• 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. realjoy

    Genetic HPA Axis Dysfunction? Any Known Studies/Doctors? Need to help my daughter

    Thank you Ema :) Well, its not just AI. This seems to be a problem with the entire endocrine system. She can't live life at all. Can't go out with friends, can't even climb her stairs, shop for groceries, etc. She is a 23 year old new graduate who can't even work or live life. We are both...
  2. realjoy

    Genetic HPA Axis Dysfunction? Any Known Studies/Doctors? Need to help my daughter

    Hi All, I've been "living" with Fibromyalgia, ME/CFS, Hashimoto's, PCOS & adrenal insufficiency for years now. I was very healthy as a child. Problems initially started with puberty. I developed PCOS, hormone issues & accompanying depression. I was put on the pill. In mid-teens, I did...
  3. realjoy

    1st "Disability Doctor" Visit - AWFUL!!!

    LOL! It's too funny that you can "hear" my frustration and anxiety Thanks for your help. My attorney said the same thing about worst days, but if I do that entirely then I would literally put down nothing. I went by my bare minimum. It was really embarrassing to answer the hygiene stuff...
  4. realjoy

    1st "Disability Doctor" Visit - AWFUL!!!

    Thanks ecoclimber :) Now I'm completely confused. I don't know where to find "my rights". When I search online, I seem to just find opinion. And I was trusting my lawyer, as this is all he does and he is well-known for it. Aaaah! I just don't know what to do now! OH...and I just got this...
  5. realjoy

    1st "Disability Doctor" Visit - AWFUL!!!

    Esther12 and caledonia: I hired a disability attorney at the beginning of the process, since I knew with my cognitive issues I would end up screwing something up if I did it myself lol caledonia: I thought that was true too, but my attorney said that I HAD to go to this appointment, or DES...
  6. realjoy

    1st "Disability Doctor" Visit - AWFUL!!!

  7. realjoy

    1st "Disability Doctor" Visit - AWFUL!!!

    Thanks everyone for your responses and support :) They mean more than you know. WOW...so this wasn't a usual 'disability' exam? No one else has had a doctor hit them with one of those mallets all over? What have your exams consisted of? DES sent me a very short questionnaire to fill out...
  8. realjoy

    Comment by 'realjoy' in 'Please help!'

    Hi Cort :) Sorry I'm so late responding! I pushed myself way too much again, and have been 'cocooning' for the last few weeks. Yes, that was Aubrey :) I'm so proud of her! I'm glad you got a chance to read her bio and see her site. She is having trouble getting final numbers (it went...
    • realjoy
    • Blog entry comment
  9. realjoy

    1st "Disability Doctor" Visit - AWFUL!!!

    I'm in the early stages of my case, and DES set up an appt for me with a doctor. I was confused because it was at a radiology office, so I thought maybe they wanted to do imaging or something. WRONG. This guy used to be an "occupational doctor". He sounded like he was English, going by his...
  10. realjoy

    HELP NOW! 24 hour/$5000 challenge WPI fundraiser

    Done and done :Retro biggrin:
  11. realjoy

    Rant about perfume!

    Deodorants bother me as well. I used to love the smell of my husband's deodorant and aftershave, but even that is starting to really bother me :Retro frown:
  12. realjoy

    Stiffness and Pain

    I get this when the barametric pressure drops, and also when I REALLY overdo it, but I also have Fibromyalgia. Nothing helps it for me except resting for days, unless I am lucky and am traveling where there is a hot tub! I can't wait for the day that I can afford one so that I can get relief...
  13. realjoy

    Rant about perfume!

    I have had a sensitivity to certain perfumes since my late teens. It was usually the 'grandma pefume'...like White Shoulders...that would make me sick and give me an instant headache. But in the last few months it has become horrendous! Now it seems like its any perfume! Tonight I had to...
  14. realjoy

    Dizzy, Dizzy, Dizzy

    I get dizzy mostly from overdoing it, like when I tried to grocery shop today (ugh!). I didn't think I would make it home! For me it is a low cortisol and/or low sugar thing. Doing the activity uses up the little cortisol i have, which affects blood sugar (low blood sugar) leading to the...
  15. realjoy

    Best CFS and/or Fibromyalgia groups to donate to?

    Hi Tom =) Yes, he is *wonderful* and was very supportive with the entire cause, particularly because he is a big proponent of education. He posted a blog on the site with a link. As far as the contest, it is over for her now. She won the first two rounds, and lost in the third with a 9%...
  16. realjoy

    realjoy

    • realjoy
    • Blog
    • Blog entries: 2
  17. realjoy

    Please help!

