• 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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Search results

  1. sleepy237

    Abrupt Continuous Weight Loss

    When I first got sick I weighed around 92kg; was a gradual gain but my steady weight was in better days around 73kg. Around 2011 I started to lose weight and I am still losing weight and its almost spontanous losing i.e scales ( and they are accurate ) read 67 kg five days ago now down to 63.5...
  2. sleepy237

    Angiogram

    Thanks Alex. I wish I thought straight. I was told to phone the cardio secretary today and she asked me if he said CT which he did which means it is a non-invasive procedure. I feel so dumb that I didn't call on Friday and save the distress. Still have the dye to think about but I'm sure...
  3. sleepy237

    strange heart symptoms

    If you are feeling anxious it can not cause cfs symptoms but it can exacerbate them. I have experienced fast heart rate at rest before randomly. It might have been adrenaline related if it got better by moving, also any postural changes can have an impact on heart rate and blood pressure. All...
  4. sleepy237

    Angiogram

    What worries me is I feel in a catch 22. My physiotherapist even suggested that it sounded cardiac - but could be muscular too. I won't have this test unless it's absolutely necessary and from what I can find out an alternative isn't available here. I do worry about complications because of...
  5. sleepy237

    Angiogram

    Thanks for your reply Abha.
  6. sleepy237

    Angiogram

    Well there is hope thanks Sushi the cardio didn't mention catheterisation, I found that myself via google, but I have to double-check. I do have comorbid PTSD and not that CFS isn't enough but invasive procedures have always been a problem for me. I see my doctor who deals with trauma on...
  7. sleepy237

    Angiogram

    Oh yeah I told him about the OI and he said the pooling is microcirculation and its not the same. When I was browsing I did see something called microvascular angina? I wish someone with xray eyes would appear think I'd setttle for a medical intuitive at this point.
  8. sleepy237

    Angiogram

    The cluster of symptoms I have could suggest a blockage Sushi or it could be down to connective tissue but he said they have to know. I'm not keen but the chest pains/tightness are more with exertion than they have ever been so I guess I have to know too. It's the same cardio that referred me...
  9. sleepy237

    Angiogram

    Has anyone moderately affected experienced an angiogram? Cardio is referring me, didn't seem concerned over sensitivity to dye. However after reading about the procedure I'm overwhelmed by all of it. It's nothing till it develops into something.
  10. sleepy237

    Caffeine against POTS?

    Same for me it helps. And it can stop a migraine in the process. Never had caffeine much last couple days. Got migraine today. Got a coffee now = migraine diminishing i guess vasoconstriction.
  11. sleepy237

    CFS vs Idiopathic Chronic Fatigue

    hey Svet. I don't think it is necessary that you will go on to have ME. I think you are doing what you can and it is good you have faith in your doctor. I think anything ending in itis means inflammatory condition, and maybe not eatiing high amounts of pro inflammatory foods could benefit...
  12. sleepy237

    Restless Leg Syndrom / RLS

    Hey D, I have those experiencces in sleep at times too i think personally it is adrenaline release in sleep but i dont know. I agree magnesium helps. Hope it improves for you hugs
  13. sleepy237

    When a chilld has no say...purely appalling

    PLEASE CIRCULATE AND PUT IN WEBS. THANK YOU. Spain, August 12, 2011 A judge orders a 12-year old girl with Chronic Fatigue Syndrome /Myalgic Encephalomyelitis (CFS/ME) and Multiple Chemical Sensitivities (MCS) to be locked up in a psyquiatric ward of a hospital and forbids her mother to see...
  14. sleepy237

    Good Blood Pressure news

    glad to hear it's came down Sally great news
  15. sleepy237

    reactive hypoglycemia -- causes and treatments?

    I was reading uncooked corn starch is quick fix for reactive hypoglycemia. This is one forum i found that discusses treatments there are others: http://ehealthforum.com/health/topic71201.html#b Alex love the avatar :) Take care all ~Sleepy
  16. sleepy237

    90% cured from bed bound with Histrelief / Histame / Daosin

    I know I have histamine intolerance without tests due to reaction s to histamine containing foods especially turning scarlet red & headachey after a few sips of red wine. It's really interesting that you found some recovery. It also appears to be related to POTS and explains a lot of vascular...
  17. sleepy237

    CFS causing trauma/PTSD reactions? Looking for resources

    Hi MrCat, I had a former PTSD diagnosis prior to onset. However it was manageable. I agree with all you say. For me it's pure hell because via CFS & the lack of treatment I feel I have became retraumatised and I could well believe that this terrible illness has the potential to traumatise a...
  18. sleepy237

    Levothyroxine and What it Really Does to the Body

    wow i been 12 years on this thanks for sharing. guess supplements is only way to go for me. Take care Carrigon~Sleepy
  19. sleepy237

    Hypersensitivity and/OR MCS

    Anyone cured/ improved theirs? I am trying everything to help and everything is going against me. I need to be able to tolerate some kind of medicine but I keep having reactions - just when I think I have made a little ground.
  20. sleepy237

    Lamotrigine

    I am discontinuing due to hypersensitivity.
  21. sleepy237

    Lamotrigine

    Thanks Leaves was counting on your reply :) I was presribed it to take at 25mg first but because I am sensitive was my choice to half it. I think because no rash it might be nerve irritation but I will certainly discuss with dr tomorrow. As I said I feel fast benefits and I am reluctant but...
  22. sleepy237

    Lamotrigine

    Thoughts please. I have been taking Lamotrigine 5 days starting 12.5mg last two at 25mg. I have been experiencing intense itching in ALL areas & burning pain in the skin. I have researched thoroughly on THE RASH and it seems pretty rare 8/1000000. But at the same time it mentions burning...
  23. sleepy237

    Comment by 'sleepy237' in 'This disease s*cks'

    Never be sorry to vent. You have a good doctor, hang in there, there is hope. Take care. ~Sleepy
  24. sleepy237

    Nancy Klimas video on a safe exercise program, how to do this when severe?

    I think if you even can only do one leg raise start with one it has to be to our own level of "graded". It isn't a good place to be. I found this & there are a few different exercises for other illnesses too maybe worth a look...
  25. sleepy237

    hiv like virus

    Feelings are hard Chris. I empathise but life isn't over. There is hope. Hang in there. Drop by chat there is support around. Take care ~Sleepy
  26. sleepy237

    Low dose Naltrexone

    Busy Mamato find a doctor who is receptive, it is possible. I am from UK and start LDN next month best wishes ~Sleepy
  27. sleepy237

    Help pls! Scary ER night--Is this an OI thing??

    A doctor took my sitting and standing bp but i never had a significant drop and was told i couldnt have a tilt table test. That was last year this year a cardio ordered one and I would say that if you are having it taken by any other means than a tilt, make sure you get your bp taken standing...
  28. sleepy237

    Lamotrigine

    BTW of the two pills i did try 25mg i had lucid dreaming/racy thoughts in sleep.
  29. sleepy237

    Lamotrigine

    Actually, I took paracetamol (cocodamol) while i tried lamotrigine and i had temple spasms so maybe it wasnt the lamotrigine but the codeine combo. Interesting thanks.
  30. sleepy237

    Lamotrigine

    Thanks Leaves!