I’ve been dealing with chronic back pain, several herniated discs as well as osteoarthritis, spinal stenosis and scoliosis for over a decade and I’m not even 40 yet. I have 3 kids and a husband that I love to take care of and be a good wife and mother too. But my chronic pain keeps me from this and enjoying life in general. This article speaks to my heart and says everything that I want to shout from the rooftops to everybody about my pain that I live with every second of every minute of every day of my life. Most doctors that I talk to take one look at me and the first thing they say is “you are young and healthy there can’t be much wrong with you” and I’m dismissed right away. If there are days I go to see a specialist and I decided to slap on some lipstick and a little bit of blush well then I’m even more ignored, because there’s no way somebody living with chronic pain had the energy or desire to put on a little makeup let alone bothered to shower. There are some days when I’m getting ready for doctors appointments and I want to intentionally not shower and make my outsides look the way I feel on the inside just so that people can take me seriously. Each new Dr brings on a new challenge of proving the pain that I’m in. So I make sure that I hold on to all my CT scans, all my MRI’s, all my xrays, all my blood work like they were the last things on earth that matter to me. I’m very lucky to have a supportive and loving husband that allows me time to rest but more importantly the space to vent about how this chronic pain breaks me day in and day out. We’ve been together long enough where he has seen my breakdown happen. From someone who wouldn’t go a day without working out whether be lifting weights or running to a tired worn out “dead inside” mother of three, struggling to put dinner on the table with a smile. Some days I could lay in bed and stare out the window crying and then there are days where I can walk miles and miles feeling great and go to bed with a smile on my face. The one thing that always seems to be a rock amidst the crazy pain is surrounding yourself with supportive understanding and loving people. Living with chronic pain makes you realize what’s important in life and what’s worth spending your energy on. I am hoping that through finding the right doctors and continuing to surround myself with supportive and loving people there will come a day when I will have more good days and bad days. Until then I wake up each morning thanking God for all of the things I have in life asking him to give me the strength to be the best that I can be.
I’m temporarily ( I pray) paralyzed in my right hand and arm. I knew from the first needle in it was placed wrong, my arm and Body jumped off the table. I cried in excruciating pain!
I hyperventilated was given o2 and proceed. It was like an electric shock went through my arm and neck. I was in the hospital for 2 days, MRI and Cat Scan show damage to my spinal cord.
I’ll never do another cervical epidural again. I’m following through with surgery.
So I’ll start with my recent issues. I’ve had chronic fatigue syndrome since 2009. I worked until the summer of 2014. I lost my car and then sprained my ankle the same month i had to quit or be fired.
Everywhere I’ve worked, no one has any sympathy. I’ve had people tell me I’m faking it, exaggerating it or it’s all in my head. The first few years I had this (until 2011 or so), I thought I had a stroke and/or losing my mind. I was also in pain of all kinds.
CFS is the bastard child of modern illnesses. People don’t even take the term chronic fatigue syndrome. They think it’s a made up western/american condition. It’s very real and its a pain in the ass.
I haven’t seen some of my friends in years, those that I do keep in touch with I don’t even see that long. I rarely go out because I either don’t have the money, my anxiety gets the best of me, or I don’t have the physical and/or mental energy.
Those first few years I had CFS I had countless people take advantage of me, be rude to me, accuse me of doing drugs. I’m glad I finally left where I used to work, I even got an attorney to possibly file a harassment claim.
I’ve had people accuse me of hypochondria and most conventional doctors have been unhelpful and even counterproductive at times.
I will have a hard time getting on disability, despite my condition putting me at risk of injury (or worse) and others at most jobs. My lack of motivation or low energy is often attributed just to “laziness”. Please… I used to do martial arts, break dancing and high intensity weight training, i can barely do any of those, I do my weight training but maybe once a month if that.
Next time you see someone going through this or that has CFS, maybe try to help them out instead of being so judgmental and unhelpful. Stress makes CFS worse as well as many other chronic conditions. If I had AIDs or cancer or a more well known condition I would be taken much more seriously.
Anyways, just felt like ranting
It’s been four years since I had my son and the epidural. It didn’t work to block the pain. I have seen a couple of doctors but they think I want pain meds and a diagnosis or disability. I do not. I want my life back. The day after delivery, and since the epidural, my life has changed forever. I have chronic pain and weakness. And other issues associated with it. I just want to feel better. And I won’t take pain meds for it. Not how I want to live my life.
