Alone & Afraid, Please Help

Allergies, blood and immune system
1

I'm 39, married & have 2 boys(3&9). I was in Remission 1 mo ago. Tackling home repairs, lawn work, & even planted my 1st Organic Garden.

3 days later- acute extreme fatigue, SOB, chest pain, dizziness/faint, heart Palpations, cold sweats, flushing, dry cough, nausea & bile vomiting. Bedrest for next 2-3 weeks. Then unusual sporadic Confusion began.

Rheumatologist sent me to ER, ER admitted me for Sinus Bradycardia (low 40's) & Left Ventricular Hypertrophy. Before my heart monitors alarmed, I'd feel mild electrical shocks doen my left torso, starting from the heart. It even made my hands twitch. Doctors are still perplexed. Luckily my heart stablized in the hospital with only tx of fluids/rest/darkness.

Finally released from hospital & back home on bedrest. However, I vomited at GP, she was scared & has labeled it "Coffee Ground Emesis", so U/L GI Scopes sch. on the 20th. Small bowel antibiotic called Xifaxan given.

Scariest part.........I've had confusion, vivid dreams with short term mermory loss (comes/goes). Wake up not knowing where I am or thinking someone is in the room, unable to remember if I took my medication, even forgetting phone converstations. Doc suspects it's from insomnia, waking up every hour in pain for the past month.

Since released from Hospital, I've also developed a nasty burning

-Thrush- mouth & throat (taking Rx rinse & pill), --Burning acidic sinus pain (neti pot won't flow through the sinus canal)

- sore throat, difficulty swallowing

-deep bone pain/joint pain

-Muscle pain/stiffness with movement

-Crushing headaches (Cough/Sneeze feels like a hammer slams into my head.

-Rash on arms/torso.

-no appetite, fell full

-weight loss of 2 -3 lbs a day.

Totally feeling alone & scared, especially when doctors are more excited to hear about the Speciality Clinic "Mayo", my conditions, tests & unusal meds, then finding a way to cure me.

Not sure what to do about my current painful condition. Has anyone else experienced these aliments or anything similar. Please, desparate for advice. Thank you!

2

Aphra, I'm so sorry to hear your recent struggles. Unfortunately, I don't have a lot of answers. But I have recently shared some of your symptoms.

I turned a corner 2 weeks ago. I can now get around a bit, eat a little, and even drive and do some errands.

I stopped sleeping March 2016 and my suffering had been increasing the past 18+ months.

Early this year, I really felt like I was dying. The physicians ruled out life threatening possibilities. I wasn't much help as my mental capacity had dropped to about 5%.

After I was cleared of immediate danger, I felt so helpless, but something had to change. I decided to make a small goal that could be reached. I was too weak to manage more. I chose to focus on nausea and sleep improvements.

My GP approached the nausea aggressively. It's not cured. But I can stand up straight. 2-3 weeks ago I couldn't stand at all.

For sleep, I'm using Lidocaine pain patches in the areas that disrupt sleep the most. I'm taking new muscle relaxers (Zanaflex), plus Tramadol. I take another dose of both 4 hours later if awake in pain. I move to large firm pillows, or a hard surface to find comfort, I fall asleep to soft music, stretch when I wake in pain, etc. Although I can't sleep as long or as deep as I'd like, I'm now sleeping every night.

I also have children. I can't let them lose their mother so young, if there's any way I can prevent it. That's what kept motivating me to take care of myself and to keep looking for new methods to help.

What helped me is that I kept trying, even when I felt too weak and tired. Please hang in there, Try setting simple goals. Use this forum to ask others what helps them. Hang in there!

3

Thank you for sharing your story, tips, and support! I have nausea meds, Zanaflex & Lidocaine patches. I try to avoid taking "as needed" meds, because I'd be taking them all day, every day. I already take 16 pills, 6 Ampuls, 3 shots for my regular rx meds. But I need to change something, so here we go.

I'm going to try theZanaflex & Lidocaine before bed. Not sure why I thought it was a day time patch?? Unfortunately, Tramdol makes me sick, along with all other pill form pain meds.

My bed has an 6"Soft PillowTop & all Pillows are super soft. I never thought of changing to a firm pillow or mattress, great suggestions. I'm sending the hubby out for a nice firm pillow. Thank you so much!!

4

HI look into lymes disease as a cause for your symptoms they are very similar to mine. the lymes disease forum is excelent to get advice