Topic : Living with Chronic Pain

I am grateful to find this message board...part of the difficulty with chronic pain is that it can make you feel lonely and isolated.  I've had pain and fatigue for a long time, but about four years ago I had massive blood clots in my left leg which required venoplasty and a stent.  The pain has been unrelenting and the fatigue overwhelming since then.  After being referred to internists, radiologists, pain specialists...I've found an excellent nurse practioner who is very helpful simply because she listens and believes me. 

  

I have learned a couple of things about the pain.  The first is that I spent most of my life working hard, denying myself, meeting other peoples' expectations and not dealing with emotional pain.  That has taken a physical toll, in that I simply do not have reserves left to deal with any extra stress.  Managing stress has become very important to managing my life. 

  

The second is that nobody is the same, and different things work for different people.  I've tried narcotics, neurontin, lidoderm and a bunch of other stuff.  None of them help much.  Tylenol helps a little, and ibuprofen helps a little more.  I'm not supposed to take ibuprofen because I'm taking blood thinners, but on a bad day I take it anyway.  Heat helps.  Warm baths help.  Mild exercise helps the pain but makes the fatigue worse.  I also have chronic depression, and if I start getting depressed the pain is harder to deal with.  Life has become a matter of balance.  Of doing everything I can to take good care of myself without overdoing and pushing myself like I used to do. 

  

I'm also learning to go with the flow.  On a bad pain day, I stay home and rest.  On a bad fatigue day, I take a nap.  On good days, I do more.  That means being flexible because I don't know until I get going how the day will be. 

  

The most important thing I've learned is the importance of good friends and depending on God.  It is true, most people don't want to hear how I am really feeling on any given day.  God doesn't mind, though.  Prayer and being involved with other people are what get me through a lot of days.   

  

I have one good friend that I pray with every day.  We have committed to be absolutely truthful with each other, and we tell each other every day how we are doing physically, emotionally, relationally and spiritually.  She is the one person that I tell honestly every day exactly how I am feeling.   I tell my husband in more general terms--I'm having a good day or a bad day.  My closest friends know I have bad days and understand if I cancel an appointment with them, but I don't tell them how I'm feeling. 

  

I do not like living with pain, fatigue and depression, but it is what it is.  I have friends who live with alcoholic or abusive spouses, friends who have kids they are worried to death about, and friends who have had husbands or children die.  I'm trying not to let my particular cross overwhelm me and to do my best to live well with it. 

  

My heart goes out to all of us who struggle with this.  Everybody's circumstance is different, and it is harder for some than others...I can't even imagine how I would handle it if I had little kids to care for.  You are all courageous and stronger than you realize...weaker people collapse under the pain you deal with every day.  My hat is off to you. 

   WOW... I have read many of the stories here and my heart goes out to all of you suffering with pain.  I was diagnosed with Fibromyalgia when I was 15 after I had E Coli poinsoning.  Because of the poisoning, I developed Fibromyalgia, Chronic Fatigue, and Chronic Pain, which all seem to go hand in hand with Fibro.  I can tell you that anyone who has Fibro, especially in the first few years, is in A LOT of pain.  Daily migraines, joint pain, body and muscle aches, extreme fatigue... the list goes on.   

   I missed most of my soph, jr, and senior years of high school, in and out of the docs, hospital, and mostly laying in bed alone.  It really sucks.  As time went on, I got a little better.  I think by my 4th year, I was 50% of who I use to be... which was a GREAT improvement.  I had to deal a lot with acceptance b/c I was a varsity swimmer and biked 3-5 miles a day.   All that changed with Fibro.  It sucked, but it was a very humbling experience for me.  I can now relate to a lot of people that I would have never been able to connect with.   And, if that was not enough, I was beaten by my parents as I tried to move out.  The results were a severly torn muscle in my shoulder, pinched nerves and torn tendons in my back.  Though a horrible experience, this too has helped me to branch out and help others who have been in my place and really understand their struggles. 

   Now I have heart issues... my HR goes up over 200 beats per minute, which is really bad.  Just to walk to class, I get winded and often have to rest with shooting pains.  I am trying to take it easy but now I am gaining weight and have not been able to work in 2 weeks and have missed a lot of class.  I had to go to the hospital last week because I passed out and b/c my heart rate was so high. 

   So... I understand a lot of people on this board.  I have been to countless doctors and have taken countless medications.  I got to a point that I took myself off of many meds and only take some asthma meds and soma for my severe back pain.  I am only 23... I don't want to be taking 13 pills 2 or 3 times a day like I was a few years ago!  I am doing OK without all the drugs.  Still in daily pain and tired a lot... I don't know if I will ever be 100% again.  I don't even know what it is like to not be in pain.  But, I refuse not to live.  I am taking a full load of classes and work up to 30 hours a week (usually).  So, it is doable... but you have to be determined.  Don't give up or give in to the pain.  Want more from your life.  And asking for God's help, grace, and mercy doesn't hurt either!  If I couldn't cry out to Him, I would be totally hopeless. 

Where do you get negative Ion Clothes or Blankets?  I did a search online and it didn't come up with anything that made sense.   

Thank you! 

