Share Your Pain Story

1,000 Replies to “Share Your Pain Story”

1. I’ve had Fibromyalgia 15-plus years. 2 tears in my spinal membrane that leaked over until they eroded the facet joints. Sciatica, Plantars fascitis and more. 2 months ago I figured this situation would affect me but I was not prepared for this! My rheumatologist of 10 years tells me point blank she’s removing me off of both my pain medications I’ve been on without ever having “one” problem! My liver is great. I don’t drink, don’t smoke, and I take care of myself. I lost 29 pounds down to 151. Thought I was doing everything right. I cried when I found there IS someone fighting for us! It’s DISCRIMINATION! My depression has hit an all-time high as I’ve been in bed a good 6 days now. They didn’t just put me back in debilitating pain, they stole my life. My joy, my will. My hope, time with my young adult kids and time with my grandkids. They put nails in my coffee. I feel hopeless and don’t even feel like an American anymore. Suffering in chronic pain needlessly is cruel and inhumane. I’m a POW in their War Against Opioids.

2. I am a 25 year CRPS survivor. Disease was brought in by a crush injury to right arm and two failed surgeries on nerves. I lived with debilitating female conditions for years trying to conceive. Had one unconfirmed miscarry at home. I accepted what wouldn’t be. Had a huge hand in raising my only sister’s babies virtually one handed. Then my severe spinal problems surfaced, Fibro, then the icing, acute Lyme Infection. In 2017 Dr sympathetically chose to not start weaning my 15 year opioid rxs, then feeling unsupported in my wellness journey from Lyme I left that office. When I arrived at new Dr office there went half my meds. She then finished me off over the summer. Now after over 19 years with severe complex pain, I’m at my sister’s Neurosurgeon. I was told by PC all these years surgery was last thing a CRPS patient needs. I’ve had 15 years of (unapproved by FDA) epidurals both lumbar and cervical. Had first MRI on neck ever without pain med this morning. Ugh I feel like I am a living nightmare. Can’t feel my face in front of me but my skull hurts. I get to sleep two nights a week now for four hours. In rural upstate NY. Thanks Claudia!!! Really thank you.

3. I’m a young woman 26 years of age. I have been chronically ill since I was a real young child. I had diagnosis doctors were baffled by because I was so off on every lab, out of no where at only 9 I was in agony and still am very much in agony. I suffered with a rare condition called cushings disease from childhood well until late 2018, when I had a bilateral liprosocpic adrenaloctamy. I have NO ADRENALGLANDS. therefore without steroids daily multiple times a day I will die. I need cortisol. Cushings disease has given me well over 10 diagnosis and then some. My bones are brittle and weak, my back is beyond repair my nerves are shot and I feel like the pain alone could take me one day. Not to mention the cysts and tumors my body grows within my endocrine system and just all over. Without my pain pills I almost cant function. And if you take your medicine for the right reasons you dont “get high” you barely even get enough relief. I’m on high doses for my age but just the right amount to get the edge off. And when I have more pain then normal I usually will have to deal. This whole situation even has me not able to get my mental health medicines I had for 4 years before this.. I must say after 2 brain Surgeries and 10 others, if I had my medicine taken away there just would be no point of life for me after that. My body is beyond repair.

4. I am a disable 60 year old finished carpenter and have been taking opiates for 20 years and the State of Massachusetts is going to stop my meds !!!

5. This opioid crisis they are having a fit over is not a one size fits all! There are so many people who need their pain meds to have any quality of life! I have seen a pain management Dr. For 12 years, he was suddenly shut down due to this deal with the opioid crisis. My back pain and Fibromyalgia make it difficult to function on a daily basis. I’m currently having a flare up and just have to stay in bed, can’t function due to the pain. While seeing a pain Dr we are randomly tested for taking to much or not enough of our prescribed meds. It’s unfair to just drop us off all at once, and there is no Dr in Texas that I know of who will prescribe any pain medication. I hope they come up with something for those of us who are not abusing our medicine. It’s very depressing and changes your life to no quality of life!

