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Topic : Living with Chronic Pain
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May 5, 2006, 3:14 pm PDT
 I guess that I'm not ready to get into my complete history just yet. I wanted to read more stories before sharing mine. I've participated to the best of my ability in several politically oriented chronic pain advocacy groups...just trying to help myself and maybe others if possible. Talking to strangers (by that I mean anyone who HASN'T dealt with non-malignant chronic pain) is never easy. Pain is subjective and personal and it is something that everyone seems to believe that they "understand." No one can escape a well lived life with-out managing to experience pain (physical pain in this case) at some point in time. The difference is of course that people typically experience "acute" pain versus chronic.
I'll be back...well wishes for all. |
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May 5, 2006, 3:45 pm PDT
Quote From: kjhamilton Hi again all, Sorry-syntax and grammar suffer w/ migraine problems (I am having one now). My spellling is off on some words --migraine is not spelled "migriane" as I did in my previous post. Sorry for the error and use the first spelling for any Googles or searches. Thanks. Kathryn Hi, I read alot of posts in this section... I myself have chronic back pain, I was hit by a drunk driver almost 4 years ago, she didn't have car ins. and my back was broken along with other injuries... well, 10 months after that, I was hit head on again in another car accident while sitting at a red light!! I was VERY LUCKY that I was not paralized when my back was initially broken, it was a week before my wedding, it was my batchelorette party, and we were on our way to meet my future sister in law. But the second accident is what really did the long term damage... Nothing else was broken, or seen, but the pain increased continuously to the point where I am now on dissability, I take huge amounts of pain meds... I am now only 33, I was 29 when the accident initially happened. I have two boys, one 15 and the other 10, both have had a very difficult time with my ex-husband who has now totally abandoned them. He married a woman who was horrible before my accident, I was in the process of getting remarried. Here's the thing that affected me and upset me the MOST from all of this, other then the constant financial problems and pain that i suffere every day, and it is true when they say you usually end up alone... and when you don't SEE the damage it is very hard for people to understand it. But the hardest thing for me was when I finally woke up in the hospital and realized over a week had gone by, and what exactly happend to me, I was more happy that last week in the hospital then since I have been out. I thought when I woke up WOW, I have been given another chance!!! My doctor said I would be back to normal within a year, even with the rods and screws in my back... but I thought, mabye NOW all the fighting and crap will stop... Life is too short for all this junk!!! Unfortunately, my ex and his wife went to GREAT lengths to use this against me, constantly trying to say that I was unfit, that I was incoherent with my meds, that I would OD which was ALL TOTALLY UNTRUE... I may take alot of meds, but they don't affect me in anyway that people would think. Like I said, my ex ended up just walking away and I guess since they couldn't convince anyone that I was unfit, they decided they didn't want anything to do with the kids at all anymore... but believe me, I was NOT just automatically given the benifit of the doubt from anyone!!! I had trouble with everyone, family, friends... I did get married about 6 months later, but it was a big mistake. I found out he had a HUGE addiction to online pronography, but I think because I was so afraid that I wouldn't find anyone else with my condition and having two kids, and NO INCOME except child support anymore... you can't count on child support!! I married him anyway, we did get a divorce in less then two years though... so now, two divorces... I feel like I am either completely taken advantage of, or totally ignored. Right now, my older son is living with his grandparents... Mainly because of so much stress with depression and so much turmoil in my childrens lives since my first divorce, my youngest son is ADHD, he is very close to me, but has lost his father, and ALL of his fathers side of the family has also completely abandoned him. It breaks my heart... I want to do SO MUCH MORE for him, the physical limitations I have keep me from doing "boys" things with him... he has problems in school, he constantly worries that something else is going to happen to me. I am now with someone else, but as usual, I am dependent on him and I can't STAND that!! He is NOT a very good role model for my son, and he isn't ANYTHING like he portrayed himself to be to me when we first met either. I HATE the fact that I feel like my life is directed by depending on other people, I WANT to depend on myself, I WANT to be able to control my own life with my children, but there is always something in my way... it is so depressing, and frustrating and the chronic pain, that is causing all of this is just killing me emotionally, mentally, and physically. I have done pretty much everything the doctors recommend, somethings they want to hold back from because of my young age, but there isn't anything left at this point... and pain pills are just not working, I HATE taking pills anyway!! I really wish I had someone to talk to, my doctor keeps suggesting I go to counseling, but I just can't get motivated, as many doctors I have to see now, along with my son and his problems... I just have NO ENERGY for it. So, if anyone out there needs to vent or talk about things I would be more then happy to listen and be able to talk to someone who truely understands!!! Thanks all, and I know there are many people out there worse then me, but no matter what, we have all had our lives change completely, and I am having a very hard time getting used to this new lifestyle... It is just sometimes too difficult to handle and deal with. Thanks for listening... |
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May 5, 2006, 4:25 pm PDT
Quote From: lavina60 I also suffer from lower back pain, pain in left buttocks and leg. The diagnosis was Spinal Stenosis. My doc wants me to go to physical therapy. Now that sounds painful!!
