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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. PennyIA

    Muscle Relaxants for whole body ache

    I have since figured out that I actually do NOT have ME/CFS - I have gotten diagnosed with a rare disease - Dercum's Disease. Just figured it was only fair to update here as well, since what works for me probably has no context any longer.
  2. PennyIA

    High dose of methylcobalamin without folate ?

    I want to say that there's a lot of evidence that taking folate can mask further issues with b12 deficiency. And so that's probably one of the reasons the doctor doesn't want you to ramp it up. In the final end? The thing that helped me the most with the parenthesia was epsom baths. They are...
  3. PennyIA

    Dercum's Disease/Adiposis Delorosa

    I'm carrying my weight primarily in my upper body - I went from a hourglass shape (maybe 10 pounds overweight).. wearing size 8 in US women's sizes ... to a bit curvier (gained 10 pounds three years ago - when I met my (now) husband - great cook) - up to size 10 ... and gained 30 pounds last...
  4. PennyIA

    Dercum's Disease/Adiposis Delorosa

    @Moof - I want to say that some lipomas stop hurting... or they only hurt upon pressure. I can also say that in my case, it feels like they tend to grow and sometimes shrink. If they are actively growing - they hurt far worse. It certainly doesn't hurt to explore it as a possibility if it feels...
  5. PennyIA

    Dercum's Disease/Adiposis Delorosa

    My comments/annotations added below; I have been recently diagnosed with Dercums. I had been ill for 14 years; and thought I had ME/CFS for the last 10 of those years. I now believe that I have the right diagnosis. Putting this thread out there in case someone else has multiple painful lumps and...
  6. PennyIA

    MEGLATHERY MD: RCCX MODULE MAY EXPLAIN OVERLAPPING SYNDROMES

    Just thought I'd share that I have a confirmed diagnosis now of Dercum's DIsease. Still trying to work full time, but it's rough. I've had to take short term disability a couple of times. And ended up having to use a wheelchair to work in the office one day last week (I usually work from home...
  7. PennyIA

    How to balance methylation and sleep?

    I've found that I really couldn't take any b vitamins after 10am... taking them earlier in the day helped me with a lot of my sleep issues.
  8. PennyIA

    RH NEGATIVE

    I am I doubt it's coincidence. Those that aren't - wouldn't pull up the post to read it.
  9. PennyIA

    Love and hate for vitamin B6

    Wish I had better knowledge. Last I've heard is that it might be good to try p5p, but if you have a bad reaction to try the regular b6 along with p5p. I've not tried it yet as I'm currently having horrid side effects if I take any supplements at all at this point. Not sure if I've messed things...
  10. PennyIA

    CFS and bone mineral density?

    For me? I have issues absorbing Vitamin D (needed for calcium absorption) and issues with Magnesium (intolerant of all supplements, though am depleted - thankfully epsom salt baths seem tolerable) along with Lactose intolerance. I'd think we'd have to screen out anyone with issues like mine...
  11. PennyIA

    Dog breeds that can be housebound only?

    Understandable. My puppy was rescued from one of those puppy mills. And I was happy to adopt her as a rescue.
  12. PennyIA

    Dog breeds that can be housebound only?

    Every dog requires some work for cleaning up (which honestly, is more than I'd care to do). My great-aunt had a lap dog that only went indoors... it took a LOT of work to clean up after she passed away and get the smell out. It's like the urine and feces smell was absorbed into the walls. For...
  13. PennyIA

    Fleas- How do you pet owners deal with this?

    Yeah, seriously? The only thing that works around me is prevention... because treatment after the fact is a royal pain. Last time when we had no money (back many, many moons ago) and my ex-husband decided that HIS dog had to breed a litter... and we were just "watching" a friend's dog when she...
  14. PennyIA

    Cheeks are always red, is it a symptom

    A lot of you are bringing up temporary signs. Do any of you see long-term discoloration? My doc has dismissed my questions about it. But my nose is bright red 100% of the time for the last couple of years. Similar to someone who is an alcoholic (but I rarely have one drink, let alone enough to...
  15. PennyIA

    Someone else's claimed Success Story (from Ukraine)

    If he can cure 1/3 or CFS patients with this (assuming that a third are from virus subgroup)... it's still better than no treatments nor cure. If we could identify the subgroup (which Younger posted a video recently that he might have some way to test a few subgroups)... then it looks like we...
  16. PennyIA

