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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. L

    Comment by 'Leslie' in 'keep gettiong worse...so tired of being tired'

    Reading these post's here helped me in a weird way. I hate to hear when someone is sick, or feeling so badly like this. I know how sick I am, and I can relate in so many ways. I feel I am getting worse, for some reason I didn't think I would get worse. I to hate the thought of becoming bed...
    • Leslie
    • Blog entry comment
  2. L

    statistics of ME/CFS

    I was wondering if anyone has heard of the statistics of ME/CFS in the US. I have heard many different numbers.....6 million? or.....for every 100,000 the range of 7 to 3,000!! Shocking that we don't know. What has anyone heard? I would be interested to know. Thanks, Leslie
  3. L

    Dealing with Pushy People

    Carrigon, you are to nice. I have been there, trying to be "healthy" when I am actually so sick. I have been very sick now for several months and not coming out of this one, or so it seems. Some days I am in PJ's all day and don't care. Gratefully I have a husband who helps me. I have my...
  4. L

    Comment by 'Leslie' in 'ohh i caused a scene in the supermarket due to the disablity discrimation'

    If I didn't have TV I would be sooooo bored, irritable, cranky with nothing to do. I can't sit at the computer long, everything starts to hurt, so I have to lay down. Try laying down 24/7 (practically) with nothing to do. Boring. Sorry, I don't care what anyone says, enough is taken away from...
    • Leslie
    • Blog entry comment
  5. L

    Comment by 'Leslie' in 'a certain protocol, has anyone heard of it?'

    Paula, We lived in Lake Wylie, the other side of Rock Hill. I know where Lancaster is. There was a support group for this protocol that met somewhere in South Charlotte. I never went to it, just seemed to good to be true, and only a few said they felt better. Leslie
    • Leslie
    • Blog entry comment
  6. L

    Comment by 'Leslie' in 'a certain protocol, has anyone heard of it?'

    Thanks for those who responded. I lived in SC, near the NC boarder and there are some there with a support group who say this is the best since sliced bread. I have a friend there who wanted to know about it, she is very sick and looking for something, as we all are. Leslie
    • Leslie
    • Blog entry comment
  7. L

    Leslie

    • Leslie
    • Blog
    • Blog entries: 2
  8. L

    a certain protocol, has anyone heard of it?

    Has anyone heard of the "Guaicinafin Protocol?" Created by a Dr. in So. CA. It is a medication and diet. I am not sure if I spelled the medication correctly or not. Some people say they are able to get out, work, have a life......etc. Hard to believe if it did work so well it would not be...
  9. L

    Comment by 'Leslie' in 'Can we talk about dying?'

    MEG, I to think about dying. My daughter in law was 38 and died March 3rd of this year, she had ME/CFS. They said they could not find a cause for her death. No one ever believed her illness, she did not have the best of Drs. to say the least. It hit me hard.....we both were sick of the same...
    • Leslie
    • Blog entry comment
  10. L

    Comment by 'Leslie' in 'Life is an Ever Changing Wonder'

    Lisa, I don't know your story.....almost 10 years in a tent, so cold!! Was this voluntary, or.....?????? I can't even imagine.
    • Leslie
    • Blog entry comment
  11. L

    Article: The Obama Promise on Chronic Fatigue Syndrome

    I sent my letter....but, I cannot imagine he would even remember the question. As for the letter, I do hope he gets it, but......being in the health care field for a long time, and now with Obamacare.....very much doubt we are on the radar, we are $$$ drain. Unfortunately it comes to that...
  12. L

    Rare Good Days

    Rare good days....I can relate. I became sick sometime early 2000, I was pretty bad for quite a few years, then had some good years, not great, but could get out. Now......rarely a good day. maybe a few hours. I am not sure why. Stress? Yes, there has been a lot of that lately. Probably...
  13. L

    Article: People With ME/CFS Protest in Front of Department of Health and Human Services Building

    Well, one more thing.....I thought that Obama was going to look into this???? The letters sent, the questions asked of him at the town meeting???:Retro confused:
  14. L

    Article: People With ME/CFS Protest in Front of Department of Health and Human Services Building

    RivkaRivka, thank you so much, and all of the others who got out there, told their story, got the sign together. It is something to be very proud of, and I personally thank you. It is so difficult for most of us to even get dressed in the morning. In my 10 + years of being sick I have had...
  15. L

    Endometriosis, do you have it?

