Lost: Being sick and not knowing why wears on you

Posted by toomanyoars @toomanyoars, Feb 16, 2021

Needing to vent. I am feeling like a human dartboard. I’ve been fighting something for years and my physicians have been little help. It’s like a specific set of symptoms present, they throw a dart and suggest a random diagnosis. I recognize they can’t know everything and there have been limitations to my ability to find answers…location, finances, insurance. So don’t get me wrong this isn’t a “I hate doctors” vent. To the contrary I have the utmost respect for really great doctors. I am just frustrated. This morning maybe, after another week of waiting I will hear back from my doctor on my blood work. He suspects a tumor. Obviously I don’t want a tumor. However I am not freaking out because I have ‘been there done that’ with false diagnoses so many times…lupus, chronic fatigue, cancer, fibromyalgia, MS hypothyroid, parkinson’s… You can only handle so much and I don’t know which is worse, to hear they don’t know what’s wrong or to throw a diagnosis at you, without any real testing and you think your life just came to a halt. Being sick and not knowing why for a really long time wears on you not just physically but mentally. It’s exhausting and day’s like today I just want to quit trying to find answers and just deal with the sick and deal with the pain.

Interested in more discussions like this? Go to the Just Want to Talk group.

@fortshaw

Sick & in pain for a year. Many tests. No answers

I am a 66 year old woman who has always been healthy until last March, 2020. I got a virus (covid negative). It took a while, but after a couple of months, I was back to 80-90% of normal. Suddenly, my b/p spiked 220/110, I was dizzy, my neck hurt, my blood sugar spiked. My thyroid went from hypo to hyper and back to hypo. It normalized with medication. My neck continued to hurt. I felt like I had a lump in my throat and my head had ocean sounds. I was on a high dose of 2 different b/p meds which leveled out the b/p, but I still had high spikes. I had several tests to find the underlying cause of the high b/p, but nothing was found. About 2 months ago, I started getting weakness in my legs. I felt like they were rubber. And then I couldn't stand up from a sitting position with pushing myself up. My hands started to tremble. Tests include: MRI of brain, lung x-ray, CT scan of thyroid and throat, neurologist did blood work testing for muscle disease, EGD. So much has happened in the past year, I'm not sure I've covered it all. Have I mentioned brain fog? And uncontrollable yawning 2-3 times a day? I've had 4 covid tests and antibody test. All negative. What is wrong with me!?

Jump to this post

I pray for your healing. I pray that God's peace would fill you and flow out of you today. May God give you wisdom and grace to bring His peace to your difficult situations. I can relate to your post. I too am feeling sickly and going to numerous doctors to try and find out what is going on with me. The worse is nausea.

REPLY
@toomanyoars

Hi. The closest decent medical center to me is a couple hours away. Insurance now a nightmare for me. I used to teach. Good insurance, loved my job more than anything but physically but was getting more difficult with the fatigue and pain primarily. Eventually I had to quit working. We live in a state where the medicaid/Obamacare has massive loopholes. We don't qualify for medicaid yet don't make enough for the marketplace so for me to have any kind of insurance I have to purchase 6 month policies, usually aweful insurance that covers very little and pray they will let me renew after the first 6 months. Last year they didn't. One of those use it and loose it situations. I honestly hoped that I could take a year off, get healthier and go back. That was three years ago.
As far as the tumor my physician is basing it as of right now until more blood work comes in on symptoms. Random BP spikes, flushing, sweating, headaches, abdominal pain and others.

Jump to this post

@toomanyoars I have a similar story. 10 years of mystery. Diagnosed tith Sjogrens. MS..a plethora of automimmune diseases.

Straight to the point. Although I do have some autoimmune diseases, the real culprits were/are my medications! 10 years of this nightmare. I finally figured it put once I had my psychiatrist qean my of the xanax.

Benzodiazepines can mimic chronic illness.

REPLY
@jdj1rn12345

@toomanyoars I have a similar story. 10 years of mystery. Diagnosed tith Sjogrens. MS..a plethora of automimmune diseases.

Straight to the point. Although I do have some autoimmune diseases, the real culprits were/are my medications! 10 years of this nightmare. I finally figured it put once I had my psychiatrist qean my of the xanax.

Benzodiazepines can mimic chronic illness.

Jump to this post

Hi @jdj1rn12345 and welcome to Mayo Clinic Connect. I noticed that you wished to post a URL to an article with your message. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post are not spam, so allow me to post it here.

– How Benzodiazepines Mimic Chronic Illness and What To Do About It https://www.benzoinfo.com/2018/04/28/how-benzodiazepines-mimic-chronic-illness-and-what-to-do-about-it/

Once you tapered off benzodiazepines, may I ask what treatment or lifestyle changes you made to manage the condition for which the benzo was prescribed?

REPLY
@toomanyoars

Update: The blood tests were inconclusive for an adrenal tumor for the most part. Two of the tests he ordered weren't run and one came back with a negative result so he continuing down this course isn't productive. After a long discussion he agreed to send me to a new rheumatologist and endocrinologist. Right now I am fighting my insurance to cover because neither are in my area. They are both at a better hospital a couple hours away. Obviously I am a little frustrated, not that I want a tumor, that would make me insane but I want answers and the availability to get answers. He and I talked about going to Mayo and it not being cost affective right now. It's hard when you are in that rock and hard place when you are ill… no diagnosis but too sick to work and unable to get temporary disability to help pay for the medical treatment to get a diagnosis…living in a state where even though your income is minimal you can't get temporary assistance (Medicaid) to go to the physician and any decent insurance plans are too expensive so you pay less and pray it covers anything at all and accrue more and more medical debt. I had a pretty good life and a great career before all of this. I miss it but I am still getting up every day putting one foot in front of the other. It's just harder some days.

Jump to this post

@toomanyoars I was thinking about you and just wondered if you were ever able to get help from your insurance company? Were you able to see the rheumatologist and endocrinologist? If you care to, please let me know any updates.

REPLY
Please sign in or register to post a reply.
  Request Appointment