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

    To become a member, simply click the Register button at the top right.

Search results

  1. evatious

    Advice on thyroid treatment

    Thanks @daisybell, that's really interesting, I'm going to bring it up next time I talk to my doctor/s.
  2. evatious

    New Daily Persistent Headache, treatment and causes

    Hi @ joe12, have your specialists ruled out TED (thyroid eye disease)? I have Graves' disease and when I become hypothyroid I get migraines and subsequent tension headaches straight after the migraines - from holding my head oddly and from the associated muscle tenseness from prolonged pain and...
  3. evatious

    Advice on thyroid treatment

    I hate having to split meds, it's just one more stressful thing. I really wish they'd formulate them in smaller amounts. I try to keep an open mind about side effects passing after a few days or weeks, but it's not sustainable if they're too bad or long-lasting. Not on top of everything else.
  4. evatious

    Advice on thyroid treatment

    The migraines do completely suck but they're something I've lived with since the onset of puberty. Becoming hyperthyroid actually stopped them for the past year or so. Now that my levels are fluctuating so much, I go from no migraines for a couple of weeks, then 3 migraines over the course of...
  5. evatious

    Advice on thyroid treatment

    That's very interesting and no I haven't tried LDN, I'd love to. I think it looks like there could be a significant beneficial effect on the Graves' from it (or for many auto-immune linked diseases by the sounds of it.) Did you have a specialist prescribe it? It's not something that has come up...
  6. evatious

    Advice on thyroid treatment

    @daisybell, I know you posted this a while ago but I was wondering how you are going on PTU? I also had to switch over from carbimazole which managed to make me feel even worse! (as if such a thing was possible.) I'm finding it very difficult to regulate my levels which fluctuate between high...
  7. evatious

    Vascular Ultrasonography

    You're quite right, I didn't notice your avatar. As far as I know lipedema does only affect women and the weight loss doesn't affect the lipedema at all. But it does reduce fat where it can and I think it is helping with the lymphedema (which goes to the tops of my legs.) My jeans are all...
  8. evatious

    Vascular Ultrasonography

    My lower legs also have swelling @Eeyore. I have ‘cuffs’ of tissue that ring my lower calves. I already had lipedema though (which is a not-very-rare-but-rarely-diagnosed type of adipose tissue disorder.) The lymphedma is secondary. I’ve been waiting for a vascular referral to come through to...
  9. evatious

    A Grab Bag of Symptoms (Joint, Lymph, Vascular...) Thoughts?

    I have Graves' Disease (hyperthyroidism) but my anti-thyroid meds aren't successfully tweaked yet. Unfortunately, my specialist wants me to be towards the hypo end of the range. Which has the crappy added side-effect of bringing back primary dismennorhea, depression and migraines. I just can't...
  10. evatious

    A Grab Bag of Symptoms (Joint, Lymph, Vascular...) Thoughts?

    Thanks @ahmo, I've not looked into sulfur being an a problem. I think one of my genes suggested this might be an issue though and pyroluria is another thing for me to look at. It doesn't *seem* diet related to me (as yet) although I've yet to test lots of foods I've eliminated. I have a...
  11. evatious

    A Grab Bag of Symptoms (Joint, Lymph, Vascular...) Thoughts?

    Thanks @ahmo I've been reading through that. I don't think my condition is EDS although I have a few similar/same symptoms. I'm really just frustrated that my vascular referral is taking so long to come through. I think a vascular specialist might be able to examine me and do whatever scans and...
  12. evatious

    Lack of chatter about the Ketogenic Diet

    I'm just here conversing about ketogenic diets and my experience with them. Hence the thread title, which I find had a conversational bent. I'm always happy to clarify the 'what' and the 'why' of my approach. I remember what this forum is about, hence why I joined to participate. As in one of...
  13. evatious

    Lack of chatter about the Ketogenic Diet

    My diet is severely restricted (due to IBS and significant autistic sensory issues.) Hence why I'm bringing back in some carby vegetables in small amounts. It's about micro nutrients, not just macros for me. I've never been on the edge of slipping out of keto but 50 grams is closer to what most...
  14. evatious

    Impact of social support on the relationship between illness invalidation and shame among individual

    That's an impressive selection! I can't unsee that lot o_O What a massive tool. So much bias...
  15. evatious

    Impact of social support on the relationship between illness invalidation and shame among individual

    People are [mostly] ableist. Almost all of them. Invisible illness and disability is the last bastion of [acceptable] unacknowledged bigotry... Some of my doctors are among the worst.
  16. evatious

    Supplements do not have any real effect on symptoms

    This is something I’ve been addressing in recent weeks as my health fluctuates. For me, it’s critical to keep a health diary (or extensive notes) about my supplements, nutrition and symptoms. I’m tracking *everything* that goes in my mouth and whether I have a specific symptom (either physical...
  17. evatious

    Choosing to be depressed?

