Where is everybody?

Discussion in 'Fibromyalgia Main Forum' started by mrpain, Jan 28, 2007.

  1. mrpain

    mrpain New Member

    I notice the board isn't moving as fast nor is there as many people on here anymore... Is there something new or is there something else going on? Where is everybody? It would be great if everybody was getting healed!
  2. jole

    jole Member

    I think a lot of our bunch have been spending more time in the chat rooms since they are open again. I would like to try them once but I can't seem to get in. Has something to do with my computer. But it's okay, I'm happy enough here!!
  3. springlakeorphan

    springlakeorphan New Member

    6 months ago, it seemed like there were 10 "newbies" a day. Maybe they all found out something we should know! The ultimate cure!!!!!
  4. Shannonsparkles

    Shannonsparkles New Member

    But now I'm up. :)
    (( ))
  5. nerdieduckie

    nerdieduckie New Member

    I'm actually having a bit of a social life at the moment! *gasp*
    The only drawback is then I'm too tired to spend time at the computer, lol. I still lurk when I can though...
  6. boltchik

    boltchik New Member

    Do you ever go over to the chitchat board? I also post less on this board since the chitchat board has opened. Although, I do come check this board for medical info. and to help out if I can. Kim :)
  7. shar6710

    shar6710 New Member

    I copied/pasted slammed's post above to his thread "Valcyte and Veterans Administration" if anyone would like to respond to him there. I was afraid it would get lost here.
  8. jmcdelaney

    jmcdelaney New Member

    HI. Joann here (I am one of the newbies you were referring to). I wish I had found out something that would make this go away for all of us. I started out spending quite a bit of time here and found it very helpful, supportive and definitely put my mind at ease as far a believing that this IS what is actually wrong with me. Unfortunately I found that spending so much time here also made me focus WAY too much on my pain. I tend to come back on days when it's unbearable, and try to get chores done on my better days. (You can guess why I'm here today!) Kind of like the opposite of a fair weather friend ;)

    I thank you all again for being here.

    Joann
  9. roge

    roge Member

    erikmouldwarrior - mmm interesting

    well i know am allergic to alternaria mold and my sinusitis is one of my worst problems. and Mayo is saying most sinusitis is caused by allergic reaction to mold and "especially" alternaria. of course two ENT's I have spoken too don't take the Mayo studies seriously....again, arrogance and just unbelievable.

    There is no way my sinus pain, upper teeth pain, facial pain and pressure and a head feeling like 80 pounds is caused from just allergic rhintis as these ENT's keep saying. It is definitely sinusitis yet cat scans are clear although I have read MRI is more sensitive for fingal sinusitis than cat scan so hopefully i can twist my Dr.'s arm to get an MRI.

    I will be getting immunotherapy soon to see if this will help the mold allergies. This is a big committment and I cant see mold being the main problem for me (I dont know how it could explain me not being able to walk some days (a new symptom in past 4 mths for me and getting concerned with my decline in the last 2 years) but I am willing to do this even if it helps with 20% of my symptoms and in particluar my sinus ones. Of course then there is the whole candida thing as this is fungal as well and while I have explored this in the past I think I need to go back to this with more effort this time as I do believe and feel at times that I have a big fungus growing inside of me.

    would be interesting to see how many FM and CFSers are indeed allergic to mold.

  10. Catseye

    Catseye Member

    I for one am getting better fast after figuring out what supplements to take. Now I can get out of the house on my own and walk around alot. I'ts about time!!!

    So yeah, the better I feel, the less I'm on here and I tend to go to the chit chat board more for entertainment. I come here to answer people's questions because we can do alot more for ourselves with diet and supps than our doctors would have us believe.

    karen
  11. julieisfree05

    julieisfree05 New Member

    I haven't been around much since my FM/CFIDS has been in remission (more than a year now!).

    I know that many people get slammed in the winter, and I hope that it's not happening to too many of you.

    Wishing you all the good health that I've been blessed with!

    - julie (is free!)

    No one feels
    the pain you feel
    All I know is
    love can heal
    what nothin'
    else can heal.. - Radney Foster
  12. Kayleen

    Kayleen New Member

    I don't visit the board as often as I used to because it depresses me. I found the right kind of help and feel better than I have in probably 6 or 7 years. Unfortunately I can't get everyone to move to North Platte Nebraska to get the help they need. I feel so bad for everyone that it depresses me.

    The other thing is I am just really busy with my family.
    My mothter has Ahlzheimers. My son is getting divorced...he has three little kids...I'm swamped with my job......the list goes on and on.


    I visit when I can...and I wish the best for everyone.
    Kayleen
  13. mrpain

    mrpain New Member

    Everyone who stated on this thread that they have gotten better, did not mention at all what helped them to get that way... I would be shouting it from the mountain if that happened to me....Of course their's no mountains in Florida.

    So what did you take to improve? Come on; let the cat out of the bag! I'll try it at least once to see if it works for me....And my doctor would try anything too! He's good like that.. He doesn't mind using me as a guinea pig just to see the results.... I've had about 30 years of practice doing just that...
  14. lenasvn

    lenasvn New Member

    Yoodll!

