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1794671 tn?1338795391

I need a body transplant

Sometimes I really wonder why me? It is so frustrating and mentally hard on me to go through so much pain and I am only 26. I have had Type 1 Diabetes since I was 7 and when I had my daughter in 2007 I began having severe nerve pain in my neck and shoulders. It started out really bad but I went on chronic pain medication and it is controlled really well now. I still get bad flare ups if I use my hands or walk too much but come on! I am 26?! I want to go on hikes and to the park with my daughter and lift her up and play with her! I want to go to concerts and have fun! It really *****.. I am pregnant with baby #2 it is a boy and I am so excited, but I am really concerned about what is it going to ultimately do to my body and will I end up worse then before? Was my Dr right about me not being able to have kids and if I do it would lessen my quality in life? Well I love being a Mom and I can deal with the pain but it is times when I can't pick up my daughter is when I feel so helpless... Maybe that is what she meant. It makes no difference because I can still shower her with hugs and kisses and that usually makes everything feel better... But when will it end. I want answers! When does chronic pain go away? When will there be a cure...
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Avatar universal
Definitely pregnancy hormones could be playing into a lot.  And that will go away not too long after delivery.  You should not go into withdrawals while pregnant.  It can be very dangerous for the baby.  Please talk to your OB about this.  Most OBs will have you wait until delivery but maybe  your OB has a different thought on this.  In any event, don't cut back on anything until after you see  your OB and talk to him about this.  You don't want that sweet baby going into withdrawals!!!  Withdrawals is bad for the baby, as is prolonged chronic pain.  So ease up for now.  You can always taper off slowly after you have the baby (if that's what you want.)

You'll get through this.  We all have periods of time where we're on a bit of a roller coaster with our chronic pain.  I have a lot of ups and downs whenn thinking about my pain, the meds, etc.  Keep posting.  Becoming part of this community is a big help.
Helpful - 0
1794671 tn?1338795391
Yeah sounds good. I want to keep a good positive outlook. Maybe it is just being pregnant that is making me question everything that has been normal things for me in the past couple years. Talking/typing it out has helped a lot. The pain is bad and I am trying to taper down to a tolerable dose cuz I don't want my child to be going thru NAS when he is born, but it seems impossible right now and it is only going to get worse. The withdrawals are not bad at all it is just the pain that overwhelms me. I am hoping that I can just stop during the last month and just endure what ever pain I go through. My Dr informed me that taking 6 norco a day is fine and it will have no long effects on the baby, but I should try to get down to a lower dose a week beforehand. She gives me the amount that I usually take, I don't have any kind of pain contract or anything. I have been on the same dose because when that dose doesn't work anymore I just go through the withdrawals until my body goes back to normal. Some people have said its not healthy to withdrawal like that every 5 months but honestly I would rather do that then go through a huge 6 month withdrawal in a couple years. My Dr is fine with it she just says to not go over a certian amount of tylenol it can be fatal. and that the amount of narcotic is not really that high considering the amount of time I have been on it. I hope I can get down to less but the pain is the one that decides that unfortunately I feel so helpless like the pain is so bad it only gets worse until I take something then it gets completely better.

I am going to go to sleep thansk for listening and being a good e-friend.
Much love and respect I hope you have a good night too

Your Friend,
Des
Helpful - 0
Avatar universal
A lot of men are just scared.  They don't like to think of something bad happening or going on with you and for them, it's easier to just not know about it.  I think a pain psychologist will help you with a lot of this.  And support groups, either in real life or here, help, too.  My ex-BF couldn't handle my issues but expected me to hold his hand for everything.  It really caused a lot of resentment on my end.

There may come a time that you'll have to take more than what you're taking or change to a stronger med.  It happens sometimes with chronic pain.  We either become tolerant to the med or our pain condition worsens.  As long as you're always taking them as directed, it's not a problem.  I don't like being physically dependent on anything either.  But you have to come to terms with it or you'll drive yourself crazy (I know; I've done it!)