You said that you have been going to an accupuncturist. That sounds interesting. Now that you are pain free, do you still go to the accupuncturist? If the pain would go away, I would go forever..
Any advice on how to choose one? I live in the Phoenix Az area.
Any help would be GREATLY appreciated.
Thanks, Lavina Accupuncture? Thanks! I went the route with prescription drug addiction. No more prescription drugs, NO EXCEPTIONS! I'm really happy with the holistic approach to healing, and I've been considering accupuncture. I recently saw a stroke victim who is being treated with accupuncture. I've been looking for insurance that covers accupuncture and other alternative treatments. I'm glad you had such good results. It gives so much hope. I get through my pain, fine. And life is good. But I'd give everything for a day without pain. I'm looking forward to trying it. Thanks! And keep up the great recovery! |
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May 5, 2006, 5:03 pm PDT
Quote From: lavina60 I also suffer from lower back pain, pain in left buttocks and leg. The diagnosis was Spinal Stenosis. My doc wants me to go to physical therapy. Now that sounds painful!!
You said that you have been going to an accupuncturist. That sounds interesting. Now that you are pain free, do you still go to the accupuncturist? If the pain would go away, I would go forever..
Any advice on how to choose one? I live in the Phoenix Az area.
Any help would be GREATLY appreciated.
Thanks, Lavina I am so glad YOU responded back. When I read your description of the lower back pain and the left buttocks it got my attention and encouraged me to write. I haven't seen my accupucturist in 1 year. As a matter of fact I just left him a message yesterday telling him how great I feel and to thank him again. I have already thanked him so much because of how great it feels to not have to live without that pain. When he calls me back I will ask him how to find someone good in your area. I hope that helps. |
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May 5, 2006, 5:08 pm PDT
Quote From: soni_g Accupuncture? Thanks! I went the route with prescription drug addiction. No more prescription drugs, NO EXCEPTIONS! I'm really happy with the holistic approach to healing, and I've been considering accupuncture. I recently saw a stroke victim who is being treated with accupuncture. I've been looking for insurance that covers accupuncture and other alternative treatments. I'm glad you had such good results. It gives so much hope. I get through my pain, fine. And life is good. But I'd give everything for a day without pain. I'm looking forward to trying it. Thanks! And keep up the great recovery! Thank you for the kind words. I really recommend this to anyone that has tried everything and is done with medications. I didn't have insurance to cover it but it was worth every penny. There is hope and I hope you find health ! I also tried yoga along with the treatments and that really helped with the stress of living with pain. Now I just enjoy it for the peace it gives me. I wish you well. Kathleen |
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May 5, 2006, 5:31 pm PDT
Hi. I too suffer with chronic pain. I have Fibromyalgia, Ostearthritis, and pain in my shoulder and knees due to being rear-ended by a drunk driver. My shoulder, collarbone, and knee were broken and some other smaller injuries. It is such a chore to even get out of bed but it is also painful to stay in bed. I have no cartilage in my knees so I am always falling and am not a good candidate for knee replacement. I am severly depressed and tired of taking so many pills. I have to force myself to go anywhere. It is such a lot of work just to get ready. I know there are many out there that are worse than me and I would like to know how you cope every day. Heidi |
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May 5, 2006, 5:41 pm PDT
Quote From: soni_g Chronic pain sucks, but the inside does affect the outside, and attitude is everything. I had my first knee surgery at 27. For the first 3 days after surgery, I couldn't move my leg. Scared the dickens out of me! Doc said I'd be in a wheelchair at 35. Two months later I was diagnosed with the same condition in the other knee, and chose to have surgery immediately. I worked to strengthen that leg and had surgery a month after diagnosis. I was out of recovery in 20 minutes, and doing straight leg lifts within the first 10 minutes. At that point, the doctor told me he had no idea what would happen. I blew his theory. It went okay, until my legs started getting weaker and weaker, and my doctor kept telling me it was in my head. Well, my head was telling me that I couldn't walk! So he gave me a pill to help me. I should have realized that if he didn't believe there was anything wrong, he wouldn't be picky about the pills. I was allergic! I awoke in the morning with a respiratory problem. I touched my face, but felt nothing. I looked in the mirror, and I was a monster! I