Topic : Living with Chronic Pain

NO BASHING.  No WAY.  You do whatever you need to relieve excruciating physical pain.  It is horrible to be expected to try to "suck up or gut it out".   

Pain interferes with sleep and the ability to function on even a half-way normal basis during the day.   

If medicinal doses of marijuana help you, I wish someone with even half a brain in the Victorian government would recognize this fact and help people who are suffering extreme physical pain and would get a freakin' clue and realize that this is a real problem and needs a real solution.  I SO hope you feel better soon.  I hope the laws change.  BTW, I am 52 with psoriasis.  I feel like I've been tied to the bumper of a car and dragged around a parking lot.   

I hope you feel better.  I SO hope you get over this.  If you want to chat, please contact me at bckly@ptrc@yahoo.com 

I'm new to the boards, too.  I've had migraine  headaches since I was 8.  I'm 47 now.  About 6 years ago they started getting progressively more frequent, and 4 years ago they became daily.  I'm now in pain 24 hours a day. I have headaches in my dreams.  I've done every medication and procedure my pain doctor came up with, from Methodone to Botox to nerve stimulators.  I spent 10 days on a headache ward in a hospital in Chicago.  Nothing really helped.  Because I used to work at a university that doesn't participate in Social Security, when I applied for a disability retirement, the process was much easier and quicker than Social Security.  (I've heard such horror stories about them!) I've been able to get a disability retirement from my employer,  stop working and still get affordable medical coverage.  It's interesting that only when I stopped working did I recognize how truly difficult things had become. 

There is one thing that sometimes helps me.  If you live with chronic pain and your doctor hasn't suggested biofeedback yet, you might want to check into it.  It's not a substite for other avenues of pain relief, but I find that sometimes it does help.  It at least helps me feel like I can have some control over what is going on in my body.  For those of you out there who are religious, studies have found that prayer and biofeedback create similar relaxation states.  And anyone in chronic pain knows how difficult it can be to relax your body.  Even if it doesn't relieve your pain, it can at least temporarly refocus your mind so that you have a small break from feeling it.  The theory is that it is just like sucking on your finger when you bang it with a hammer - you're distracting yourself from one kind of nerve input by creating another kind of nerve input. 

One thing I have a hard time dealing with (that I'd like to hear some feedback on) is the helpful people who want to tell you about the miracle cure that worked for their husband's cousin's stepfather.  After 4 years, I really HAVE tried everything that I believe is medically reliable.  If I haven't tried it, it's probably because I think it's an unproven and unlikely solution.  Total strangers who know my parents and have heard them talk about my problem have come up to me to tell me that if I only tried their solution I'd be cured.  I've done a lot of research. Back problems and headache are the most resistant to treatment because so many things can be involved in the process.  Research in the last 10 years alone has shown that the medical profession knows less than they thought they did about how nerves really work. If I believed your special treatment would work, I'd have already done it.  I really don't need medical advice from total strangers.  And yet, I seem to get it all the time.  I live in a smallish town, and both sides of my family (my parents and my inlaws) know a lot of people.  So, these aren't people I've chosen to confide in - they are just caring people who don't know when to keep their mouths closed.  Though it never occurs to them, it's pretty insulting to me and my intelligence.  I really have done everything I can do, and there is no apparent solution.   I have a hard enough time living with it - I don't need them essentially telling me I haven't tried hard enough.  I don't want to be unkind, but I wish they would butt out.   

I struggle with accepting that I may be this way for the rest of my life.  Right now, that is how it looks.  On bad days I really struggle with seeing the rest of my life in a haze of pain.  On good days I'm thankful for a truly supportive family.  I have a good husband and a loving son.  

For those who are looking, here's a tip for dealing with those around you who may not understand how debilitating pain is.  It really makes it hard to think.  I forget things all the time.  I drop things all the time.  I get frustrated that I don't feel like I'm the one in control of my own body.  I came up with a description that may help you out there to explain to people without chronic pain how your world has shrunk and how difficult it is to get anything done.   I find it particularly appropriate for headaches.  Imagine you are on an airplane.  The plane is full. You are in coach and the plane is hot and cramped.  And YOU are the one with the seat in front of the screaming baby.  Sometimes, it's so loud you can't hear anything else. Now imagine that the baby never stops and the plane never lands.   It may help others imagine how disruptive and frustrating constant pain is - feel free to use it.  

I have been living the summer from hell.  I have fibromyalgia and I have lived from one flare to the next since early spring.  My dr. is sympathetic and my husband also understands.  I take every supplement that I read about that is suppose to help. 