Somehow my emote (the little icon on the left) said that I was angry in my last post... I am not angry... I don't know how that happened.  I would say right now I am contemplative and hopeful.  Contemplative about my own life.. past, present ,and future, and hopeful that I can lead a better, healthier life in the years to come.  Also hopeful that anyone who reads my message will get some of their own hope or just knowledge that there others of us out there going through the same types of suffering and dealing with our pain.  Just try to think positive and know that tomorrow may be a better day.  (Sometimes that is all we can hold onto!)

i was in a mva which left me in chronic pain due to disc damage, ligament and neck damage, si joint damage, brain damage and i also now have fibromyalgia. every day my hip moves out of place and has to be popped back in and my tailbone shifts out also. i am permanently disabled because of all this. But what is truly killing me is having no friends because I can't leave the house that often and my husband walked out because he wants to constantly go out and thinks nothing of  leaving me at home on my bad days to take care of the kids myself. I am crying just writing this. It ended my dancing career which was my passion. i am sooo depressed. I am in so much pain i can't describe it to people. i do my best to keep house, etc. , but the thing with not knowing anyone and my husband telling me to " get a life" is killing me. thanks for listening.

Hi, I suffer with Chronic Pain, and have been for almost 10 years now. I was injured at work on July 7,1996 and have had pain ever since. I suffer with several things due to my injury, TOS- Thoracic Outlet Syndrome, Chronic Pain, Migranes, Severe Nerve Damage, Depression, RSD- NeuroMuscular Degeneration in my fingers, Carpal Tunnel, and the list goes on. I have been to Denver to the Top doctor in the states to Philadelphia and Baltimore to visit other doctors. I have several doctors that I see on a regular basis. As far as the tests that I have had, it's more like which ones haven't I had. I have had MRIs, EMGs,Nerve Conduction tests, Delleon Tests, nerve blocks, both in the base of the neck and spinal. There have been several injections into my shoulder and close ares of the injury. The amount of medications I have taken and still continue to take are enourmous. I am really tired of being sick from them but they help me to deal with the pain. The doctors tell me that I need 5 to 6 more surgeries for my problems in my shoulder. I don't want any more surgeries, but then I try to think positive that maybe one of them will be just what I need. I lucked out and have great doctors which I think helps me with the problems I have. I dealing with my condition I have found that when I take myself away from my injury I feel better. In order to do that I will do artwork, read a good book, or do some other things I like to do, like garden in the Summer. By putting myself into what I am doing it helps take me away from the pain and suffering,even if it's only for a short time. I went from 100% of a person to less then 50%. That is not me so I had to get myself back. I went to school and earned 2 college degrees, making the Dean's list several times. I WILL NOT let this injury and pain get to me. I live with it everyday, but I don't think about it everyday. There are good days and then there are bad, but what I hate are the really bad ones.Those who have chronic pain deal with alot and I'm sure that we all think the same, if there's a cure for us out there let me find it. I can't deal with this, even though we have learned to do just that.From what you have read you might think that I am an old person-wrong! I was injured at age 29. I worked for a well known music company and worked 12 hour shifts 4 days on/off. I would work sometimes 5 and 6 days so that I could provide for my son. My injury was caused by repeatative motion. This can take either a severe injury or a simple wrong movement like mine. I hope that I can help someone that may be dealing with the same thing or just needs to talk to someone different. I know that this affect not only ourselves, but our loved ones, friends and those around us. Let's stick together.

Hi Mel,  

I know what you are going through with your RSD, your depression and your son. I to have RSD in my left hand which gets me upset because it causes my fingers to flatten, my nails to fall off, and just causes me to be embarassed all of the time. I was hurt at 29 and now I'm 38. My son is now 14 and still has a hard time dealing with my condition. There are times that my pain is sooooo bad that I can't even bet moving but when it comes to him, the pain has to take a back seat. I will be in the worst pain but my son and his events comes first. I have gone for pain management but they are only like a bandage, temporary. We have to learn to fine what helps us the best, sometimes on our own.I have a small sponge ball that I use to keep the blood flow moving for my hand, maybe there is something simpleout there that can help. I get bad in the Winter months because of the depression and the entire ordeal. They do have meds for BiPolar if you would like to try them or get the special uv lamp that helps so that your body doesn't lake the light that causes BiPolar. Check with your doctor and see what he/she offers for help. If you would like to talk more about this condition, or just want to talk in general, please email me. Best of wishes and my thoughts with prayers go out to you. 

The topic, Living With Chronic Pain, caught my attention, because I too live with constant pain. And when I read your story I had to write and tell you I'm sorry, and that I understand how you feel, because I too struggle with loneliness and depression.  I used to have a ton of energy and friends, now I limite my activity because "overdoing it" comes at such a high cost - more pain!! And because I want to avoid the pain, then I avoid the things that trigger it, which often times means spending time alone.  

  

The good news is this, you still have ' you ' to keep you company! And no one understands what you're going through better than YOU - so remember that the next time you don't think you have anyone to talk to, and who understands, because you do. And pray, because God cares more. Take care...and here's a hug! 

  

  

I'll say a daily prayer for you too.  I'm so sorry you're suffering.  No one in this country should have to.  It was never even a consideration for me ten years ago.  If there is ever anything I can do to to help you, please call me and I will do anything I can for you. 

  

Sincerely,  

Pat  

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