Share Your Pain Story

999 Replies to “Share Your Pain Story”

1. I had to have 8 teeth pulled in one day they sent me home and said take aspirin. I told them that was blasphemy but they gave the girl getting her wisdom teeth pulled vicodin. I have no record of drug abuse. If the junkies want to overdose in the street that’s their problem don’t kill the working class with pain!

2. Whenever you hear someone say “I am doing this for YOUR OWN benefit” you ought to be skeptical. Especially if you don’t want it done, and they are using force to do it.

   I am 70 years old. I have been living with atypical facial pain since age 19, when I had a smoke inhalation injury that injured nasal and sinus tissue. At first I was diagnosed as suffering from psychogenic pain, and referred to psychiatrists. This was making things worse and I did the best I could without medical help for the pain. By chance, at around age 35, a doctor prescribed codeine. Immediately my life improved. However this doctor moved, and I had difficulty finding doctors who were willing to prescribe opioids. It was a constant struggle to find a doctor who could help, and often I went without help. Eventually, at around 50 year of age, I was referred to Dr Russel Portenoy at Beth Israel in Manhattan, who was had a COAT program, a Chronic Opioid Analgesic Therapy program. Dr Portenoy was able to get a lot of publicity and the tide was changing, as to how physicians viewed opioids. My life took a dramatic turn for the better. But eventually at age 66 or so the tide was turning against opioids again. Beth Israel Medical Center was merged with Mount Sinai and the COAT program was stopped. Fortunately, one of the physicians who worked in Dr Portenoys program started a private practice, in Brooklyn NY. So I went to Brooklyn 4 times a year to see this doctor. This was draining me financially as I am on a fixed income from social security of 1324 per month. It was also hard for me to make the trip, whether I drove or went by air – which took just as long as driving, by the way. I found someone at Duke University Medical Center, who treated me for about 2 or 3 years, at a reduced dosage, but now they are weaning me off.

   Many pain patients are placing blame on illegal users, heroin users, people who buy prescription opioids on the street. But why should pain patients be punished for the actions of illegal users? And why should illegal users be punished? Many of them are simply doing their best to survive, and they are NOT the real reason pain patients are being weaned off opioids. I think we need to Follow the Money. Who is really benefitting by demonizing opioids, and opium, which is a simple agricultural product, basically it is just dehydrated fruit juice, the juice of the opium poppy apple. In Afghanistan, opium poppies are being grown. Instead of simply buying opium from Afghan opium farmers, the powers that be in Britain want to eradicate their opium farms, and are instead growing opium poppies in the British Isles. it is a power play, to take economic power, and money, from Afghan farmers, and give it to British investors.

   Whenever you hear someone say “I am doing this for YOUR OWN benefit” you ought to be skeptical. Especially if you don’t want it done, and they are using force to do it.

   Don’t let them divide and conquer. We as pain patients need to JOIN with street users.

3. I have 10 back cushions and a torn rotor cupshoulder that didn’t turn out good plus need neck surgery all a result of a fall my pain is so bad my life is laying in a bed most of the time movement is very bad pain since they reduced my pain meds to nothing I would say as good as a tylenol i wish some drs would stand up for there rights to treat patients the way they know they should without fear from the government taking there licience away they took a oath and the government is stopping them from doing what they telling the drs to do we need drs to speak up and defend the people who are now suffering in there homes and now the government is saying if your on a narcotic you can’t get a anxiety pill now what happens if someone who needs both they will become in my option high risk for killing themself due to our government who has go e to far yes there is a problem but foir patients like myself who is in unbearable pain suffer all day a d all night so where are all our drs they should be standing along side us because the government is taking there oath away from them for treating patients the way they need it so THIS IS TO ALL YOU DRS IF YOU CARE ABOUT YOUR PATIENTS AND TIRED OF GIVING BAD NEWS TO YOUR PATIENTS THEN SPEAK UP AND DEFEND YLUR PATIENTS AND FOR WHAT YOU STAND FOR PATIENT CARE WITH MERCY AND CARING AND YOUR OIATH YOU TOOK STOP BEING SCARED DO SOMETHING!!!