could have robbed a bank and they would never have found me, but since I couldn't breathe that seemed to be an unreasonable thing to do. My eyes were indistinguishable and my neck was swelling, choking off my air. I called my dad to rush me to the emergency room where they got me as I started to choke. The doctor excused his actions, and I didn't know any better, so I believed him. But I still couldn't walk. Then I noticed something on 60 Minutes about a DMSO experimental program at a research facility not far from me. I fit the patient description, but my doctor had to refer me. He said he could do nothing more, so he did. I was accepted and given the experimental treatment. It was amazing. It worked. I smelled like a fish market and nobody wanted to be my friend. But I could walk. In fact, I enjoyed it so much that when I went back, I couldn't walk. The doctor said, "Oh, dear. I was sure this would help." I told him what I had done in the two weeks since he'd seen me, and he said he would be more careful in his definition of "take it slowly." It worked me through the pain to where I could strengthen my legs again. But meanwhile, I was still falling occasionally, but mostly in the middle of panic attacks, which were increasing to frightening proportions. I had enough of doctors telling me that I was having a nervous breakdown. I would tell them I'd been through worse and didn't have breakdowns, this wasn't a breakdown! I finally found a doctor who took his time, and I was diagnosed with bipolar disorder. Finally, a name! Of course, I was an outcast, because this meant I was crazy. Funny thing was, that with the medication, it was the first time in my life I'd felt sane! But I kept falling, and my right ankle kept breaking. Tore cartilage, the doctors didn't look at that, and I spent months in a walking cast until I finally got fed up with my HMO and went to an HMO down the street. They diagnosed me, so I went back to my own, telling them they had one last chance to find out what was wrong. Of course, they stuck to their guns, so I went to the other guy for surgery. The doctor performing the surgery said my ankle had been set for the clean break on the outside, but they had ignored the compound fracture on the inside, hadn't set the bone, and it would break again. They asked to be allowed to break it and reset. I told them that I'd been doing such a good job of breaking it for free that it didn't make much sense to pay them a couple thousand to do it for me! I got the bill and then handed my HMO the bill. They said they couldn't pay, so I asked them if they'd like to meet with my attorney. I was bluffing, but they didn't know it, and they agreed to pay the bill. But the pain kept coming back, and 9 months after the surgery, I broke it again. I had to relocate for family reasons which seemed valid at the time, and I was transferred to the local facility of the HMO. They took me out of the cast and I continued my life. But I couldn't walk. I went to an orthopedic who said to return to the doctor who removed my cast. I had no insurance, so they wouldn't work with me. And the clinic had removed the cast too soon. The hardware they'd put in my leg for a minimum of 4 years, had not set and it was falling out. By the time the HMO worked me in to remove the hardware, the pins were sticking out of my ankle! Needless to say, I thanked them for the free surgery and told them what to do with the hardware! This caused not only extreme arthritis, but it was affecting my bipolar. I kept on, having no choice, then about 8 years ago, developed weird tics. My doctor said it was dyskensia, then Parkinson's Tremors, then "I don't know." Meanwhile, I was becoming a bobble-head doll! It took over 1-1/2 years for them to figure out that I had blepheraspasms. During that time, my face contorted until it hurt, I couldn't see because I couldn't open my eyes, my entire body would shake until I ached all over. I became a hermit. I tried to work, but there was nothing I could do. I always lost my job. Kindest reason was, "We can't have that face in this office." Boy, talk about losing self-esteem! When the diagnosis was made, I started the treatment, 6 injections of medical botox into the bone surrounding each eye, every 4-6 months. It seemed to work and I continued on with my life. Then I fell while putting a piece of furniture together. I laughed, thinking I'd just hurt my pride, but about a week later I couldn't stand up. I thought I just needed a little adjustment, so I went to a chiropractor. Xrays showed that I'd slipped 2 disks, but it was a good thing. Turns out my spine had been weakened by adult onset scoliosis, which apparently had come on with the spasms, a neurological condition. I couldn't afford to keep the treatments up and the back got worse. I plugged down pain pills and went on with it. A few months later, I tripped while walking through debris that had piled up after a hurricane (my timing has always been off) and I landed on both knees on concrete. I didn't have