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 .

@gingerw

@faithwalker007 @jesfactsmon @bustrbrwn22 @lioness There is one documented case of a transplant for a patient with this condition. I am not in pain, so there is no opioid or pain med issue.
The hitch-in-the-git-along, for me, presents an interesting dilemma. I also have multiple myeloma, and start treatment next month [we were waiting for me to get the Covid vaccine doses before starting treatment]. I cannot be a "normal patient", gotta be a challenge. Hey, I have been a rebel all my life, why wouldn't it be different now?

I cannot be considered for a transplant until after a round of chemo, a Stem Cell Transplant, then wait at least a year. My sister bless her heart, offered to be evaluated as a living donor, but now it looks like it would be 3 years before a transplant opportunity. She will be 77 then. My case is unusual, as the mm is not the cause of the kidney issue, or vice versa. It seems all my health concerns are autoimmune, so my body is quite literally at war with itself. I am blessed to have a great care team, and hope my situation may lead to answers for someone else.
Ginger

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All rare cases are “unusual” or they wouldn’t be rare! That’s why they are not normally seen and have “orphan” drugs and we’re supposed to be eligible for drugs in the final stages of testing, etc.
Not because we’re the norm but because we’re not. To be treated as if we are and be put in checklists as if we are is contrary to the very thing RARE disease protocol means.

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@lioness

I don't have any rare disease but my story some of you know but for the new people I have 2back fractures Impinged nerves , fibromyalgia and had by pass surgery which will be 25 yrs old on the 18 Feb I had my 1st covid inj and on 22my second I'm concerned now as I have had s.o.b when walking low grades never had any problems before . I have Macular degeneration and Glucoma also I don't know how my heart will react to my next shot 🥺 We are all pain warriors but this concerns me because of my heart That's my story Growing old isn't for sissies .Good luck Ginger and us all

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SOB is common with the first Covid vaccine. Give yourself a chance to process it before resuming daily activities.

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@faithwalker007

You are definitely at war. Good thing you aren’t fighting this war alone! May I use your case for as an example of asked for one at the RDLA meeting in DC at the end of the month?

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@faithwalker007 Yes, no problem.
Ginger

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Thank you.

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@faithwalker007

SOB is common with the first Covid vaccine. Give yourself a chance to process it before resuming daily activities.

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@faithwalker007 Thanks I will but still it's a concern since my by pass what will the next one do ?

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@lioness

@faithwalker007 Thanks I will but still it's a concern since my by pass what will the next one do ?

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If you’ve had the smallpox shot, I would think you would simply have a mild response. If not, expect your body to launch a full immune response.

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@faithwalker007

If you’ve had the smallpox shot, I would think you would simply have a mild response. If not, expect your body to launch a full immune response.

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@faithwalker007 Yes I had the smallpox vaccine I should be fine and will be glad when it's over

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@faithwalker007

SOB is common with the first Covid vaccine. Give yourself a chance to process it before resuming daily activities.

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@faithwalker007 may I ask what is SOB?

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Hemochromatosis in all its variations is a rare disease. Per your suggestion I did double check this. It has no cure and the treatment used to keep it in check is definitely unpleasant.

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@bustrbrwn22

@faithwalker007 may I ask what is SOB?

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@bustrbrwn22 Shortness of breath
Ginger

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@gingerw

@bustrbrwn22 Shortness of breath
Ginger

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@gingerw. Thanks. Sorry to ask such stupid questions!

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@bustrbrwn22

@gingerw. Thanks. Sorry to ask such stupid questions!

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@bustrbrwn22 No problem, There are a lot of abbreviations here that I don't understand, either!
Ginger

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