In almost ten years time, I've learned to pick up on the subtle signs that an Addison's crisis might be underway. Of course, these are my personal signs, but I've heard of fellow Addison's patients having very similar experiences. Most of us with Addison's know about the extreme nausea, diarrhea or stomach and back cramping, but I have had this disease long enough to pick up on other slight "tips" that a sinister crisis is lurking a few steps behind me.
Most of us have been on an elevator and as we descend downward, the elevator makes stops at various floors with a momentary hitch upward and downward; in that brief second, it feels as if you are floating and then sinking. Sometimes, your tummy may drop. Other times, your knees slightly give and you reach for the railing as your brain catches up. In that moment...with all those sensations...that is one of the bodily feelings that I get before an Addison's crisis hits. I may be walking along and suddenly have that "elevator sensation" hit me, out of the blue. My body feels as if it literally sinks, then rises. Just like on an elevator, it's an all-over sensation, from head to toe. If I have that kind of moment, I know it's time to go take an extra 5-10 mg of hydrocortisone, at least. Quickly.
Another weird thing that happens when my synthetic adrenaline needs to be upped a notch is when my feet start to drag. Oh, it can be very slight. For years, I often ignored the very little difference in my footing, yet I still noticed. However...now, I realize that this little bit of difference can signal that something very big is on the horizon. Downstairs, throughout our house, we have Italian Porcelain flooring - it's cool and lovely and has standard grout lines. Very typical. But, on days when I am not completely aware that I need extra hydrocortisone or when it's the end of a long day and I am more tired than I want to admit, sometimes, my foot will not lift up adequately enough to clear this itsy-bitsy ledge. It's always amazing to me how my foot can actually drag and catch on the near-non-existent grouted tile edge. Of course, after all this time of having Addison's, I know that it's not an inconsequential issue. My foot dragging is a symptom of huge underlying monster trying to stealthily close in on me. These days, it is clear that if my feet seem to stumble more than usual, I need to take action.
Of course, there are times when a full blown out Addisonian Crisis takes hold. I've learned, the hard way, that these can happen, even under the best of treatment. It seems that some people are more susceptible to a state of crisis than others. Perhaps an underlying condition or additional health conditions are partly to blame...those may stress the body in ways that are not often clearly understood soon enough. Those bodies, under more constant stress will, no doubt, have more challenges with controlling their Addison's disease. But, as for a crisis situation, those symptoms are for another time. This account is simply for the little pesky signs that I encounter when my dosage could use a bump.
Even now and then, after almost ten years of experience with Addison's, there are days when I feel an overall sense of unwellness. Sometimes, my vision will go a bit blurry. I just feel rotten - dragging. There is not enough rest, not enough exercise, not enough steroids...not enough of anything to alleviate this kind of malaise. There might not be anything to be found that is finger-pointing wrong, not in particular, just a sense of dragging and an incredible, oppressing heaviness that can't be shaken. This is the bad business-end of Addison's disease. The hard truth is...there are times when I take extra meds, but there's nothing that can wash away the mysterious pressing upon my body. Those are the days that harsh realities in this world come to light and I admit that Addison's Disease can be unkind, but my determination can be just as formidable.
I get the feet dragging thing too! I've had it for several years, and it makes me wonder how many of my symptoms have been present in my life for a long time as my adrenals were failing. 3 years ago I was diagnosed with hyperthyroidism and now that I am being treated for Addison's the hyperthyroidism is gone. I've always had a tough time with low blood sugar, lots of stomach issues, trouble with anxiety and blacking out in the morning. Now, I don't have very much trouble with my blood sugar and I never come close to blacking out in the morning. It's strange to think that I've been developing this disease for years.
ReplyDeleteI get the same 'lead weighted ' feeling as I describe it. You mentioned having had secondary addison's first. I'd like to know more about it. I've had hypothyroidism and high blood sugar problems as well as stomach problems.
ReplyDeleteSuzanna...I too look back and am tiny bit wiser in my hindsight about the lurking symptoms related to Addison's. Like you, I had a slow decline, as if my adrenals were sputtering to a complete stop. The low blood sugar, blacking out, etc. is something I dealt with as well. Being on my meds helps prevent all the irregularities with the bodies processes, but it's never as good as the healthy God-given state I had been blessed with in my "original" form. Our man-made treatments are decent, but not as perfect as we'd like for them to be. As a person with Addison's you have to really listen to your body and be in-tune with it on a heightened level. I believe it takes hard-learned experiences to get finely tuned in to your body - I'm not there yet either. Maybe it's a lifetime of learning...Do you think the hyperthyroidism was actually Addison's all along?
