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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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  1. penny

    If you were in remission, what tests would you run?

    I am in a remission at the moment (due to my recent pregnancy I believe, postpartum entries in my other thread: ME and Pregnancy - one case study), and as much as I'd love to believe I will never get sick again, I just don't. I have to treat it as a remission. So, what tests should I run...
  2. penny

    Acupuncture worse than sham acupuncture for CFS

    I got pretty regular acupuncture + massage for a while. I had some general improvement at the same time, but I was also doing a LOT of other things, and never really felt any confidence in whether the acupuncture was helping or not. But oddly the laying and resting during it was the most...
  3. penny

    Bedding and mattresses, do they make a difference?

    I swear to god my husband sometimes kicks the mattress in his sleep! Kicks it! What is that? It's annoying as hell, and even worse because he's asleep and so I can't really be irritated at him, it's not like he's doing it on purpose, but so annoying....so yeah, reducing transfer of motion is...
  4. penny

    Bedding and mattresses, do they make a difference?

    We got a set of linen sheets last year and love them, they seem to regulate temperature better than the nice cotton ones (less of the too hot, too cold cycle). They aren't cheap, but we just use the one set (wash and put back on the bed) and they seem to be holding up pretty well. And we have...
  5. penny

    What has helped??????

    Oh dear, just wrote five massive paragraphs and then stupidly reloaded the page and lost it all! Not up to rewriting right now :( so the super condensed version: Hi Daybyday, Just saw this, and wanted to respond since I'm in a similar boat, pregnant (32 weeks now) with POTS. I've been...
  6. penny

    Are vaccines the cause of ME/CFS?

    I personally agree that it seems unlikely to be the cause. Though the idea of there being an underlying problem (whether it's genetic, viral, what) which can be triggered by an immune challenge the body can't handle (which may be a vaccine for some folks, for others an illness caught 'in the...
  7. penny

    Are vaccines the cause of ME/CFS?

    That seems like it could be really useful in population level studies. But it seems that the current state of our understanding of what specific genetic variations mean is pretty immature. I have a few of the possibly dodgy snps related to methylation but not a lot of distinct red flags, and my...
  8. penny

    Are vaccines the cause of ME/CFS?

    I'm not sure if this is appropriate here or I should start a new thread (mod feel free to move, others feel free to tell me to start my own thread ; ), but this thread has reminded me that I'm going to be in the position of deciding what vaccinations my expected little one will get. What do...
  9. penny

    Extreme mental exhaustion after working...

    Yeah, from what I've seen on these boards I think my 'watching tv = relaxing' isn't 'normal', so odds are that's not something that would help - and oddly I find music much more draining/stressful than a quiet murder mystery (of the tv or book on tape variety). Weird, I know :) I hope the...
  10. penny

    Extreme mental exhaustion after working...

    Just on the salt front, I take 3g of salt (in tablet form) a day plus pretty heavily salting my foods. I think this helps. I can usually gauge whether I'm getting too much salt (rarely) by how it tastes to me, if it tastes good = then I'm not over doing it, if it starts tasting bad = I cut...
  11. penny

    Extreme mental exhaustion after working...

    Yeah, I'd think salt and water loading and compression stockings would be the 'easiest' (i.e. not involving a doctor) first line to try. Though compression socks/hose (you might need ones that are thigh or waist high) aren't really easy to get on ;) Then there are a number of prescription...
  12. penny

    Extreme mental exhaustion after working...

    Yeah, it sounds like OI to me too... I have more typical POTS but a "hot flash" (really feverish heat starting in my trunk, sweating and cold extremities) is definitely one of my standing up too long symptoms. And the fact that errands are easier than work makes sense with an OI issue...
  13. penny

    Work Produtivity

    This is a difficult one, and one I've struggled with myself. I'm doing better now and feel that my productivity is pretty decent now, but for a while I felt like I was just mentally unable to function and felt oh so guilty about 'working' then. I remember worrying about the ethics of it quite...
  14. penny

    LDN Experiences

    Personally the max dosage I've been able to consistently take (without negative side effects) is .55mg, so even .75 could possibly be 'too much' but the fact that you feel sharper mentally seems a good thing, so who knows! I also had anhedonia when my dosage was too high, and certainly didn't...
  15. penny