6. I live with Lupus, spinal stenosis, osteoarthritis, degenerative disc disease, among other painful conditions. I also have a blood clotting disease so I am unable to take anti-inflammatory medications so the least invasive treatment for me is pain medication. If I am not able to use medicinal pain management and have to use alternatives like spinal injections I must come off my blood thinners, which puts me at a greater risk. The last time I came off of my blood thinners I had a stroke. There are no pain management clinics currently in my area, I am currently not sure what I will do for medication management. As far as I know now the nearest pain management is 3 hours away for me. I am disabled by my chronic diseases, the two strokes and other issues so that will be difficult. I had no notice that my rheumatologist would no longer prescribe my pain medication; I simply called for a refill and was told we no longer do that. I saw a spine and pain Dr and was told if you take the epideral injections we may use the pain medication but no we won’t prescribe it by itself. I asked why not since for 7 years it has been successfully working with my other medications. I don’t smoke, don’t drink, don’t use illicit drugs. I eat a diet I have agreed upon with my family Dr, I am exercising, losing weight, and even meditate for pain control, so I do all I can in what I view as a partnership with my Dr. Really I am just one of many casualties suffering of this war on opioids because the weapons used were not selective but just dropped like an indiscriminate bomb on all of us.

7. I have an intermittent, but chronic condition that causes me to have abscesses in unpleasant areas of the body. They always eventually burst and drain, but in the meantime, I am in significant amounts of pain. OTC medicines DO NOT WORK, even though I’ve found myself taking 10-30 pills a day for only a mild reprieve. For a long time I was unable to get a standing prescription to deal with the problem. One night I had to wait in the emergency room for nearly 4 hours in agonizing pain, only for them to tell me what I already knew, the abscess was about to burst and I should just wait and let it do that. They prescribed me pain meds, but could not administer them because I had driven myself to the hospital. I wrote a sincere message to my doctor, and she agreed finally that I should have a prescription available for when I need it. I receive 60 to 120 pills PER YEAR. I am not an abuser. This medicine works. Yet the last time I filled my prescription I was asked to pee in a cup, and had to sign my life away, (meaning that if they determine anything in my “screen” came back in a way they didn’t want, I could never get my medication again). So I feel punished. I responsibly use a medication for what is designed for and do not, and never have abused it, or had anyone in my household abuse it, but because of new laws, I have to take a pee test to get my medication. I am appalled, annoyed, saddened, and terribly irritated.

8. I have lived with chronic pain for 15 plus years. In my county the pain clinics have reduced my medication to the point that I can’t function. Most days are spent in bed crying in agony. I’m 70 years old and just don’t know how to go on. This week has been the worst. The pharmacy didn’t have one of my medications and would not have it for 10 days from getting the script. I have called the pain clinic 4 days and can’t get the dr to return my call. I have called the pharmacy 3 times asking them if there was anything they could do and they said No. I can’t sleep, I can’t function. I’m in horrible pain while writing this thinking how and what am I going to do. No one cares that I’m in pain. God please help me is my plea. Why do I have to live like this. Please make my pain better. Why doesn’t the pain center care about me???

9. I have had fibro and chronic fatigue for over 25 years. The fibro combined with arthritis continues to beat my body every day. Some days are worse than others as weather also plays a big part in how my body reacts. I also have migraines, and some days when they all combine together, I can barely get out of bed. I have doctored and gone through all doors I’m suppose to over the years. My general practitioner, rheumatologist, a back specialist, a couple of fibromyalgia doctors, acupucture and pain therapy. I have tried several medications. I for years was prescribed pain meds. Now the powers that be, say those pain pills don’t work for fibro. REALLY!! Funny, how they worked for years on mine, when I needed them. Now I have a marijuana license, because our state is so kind. But to me, this is just a money maker. It’s not about helping the patients. It’s more costly for sure. I have to see the state doctor twice a year, pay out of my pocket, to say OK to a license I have to pay EVERY year for. It is totally ridiculous. My pain meds did the job much better and much cheaper without lining anyone’s pocket. And to buy the STUFF is a lot more expensive when you’re a retiree and on a fixed income. I think we should let the doctors doctor, and government needs to get out of our personal business. Give back pain meds where needed.

10. This is so sad that all of us suffer because of the bad Apple’s.
    It’s not fair and criminal.
    God save us.
    I had a bad back operation fail and the surgeon messed up and crippled me. Stuck a screw in my nerve pocket and then I had another surgeon put the screw in the right place but the damage was already done.
    I also have plmd periodic limb movement disorder and a sleep study doctor gave me methadone for over ten years and then just cut me off when the feds got involved.
    I have been living a life of hell since he took the methadone away two years ago.