What is different about Cushing’s than the way you normally feel?
Hmmm. Well, some things are just amplified. The exhaustion, for one. I get up in the morning and try to get my body moving, grab a protein bar and maybe check a few emails before I have to lay down on the couch again. I’m to the point now where I want to do things, I just don’t have the energy or physical ability to accomplish them. The headaches, nausea and dizziness are also things that I would often experience before Cushing’s, it’s just that now they are more intense and more constant.
There are other things about Cushing’s that I haven’t had to deal with before, as well. The crazy weight gain that I’ve talked about in other posts, and the fact that it’s so displaced in my torso. I have most of the typical symptoms like a “buffalo hump” at the base of my neck [attractive, I know. don’t be jealous.], purple striations on parts of my skin that are very tender to the touch, and a host of other issues.
Even though I’ve been off the steroids for awhile now, the symptoms haven’t seemed to level off yet. When I was weaning off the steroids it caused excruciating pain in my knees and legs, and the good thing is that has gotten so much better. For a long time I couldn’t bend my knees or straighten them all the way… they were pretty much stuck in one position… but I’ve gotten almost all of my mobility back in that area, which is great.
Does Cushing’s go away? Is there light at the end of the tunnel that you will eventually feel better?
It will go away, there is just no great time table for it. From what I understand, the Cushing’s developed because my body started relying on the steroids instead of my endocrine system to determine how much cortisol should be in my body, so the endocrine system stopped functioning altogether… and as a result my body has produced WAY too much cortisol. Now that the steroids are out of my system, it’s just a wait and see game until my endocrine system starts doing its job again.
I’ve read that, after my system starts functioning again, it can take anywhere from six months to two years to get back to normal. [I choose not to think about that daunting fact for very long.] Some research also says that my body could go through withdraw from the cortisol as it decreases in my system, which would feel something like having the flu. I’m not too worried about that because I don’t think it would be that much different than how I’m feeling now.
It also seems that all this extra weight won’t just “melt away” as the cortisol leaves my system. While I’ll stop gaining, I’ll have to lose it the old fashioned way with diet and exercise. But since I need a walker to get around the condo, obviously I don’t think exercise is going to be all that effective for me. Let’s just say I’ve learned to have a lot of patience along the way. :)
I have taken steroids before for severe allergies and I felt like a million bucks on them… the Dr. now won’t give them to me & I know if I had them I’d get over what I have quicker. How do you feel about that? Should one avoid steroids for the simple things?
Let me preface this with saying I have no medical degree… just first hand experience. Now, to answer your question: YES I think steroids should be avoided for the simple things.
Here’s the deal: I never took steroids for the simple things or to enhance the medications I was normally on for the spondylitis. I would have been in less pain if I stayed on steroids, but there are so many complications to long term use. There is weight gain, skin thinning, potential damage to your eyes and certain systems, you are less able to fight off infection and a host of other problems.
For me, it also proved true that any time I went off steroids my “normal” pain and issues would flair up worse than they were to begin with. When your body gets used to being helped and you take that help away, it will sometimes rebel because it wants it back.
I typically only took steroids when my lungs were in bad shape and I couldn’t breathe well, and when we wanted to try different medications. Steroids were needed in that case because when I would wean off one medication before starting another, my inflammation would get out of control and I simply couldn’t stand the pain. Also, I have had reactions to almost every new medication I’ve tried, so I would have to use steroids to stop the reaction in order to avoid that pesky issue of my throat swelling shut. I know, small details. :)
I obviously have been on and off steroids a lot in the last 15 years for the reasons I mentioned above, and I also had to be on higher doses for longer periods of time to manage the problems [sometimes starting at 100mg a day, other times around 60mg a day]. The frequency and dose probably added to my susceptibility of getting steroid-induced Cushing’s, but the truth is it could happen to anyone on steroids at any time. It’s just the luck of the draw.
All of that to say, in my opinion, you are better off not playing Russian Roulette with the drug. Save it for times when your life may depend on it rather than for the little things that you can get through without it. Now that I’ve developed Cushing’s, odds are if I went back on steroids I’d be right back in this position… which means I never plan on using them again. That means I am going to have to be extra vigilant about not getting sick, it means I can’t imagine that I’ll get to try new medications safely, it means it’s no longer my “back up.” Obviously you should do whatever you and your doctor think is best, but that would be my two cents. :)
How do you stay so positive through it all? I don’t know if I would be strong enough.
When people say that to me, I usually tell them they just haven’t had to prove it yet. You can’t know how you’ll react in any given situation unless you’re put in it, but the simple truth is that life is going to continue happening whether we want it to or not. And God gives us the tools and strength we need when we need it, not before.
How do I stay positive? I believe. I believe He loves me and is always with me. I trust that whatever comes, He’ll help me find the road that will lead to something positive. Sooner or later, every story has a conclusion. Right now I’m waiting for this Cushing’s chapter of the story to conclude, and I am secure in the knowledge that He already knows how it will end and what will come into my life next. All I have to do is walk down the road. It’s pretty easy to be positive when you trust the One who already knows the outcome.