[rsd324]

I'm new to this forum...actually new to this site. I've been having pain for 9 years and it's like no one believes me. I am the type of person who doesn't complain much and I'd rather listen to everyone elses problems than have them deal with mine. I thought maybe entering this forum would help me get some advice from others who go through the same pain.

I'm in my twenties and have had chronic pain (on different pain levels) for almost 10 years. My main 'hurt spots' are my shoulder blades, lower back, neck, and hips. Occasionally, my knees and elbows ache but that's very minor. I get headaches at least 3 times per week and my chest/breast area is always tender. In fact I had an ecocardiogram done a few months back and the pain on my chest was almost unbearable.

My primary care dr. said it is most likely fibromyaglia caused by a car accident I was in. But I've had no real treatment for it. I've gone through physical therapy and tried Lyrica, but no change. I have gastro problems (IBS) that I've been dealing with and they're more of a problem than the rest of the pain. I've been focusing on the IBS more than the fibro (if it's fibro).

I would really like to get some advice from knowledgable people about what I may be going through and how I should approach my doctor. I've been told I should request an MRI but do patients ask for them or wait until the dr. thinks it's time?

I'm young and confused on what to do and would appreciate any words of wisdom Thanks!!

[nyree]

Hello I too have problems with my back and neck you do have to ask for an mri from your doctors if you dont they wont get you one.I have a herniated disc in my neck and a degenerative disc disease in my back they found that in my mri thats the only way.I had a disc surgery in my neck and this was in 1996 and now i am in pain while i am typing away i have a heating pack on my neck.how do they know what you have if they dont do any accurate tests on you.I do have to go through surgery again had plenty of steroid injections and i am still in pain so i know where you are coming from .i used to be an outgoing person who loved doing things right now i just lay down dont do anything this helps the pain some what .Its been 16 years going through this pain I am 40 years old .i have stopped working tring to get better it seems like its getting worst the doctors put me on pain meds vicadin and cymbalta for depression going through alot these days I just dont want to go through another surgery right now .So ask for the mri please its better to find out what is wrong with you befor it gets worst.good luck with your doctors.take care .
nyree

[zako]

yes...ask your doc for the mri...dont wait for the docs....take charge yourself...
how do you find your sex life during this period?

[jmwilson84]

Hi rsd324

I'm not sure where you live but I would recommend getting an MRI and bringing to a qualified physician that you can trust. I am in the Chicago area and my boyfriend found relief with a treatment called VAX-D. It's non-surgical and I would 100% recommend looking into it before you consider surgery. The truth is it has a better success rate and is non-invasive. If you find an office that also does nutritional counseling that could help with your gastric pain. I was lucky that we found the American Back Center because they have a whole clinic devoted to nutrition and I was able to find relief from my health problems whilst my b/f was being helped with Vax-D.

They use a multifaceted approach which I would look for too. They use massage therapy and ice/stim to help make the treatment effective. Hope you can find the help you need in '09

Best.

[minlari]

Hi I am a 38 year old female and I know EXACTLY what your going through I do agree that it sounds like fibromyalgia I thought I'd share my story with you. I've been living with it for about 10 years now along with others like arthritis, herniated disc in my neck and back RSD, RLS, IBS (irritable bowel syndrome) degenerative disc disease, Bursitis, CFS and raynauds disease(which not to sure about after this last finding which I will explain in a bit) headaches real bad which I just had mri's done on my whole spine I've been getting shots in my neck and back every 3 or 4 months and there are a few more to do with my spine and disc.
I am on lyrica 150mg 3x a day (and it does work), flexeril 10mg 3x a day, percocet 10/325 EVERY 4 hours and are now talking of putting me on methedone which I've been told works better and it last longer. Right now I can not sit, stand nor walk. The doctors at the pain management found that I have a arachnoid cyst that is benign on my spine that goes from the top of my thoracic to my lumbar and we don't know if it's causing my tailbone pain right now or not but the pain is really bad and I havent done anything to bruise it.
Look up fibromyalgia in a yahoo search and when you find a site go to medications that are for fibro and it list some meds to try and some in combination really help. heres 1 site www.losethebackpain.com
Good luck and I hope you can find something that helps you, It is so hard to live and do your everyday things especially when you don't really have people backing up. I will check back on this email but if I don't my email is [moderator note: e-mail address has been removed] in subject put fibro forum so I don't erase it.
Oh and there are blood test they can do to show levels to determine if it's fibro, also deep massages, and physical therapy really work. Ask your doctor for a blood work up (to check all) potassium levels run weird. If your doctor doesnt do the things your asking for I think you need to pick a different doctor. I usually do the research then talk to my doctor about it.

