This could be long.....I'll try to give the shortest version I can.
I've been battling Crohn's since I was about 18, diagnosed at 25. The diagnosis expanded to Cohn's Colitis with IBS. I've been on just about every drug available to treat it. I used Remicade for a year before a surprise pregnancy made me stop for 9 months (wasn't yet approved for pregnancy). My Crohn's flared 4 weeks before my son's birth, and I had an infusion 2 weeks after he arrived. 6 days later, I had the most horrendous bout of serum sickness known to man (in my eyes anyway), which left me with a torn rotator cuff and labrum in my right shoulder and started my joint pains. I have been on steroids (first Entocort, then prednisone) for 5 years now. Of course, after all this time, the benefits are all but gone, my adrenals are dead, and I am suffering many ill-effects from the long-term use, including a large hump on my upper back, borderline osteoporosis, and of course, aches and pains everywhere, which prednisone should treat! I'm 31.....I have four kids. I was an active kid, played every sport I could, hiked, biked, camped, exercised....now, all of this is gone. I struggle to at least go camping with my kids, and suffer the whole time. I was diagnosed with fibro just before becoming pregnant 7 years ago, and never went back (and was off the meds) after my daughter was born because the Crohn's took over all my concern. I've dealt with ever-increasing joint pain for 3 years now, so much so that it takes a good half-hour to rise every morning, then I get my kids off the school, get to the bus stop exhausted and have to rest, and when I return, I'm on the couch for hours, in pain. I have been tested for RA, OA, had xrays of many joints, bone density scans, many blood tests for off-the-wall disorders, I've had parvo and ehrlichiosis. I've tried antibiotics for the pain, I've been on Soma for a few years. I find myself using the Vicodin prescribed for my abdominal pain to also ease the pain everywhere else, which leaves me with not enough meds (as needed for abdominal pain would be BEAUTIFUL, if that were my only issue). I have migraines. I have TMJ. I had a hysterectomy for endometriosis and adenomiosis. My repaired shoulder stil aches and screams, burns to the point of tears and screams. Every joint aches constantly....the swelling is visable. I have neoropathy in my hands and feet, mostly on the right. My back goes out at least once a mont with constant feelings of instability, burning, and pain. Soma and Robaxan only help for so long, and just so much. I can't do dishes for more than 5 minutes on my feet. I can't walk long distances without my feet becomingspongy, painful, and swollen. My fingers and toes often feel like sausages ready to burst, burning and numb, tingling and swollen. I don't sleep at night, even with Ambien, or pain meds, or muscle relaxers.....the pain is too wide-spread and I lay there jumping around and like I'm being shocked, which hurts even more. My head hurts inside my right eye all the time, causing twitching under the eye. Both sides of each kneecap often feel like they'll break through the skin. My right hip often goes out from under me, causing pain and sometimes falls. Every major joint aches every day, from mildly to unbearably. I use the meds I need for stomach pain to help me get through life. I don't go through withdrawls, I don't crave them, I crave FEELING HUMAN! I want to hike. I want to play basketball and soccer and bowl with my kids. I want to be able to open a can or stir a pot ot have the energy to pick up my living room in one day, without help. I hate depending on my family to pick up the slack, it's not fair. I have what feels lke electrical pulses going through my head, especially in my ears, short, fast zaps that I hear and feel, that drive me insane. Typing this long post has required breaks in between. I'm exhausted all the time, have to fight, mind over body, to get up and do things. It hurts too much. Yet I can't sleep at night because of the pain. I feel like I'm at a dead end.
Reading this board, I finally feel like I am not completely insane, or making it all up in my head. I feel like I can share my story, because if I told all of this to someone who hadn't experienced it, they'd think I was making it up. I hate going to the ER when I am at the end of my tolerance, when I can't take anymore pain, or going to my PCP (who doesn't prescribe pain meds, as he and my GI have agreed that she is the pain dr).....GI and I have discussed pain management, but she was afraid I would be masking serious Crohn's issues. Now, I was just diagnosed with completely flattened villi from Celiac Disease, and THIS is making my stomach problems as bad as they are. I begin a gluten-free (and egg-free) diet on Monday. Now, what about the rest of my body? I want to feel 31, not 71! I get no high from pain meds.....I look for even an hour or two of relief, enough so I can function somewhat normally so I can be the mom I'm supposed to be, the mom I WANT to be. I need no referral from my insurance company.....yet I am still tossing around the idea of doing this in my head. I spoke at length with my husband this evening about it, and he is fully for it. He sees my pain, my stuggles....he shaves my legs when I can't, he helps with my makeup or hair when I simply cannot lift my arm high enough to do it, or hold it up long enough without it going squishy. He takes over for me when I can't play with the kids. He sees my suffering, and he knows that I just want to be human. He wants to be there to see the doctor, to help me explain, to tell him the things he sees me struggle with, the obvious physical manifestations, the fact that within 15 minutes of me getting out of bed, he can call how my day will be....he sees the pain in my face and body, he sees me unable to stand straight and not like an 80-year-old woman with sever osteoporosis, he hears the creaks and cracks, sees that I cannot crack joints or make them feel any better. I want to stop hurting 24/7. I want to sleep a full night without waking to excruciating pain. I want to shoot hoops with my son. I want to lift my 2-year-old up. I want to be able to do normal things that any person can do!
Am I in the wrong place? Am I nuts? Or does all of this make sense to someone???? I need help, I cannot live like this any longer....I feel like an invalid who cannot enjoy the simple pleasures of life because I just hurt too much. Is it time to make that phonecall? Will I be looked upon as a drug seeker? Will I be pushed out and told I'm fine? I'm scared to death to make this move, but I can't continue this way.
Thank you all for the opportunity to vent, and for any insight or experiences you'd like to share!