I had been working out at the gym five days a week with a mix of using the treadmill, the machines and free weights coupled with aquabics.  I remember one week feeling really up and begining to "feel" my body as a good thing.  the next Monday my knee gave out while on the treadmill.  I found it difficult to use the machines and I kept dropping the free weights.  My dr. told me to lay off the gym until I felt better but my aquabics were ok.  The next week during an aquabics class I found myself fighting to breath and the chest pain was something else.  Back to the dr.  No more aquabics and more medications.

I started on the regeime I use when my fibro kicks in and eight weeks later I am still in pain, still running out of air and my whole leg hurts instead of my knee.  As I said my Fr. is sympathetic but I  feel really wierd going to the office almost every week, especially when I know that there is realatively little can be done for fibro.

I use meditation, playing my keyboard, painting, gardening, and prayer.  I know there are people my age doing wonderful things but not me.  I am depressed.  I am fat.  I am out of shape.  I am out of hope.

Is there anyone else out there like me.  What do you do?  Please don't tell me to look on the bright side or any other  moronically cherrie euphamisms.

By the way this is one of my good days.

My husband of 22 years became disabled with an odd spinal disease called arachnoiditis (no, it has nothing to do with fear of spiders) It is a disorder or disease where the dura, a spinal covering over the bodys nerves becomes sticky and looks like shattered glass instead of the a smooth elastic nerve that conducts messages to body parts. It started with Meningitis when we were stationed in Guantano Bay, Cuba as a family (before it was a terrorist camp). It gets worse with time. My husband has had to endure no less than 12 surgeries and is on methadone and oxycontin and has an implanted spinal stimulator for pain. 

As of now he is 100% disabled as far as jobs go. I feel I must make a distinction between a legal finding of 100% disabled and being 100% useless. A mans job has alot to do with who he is psychologically and it was a very long time before he could come to grips with the distinction and it still needs enforcing often. It took forever before he realized I hadn't married him for his body and his mind. He is 43 now and his best years are behind him. He has a wheelchair but is resistant to use it for psychological reasons. He is in constant pain and will always be in increasing pain until the day he dies. It is hard to comprehend because I am not in pain and to remember he is in pain 24/7. Sleep, awake etc. It is hard for him to enjoy any moment fully because he is in constant pain. I imagine it is like trying to grocery shop while in hard labor.  

He has over the years come to a different way of life. We have 2 boys and with his handicapped van he went to every single football practice, game, scrimmage, science fair, drama event, and every thing the boys were active in. I am so thankful for that. I was placed in the roll of bread winner for several years. I figure I am lucky. My husband gets to be at all the boys activities and other dads aren't and I figured that if he had died or we had divorced I would have been a single parent and had to work anyway.  We all are very lucky that we can adjust to make this work. I feel deeply, deeply sorry for his pain but we are lucky to still have him. We are SOOOOO thankful for that. The boys are both in college and when they call home they want dad first. 

He has endured more than is required of one human being and it still goes on. We can't ease his pain so we make his life the best we can. It is still excruciating. You have to play the cards you're dealt and we have tried to do the best we can. There isn't any more to do than that. I imagine that there will come a time when the pain remedies will fail and he will be left with the choice of severing his spinal cord from the neck down to stop the pain. We will deal with that too if we have to. Right now we are concerned with doing the best we can with what we have because it could always be worse in some way.   

We love him and he is still the same person I fell in love with in high school. It's like we planned for a trip to Italy. We bought clothes for Italy, studied the customs and bought a house there and then we missed our stop and ended up getting off the plane in Iceland.  We had no house, proper clothing or a visa and we wanted to go to Italy but Iceland will work. Iceland is where the plane landed. Iceland is still a great place to go instead of the plane crashing. 

Dearest Curlyone45, 

My heart just hurts for you and all your pain and suffering you have had to deal with.  Don't you find it amazing that there are humans out there that no matter how bad they are hurting, they still have room to care. I am a person that when I ask "how are you" I want to stay and listen if it's good or bad. I have been home with my daughter off and on because of the RSD, and just found out two days ago that I have no job to go back to. I was freaking out for those two days, wondering how I am going to pay these medical bills, how are we going to put food on the table, ect. you know the drill.  Then I thought, where is that getting me other than gray hair? So I am searching and searching for something I can do at home earn a little cash and be here when Ashley or Andy needs me.  

Stay Strong, find a smile in even the little things and if that is even hard to do on a HIGH pain day, I will share mine all the way from Calie...