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    Old 04-16-2008, 06:20 AM   #1
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    I really am finding life hard to deal with.

    I am sorry friends, but today things have really got on top of me.... I just cant seem to see an light to the end of this pain. I took my son to school and then I had this sharp pain that stayed at the right and side of my lower back, I sat on the table and I really didnt know whether I could move or pass out........... I moved and just kept going until i got back to the car..... The I was passing all the people running as they were late, and I just making it to the car. I just sat and cried. I am attending my pain management specialist and just on 10mg of oxycontin and 10 mg at night...... doing nothing for the pain.......... He wants me to do intense rehab physio which i wasnt able to do because of the pain, but today of all days I am meant to start in the hydro pool, I was so looking forward to it last night, but today the way my back is I feel I just want to curl up. I am not due back to the pain management specialist until after some physio is done......... I am here saying I should walk, but if I do I will be too sore then for the pool in 2 hours...... I am sick of trying to arrange my time for the time I can be up and manage things.......... I am sorry......... I really really just feel is this my life........ I am sick of knocking on doors and told its your back... exercise...... I am doing all that I can.......... Then when I explain I exercise but am so sore I need to lye down, that is taken as rubbish,,,,,,,, if you continue like that you will never get better. But for one minute if I thought exercise was the cure dont you think i would be doing it. Sorry this exercise and not resting was from the Rheumy....... am I just been impatient, stick to what the Pain Management guy has outlined for me.......... and take from there Round1

     
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    Old 04-16-2008, 08:07 AM   #2
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    Re: I really am finding life hard to deal with.

    Round1,

    I am so sorry to hear you're having such a rough time. I have felt like you lately and was going to post, but saw your thread and immediately felt humbled by your level of suffering. Mine is nowhere near as bad as yours today.

    First of all, do not be hard on yourself. You are a wonderful, loving mother and your son absolutely knows you love him. So don't fret about that. Secondly, stop beating yourself up for not exercising or some other activity when you are hurting. Sometimes your body just says, "No!" and you have to listen to it. It seems to me, however, that you need some additional medication to handle the level of pain you are in. Whatever you can do to make that happen, seems like a good idea to me, IMO. I realize you might have to push, but a good doc would see that you are not able to function and exercise is just not helping you.

    Hang in there. I am sending prayers your way right now! May God grant you peace, strength and RELIEF!

    ((Hugs))
    Tex

     
    Old 04-16-2008, 10:52 AM   #3
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    Re: I really am finding life hard to deal with.

    Round 1,

    I absolutely agree with Texmom - don't be so hard on yourself.
    Situation you are in (and many of us are) is not an easy to deal with. Listen to your body, do only what you can - you body will let you know when you shell stop and what you can't do.
    I walk on days I can and i lay in bed on days I can't. But when I feel better i do what i am not suppose to do, over do it of course, and than pay for it. But all of us have families, kids, obligations and we want to be a part of normal life too, it's understandable.

    You try the best you can; don't feel guilty if something is not in your power - you had a major surgery and your body needs a long time to heal...Give yourself time and be patient. Don't let things you hear from your DRs to intimidate you, you know your body better than they do. Would be so much easier for them if their patients would be out and about in no time; patients like you and me don't look good on their records and this is bother them more than your pain.
    Remember my first surgeon kept telling me he has no idea why do i have such a great deal of pain and why my foot drops after surgery - not suppose to be this way. Well, all this because my surgery failed and because i was left with a lot of neurological problems after, but i needed to see 3 Doctors to confirm this.

    Good luck to you and try to take it easy, girl!

     
    Old 04-16-2008, 11:01 AM   #4
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    Re: I really am finding life hard to deal with.

    I am so sorry, my friend. You do not deserve to feel like this. I definitely agree that you are way undermedicated for your pain level. I know from my own experience that Oxycontin is not a 12 hour med. And even if you were taking it 3 times a day, at 10mg, you would more than likely need something for breakthrough pain.

