Last post Thu, May 01 2008 9:58 PM by MaggieRay. 14 replies.
I was just wondering I dont know if Im doing this right but I have had pain half my life than had a hystercromy at 27 years old a dr messed up I was a feeding tubs for 5 years lost of problems so I had to get off then I feel of a deck and broke 5 bones in my foot and it turned into RSD Im in a chair almost 5 years and Im on so much pain meds and its a nerve damage and no cure I live with my 16 yr old son I got divorced in the middle of this I have had stimaltoies and morphine pump and I get injustions in my back I went flatline about 3 weeks ago before making it to the OR I am suppose to have 7 more and it helps take the edge off the pain for 4 days I dont know what to do .Their isnt enough known I was am a hospics nurse now I dont walk work and in pain 24/7 and dont sleep and Im in stage 3 there is only stage 3 . So I dont know if anyone is in the same place Im at all pain is horribale and sometimes unliveable but Im still living. They the drs have tried everything .I dont know what to do...............................
Everyone take Care KarenZelinsky
Hello Karen! Welcome to Disaboom!
I'm so sorry to hear how you are suffering. Unfortunately, I don't have any answers for you, but I am always hear to listen and give out big HUGGGGGSSSSSS!!!!!!
When I am at my wit's end, I ask for help and guidance from the angels, and something usually happens some time after I do. I pray regularly and ask for the strength to get through a difficult time, and maybe that is all you can do for now. I hope someone else can respond with more definite alternatives for you. Hang in there, sweetie. Many of us are suffering on here in chronic pain and also don't know what else to do. We can listen, though, and talking about it does help, so you come on whenever you need to and tell us how you're doing, ok?
Gentle Hugs,
Maggie
Hi Karen....I totally understand 24/7 pain. I can only think to suggest alternative medicine such as accupunture and the like. My problem has been docs that do nothing at all to explore pain relief for me aside from a small amount of meds. I hope I did this reply thing right....just joined disaboom today.
Hi Sherry! Welcome to Disaboom!
Yes, I too, am a chronic pain sufferer with Fibromyalgia and Osteoarthritis for 5 years now. I am going to see a Fibro specialist at the end of April, so I will let everyone know if he offers me any more help or hope. Until then, I'm still suffering too.
Thank you for the welcome. I have Fibro too and would love to know how it goes with a Fibro specialist. I have a load of other pain conditions also and it can get overwhelming at times. I have been part of another disabled community for over a year and found the best part is the understanding and support the members offer each other.
Sherry
HI KAREN! I AM ALSO NEW TO DISABOOM. WELL I HAVE COMPLEX REGIONAL PAIN 2 RSD WHATEVER U WANT TO CALL IT, AND KNOW I DO UNDERSTAND WHAT U R GOING THROUGH. MINE WAS FROM A SIMPLE BROKEN FINGER, YA SAD BUT TRUE DOMESTIC VIOLENCE. I HAVE HAD 10 NERVE BLOCKS JUST TO HELP WITH THE PAIN ALITTLE BEEN TO A NERUSURGEN IN CHICAGO FOR MAYBE A STIMULATOR. ITS SO HARD COS I ALSO HAVE A CHILD AND CANT DO WHAT I USED 2. I AM DOING THIS WITHOUT PAIN PILLS COS I AM SICK OF PILLS. I AM SO BLESSED TO HAVE A DR. I TRUST SO MAKE SURE U TRUST YOUR DOCTOR COS U SHOULD KNOW THERE IS NO CURE WELL RIGHT NOW I HOPE AND HAVE FAITH THERE WILL BE SOMEDAY UNTIL THEN I ALWAYS LIVE FOR TODAY COS U NEVER KNOW WHAT TOMORROW WILL BRING.. I ALSO WENT TO A SLEEP STUDY THERE R 4 STAGES OF SLEEP I GO TO 1 AND 2 NEVER HIT 3 OR 4 AND WAKE UP 16 TIMES A HOUR.. SO DONT FEEL ALONE..HUGS APRIL
Hello Karen,
I can only tell you that the only thing that helps me get through the 24/7 pain in the fact that I have faith that this is all happening for a reason. I haven't found the reason, but I concentrate on the answer. I have been in pain for more than 10 years. It started with a really simple fall, then spiro minigitis and the rest is current. I have suffered from migraines for so long that I learned to function with them on a daily basis. This is my first time here and this is at the suggestion of my 26 year old daughter. I thought I was the only person that felt pain 24/7. It is a relief t know that I am not going completely crazy. I have a pretty decent doctor, the only problem I have with him is that he is a man. Most men just don't get it when a woman says she's in pain. I wouldn't trade him for the world. He actually listens and takes everything I say into consideration. I am not good at expressing my inner feelings, but I'll try in order to encourage you for just another day. I feel as if God has something in place for those he has put in our position. Hold on and have faith, he will reveal his plan to you and others and then you will know that God used you in a way that only he knows how to do. It will be the perfect situation to suit your life and everything you've gone through will make since when the answers are revealed to you. So continue to pray and God will reveal all of the answers through the angels that watch over and protect you. Keep the faith.