I hope your blood sugars will get under better control after you've had the baby.  Try to enjoy the end of your pregnancy and not stress out too much.  
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1794671 tn?1338795391
Sometimes I think I give the impression that I have it all under control. My husband doesn't really seem too concerned at times and I really feel like I wish he would take more initiative to know what my insulin doses are or what do if I pass out (besides call 911) and how to just comfort me when I am in so much pain I am crying.. and not keep asking over and over "whats wrong whats wrong" because most the time I am in too much pain to even answer.. He doesn't get it.

Tonight my sugars got really low and I told him but he didn't hear me, complete lack of communication I ended up on the floor and he called the paramedics and they came and my sugars got higher but he could have just listened and got some juice with sugar and been fine, instead he got scared and flipped out.

I love him to death and I know he loves me, but sometimes I wonder if I am supposed to be with someone that doesn't seem to care about my well-being health wise. I think being almost 7 months pregnant I have a lot going on in my life concerning my diseases and I need to talk to someone. I will definitely pursue the pain psychologist hopefully my insurance covers it.
Helpful - 0
1794671 tn?1338795391
When I say I take more I mean like I have a certain dose I am not to exceed per day and I am own to half of that and proud of it but then I get severe pain that brings me back up to the limit again and I feel like I am losing. They are not that strong, considering the pain i have. I heard of people taking oxycontin and morphine I don't think that is for me I just want to stick to something that I can get off of easily if I really needed to. It is scary to know that if I ever lost my meds I would be worse off then if I never started them in the first place. It is mentally frustrating to be physically addicted to something and really have no choice of either being physically addicted or in constant pain. UNFAIR!! But I am doing good from my medication It says take 2-3 tablets for pain and I take one to 2 but on the days when it is really bad I have to take 3 for the relief. I feel like a failure when that happens...
Helpful - 0
1794671 tn?1338795391
When I say I take more I mean like I have a certain dose I am not to exceed per day and I am own to half of that and proud of it but then I get severe pain that brings me back up to the limit again and I feel like I am losing. They are not that strong, considering the pain i have. I heard of people taking oxycontin and morphine I don't think that is for me I just want to stick to something that I can get off of easily if I really needed to. It is scary to know that if I ever lost my meds I would be worse off then if I never started them in the first place. It is mentally frustrating to be physically addicted to something and really have no choice of either being physically addicted or in constant pain. UNFAIR!! But I am doing good from my medication It says take 2-3 tablets for pain and I take one to 2 but on the days when it is really bad I have to take 3 for the relief. I feel like a failure when that happens...
Helpful - 0
Avatar universal
You really are in a bad place right now, aren't you?  I think a pain psychologist could really benefit you.  It definitely can't hurt.

So, as to your husband not understanding, he can't.  People think they can empathize with people that deal with chronic pain, but most can't.  I know there are people who do have great support, and I wish I did, but I don't.  Most people don't understand what they can't see and/or haven't experienced.  I try to not complain too much but sometimes I have to so they'll know it's not me being lazy or not wanting to do something or go somewhere, I just can't.  Though sometimes it is good to push ourselves a little because it can be easy to isolate when you have chronic pain.

I have learned one thing and that's to not tell my kids anything is definite.  I've let them down in the past when I've said yes to something and found I couldn't do it.  Now I try to say "if" or "we'll have to see."  It can be frustrating for them (and me) at times but it's better than saying yes and then disappointing them.  It's a little harder for you because your kids are so young, but you need to let them know about your pain issues, at least as much as they'll understand.  Kids sense things and they may worry needlessly if they don't know what's going on.  They may think something is worse than it really is.

When you say you take more medication, do you mean you take more than your prescription allows?  Be careful because if you have a pain contract (and even if you don't) you could be dismissed from your doctor's care for violating the contract.  Some doctors are very, very strict, and even looking to get your script filled early would cause dismissal.  It's always best to call the doctor if you feel like you need more.  They'll either approve you to take an extra one (or more) or they'll reevaluate your pain needs.  I'm not sure what medications you're on, but if you feel like it's not covering your pain, you need to talk to your doctor and they can reevaluate what you're taking and how much.  With chronic pain, you sometimes have to increase a dose or change the med.

