone, Lyrica, Maripax, Lexapro, Lidoderm patches, plus in the am with all my pills I take Provigil to help wake me up, I'm suppose to go to the post office because I'm buying a mask from Laura and I haven't done it yet I feel so bad, I would love to get up around 10:00am to enjoy the day time, I wear my cpap some nights I do take my mask off but not every night, Please Please I need help,

Judy

I can't offer medical help, only encouragement - if you know others here are thinking of you (our prayers) & wishing you well, that does help.

The one thing that does come to mind if you are in a position to explore it, is relaxation & breathing techniques that can help take your mind
off other things that keep you awake.

Do you have access to any providers of relaxtion therapy ? - Relaxation & breathing are very tightly linked.

Good luck

DSM

Wow. That sounds tough. I usually can't take any prescription meds because they don't agree with me, so I can't relate to your situation in that way. But that looks like a lot of stuff that could potentially interact badly with each other. I do know that nutrition has a huge effect on how your body can heal itself. I also know the worse you feel the less you feel like eating healthy foods. If you aren't doing any exercise, do something; anything, no matter how limited your abilities. If it's get up and walk around the couch once an hour, or lift a one pound dumbbell. Baby steps. One little thing at a time. And if what you try doesn't work try something else. The only real advice I can give, is don't give up. You're worth it.

As someone who works in a chronic pain clinic, that is a LOT of sedating medications. Ask your doctor about Suboxone. It's expensive, so many docs don't use it, but it works better, lasts longer and isn't as sedating as most narcotics.

Thanks I'll try what everyone has post I go to my pain Dr. on Thursday, I'll ask him about the suboxone,

May I suggest that you bring all your meds with you for your Dr visit so he can actually see what you're taking. As someone who worked in the medical field I know that sometimes as meds are changed, discontinued or added,etc, the records sometimes don't get updated. Also, I note that you don't have a data-capable machine so I'm wondering if you're getting the right therapy. My thoughts are with you.

I've broken my back 3 times and a few years back was in a head-on crash that killed me..... only temporarily..... so I know pain. It's going to be difficult for you I think with all of the chemicals, but please do yourself a favor and look into learning meditation. It takes a little while to learn. It's not magic like a pill. But in a short while I think you'd be amazed at what it can do for you. I am not suggesting that you will be med free. I am now.... but everyone is different. You continue taking your meds but over time you find that you don't need as many or in as large of a dose. ALWAYS under the supervision of your doctor.

Trying this costs you very little (or nothing at all if you find the right teacher) and if you are successful you have a great deal to gain.

It's worth a try.

Peace

Ditto on trying meditation - I'm not good at it, but it helps, even just to try.

And make double - triple - sure your doctor knows every single prescription or OTC drug you take, the outlines of your diet, any exercise you're able to get - or lack of - and the troubles you are having. They sound awful.

If your doctor doesn't seem to listen or take you seriously - check into getting another, if possible.

And good luck. Post back if you learn new things at your next visit....

Like most of the other people on this list, I can't offer you medical advice. But speaking as someone who lost a chunk of her life to pain medications in the middle 1980s, and who has spent the last seven years dealing with substantial hip pain what nothing relieved except certain neutriceuticals, I can offer you sympathy.

First of all, what does your diet look like? What kinds of foods do you or don't you eat? Sometimes pain can make it awfully hard to have an appetite, even when you know you ought to eat. Other times, it can make it entirely too easy to eat foods you know you should not have.

Second, what kinds of exercise, if any, do you get?

Others have addressed the fact that you do not have a data-capable machine, so it's difficult to offer advice about how your sleep therapy may be going.

As you know, the pain management doctor who sent me for my sleep study told me that chronic pain with no apparent physical process involved is often a result of sleep disordered breathing.

She checked into my SC diet, and said that it was an excellent one for my situation, and that the fact that I do water therapy, as taught to me by a trained therapist, three times a week was exactly what I should be doing for chronic pain. Her comment was that once I was sleeping properly, we would see what, if anything else, needed to be done as far as my pain.

With my sleep therapy going pretty well, I have been able to reduce the anti-inflammatories by around two thirds -- going from doses every four hours to two doses per day. (I used to wake up with pain 2-3 times a night, take a dose, and then lie there waiting to go back to sleep.) But I have not been able to reduce my exercise... I wasn't well the beginning of January and couldn't go to the pool, and was soon aching all over, even though my hips -- the original reason I started -- weren't hurting, as such. So I still need my exercise for pain relief.

I would write down the suggestions people have made for you so you do not forget them. It can be hard to remember when you actually get into the doctor's office because there is so much you want to discuss with him/her.

Make a list (and maybe take the bottles) of all the medications, their strengths, frequency of doses, etc. that you are on. With so many medications, it's possible -- but only a doctor or pharmacist could tell you for sure -- that some issues are related to drug interactions.

Start keeping a food diary -- what you eat, when you eat it, and what kinds of reactions you may be having to the food. A lady I know is successfully treating RA with diet.

Sleep is a lynchpin of success in having a life -- but there are many factors in addition to your CPAP as to whether you are getting quality sleep.

Sending healing PINK LIGHTS to you.

