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

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  1. C

    Drinking baking soda (sodium bicarbonate) may treat autoimmune disease

    Huh? Cancer comes in four stages, doesn't it? There are also several known pre-cancerous states. All the people I know IRL who have CFS/ME have varying levels of the disease, from as the PP says 'mild' to completely unable to live without round the clock care. Sorry if i misunderstood your...
  2. C

    Other médical conditions

    Do you mind me asking what you take for your Psoriatic Arthritis? I have just this week gotten this diagnosis after ten years of being in the Fibro/CFS/Lyme Disease wilderness whilst never feeing that what I had fit perfectly into any of these. I had no idea you didn't actually have to have...
  3. C

    Worse or better after menopause?

    @digital dog Just FYI, Mirena is the devil. It (I believe) CAUSES fibro and CFS. It is a progesterone only form of coil and there are currently tens of thousands of women pursuing a class-action law-suit against its makers in the US. The progesterone it uses is called levongesterel, but...
  4. C

    Shakiness after driving

    I get this ALL THE TIME. I'm convinced it's not low blood sugar. I think it's something to do with the concentration of driving combined with the sitting in that position for too long. Whenever I have to concentrate I tense my muscles. When I drive anywhere there is a point after about an hour...
  5. C

    Anyone heard of two siblings with ME?

    I have been ill since aged 40 with fairly severe fibro. My younger brother has had ME twice, recovered both times. His son however, now 23, has had ME since birth. I'm convinced there must be something genetic in it.
  6. C

    Acetate Smell

    I've had this. Is it like a very strong, sweet, not altogether unpleasant but very unusual smelling urine? I've had it about five times and each time it lasted a couple of weeks or more. I tried telling various doctors but as i thought got brushed off each time. The only interesting thing for...
  7. C

    Fibromyalgia a sleep disorder? A recovery story

    Yes! Exactly this. In fact any time from about 4am to 6am if I wake up I am likely to feel pretty much pain-free. Then I go back to sleep because I am terrified of not having slept enough and having to get through another day on not enough sleep (all a big cycle in my head) and then when I wake...
  8. C

    My biggest fear is deconditioning

    yeah - that's what I'm constantly asking myself. If my body is capable of this, then how can it also be so poorly?
  9. C

    My biggest fear is deconditioning

    I don't know why either, but one thing that helps me a little is a Fitbit thingy that displays a constant heart rate. Walking or stretching, whenever my heart rate surpasses 140 and doesn't come immediately back down I know I'm going to be in trouble. Before the monitor I think I knew this...
  10. C

    Jen Brea: What happens when you have a disease doctors can't diagnose - TED Talk!

    Exactly. In fact the two friends I personally have with Lyme don't have joint/muscle pain at all whereas both have been a big part of my illness from the beginning.
  11. C

    I need your first month/season/year of illness for research please?

    October 2009. Gold Coast, Australia. I live in Los Angeles but my husband was filming there so we went with him as I'd just given birth to our first child. Within a week of arriving I knew, looking back, that this was more than just post-natal discomfort. Edit: What I meant to put across but...
  12. C

    How to avoid a crash when you strained yourself

    @JaimeS That is SO well put: 'That awfulness that masquerades as sleep when I'm crashed'. Exactly that. And why oh why? Why sometimes and not others? I've just woken up from 9 hours of tossing and turning and feeling hot then cold and drinking water and peeing and peeing again... when all I...
  13. C

    My body wants estrogen, dislikes progesterone - conundrum

    Thanks @L'engle. So you felt that both progesterone AND estrogen caused flares. Interesting. Did you feel that they both caused same sort of flares or did you feel there was a difference? I've just found out that one of my 23andme gene mutations makes me an ultra fast metabolizer of estrogen...
  14. C

    My body wants estrogen, dislikes progesterone - conundrum

    Any updates on this old thread? I've just worked out that 6 years of pain and intense fatigue could possibly be related to massive doses of progesterone I took for my IVF cycles. Or progesterone stored in my fat, Or just being very intolerant to progesterone. Have just started HRT hormones just...
  15. C

    Xeno/estrogens link to CFS/Fibromyalgia - Success!!

