Chronic Pain

Harley

I hope your feeling a little better and they get your illness all figured out for you. It is frustrating to not have a diagnosis and know that some thing very wrong is going on or else you'd not be in all this pain & fatigue, then have family or friends not get it!
I've actually become somwhat of a recluse as it's just too hard to try and keep up with things and everything seems to make the pain worse. So I guess I avoid friends and if family wants to visit me, they'll have to come here. My family does pretty well and my imediate family with husband & son are very supportive, I just think the rest of the family is not around me often enough or does not really understand it at all or try to bother them selves with it. But they try to be nice & I think they try to be supportive in their own ways, but not much. I just don't talk to any of them except my mom & one sister & brother, they all live together. They do alright and try their best.
I really hope your situation improves and you get all the help you need.
I don't have the same page that you do, I have a facebook page?

Take Care, I'll talk to you soon
Betty

Hey, Betty!

Thank you for you kind words. I really do appriciate that. It's hard to go out and have a life when I'm just too tired and in too much pain to go out and party with everyone. I get invited to go out (although the calls/texts are starting to become rarer), but nobody seems to understand when I say that I can't - physically. I've become a bit of a recluse as well. Some friends come over, and we'll go out to a movie every once in awhile, but they don't get it when I say I can't go to Disneyland or stuff like that. One of which is suffering from depression, and she gets annoyed with me because her condition starts acting up on her. I try to understand that she's not really pissed off at me, but it's hard not to take it personally when she yells at me and says that then next time the doctor gives me a medication, I should take it. (Like I don't??) And the other one, Jeff, is pretty much clueless. He doesn't exist during the week because of school/work. He won't call or anything like that, and when he does, it's to tell me he's bored and wants me to come get him. He's not doing it to be mean for sure, but it still hurts. Then there's the boyfriend situtation. My mom bugs me constantly about grandkids, and I can't seem to drill it into her head that getting pregnant at this point is simply not a good idea. My dad has joined her fight for little kiddies as well. GRRR!

Anyways, I'm going to nap for a bit. Have a great day!
~harely

Hello Harley
I hope your doing alright and dealing with the pain issues.
Gosh, I cannot even imagine what that would be like to get hassled about having babies when your already ill and I'm sure it's hard to take care of your self, so why you or anyone else want you to have a baby right now, when you don't sound like your wanting too. Wow! I'm sorry.
Please don't get my wrong, I loved raising my two boys and wish we would of had more kids, but I was not ill when we had kids. My husband & I had discussed having another 5 years ago (before I became ill) and now we are so thankful that it just did not happen, as I would have a really difficult time caring for a five year old right now and my husband already does everything around here, plus work full time shift work in a mill, so He would have a hard time when he has to sleep during the day and work all night. So I guess it all worked out for the best for us. But I do know of many young women with chronic pain that are having their children just fine. Just make sure it's what Harley wants to do dear.
I want grand babies too, but I also want my son & his fiance to finish college first.

I know what you mean about friends, it's so difficult for them to understand chronic pain. I just don't think normal people who've never had any long term pain, can ever come to an understanding of what it's like. I've recently chosen to except that in my family and any friends that I have left. I don't know if you've ever heard of "The Spoon Theory" ? But it's a really good read in trying to explain chronci illness & pain to our family & friends and the young lady that wrote the explaination was about your age and she's done the very best explanation I've ever heard.
http://www.butyoudontlooksick.com/2007/02/the_spoon_theory.php#more Here's the link to the spoon theory and the "you don't look sick to me" Web site, you may like some of the info and I really think you'll find the spoon theory good.

Take Care of yourself, we're all going to make it through this.
Betty

Hi
my name is mike i sufer from cronic back pain and migranes. i hve 2 hernized disk. 1 beening l5s1 and its almost gone. About bone to bone . No doctors will do surgery case im 26 and says it will heal case im so yung. I also hve asthma and anexity.Ive been in cronc pain in back for 5 yrs and cronic side pain for 4yrs . Ive been on alot of meds but seems i have a very high tolarence to pain meds. I was taking off methadone case of asthma meds they dont mix make heart jump throushh and skip. SO was put on oxycotin 80mgs . I was on 3mgs of xanx for panic attacks but finnaly got them under contorl so down to 1mg of xanx. I been to doctor after doctor. None seem to help but keep tring different meds i cant afored. But oxy is working a little bit though. also suffer from migrans from them hitting my spinal cord several times with eperdals.. I will keep you all in this fourm in my pryers i know how you all feel.

Hello Mike
and welcome to the Chronic pain connection. I hope you'll be back and want to share more about your self, your always welcome to join us where ever you'd like. Take Care and hope to see you around.