a doctor or insurance, so kept going. I finally went to a doctor a few weeks later when the pain became unbearable. Xrays showed I'd shattered both kneecaps, but they could do nothing short of replacing them, which they would not do because I had no insurance. They said to keep going until the pain got so bad there were no other choices. The pain just got worse, but at least I knew what I was fighting. In a way, I was blessed to have had so many things go wrong, because I'd learned the importance of strenthening. The bipolar was what finally did me in. But the arthritis had spread from my feet to my middle-back. Ouch! Now on top of the torn cartilage which remains, the shattered kneecaps, the arthritis, scoliosis, temperamental disk, spasms and bipolar, I developed a tear in my rotator cuff. Again, no insurance, no doctor. But I had gone to a doctor about 2 years ago who prescribed pain pills, good old Vicodin. I took them for 2 days and returned the rest after having spent the day returning those first two! When the mood disorders came on, and I learned I had developed hypothyroidism, I went to a doctor. He was lacking totally in bedside manner, and accused me of whining and moaning when others had it worse! Boy, did I know that. So I had another fight on my hands. He wanted to charge me a phenominal amount for the abuse, and I was now on a fixed income. I won. Then I went to my old doctor, thinking he could help me adjust. He wanted to put me on heavy-duty prescription pain pills, and I told him no. He said I couldn't hurt much. I explained my feelings. First, I am in 24/7 agony, and when a pain pill wears off, it only makes it feel worse. I don't need to feel worse. Second, I tried a pain pill and I could do nothing that didn't involve a bucket and a cold rag! Third, I have enough wrong that I don't need to add addiction to prescription medication to it. Then I watched my mother die from cancer. She was an antagonistic old gal, full of fight. Then I realized that fight is what she gave me! So I changed my plan of attack. I now use over-the-counter pain meds, such as generic Alleve only if I must do something which could be affected by the pain. I changed my diet (the hardest part of this) and am working to keep only healthy foods in here. I started meditation which actually works extremely well. I removed as much stress as possible and work out in a swim pool at least 3 times a week. It is not only increased mobility, but the water is relaxing and soothing. Once I get in, it's hard to get out! I walk whenever possible, and have a little portable cycle that I use when I'm at my computer or watching the boob tube. I've just started with resistance training at the local Y to strengthen my muscles. I haven't fallen down in almost a year now, which is a record. I now take regular steps instead of baby steps. I still hurt, sometimes horribly, but I have to remember that I'm aiming for a healthier body which should result in less pain. My right cuff is still a bear, but I try to remember that I'm here! And nothing lasts forever. I will get it fixed when the insurance is here. Meanwhile, it trying to manage the pain my life is becoming so much better. It's forcing me to look at all of me and everything in my life. So when it hurts, I try to remember the good things it's done. It still hurts, but it doesn't make me feel quite as sorry for myself. I still believe that if I keep up with this regimen, the pain will lessen in time. Meanwhile, I laugh a lot and try not to take myself too seriously. I love music, and that centers me. I am my project, and I bless the pain because it's making me a better person. See, there's always a better way to look at things. But the word, "OUCH" is still very much in my vocabulary! Wow, that totally amazes me how you went through one thing after another!! I understand the ins. problems!!!! In my accident, the first lady that hit me, the drunk driver, she didn't have ins. so it has caused me SEVER FINANCIAL PROBLEMS!! My credit is ruined now because of all the medical bills and just a couple other things that were in direct result from this problem... but like in my first post on this site about what put me in this condition... I am on a very heavy dose of pain meds... in fact, I have been almost driving myself crazy recently thinking about it, if I should ask the doctor to take me off of them or not... how is this going to affect my life in the future? I am only 33 now, it's been almost 4 years since the first initial accident... there was two. I've done just about everything they can do at the pain center, except for a few things that the doctor said he doesn't want to do because I am so young, I've tried a couple other things with no positive results... but because I am in a very difficult position financially, and with someone that makes things worse then better I decided that I am going to wait. I know I have a prescription medication addiction, there is no way I can take all these meds for this long and NOT have it, ya