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Pain! It is controlling ALL my life!

MsHumptyDumptyMMsHumptyDumpty Posts: 1,567
edited 06/11/2012 - 7:56 AM in Chronic Pain
Hi Everyone, I have been away from here since about the beginning of June.
I have been trying to deal with "life". Things are not going so well and I need to know if any of you who (sadly) also walk in my shoes feel the same way I do or if I am just loaded with self pity and need a swift kick.


I have been fighting for MONTHS to live a normal life of waking up at a set time and going to sleep at a set time. I say fighting as it IS a fight for me. I have days ( at least 4 days a week ) where my pain levels are so high that my pain meds don't touch me and I yell with every step I take. I do as much of my housework and errands at the first part of my day as I can as it is the second part of the day that the pain gets out of control.

It does not matter if I do nothing - the pain still goes high the second part of the day. I have tried everything at this point except surgery. Surgery is not a option for me as the Drs tell me they can't assure me I won't come out worse then I am now.

When I sleep my back and knees spasm so badly that I am in pain while "sleeping". I do have meds to take for them that works but they make me sleep for 9 to 10 hrs and they take aprox 2 hrs to start to work. They are very strong meds. I would never dare drive or anything while on them. So right there shoots about 12 hrs of my day, not even counting the 1/2 of the day where I am in such pain (that these night meds don't touch) that I try not to move any more then I have to. I am living my life around the pain and around the pain meds. Truthfully this STINKS!!!!!!!!!!!

IF I could lay down when I need to and sleep when my body requires it I would be in a better mind set. But too many people "require" things of me that make me have to force myself to get up and go when my body is not ready.
I just don't know what to do. I have tried so hard to force myself to get up after 8 hrs of sleep for a few months now and I just sit and stare or fiddle around not getting anything done as I am still SO tired/drugged.

I have been over all of this with my Drs. We have tried TONS of different meds trying to find a middle ground ad right now I am at the "best" when all things are considered.
It upsets me that I am still expected to live a "normal" life. If I where in a wheel chair or something like that I would not be expected to do the things I am, but since I am a walking "cripple" people still expect me to live a normal life and be able to help them.

Example: I can't not guarantee anyone I can be any where first thing in the day as I have NO clue what kind of night I will have the night before, yet I am still the only one in my family who will take my brother for all his Dr appts 2 hrs each way and his Drs are all in only in the mornings. The drive wrecks my back and knees, as all total I end up driving about 5 hrs, plus walking miles through the hospital with him for testings and stuff, plus I have to gt up at 5:30 to 6 AM to get him there. Which means I go to bed at like 7 PM to allow my meds to work and to get sleep and to get the meds OUT of my body so it is safe for me to drive him. I have to take him to his Drs on Oct 1st and I am already DREADING it.

A part of me wants to tell everyone to figure it out for themselves but they make me feel so so so bad.


WHEN I am allowed to control my own sleep/work/drive times I don't do too bad. I get about 6 hrs a day in where I am productive and have do able pain levels ( I am never pain free) where I can plan my house work, chored, errands and such within my pain limits. Then I spend the rest of my day doing easy things.

I am just very very frustrated right now.
BUT no one in my life seems to get it.
I am feeling "depressed" over all of this as I have tried so hard to be "normal" and I feel so yucky.
I don't know if I am just being too soft on myself and I need to get over it or if I need to give up the "dream" of a normal life and tell everyone else to get over it.


Now aren't you all just thrilled I finally updated here? lol - sorry for being so negative :(

NOTE* My pain meds are:

Fentanyl patch 75 mcg every 48 hrs.
Oxycodone 5 mg - a max of 8 pills a day allowed
Bedtime flexural (sp?) 20 mg and Etodolac 400 mg

L1 - S2 "gone" useless in 1 way or another. DDD. RA. Bone Spurs. Tons of nerve damage/issues. Stenosis. Both knees replaced. 50 yrs old. I had a great fall (hence my user name) at age 41 and it has been a domino effect every since.
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134

Comments

  • First off you aren't alone. I think all of us feel the way you do some of the time. Right now I have alot going on in my life including a son who is away at college for the first time and having some issues. I also have a lot of work that needs to get finished on my house this weekend so the contractor can start his work on Monday. The stress is causing my pain to go through the roof but I can't stop. All that gets me through is knowing that on Monday the worst of the house stuff will be done and that my son will find his way eventually. And that's not even the little stuff like the leak from my central AC that came through the bedroom ceiling this week!!

    The only thing I could suggest is talking to your doctor about an anti-depressant. It might help with the pain and could also help with your mood. Long term pain is wearing on the mind and the body.

    PS about the family...you are letting them use you. Stop letting them and they will figure out another way to get things done.
  • We can all empathize, and I couldn't agree more with what Kris-NY said about your family using you. As true of any disease, it's hard for people who don't have it to understand the limitations of those who do have it. By all means, whenever a relative asks you to do something that causes your pain levels to go through the roof, do yourself a favor by responding with the two-letter word that starts with 'n' and ends with 'o.' A word that size has a lot of power. Be firm.

    Have you asked your doctor about a pain pump or electrical stimulation implant? They've been known to work when all else has failed, even in cases where pain pills provided no relief.

    I'll keep you in my prayers, and I sure hope you can latch onto something that will relieve your pain.

    Gentle >:D< 2 U, Ess
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  • Thank You both :) Pain pump is on the back burner as a when we run out of other meds - he said as of my age of almost 50 he wants to hold off as long as we can.

    stem inplant has/is being considered - lightly off and on. He is not real impressed that it will work on me - something to do with my nerve damage.

