Need a Little Guidance (Docs, STD, Work)

[IllMilkman]

Starting about February 18th, I woke up in the morning feeling ill. I was so tired I couldn't move, had incredible headaches, my digestive system was a mess, and my mind was in a fog. My GI Doc gave every blood test imaginable, an MRI on my brain, and am scheduled me for a sleep study. I'm not really sure what's going on with me at the moment, but I know my brain isn't working properly, my head hurts, and I don't have nearly the energy I normally do. She took me off Sulfasalazine this week, which helped the headaches, but that's about it.

Even though I have an office job, I have to be sharp on details, manage the workload of others, and meet crazy deadlines, which makes it a pretty stressful environment. I haven't been able to work since Feb 18th. Dealing with all the hoops I've had to jump through for FMLA and STD (short-term disability) haven't lessened the burden much (especially when the STD folks start calling every day to ask if you're back at work that day). My stress levels are still through the roof.

Adding to that, my GI doc's office is overwhelmed. I got into one appointment with her so far (I switched with my mom, who sees the same doctor, luckily), and they are booked until May. Her medical assistants aren't passing along the information to her when I call the office. All of my tests are coming back normal (which seems to be a common thread as I've read this forum), and I've had two of my doc's medical assistants tell me "we can't justify you being off work anymore, your tests are coming back fine." I know my symptoms, and I know something isn't right. I haven't been out of bed for the last 5.5 weeks except to eat and go to the bathroom.

I guess I'd just like to know that I'm not crazy, lol. I'm so exhausted all the time, have headaches, aches in my neck, shoulders, and hips, sores in my mouth, alternate between constipation & diarrhea, and have pain and cramping that never ends. Anyone have any suggestions as to what I should do next?

 

[nogutsnoglory]

I'm so sorry. I know the feeling and there are no good answers. The only thing I can say is to be persistent because you have to bug them to get what you need. It's awful that during our worst time we need save our most strength to be our own advocates but that's what it comes down to. Don't take not having an appointment for 2 months for an answer. Demand to be squeezed in and demand for help.

 

[IllMilkman]

Thanks NGNG. I've read some of your other posts and found them very helpful.

I was pretty frustrated (and kind of still am) with battling STD, FMLA, my work, and now the Dr.'s office to try to get paperwork filled out correctly, medication adjusted, or just for someone to answer my phone calls!

 

[nogutsnoglory]

Yes, it was very stressful for me when I went on disability. I am very good about getting things done but hate when our lives are in other peoples hands. Wish I had a better answer. Good luck!