    I found I had severe endometriosis at age 32. It was another 17-18 years before I was very sick with ME/CFS. I was working up to it for about 5 years or so before the tipping point at age 48-50, full blown ME/CFS. Related? I have no idea. After a complete hyst for the EM at 32 a few years...
  16. L

    Article: CFS Hits Big Time "War on Mystery Disease" on Front Page Wall Street Journal

    Just to give a quick response to the comments and articles....I really need to reread the article again, as well as comments....I have had a "crash" now for weeks, which is a problem for all of us? That is again, something others don't understand. As for research, as a nurse, for a while I...
  17. L

    Article: The Obama Promise on Chronic Fatigue Syndrome

    I would also like to add that the effect it has on families and loved ones..... Leslie
  18. L

    what is the best description of your me/cfs?

    I think it's the question that makes me hesitate. I do have times of "remission" so to speak, but even during those times I don't feel like I used to before I got sick. If I don't pace myself it is time to pay!! I used to be pretty healthy, and yes, it seemed like all of a sudden I was sick...
  19. L

    No one REALLY gets it

    Nielk, No,most people don't get it. It is unfortunate, but they don't. When I can get myself together and get out I would be asked....."how are you?" "How are you today?" On and on and then it is all about my illness, how I have been doing, I do appreciate, but.....then I never hear from...
  20. L

    Have you been turned off church and church life but not jesus?

    When I can get to church I always feel so much better. i am lucky in that there is a service at 1030 on sunday, an evening service on Sunday, Saturday and Wednesday. So, I can pick and choose. We also do not need to dress up. There is always a pastor to pray for us, no judgement for not...
  21. L

    Were you ever a nurse or do you know of a nurse that has CFS/ME?

    Wow, look at that 80% to 20% Ummmmm.......virus??? Ya think.
  22. L

    Were you ever a nurse or do you know of a nurse that has CFS/ME?

    Yes, I am a nurse and have ME/CFS, or Fibro, or what they called "connective tissue disease."
  23. L

    Have you ever had remission from CFS?

    Yes, there have been times when I have felt better than others, or been able to go out, do things, especially if I have paced myself. I could have a few weeks of feeling pretty good. Lately, with a lot of stress I have been homebound. I would say with the stress, worse than I have ever been...
  24. L

    Deaths

    "Sudden Adult Death Syndrome?" I have never heard of that!! My "ex" daughter in Law died suddenly March 3, 2011 and no known cause on the autopsy report. She had told me she had Fibro/CFS, she had suffered from seizures and migrains as well. I believe she was also on anti-depressants or had...
  25. L

    How much should we tolerate before speaking up?

    Who knows if this was related......no one knows enough about this "disease" to be sure of anything. As a nurse I did research....a lifetime ago it seems, and literally everything is so subjective. Basically, we all have some symptoms in common, some (of us) have more than others, some have...
  26. L

    How much should we tolerate before speaking up?

    My "ex" daughter in law just passed away suddenly, in her sleep (?), she had told me she had Fibro and CFS.....
  27. L

    energy-saving hygiene habits (or lack thereof)

    Good post. I guess I do pretty good, still or yet. I don't shower everyday like I used to, and brushing teeth, horrible to say, but sometimes I forget a day. Hair, not like I used to,make up...unless I go out, and that is minimal, and since I don't go out much...... Someone told me they...
  28. L

    "So you're really faking it?!"

    I just went to a wedding. We drove about 2 1/2 hours there, stayed 2 nights, drove home. I felt lousy the entire time, but....got dressed, did the hair and make up....looked "normal." So, most people, when I go out, see me looking pretty good, on good days, but the other 6 days, in my sweats...
  29. L

    What kind of bed do you have?

    Great topic!! Finally my husband and I bought one of those "foam" mattresses. Not a "tempurpedic" but one similar. I have had for years, and now on my 2nd one a "Cuddleewe." (as in Cuddle Ewe) It goes on top of the mattress. They last about 5-7 years. They are "divine." The best thing I...
  30. L

    Palpitations

    Yes, I have had them for years, but now it is worse. It could be anxiety now that has made them worse being sick. As I sit and type I am getting them, and dizzy....feel lousy today and have for over a month now. I used to have a few scattering of good days....those are gone, frustrating.