Help with CFRD

[Rickengelage]

Hey everyone,

A month or so ago i have been diagnosed with CFRD, I have been walking around with it for 1-2 years without knowing it.
It left me really tired and fatigued for those 1-2 years.
It also caused me to lose alot of weight withing a year, and a huge lungfunction drop of about 30% fev1

Now that it is finally diagnosed one month ago, im finally getting treated for it with insulin.

But i still feel really tired sometimes and my weight isnt improving super fast or anything.

So im wondering, how long did it take for you guys that were diagnosed with cfrd to see improvement after getting treated with insulin?

How long did it take to feel better again? And also, what were some things that you did to improve faster?

Things like diet, excersise... What helped and would u recommend to me aswell?

Hope anyone has any tips for me dealing with and treating CFRD!

Let me know!

Rick.

 

[imported_Momto2]

Rick, I was in a similar boat 5 months ago. Almost identical actually, including the FEV1 drop. Add on serious chronic reactive asthma from my immune system going haywire. I got my blood sugar under control pretty quickly and my A1C is now about 5.4, but I am STILL am tired, and my FEV1, despite daily exercise has not improved and is in low 40's. In my case, I had gained weight, which I worked hard to drop and am now a good normal weight. My diet is pretty tightly controlled, and my blood sugar number are great.....but I'm just not bouncing back. It's very frustrating. Also, due to the high blood sugars and decreased O2, I started culturing PA, which I havent in decades. What are your blood sugar numbers like and FEV? Hopefully you will improve faster than I have.

 

[vbs420]

Rick:

You may never *feel* better.

I slowly developed CFrD and it went undiagnosed and untreated for nearly 10 years. The diagnosis was extremely stressful, and the clinic was in disarray and couldn't decide how to treat my CFrD.

That first shot of insulin felt like a shot of opiate. I could feel my body tingling. I still remember that feeling.

It took almost a year to stabilise my insulin : carb : lifestyle.

I was two years injecting, and now 5 years pumping, and there are times when I still don't *feel* better.

Unlike CF, which was for me just part of life, CFrD is a change, something different. Something new to learn.

I believe, generally, that the greatest failure of CF Clinicians is the lack of attention or focus on mental health.

But back to CFrD, don't be impatient and demand results from just a few weeks of treating with insulin. Journal food, carbs, sleep, work, exercise, insulin bolus, and blood glucose. You will have to keep daily logs and analyse the data to understand the trends.

Don't forget about stress! Life stress also messes with that entire microsystem.

Feel free to DM me if you want to share a more candid conversation.

As a Canadian from Dutch immigrants, I would be curious to know how CF health care is in Nederland