Misdiagnosed...Fibro/Addison's

Darkice

Dearest B. Carter- I am 38, and for years I was told that I had chronic fatigue syndrome and "to just live with it!" In May this year I had what is called an Addisonian crisis (if you know anything at all about Addison's disease - you'll know what that is) my blood pressure dropped to 80/50 at the time of admitting to he hospital and when the team of six (6) doctors that were working tirelessly on me through the night to ensure that I lived through it brought in an endocrinologist it took him 15 minute discussion with me, he immediately ran the ACHT blood test which requires blood draws in increment of 30,60, 90 & 120 minutes ON THE DOT - otherwise the test can be flawed! The phlebotomy tech. that drew my blood was a "blessing" she ensured that my test would not have wrong results by setting her watch with an alarm 5 minutes fast to give her time to get to my room for the draw. I was grateful! Although I hoped the test would come back (-) negative. When it came back however it was conclusive and the diagnosis was also conclusive - I do indeed have Addison's disease without a doubt, my cortisol levels were barely readable for any of the 4 draws taken. The endo. doctor came in and gave me the results himself; not my PCP - which I thought was a little different ( and was really appreciated ) I also grabbed his hand in tears and thanked him for probability of what he did just saved my life. When I looked him in the eyes I told him that he may not hear it on a daily basis, but I personally wanted to tell him that his decisions change the directions of peoples lives on scales he will never know and the news that he just gave me has changed my life forever, and because of it - I am ALIVE! Because of his actions I know how to stay alive.

I don't know if anything I have said has even helped you - but I can tell you that the BEST choice to seek for Addison's disease would be an endocrinologist (or hematologist) - they are knowledgeable in the disease and know how to treat and diagnose.

I wish you nothing but the best of luck in all you do and all your health!

Let me know how things go.

Always in thought-
Darkice

Bcarter

Darkice,
thank you for your reply.You have helped first by knowing I'm not the only one that knows what LIMBO feels like. I hope they (indicrin Dr.) figure it out before another attack happens to me.Thanks again.
Bcarter

Darkice

B. Carter - something I was thinking and forgot to ask you about was are you taking any steroids for your Fibro diagnosis? If so that could very well have throw off your addison's test because it helps produce the hormones your body requires "cortisol" and "Aldosterone" so be sure to mention if your taking these meds to your doctor ....

I hope I got this msg to you in time.

With you in thought!
Darkice

Bcarter

Darkice, thanks for the info. No, I'm not on any steroids. I take Cymbalta 30ng Lyruca 50mg,zanaflex 4mg 1or 2 and 3 naproxon on a regular day, if I can't get out of pain I increase the Lyrica to 100mg. I have allot of inflamtion which they don't tend to see in fibro and I have to take Lovocain injections In my loe back muscel my hips and on top of my shoulder I think I should be on steroids and something for my blood pressure. It has been so low for weeks now like 80/50 and I feel so week and tired.
Today I hope I get my test results back. I pray it will be the test that tell's me what is wrong.
I hope you are doing well and keep in touch. Thanks,

Bcarter

Bcarter

Darkice, thanks for the info. No, I'm not on any steroids. I take Cymbalta 30ng Lyruca 50mg,zanaflex 4mg 1or 2 and 3 naproxon on a regular day, if I can't get out of pain I increase the Lyrica to 100mg. I have allot of inflamtion which they don't tend to see in fibro and I have to take Lovocain injections In my loe back muscel my hips and on top of my shoulder I think I should be on steroids and something for my blood pressure. It has been so low for weeks now like 80/50 and I feel so week and tired.
Today I hope I get my test results back. I pray it will be the test that tell's me what is wrong.
I hope you are doing well and keep in touch. Thanks,

Bcarter

sleepymommy

B. Carter--YES! I was diagnosed with fibromyalgia a few years ago and continued to get worse. That diagnosis never sat well with me. Although I don't have a definitive diagnosis of Addison's versus secondary adrenal insufficiency yet, I just found out that my ACTH is only 5 (normal over 10) and my cortisol stimulation test didn't quite double so something along these lines is going on here. I was just started on steroids for adrenal insufficiency this month and am awaiting followup. See my other post for details, but anyway, yes, I was misdiagnosed with fibromyalgia.

iamelizabeth

I was diagnosed in 2008 with hypothyroidism but remained symptomatic. After a thyroid ultrasound with an endo, I was diagnosed as having hashi's in march of last year. Since then, I have been diagnosed with chronic pain, chronic fatigue syndrome and fibromyalgia. I was just diagnosed with adrenal insufficiency after my cortisol saliva tests came back indicating no steroid production. I have only been able to talk to my doctor via phone yesterday so I do not know his course of action til I see him on my next appt. In 2 weeks. I am not surprised at all with the saliva tests. I do not think the prior diagnoses are misdiagnoses because I do feel that fibro is a secondary condition in relation to the other autoimmune diseases I have. Although I possibly have addisons and I do have hashimotos, I strongly feel that the diagnoses of fibro is accurate and is part of the bundle of illness's I suffer with. I was on the lyrica last year with tremendous side effects. I now take neurontin, which seems to help some in conjunction with flexeril and elavil. I have read that fibro can occur if underlying conditions are not diagnosed and treated. I strongly feel that I will suffer with fibro for the rest of my life since autoimmune disease usually has no cure, just treatment of symptoms and replacement of hormones. It just amazes me how we can have several autoimmune disorders to deal with and they are generally diagnosed after great suffering in the people they effect.

jenwill2

<i>It just amazes me how we can have several autoimmune disorders to deal with and they are generally diagnosed after great suffering in the people they effect.</i>

Story of my life. And the lives of most fibro patients, I suspect, whether they know it or not.

I am married to a Dr. and didn't get diagnosed w/Addison's until we'd been together 2 yrs-- and then only by chance (I saw a shrink who had a mild form herself. SHe told me to get tested.)

The worst part? After hearing many-a-convo between docs (and talking w them as a doc's wife- as opposed to a patient-) I can say that almost all docs think fibro patients are universally nutty.

Guess what makes anyone/everyone affected nutty? Psychological changes from Addison's (not producing cortisol!!)

Also, it drives me mad to consider that FM is such a murky thing to diagnose and treat whilst low-functioning adrenals are easily diagnosed-- but only internal med docs/endocrinologists etc. even consider running them.

Why is this? Bc of little familiarity and communication across medical specialties. Symptoms are treated according to the type of Dr. one sees.

Surgeons try to solve problems using the tools they know-- scalpels. Same for Pain docs and pain meds/blocks/pumps etc.

Also, the AD is a spectrum disorder. Most docs are black-or-white personalities-- ergo, if your numbers are 11 and the cutoff for normal is 10, you will be told you don't have said affliction. (Nevermind the variances that occur daily-- tomorrow you may score a 9!!)

__________________
Regards--
JW
"Consistency is the last resort of the unimaginative."
-- Oscar Wilde