    I think you need to sit down with this PM and tell him that you can not function. He needs to understand just how much this pain is crippling you. I remember telling my PM, when I first went to him, that it wasn't like I wanted to run marathons. I just wanted to be able to take care of my home and my family. I explained that I had no quality of life at all. None. You should let him know that these meds are not even touching your pain. Let him know that when you go to physical therapy, it is actually increasing your pain level and not just short term.

    You know how I recently started the thread about being our own best advocate? Don't let this doc, tell you how you feel. Only you know what your pain is. He is not God. And you and your insurance are paying him to help you. (As you know, I'm a little prickly about this subject right now.)

    I'm going to tell you just what you have been telling me lately. You don't deserve to have to go through this. He is supposed to be helping you, not making things worse. If he is not working out, maybe a different PM is in order. Are there any others in your area? You deserve to be heard.

    Please know that you are in my thoughts and prayers and I am hoping you can find the relief you so desperately need. Please try not to be discouraged. There is a light out there. I know it can be hard to find, sometimes. But it's there. I wish there was more I could do. You have been so supportive of me. Take good care of youself, and don't feel guilty about not getting things done. It is not your fault. If you need to rest, then rest. I am sure your family wants this for you too. Let us know how you are doing. God Bless, cmpgirl ((((Round1))))

     
    Old 04-16-2008, 11:32 AM   #5
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    Re: I really am finding life hard to deal with.

    Thanks friends, you all made me cry !!! maybe I am having one of those days..... I went to the hydro pool with the pain management group they were doing gentle exercises.......... and i did feel better after it. This was a group of about 6 people who are attending a pain managment course of 3 days over 3 weeks and how to deal and manage chronic pain. I think I am too negative at the moment to do this course !! well no the physio who will work on me one to one.......... said I am at a different stage which is ture. and they all came in buzzing from their course full of positive attitude etc and there i was unable to sit...... and all in a spasm... but I must say the warm water and exercise did help, but I am sore now and I must saw mentally worn out..... my husband came home and put on my socks that I couldnt do there and my son kissed my back...... and did his homework, just proved to me, that yes they do function without me and I dont always have to be the one to do the homework. ! Yes I agree with you medication wise and I did say to my PM that I wasnt finding I was getting the 12 hours out of the tablets and he told me they are a 12 hour release.......... I am happy with him (because if you saw or heard the goings on of my last PM lets say he was like cmpgirls, "BOB 2".). Thank you for being there for me....... i was so glad to see your posts.... thank you from the bottom of my heart.

    round1

     
    Old 04-16-2008, 12:02 PM   #6
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    Re: I really am finding life hard to deal with.

    Did you find that you got on or clicked with any of the others in the group? I can attest to the fact that having another person, to comisserate with, can be a big comfort. Not that these boards aren't wonderful, but support on a face to face basis is always a good thing. Maybe someone to get a cup of coffee with? Even if their condition is completely different, pain is pain. It might lift your spirits a little. Just a thought....Take care, my friend.

     
    Old 04-16-2008, 02:09 PM   #7
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    Re: I really am finding life hard to deal with.

    thanks cmpgirl, it was good, even though they all seemed so much more mobile than me, but suffered all in their own way, which wasnt really visual..... and how you judge people........ i saw them all walking in, good old spring in their step and said,,,,,,,, mmmmmmm bet they dont have back problems, but a good number did ! How easily we assume we are the only ones !! I got chatting to a girl there she was in a positive attitude mode.... she was funny ! but good she has suffered for 18 years and had a spinal fusion so we got chatting but it was kind of hard as we were in the pool and meant to be doing the exercises with the physio so it was only when she gave us a few minutes to relax I was asking the questions !!!!! . She said she searched and searched the country......... tried everything, and she said yes it is her back , but also it is chronic body pain aswell and she found this course a god send and has helped her deal alot. she cant walk very far,,, but is working on it......... I was really anxious to talk to her more but it wasnt possibly really. But I can join them again tomorrow so might be able to find out more. She lives a good 100 miles away so she stays with a friend when doing the course........ but I'd love to get a number just to talk. Then they might discourage that as I am in place where they have left........ they are positive and looking at the good side of things and so happy with the out come of the course. One girl said to me she just ached and ached and she had fallen yesterday and she was the only one that seemed to be a bit down..... but she said she found the physio side excellent. I think I would have been in more of a positive mode too if I didnt have that pain that started at the school...... and of course stayed all day. I have taken it easy tonight and was lying down for awhile but needed to get out before I settled down for the night, I just get so sore from lying there, before the fusion I didnt !. That pain is still there but hopefully after a good nights sleep I will feel better in the morning........ I just want to do the school run..
    cmpgirl, how are you doing, BP and pain wise, I have done all the moaning here but thank you all for replying,