4. I first got hurt in the parking lot of my job working for the state for veterans in 2010 there was ice all over the parking lot I slid and fell as I was getting out of my car fell on my stomach hit the curb & fractured 2 ribs a co worker found me as he was going into the building helped me up mind u my shift started at 7am I could not get up & walk thank God he found me I was out for 4 months still in pain but the workers comp had cut my pay in half so I had to go back to work my dr didn’t think I was fully healed but I had no choice because I had bills to pay & a mortgage then in 2011 I got hurt trying to not let a patient fall & break her hip or any other part of her body I was alone in the bathroom with a resident after her taking a shower she started to fall I used my whole body holding her up holding on to the bar so I would not fall as she was sitting on my knees she started to slid left so of course I went with her I had the wheelchair behind me but the wheels where locked so I needed to strech myself while holding the bar with my rt hand & her still on my knees I finally got the wheel chair after stretching more then I should have and got her into the chair safely after about 1 hr I was in so much pain that I had the supervisor give me the ok to leave I tore my left shoulder & my whole left side was killing me I was out of work for about 17 months but in those months my body started to really hurt bad I did not know I had CPS I went to all types of drs to see what was going on because the pain was unbearable some days where ok and others where the days I couldn’t move I would cry that’s how bad the pain was I returned back to work even though I was still in pain a couple months later I got hurt agian this time a resident kicked me in stomach I lost my balance landed on floor he landed on top of me due to the pain I already had i didn’t realize I have gotten worse I was sent home that day by the supervisor I took only a couple of days off went back to work…. 1 1/2 yrs later I ended up shattering my rt angle helping a co worker to get a resident in a wheel chair as doing so I swing my foot under the wheelchair hit the medeal cab and all we heard sas a cracking sound within 1/2 he my foot & angle was swollen I could not walk I went rt to the dr & that was the last day I worked … I would go to work in such pain after my incident in 2011 as my coworkers saw how much pain I was in couldn’t even walk at the end of my shift I had to work I had a mortgage & bills to pay but after my last incident I couldn’t anymore my pain got really bad my whole left side is where I have chronic pain & im a lefty and as of late my body just keeps getting worse everyday is a different one either I have pain I can tolerate with my meds or pain that I can’t even get out of bed or walk but my meds do help me a lot I have been waiting on my answer for disability which took 4 yrs me loosing my house of 13 yrs my car I had since 2005 & nobody seems to care that I am struggling yes I finally got approved for snap & medical insurance but I need income I live with my friend & also my son I go back and forth I almost lost all my belongings 2 months ago in storage but thanks to my son & niece I’m so angry disappointed that disability’s taken there time I would like to at least get my own place agian and feel happy agian I’m only 53 & my body feels like I’m much older I have lost the ability to do the things I loved to do like going to the gym skiing bike riding walking going on rides at amusement parks gardening loved doing all that stuff but can’t anymore I still try to do my gardening but in short times here & there this disease has truly changed my way of living for the worse & I get so depressed sometimes that I can’t do the things I use to be able to do my daily living had changed & I would never wish this on anybody because it is truly hell the tingling, feeling like something is crawling on your skin , places on ur body that feel like someone beat the hell out of you if u touched a certain spot the locking of ur back sciatica running down my legs , running leg syndrome at night so u can’t sleep , feeling like you have bruises on the inside of ur body taking a shower as the water hits ur body it hurts feeling like needles poking ur entire body , headache can’t lift things can’t bend to pick something up can’t sit or stand or lay down for a certain amount of time before you feel the pain getting worse can’t walk as far as u use to because it’s a struggle these are some of the symptoms I feel everyday & im sure that ppl like me understand what I’m talking about & there is no surgery for this at all yes medical marijuana helps but it is very expensive so I can’t even continue getting that so I can sleep at night …… it is really a sad nightmare & God Bless all that have what I do because it’s continuous pain day & night 24/7 & thank God for my meds because I think if I didn’t have then to relive the pain I would be dead sorry to say but the truth God be with you all ❤️❤️❤️And ty for letting me tell my story about my every day life

5. Where do I start? I’m a chronic pain sufferer and have been for 8 years., at least that’s when I was diagnosed with degenerative disc disease in C-2 thru 4. A botched knee replacement came on board shortly after.
   RA , OA and fibromyalgia…….I see a pain management doctor. In January 2018, my doc cut my pain meds from every 6 hours to every 12 hours. His excuse, was all the lawsuits filed against doctors for prescribing opioids and then became an addict.
   I’d be happy to sign a ‘contract ‘!
   I’d love to be active again, sitting out on family activities is depressing.
   I’m happy to see a grassroots movement happening, hopefully that’s a start.

6. I have been living with multiple chronic pain conditions and autoimmune diseases. At one time, I was on multiple opiods and existed like a zombie. I was slowly weened off of the majority and was able to retain a prescription for Tylenol 3 and Percocet. I found alternative methods that helped diminish the pain. I STRONGLY feel that insurance companies need to cover licensed, alternative care professionals, especially if the patient can state & show evidence of its effectiveness.

