Complaining Because I am PO'd
It isn't like I don't have good days where I can walk and talk and appear normal. But, the bad times are always waiting in the background. When I really consider the state of my health from birth to my upcoming demise (76 yo) it has been one long pain. First there was colic. Then there was a major burn. Then a broken collar bone. Then strep throat over and over until I had my tonsils removed. Then teeth issues that lead to removals. All this before the age of 5. Then from teenage through adult years severe pain and blood loss that left me anemic without being reasonably able to bring my hemoglobin to normal until menopause. In the interim between my teen years and menopause I had a breech birth that came close to ending my life, was diagnosed with Hasimoto's thryroiditis, and then caught Lyme Disease. I have sleep apnea and use a machine at night. Throughout the years dr visits caused more harm than good far too many times. One of my shoulders is lower than the other because the dr. who set my broken collar bone did a poor job of it. He bandaged me so tightly that my blood supply was cut off and I almost lost that arm. My low iron levels were not addressed. I wanted a wheelchair as a gift because I was too fatigued to walk. Chiropractic and acupuncture haven't done much good either. I went to a pain clinic because I have severe headaches, my cervical spine is disintegrating, and sometimes need a cane because one knee or the other or both hurt too much to walk or climb stairs. Pain medication was refused unless I would agree to a brain MRI. I have tinnitus. Afraid to get the MRI because I couldn't bear to make it worse. This morning I couldn't bend over and I am sitting with a heat pack on my back. I have a headache and feel dizzy. My closet is full of healthcare items: special pillows, heat packs, cold packs, analgesics, an oxygen generator, braces for my back, knees, wrists, elastic bandages, electric stimulation machines, neck traction devices-you name it, I probably have it. I am tired of this whole thing. I look pretty good for my age. I wish I could feel as healthy as I look. Sometimes you just cannot tell by looking at a person how much pain they are in, can you?
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@krisjb1 — sorry to hear you have been blasted with medical issues your whole life. I, and a lot of people on these message boards, also have been. You are correct that when people can't see what you're feeling, it's even more frustrating. I empathize with you.
After reading your story, the only advice I can offer is about the brain MRI. I have had terrible tinnitus since I was 11 and shattered my eardrum. I'm 64 now and it's louder than ever in one ear, but feels like my whole head. I have had several brain MRIs over the years and none of them impacted my tinnitus. You do want to put in tight foam earplugs that they should supply because the banging in the machine is very loud and will bug you for a couple days if no earplugs. Like after you go to a overly loud concert. Wear ear plugs they supply to be safe, you'll be fine and will protect your hearing. Some places even provide headphones with music.
MRI tips. Not sure if you've ever had an MRI. Some people are claustrophobic in the tube. I don't love it, but I don't take an sedatives either. Mind over matter. The secret is to close your eyes before you go in and never open them once until you come out. Don't even peek. Then you won't get that closed in feeling. I've probably had a dozen MRIs. It works. Hope you get some relief soon.
I have had a few MRI's before the tinnitus got worse. I can wear head phones (plastic ones) and ear plugs but what about bone conduction? This is something that I have experienced that concerns me. A few years back I got the idea that I could get rid of belly fat with sound waves. After a little research I was convinced that it was safe and effective. I went for 2 treatments instead of the 5 I had paid for because each time I went the tinnitus increased. Quiet sound waves were not quiet enough. Oh well…I will keep trying to alleviate pain without the meds. If I absolutely must get an MRI I will, but really don't understand why anyone should have to jump through so many hoops in order to get meds that make it possible to live comfortably.
Go ahead and complain. I don't blame you. I have some of that too . I was in a car accident when I was 3 yrs (fractured skull and neck issues), and I am still seeing pain management.. I feel like you do sometimes, like the sickness and surgery never end. My wife is the one being treated for breast cancer, but we're very close, so I feel her pain too. We keep saying this will be the year we stay out of the hospital, and it hasn't happened yet. This year the doctor messed up her breast rebuild, and then lied to us about it (she's just 4 years younger than you), and I was diagnosed with type 2 Narcolepsy. The symptoms are way worse than I knew.
I'm sure I'll be thinking in Jan 2024 that this will be the year. Believe it or not I'm not losing hope.
Keep hope alive @krisjb1.