    Working from Home

    And if anyone in that position is a friend of yours and one of your top problems is NOT one that they face? Or two or three of them? Ask them why it's not a problem for them. Either they didn't think to mention it... or even better... they have ideas for solutions. I was in a key place once...
  17. PennyIA

    Working from Home

    I was going to suggest volunteering to do the books for an animal rescue or any other small, nearby charity. Just ask if you can post your card in return for offering your service or have them include a small statement in any flyers or newsletters they post ONCE you think you can take on an...
  18. PennyIA

    Congress on the brink of repealing Obamacare

    The part that ticks me off the most is that the whole point of having an electoral college was to prevent the popular vote from picking a 'popular' conman. Only, the popular vote picked Hilary and most of the electoral college had their hands tied behind their backs by legislation, and others...
  19. PennyIA

    What is the mechanism by which sodium bicarbonate reduces lactic acid build-up?

    I'm having my lipomas issue again. Which seems to be a form of a relapse with major PEM from the slightest activities. With the PEM comes burning sensation immediately below the skin. Although I can't contribute to scientific discussion, I can state that within about 20 minutes of taking...
  20. PennyIA

    Are ME relapses like MS relapses?

    I've been experiencing relapsing/remitting symptoms for a long time. But even during my best remission periods, I was still probably only around 75% of my former self or what can be expected for a 50-something woman. I still had to monitor my activity levels in the hopes of preventing crashes...
  21. PennyIA

    skype diagnosis?

    Dr Fred Grover from Colorado has treated me in the past over skype. https://www.revolutionarymd.com/ He was VERY affordable considering what I've spent with other doctors, though I did run out of things he could suggest to help me.
  22. PennyIA

    Sodium bicarbonate (baking soda)

    Did a bit of a search and stumbled onto this thread. At this point, I am at a complete loss as to my diagnosis, as it *seems* like I may have Dercum's Disease. There is an enormous overlap of symptoms between Dercum's Disease and ME (including PEM). But I kind of wonder if Dercum's is one thing...
  23. PennyIA

    May/June magic... how does it work?

    There were a handful of days in the 80's and 90's, but for the most part it's been running in the 60's and 70's. :-/ So, I don't really get it.
  24. PennyIA

    May/June magic... how does it work?

    I'm the opposite-ish. My flare up this time started in May. And 3 years ago, my last major flare up, was from May to August. Funny enough, no issues for the last two summers.
  25. PennyIA

    patent foramen ovale PFO/Cheney/heart hole etc

    I had an endoscopy test for it. One video clearly showing the abnormality and a doctor that decided it didn't matter and wasn't relevant and refused to discuss it further. FWIW, (because I've learned a lot about it) - General Medical concensus: 99% of the people who have it, don't know they...
  26. PennyIA

    Balance issues?

    My balance was totally shot after I got POTS really bad (my dx, not the doctors). I couldn't walk without falling over because I felt like I was falling 100% of the time, and would 'correct' by throwing weight to try to keep from falling (which didn't work at all if I wasn't really falling after...
  27. PennyIA

    Controlling BP with POTS

    I was supplementing with potassium (dx and monitored) and adding salt to my diet. It seemed to help a ton with POTs and cut back the arrhythmia (which the few doctors that mentioned a non-existent murmer but all dismissed, thanks to a low potassium test result I got some good treatment anyway).
  28. PennyIA

    MEGLATHERY MD: RCCX MODULE MAY EXPLAIN OVERLAPPING SYNDROMES

    Just did a site-wide search for Dercum's... and found this thread and post. I was reading through the Dercum's symptoms as it's highly likely that's exactly what I have... and while I don't know if it's 'known to be associated with CFS'... what I can state is that a lot of the CFS symptoms are...
  29. PennyIA

    Anyone had remission/significant improvement from exceptional pacing?

    I would agree that it's more of a management tool for me, to attempt to reduce crashes. But, when life gives you a chore that you can't (or shouldn't duck), well, pacing only works as well as it can when you're following it. Says the woman who helped her husband's family for four hours today...
  30. PennyIA

    sulfur urine smell - but feeling better??

    I've read a lot about my methylations genes and some of them point to issues with amonia. AFTER, After I started methylation treatment I started to notice a really strong amonia smell with my urine. It didn't last forever, but everytime I ramped up treatment, I'd notice it again. Honestly? If...