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

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  1. L

    Extreme Measures: Can one sue their family of origin?

    Even though you have no money to waste, maybe making them a gift of a book about ME would be an idea. Tell them you want them to have it as a thanks for all what they have helped you with. Can others advise, what would be the best book giving most information about ME for families and close...
  2. L

    Detection of XMRV in Blood Cells of Sjgren's Syndrome Patients

    My antibodies show Sjogren's, but currently I almost do not have any dryness symptoms. If my eyes are starting to feel gritty, I noticed this goes away if I sit completely straight with chin a bit down (some kind of meditation pose). I tried to search if in sjogren's syndrome the symptoms are...
  3. L

    Dealing with lost career dreams and goals

    I think it is a very important topic. How to deal with a fact, that you cannot follow the normal course of life? Being denied by doctors and not being usefull to society, is not what we dream about. The days, months and years pass, and it is very difficult to find fulfillment in them. My escape...
  4. L

    TBEV, could it be?

    Thanks for your reply, I agree, statistics reports would be different if it was the case. In Russia there have been reports of a very slow course of the disease, with incubation time of the virus reaching years, but taking the paralytic manifestations and kolezhnikovs epilepsy (interesting...
  5. L

    Myoclonus.

    I know what you are talking about, but I do not know the reasons why I get it or what to do about it. Since half a year ago I was having more and more leg kicks (totally the same as hypnic jerks, but during the day), then the "no" movement of the head, then one day my arm was jumping...
  6. L

    TBEV, could it be?

    Before starting this thread I have searched in forum for "TBEV" with no results. So, I am assuming it has never been discussed. The question I wanted to ask: has TBEV, the tick borne encephalitis virus, ever been considered as a source to the misery called ME/CFS? I suppose it is not...
  7. L

    What's causing post-meal crashing?

    I was told that if the body has very low energy and needs to digest food, other parts are deprived of proper blood supply. Also, intestine is a muscle too, and it needs fair amount of energy to contract and relax in order to push the food. For me, small meals help. Moreover, I had this symptom...
  8. L

    CBT and GET can no longer be recommended for ME/CFS in Norway

    I have always had an impression that Scandinavians are very respectfull towards the patient, regardless of the type of illness - physical or psychological. I spend some time studying there, and realized that society is much better educated about depression and have more effective in care in this...
  9. L

    Psychiatric Times: Are Some Patients Trying to Medicalize Chronic Fatigue? 6/22/11

    We maybe need to look at CBT from another perspective. If you google scholar autoimmune disease and cognitive behaviour therapy, you will see they try it on lupus patients, RA patients etc. And those diseases have markers! Most probably the only situation where they do not try CBT is terminal...
  10. L

    Aging in ME/CFS, do we look older?

    Thanks for replies! We can almost make ME/CFS awareness slogan: "Want to look younger? - All you need is ME/CFS" and we write all the symptoms as side effects in small font :) It could also be promoted as the only psychological disorder which makes people look younger (Simon Wessley should be...
  11. L

    Aging in ME/CFS, do we look older?

    I saw an article "Premature Aging Caused by Some HIV Drugs, Study Shows" where they say the hiv drugs damage mitochondrion. As one of the theories for CFS/ME is mitochondrion dysfunction, I thought it would be interesting to discuss if the symptom of aging is present among CFS/ME patients. I...
  12. L

    Who still gets fever?

    Before getting sick, I was never getting high fever in my life, it was max at 38C. In the first year of sickness I had low grade fever everyday, also I was not sweating in hot weather. Then in the second year I switched to gluten-free low carb diet, it improved, I would have some days without...
  13. L

    Heart beat feeling like it is pounding very hard...feeling and hearing each beat

    I also have sometimes these strong beats upon lying down. In the beggining I thought it was the bed itself moving, then I realised it is consistent with my beat. They improve with omega3(big doses) for me.
  14. L

    Been for gastroscopy for severe abdominal pain. Still starving and hungry

    Did the doc take some specimen for culture exams? Did he investigate your swallowing muscles in action (some neck examination I suppose where an experienced eye can see if the things go up and down correctly). It is definetely strange that you have pain already upon anything entering the mouth...
  15. L

    23andme genetic testing

    Wanted to share an article related to gene testing here. I wonder if any of the described findings can be seen in the results of your 23andme test?
  16. L

    A week into lowcarb diet - headache and more brainfog

    I agree with others it must be keto - I myself reintroduced some carbs after three days due to weakness and brain fog. Ketonic effect is achieved because the body starts to seek energy by burning existing fat - after being sick for so long and with no sports to sweat the toxins, our fat is...
  17. L

    Nightmares. What helps?

