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Bone Scan Day #ChronicPain #Backinjury #BackPain #RheumatoidArthritis #MastCellActivationDisorder

Felt a little defeated today, had to get another PET scan with Radioactive dye. Since my 6th surgery in April, I’ve had swelling in my back and increased bone & breakthrough pain. We are checking for stress fractures from my last surgery.
I didn’t know that 6.5 years after my injury & accident, I would still be searching just an ounce of pain relief😔I’m on a waiting list for a new type of stem cell procedure in my disc.
It just feels hard…
I want to be happy, outgoing, dating, working, getting married, having a social life, experience life’s joys, become a mom, I’m already a fur mom♥️I just don’t have the energy, the pain barely allows me to get through simple tasks each day. How do you make energy allowance for social activities when your symptoms are at an all time high?

For now, I’m going to keep doing whatever I can to find that magic thing that helps reduce my pain. Because I still feel a glimmer of hope that it’s out there 🪄✨

#BackPain #Backinjury #ChronicPain #RheumatoidArthritis #MastCellActivationDisorder #AnkylosingSpondylitis #Intractablepain #Anxiety #SpinalFusion #sacroilitis

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The #CDC Site for Public Comment on#Opioids

Just in case anyone wants to share their story regarding pain medication and how it has helped them, I've submitted a story to The Mighty explaining the situation. I have a link to help, but I cannot publish it here without going against community guidelines. To access the site, please Google search "beta regulations . gov" and "Management of Acute and Chronic Pain: Request for Comment". The deadline for public and stakeholder comment is June 16, 2020.

If you have #ChronicPainor #Intractablepain please consider submitting your comment. By and large, most government officials that I've spoken with do not know how many people are losing their pain battle because they aren't hearing from us directly. We need to speak up and soon.

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My journey through a changing landscape

So the past couple of have been hard, but nothing like the past few years. I have now gone from fighting for control for FMS and ME to fighting for pain control for stage 4 breast cancer that has also spread to a rib, lymph nodes, sternum, lumbar spine, right iliac and my right femur. Why they can't just give me back the dosage I had up through February 2018? Is it really too much to ask? #MyPainPointOfView #Pain #Cancer #Intractablepain #Noonecares

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I am 7 out of 10 #ChronicIllness #ChronicPain #TrigeminalNeuropathicPain #ChronicDepression #Intractablepain

I have lived with chronic, intractable pain for over 18 years. I have had to learn how to manage my pain and my life. I have had to educate everyone around me, including most of the healthcare providers I see. The misinformation and/or lack of information about my diagnosis and the use of opioids to treat chronic pain is mind blowing. Especially when I am dealing with the medical community. Most doctors think I am on too many medications and that I am a drug seeker. Little do they know I was completely against starting opioid therapy 18 years ago. It was a doctor who convinced me it was the only thing that would help the pain and he was right. I have tried so many alternative therapies and nothing has helped like the opioids. Yet I was still rapidly tapered to half of my therapeutic dose in 2016. It’s time for the medical community to wake up and truly see chronic pain patients! We should not have to sign away our rights with ridiculous pain contracts to get our medication. We have legitimate diagnosis just like someone with diabetes or heart disease. We are not an ID number in a computer, we are human beings who deserve compassion, respect and proper medical care.

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