bebe1221
Hi,
No two people have the exact same pain, but there are a lot of us who can relate. I always have pain, but get short reprives with self hypnosis, and although a lot of people don't want to hear this, I just give myself to God. I don't know how I would have made it without God in my life. Well, yes I do; I would have ended it. But I know that God has a plan and a purpose in my life. I can be out and about for an hour or two, then half to lay down. I only sleep a couple of hours at a time. I could bitch on and on, but I try to make the best of it. I have found that sometimes reading takes me away from reality or sometimes it's a good movie or even music. I do know that if I spend a lot of time thinking about my pain, it only makes it worse.
Perhaps the purpose of me having to deal with this, is that I am an encouragement to my friends and people I run into. They have a bad day at work or whatever, then think of me and think that if I can keep a smile on my face and keep going, they can too. Of course, I don't always have a smile on my face. We all have those tough times when we wonder how we can go on with the pain (especially at 4 am). Somehow we make it through those times.
I doubt that I have been any help, but hypnosis, acupuncture, biofeedback are the things that have helped me most, but, as you have probably figured out, you just must make the best of it.
Scooby
Karen I'm so sorry your going through so much. Many here do understand daily chronic pain non stop. I have trouble sleeping due to being in one spot for so long, when I wake up it takes a while to get out of bed. Some times naps are better. I get enough rest to make it through the rest of the day. You can always ask for a second opinion, another doctor, or want to see a specialist. I know it's very frustrating when no one can tell you whats wrong with you so you know how to get better. Hang in there, your not alone, feel free to vent away, ask anything, we'll do our best. Take good care of yourself.
does this ever get any better?
hi there and welcome to disaboom
yes we all hnow what pain is like on different levels
there isnt awhole lot you can do but make the best of the time you have
on gods planet
enjoy and take in everything you can
try to do different things that will take your mind
away from the pain reaad watch a good movie
make up a good day dream while laying down put yourself in
a different atmosphere
its hard i know i live with pain 24/7
can hardly do anything
bending twisting and turning are a big no no for me
best of luck
and dont give up hope
Hey Everyone!
Haven't written for awhile due to deep depression and computer problems, but I'm back and doing much better finally....and the computer too! LOL
No, I don't have anything better for pain yet....still waiting to see the Fibromyalgia specialist on April 30, but my dr suggested I try a medication for my depression and mood swings and it is working really well. It is actually an anti-seizure medication, but they also give it to people with bipolar to help stabilize their moods and I cannot believe how much better I feel since going on it. It is called Lamotrigine and I take one 25mg. dose twice a day. I started on one dose per day and after two weeks started with the two doses per day. I am also still on an antidepressant that I have been on for years, so maybe between the two I have finally found the right recipe that works for me. Hallelujah!
I am able, with getting better sleep and the help with the mood disorder, to fight the pain and manage it better throughout the day and the week. Not waking up feeling depressed has changed my outlook and my whole life in an enormous way. So, if anyone is living with depression, please do go and get help for it. No one has to live like that in this day and age with all the drug treatments there are to choose from. I, personally, cannot take the more common antidepressants called SSRI's because they all gave me migraines, but I take Remeron, or generically called Mirtazapene. I had no side effects from this one and it did help a lot at first. It is a Tricyclic antidepressant and not an SSRI.
I am going to be moving at the end of May, so I am wondering and worrying how I will handle all the packing up and extra work this will cause and how I will get through the pain of it all, but I really need to be in a bigger apartment, as living in 2 small rooms was making me crazy. I finally got a place through the subsidized housing agency here in Canada and once I am settled in there, I know it will also do a lot to help me feel more positive and more relaxed. It also has a balcony, so I will be able to enjoy sitting outside without having to go all the way out. I will love that! I am just concerned about all this work setting me back with my pain, but I am trying to trust in God that I will have help if I need it, and if I can bring myself to ask, and that I will not end up with more than I can handle. I am starting now to pack a little bit every day that I can, so if I can keep that up, maybe it will not seem so overwhelming.