    I hate to ask again, but my daughter is the one that is fighting to win a scholarship AND raise research money for CFS & FM. If you could take a moment and register and vote for her, and have each family member do the same, it would make a HUGE difference! Here is the site she created about...
  18. realjoy

    Best CFS and/or Fibromyalgia groups to donate to?

    I don't know how to do that? If someone could tell me I would appreciate it :)
  19. realjoy

    Need for Quietness and Solitude - are these typical CFS/ME symptoms?

    Interesting! I've had this for the last several years. I call it "cocooning". There are times that I feel like I have to do it in order to center myself or de-stress. I've lost many friends because they just didn't understand why even talking on the phone was too much (it really wears me...
  20. realjoy

    The See Saw known as CFS...do you have this?

    Have you been on any treatment for the adrenal issues? I had BAD adrenal fatigue for years, and we were successfully treating it back in 07-08. I was feeling better and my pain & energy were getting better. Then I quit smoking (I know, I know...awful!) and they nearly stopped functioning...
  21. realjoy

    What are your symptoms after physical activity?

    I hear ya! I *wish* I could do any amount of exercise, but I just can't. I get out of breath and get so weak I have to sit down. Then, I pay for it for days, get swollen lymphs, more muscle pain, etc. As you said, not worth it. As far as chlorine, that's sooo disappointing. Hot tubs...
  22. realjoy

    What are your symptoms after physical activity?

    I used to get this. Turns out that I was low in B12 (blood test confirmed) and I guess a sore tongue is a symptom, as is weakness and tiredness. You may ask for a test to see, or if you can't do that try out some sublingual (under the tongue) Methylcobalmin (sp?) and see if it helps
  23. realjoy

    Best CFS and/or Fibromyalgia groups to donate to?

    Thank you! Yes, there were 23 regions in this round, and the two top vote recipients in each region will move on to brackets. And I'm happy to report that SHE MADE IT to the top 64! Thank you Tom, and everyone else who voted :) Our newspaper may also be running a piece about it, so...
  24. realjoy

    Best CFS and/or Fibromyalgia groups to donate to?

    The Link Has Arrived Sorry for the delay. DD worked hard to put together a site, and then had to redo it. Anyway, here is the link: www.adimeandadream.com I also had a really wonderful conversation with the gentleman that runs pocketmoneyfund and he is going to write a blog about...
  25. realjoy

    Best CFS and/or Fibromyalgia groups to donate to?

    Hi Frank :) Thanks so much! That would be great! My DD has been putting together a website to tell people about her contest & the fundraising. I did waaaay too much last week and am still trying to heal from my crash (when will I ever learn?) so I am behind. The voting starts tomorrow, so...
  26. realjoy

    Anyone else have this experience after doctor visits?

    Nice to know it's not just me :) This doc is new...he's a rheumy. I had to go to him because of the disability app (they want to see a "specialists" opinion). I don' t like him very much...he is kind of wacky and doesn't really ever ask me questions about how I feel and has told me that he...
  27. realjoy

    Best CFS and/or Fibromyalgia groups to donate to?

    Thanks sarahg :) I don't know if she has done it yet or not, but I did go read the thread...very helpful! We'll definitely donate here and pocketmoney. We also want to find one specifically dedicated to FM research as well. We talked and decided we would list 3-4 groups that the funds would...
  28. realjoy

    Best CFS and/or Fibromyalgia groups to donate to?

    Hi islandfinn :Retro biggrin: Thanks for the welcome! I"m not new here, I just dont post much LOL Thanks for the link and for offering to merge the two threads. I think it would be great if she can be successful with this...get a scholarship AND give back at the same time. We'll see how...
  29. realjoy

    Anyone else have this experience after doctor visits?

    Going to the doctor, especially the new rhuemy, wears me out. Before starting to see him 3 months ago, I had never had my 'trigger points' pressed. It hurts like hell, and continues to hurt in some spots (or burn) for up to an hour after. After I leave, I feel a combination of relief it's...
  30. realjoy

    Best CFS and/or Fibromyalgia groups to donate to?

    Besides here :Retro biggrin: My daughter is competing for a scholarship, and had the idea of using it as an opportunity to give back and also bring more awareness. It's one where you win by the amount of online votes that you receive. She wants to pledge $0.10 per vote to groups and/or...