ReplyDeleteHollyM and Suzanna...it's hard to describe to others about that lead-weighted sensation that can be such a part of a person's life with Addisons - weird that all of us really relate with that particular symptom. Initially, my body attacked a part of my adrenal glands and my pituitary production of ACTH gave out. Eventually, my entire adrenals gave out. I was told they "withered." Just great. But, it still is essentially the same...just that those who have "Secondary" Addison's have an additional issue that CAUSED the adrenal issue, so the Addison's Disease is literally secondary to another condition. That's why some doctors want to hear "Secondary Adrenal Insufficiency" because they need to know it is secondary to another condition. Although, some doctors are idiotic and just want to hear the word "secondary" because it makes them feel as if they understand the disease, yet they have no idea of what it really means, The person STILL has Addison's and all that it entails. I had one top endocrinologist with Baylor tell me that, essentially, Addison's is Addison's... Primary or Secondary just tells the origination. Both need steroids to live another day and thru times of stress. Primary or Secondary...bottom line is...it still is the same bottom line for each one. I've had both: Secondary & Primary. My adrenals finally went kaput to the core. The ONLY difference from Secondary to Primary with meds was Florinef. It's the same. Just the Secondary diagnosis came at a time when I was VERY VERY sick because of a big issue with the pituitary, brain blood flow/possible tumor pressing on the pituitary (pregnancy related) and undiagnosed adrenal failure for far too long. Top endocrinologists suspected that my adrenals were "sputtering" and going into partial failure, then rallying a little, then finally into complete failure in 2001. Looking back, we can see how it all was a puzzle coming together, but how could we have known? I nearly died because of Addison's Disease and a very slow diagnosis - not for lack of trying on my part and that of my immediate family, but for a lack of medical understanding with the doctors I saw. I'll write about all of this again in a post. Sometimes, I feel so overwhelmed by all that I've experienced with Addison's and it's hard to get it all out...it's kind of mentally difficult to sort through all that has happened in the past ten years that relates to Addison's, but I'm trying to be patient with myself. It's not always so easy. :-)
Hi Lana,
ReplyDeleteI'm not sure if I ever had hyperthyroidism or not. I was diagnosed with Graves' disease first, but my doctor says that some people can just go without medication after awhile. Hyperthyroidism can be caused by a traumatic time in life, a virus, or so many other things. I wonder if my endocrine system was just really suffering because I was developing Addison's? Originally my doctor said the hyperthyroidism caused Addison's, but now I think it's the other way around. I also have stage 4 endometriosis and eczema which are not an autoimmune diseases, but are believed to be related and are more common in women with autoimmune diseases. So I think it's all related somehow.
Another interesting thing in my family... My mom grew up in a farming community where a lot of pesticides were used before they were regulated by the government. She also has endometriosis and I have several cousins, multiple aunts and uncles, and two grandparents with thyroid disease. I'm the only one with Addison's- but I have a cousin with Cushings.
Anyways, we deal with it and move on, right? :)
I really appreciated your words on this post. I hope you don't mind but I used some of it on my blog. http://simplysuzanna.blogspot.com/2010/08/different-kind-of-tired.html
Thanks and God Bless!
Suzanna, I don't mind at all - use as anything from my posts/site as you would like. I am finding great comfort in learning about other people with Addison's. Our similarities are striking. Endometriosis runs rampant in my family as well.
ReplyDeleteYour comments about your mother growing up in a farming community with pesticides, and about multiple family members with endocrine disorders gives me reason to pause.
I currently live in La Porte, but grew up partially in Deer Park (and also Scotland for a while) but the first two towns are HEAVY petro-chemical towns. My father was a supervisor in a plant that manufactured fertilizer. BIG TIME fertilizer. In fact, the Shell explosion that killed several workers around 1989-1990 was directly next door to my dad's plant. Friends of the family died that day. The blast knocked several of them off their feet---it blew out lots of windows around town, etc. If you've seen "Urban Cowboy," that's the stereo-typical area in which I grew up. As a funny side note, I have also lived, worked, worshipped at church and played in a world that includes astronauts and aeronautic life.