    Texas Mom, please dont stop your frustration and need to vent just because you saw my post, we all need support and I would hate for you to think that your problem is less than mine.

    Moldova, what can I saw........ Guilt...that is the hardest, I know what you are saying about listening to your body,,, i do...... but it was just such a shock to start your day okay(ish) plan to do a few bits,,,,,,, and then whammmmmmmm luckey to get home..... I do take it easy but then find I am worse when I stay lying down, but then cant sit because of the pain..... Before the fusion if the back was sore I'd have to stay all day in the bed, Now 2 hours and I need to get out........ But no problem then at night, (touch wood).

    I hope someday that we will all reach a level where we can manage our pain, and our lives will be easier to deal with and will be able to pass on valuable advice to fellow suffers. But the trouble is there is alot of searching to be done,,,,,,,,, and doors to knock on, and ups and downs. For example this PM is about 10 min drive, never knew he was there, this course he does 10 min drive, Hydro pool 5 min drive.......... My first PM doctor was sending me on a 5 hour car journey, course 8 -5 for 3 weeks........ and one being done on my door step ! after I explaining how I cant sit for more than 30 min ! and walking etc............ So for the moment I am going to keep knocking, and please just a pray that this pain will be sorted in the morning and just back to the normal pain....... Good night my friends and thank you for your support it means alot. Round1

     
    Old 04-16-2008, 03:39 PM   #8
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    Re: I really am finding life hard to deal with.

    Quote:
    Originally Posted by Round1 View Post
    the pain management group they were doing gentle exercises.......... and i did feel better after it. This was a group of about 6 people who are attending a pain managment course of 3 days over 3 weeks and how to deal and manage chronic pain.
    First off I want to tell you that I am sorry that you are feeling so down today and having alot of pain. It does sound like you are way undermedicated and need an adjustment. Maybe your doctor could switch you to the fentanyl patch short term to get better control of your pain and it might work better than the oxycodone. The lowest is a 12mcg (equivalent of 20mg oxycodone/day) but most start out with 25mcg (equivalent of 40mg oxycodone/day) Of course your doctor knows best, just throwing an option out there. You might also want to try a medication to treat nerve pain since it sounds like a lot of nerves were cut. I know where you are at because there were times after my foot surgeries where I would break down crying in severe pain and was only getting Neurontin and maxing out ibuprofen & acetaminophen. I will say a prayer for you that you do get better.

    brian

     
    Old 04-16-2008, 03:42 PM   #9
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    Re: I really am finding life hard to deal with.

    Quote:
    Originally Posted by Round1 View Post
    the pain management group they were doing gentle exercises.......... and i did feel better after it. This was a group of about 6 people who are attending a pain managment course of 3 days over 3 weeks and how to deal and manage chronic pain.
    First off I want to tell you that I am sorry that you are feeling so down today and having alot of pain. It does sound like you are way undermedicated and need an adjustment. Maybe your doctor could switch you to the fentanyl patch short term to get better control of your pain and it might work better than the oxycodone. The lowest is a 12mcg (equivalent of 20mg oxycodone/day) but most start out with 25mcg (equivalent of 40mg oxycodone/day) Of course your doctor knows best, just throwing an option out there. You might also want to try a medication to treat nerve pain since it sounds like a lot of nerves were cut. I know where you are at because there were times after my foot surgeries where I would break down crying in severe pain and was only getting Neurontin and maxing out ibuprofen & acetaminophen. I will say a prayer for you that you do get better.

