Living with Rare Disease and Chronic Pain: What's your story?

Posted by Faithwalker007 (Renee) @faithwalker007, Feb 13 1:21pm

Hello everyone, Renee (Faithwalker007) here. I know many have felt the impact of the “War on Opioids” and the subsequent blanket lowering of dosages of their pain medications, but I’m speaking to those who have been diagnosed or are being treated specifically for a rare disease. If you don’t know if your disease or condition is rare, go to GARD, the Genetic and Rare Disease Information Center at the NIH (National Institutes of Health website.)

Rare diseases and conditions may or may not be curable, although most are not. They may or may not involve chronic pain. However, for the sake of this discussion, we are speaking of those that are incurable and involve no cure and severe chronic pain.

THE DISCUSSION TOPIC QUESTION is as follows:

HAS THE REGULATION AND GOVERNMENTAL AUTHORITY IN THE REALM OF HEALTHCARE AND THE DISPENSING OF OPIOIDS AND PAIN MANAGEMENT IMPACTED YOUR QUALITY OF LIFE AS A RARE DISEASE PATIENT and if so, HOW? Do you have any suggestions to make?

This is RARE DISEASE MONTH and I’m determined that our battle is heard but first I need to know from you the impact .

HAPPY VALENTINE’S DAY TO ALL FIGHTING RARE DISEASES. NEVER GIVE UP!

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WHAT IS ARE RARE DISEASES? Ehlers Danlos Syndrome, Charcot-Marie-Tooth disease, Congenital muscular dystrophy, CRPS, and so on. We may have one but that doesn’t mean we don’t deserve treatment or pain relief. Just because our disease is “rare” or hard to treat or impossible to cure at this time does not mean it is impossible to manage.
Usher in this new year of love, peace, and hope with the determined will and spirit to see the time of chronic Pain and rare disease persecution come to an end.
Tell your story here. Maybe the Mayo Clinic gurus in this group can offer to ways to fight your pain that you haven’t tried or thought of yet, or offer you a choice which may work! Never give up! That’s my motto

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What is my rare disease and our story? Complex Regional Pain Syndrome has been around in the United States since the Civil War, or at least one type of it, Type II or Causalgia.
I developed Causalgia after having my total knee replacement surgery.

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Hi Renee- My name is Kim and I have Myotonia Congenita, had it my whole life and never got diagnosed until 4 years ago when I fell at work. My PCP got me in the Mayo and that is where I was diagnosed. I always thought it was just me.

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I was diagnosed with CRPS type II from car accident injuries (plus a lot of other health issues from the same cause) and it’s severely painful. Costochondritis is another and the list goes on.

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@kimcvi

Hi Renee- My name is Kim and I have Myotonia Congenita, had it my whole life and never got diagnosed until 4 years ago when I fell at work. My PCP got me in the Mayo and that is where I was diagnosed. I always thought it was just me.

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I am so glad you finally got an answer! I’m sorry it took so long. It seems the way it usually goes though.

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I could say a few more but they aren’t clinically diagnosed. LOL

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@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

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Thank you Renee, I have only come across one person with MC, kind of feel alone, but being here on Mayo Connect even though no one has this I don’t feel so alone here🤗I can relate to the pain, anxiety and frustration so these people may not have what I have we ALL pick each other up and the battle isn’t so lonely🥰💕

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@jesfactsmon

@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

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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.

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@faithwalker007 Renee I have an ultra rare kidney disease, called Type III Collagenofibrotic Glomerulopathy. This is a disease of the kidneys, where a type of collagen is building up on the filtering components of my kidneys. There is no school of thought where it comes from; there have been less than 50 ever diagnosed worldwide, and there is no cure. Eventually the progression is to end-stage renal disease, resulting in dialysis and transplant. I was diagnosed in early 2015 with it by Keck USC hospital, with second opinion by Cedars Sinai Hospital. Repeated kidney biopsy in late 2019 re-confirmed it. Right now I am Stage 4 kidney function.

I have no overt pain related to it, thankfully. There is nothing to be done, no cure. Because of the low number of confirmed cases, there is no research being done, as there is no money to be made there. Sad, but true.
Ginger

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You need to join RDLA, and become an advocate. NOBODY should have to wait and die or get a transplant. The FDA and scientists should be working on medications and a cure for you! Hop on board now!

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