know!! But I NEVER take more then I should and in most cases, I don't take the full dosage I am supposed to take. I have a hard time taking pills to begin with, sometimes I forget to take them till the pain sets in even worse and by then it is too late, once it gets to the point that I have no relief the meds don't help much... I figure I am gonna have to either be hospitalized, or put in some kind of rehab to completely be free of them. And it scares me quite a bit... I do NOT want to have the "addiction" after they are not needed, and believe me, I am still holding out for some kind of procedure that will WORK for once!!! I ABSOLUTELY don't want to be "labeled" as someone who is a "druggy". I look at that as someone who only takes the pills for "recreational" purposes... ya know what I mean? People who actually get that "high" affect with them. I haven't had that feeling for years now, no matter what they switch me to actually... I've heard people use that term... its funny how people would come out of the woodwork with excuses why they would ask to "borrow" a pill here and there!!! After a while I was like, no, I need them for myself, and I am NOT going to contribute to someone else's problem... only because I don't want to feel responsible for "helping" someone continue abusing that kind of stuff. It was different when my friends and I all had gotten out of the hospital and some of them still had residual pain here and there, course, I was HORRIBLY worse then everyone else, but I didn't deny they had lingering pains here and there. Hmm, I feel like I got off track a bit!! My cousin was in a car accident a couple years ago and broke her hip, she is the same age as me, she is off pain meds and went to an herbalistic type treatment and medications. I would LOVE to learn the relaxation techniques that I've heard people talk about, I seriously need help with relaxing and relieving my stress, I am bombarded with extreme stress on a daily basis with my boyfriend, physical problems, depression, and my youngest sons ADHD. He is a very loving, but very demanding child when it comes to care. Some days I am totally at my wits end, and it is taking forever to get him into help, my family doctor gave me a script for xanax to get me through till he gets into treatment, unfortunately all it does is put me to sleep and I can NOT afford to sleep my days away, I want to LIVE!!! I want to ENJOY the life I have, we only get ONE LIFE, and I consider myself lucky to have gotten a second chance, I very well should have been paralyzed after what happened to my back, two disks were shattered, I was basically being held together by my top and bottom half by my spinal cord!!! I remember the crash, I remember a brief passing out/waking up after seeing the headlights, I remember everyone in the car talking and calling my name, I even called 911 from my cell phone and called my mom, the paramedics came when I was on the phone with my mom... but when they told me to let go of the seat so they can get me out of the car, the pain was SO EXCRUCIATING that is when I started losing conscious memories... I lost a week and a half basically, I briefly remember snap shots of memories of that time, but hardly any of it... because I was supposed to be married the next weekend a few family members were already coming into town, so they were there to see me in the hospital after two major surgeries, along with some more scary moments of other things that I have NO MEMORY of what-so-ever... And get this, my fiance wanted to STILL marry me on our supposed wedding day, course, no one really liked him to begin with, so my father asked our pastor to PLEASE SAY NO to him, he didn't want me getting married and not remembering it... but the second week, after I woke up, or I should stay remember things happening, he started cheating on the computer... and that is what he did all the time when I got out of the hospital... well that is a long story... it was extremely degrading... anyway, this is too long, it's been a MISERABLE ROAD!!! I just want to be self reliant and dependent on MYSELF!!! I am tired of people telling me they love me but then treating me like CRAP!! Sometimes I think people are using me because they think I am going to be getting some kind of big settlement or something, so far, I have gotten NOTHING. In the first accident, the other three girls got their settlements, they didn't have even CLOSE to the injuries I got, all together, theirs doesn't even measure up to what I have suffered, yet they all got money, I have NOTHING!! The second accident, we are going to trial in June or July this year. That happened in 03, so it has been almost 3 years may 23d. No one in my family and friends has any idea how horrible this has been and all I seem to get is criticism for bad decisions, they think it is so easy to just live off of disability and welfare... I am NOT that kind of person. I have had to get that in the past, but I got myself out of it, now, I can't just go and get whatever