    brian

    ps Second I wanted to say that I went through a similar pain managment group for 3 1/2 weeks and they get 95% of patients off of narcotic medications, at least the one I went through. I managed to get off Oxycontin & Percocet but it was he** and I was in a HUGE amount of pain. Some people say that it is mind over matter but I just could not withstand the pain anymore even after telling my mind NO and trying relaxation techniques and biofeedback. Maybe I just didn't practice well enough but I never had a whole lot of support and doing it by myself wasn't easy.

     
    Old 04-16-2008, 09:30 PM   #10
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    Re: I really am finding life hard to deal with.

    Oh Honey, I am so sorry that you are feeling so low and I was not around earlier for you.

    I have a suggestion for you. Is there a way you could change the morning pill a little? I suspect you probably get up take the meds and run around getting your son off to school. Why not try taking your med earlier?

    I set my alarm at 4:00 a.m., take my pill, and go back to bed so when I wake up to start my day my medication is already working strong. I am ahead of the curve instead of behind it.

    Since my doctor suggested this to me, I am amazed at how much better my mornings are. I am able to get right up and start my day without the wrath of pain.

    Good luck and I pray that you are feeling a little better tonight.

     
    Old 04-17-2008, 05:55 AM   #11
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    Re: I really am finding life hard to deal with.

    Round1,

    I am sorry to hear that your in so much pain and feeling so down.

    Hugs!!!!

    I did not have a chance to read evey persons post, but I wanted you to know that I am hear to support you as well.

    This Chronic pain thing is a RINGER!!! Ain't it???

    I swear sometimes I have the same type of day that you described in the first post. Sometimes it happens while I am at school and I can't leave. Well I can, but if I do the consequences are great for missing all the presented material. But, anyway, I will just start to hurt so bad that I actually have to get up and leave the room and go and get a big fat "cry on" in the privacy of some far off restroom where no one will hear me crying. Sometimes all I have to do is laugh believe it or not and it can send my neck into a serious spasm. I just dont think it is right when laughing hurts!!!

    Some of the things I try and do when I am feeling the way you are:
    I try to treat myself to a pedicure or manicure if I can afford it. I sometimes go to the hot springs which is a hot pool full of natural sring water that is naturally hot when it comes out of the ground. I like that pool because it is soooo warm and refreshing. I am a spiritual person so I work on surrendering all my fears to a Power Greater than me, whom I call God. I get out in the sun and just sit because the sun is good for me and warms my insides when I am sad.

    Recently I have learned that there is a big part of us that is grieving the loss of the things we can no longer do on our own, or things that we enjoyed doing and can not do now because of our injuries or disabilites. I am speaking for my self here, but when the sadness comes in and I am in pain, (this is hard to do but I do mananage to get it done), I acknowledge that I am sad, and I acknowledge that I am in pain, and then I surrender it. I don't forget about it or anything like that but I own it. It is mine! Then the hard part!! Moving on from that point. All I have is today so I just try to get the things done that I can. I am sure that there are others like me out there who when they are feeling good they over-do, and then pay the price. Yep that's me alright. But somedays I just can't and all I can do is lay around.

    I really have to say to all the mothers out there that live in chronic pain.....you all must be some of the most amazing women on the planet. I just don't know how you manage. It must be very challenging for you all.

    Surely being a Mom in CP must bring up an entire set of issues that I can't understand because I am not married and have no little ones. Then again being alone is tough to I guess. I have family but they are not here in my city they are all far away.

