I have been dealing with chronic pain for 6.5 years and I'm about at my wits end. I have never received an official diagnosis and try not to get discouraged by this. But it's HARD.
I was a tennis player who played up to 10hrs/week. I was a cyclist who rode 25-30 miles at a time/2-3 days a week. I'm competitive, but love to do it for the fun. I haven't missed my sports, soccer included, as bad as I have the past couple of weeks. I'm HATING spending most of my days lying on the couch. Watching Animal Planet, Sci-Fi, most recently (probably why I'm so bummed): the Olympics. I used to be an ameteur skateboarder. I flew down stairs and rode as fast as I could down hills. The rush I got from all these sports I loved was incomparable to anything I've ever experienced; much like the feeling displayed on athelete's faces as they push themselves to the limit while millions watch.
I would trade anything, especially the handful of med's, to get back to that place. I don't accept that I'll never return there. I just can't. I also can't accept that 20+ doctors cannot figure out why I have chronic pain in my leg, on my sit bone, SI joint, buttock, down the leg. Recently it has caused a pinching pain in my low back. That "insignificant disc bulge at L-5,S1 is not that bad", according to the docs. "Arthritis in (my) SI joint is common and no cause for concern"...
Well doc, IT F-kin' hurts! I was riding my bike one day, slipped off the pedal and crashed on the seat from a standing position...not a big deal, so I rode another 25 miles. It happened twice. I kept riding and playing Tennis. I had a 9-5 deal where I was expected to sit before a computer all day. I hated sitting. Dealt with some awful burning pain down the leg, in my crotch, for about 2 months until my boss forced me to go to urgent care...that was the death of me. I NEVER imagined I would still be in this much pain years later.
Sometimes I feel like my docs are my opponent. My family no longer cheers me on. My team consist of a 4 yr old and a wonderful spouse of whom shouldn't be asked to take on such a burden. Sometimes I wish I could suffer in silence. I'll take pain over imposition any day. These boys are the light of my life. Well, what's left of it.
I'm no longer planning competitions, play dates nor family vacations. I'm a slave to the medication but still can't function on an acceptable level. If I state this, I "must be seeking a fix", or "must be in need of more drugs"...
Well, f-U medical community. Gimme back my bike. Gimme my tennis racket and some balls. Gimme a chance to play on the floor with my son. I want to clean my house!! I want to go to work. I want to go to the beach.
If only I could be as determined as those athelete's competing in the Olympics. That's what I want. Not another doc appointment. Not another pill.
If only my family (extended) could understand what it's like to be so stuck. None of them have ever felt this way, yet they are convinced it's in my head. So weeks, months, a year goes by and my son grows older; yet hardly any phone calls, only guilt-coated comments they breathe my way as if I wasn't suffering enough. No wonder my dad "checked out" after 26 yrs of chronic pain/Fibro/CFS.
I would never cause such devestation to my family, but the lack of support is enough to drive anyone mad.
So I ask, why me?? Why not my sister, or brother? I wouldn't wish this on anyone, but I cannot accept that this is a life sentence. I refuse to. Yes it sucks. Maybe I've become a stronger person for it all....but Christ!! Lessons learned! Let me move on!
I wonder if anyone else feels like the dark cloud hovering over the hopes, dreams and aspirations that every healthy individual within their family circles? They always forecast a dark day where I am concerned so avoidance, like an umbrella, protects them from me. GEESH!! All I did was push myself as hard as I could. I am an athelete. I have to get back in the game! HELP!
Hi Bren Bren. I feel your pain and I'm sorry that you have to suffer like this. It seems so utterly unfair.
I have no idea how you'll view this, but... After three nasty disc herniations and four failed spine surgeries, I've been in constant pain for almost 40 years. It becomes horrific when I stand or sit. I must spend the rest of my life horizontal. Even then, I have severe neuropathic pain.
