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    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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. minimus

    posible loss of group life insurance coverage

    As you probably know, it’s nearly impossible to obtain life insurance once you are disabled because of medical underwriting. So I would probably pay out of pocket to maintain the existing coverage through your employer’s group plan while you work to restore the premium waiver, get the original...
  2. minimus

    Anything I should know about before trying Flexeril longterm?

    I didn’t know that Baclofen can cause SFN to worsen or flare. Is that a common side effect? In any case, I have been on Baclofen, Methocarbamol and Flexeril at various times. Flexeril is the most effective for muscle stiffness and pain in my experience, whereas baclofen doesn’t seem to do much...
  3. minimus

    Vagus nerve stimulation - Nurosym device

    After reading a post on the healthrising forum by someone with ME who said the Parasym device helped her, about four years ago I bought a previous version of their vagus nerve stimulator, which was a bit clunky and less sleek than the current version. FYI, last time I checked Parasym does not...
  4. minimus

    Antidepressants (most effective?)

    @David Ducati - Sorry to hear you are going through a relapse. If you or others suspect you have MS, you probably should see a neurologist and have them order an MRI to rule in/out MS. It is possible that your chronic insomnia is causing cumulative sleep deprivation that is exacerbating your...
  5. minimus

    Extremely Severe and debilitating Muscle tightness

    I have on/off muscle stiffness that has gotten worse as my ME got worse, though I experience it from my mid-back through my legs. I also have pretty severe leg/back muscle heaviness, weakness, post-exertional muscle soreness and often severe lumbar spine pain, I’ve been to three neurologists...
  6. minimus

    Muscular Dystrophy-like Symptoms

    Sorry you are experiencing these symptoms. I have severe muscle weakness myself from my mid-back through my legs (rapid fatigability, leaden feeling, post-exertional and random muscle pain) that has severely limited my ability to walk, bend, stand, etc. in the last four years, but I have not...
  7. minimus

    Any Dr. Systrom patients here? - Mestinon (Pyridostigmine bromide) and safety profile

    Systrom prefers mestinon to midodrine and florinef because the latter two drugs increase blood pressure. He will prescribe midodrine and florinef if mestinon doesn't work, but he is cautious about using them for that reason. Midodrine and florinef are fine if you are hypotensive, but if you...
  8. minimus

    William Davis - Supergut Protocol for SIBO and SIFO

    Well, it’s good to have a diagnosis, though c. diff infections are serious and can be hard to get rid of. I became familiar with c. diff because my otherwise healthy adult daughter developed a c. diff infection early last year after a dentist who removed her wisdom teeth prescribed antibiotics...
  9. minimus

    Gudrun Lange opinions

    @sloopercat You may have already seen it, but one resource that my wife found to be helpful in the LTD insurance application process was the blog, "How To Get On" (LINK). All the recommendations should apply to the appeals process as well. As far as applying for SSDI, it's important to submit...
  10. minimus

    Gudrun Lange opinions

    @sloopercat - I'm not sure if you are helping your daughter, your mother, another relative, or a friend, but if she worked as a teacher for 27 years until she couldn't anymore due to worsening ME/CFS, she certainly deserves to have her long-term disability application approved. I'm sorry she...
  11. minimus

    Gudrun Lange opinions

    If the results of a 2-day CPET and a neuropsych test were abnormal enough, you have a decent shot of getting on private disability. There are a handful of lawyers who specialize in ME/CFS disability cases -- Andrew Kantor, among others -- who will offer a free consult to answer questions and...
  12. minimus

    Has anyone tried an Avocado mattress?

    Hi @lenora, We got a split king adjustable bed - which is essentially two twin mattresses side by side - so that I can sleep on an incline and my wife can sleep flat. My wife went to an Avocado showroom and hedged her bets by buying a twin Avocado Green mattress with no pillowtop for her side...
  13. minimus

    Has anyone tried an Avocado mattress?

    Hi @lenora, We got an adjustable bed only recently. Prior to that, I slept in a recliner for quite some time because my reflux was so severe, I couldn’t lie flat at night. I’m getting used to sleeping on a mattress again after years in a recliner. I’m not sure Avocado sells mattresses on...
  14. minimus

    Has anyone tried an Avocado mattress?