    WOW. Just read this entire thread. I had come along the same path as you (albeit with a lot less detail and understanding) but I was on Accutane too around 15 years ago and wondering if it had payed a part. On a separate journey I was researching CYP3A4. I haven't been able to make head or...
  16. C

    Pregablin / Gabapentin masking symptoms

    Funny you should ask this now. I've just come off gabapentin after about 6 months, because I actually believe that although it was helping with pain and sleep, it was enhancing my fatigue and apathy. I'd been doing really well on Effexor (SNRI) for pain and Midodrine for my dysautonomia. A...
  17. C

    What Types of Fatigue Do I Experience Poll

    Third this! Kind of glad to hear it really. But only because on occasion, which I've told various doctors this, they've decided I couldn't possibly have CFS/ME/FMS because they'd never seen anyone with the condition who didn't also have brain-fog. Which has led to endless hours of lying in bed...
  18. C

    Sleep well...wake up destroyed...different every morning

    j I'm exactly the same. I have two young kids so I have no choice but to get up to change diapers, fix breakfast etc, but every minute of it is painful and I'm just counting the minutes until I can lie down again. I think the fact that the doctors can't seem to find anything 'wrong' is why I...
  19. C

    Sleep well...wake up destroyed...different every morning

    Oh God - that's awful Gerald. I'm so sorry to hear that. And you didn't even take it for sleep issues in the first place! There's a guy that posts on youtube who was given klonopin for something like 5 days and he thinks he's still messed up by it three years later. Terrifying. It makes me...
  20. C

    Sleep well...wake up destroyed...different every morning

    Totally agree about the hormones Daffodil. But how do I work out if I have infections? I've had so many blood tests over the years - every time I see my rheumatologist they take what feels like a whole armful of blood and test for everything under the sun, but nothing has ever been outside the...
  21. C

    Sleep well...wake up destroyed...different every morning

    See this is why I don't think it's the klonopin. Admittedly my issue was with an anti-depressant and not a benzo and it's possible there's a difference, but when I was withdrawing from Pritisq it was every day. At the same time every day. And the symptoms would last until I caved and took a pill...
  22. C

    Sleep well...wake up destroyed...different every morning

    Exactly the same here. Sleeping has always been an enormous pain in the butt - right back to when I was doing my final exams for university and I would lie in bed and watch the digital clock move from midnight right through to 7am when I would get up. It's worse when I have something important...
  23. C

    Sleep well...wake up destroyed...different every morning

    Ooops! Just realized I said exactly what you said Gerald only later. Have never understood the mechanism of addiction. I came off Pristiq once and it was hell. Took about a year till the withdrawal symptoms went away. But desperation kicked in and I ended up taking it a second time after my...
  24. C

    Sleep well...wake up destroyed...different every morning

    I guess what you could do would be to take a teeny tiny bite of one in the morning on a day where you don't have much to do as soon as your symptoms kick in. Klonopin has a pretty long half life (i believe) of up to 50 hours. So when you wake up you should have quite a substantial amount in your...
  25. C

    Sleep well...wake up destroyed...different every morning

    I too an convinced it's linked to sleep. in some way. When I first got ill we were in Gold Coast Australia for 4 months while my husband was doing a job. I had an 11 week old baby. I started complaining that the pillows on the bed in the apartment were too hard, that they were hurting my neck...
  26. C

    Sleep well...wake up destroyed...different every morning

    @soxfan I have the exact same thing. Sometimes I just wake up feeling like crap straight off the bat. But others I feel pretty damn great for about an hour, maybe two, and then it all goes to pieces. Just like you, no two days are exactly the same. One day it's bone-crushing fatigue, the next...
  27. C

    Cycles

    I've been keeping a symptom diary for a while, and it makes absolutely no sense. In the moment, if you asked me, I could isolate the things I thought made me crash: - going longer than my limit on the treadmill (limit is walking 15-20 mins but I have a superhero complex that makes me want to...
  28. C

    Patent filing for the use of nitric oxide with or without B-cell depletion in CFS

    No but back when I was healthy and stupid we used to take 'poppers' (amyl nitrite) when we went out, mainly because of lack of money for more decent recreational drugs. The headache was horrendous. People always says it was because nitrogen part dilated the blood vessels and the hard skull...
  29. C

    Patent filing for the use of nitric oxide with or without B-cell depletion in CFS

    Aargh! I just made that point a good 8 months after you did - guess I should have read further down the thread! Only reason I'm chiming in is because I feel much WORSE when I drink alcohol, and much better on a vasoconstrictor. So maybe something that dilates the vessels would be a good idea for...
  30. C

    Patent filing for the use of nitric oxide with or without B-cell depletion in CFS

    Re: Prevalence rates - All the countries you cite are English speaking countries. (I'll include Scandinavia in this because most Scandinavians speak English better than I do). This is an English language forum. Italy has a very large population of diagnosed CFS.fibro sufferers - I'm guessing...