job I want anymore, I can't just DO whatever I want anymore... after all these years you would think I could get past this... I honestly think it is because of the total lack of positive and dependable support... but that isn't just an excuse, I am not trying to make excuses, I know I have made mistakes, and they are all because I had to make rash decisions based on desperate circumstances. I'm tired, frustrated, and SICK of being in PAIN ALL THE TIME!!! I just want to be able to care for myself, my children, and not have to depend on someone who keeps us down because I have no where else to go. I'm sorry this was so long, I guess I just spilled all kinds of depressing thoughts all over the place here!!! Again, thanks for reading and listening if you got this far down. ha ha |
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May 5, 2006, 5:50 pm PDT
I am 45 yrs old, but feel 100. I was diagnosed with Lupus a little over 2 yrs. ago. I use to work full time and at times even had a part time job at the same time. I coached a girls softball team. Took care of my disabled daughter. I just lived really lived life. Well not anymore. I lost my job and due to that was forced to sell my home before foreclosure. It was my home of 14 yrs. I stay home all day now and I am very lonely. I have no family with the exception of my daughter. I am suffering now from severe depression. When I lost my home I had not yet been diagnosed, I was invited to move in with my boyfriend, that relatiopnship is really stressed. As he now totally supports me and my daughter completely with no sex at all My disease has gotten alot worse and now I feel as if he would like me to go but feels sorry for me knowing I have no where to go. I have no money of my own as I am awaiting my disability hearing. I don't get any medical care or medication because I have no money and can't get any insurance, even if I had money. Since he supports us totally I don't ask for anything in extra just the bare essentials for living. There are days I don't even care if I live. If it wasn't for my daughter I wouldn't be here. I just need someone to talk to who might understand and have some advise. There is more but that is a mouth full for now. |
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May 5, 2006, 5:59 pm PDT
Hi All, This is my first time here, saw the cronic pain and had to write, I have Fibromyalgia and have been on disability for over 5 years and hate it. To wake every morning in such pain it takes all you have to get out of bed never mind walk to the bathroom is getting to be more then i can bare at times, yes i have a few what some would call good days but most i just have to bite my tongue and go. nobody understand this, in fact i believe i was the first in Vermont to go on disability for this awful syndrome, for those of you that don't know what it is, it will not kill you , you only wish it did. My family hasent a clue what i go thru and chooses not to even try to understand, I guess if you cant see it it shouldnt hurt. 2 winters ago i was lucky if i was out of bed a total of a month. My husband of 27 years trys to do his best to do what he can do but its a constand throw in my face of what i cant do and he has to, from helping to pay bills to cooking dinners, this last winter because i was sitting home all the time i was asked to go stay with my grammother of 91 years old as she fell and no longer could live alone and didnt want to go into a nursing home, I have been living with her during the week beginning in Febuary, it has done me alot of good in some ways but it others its torn me apart. I can go on forever with so many of my issues but i am sure you all have no desire to hear them. I take narcotics on a daily basis and would love to stop but if i did then i have to live with even more pain then i do with them and to be honest i couldnt do it. The main reason I am writing here is a couple really one, dont judge people just because you cant see a persons pain dosen't mean there isent any and its the first time i have read anyone on the Dr Phill chat that has it, so to you all out there that is going thru this with me hang in there and remember your not alone. oh and by the way i hate the saying there is always somebody out there worse then you are. thanks all |
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May 5, 2006, 7:32 pm PDT
Hi, I'm new to this website and have read most of the stories on here. I am on disability and have been trying to not take the recommended RA medicines for the last two years but the pain is getting to me again. I go back to the doctor this month and I know he will want to put me on meds again. I really don't want to but I don't know what else to do. My intern says that I am bone on bone in both hip joints and knees. I live by myself and will have to arrange care and all that goes with that. I just thought maybe talking to other people with the same problems would help. thanks for listening |
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