If you're unhappy with Rite Aid, then you really should talk to your doctor about changing pharmacies (if that's covered in your pain contract.)  Some people can use any pharmacy.  I am stuck with Walgreens and for the most part they're good, but there is one pharmacist who is a real jerk.  She makes it clear she thinks I shouldn't be on what I was on.

None of us are promised to live to 80 or 90.  Life is uncertain.  I know there are days I think how on earth can I go on like this.  When I have a bad flare-up, I think is this what I have to look forward to?  But we do have some things in our control.  We can eat right, exercise as much as we can tolerate, build healthy relationships, get support, etc.  In your case, keeping your diabetes under good control will go a long way in how healthy you are.

I definitely think you would benefit from talking to someone.  This is a wonderful forum for support but sometimes we need some support in real life.  You're so young to have to deal with all of this so you really need to find the tools to help you deal with it as best you can.

Keep posting.  Giving support helps as much as getting it at times.
Helpful - 0
1794671 tn?1338795391
They way you described your feelings are exactly how I feel. My daughter is only four so she doesn't really understand yet but my husband plays with her and my mom takes her to the park. I feel really bad times when I tell her that we are going to go to the park and then I get really bad pain in my neck and shoulder and I feel like I can't move. It makes me feel like a huge let down to her, but I know I can make it up by playing dolls with her, but still it makes me feel really depressed to know that I didn't follow thru even though it wasn't my fault.

I am Diabetic and started with Carpal Tunnel in 2007 and it was supposed to get better within 6 months but it got really bad and my Dr put my on painkillers it was the only thing that worked. Thankfully a low dose works very well for my pain I don't need to be on the higher opiates like morphine or oxycontin, I do take a lot though when I have bad pain. But in all honesty it is like it cures it... I know they say that it just dulls the pain but when I have really bad pain I take my pills and it literally goes away and won't come back. I get flare ups quite often when I:
Pick up my daughter a lot,
lift things over 30 lbs,
any kind of sport,
long walks,
sleeping the wrong way,
and sometimes I get nerve pain in my hands and fingers and wrist for no reason they just suddenly show up and the pain is debilitating.
I seem to always get pain in my neck and shoulders after being stressed and sleeping the wrong way, I get a kink that gets progressively worse and I end up completely immobilized. I wonder what would happen if I was alone with my daughter and no one to help me. I often get really depressed and scared to the thought of my significant other leaving me, like what if I have no one to take care of me? I dunno, I think the whole pain psychologist idea might be for me because there are times when I feel completely in control, then I can have an episode and feel really really scared and depressed. It makes me wonder how much longer will I live? Am I going to die when I am 55? It worries me.. Thanks for sharing your story I like to have something to connect with and know I am not the only one... Sometimes I feel alone ym husband doesn't get it, he doesn't understand pain and I try not to show it in front of him because I don't want him to see me weak and end up leaving me because I am not worth wasting his time with someone with limited capacities.

I had no idea that having another baby would change my body and my pain again but it did it made it worse, I am not gaining weight as rapidly but the pain is more and more often.

I never thought that I would be 26 years old going to the pharmacy every couple of weeks fighting with someone one way or another to get my pain meds usually because the pharmacist doesn't care to listen to you about how you need to get a TAR or that you need the medicine sent to the Dr a day in advance or when they mess up they NEVER apologize mainly becuase they feel that we shouldn't have this medication at all... I really ahte Rite Aid pharmacy they have messed with my medication numerous times and when I confront them patiently about their mistakes they always walk away and say oh well nothing we can do now.. I really hate that because this is my life we are talking about here! I kinda got off topic with that lol but yes! I never anticipated living my life with taking pills every day on my mind.. I should be thinking about my little newborn boy and what to name him or what he will look like instead I am worrying about How am I going to open the baby food jar or I hope I can maintain proper strngth to rock him to sleep every night until he is 2 (maybe 1 1/2) but in my mind I know there are things I can't do I feel so helpless sometimes.

I really appreciate you a lot, I don't have anyone to talk to that understands. I appreciate this whole forum.
Helpful - 0
Avatar universal
I can definitely relate to how you're feeling!  I've had chronic pain for many years.  My arthritis started early and I got fibromyalgia at 38 after I had my last baby.  It's frustrating to have to deal with chronic pain no matter what but it does seem especially cruel when someone gets it as young as you do.