Betty

Hi, my name is Kristina. I have had chronic pain my entire life. I was born in 1969 with full spina bifida as well as a large lipoma tumor that completely wrapped around my spine. At 2 years the tumor ws removed, vertebrae fused and I went on with life, fortunate to be able to walk and function well. Some problems began in teens, with increased leg pain, etc, but continued on, limiting activities...had to quit cheerleading, running, etc. Finished college, married had kids..all with mild to moderate problems and back and leg pain. Then, in March of 2006 woke up one morning and could put no weight on my left leg. Fell to the floor, but still managed to drive myself to work to see one of the docs i worked with...Through the course of several months and multiple testing I was diagnosed with a tethered spinal cord, as well as another larger tumor that had grown until it was completely wrapped around many nerves and had grown through the protective coating around our spinal cords and was now attached to my cord. Overnight, it seemed, I began suffering from both bowel and bladder incontinence, walked with a cane just to be ambulatory, and very depressed. I had major surgery in July of 06 at Cleveland Clinic to untether the cord,and remove what bits of the tumor they could. While there I got a horrible infection which required additional hospitalization and longer recovery. Unfortunately, after a year of wondering why I was still in horrible pain we found that the patch to close my cord had failed, and I now have a flow of cerebral spinal fluid in and out of my spinal canal causing unbelievable ha's, the tumor-although benign- has grown back with a vengence and now is attached at 2 places on my cord, and the de-tethering has reversed itself! Definitely not the news I wanted to hear. I have become almost sedentary. I take care of my two boys and husband (who have been awesome!) and when they are at work or school I do nothing. I have to put up a front for the boys, or at least I feel I do. The spinal cord stimulator failed on me. I cannot take narcotic meds-I am not only hyper sensitive to them but they greatly affect the headaches and make them worse. I fall alot and walk mostly with a cane, and most procedures, including additional surgery are out of the question due to the weird positioning of my nerves from the tumor. I feel angry alot, and worry about being a burden on my family. I had to leave my job, and have withdrawn from all of my friends because noone really understands what its like when you come down to it. I do have awesome docs who have taken special interest in me since my case is not common. I know their out there somewhere, but I guess i just wonder if anyone else suffers and feels as helpless as I have been?? Sorry such a long post. I don't talk often about this.

Kristine
Sorry for the delay in posting a response, It's been a rough weekend for me too, and I know you understand how that happens.
Your condition is an interesting case to say the least, I do understand the problem & pain when spinal fluid leaks, several years ago I had a spinal tap for passing out episodes and the injection site did not close properly and my own spianl fluid leaked out into the tissues around my spine. What a disaster that was. 3 months in bed, & three blood patches later, my spinal fluid leak had finally closed, so that part of your problems I do understand the horrid headaches you expeience.

I think as you paruse around the site, You'll find that your story is an indiviual problem as far as your personal issues with the tumers, but you will see a common bond that many if not all of us have experienced and that is becoming some what reclusive in are personal life. It so difficult to talk about this type of pain that your in, most folks don't have any idea what it's about or how someone can be in pain 24 x7. They call a great deal when your first down and not going out, they want you to go to lunch, a movie, to there house for dinner, etc. What they don't understand are the huge sacrifices we have to make to attend such functions and how just going to lunch, can cause us to be stuck down in bed and somehow have to pay the pain piper for each and every activity we do. When it turns into this type of problem, we have our families to think about, so we reserve our energy and good days to give to our husband & children, as they are our most important people in our lives. I try hard to reserve mine for my husband & son too, so I understand how difficult it may be for you, expecially if your boys are still school age and have activities that are very important, that you cannot afford to to use any of your energy on any thing or anyone but them.

Your not alone, please trust me when I say, There are literally hundreds and thousands of people living in & with Chronic pain conditions. And many of us here to allow you some friendship and all of us understand what your going through in life. If you stick around long enough and make your way over to the sharepost, you'll find that other mothers are going through their painful conditions and can be of great support for you too.
If you'd like, we have a daily support group here in the forum, it's called the daily grind and you can find it in the off topic area of the fourms, your welcome to join us. If you need any further help navigating the site and finding information, you are welcome to click on my name in this post and send me a private message and I can & will try to help you in any way I can.