    Round1, Please don't feel hopeless. I know it is tough, I know its uncomfortable, but I also feel that our pain and situations come in and go out like the tide. This tough spot will settle down eventually and you will be in a calm pplace agan. Let God take you up and hold you in this time af elevated pain and guide you through to the other side. Hang in there sweetie!

    In spirit,
    Chrissy

     
    Old 04-17-2008, 07:23 AM   #12
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    Re: I really am finding life hard to deal with.

    Round1:

    I just wanted to let you know that with all you have been through and are going through, you are one tough cookie.

    Keep your chin up. I firmly believe that at some point we are all going to find the relief we all deserve. Whether it comes in the form of acceptance, or actual pain relief, I do believe that we are not destined to a life of daily hell, ya know?

    Maybe I'm just not "there" yet, "there" being to the point of acceptance!! I just started my pain journey in 2004, and it's just hard to know that at 48, I will live every day of the rest of my life like this.

    I think that we are all much stronger than we give ourselves credit for, and none of us are given more than we can handle to deal with. But that's just my philosophy, and it's what helps me get through the moment!

    You have a wonderful family who loves and supports you as I do!! How blessed are we for that!!! Good luck sweetie!! I hope your physio does the trick for ya!! Something has to, right??

    Take care!!
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    Old 04-17-2008, 07:29 AM   #13
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    Re: I really am finding life hard to deal with.

    Quote:
    Originally Posted by cmpgirl View Post
    Did you find that you got on or clicked with any of the others in the group? I can attest to the fact that having another person, to comisserate with, can be a big comfort. Not that these boards aren't wonderful, but support on a face to face basis is always a good thing. Maybe someone to get a cup of coffee with? Even if their condition is completely different, pain is pain. It might lift your spirits a little. Just a thought....Take care, my friend.
    Round1,

    I want to piggyback on something cmpgirl wrote here. I think you need an advocate, someone to come alongside you, even to appointments with the PM doc. This can be so helpful, and it gives the doc another source of information to validate what you've been saying. Please try to make a friend and see if there's any chance they could assist you this way. I know it may sound like you are pushing yourself into their life, but I bet there's someone in that group who'd love to help you this way. Sometimes we are just too weak to fight for ourselves. That's when we need each other.

    steve

     
    Old 04-17-2008, 12:26 PM   #14
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    Re: I really am finding life hard to deal with.

    Hi Round~
    Sorry I missed your post...I feel badly that I dont nswer every one of everyones' posts. I do the same as Moldova. I set my alarm at 6:30 and its working by 7:30 when I crawl out of bed. I forget sometimes, and its terrible.
    I know it helps me tremendously.
    I hope your doc will help you more with the meds. You really should have more. Im a mom and wife, too, and I feel terrible about my family when I cant do things, but it stresses them out more I find, if I get bummed and stressed and sad. They understand more than you may think;]
    Feel better soon! Im off this afternoon to drive my son to his fathers [a 6 hour trip] and turn around and do it again 2 days later. So IM not much good when I get home after a long drive like that. Try to give yourself a break~
    xoxoxoxo,
    IZZY'SMOM

    Last edited by IZZY'SMOM; 04-17-2008 at 05:50 PM.

     
    Old 04-17-2008, 01:15 PM   #15
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    Re: I really am finding life hard to deal with.

    Issys Mom,

    My God............ I cant even stay up for that number of hours in a row... not to mind sit and drive........ Oh mind yourself..... But look you are going to do it, and get thru it............ and relax for those few days before you have to do it again.

    Hopefully next week I will be in a better frame of mind and I know with this proper physio that is designed for spinal injuries etc..... is going to make me sore, but I can deal with that......... I just feel i have wasted 10months of my recovery with my other physio, doing pelvic tilts, leg clamps,,,,,,,,,,,,, the amount of stuff that was done in the hydo pool today was amazing........... I did more yesterday and today learning wise with the exercises than i ever did or would in the 8 months I had been attending one physio !!! which had the approach you are toooooo sore today, I will just give you heat !!!.

    thanks again Round 1 another day nearly over at this side of the pond

     
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