   For many years now, I’ve been taking daily OTC Tylenol and Ibuprofen. I use T3 sparingly and very seldom Percocet. I was recently introduced to the Functional Health Team that approaches treating patients by identifying and removing the root cause of disease rather than solely alleviating symptoms.

   Many debilitating conditions are due to high inflammation in the body & my markers have always read extremely high. The New England Journal of Medicine has published that most approximately 90 percent of major diseases involve chronic inflammation. Inflammation tears down joints, muscles, organ tissues, effects the brain, & basically land its assault anywhere in the body.

   So my anger is with the American Medical Association, Insurance Companies and others who do not recognize we need access to alternatives, like #FunctionalMedicine if they want to limit or remove those of us suffering and barely living our lives from using pain meds.

7. My Pain started at age 40 and continues to get worse! I’m now 68. I started with family Dr. and he sent me to a Pain Specialist. After a long series of x-rays I found out I had Scoliosis, 2 pinched nerves and Degenerative Disc with Fiber Mialga too ! I started with pain medication. Some months my dose would change to more Meds and this lasted for 20 plus years! Not once did I take more than I was Prescribed and not once did I Overdose! Then about 2 years ago the same Doctor that cared for my Chronic Pain for 20 years told me that the FDA would no longer allow him to prescribe Pain Medicine and he would have to send me to a Pain Management Clinic. I currently go there to get lower doses. I now am back in Hell every day from the Pain !

8. My Mom has had 9 Back surgeries a knee replacement and has been taken off her pain meds because some idiots think they are Doctors and call it addiction when it is flat out relief and survival just to function daily. Why not alcohol or cigarettes? That is an addiction. You don’t need that to function!

9. I have been a chronic pain patient for about 20 years. I’ve been on several different types of pain medications over the years. I’m 52 years old, a retired nurse due to a back injury. I have degenerative disc disease, spinal stenosis, L2-L3 discectomy surgery that failed and I need more back surgery, arthritis and fibromyalgia. That is just my pain diagnosis. I have other severe health issues.
   For years my PCP handled my pain medications. Then like many of you I was told she could no longer take care of my chronic pain and was sending me to a pain doctor. I was very upset but what could I do. So about 4 years ago I started seeing my pain doctor, who I like very much. Right off she said that I was on too much pain medication and that she was going to start to wean me down. I said OK, what can we really say? Over the years she has really not weaned me down for some reason or another. I had several surgeries and needed post-op medications. I am currently on opioid pain meds. These medications work well for me and I can go about my day for the most part. Now she tells me that “we” have until January 1st to get me down to the new guidelines the government is putting into place January 1st, 2019. Oh and she tells me that I am way over the guideline. She has decreased my medication for this month. I imagine next month I will get put down further. I live in New Hampshire and like everywhere else we have what the state calls an “opioid epidemic”. When this issue first started it was called an “heroin epidemic” and they were concentrating on illegal drug users. That was great! These people were going to get the help they needed. Then when the state renamed it they started going after us, chronic pain patients. I have a HUGE issue having the government telling me and my doctors what I can and cannot be prescribed for my pain. Having the government telling me how much pain I am in and what type and strength of medication I can be prescribed for it! The government is stupid if they think going after chronic pain patients is going to help the opioid epidemic, it is not! Many, many good people have had there medication ripped from them with no notice. instead of coping with the severe pain they have committed suicide, or have gone to illegal drugs! Yet here in NH we have methadone clinics and safe injection stations where the addict can get there methadone and or get a clean needle and inject there heroin. If they are in a methadone program and there urine tests dirty they do not get tossed from the program like we would they get a higher does of methadone! WHAT IS WRONG WITH THIS PICTURE!?!? I feel powerless in this issue. I do not want to have to go back to using a walker and needed help with dressing and bathing! Not being able to drive my car or enjoy my family, not being able to take my grandchildren for the night. Oh no thank you I do not want that life back! Most of all I feel it is NONE of the governments business to be in any of my healthcare decisions! God bless you all!

10. I have a spinal cord tumor and Degenerative disc damage in several discs. Bulging discs and a fractured vertebrae that never healed correctly.
    Needless to say I’m in pain all the time.
    I had my pain meds cut in half. Gone through months without meds because my Doctor left the area. Trying to find a new one was extremely difficult. Pain clinics denied me once they found I had a tumor. My meds give me about 30 to 40% pain relief. When my tumor acts up my medication doesn’t even begin to touch my pain. I think our country forgot about the pain patient. Please stop forgetting about us and treat us as a patient not an addict.