Thankfully, I've had broad experiences in life. But, like you, I've often wondered about the correlation between the chemicals closely mingled with my upbringing to my developing Addison's Disease. My dad had to walk directly to laundry room every day at the end of his work day so he could shed his fertilizer covered clothes.
I wish I understood all of this better so I could help. I find your endocrin issues and other health problems to be very interesting; I would also be suspicious of which one, thyroid or adrenals, actually failing first. Are they regularly checking your other glands for failure? I've been told, if you have Addison's, you should take care to keep checking for multi-glandular failure.
The dark side to all of this is the sad likelihood that many people are suffering and remaining undiagnosed with Addison's. I am fortunate enough to look back and to try to put the puzzle pieces together. I believe, it's very important to do this, especially because Addison's is still such a rare disease that too few people are even motivated to do such a thing. If this disease was such an "ordinary" sickness, then we would not have such ignorance in the medical community. If a person in the medical field knows of Addison's, they are usually above and beyond average in their overall knowledge. The shallow "answers" we often get are not sufficient. And no, we shouldn't settle. I am glad we are digging. Although, we search and still find much of it remains a mystery.
Hi Lana, I'm up late and reading some of your older posts. Just finished this one and all the comments. Interesting.
ReplyDeletemo
Hi, Lana! I just found your blog. I recently began one myself, having been diagnosed last November with Addison's. It is so helpful to read about your day to day experiences and symptoms. Doctors are helpful of course, but are quick to tell me that a particular symptom that I am having has nothing to do with Addison's....but living with it is much different that just reading about it in a medical book. I am encourgaed after reading your blog because I see some of the same experiences and symptoms that I have as well.
ReplyDeleteHome Ideas --- I am always wanting to say that I'm sorry about someone being disgnosed with Addison's disease, then I think about how fortunate a person is to actually BE diagnosed, in time. I am glad that you have found my writings about living with this disease to be helpful in some manner. I wish, in the first few years following my diagnosis, that I could've found someone who was writing about living with this disease on a level that the majority of people can relate to. It's difficult to find that sometimes because we try to keep going and often ignore simple truths. However, I've found that I can better face these truths by confronting them full-face. My hope is that my honesty will help others to not be afraid of this disease, but feel empowered by their knowledge of the slyness that this condition can bring. Subtle symptoms or hard-hit changes are better recognized when we discuss them. I've learned a great deal from the people I'm communicating with as well. I appreciate every single person who reaches out. It helps to know that you're not alone, even though hardly anyone around us has heard of this condition. It's out there...we're out there.
ReplyDeleteKeep up your personal research. You'll be far better for it and will probably find yourself to be a mini-expert in this area of health...with far more knowledge than any medical training could teach. As you have found, not all medical literature reflects current changing information AND lax attitudes relating to this disease. I'm hoping that will continue to improve over the next decade.
Thank you for letting me know you are reading. I get many emails, but I usually see blog comments much sooner because I'm very slow to check email. Augh!
Lana
Hi Lana -- I have been having that "elevator sensation" off and on for months now. I was just official diagnosed with Addison's yesterday. After going round & round with doctors for two years, I am so relieved to finally be diagnosed before I ended up near death. I had a friend say "I'm sorry" when I told her of my diagnosis. I told her I'm NOT sorry. I'm so fortunate to finally have a proper diagnosis and a plan for managing my health. I did work my tushie off to be my own best advocate and finally get a doctor to listen to me, educate himself, and get me some help! Persistence DOES pay off and probably saved my life. Thank you for speaking out and increasing awareness about AD and for providing support through your blog for others who feel so isolated with AD.
ReplyDelete:) T.J.
Lana, Thank you so much for your blog. I was diagnosed with Addison's disease and have done a lot of research but have never met anyone that actually has Addison's disease. My Endo is a good one but I still have problems managing this disease when I get a cold, etc. Reading your blog gives me a lot of insight. I have been sick for years so the diagnosis is a good one for me. I have battled with various health issues including,stomach issues, chronic sinus and the inability to get over a cold/flu, throughout my life. So Addison's disease and APS II (Addison's and Hashimoto's) was not a shock when I went to and Endo for testing. Can we keep in touch by email? I would truly appreciate this. Thanks again for blog and your honesty. MA
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