Weddingbee boards

I thought maybe we could start a thread for anyone out there who knows someone with or is someone with chronic pain. I started going to a support group and so far I have a really good feeling about it so I thought I'd give it a shot on the bee :)

I live with chronic pain and I definitely know that it can be both physically and mentally exhausting. Trying to balance a job, school, (maybe some of you have children)... it all becomes very difficult. I'm just at a point right now where I feel like I am constantly trying to catch up on things in my life because I end up missing so much when I am stuck in bed all day. I have endometriosis and PCOS, so I have chronic pelvic pain. All pain is different - mine comes in waves. I can be fine and then I can be in excruciating pain from cramps due to the endo or rupturing of cysts. My body's response to the pain is often to lose consciousness so I am also struggling with the fear of actually going out in public because I am always afraid it is going to happen while I'm away from home.

I struggle with how to communicate with people about it (my boss, my professors, etc)... I really don't talk very much about it to friends or even family besides my husband. I worry about whether or not I will be able to have children, if I am going to be able to make it through school or whether I will have to drop out like I was forced to in the past.

All in all it is hard to live with and I know there are a ton of different types of chronic pain out there and some with more support than others. So if anyone else would like to share some of their experiences/issues maybe we can help each other out. I know there are times when I definitely need to vent about it.

I have a disaligned knee with scar tissue following surgery when I tore it up playing softball in high school.  A lot of doctors and people have discredited the pain because it's not a disease or formally diagnosed thing like other chronic syndromes, but I finally found a doctor that was able to recognize what my problem has been for years.  I also found a physical therapist who took it seriously and was able to give me some real results.  Granted, they're not solutions to the problem, but the exercises do help with daily functioning and helped me to be able to wear heels at the wedding.

@beekiss2: Yes! I would definitely get checked out for endo and PCOS if I were you. It seems like I had to really push my doctor into understanding that something just was way wrong. Then they did a laparoscopy and found the endo through that surgery. After that the pain went away but it came back with full force so I'm currently on lupron but I seem to be doing worse on this than I was on the continuous birth control.

I completely know what you mean by being uncomfortable about discussing it with friends. They know in general what it is, but they definitely don't know the severity of it.

Doctors also told me that stress has something to do with the pain as well, just like your aunt. However I did take a semester off from school and work to try to deal with it all and destress myself and even then I didn't have things to be stressed out about but it was still really severe/constant. So I'm always trying to figure out better ways to manage.

@beekiss2: I completely understand. Before I knew what it was that I have I always struggled because I would try to explain to everyone what it was like but until they saw it first hand I always felt like they thought I was exaggerating the symptoms. I had a tough time with my job for example, but one day they found me passed out in the bathroom and just in a ton of pain and after that they understood what it was I deal with. Doctors were often the same. You see the doctors for 15 minutes and you may be fine during that time, however you know that it is something you deal with way beyond the 15 minutes they give you.

After I found out post surgery that it was endo I read up online and it is actually an experience that a lot of people have. A lot of people have to push their doctors into understanding, which is unfortunate but I wish I would have been more demanding with them - maybe then it wouldn't have taken so many years to get a diagnosis.

My MIL has struggled with chronic pain, and it's definitely gotten worse (from an outsider's perspective) over the last few years.  I have really mixed feelings about all it.  I know she struggles with pain, but I don't think her doctors are helping her anymore by continuing to prescribe a lot of narcotics.  I see her struggles (and the struggles that the rest of the family has because of it) and it's really sad.  She is truly addicted to prescription pain medications, and it's to the point where she is unsafe to herself and others.  For example, she will light a cigarette and then pass out and therefore have burns on her clothing/herself/furniture.  She was completely out of it an my bridal shower and left about 10 minutes after arriving.  She's tried to overdose using the medications several times.  I wish she would seek help (outside of her current doctors who keep prescribing more medication), but she doesn't think she has a problem.

It's nice to read other people's perspectives on chronic pain so that I have a better understanding of what she is going through.

@EvaBostonTerrier: That is something that I worry about myself. When you go see a doctor because of this they do prescribe the narcotics to get you through and that is about all they really offer. I do take narcotics to get myself through severe episodes, but I am completely aware that they can be highly addictive. That is why I sought out a support group that is in connection with a pain clinic. The pain clinic offers different approaches to managing it all - physical therapy, acupuncture, meditation...  I haven't been to it yet but I'm excited to give it a try because you can't really function when you are on vicodin or whatever every day. This is something I tried to explain to the doctors too - that I needed them to direct me toward something that would allow me to function because often when I take the vicodin for example I just end up getting knocked out and sleeping for 6 hours. Their solution? Prescribe a slightly lesser narcotic!

@sassy411: Yeah I have tried Tramadol. It did work, but the higher mg did the same thing - it knocked me out cold. My gyno did prescribe me a lower dose of it but when I ended up in the ER from it one day they prescribed me vicodin and when I asked for the tramadol instead they told me that they don't prescribe tramadol for "that kind of pain". Made no sense to me. I talked to my gyno about it later and she said that they may have thought I was drug seeking by specially requesting a type of drug. Which is a whole other issue that people like myself have with physicians. There are a few times when my husband has taken me to the hospital because it just scares him when I pass out from it and am sort of delirious from the pain - sometimes when I am in the ER I am self conscious because even though they will give you morphine or whatever to help you, I have sometimes got the impression that they think I am a druggie. So at times it sucks because on days when I am desperate I refuse to let my husband take me to the hospital because I am scared that they think I'm just making it up or something.

@soonerpsych: I'm so glad you found something that is working for you! I am excited to try the physical therapy. I think it will help a lot with the body aches that I have as a result from my severe cramping/cyst rupturing episodes.

@beekiss2: Totally agree. I wouldn't discredit CFS either and it is unfortunate that many doctors do and a lot of times just assume that it is "all in the head". Feeling exhausted all the time is such a hard thing to deal with - physically and mentally.