    LDN Experiences

    sleepiness or sleeplessness? I don't think the first is a normal side effect - for me it's a sign that I'm taking too large of a dose and my body isn't clearing it. Sleeplessness on the other hand is a pretty common start up side effect, and while it seems to vary, it seems that a couple of...
  16. penny

    I cannot sleep at all

    This isn't really a suggestion but have you read anything at this blog? http://nopostergirl.com/?s=insomnia She has/had what she called "weapons grade insomnia" and I believe has had some improvement. I don't think there was any magic bullet, but there might be something useful in there. It...
  17. penny

    SBM: Kogelnik, Rituximab and CFS: Jumping the gun

    Sorry but your post is just sooo full of assumptions... I don't think anyone has said Rituximab is a "cookie cutter cure", whatever that means. Most folks seem interested in it as a possible treatment, and if it is helpful, as a possible elucidation of underlying mechanisms of the illness. No...
  18. penny

    trazodone --> ambien?

    Well, you are right! I hadn't looked up the withdrawal info in quite a while so was going by memory (which I should know better than to trust ;). Thanks for correcting me on this! I'm doubly glad because I don't want to provide misinformation, but also a close family member is on a dose closer...
  19. penny

    Dangers of Fluoroquinolone Antibiotics (Levaquin)

    I took cipro near the beginning of my illness, but it was about a month after I first went to the doctor for the unusual fatigue and a month and a half (I believe) after I started having muscle/joint pain and OI symptoms. It's all a bit hard to pin down though since my onset wasn't sudden. My...
  20. penny

    trazodone --> ambien?

    I took it for about a year and a half, and did gradually increase my dose (from 10mg to 20mg nightly), I'm not sure if this was tolerance or if the lower dose helped some and I was being very cautious about increasing. My increase to 20mg coincided with my period of most consistent improvement...
  21. penny

    trazodone --> ambien?

    Same here - baclofen really helped with maintenance for me.
  22. penny

    BAD REACTION TO D3 SUPPLEMENTATION

    Yep, me too! I don't know that I can shed much light on the why, but my ME symptoms definitely get worse when I'm supplementing vit. D. My last trial with supplementation was a small dose of equilbrant which I described in these two posts (1, 2). Since then I have also started minimizing...
  23. penny

    Traveling with me/cfs

    I've flown a handful of times since becoming ill and don't have nearly the amount of wonderful info that Valentijn provided (in her thread last fall), but for me: Agreed, it's the walking and standing that is exhausting, it will make a big difference if you can avoid this I've always found one...
  24. penny

    mind sharing your rs7794745 result from 23andme? Connected to autism and ADHD

    TT here Some ADD (inattentive) tendencies before, no ASD traits/diagnoses in myself or in my extended family (up to first cousins).
  25. penny

    SBM: Kogelnik, Rituximab and CFS: Jumping the gun

    Right, and there's no reason to think that's not exactly what's happening with these patients who have decided to take this particular med. So for those people this drug fulfills this particular definition of safe.
  26. penny

    SBM: Kogelnik, Rituximab and CFS: Jumping the gun

    Your presumed litmus that it is only ethical to prescribe a drug that we know is safe and know will help, is unsatisfiable. Zero treatment options for anyone, for any disease would meet this criteria. I think Mark said it best: I can't believe we're seeing a replay of this scenario --...
  27. penny

    SBM: Kogelnik, Rituximab and CFS: Jumping the gun

    What's good for the goose is, well, you know ;) You say we can't use other patient groups as a basis of comparison, but then do just that in your ETA. Of course the safety profile may be different, but that's true for every treatment and every individual person. Actually it's true for every...
  28. penny

    Low-dose naltrexone (LDN) - how's it working for you?

    Hi Callie, I'm curious about some of the details of your experience - what your dosage of LDN was, how long you took it and what specific meds you felt it interacted with? That kind of information can be useful for folks thinking about adding LDN or who are currently taking LDN but might be...
  29. penny

    Placebo Effect may be Genetic

    Hmmm, interesting, though I just assumed this effect you describe is related to the fact that our illness has no accepted/widely successful treatment, so in many scenarios it's experiment or give up. So I'd see a "propensity to experiment" as related to the relative hopelessness of traditional...
  30. penny

    Placebo Effect may be Genetic

    Maybe I'm being nitpicky but this doesn't seem like a placebo effect. It seems that for something to have a placebo effect it should 1) be perceived to effect a primary symptom of the illness 2) actually need to be ingested/applied. So while yes, the idea of a new possibly useful med...