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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

    Any testing to prove CFS for disability

    I am posting this trying not to get too excited, but I phoned the SSDI office and was told verbally that I should receive a letter within 5 days stating that I was approved!! (Thank you LORD!!) Until I see the money, I will remain cautiously optimistic. The man was so nice. He said he wanted...
  2. C

    What is worth the money?

    Thanks for all of the info! I see some improvement with diet but find that diet falls apart when I feel my worst. I crave high carb, sugary foods, and eat them knowing they will make me feel worse because I'm too tired to make a meal. I also crave salt (lay's potato chips usually which are high...
  3. C

    Shingles again WTF

    I know this thread is older but I wanted to respond because I have used cimetidine (generic Tagamet) to get rid of both shingles and a viral sore throat that lasted 3 months. My pastor got shingles and I recommended it to him and his were gone within a few days also. I have had shingles twice...
  4. C

    What is worth the money?

    Yes! Exactly!
  5. C

    What is worth the money?

    I loved my job, but pushing through really hurt my health even more. I do not regret filing for disability at all.
  6. C

    What is worth the money?

    I think it's important to be both hopeful and realistic. It has brought be some peace to finally file for disability. I might have retained a little more function had I done it sooner, but I worked until I could not work one more minute, and know I did everything in my power to keep going. We...
  7. C

    Doctors that treat CFS (SEID) in West Virginia.

    I tried several antivirals and none helped. Tagamet (cimetidine) was the ONLY thing that helped my 3 month long sore throat and shingles (same family of viruses as EBV). If viral symptoms are your biggest problem, you might want to try it. I think I took 2 pills at a time, 4 times per day, which...
  8. C

    What is worth the money?

    One thing I respect about my family physician is that even though he has been trying to help me for 20 years and has watched my health decline to the point of disability, he would do anything to help me feel better and is truly compassionate.
  9. C

    What is worth the money?

    I will check into medical qi gong but I'm sure it's not offered close to me. What benefits do you see and how long do they last?
  10. C

    What is worth the money?

    I wound up telling him that I knew a lot of people didn't believe that it was a physical illness, but that I had always been very positive, happy, and highly motivated to do my best in everything I did, and it had destroyed every aspect of my life. Then he did seemed slightly compassionate and...
  11. C

    What is worth the money?

    I find this to be very true. The more time I spend flat on my back, the better I feel.
  12. C

    Doctors that treat CFS (SEID) in West Virginia.

    I am also in WV. My family physician has sent me to the Cleveland Clinic in 2008 where my OI was diagnosed, but really they just said to up my salt intake, wear support hose, and take (I think it was) Florinef. My Dr has sent me to every specialist known to man to try to rule out other things. I...
  13. C

    What is worth the money?

    If only I had been able to think that quickly!! I was so mad at myself for sitting through the rest of the appointment. I wish I had stood up and walked out the door the minute it came out of his mouth. I was too stunned to respond. It has been a long time since I had experienced that attitude...
  14. C

    What is worth the money?

    I have been considering seeing one. If I am awarded disability, it will be a game changer because we are surviving without it. We have managed quite well but I have had some massive medical bills from a hospital visit that, combined with a loss of my income, have made the last several months...
  15. C

    What is worth the money?

    I will check into these. I've had minor improvement in d-ribose. Magnesium citrate is super helpful for me. I used to take it regularly, and will probably start using it again. I will check out the others. The daily crushing fatigue doesn't seem to be alleviated by anything, though, and it is my...
  16. C

    What is worth the money?

    I saw a counselor when I first had to leave my job. She was invaluable in helping me deal with that loss.
  17. C

    What is worth the money?

    I wonder sometimes if this could possibly be something else, but I have no idea who I would even see. I feel pretty confident it's not though. I need to read more to understand the methylation issues better and how these test results would impact treatment. Hmm. Glad you pointed that out...
  18. C

    What is worth the money?

    Thanks for the link on free testing. I had my hearing very recently and am waiting for the decision. My lawyer did an excellent job and feels optimistic about a favorable decision based on the judge's comments at the end of the hearing. If I am blessed with an income again after 3 years, I am...
  19. C

    What is worth the money?

    This illness can be expensive. I am trying to decide if a few things are worth the money or not. I've never done 23andme or 24 hr cortisol saliva test, (really never done anything but mainstream MD testing). I'm leaning toward doing 23andme because I'm adopted and have no medical history...
  20. C

    What tests should I request/8 wk sore throat

    @LornaRaindrops I got it to go away by taking 2 Tagamets 4 times a day. It came back a few weeks later and the Tagamet worked again. I took a chance with it out of desperation when I remembered that I used it to get rid of shingles several years ago.
  21. C

    Any testing to prove CFS for disability

    Thank you for the truth. I wish I knew this. It would have made it easier to accept the wait if I had known up front. I'm so sorry it took so long for you! Congratulations on enduring through that. I don't know if I have the strength to fight that long.
  22. C

    Any testing to prove CFS for disability

    Not all areas take that long. Where I live there was just a problem with a judge who was investigated, so I think that tied up the courts. I had no choice but to quit work, so we have had to make a lot of financial adjustments. I wish I had saved and prepared better when I was working. It's...
  23. C

    Any testing to prove CFS for disability

    This is where I am now. Waiting to get in front of the judge. I have waited so long. I really had no idea it would take so long or be so hard. I pray that I have a favorable judge because I don't know what I'll do financially if this stretches out any longer.
  24. C

    Any testing to prove CFS for disability

    i will check into that. Thanks.
  25. C

    Any testing to prove CFS for disability

    I did copy some but I don't know what I did with the copy. The attorney probably has access to all of that. I do have ongoing appointments with my Dr and he is now referring me to a rheumatologist. I was denied twice and now am waiting my court hearing, which they said would take 12 months but...
  26. C

    Any testing to prove CFS for disability

    At first I didn't have an Atty and I filled them out on my own. But the legal assistant sends me things and tells me to fill them out and I don't ever have help from them. This attorney has a good success rate but I feel a little panicked because there isn't much in my recent records and I don't...
  27. C

    What tests should I request/8 wk sore throat

    @minkeygirl How much Famvir do you take?
  28. C

    Any testing to prove CFS for disability

    I do have an attorney now but I've only spoken to the legal assistant, never met with the attorney. I did a horrible job filling out the papers on my own. I was having such a rough time thinking that I put quick answers.
  29. C

    Any testing to prove CFS for disability

    Thank you @WillowJ for all of that. It is SSDI, not private insurance. Thank you @Kati. I'll check that site out.
  30. C

    Is it really worth the fight?

    I don't know if you are a Christian or not, but no matter how bad I feel I can pray for others. Gives me something to do and makes me feel useful.