I know for me the worst part is how it affects me being a mom.  I'm not able to be the mother I used to be.  Sometimes I think my two youngest kids really got the short end of the stick.  I think all they know me as is someone who has always been dealing with pain.  I get tired really easily.  My oldest two had a mom who always let friends over, made a great meal every night, had a spotless house, and we were always doing things.  I was at every game and practice for their sports.  I did things like being the co-leader for Girl Scouts and did all the activities that goes along with it.  I started a kids' book club where we would take turns hosting the book club and would plan a dinner that correlated with something in the book.  I always baked cookies and brownies (from scratch!)

Now there are times I don't get to go the games.  I rarely bake from scratch, and some nights dinner is grilled cheese sandwiches.  It really bothers me because even though I worked and loved my career (and it bothers me I'm no longer able to do that,) my whole life I knew I wanted to be a mom and I knew what kind of mom I wanted to be.  The kids understand for the most part but I know there are times they're disappointed.  Though in truth, it's me who has the worst time dealing with it.

Kids are really resilient.  They bounce back, and what you're able to give them really is enough.  Loving them as much as you do is really all they need.

Not being able to do what you want and what you're friends are able to do is sad.  Even at 49 it saddens me that I'm not able to do what I used to do.  My friends that I've known for over 40 years got together a couple of times this summer and I wasn't feeling well enough to join them.  I know how much fun I missed but once I was in the hospital and once I was in a bad pain flare-up.

Some doctors are now looking at chronic pain as a disease in and of itself.  Some doctors still are very ignorant about chronic pain conditions and how to treat it.  I think one of the most important things is to make sure you have a good pain team so that when new things come up, you'll have different options to try.  And if what you're taking for pain relief isn't working, they'll try something else.

Unfortunately, as you know, chronic pain doesn't usually go away.  Sometimes, depending on the condition, someone may be able to be "cured."  Maybe there's a new surgery or new medication to treat certain things.  But for most of us, the chronic pain is here to stay.

Do you see anyone to talk about how this affects you?  I recently started seeing a pain psychologist.  I'm hoping it will help me learn how to accept my pain and my limitations.  I find I can get depressed at times and also I can get very anxious.  I've only seen him a couple of times so it's too early yet to see if this will help.  But it's something to think about.

Being so young, you've been cheated out of a lot.  I have a friend who thinks what I have going on is the worst thing in the world.  She can bring me down even when I'm feeling okay about things.  She means well and I think she really is trying to empathize but I've stopped sharing with her because I really try to just accept it for what it is and I try to remember that things could be much worse.  I think of the two friends I lost to cancer.  One left 2 young kids behind and 1 left 3 young kids.  Being here is a gift.

Being able to just be with your kids and doing simple things will give them great memories.  Reading, baking, listening to music and just talking together is enough.  My mother was very disabled by a lung condition.  It left her unable to walk far or do much physically.  It always bothered her that she wasn't able to take the kids to the playground or the beach.  My mother-in-law was the opposite.  She could walk miles and miles and do all the active things with the kids, play ball, swim, etc.

My mom died 5 years ago.  My kids still cry about missing her.  Even though she wasn't playing catch with them, she gave them herself.  They all have amazing memories ... baking brownies, having sleepovers, watching movies, reading books.  The point is, they weren't missing playing on the beach with her.  They miss her.  They miss cuddling up with her and listening to her stories.

Maybe try talking to someone.  You got hit with your diabetes when you were a child.  Your chronic pain hit you at the time of your life when you shouldn't have had to think about pain meds and what you can do and what you can't do.  But all we can do as chronic pain sufferers is to have the best pain management team possible and find what works best for us.  When we have flare-ups, we need to take care of ourselves and not push too much.

Congratulations on Baby Number 2!!!  I miss the baby days.  They go so fast.  Mine are now 19, 16, 13 and 12.  These are fun (and challenging) years and I love where they're at, but I miss the infants, the toddlers, and the elementary school years.  They're so innocent and think you're their whole world!!
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