Fainted yesterday in public, trouble eating, depression - will it get better?

[Bea50]

I am 66 years old and was diagnosed with ME way back in my 20s. I ended up completely disabled in 2009, and have worsened symptoms in the last few months. I am guessing I'm in a crash, but I have no idea where to look for help. I went through a family situation and, as a result, I had to get rid of most of my belongings this year and moved in with my middle daughter and her fiancé in Tampa. I don't think I am well enough to live alone and I don't drive. The move took a toll as did the realization of my new dependent circumstances. I had a bout with shingles in mid-June right after I moved in.

Does anyone else have worsened depression during a crash? I am really struggling. My appetite is just zero and I have to force myself to eat. Yesterday, I stepped out of my eldest daughter's car at the entrance of a movie theater and began to stagger immediately. I must have passed out for a few seconds because I woke up on the pavement. I think it might have been hypoglycemia, but I'm not sure. I had a dysautonomia-knowledgeable cardiologist near Atlanta, but now that I am in Tampa, he is not covered by my insurance. I have an appointment with a therapist by telehealth tomorrow, but just discovered she is not covered by my Medicare Part C plan, either. I am seeing her anyway because I need help.

I am also experiencing worsened IBS-D symptoms that might be due to Prozac, which I switched to just before moving. The diarrhea is pretty draining. I can't think straight and am just exhausted. Where would you suggest I start to improve my situation? Is there an ME specialist or dysautonomia doctor near Tampa? I was also told by the Atlanta cardiologist that my real diagnosis may be hypermobile Ehler's Danlos. Please help me figure out what to do. Thanks in advance.

 

[Zapped]

@Bea50. ‘So sorry to learn of your dire circumstance. I can empathize as my CFS has waxed and waned with similar symptoms since a vacation to Lake Tahoe area in 1985. I’m 12+ years further along than you and just coming out of a 10 day PEM crash, the worst I’ve ever experienced! ME has definitely been progressive with me . Without my best friend and wife I’d be in a bad way. She deserves knighthood, at least - few and far between like her!

I suggest simply focusing and treating the symptoms so you can function. Going for a complete ’cure’ is relatively unknown and would likely waste a lot of your time and energy on tests, at least at first. Get insomnia under control and get help lowering your up regulated HEPA axis flow of hormones, adrenaline and cortisol. Ask for Sertraline or better for depression. It’s controversial, but I took Klonopin, ethicallyfor 35 years and withdrew abruptly due to a corrupt doctor, which took 2 years to recover from! In hindsight, they were the single biggest aid in supporting all around functioning and I am in the process of reinstating Valium. They are much harder to get now due to drug abusers.

FWIW, I came across a large MECFS group in Tampa online a while back. I’m in Atlanta but they could be very valuable to you in referring local savvy docs and various treatment protocols. Further, there’s a long known ME research and clinic center at Nova Southeastern University. Further south there are several doctors who claim to be MECFS specialists. Again, search with Google. We are all here sending you good energy to assist you in reformulating a positive effort to carry on. Please post followups as you proceed out of the doldrums. No need to stop trying now.✌️

 

[Bea50]

@Zapped I wanted to follow up and let you know I now have an appointment with the center at NSU that you mentioned. I'll let you know what they suggest.

 

[TVB]

A source that may be helpful, as it has been written by the leading authority on this malady (Dr Jakob Teitlebaum) is his work in a book named " From Fatigued To Fantastic"...it is the real deal in information, not salesmanship, witchcraft or speculation. Please secure a copy and read it multiple times, (make notes for your own reference). Wish you the absolute best, ( I have a child with this).

 

[bobnajera]

I really appreciate your suggestion, especially since it hits close to home with your child. "From Fatigued To Fantastic" by Dr. Jakob Teitelbaum sounds like a gem. I'll definitely check it out, make notes, and dive in. By the way, have you ever looked into an ai therapist? It could be an interesting addition to the toolkit.

 

[Centime Tara]

I’m in the same boat. The current crash has greatly worsened my depression, I have zero appetite (I’ve lost 12 lbs and was already borderline too thin), constant nausea, exhaustion, brain fog, severe orthostatic hypotension, worsening arthritis. It seems hopeless. Even so, I had a 7-week remission that ended a month and a half ago. During that time I felt almost normal, not that I can remember what normal feels like! I’m about to read the Teitelbaum book, so will report back when I’ve finished it.

 

[LaurieB-RD]

I am 66 years old and was diagnosed with ME way back in my 20s. I ended up completely disabled in 2009, and have worsened symptoms in the last few months. I am guessing I'm in a crash, but I have no idea where to look for help. I went through a family situation and, as a result, I had to get rid of most of my belongings this year and moved in with my middle daughter and her fiancé in Tampa. I don't think I am well enough to live alone and I don't drive. The move took a toll as did the realization of my new dependent circumstances. I had a bout with shingles in mid-June right after I moved in.

Does anyone else have worsened depression during a crash? I am really struggling. My appetite is just zero and I have to force myself to eat. Yesterday, I stepped out of my eldest daughter's car at the entrance of a movie theater and began to stagger immediately. I must have passed out for a few seconds because I woke up on the pavement. I think it might have been hypoglycemia, but I'm not sure. I had a dysautonomia-knowledgeable cardiologist near Atlanta, but now that I am in Tampa, he is not covered by my insurance. I have an appointment with a therapist by telehealth tomorrow, but just discovered she is not covered by my Medicare Part C plan, either. I am seeing her anyway because I need help.

I am also experiencing worsened IBS-D symptoms that might be due to Prozac, which I switched to just before moving. The diarrhea is pretty draining. I can't think straight and am just exhausted. Where would you suggest I start to improve my situation? Is there an ME specialist or dysautonomia doctor near Tampa? I was also told by the Atlanta cardiologist that my real diagnosis may be hypermobile Ehler's Danlos. Please help me figure out what to do. Thanks in advance.

So sorry all is hard! I'm putting a link below to providers in Florida who specialize in Ehlers-Danlos Syndrome. If you can get to the Mayo EDS clinic in Jacksonville, highly recommend that.

Healthcare Professional Directory Archive - The Ehlers Danlos Society

www.ehlers-danlos.com

Laurie