Take Care, your not alone and we all Welcome you to the Chronic Pain Connection.
Betty

Hello, Mike and Kristina!

it's hard to live life when everyone thinks your making this up. i was just in the emergency room a few days ago - again, nothing was really accomplished, but this time, the er doc actually believed me when i said that i hurt. he basically said that no matter what was causing, it needs to be addressed. the only problem is that my insurance will not allow me to go see specialists or even my regular doctor for another few months - april, i believe. the er doc did, at least, give me some more vicodin and motrin 800mg - maybe that'll help.

thank you, betty for the link. i'll print it out and post it on the fridge and myspace. you're absolutely right about people who've never hurt 24/7 don't know what it's like to lay in bed and wait until you absolutely can't wait anymore to go pee because it hurts too much to get up. i haven't seen any friends in 3 weeks now, it'll likely not happen for another week or so. they seem to be "too busy" to even send a text. i'm trying to not get pissed off about it, but when i don't hear from them all week and then get a random call about comming over for dinner (which i have to make!), it's hard not to get mad about that. i know i can go over to karin's for dinner, but driving is hard... and, jeff, well, let's just say mommy does everything for him and he's not going to make anything... grr!

anyways, there's a tv program about hawaii. it's starting to look like i won't be able to go there to live, but maybe a vacation. i'm looking to possibly move to austrailia because they have universal healthcare there. if i can prove that i'll be living there for more than 3 months, i qualify. i can handle austrailia.. lol.

anyways, it's nice to meet you mike and kris! i hope everything works out of you! *hugs* stay strong...

Harley

Hello Harley

I hope you get to feeling better. I'm glad that the er doc gave you some hope, that you could find a doctor along the way. It's really rough when your ins does not take care of your needs.
I myself would like to move to Kona on the big island, but the cost of living over there is pretty high and I don't know how we'd do it. But I will still dream and hopefully some day we can save for a yearly trip. Our son's in the University and we want him to study and not hold down a job, so we are working hard to support him. He's very fortunate, as both sets of grandparents put $$ in his act every month too. I'm not able to work anymore, so it gets a little tight, but It will all be worth it, when he graduates from Pharmacy school. We would not support him if he was not so serious about school and if he was just there to party all the time. But he takes care of buisness first and still has a good time doing the college stuff.

It's really hard to continue a close relationship with friends, etc. when you suffer in pain like you do. It makes my heart very sorry for you. Your young and you still need to hang with friends and have those kind of relationships. I thought maybe the spoon theory could give you a better idea of how you could possibly get your friends to understand you better. I'm glad you liked it.

Well, I better get going and try to get dressed and do some more atctivites. It's snowing hard again and the news shows not repreve in sight for another week, so I gotta figure out what to do next.

Take Care and hope your new meds are helping you out.
Betty

Hey, Betty.

I'm going over there in early May it looks like. I just need a serious change in scenery. This just isn't a positive place for me, nobody, even my "family" seems to want to hear me out. My brother was just here and he basically called me a lazy hypochondriac - then told me the "definition of insanity" was (it's a business definition and not the real definition). Freakin' jerk! His ignorance is the worst part of it. He, as well as most people around me, feel that they don't need to even try to understand me and what I'm going through. Everyone here (in this forum) does. That's why I come here. I've already let it drop that I don't want to live anymore, but nobody seems to even try to either believe me or stop me. I don't know about everyone else, but if I had someone who was sick and saying that they didn't want to see their next birthday, I'd take it as a serious thing. I guess everyone's just tired of me.

I'm so glad you get to go out and do things! Snow can be so much fun, at least until it's been around for weeks on end. I'm in Los Angeles where it just rains and the freeways turn into slip'n'slides. The sun is out now, but it's likely not going to be out for long as we have yet another winter storm a blowin' on in from Alaska. lol. Hawaii is looking nicer and nicer every single day - heck, I'd even go to Florida at this point. At least the shuttle is set to launch on the 7th of February.

Anyways, have fun doing whatever it is that you're doing. I'm going to try and finish the dress I'm sewing. Maybe I'll even get to wear it on a beach near Princeville (Kaui) in May.

Peace be with you,
Harley

Harley

Good to hear from you again. I know how tough it must be at home right now. Pretty much all brothers can be like your own brohters, it took my own brothers about 3 years of having to repeat myself, before they finally got it that their sister was chronically ill now and cannot help them and take care of things like she used to.
I'm sorry, I must of misled you, I don't get to go out in the snow, the activities I was talking about was getting dressed, empting the dishwasher, bathing, LOL, not out sledding or any thing like that.
I did ask my husband if he would take me for a walk down the driveway tomorrow, he snow blew our private road with the neighbor and now theres a cleared path out there. If I walk along holding onto his arm & using my cane on the other side, then I think I can keep from falling down. I just need to get some fresh air. I've been inside this house since last thursday and I need to get out side for some type of walk.
If I fall down, I'll be in serious condition. My doctor would want to kill me too.

It's really painful and hurts a great deal when your family does not understand you. They obviously don't have a clue what's wrong with you, so because they don't understand, they may not believe there's anything wrong with you. Pain is subjective and a very personal thing. Iv'e found it to be very lonely at times. I guess that's why I come here to talk with others. When my own pain began, I did not even know there was such a thing as chronic pain, pain clinics or anything like that. It was not until my pain clinic requred me to attend their pain management classes, that I found many others in all sorts of pain conditions. So that was my first eye opener.
I had always thought that if you had pain, you needed to get it fixed and then the pain was gone, I'd been very healthy all my life, so I really did not know much about doctors or navigating my medical plan in order to receive the proper help, so it's been a long, long road.