For seven years I was a vocational rehabilitation counselor, working on a daily basis with paraplegics and quadriplegics. There are millions of people around the world who will never be able to sit, stand, walk, feed themselves or provide for their own bodily needs. Compared to them, I am very lucky. On my worst day I can still sit, stand, walk (briefly) and care for my needs.
Life with a profound disability is an exercise in perspective. While it's true that you and I suffer much more than the general public, our lives are likely better than those who are paralyzed or who have a painful terminal illness.
As bad as it gets with chronic severe pain, we can learn to tolerate it with the proper combinations of medications and with effective mind-body techniques (Yoga, biofeedback, systematic relaxation, meditation, acupuncture, hypnosis, etc). And we must remind ourselves that as bad as it gets, millions more are worse off. Millions more will never be able to things that we take for granted. It's all about perspective.
Thanks for that Charles. Very humbling. I feel small after reading what you are going through. I let frustrations get the best of me at times. Everyone has a "breaking point", though I didn't quite snap, it was a rambling rampage.
I get do frustrated that I haven't received a diagnosis, may never get one. But waiting so long, I have slipped in that chronic pain category. The chances of me getting healthy again seem slimmer.
But overall I need to remind myself that there are so many people out there who are afflicted with worse pain conditions, Parkinson's, Lou Gherrig's disease, cancer, RSD, Failed Back Surgery Syndrome...all who won't get back to their former lives.
Hi bren-bren, I am glad you told me about your site!I've read a few posts and think its a great site,hope you stick with it !! Sorry,I did not realize that you are having such a hard time and am I right that you still cannot find aDr. who can realy figure out whats causing all your pain??It must be really hard to come from such an active life and now be on the couch alot!I can relate!But ,instead of a couch I sit or lay back in an Antigravity Chair!Have you ever tried one???It has really helped my pain alot and I feel lost and in more pain without it!More latter! 77grace
Hi Cewinbl, Your post is encouragable!Of course we know your right and most of the time I try to think the same way but ,sometimes I just get down and when other things pile up,Stress Financial etc.I can feeland seem more down on myself! I really need to get more into alot of the things you mentioned,Yoga,,medataion etc,what is systematic relaxation??How do I find where to go for Biofedback?? Take care,77grace
Hi Bren-bren, You know ,cweinbl has a good point of veiw!! I was talking with a friend today and she also is a Cancer suvivorbut ,is left with alot of pain and health problems because of the heavy medications to kill the Cancer!Point is ,she is so Happy in the Lord and she has a way of turning baad things around or just looking at them differently!So it made me think and its true,when I get out of myself ,go out side too,and talk to others or help someone I feel better!I need those little reminders once in a while and i'm sure you do too!!!So,if you want we can help to srtenghten each other! Blessings,77grace
Hi 77grace. You can access Yoga, systematic relaxation and meditation through a varity of local providers. One of the best ways to avoid a scam or an incompetent pretend-professional is to use local public education to screen for you. They only use certified professionals. Check with your local university (community, adult ed., non-credit education), community colleges, even local public school systems. Most of them offer adult education courses, including the topics mentioned above. They screen providers before using them. Keep in mind that these treatments will not eliminate your pain. It will help you to manage it somewhat. As wonderful as I find biofeedback, it reduces my pain by at best 20%. You'll likely continue to require other treatment millieu.
For biofeedback (which, by the way is terrific for chronic pain), you'll need a referral from your physician to a comprehensive pain management program. Biofeedback typically requires at least twenty to thirty sessions before you can accomplish it on your own at home, without the computer and software used at the pain management center.
Be sure NOT to go to a shot mill. That's a physician (or group of physicians) masquerading as a pain management program. It's not "comprehensive" unless it offers plenty of treatments beyond injections, such as TENS, acupuncture, physical therapy, traction, decompression, medications, biofeedback, spinal cord stimulator and intrathecal infusion pump.
By the way, B., it's never "in your head" when there is a CAT-scan, MRI or other defined bulging disc, herniated disc or compressed nerve root. Tell that to annoying family and friends who don't believe that your pain is real. Or, just ignore the ignoramuses.
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