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Living with Rare Disease and Chronic Pain: What's your story?
Chronic Pain | Last Active: Sep 2, 2021 | Replies (43)Comment receiving replies
@faithwalker007
Hi Renee, I can't remember specifically who had a disease that was considered rare, but I know for a fact just from my own reading of posts here on Connect that there are SO MANY that have said (as you intimated) that their doctor had arbitrarily reduced the amount of pain medication they were getting, or were cut off altogether, like Jen @bustrbrwn22 for example and lots of others. The folks this is being done to are often frantic and in a panic over their sudden and surprising situation. In no way is this the right policy!
It's obvious that doctors are feeling the heat coming down on them from the Federales with the badly executed "war on drugs". It dumbfounds me how the thing is run with such total insensitivity to the chronic pain sufferer, and for no good reason that anyone in charge can explain. Best, Hank
Replies to "@faithwalker007 Hi Renee, I can't remember specifically who had a disease that was considered rare, but..."
Well, Hank now you can say you’ve met many with Rare Diseases! And you’re right, the damage being done across the board by the government is horrendous. For those with rare diseases it’s especially dangerous because we have little to no therapies or treatments available for our conditions at all.
Connect
Well, rare diseases, whether they involve chronic pain or not are unique in that they have very few treatments available at all. And the war on drugs have really impacted our quality of life. I have made a conscious decision NOT to increase my opioid dosage to protect my providers, but it make my life much harder. Others never made that choice. They never got the chance.