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Hello. I’m new.
Hello, everybody. I’m a chronic pain patient, untreated, and new to this site. I read helpful comments here. I hope I’m more in the solution than the problem, but I do find this a problem. And I tend to write about that at times. I’ve been fast tapered off of pain meds, three times. The last time I lost 20 pounds, barely over 100 to begin with.
I have fibromyalgia, Lyme disease, osteoporosis secondary to endometreosis and surgeries because the endometreosis also removed my ability to have children. I have boney structures that need surgery. I won’t do it. I will not subject myself to more pain at this time, since to date I feel the effects of each diagnosis.
Sometimes I feel very desperate in pain, but generally I get by, although I can’t leave my home due to pain. I feel very strongly about having been placed in this situation. Not my diseases, but non treatment of pain--it’s not acceptable to me.
I have been on linkedin advocating in my menial way for pain patients, and I feel our voices are being squelched. I don’t believe for a minute that this administration is unaware of this travesty occuring in the US. I am angry, but I’m learning not to allow anger to overtake me. Sometimes I just cry. Tears roll down when I realize what is happening, this attack on pain patients who cannot defend themselves. I have seen this in history, pre WWII.
My question is what can be done? Pain patients have contacted congress, senators, and representatives. I came here searching for more answers. If anyone has input, please feel free to inform.
Thank you so much.
JoAlice.
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I agree, jenatsky. It’s not healthy to be in continual pain. I’m working on a solution, but described in a comment below how it happened. Rather complicated and nonsensical, but I’m not the first. It was almost a relief to know I wasn’t alone, but because other people suffer, too.
I do want pain relief. I do not want to be placed in hard withdrawal ever again. My strength gets exhausted and sometimes it’s hard to go on, but i believe inner strength never ends, and I find hope the last thing I hold on to. I spoke with a senator’s office today, and a pain specialty clinic who’ve given me conflicting info, so we’ll see. : )
Thank you for validating that it’s ok to take medicine and to feel better. Really.
Thank you, sherryanndavis69! I hope to be able to use both also. I don’t see reason for conflict with that. Welcome to Mayo Clinic’s Pain site. I’m taken by all of the responses, I didn’t know was here until today. This is a kind website.
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2 ReactionsThank you, cantab. Will pass this on. Also nice to have a pass on the paywall. : ) Thanks.
@jasl thanks for your note. Tears are for my motherless grandchildren. I am so sad for them.
I have not heard of that but I do believe that they are on the right track.
Both my mom and I have a problem with acetaminophen. It makes us sleepy. Not the nighttime version, just the regular Tylenol.
People laugh when I tell them that…
I have been reading all of this with great interest as I also have horrible, at times, pain. And it’s true sometimes all we have is hope, tears or laughter. This site brings me all of that.
My primary doctor at my HMO has told me that she is being pressured to take all of her patients off of steroid medication for pain. And I told her that was impossible for me to live without. She said we will work around it don’t worry. She has reported that we tried to restrict my usage of hydrocodone and it did not benefit me at all so I was put back on the original dosage that they had taken me off of. She said if they are going to change my monthly amount, which they are trying to do, she will change the prescription to a two week prescription and fill it that way for me.
She has told me that nobody who does not live with chronic pain has a right to tell anyone that does live with chronic pain what they need or do not need to make it through their days. She is the exception to the doctors at my HMO and I am blessed to have her as mine.
Hugs and mostly hope and laughter to all of you dealing with all of this too.