Isn't it something that we keep trying, against all odds it often seems?
It also goes to show that medicine has not been able to cope with all the issues that we present. Sometimes they mess up and take no responsibility. Sometimes they act like they know more than than do. As long as I can I will make efforts to avoid putting myself through the medical merry go round, but sometimes it can't be avoided. I hope you and your wife can heal enough to enjoy your lives and forget about the pain sometimes at least.
May I add my good wishes also that there will be some better times ahead; I have not gone through what you have but quite a lot over my lifetimes with a sprinkling of depression and anxiety and other issues…. I had bit of accident when age 4 too and wonder if that sort of set the tone for my life; or whether when I was born I was not healthy in that during war in uk and food restrictions, poverty etc. and perhaps my body just wasnt strong. Even in older age, am 80 in October, its one thing after another and often odd illnesses like now almost a year with burning face, no diagnosis and yesterday noticed an odd type of sore on right breast and holding my breath to keep a watchful eye on it; plus a list of non life threatening illnesses yes it could be worse, although been thru cancer, but would be nice to have even a week of feeling well… and for those with more illnesses, pain, than me, my heart goes out to them all …. 💗
Wow @timbrownfl you have a lot going to too besides helping your wife. Rough to be in a serious accident so young. The narcolepsy sounds scary. Sorry about the medical error on your wife. I feel like my recurrent breast cancer was medical error like spreading cells with the scalpel. They said it was a recurrent tumor not a new one, but now 3x as aggressive. And then the next surgeon left a positive margin when removing the recurrent cancer. She only needed to take 2 cm more to be safe. Why cut it so close? She said, no more surgery, just let radiation take care of it. Are you sure? Then there was a radiation treatment oops. Really? I wonder if any of those mistakes will be what costs me my life. When they removed my brother's esophagus, they accidentally cut his vocal chords. Oops. He was consultant and now he could only whisper. Medicine is not an exact science and doctors aren't perfect, but at least own up to your mistakes. We definitely need to be our own advocates.
All that being said, we deal with what comes our way and live our best life in between medical issues and obligations. Medical stuff does feel like a full time job at times. I'm still here and enjoy my days. I hope we all see better and better days.
I am claustrophobic. They sedated me and it helped me get through it. Great big ball players won’t do those. I’ve been told that docs don’t use MRI’S much any more. My suggestion is to try another pain management doc and ask if they can use a CT scan. I just had one . In and out.
Sorry to hear you have been struggling. I feel your pain, I hear you.
I recently saw a neurologist who's sent me for an MRI of my head and left ear. I have tinnitus everyday mostly all day, right up until last night trying to quiet myself to sleep and even now. Apr 1st/23 were my MRIs. I have some numbness in my face, my cheek, ear and sometimes my tongue – apparently this indicates nerve 5, 7 & 8 inside my head. One of those nerves indicates the tinnitus. Follow up appt. coming up shortly, I'll let you know how that goes.
I find great comfort in hearing other folks' stories. I'm not the only one and it's good to hear what others have tried. I hope you find more comfort and joy in your life. Peace.
Pain is invisible until you shout out in pain. That happens to me. I just can’t contain it when its over the top. So I yell ouch or moan in pain until it passes which thank God it comes and goes accept for the neuropathy. That is constant. I hope you feel better. I know how overwhelming pain can be. Especially if they are doing everything they can to help you and you still hurt. Thats where I’m at. Research all you can on treatment plans and make sure they are entertaining it. So sorry for what you are going through 🤗
I had Bell’s palsy twice. Whatever you do don’t apply a warm compress. When I had it i had numbness in face and the nerve was dead for 3 months. The first time. I could not chew, I’d keep biting my cheek, it affected taste, even water tasted bad, ear pain and facial and eyelid weakness. I could not pronounce: b’s, p’s, w’s, etc. because half the lip was dead. I had a sinus issue for weeks before the first time. I had a lot of pain one night I applied a heating pad and fell asleep. I woke up with it.
I am glad you are seeing a neurologist. Back then (98 and 99) I went to ENT. They everyday did facial stimulation to try to wake up nerve. It helped after doing that every day. I was put on step down steroids. It didn’t; help. Not that I could see. I hope you get to the bottom of it and that it resolves. Keep hope in your heart and mind.