    Ok, I did read through most of that and came away with: "Future research should also identify why depressed people are more motivated than nondepressed people to experience sadness." Nek minnit... phrenology... :cautious:
  18. evatious

    Lack of chatter about the Ketogenic Diet

    @cb2 It's definitely the keto. Or at least, keto proportions of [paleo] food in relation to my already extensive dietary limitations which have been in place since the beginning of the year. While I was just doing paleo I was STARVING, eating carbs (healthy ones) and putting on weight...
  19. evatious

    A Grab Bag of Symptoms (Joint, Lymph, Vascular...) Thoughts?

    That's a good tip, thanks! I've just started looking into it. I do have translucent skin that might indicate something else going on and that has been associated with EDS. But I also recall that the translucent skin (particularly noticeable on my legs with very visible hair pores) arrived with...
  20. evatious

    A Grab Bag of Symptoms (Joint, Lymph, Vascular...) Thoughts?

    I have CFS and also significant anxiety and memory/attention problems that have become *much* worse in recent years. I'm autistic though so some of that is pre-existing, just made worse by illness. I haven't been tested for lyme or other infections. It's something I wondered about (but I may...
  21. evatious

    A Grab Bag of Symptoms (Joint, Lymph, Vascular...) Thoughts?

    So, for the past couple of years I’ve had issues with my joints and I wondered if I could get peoples' thoughts on this bunch. My GP never really explains what he’s looking for - hence my search for answers. A few of the tests I've had done: HbA1c: 32 mmol/mol A ENA antibody: negative...
  22. evatious

    Lack of chatter about the Ketogenic Diet

    Good scales make a difference and you do need to count gram macros for everything that goes in your mouth. Even seasoned ketoers do this (so they can work out where they can improve things or make adjustments based on their physical goals.) I also tend to buy pre-washed salad greens which works...
  23. evatious

    Lack of chatter about the Ketogenic Diet

    It's usually 50-100grams of leafy greens, maybe a 1/3 or 1/2 a medium carrot (about 50grams and I try and get both purple and orange carrots) and a few times a week I add in half an avocado (between 70 and 110gms depending on the size.) I roast pumpkin and kumara and add in just a few pieces...
  24. evatious

    Lack of chatter about the Ketogenic Diet

    Major cravings while in ketosis are often an electrolyte imbalance. You have to watch your electrolytes and up your water consumption as the diet is naturally diuretic. From what I've noticed, most ketogenic dieters (particularly when they start out) do a lot of prepping food for the week so...
  25. evatious

    Lack of chatter about the Ketogenic Diet

    Sounds like a FODMAPS sensitivity. I can eat very small amounts of some FODMAPS but in any larger concentration it causes an IBS flare-up. Onions are one of the worst for most FODMAPS sensitive people.
  26. evatious

    High Intensity Training (HIT) and Body By Science

    Thanks for this post olliec, it's very interesting to me as someone who has recently started exercising (steady state and light weights.) A few months ago I couldn't walk down the road without wiping myself out for several days. I wonder if the short bursts of muscle activity simply don't...
  27. evatious

    Feedback sought on genes & supplements

    Thanks crowquill, I'm having a read of that.
  28. evatious

    Feedback sought on genes & supplements

    Hello, I’m feeling a bit overwhelmed! I‘m only in the early stages of understanding what my genes may mean. I’ve input my data into various places (including genetic genie, promethease etc.) I’d particularly appreciate feedback on my supplements and what I might need to look into further or...
  29. evatious

    Lack of chatter about the Ketogenic Diet

    If you're only losing a comparatively small amount of weight you could try the ketogains macro calculator. http://ketogains.com/ketogains-calculator/
  30. evatious

    FADS1 and FADS2 SNPs?

    I’m autistic and don’t have any problem with fats. In fact, my latest diet is ketogenic and is working brilliantly. Removing FODMAPS trigger foods has eliminated my IBS-D. I only have a few homozygous snps in that bunch if it's of any interest. FADS1 rs174546(C;T) rs174547(C;T) rs174548(C;G)...