[fayralei]

I think it's the "no one believes me" factor that gets me the most too. And people saying that you just need to stretch it out or it should go away. Or it's just something in their eyes. And you feel like you are constantly complaining, like you are a drag or something. I think if people could understand our pain, it would be a lot easier to bear.

I have Spasmodic Torticollis in my neck which has been developing for a couple of years but I've had a solid year of chronic pain from it. It inhibits my activities. Sometimes I have a few weeks where I feel I'm better and the pain is improving and it's manageable. Then I have another flare up and I'm not able to enjoy things again. Which really aggravates me, and the worst part is no one can truly understand because they don't have it. That's why I think this forum is wonderful, just having people around you that understand helps a lot. I think a lot of the effect of chronic pain is the emotional side. That part is harder to bear than just the pain itself.

Anyway, I learned that my disease is more a disease than an injury. It can be genetic. So that takes some of the guilt off WHY it happened or HOW to treat it. My doctor is a very good specialist. He's called a musco-skeletal pain management doctor. He injected botox into my neck last week. But it hasn't helped yet. I have been reading from other people and it may take as much as four weeks to set in. Since my trapezeous muscle is the one causing the problem my doctor has my holding 20lb weights 6 times a day for 5 minutes to try and loosen the muscle. He also has me sleeping in a turtleneck to keep my neck warm during the night so the pain in the morning isn't so bad.

I read someone commented that their pain was so great they just wished for the guillotine. It sounds funny but that made me cry because I have never told anyone that sometimes when the pain is just out of control and I cannot manage it and I am just at my wit's end I picture a guillotine. Like almost if you could cut off your neck that would end the source of the pain. It is kind of humourous but it is just good to know that someone else is feeling the exact same way. I know it's a subconscious thought but we had the same thought so it proves to me that I am not alone.

I think no matter what your problem is the first step is dealing with it emotionally and don't panic. Pray to God. Try to find the answer. But your answer may not be entirely with the doctors. Of course manage your pain, but do not feel you can control it or don't feel guilty for not being able to help yourself. Accept the fact that you have this chronic pain. I think acceptance is the first step. In the end the pain may be lessened or completely gone. But the biggest lesson you can learn is how to overcome it EMOTIONALLY. This will allow you to engage in activities slowly that you feel would not make your pain grow. Thus, you can re-engage in your life. You can always do something even if it is as simple as reading a book. Something to give yourself a sense of accomplishment as you work towards truly being a part of your community again. Never give up on yourself or feel you are alone. I think that will lead to failure; that kind of thinking.

[minlari]

Hi first just wanted to say I thought fibro before i seen you had it down. Hi my names mindy we sound just a like i dont complain but im in pain 24/7 the latest being sciatica (very painful) Im actually sitting on one of those things when you have a baby you put around your waist to feed them so your arms dont get tired. When you said about your breast bone hurting mine was so bad one time I went to the ER. I had a car accident when i was in my late 20's now im in late 30's and the car accident caused mine. I know people don't listen or realize that you really are in pain. I also have the IBS problem and I need to go see a GI but I haven't stressed it enough. When you have fibro you feel like you have the flu 24/7 your barely ever out of pain (yeah a life we really want to live with) There are so many things i want to do in my life but we can't if we do somethings then we pay for it for a few days. IBS is caused by fibro, you also mentioned your points in your body where it hurts, they are the pressure points of fibro. If so my heart goes out to you, i know exactly what your going through.

[mdubs]

You have got to check out this book "The Divided Mind", by John Sarno. He also wrote a book called "healing back pain." I have pretty much the same symptoms as you (plus wrist pain) and it helped me out a lot. I wrote an overview of Sarno's theories on my blog:

http://carpaltunnelblog.blogspot.com/2009/06/dr-john-sarnos-mindbody-medicine.html

good luck!

[meglaser]

MY ADVI CE AS IT SOUNDS LIKE YOU SUFFER FROM MANY OF THE SAME THINGS I DO!

GET YOURSELF A VERY GOOD NEUROLOGIST WHO IS KNOWLEDGABLE IN FIBER. AND RSD AND GET YOURSELF A GOOD PAIN MANAGEMENT DOCTOR.

BETWEEN THE TWO YOU MAYBE ABLE GET SOME COMFORT. LET ME KNOW HOW YOU MAKE OUT!

MEG

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