Anyhow, please keep me in your prayers and I know that will help me gather the strength I need to get this done. At least I have a more positive attitude now, and not being in that terrible depression state will help me to have more energy too. Thanks to all for your support and encouragement. It means a lot and I am so grateful.
I read your post and was taken back to a place I thought did not exist. My prayers and heart go out to you. I had C4/C5 splintered into spinal cord, fracture T, and fracture S1 after accident. At the time I did not think I was hurt that badly and continued my daily life. Only until I could not raise my head and had trouble walking/standing did Dr's do further testing which by then the nerve damage was done. For two years I hurt 24/7, the only way I can describe it is crazy unbeliveable widespread pain from my neck down to my feet. I slept only two maybe three hours every three to four days. I know you are hurting severly and the last thing you want is to read about someone elses pain.
I tell you only because I was at a point were I was fighting for my life. Looking for anything other than narcotics which helped some but not much and I was so against using drugs knowing what it does to your body. I knew if I did not have a good support plan I would not make it. I always fell back on these things, if one failed I went to another. Anything to get me thru another hour or day.
I concentrated on someone else. My partner of 20 years was dignosed with stage 4B Lymphoma less than one week after my first and most dangerous surgery. I was told chances were I would come out parylized but by the grace of God I did not. Even in my condition I was the only person my partner trusted and relied on me to make all medical decisions. When that failed I went to family thinking if I ended my own suffering what it would do to them. When that failed I went to prayer, almost constant prayer for sometimes days on end. When that failed I went to self imagery. When that failed I sat and listned to the clock tick the seconds thinking if only I can make it to the next minute until I was in a state of almost self hypnosis. Many times they all failed and I just held on.
I did find that a whirlpool tub helped, at least while I was in it. Which meant spending sometimes all night in the tub with the jets on. My Mother has Fibromyalga and diabetic neuropathy. She recently got a whirlpool tub which has helped her pain a lot.
But the thing that saved my life was getting to reputable pain clinic which tried many treatments and combination of drugs until I can at least somewhat live . I know without there help I would not be here now.
I do not know your pain, only you can, but know that you are not alone. Please keep trying. There is a Doctor out there that can help you. Nobody should have to live their life in uncontrolable pain. Please let us know how you are doing.
Peace,
Charles
Hello Everyone!
Just wanted to let you know that I had my appointment with the Fibromyalgia Specialist yesterday in Toronto (Canada) and I think I have finally found the right dr to actually help me. After four long years of suffering, I am ecstatic! He has assured me that we will try all the options (including pain meds if need be) until we find what works for me for relief. You have no idea (well, maybe you do) the relief I felt in hearing those words. Finally, someone who not only cares and listens to me, but who is prepared to do whatever it takes to help me. I was so relieved to finally find some actual, genuine, help that I cried when I left his office.
He is starting me on a drug for Parkinson's Disease, which they sometimes use for Fibromyalgia patients also. Evidently, it works to stop the messages to your brain of exessive pain signals. I don't even pretend to understand it, but I'm willing to try anything at this point. He did warn me that one of the common side effects can be severe nausea, and that I experience that within the first few days, to stop taking it and call his office and he will fax another prescription for something else to try. He said the severe nausea doesn't happen with everyone, but if it does, it is not something that will lessen or get better with time. So I am hoping for the best and will be taking the first dose tonight before bed.
After a very long, painful and depressing winter, I finally feel some hope again and that maybe life could actually be livable after all. I am in a lot of pain from travelling all day yesterday, but it was well worth the trip. I am also counting my blessings that I hung in there til now, as hard as it has been, and I hope this offers some hope to others who are still trying to find that dr that will help them. Don't give up....they are out there.....I didn't believe it either after so many who did nothing for me and who didn't even listen, but it did finally happen.
Just wanted to share my good news, and now I have to get busy packing up for my move on May 27. I have hardly done anything yet and I need to get cracking! LOL If this drug works, that should help a whole lot with getting it done on time. I pray that everyone out there who is still suffering can just find the courage to hang in there until they finally get to that dr that will "the one". I hope that this gives others hope.....I know I had lost mine....but I now have it back again and I am so grateful.
