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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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New here, and oh so lost...

Messages
6
Location
Chicago Burbs
Hello everyone... this might be long, I hope you can bear with me. I'm a 54 yr old single gal, who was once a very happy go lucky girl, until this hit me.

I've lived with panic disorder most of my life, so that's been basically about 40 yrs or more. Back then we didn't know it was panic disorder that I suffered from so I basically became a homebound agoraphobic.

When I was finally diagnosed correctly and put on meds my life changed and I was finally able to live a normal, free life. It was so amazing!

During married life I had one thing after another 'go wrong' in my body... I think I've had maybe 15 surgeries for one thing or another...emergency ectopic pregnancy, appendectomy, gallbladder removal...etc, etc. Finally in 2005 I was diagnosed with MS and Sjogrens Syndrome. My then husband was fed up with my 'never-ending' health saga, and left a few yrs later..after 26 yrs of wedded bliss, ha! I was then subjected to approximately 6-7 years of divorce proceedings. Brutal!!! (he never did what was court ordered, continuance, new order, non compliance...on and on it went)

In 2015 my mom moved in with me due to a bladder cancer discovery...treatments...more illnesses for her, more cancer and more stress. Ack!

I was a walking, stressed out, crazy person during that time. Finally on Feb 1, 2016 the darn court case ended, and my body did something I never felt before, it crashed on Feb 3. I was stuck in bed sleeping for 3 weeks straight. My mom, whom I was taking care of, was now taking care of me and freaking out.

I have progressively gotten worse and have been to one doctor after another, all of them telling me I am depressed. Seriously? I was finally stress free, why would I be depressed? Ugh!

I am going on the 1 yr mark of my body not working anymore. I experience the following craziness...
terrible fatigue, was bed bound for six months and now I can do a few things but I usually pay it for days afterwards. I wake up every night between 3 and 4 a.m. and I'm usually up for 4 hours and then sleep again for 4 hours, then up for a few hours, then sleep again because I'm exhausted. I have really bad pain on my right side in my back where one of my kidneys would approximately be located... It has not gone away yet during this year. I can't do anything that requires much effort... otherwise my legs start to shake terribly and I sweat profusely. Chronic constipation.... can't have a bowel movement on my own to save myself, lol. (This has always been an issue for me for as long as I can remember, and I always chalked it up to the crazy amounts of antibiotics I've been prescribed as well as steroids) I have bone dry skin, hair, and my once great facial skin now gets crazy acne and weird hard dry spots on it. Nasty facial hair, eww, out of control! I've gained 50lbs. Brain fog, no memory for nothing. Can't seem to catch my breath when I get up and walk and my legs are so heavy to carry. Anxiety attacks even tho I'm still on meds for anxiety. Cold all the time. Stress fries my brain. Headaches. HighBloodPressure. And the worse thing, I get these crazy boils on my breasts...they are so painful and they don't seem to want to leave me alone ever. I have amazing grandbabies now but it's hard for me to do anything with them because I'm so tired. I've gotten sick 3 times this winter already and I can never seem to shake whatever I catch. Everybody else is well and I'm still fighting these darn colds/flu's.

Am I losing it or is it as it seems and my body is broken? I found a nice nurse practitioner who agreed to run some bllid work back in March...even though the ACTH was 167, FSH 30.30 (flagged high), Glucose fasting was flagged as well as hemoglobin a1c flagged. She said nothing but write me a note saying that I was in menopause.

I used to have a lot of friends and always planned a monthly night out for our big group and I can't do that anymore... I feel like I've lost all my friends and my social life is gone. I went to a new chiropractor last week and he has ordered a bunch of tests and a saliva test that I should get the results on next week. But he said he knows nothing about adrenal fatigue yet he seems like he will help me figure out this road I'm on thankfully, if that's even possible. The other doctors I've consulted with want $ 2-5,000 to treat me, which is money I do not have.

I'm sad. Right when things were finally starting to come together for me my body decides it's going to give out. I don't even know where to turn anymore.

Does this sound like AF to the rest of you all? If you've gotten this far thank you so much for reading my ramblings. I'm lost. Any suggestions are very much appreciated.

PS. I discovered through a hair test analysis that I have mercury poisoning. I don't even want to deal with that at the moment. I just want to be able to function normally, if that can be possible. :)
 

aaron_c

Senior Member
Messages
691
Hi @Maddie28

I'm sorry to hear you are doing so poorly right now.

I hope you can find a good medical practitioner, because your situation is pretty complex. Having said that, I can perhaps add a few thoughts:

1.) You may want to look into mercury poisoning. With the exception of constipation, I think Mercury might be able to cause all of the symptoms you list.
2.) Another disease with a wide variety of symptoms that could approximate your situation is lupus. Perhaps if something recently tanked your cortisol, that might exacerbate the symptoms of lupus?
3.) Looking at the symptoms of Addison's Disease I see that a decent number of symptoms are actually the opposite of what you have: low blood pressure, weight loss, and diarrhea. I'm not sure this rules out low cortisol as a causative factor...but it does give me pause.

I'm sure this isn't an exhaustive list of what could be wrong...but it is about the limits of my knowledge. I hope you find someone who can help you soon!
 
Messages
6
Location
Chicago Burbs
Hi @Maddie28

I'm sorry to hear you are doing so poorly right now.

I hope you can find a good medical practitioner, because your situation is pretty complex. Having said that, I can perhaps add a few thoughts:

1.) You may want to look into mercury poisoning. With the exception of constipation, I think Mercury might be able to cause all of the symptoms you list.
2.) Another disease with a wide variety of symptoms that could approximate your situation is lupus. Perhaps if something recently tanked your cortisol, that might exacerbate the symptoms of lupus?
3.) Looking at the symptoms of Addison's Disease I see that a decent number of symptoms are actually the opposite of what you have: low blood pressure, weight loss, and diarrhea. I'm not sure this rules out low cortisol as a causative factor...but it does give me pause.

I'm sure this isn't an exhaustive list of what could be wrong...but it is about the limits of my knowledge. I hope you find someone who can help you soon!

Thank you for being so compassionate....it's very refreshing.

You have some great suggestions...the Lyme thing I've often thought about too but what was never tested. Also, I was wondering about Cushings, instead of Addisons. Hmmm... time to learn the difference between the two so I can figure this out little better.

Thank you again so much... I always investigate what others share with me if even just to help gain more knowledge.

This is a very frustrating issue isn't it? I hope you are well. :)