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my docs are at a loss...can you help??

I am hopeful to find answers or help with looking for them. I am a 44 y/o female who was dx'd with panhypopituitary disease/adrenal insufficiency x7 years ago. THOSE diseases are currently taken care of. Meaning, I am followed closely by my endocronologist and primary care docs and all labs pertaining to those diseases are "normal". However, prior to getting my dx my life came crashing down. Here is a history....
Before my dx I was a very thin (5'10" 145 #), athletic, energetic mom of 3. Was always going and working out (borderline addicted to exercise-worked out everyday of the week atleast 2 hours per day). Only complaint in life was I have had migraine HA since the age of 4 and hypoglycemia since early 20's. No biggie. One day at the gym, went in to anaphylactic shock....after a week in the hospital was dx'd w/idiopathic anaphylaxis. This is when I started gaining weight. Like 80 lbs in 2 months! Got incredibly fatigued to the point that I could barely wash my hair. Felt sick ALL THE TIME. And could not tolerate exercise any longer of any sort. I am still unable to tolerate exercise...even mild exercise. Went to multiple docs...was told my problem is I was fat and needed to loose weight. ????? Had another episode of anaphylactic shock and found an endo who finally looked me in the eye and said he thought he could help....after many many tests etc...was dx'd w/Panhypopituitary and adrenal insufficiency. I have the rarest type of pituitary disease meaning it is not due to radiation, bloodloss during pregnancy or a tumor, or injury but due to idiopathic reasons and as well is not the type that can be reversed after a certain amount of treatment. This was confirmed by the endo dept. at The Cleveland Clinic in 2005. I will have it for life. But can live a "normal" life with treatment. So, I take Humatrope inj. (human growth hormones), steroids, and other drugs to support the systems that fail due to my pituitary disease. IE: thyroid etc...
My issue at present is for the last few years I have suffered with chronic pain and such bad fatigue and other ailments and they cannot figure out what else is wrong with me. As time goes...it gets worse and worse. The specific symptoms are these: joint pain so bad it feels like my bones are cracking, muscle pain, fatigue that does not get better with rest and sometimes I have to sit on the stairs to get down them, sweating profusly (very embarrasing), watery eyes, sometimes itchy skin, abdominal issues (diarreah,nausea, sometimes constipation), sometimes fevers. The pain is joint pain and muscle pain. My legs, back, shoulder joints, etc...The pain can be so deep and sometimes it feels as though the inside of my bones are on fire and the heat is radiating out. I lose my balance at times and my short term memory is really getting bad. it seems to come in "flares". I am in the midst of a flare right now and doing really bad. When I get this bad I feel like I am not going to get any better. The only thing my primary care doc will give me for pain is Lortab and to be honest, they only ever took the edge off my pain and they don't really do that anymore. So I suffer A LOT. I had to use a wheelchair on my last vacation because of the pain and fatigue. =(
I have had labs to test for lupus, MS and all sorts of things that all come back normal. I keep thinking maybe there is something I forget to tell the docs. You know? Like I live with this so much that I taken  for granted that I have told them everything?
Sorry I have used up so much space. I am very worried about myself. some days I can't hold the steering wheel of my car to take my kids to school. That is not acceptable to me. I need help. My husband is so supportive but there is only so much he can take. you know? i feel like if i don't get better i'm going to loose everything. I pray that someone can enlighten me. Even if you can't thanks for taking the time to read this.
Jana
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Avatar universal
Oh...forgot...
I do take many meds.
They are:
Humatrope Inj. (Human Growth Hormone)
Warfarin
Prednisone
Metformin (Tho I'm not diabetic)
Armour Thyroid
Crestor
Topamax
Potassium Chloride
Mulit Vit
Co Q10
Deplin
Relpax (PRN for migraine)
Promethazine (PRN for vomiting and nausea)
Lortab (PRN for pain)

The meds that make me drowsy I take in the evening or at bedtime so they wont effect me during the day. That is the best I can do. However, yesterday, my endocronologist told me to stop the humatrope, topamax, and promethazine to see if that helped with my fatigue and some of the pain. apparently humatrope can cause joint pain. we shall see.
thanks again,
jana
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Avatar universal
Thank you both for your posts...
My primary care doc is resistant to "lable" me with Fibro/CFS. She is also very cautious to give me anything for pain. I am currently taking lortab (7.5/500) and it barely takes the edge off. She gave me that because I was taking way too many Tylenol and it was effecting my liver. I am limited to certain meds because I take Warfarin. About 6 years ago I developed a dvt in my right leg that broke off and I got mult. pulm. emoblisms in both lungs. (forgot to mention that). Almost died. She and I both want to ultimately get me off the Lortab....but to be honest....it doesn't do much and I don't even get drowsy on it. It takes the edge off my pain sometimes...never does my pain fully go away.
I don't think I have ever been tested for Lymes disease. I will ask next week at my next appt.
Thank you all for your info.
@John...Keep me posted about you. And I will do the same. Thanks for sharing. It means a lot.
jana
Helpful - 0
Avatar universal
Sounds to me like the exact symtoms of someone with Fibromyalgia/Chronic Fatique Symtom.  Must doctors "poo poo" this but it is real.  Do some searching on the web.  Find someone who deals specializes with Fibromyalgia and Chroic Fatique Syndrone.  Please email me if this cures you as I would love to know.  My life came crashing down two years ago. In bed 16 to 18 hours a day.  No one can figure it out so I am in sort of the same boat as you.


John
***@****
Helpful - 0
535822 tn?1443976780
I was wondering about Lyme disease, have you ever been bitten by a tick, some folks dont remember and get a positive, take a look at the Lyme forum at the posts with symptoms and compare. You sound as if you have a lot of pain, I really hope you get answers soon  The other thought was Fibro.,and one last thought, meds can interact with each other, what are you taking, I have had side effects from meds .
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