• 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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    Need Doctor Help...Extreme Nausea and Dizzy

    Guys, I'm typing this dizzy and unbalanced on bed. I have inner and outer tremors. I have this 24/7. Had IVIG from dr. Novak led to asceptic menigitis in December. From that back of head and ear inflammed deep in. Then balance and other issues. I'm disabled and puking in bed. ED is no help...
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    Progressive Symptoms Very Concerned

    I've done PAVAL which came back negative. Also a lot of other auto antibodies came back negative as well which perplexes my neurologist. We decided for IVIG because it was reasonable to assume that this is autoimmune-related based on the presentations after my cold. Other avenues is if this is...
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    Progressive Symptoms Very Concerned

    Let me clarify. I don't think I have CFS and I haven't been diagnosed for it. Instead, my diagnosis so far has been Small Fiber Neuropathy and sudomotor dysfunction "believed" to manifest as Pure Autonomic Failure. I have done a table tilt (which didn't show abnormalities) but other tests and...
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    Progressive Symptoms Very Concerned

    I need help at this point. My symptoms have been stacking since I've joined this site in July-August. I had a severe cold in July and after it went away, my symptoms have stacked to unbearable levels. I've been formally diagnosed with small fiber neuropathy and sudomotor dysfunction. Believed...
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    Heat intolerance - common in ME/cfs

    If anybody here has problems with temperature deregulation definitely consider a skin biopsy for Small fiber neuropathy. Get a doctor to test this. I have cold intolerance and burning skin pain in temperature changes. One drink of cold water and my body convulses. Wear a T shirt and my skin...
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    Tricyclic Antidepressants Work for Me

    @taniaaust1 incidentally I was in the ED a month back and a lady there complained about Amitripyline causing her to not be able to defecate. I have the opposite problem. I had increased urgency without cramps. Feels like stool passes to fast through my body and would come out loose. The more I...
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    Keep Waking Up and Fragmented Sleep

    @AnnaDove I mean it does make sense that klonopin started this since I didn't have any issues prior. Just been awhile since I've been on that poison. @Wishful if it came on suddenly then it may very well be part if the symptoms. I'd imagine getting you'll see it gradually. In my case it was...
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    Keep Waking Up and Fragmented Sleep

    @Learner1 I'd like to get the cortisol level checked but not sure whom to ask for it. If Sephiros works then I'm willing to try. My circadian rhythm just seems off. Been having issues with doctors willing to help me run tests that are non-standard and lots of resistance on commercial tests. I...
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    Keep Waking Up and Fragmented Sleep

    @jessie's mom I've made a habit of sleeping with the lights on and tv on for years. Going to try sleeping with the lights off. Although my body deregulation problem kicks in and I've been using a heater (I'm cold intolerant) as white noise lately. No luck on Trazadone as it makes my nose...
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    Keep Waking Up and Fragmented Sleep

    Been having severe sleep issues for over 2 months. I have this problem where I would wake up every 4 hours no matter what time I slept. If I proceeded to fall asleep my sleep would continue to be fragmented where I'd wake up every hour. Doctor thinks it may have been me taking myself off of...
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    Cold hands and Red Feet

    My feet seem to be getting progressively colder and have recently been turning red. Read Raynaud's online but not trying to scare myself. Also not sure how this is even related to Dysautonomia which is what some of my doctors suspect. Other new symptoms: Some muscle weakness in thighs like I...
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    MGH or Brigham & Women's Experience?

    @Learner1 I appreciate the links. Is the cell trend only ruling out POTS or other types of autonomic dysfunctions. At this point it's hard to say what I have. I have irregular racing heart/higher blood pressure which is like the opposite of classic POTS. Though I do get lightheaded when I change...
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    MGH or Brigham & Women's Experience?

    Having been through a really bad experience at Tufts, I'm officially going to switch my provider care over to MGH or Brigham's in Boston. I suspect that I have autonomic dysfunction and autoimmune issues (both seem to be related). I have higher ANA (an autoimmune test that showed 1:160) which...
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    Need Help...More Symptoms Heart and Breathing

    Back in Tuft's ED again at the moment. Woke up with more shortness of breath and heart PVC. Lightheadedness. Colonoscopy they said it was a poor prep, but from what they did see it seemed normal. Did a ton of biopsies to rule out things. They did run a abg/chem panel. Came back with bad...
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    Need Help...More Symptoms Heart and Breathing

    Went to the ED yesterday for blood in stool (red towards end like it's soaked). Doctor couldn't determine where it came from but greenlighted my colonoscopy for today, which I'm on my way to now. Was given more metoprolol 25mg and ativan (which I hope I dont get addicted to at this point). They...
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    Need Help...More Symptoms Heart and Breathing

    I seem to be having more symptoms show up and it's hurting my quality of life. My doctors at Tufts have been completely useless in regards to diagnosis, and specialists have been bouncing me around with no answers. I'm scheduled for a colonoscopy from my GI doctor at tufts and an echo from my...
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    Best ME/CFS or Neuro in Boston?

    Nettle and GG, Thanks for the list. I've reached out to B&W but their waitlist is June.. I can check the resources as well. If anybody has personal recommendations as well please feel free to let me know.
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    Best ME/CFS or Neuro in Boston?

    Can anybody recommend me a good neurologist or ME/CFS doctors in my area? I have body temperature regulation problems and hearing loss (amongst other symptoms) that have impacted me. I believe my immune system (cytokine?) overdid it and I may did something to my hypo part of my brain or CNS...