    I‘m housebound, so my wife had to do our new mattress shopping for us. First, we ordered an adjustable bed because I need to sleep on an incline and my wife does not. We first bought mattresses from Plushbeds, which are organic and seem to get excellent online reviews. Their mattresses are way...
  15. minimus

    IVIG UK

    I have a chronically low white blood cell count too. As is the case in the UK, you won’t be diagnosed as immune deficient and in need of replacement antibodies through IVIG based on a low WBC count alone. Usually, your blood work has to show abnormally low levels of immunoglobulin production...
  16. minimus

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    Jeff Wood is now working as a new patient coordinator/analyst for Dr. Bolognese. I think he also still does some consulting on the side. If you contact Jeff through the email address shown on Dr. Bolognese’s website, he will coordinate the process of getting evaluated by Bolognese by sending you...
  17. minimus

    ME/CFS,FM: Use of Anti-Platelets, Fibrinolytics, Anticoagulents, Vasodilators and Other Medicines/Supplements with Favorable Effects on Blood Vessels.

    David Systrom also recently published a research paper evaluating iCPET results of a small group of long Covid patients vs controls. At rest, long Covid patients had higher mean venous oxygen saturation (73%) than controls (66%), p value = 0.01. During peak exercise during iCPET, long Covid...
  18. minimus

    Exercise Intolerance: Insights from Invasive Cardiopulmonary Exercise Testing of Patients with ME/CFS (Joseph et al., 2021)

    @Oliver3 The drug is diamox. Paul Cheney would occasionally prescribe it to some of his ME patients, finding that it symptomatically seemed to relieve chronic pressure headaches in some cases. Interestingly, as part of his annual clinical exam, Cheney would have his ME patients fully exhale and...
  19. minimus

    SFN without pain?

    There seem to be two schools of thought about small fiber neuropathy among neurologists -- the mainstream view is that the hallmark symptom is pain, sometimes severe, tingling, and/or loss of sensation in the skin, often starting in the feet and hands. The second, newer school, led by Anne...
  20. minimus

    Vitamin E has lessened my small fiber neuropathy symptoms

    @junkcrap50 My beta and gamma tocopherol level was 0.3, below the reference range of 0.5-5.5 mg/L. My alpha tocopherol level was 9, inside but at the low end of the reference range of 7-25.1 mg/L. @brenda I have been taking one gel cap a day of A.C. Grace “Unique E“, which contains 400 IU of...
  21. minimus

    Vitamin E has lessened my small fiber neuropathy symptoms

    I was diagnosed with small fiber neuropathy by skin biopsy in 2018 around the time my ME/CFS went from mild/moderate to severe/housebound. Among many other symptoms in the last three years, I often experience mild aching/stabbing pains in my legs, especially in the hour or two after eating...
  22. minimus

    30min lecture of Michael VanElzakker, PhD, Harvard Medical School

    VanElzakker is brilliant, iconoclastic, and sympathetic. He said he became interested in ME/CFS because one of his friends disappeared and he later found out it was because she had developed severe ME/CFS. If he were really career oriented and only interested in academic tenure and obtaining...
  23. minimus

    New Diagnosis and New Docs: Autoimmune Encephalitis, SFN and a Neuroimmunologist

    I had a skin punch biopsy that was sent to Anne Oaklander’s lab at Mass General. See report below. Maybe you can compare it to the report from your dermatologist? Edit: Having read a bit more online, I now see that the epidermal nerve fiber density - ENFD - reported by Oaklander‘s lab measures...
  24. minimus

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    @lenora -- Thanks a lot for the suggestion. I will get in touch with them and see if they can help or at least offer me suggestions.
  25. minimus

    Anyone tried Cialis or Viagra for neuropathy?

    Your post jogged my memory that ME/CFS specialist Jay Goldstein mentioned Viagra years ago. Though Viagra was not among the drugs he found to be most helpful in treating ME/CFS patients, he said it occasionally worked. He stopped practicing a long time ago, so he would not have had access to...
  26. minimus

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    Any ideas on where to go for imaging in the New York area? New York is a supposed hot bed of top-notch medical care, but it has been very difficult to get decent imaging. I am severe/housebound and have a lot of difficulty walking. None of the hospital-affiliated radiology practices have...
  27. minimus

    LTD Policy

    @Breagjam - Every disability lawyer I spoke to recommended undergoing the 2-day CPET except Andrew Kantor. I didn’t and couldn’t do it, as I had become too severe. But as my health was heading downhill from mild/moderate to severe/housebound ME, I did get an iCPET done by David Systrom. This...
  28. minimus

    LTD Policy

    I interpret the language the same way you do, @nryanh94. That language probably exists so the insurer does not have to pay claims to new employees. As far as applying for disability, I recommend contacting disability lawyers familiar with ME/CFS, as some will give you a free phone consultation...
  29. minimus

    How many of you with neuropathy have celiac disease?

    I have SFN but all my blood tests for celiac were negative, as was a biopsy from an endoscopy years ago. But I can’t tolerate gluten as it results in severe cognitive problems.