Sharperjudy no one knows what it is like for another. I do know with those meds you are taking I would go stark raving mad because they would keep me awake or in fits if I feel asleep. Based on the list of drugs you take you may be chemically dependent so I would suggest you get professional advice as how to withdraw when the time comes. I know the MD's like to keep us out of pain and out of their hair and I have made some mad by not playing their game.

I have been racked with pain for nearly forty years with very active Ankylosing Spondylitis and I have tried about everything. I learned early on I would have no life with pain meds that I could later remember so I left them off except for a few weeks after major operations like hips, knee and shoulder.

The CPAP helped a lot to get my life back because I started getting some good sleep. Massage therapy helps a lot. This past Thanksgiving I tried Acupuncture for the first time and now for the first time in 20+ years I sleep longer than 6 hours without having to get up due to pain. In fact I wake up pain free.

It may not work for you but to be pain free and drug free at the same time gives me a life.

Best of luck and remember NO one knows what you are going through and all of our thoughts/advice should be taken with a gain of salt. Most all meds can cause mental confusion as a side effect so it can be hard to be able to see our way forward from the point we are at currently.

Great advice by everyone before me.
I do not suffer from chronic pain. I did have great pain after my hysterctomy - and listening to music I loved (with earphones) gave me great relief.

O.

Judy,

I feel for you - you do sound miserable. At my worst times, it was the hope that I wouldn't always feel like this that helped me through. Much of that hope came from here, from the experiences and encouragement of others.

We can't know your pain - we just know our own and that pain and its treatments affect our quality of life. A family friend's back is so bad it is not fixable and he's had to resort to a morphine pump after years of all the meds that still didn't resolve the pain, just made him unable to function normally. I can't begin to know his degree of pain or yours, which must be bad to require those meds.

Some things even good sleep can't fix. However, improper sleep seems to correlate with a higher sensitivity to pain. Let's hope that getting your sleep straightened out will at least help take the edge off of your pain, and maybe more. Once you are sleeping better, you may be able to re-evaluate your med doses.

The irony of sleep like yours is on one hand having difficulty falling and/or staying asleep, yet on the other hand feeling sleepy all the time. I used to say I slept around the clock - in snatches of minutes. The beginning of my improvement was in getting my cpap therapy right. It started with getting a loaner apap to check my pressure. Sure enough, I needed 12 instead of 10. And I increased my ramp pressure so I wouldn't feel I was suffocating and snatch the mask off within minutes. I also reduced the ramp time so I was not spending so much time unprotected after falling asleep. Just stopping hitting a 30 minute ramp several times a night made the biggest difference for me. These changes made me able to keep my mask on for increasing periods.

If you are on the Mirapex for limb movements, are your movements resolved? My limb movements have been the bane of my nights, and largely responsible for my fractured sleep. Just based on my experience, proving your cpap therapy is effective, then reassessing the limb movements while using cpap, is a process that when shortcut can leave one always with substandard sleep. I can't speak for you, but when my limb movements aren't under good control, I am more than restless, I am agitated when I sleep and the least little thing puts my nerves on edge. Especially anything touching me that I don't want touching me - including the cpap mask and headgear. Hence the limb movement disorder can sabotage my cpap treatment. Just pointing this out in case you have contributing factors to your continued sleep issues.

Sorry to go on and on. Mainly wanting to convey that there may yet be things that can be addressed to improve your sleep, so you have every reason to be hopeful that the life you are living is not necessarily the life of your future. You're in my thoughts.

Kathy

i can understand your situation, i am new to cpap but i have had to deal with severe chronic pain for many years! after reading the list of meds that you take i can understand that it is having an impact on the way you feel. HAs your pain Doctor looked at other options for pain relief, there as gizmo's such as spinal cord stimulators that can be effective in certain types of pain -and that is drug free! For 8 years i had an implanted intrathecal pump, a pump that was surgically implanted into my abdomen with a catheter that goes around into the fluid space around the spinal cord- the difference that pump made was nothing short of amazing! i had non of the sedating effects of Morphine (the drug they used in the pump) and far superior pain control than when i was taking meds by mouth- i have often said that that pump gave me my life back! it needed replacing late last year as the battery was exhausted but unfortunately i developed a post op infection and the pump needed to be removed- i am now back in a situation similar to what you describe- the battle between adequate pain relief and side effects from the meds- they are going to try a spinal cord stimulator for me soon and of that is not effective then they will try the pump again.

Obviously, these kinds of options are not suitable for all pain conditions but the point is that even with chronic pain, good control needs to be a balance between what helps control the pain to the point we can function without having to deal with problems from the pain meds- have an honest talk with your pain Doc about how you feel. if you want to see more about the 2 pain control methods i mentioned check out http://www.medtronic.com, perhaps it is worth asking you pain clinic about!

I would like to thank everyone For the good advice everything means alot to me gave me something to think about
and to start doing

Sorry to hear about all that pain and fatigue, Judy. I find that pain alone can fatigue me regardless of medications. I realize firsthand what you are going through is no fun... so my heart goes out to you.

You might also consider soliciting advice on message boards that cater to your particular disorder. For instance there are message boards that specialize in pain-related disorders, such as fibromyalgia, trigeminal neuralgia, etc. There are also message boards that cover the general topic of "pain management" such as this one:
http://www.healthboards.com/boards/foru ... .php?f=100

Good luck.