I got diagnosed with sacroiliitis, fibromyalgia, and chronic pain disorder at 16. I started having symptoms two years prior. I’m 21 now and have added a few more diagnoses to my axis. Living in constant pain for this long is extremely depressing. When you’re a depressed teenager, people tell you “It gets better! Just hold on, you’ll get through this!” but that’s a lie in my case. It doesn’t get better for me. It gets worse.
I’ve tried to take my life more than a few times, usually just because I don’t want to be in physical pain anymore. I’ve given up on suicide as an option, but the desire to die hasn’t left me. And I mean I have good days sometimes, like today for example. I cleaned my kitchen and ate some food. That’s a good, productive, day for me. And now I’m at home, with a nosebleed that won’t quit, an inability to sleep, shooting pains throughout my body, the feeling that glass has been ground deeply into my skin, muscles, and joints, and an absurdly itchy eczema outbreak, because even though today was a good day, I’m just not allowed to be okay for more than a few hours. It’s like my body is a tornado and I’m just trapped in it, begrudgingly going along for the ride.
And it’s just incredibly lonely. Even the most loving, well-intentioned, kind people just make things worse, because no one around me can possibly understand how I feel. No one in my life seems to understand how desperate I am to be out of pain. That’s really the only reason why I want to die, so I can just stop feeling things. Medications don’t really help me- opioids are ineffective, fibromyalgia management pills always make things worse (some gave me symptoms of schizophrenia, some made me dissociate nonstop, some made me swell up uncontrollably, etc.), OTC painkillers don’t do much of anything, and lifestyle changes don’t really mean anything to me. I’m a vegetarian former fighter, yoga fanatic, and rock climber. I’m not overweight, I’ve retained most of my muscle mass, I’m still flexible, and generally speaking, I’m really fit, so getting in shape won’t help me, eating healthier won’t help me, meditation won’t help me, exercise won’t help me, medication won’t help me, positive thinking won’t help me, hobbies won’t help me, nothing helps. I’ve tried pretty much everything at this point.
It’s like the spoonie philosophy, except I’m robbed of all my spoons every morning and have to somehow make more apparate as I need them, and the world reacts to my inability to make that work as if it’s all a character flaw.
Does anyone else understand how I feel? If so, how did you learn to cope? Have you learned to cope? Is there such a thing as coping, or will I just be pretending to be fine for the rest of my life? What’s the point of living if you will never be okay?
I have been on pain relieve 120 30 mg oxycodone every month, that has dulled the pain but it never leaves my mind.I have severs lower back right leg pain and chronic pancreatitis.The pain has now become level 10 each time after I sleeping the morning and then some.I feel like I can’t get up even after a 30 mg pill.I stay in bed and crawl into mt living room after one hour.I need a double dose just in the morning to give me the wherewith all to get up after the hour it takes to go into affect, Why are we treated like drug addicts when I just want a normal life.
The doctor laid me on the table and gave me a shot. I heard a squeak like pop, then a severe headache, stroke, seizure, vertigo and a spinal debilitating headache for a year. I still have constant headaches, but now after 5 years, I go to the pain management. They don’t listen or look at the records, just hand out drugs that help somewhat, but if you find something that works they don’t seem to care, they just do what they want. I have had two blood patches and no relief. Spent 5 years in hell, being told I cant have a headache but I still do.
Well, 5 years, 10 doctors, 134 visits to the ER, 3 neurologists, 8 primary care doctors, 15 different meds, (watch out) they love experimenting and giving out physc meds for pain, which have never been proven to work on spinal injuries.
So after 6 SSDI hearings my Judge was so disgusted with the medical treatment and couldn’t believe all the things wrong with my back, he gave me permanent fully favorable SSDI. I’ve had 5 MRIs, all showing progressive growths at the injection site. Bone spurs have shown up, stenosis, the disc is now budging and herniated and it’s to late to take legal action, because CA has a two stature of limitations. So my advice to you all is, watch out they don’t care, and they love to get you hooked on meds, then cut you off. They’re evil, heartless people in the majority, even with full disability and several things documented throughout my whole spine, the pain Dr has yet to see my CDs or read my disability findings.
He comes in for one minute, types in Norco’s, Fentanyl, Valium and leaves. I told him, my leg still burns, he doesn’t care. He thinks I’m there for a headache, he has not read that my lumbar and thoracic are all herniated and budging, with vacuum disc phenomenon, with degenderize bilateral knees colitis diverticulitis and gout, because he does not have the file. I do, I have offered it, he says no, I know what is going on, so I guess he is psychic. Oh well I’m luckier than some. Just remember we’re their rats.