• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. L

    Update

    Hey, guys! I've not been on here in ages, at least a year. I wanted to give y'all an update. I got lucky. I got so incredibly, inexplicably lucky. I've recovered about 50-75%. I don't know what happened or how or why, but all of a sudden things just started getting better. I'm not where I was...
  2. L

    Tube Feeding?

    Where on earth do you get raw camel milk?
  3. L

    Tube Feeding?

    I'm on the waiting list, hoping there'll be a cancellation somewhere
  4. L

    Tube Feeding?

    I see GI on April 24th, which leaves almost a month of wondering how this is gonna go and what I'm gonna do. As for now, I've already lost weight just within the past week.
  5. L

    Tube Feeding?

    So I met a very inspirational cancer survivor over the weekend, and she, being in the medical field, got to talking with me about this very topic and she brought up a VERY good point that I'd never thought about before!! So I choke on everything. All the time. 9 out of every 10 meals I'm gonna...
  6. L

    Tube Feeding?

    I have tried Iberogast....and threw it up every time. As for CVID, I *highly* doubt it; I haven't caught a cold in years. Just bad timing :/
  7. L

    Tube Feeding?

    Update: I caught what seems to be a regular ol' cold on top of my seasonal allergies, and it feels like my GI system has just skidded to a screeching halt. I can't get even my favorite, go-to foods down, and I'm probably dehydrated because I can't get much fluids to stay down, either. I'm a...
  8. L

    Tube Feeding?

    I should mention I have a history of gastric and peptic ulcers, including one right at the emptying port of my stomach (the duodenum, I think it's called?). I had the gastric emptying thing done (the one with the eggs, as kangaSue said), but I don't believe I've ever been tested for liquids...
  9. L

    Tube Feeding?

    Ok I have an analogy: think of a water heater. A water heater isn't necessarily essential for life, but it does make your life a whole lot more comfortable, right? And, I mean, it's expensive and requires maintenance but many would agree that it's worth it, right? Well, for me, tube feeding...
  10. L

    Tube Feeding?

    Hey, guys, so I have a question with a bit of backstory: I've had IBS since long before my ME started, but it obviously got much, MUCH worse when the ME started up. I've had my motility tested and it supposedly was normal but I have a lot of signs of very slow motility... It's not this bad all...
  11. L

    Prozac / Fluoxetine

    As for side effects of Neurontin/Gabapentin, I, too, take a pretty low dose of 100mgs either 2 or 3 times a day (I often forget the third pill :/). The first time I took it I noticed a distinct...feeling? I felt stoned, I'm not gonna sugarcoat it. I've tried marijuana once and it felt exactly...
  12. L

    Prozac / Fluoxetine

    I agree with SilverbladeTE on the gabapentin; that stuff helped me tons! Personally, I'm on Prozac AND Abilify and I do fine, but everyone's different :shrug:
  13. L

    Blood Glucose levels are weird

    Hey, guys! So I've had what was presumed to be hypoglycemia for years. In fact, I mistook the onset of my ME for a hypoglycemic episode. After all this time, I finally went to an endocrinologist and was prescribed a BG monitor to see if my BG was actually low when I was experiencing these...
  14. L

    Prozac / Fluoxetine

    I've been on Prozac for....3 years? Maybe 4? And my CFS started almost 1.5-2 years ago. I've noticed no interaction between Prozac and CFS. For me, it's been fine. They don't interact or affect each other at all. In fact, we believed that Prozac was the cause of my CFS and that was thoroughly...
  15. L

    Abusive Environments and ME

    Update: it's been a little over 3 weeks now and I'm completely adjusted and settled in. Some very strange things have happened since I moved out: my previously intense (and I mean *intense*) fast food cravings have completely vanished....just gone.... IBS is still there but much better without...
  16. L

    Abusive Environments and ME

    Welp, I tried changing my environment, and it did not work. Background: my mother has been verbally, emotionally, mentally, and at times physically abusive for as long as I can remember. She has severe type 1 Bipolar Disorder, and all my childhood I thought that this was why she was so goddamn...
  17. L

    Update: PM&R, etc.

    I thought of them as pseudo-seizures, probably, especially since they often came from an emotional trigger. Really it's anything seriously stressing/jarring and my body just freaks out and shuts down. Very strange. However, if what your son is experiencing is the same as what I'm experiencing...
  18. L

    Update: PM&R, etc.

    Well, to specify about mine: they have a trigger, usually. Sometimes it's an emotional trigger, like a fight with someone I really care about, or sometimes it's a physical trigger, like pushing myself too far and ignoring my cues to stop. What happens is kinda like this: it feels like time...
  19. L

    Update: PM&R, etc.

    Hey, guys! There's been a bunch of crap happening lately so I figured I owed an update. I saw PM&R yesterday and got some interesting news: the ball part of my hip (the part that goes in the socket) is oval instead of round, which might be causing a lot of my hip pain and problems. Also the...
  20. L

    New Analogy? Might Help Someone

    Precisely! So when someone asks me how I'm feeling, I could say "it's a big bubble day" or "my bubble is weak af today" and the size of your bubble can give others a clue of how you're feeling and how much you can do.
  21. L

    New Analogy? Might Help Someone

    Hey, guys! So I was trying to explain pacing to my father and I came up with a new possible analogy that might help someone else explain ME so I figured I'd put it out there. So basically think of blowing a bubble. If you blow gently, you'll get a nice bubble. Blow too hard, though, and you'll...
  22. L

    Blood Work is Normal???

    Well, infectious disease didn't say anything about the parvovirus titer other than that the change is "clinically insignificant." I'm going to my GP today to get a referral to PM&R. He did say, however, that 95% of people with ME make a full recovery in a few years...for some reason i just don't...
  23. L

    Blood Work is Normal???

    I think my parents are almost beyond help...they haven't even read anything about ME despite me asking them to and don't plan to. It's been 2 years and they still don't fully understand what ME even is...I just convinced my mother to read something if I print it out and give it to her and she...
  24. L

    Blood Work is Normal???

    Yeah, the school is actually more supportive than my parents! The school is willing to do whatever will help, but my parents are applying the brakes. Soon I'll be out, though, and able to take care of myself properly. HOWEVER...NEWS!!!!!! I DON'T KNOW IF IT'S GOOD OR BAD BUT IT'S NEWS AND I'M...
  25. L

    Blood Work is Normal???

    @TrixieStix I absolutely agree, and had similar experiences with the "push through" mindset and had to learn to pace myself. The problem, however, is that it's come to the point where everything almost is beyond my energy threshold....my energy threshold has gotten so low that if I'm not on...
  26. L

    Blood Work is Normal???

    I live in Louisiana and am having trouble finding a specialist or specialty clinic for ME; is there a database or list somewhere of them? The closest thing we have in LA is a Rheumatologist specializing in Fibromyalgia.
  27. L

    Blood Work is Normal???

    @Jessie 107 S A M E. I know EXACTLY how you feel, as that's how it is with me! Only I'm so damn tired it feels good to rest, which is good for me that I don't hate resting. I'll be seeing a PM&R (Physical medicine and rehabilitation) specialist soon as well as a Rheumatologist, and right now...
  28. L

    Blood Work is Normal???

    Hey, guys! So I was diagnosed with CFS about 4 months ago after 2 years of having just about every symptom...ME is a perfect match for everything that's going on, with one problem....all of my bloodwork just came back normal!! Wtf? I'm so confused and afraid I'm going to lose my credibility with...