Connect with others who understand.

  •   Learn from expert-reviewed resources
  •   Real advice from people who’ve been there
  •   People who understand what you’re going through
Sign Up Log In
All Resources Treatments A-Z Personal Assistant Help Center Crisis
Powered By
Real members of myPHteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

I have PH and CHF as well as a disorder similar to narcolepsy but not nearly as bad. Do you have 2 or 3 of these?

A myPHteam Member asked a question 💭
Sierra Madre, CA

I work for less than 4 hours and come home wanting a long nap. I don't know which disorder is causing this. I don't know how many stimulants my heart can take, but if I don't take them I'll sleep my life away.

April 9, 2023
 · 
Reactions

Answer Summary

Members connected over the exhausting reality of managing pulmonary hypertension alongside multiple conditions like heart failure, autoimmune... Read more

Members connected over the exhausting reality of managing pulmonary hypertension alongside multiple conditions like heart failure, autoimmune diseases, sleep disorders, and chronic pain, with many describing a relentless cycle of extreme fatigue that no amount of stimulants or coffee seems to fix. Several members shared their complex medication regimens, including Lyrica, Cymbalta, gabapentin, Tadalafil, and various pain relievers, as well as practical strategies like breathing rehab, portable oxygen units, scheduling important activities for morning hours, and giving themselves permission to nap without guilt. A recurring theme was the importance of listening to your body, advocating for disability benefits when work becomes unsustainable, and finding solidarity in a community that truly understands what it means to live with invisible, overlapping illnesses.

A myPHteam Member

I have PAH, asthma, allergies, sleep apnea, thyroid….. I don’t really have as many as some …. But we all have the same road to walk but on different paths to the end! 🙏🏼

May 21, 2023 (edited)
A myPHteam Member

I finally had to quit my part time job as a caregiver. I had stopped doing the more strenuous things that she needed done for her. I found that even having to show up on her schedule, in spite of how I felt, I was exhausted at the end of my shift. It was taking a toll on me physically. She was very demanding and was on a lot of medications that made her not remember a lot of things. It is such a relief to be able to be in charge of my own time. I find that I am sleeping a lot. There are mornings when I get up and take all my medications, including my alertness medications and some strong coffee. Then, when I expect to stay awake, I fall asleep. Mornings are like that. I need to talk to my doctors about it and get on disability.

May 5, 2023
A myPHteam Member

Thinking of you, BugBarb. Hope things get better.

May 8, 2023
A myPHteam Member

Thank you for your hugs. It is so nice not to have to be anywhere except where I want to be. Yesterday, I had a new symptom. I'm having tongue cramps. That's right. The right underside of my tongue will slowly and painfully cramp up, then just as slowly and painfully relax. It has something to do with the healing of my botched tongue surgery. I don't really ever want to see that doctor again. The more time that passes since the surgery, the more anger I develop towards the doctor and his team. Whoever stitched up after the surgery really botched things up. I will open the portal and let them know about my cramps.

May 7, 2023
A myPHteam Member

Hi Barb
I have PAH, Sjogrens, Sarcoidosis with interstitial lung disease and diastolic heart failure. I have nerve pain up the wazoo as well as muscle and joint pain. I take Lyrica, Celebrex, Prednisone, Norco as well as Azathioprine, Hydroxychloroquine and two fluid reduction meds. I feel like all I do is chuck the meds down. But I have had this mess for 9 years with a PAP of 64 and I’m still staying active. It isn’t pretty some days but I hope I get to live a bit longer. I love life. And naps

May 5, 2023

Related Questions

View All

May I ask what medication’s some are taking for this

A myPHteam Member asked a question 💭
Lancaster, CA
July 14, 2022 (edited)

Try as you might to slow me down
Do Your Lungs Hurt When You Wake Up? Is That a PH Symptom?
5 Ways To Advocate for Yourself if You Have PAH