    Aside of all these smart insights about emf and mcs, I would like to comment on the dreams themselves from my personal experience. Our dreams are both post-processing of information and preparing for new possible experiences. So I redream some experiences without even knowing they were...
  18. L

    "Childhood Physical Abuse Linked to Chronic Fatigue Syndrome"

    Tania, sorry to hear you have suffered so much. I have experienced a several month lasting stress caused by my family member before getting ill, so I am in favor of the theory that stress can be one of the players to cause a an illness which unfortunately does not resolve even the person is not...
  19. L

    Differential diagnosis: Amyloidosis

    After that we arrange a development of an application which accepts input of blood tests results and symptoms and that would be a case of GPs replaced by computers. I believe computers can be taught not to suspect anxiety at every possible reported symptom, or even add a line when relevant: "it...
  20. L

    Low Progesterone, Wacky Hormones and Out of Control PMS Symptoms

    Sorry to hear you are suffering such terrible periods. I once enjoyed this blog post about the bad behavior of the uterus. I had troubles as teenager (the flow would be as blood corridor scene in the movie "the shining"), but now it is much more reasonable with me. I was reading somewhere that...
  21. L

    catch nothing, catch all...what does our immune system tell us?

    No cold for 1.5 years (out of 2), it is in a way a bit funny - everybody gets the colds in spring and autumn, and I feel safe.
  22. L

    New video: Is acetylcholine toxicity the cause of CFS?

    I will have to do the schirmers and gland biopsy in a few months to follow up possible sjogrens diagnosis. I had high ana and positive anti ssa/ro. Nevertheless, I noticed only dry eyes (and only after I was told that this ssa/ro is pretty specific, it basically means sjogrens) - before, I was...
  23. L

    Does your Brain Fog Relate to, or Coincide with, your Post-Exertional Malaise?

    Hip, I really like your comparison to zombie. I am using the term "I am zombying around" when I tell my bf that I do nothing, understand not much and just let my mind go, often just randomly browsing internet. In fact, somebody could make a movie (fictional documentary) about post apocalyptic...
  24. L

    How long does PEM take to kick in?

    fla, for me sometimes I did not have to do anything hard to provoke DOMS - a simple activity like cutting 50 cm cardboard with scissors would give me doms in the muscle of the thumb (never knew there was some muscle there). Or a walk down the hill of 50 m would leave me crying when taking the...
  25. L

    How long does PEM take to kick in?

    Is it then similar to DOMS (starts 24, peaks 48, resolves in 4-7 days)? Could there be two types of crash - PEM and DOMS (with overlap possible)? Still, it would be interesting to know if it kicks in when enough chemicals are produced in the body in response to activity A? In the DOMS case, it...
  26. L

    New video: Is acetylcholine toxicity the cause of CFS?

    Great video, summarizes so much info in an efficient way. I was reading about AcH too a few weeks ago, and got lost in all the chemistry. I concluded, that it is important to be aware of it and hoped to digest the info over a longer period of time. Also I decided to observe reactions to...
  27. L

    vasoconstriction/vasodilation

    I too dislike to be vasodilated, I feel totally exhausted, the skin feels hot. I also hate hot environments. I consider discussing vasodilation issue important because the endothelial cells release vasodilation chemistry upon movement, which would be then interesting direction to think due to...
  28. L

    Celiac Disease?! Say it ain't so...

    Yeah, if you would consider stats, basically it would be impossible that there is nobody with both CFS and gluten. I personally get fevers from gluten food, but not always, so I generally avoid it. My test (anti transglutaminase) came negative, but then I was pondering, if the test measures...
  29. L

    You look "depressed" - NO i'm fed up!!

    I just love such appointments with the doctors. Las time my GP tried to convince me I have anxiety because I live abroad. Because she 'knows how it feels'. She too has headaches, Raynnauds, has lived abroad, has iron storage problem and candida problem. She doesn't have fever or muscle aches...
  30. L

    Palpitations

    Right thing to do, only the first half of the article is useful. I myself usually skip such things (just like my heart decides to skip some beats) because I face them so too often. In the last month I met 4 doctors, 3 of them mentioned graded exercise and the fourth was talking a lot about my...