    Family won't take no from me - they HOUND me till I am crying my eyes out with guilt -

    Is what I go through with my meds and sleep a common issue with those of us on pain meds?

    Or do you all sleep 8 hrs and get up and live a normal life?

    Maybe I am just a wooze

    L1 - S2 "gone" useless in 1 way or another. DDD. RA. Bone Spurs. Tons of nerve damage/issues. Stenosis. Both knees replaced. 50 yrs old. I had a great fall (hence my user name) at age 41 and it has been a domino effect every since.
  • It is so good to see you on here, though I am so sorry to see how you are feeling. We have missed you here. Was just PMing another member the other day and we were wondering how you were doing, since you haven't been here.

    How are your knees doing post surgery? Is your pain now more back related or 50/50 back and knees?

    Have you talked to your doctor about anti depresants? I know from previous posts of yours that your brother needs help in order to do things such as doctor's appointments. Is there anyone else in your family that could help out for some of these?

    You have and will continue to be in my thoughts and prayers. Please keep coming on here and talking with us. We do "get it" and are here to support you any way we can.

    Big >:D<
    Karen
    >:D< >:-D< : Karen
    L3-S1 herniation and bulges, stenosis, mod facet,ddd,impinged nerves,coccydinia
    discectomy/lami July 2011-unsuccessful
    adr L5-S1 Feb 2012
  • I know for myself, sleep is a real problem for me, as well as getting up and going in the morning.

    I wake up every 1-2 hours, need to get up,reposition, and then try to sleep again. In the morning it takes me hours to get going. Take meds, get in recliner for an hour to wait for meds to kick in, start to get ready, back in recliner. By noon I have a few okay hours and then the evenings are bad again. Never without alot of pain even in my good hours. So no...you are not alone and definately not a wooze.

    more >:D< Karen
    >:D< >:-D< : Karen
    L3-S1 herniation and bulges, stenosis, mod facet,ddd,impinged nerves,coccydinia
    discectomy/lami July 2011-unsuccessful
    adr L5-S1 Feb 2012
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  • ouch I have been away as I have been so depressed while trying to live a normal life and just was not any good to others here - so I stayed away.

    My pain is still the same old back injury pain. My new knees are GREAT!!!!! Minus the night spasms that they give me.

    NO ONE else in my family will help me with my brother - they all know I won't let him down so they just make up excuses knowing I will come through for him. IF I said no they honestly still would not help him out - they are a selfish bunch :(

    I guess what Ia m trying to figure out is if you all will tell me straight up - is this just me am I being soft and need to just buck up and force myself to sleep 8 and live life through the pain no matter?

    PS: for those of you who remember me, note I have not even talked about hubby - same old same old jack *ss! Though I am standing up to him a LOT more these days ;)
    L1 - S2 "gone" useless in 1 way or another. DDD. RA. Bone Spurs. Tons of nerve damage/issues. Stenosis. Both knees replaced. 50 yrs old. I had a great fall (hence my user name) at age 41 and it has been a domino effect every since.
  • sorry did not see your second post.

    really? That is the same thing with ME!!!!!

    I need a few hrs when I wake up to get meds working to have pain some what under control.

    How does your family handle this with you - if you don't mind me asking.
    L1 - S2 "gone" useless in 1 way or another. DDD. RA. Bone Spurs. Tons of nerve damage/issues. Stenosis. Both knees replaced. 50 yrs old. I had a great fall (hence my user name) at age 41 and it has been a domino effect every since.
  • for me, my family is very understanding of my limited lifestyle. My hubby also has chronic pain from failed back surgery so gets it.Kids are almost grown, so I am able to be up in the morning and sit in recliner and at least be able to chat with them as they begin their day.

    Can be hard with family and other commitments as travelling in the car as well as sitting in general when visiting is the worst, so social life, is very limited. Was just told by my doctor, that chances are I will never go back to my job :( I try to do what I can during those limited "okay" hours, and if I need to go out somewhere I try to adjust my day to conserve my energy as well as pain control, by taking the rest of the day easy. Wow, how life has changed.

    <:P about your knees! That is fantastic news that they are doing so well. Sorry about the hubby situation, didn't want to ask but was hoping that it was better.<br />
    Just remember that you always have us.

    >:D< Karen
    >:D< >:-D< : Karen
    L3-S1 herniation and bulges, stenosis, mod facet,ddd,impinged nerves,coccydinia
    discectomy/lami July 2011-unsuccessful
    adr L5-S1 Feb 2012
  • Hang in there. I am in your same boat. My boat keeps sinking and I keep pumping it out :))( ....


    All good advise from the members.

    My PM wont consider a SCS or PP yet either. My NS even had sent a note. He says not yet. It is our very last option and he wants to save it for later...

    It is hard to stay so chipper when life keeps knocking you over.


    Feel Better,

    Julie



  • Thanks again to each of you ! :D

    No ADR for me. I could not do it $$$ wise nor am I really sure about it yet personally.

    I am just wondering do all of us live like this? By this I mean sleeping or sitting more then being awake and/or active due to meds and/or injury.

    Those of you who have to work how to you put in the required number of hours at a job?????

    L1 - S2 "gone" useless in 1 way or another. DDD. RA. Bone Spurs. Tons of nerve damage/issues. Stenosis. Both knees replaced. 50 yrs old. I had a great fall (hence my user name) at age 41 and it has been a domino effect every since.
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