I wanted to ask you if you'd like to join us in the forum thread called the daily grind?? Was not sure if I had invited you, so at the risk of repeating myself, here it the link to that thread. http://forums.healthcentral.com/discussion/chronic-pain...&r=26210712#26210712
If your not comfortable in this group, then why don't we begin a new thread so you & I can carry on our conversation. I am sorry I just noticed that this was a thread set up for introductions and we have carried on a conversation on it. OOOPS! It's not a huge deal, but I think we really should do one or the other to leave this thread for other introductions. Your probably like me and did not even realize it either. (((((Giggle)))))) I'm supposed to pay attention better than this. Sorry.
Just let me know what you'd like to do and know your welcome with us on the daily grind or you and I can create another thread for our on going conversation. OK

Talk to you tomorrow and let me know what you'd like to do.

Gentle hugs, have a good night, hoping for low pain for you.
Betty

Betty -

haha.. i didn't notice either. i just figured that a chatroom is a chatroom is a chatroom. i'll join the daily grind..

- harley

Thanks Harley

OOOPs!
I don't think we're in too much trouble. ((((Smile))))))

See ya over there. We look forward to your participation

Hugs hope your days is going well.
Betty

Hello everyone. As I learn my way around this site, I would like to tell my story here as well. I have had 3 back surgeries; 2 for the same ruptured disc and the third for a spinal fusion in the same area. With the second surgery, the S1 nerve root membrane tore, I leaked spinal fluid, and it obviously had to be patched. Because of that, I have some atrophy in my lower right calf, numbness in both legs all the way down to my feet, and some loss of muscle function in the arch of my right foot. My pain alternates from side to side. One day, my right side will hurt like crazy, and then the next day, it will be the left. No one can explain this to me. I am so thankful that I don't depend on a cane, nor a wheelchair, hense the name "SoBlest" ("so blessed"). I now enjoy knowing that I have 2 titanium rods, 4 screws, and a cylinder in my back, holding it together. My pain level didn't improve with the fusion but at least I know that it probably won't get any worse.

I am on Kadian 60mg 2 times each day, and 200mg of Topamax 2 times each day for pain. The Kadian gives me moderate relief, however SEVERE constipation. Because of that, I will undergo a Morphine Pump Trial on 2/13/08. I have been told that my constipation issues will improve with the pump. I am quite nervous about the pump and it's risks so I have been comforted reading about all of the postive messages posted on this site. Any words of wisdom are greatly appreciated.

Thanks!

Jo - SoBlest

quote:

Originally posted by SoBlest:
Hello everyone. As I learn my way around this site, I would like to tell my story here as well. I have had 3 back surgeries; 2 for the same ruptured disc and the third for a spinal fusion in the same area. With the second surgery, the S1 nerve root membrane tore, I leaked spinal fluid, and it obviously had to be patched. Because of that, I have some atrophy in my lower right calf, numbness in both legs all the way down to my feet, and some loss of muscle function in the arch of my right foot. My pain alternates from side to side. One day, my right side will hurt like crazy, and then the next day, it will be the left. No one can explain this to me. I am so thankful that I don't depend on a cane, nor a wheelchair, hense the name "SoBlest" ("so blessed"). I now enjoy knowing that I have 2 titanium rods, 4 screws, and a cylinder in my back, holding it together. My pain level didn't improve with the fusion but at least I know that it probably won't get any worse.

I am on Kadian 60mg 2 times each day, and 200mg of Topamax 2 times each day for pain. The Kadian gives me moderate relief, however SEVERE constipation. Because of that, I will undergo a Morphine Pump Trial on 2/13/08. I have been told that my constipation issues will improve with the pump. I am quite nervous about the pump and it's risks so I have been comforted reading about all of the postive messages posted on this site. Any words of wisdom are greatly appreciated.

Thanks!

Jo - SoBlest

Hello Jo=SoBlest

It's great to meet you and welcome to the Chronic pain connection.
If you have any questions about navigating the site, your welcome to to ask me and I'll do my best to get you around. You can also send me a private message with your questions, just click on my name and you'll get a drop down list of choices and just click the invite to private topic and I'll try to get you where ever you need to go.
In the mean time, We are all very happy that you've found us and Welcome!
It's sounds like you've been having some trouble with pain for awhile and probably have already studdied alot too.
Your welcome to join us in the Off topic area of this forum in "The Daily Grind" it's just an ongoing discussion for support and sharing.

Take care, it's great to meet you
Betty