    I am not better or worse, just busy. I am caught up in trying to get funds to go back home, getting some papers signed by my ex for my daughter, trying to get my bills paid, etc. It is crazy and havoc and I haven't had much time. I have relaxed more in the evenings, watching my favvo shows while my daughter sleep WITHOUT FEELING GUILTY!

    I have no idea how my plans will pan out, we'll have to see. My dad is at ill health too and i really want to get home and be with him while there's still time.

    My daughter is hanging on to my arm, whining, I better go!
  15. angellwolffe

    angellwolffe New Member

    I've been lurking alot. Had a big crash and spent three days in bed at christmas. Then got really busy. Been taking some supplements and waiting for another big crash to come, its been three weeks and the only pain I've been in is my sciatic acting up.

    Angell
  16. Prunella

    Prunella New Member

    Hi Erik,
    Thanks for posting. I have always considered mold to be a big problem for me. What are the "stupid little clues"? How are you avoiding those molds? Can you fill us in?

    I also noticed the board is moving much slower lately. Anyway, let us know more about the mold issue and what specifically you have done to avoid mold. Thanks!
  17. Kayleen

    Kayleen New Member

    I have probably had FM 10 years but just got diagnosed a year ago. I had all the symptoms of FM including pain everywhere! I couldn't hardly walk or move. I was exhausted all the time. I could barely get my job done.
    I definately have FM with all the tenderpoints and the problems that go with it. Chronic infections, acid reflux, girl problems, FIBRO FOG, sleep problems etc. In fact I hadn't slept through the night in 4 years.

    I am a sales rep for our radio station and found out I had FM by looking it up on the internet to find out more about it for an ad. I checked with my doctor and he sent me to The Center for Health in North Platte Nebraska.

    Dr Loretta Baca is a Holistic Doctor. She taught in Denver Colorado and some how ended up in North Platte.

    Anyway this is what I do to stay upright!

    I visit the Doctor once a month and receive Frequency Specific Microcurrent. I get an IV with Magnesium, High Dose Vit C and other nutrients. I also get Novacaine shots in my lower back, hips and upper back...or wherever it hurts that month.

    Here's what I take:
    AM:
    1 600 mg Musinex DM
    1 Aleve
    1 Nexium
    Ultra Inflamax drink mix
    1 x a week Vitamin D

    PM:
    1 Magnesium/Potassium Combo
    1 Aleve
    1 Bio Identical Hormone

    That's it!

    I now have no problems shopping, working etc. I even take care of my 3 grandkids all at once. (Under 6 years old)
    I do have to tell you I get tired. And I have pain. I have noticed with the extra stress this last three weeks the pain is worse. But it is controllable. If I have more pain I just take an extra magnesium and Dextramathorphan. Yes...DM works for pain. Try it!
    I believe the Bio Identical Hormones helps with the sleep.
    Vitamins and herbs help with energy.

    I was taking at least 2 Musinex a day sometimes 3. And 4 Aleve. I am now down to one Musinex and two Aleve.

    This has all worked for me. I wish that everyone could go to Dr Baca. She's a miracle worker in my eyes. I hope you all find your miracle doctor too.
    Kayleen




  18. Catseye

    Catseye Member

    Sorry, mrpain, maybe I should have mentioned: I have a very long and detailed post in "what worked for me" about what I've done. It's mostly a mixture of the supplements that Teitelbaum and Cheney recommend with some other stuff I found out on my own. It's around #89. And here are Cheney's and Teitelbaum's protocols which you can look at for yourself:

    http://www.immunesupport.com/library/showarticle.cfm/ID/3346/T/CFIDS_FM/searchtext/teitelbaum%20protocol

    http://membres.lycos.fr/chrisdel2/association/cheney/cheneyII3.html

    for energy:

    http://www.cfids-cab.org/MESA/DrMyhill-373.pdf

    These are some other important articles; if you study all of these articles I've listed here, you should be able to figure out how to help yourself from home with diet and supplements and also things you can discuss with your doctor.

    http://cheneyoncfids.blogspot.com/2006/05/cardiomyopathy.html

    http://www.dfwcfids.org/medical/cheney/heart04.part2b.htm

    good luck!

    karen
    [This Message was Edited on 02/20/2007]
  19. mrpain

    mrpain New Member

    Thanks karen; When my fog clears I'll do just that....
    Sometimes it's hard to get motivated to work at researching information when I know it would be helpful.

    I'll have to wait for one of those better days when the pain, fatigue, fog, and all the rest isn't so bad.

    Thanks to all who have responded. It does help to know what is working for some, even though we all are different and don't respond equally...
  20. mrpain

    mrpain New Member

    WOW! I read your bio and can't believe all that you've gone thru.. You definitely deserve better than that and hopefully things will turn for the best. I hope your ssdi hearing will go your way and the stress will disappear..
    Take care of yourself!

    kayleen; I'm glad things are looking up for you.. Thanks for the information you've shared about what your taking to get better.. Hope things keep improving!

    lenasvn- a lot of people get mrdad and mrpain confused.. I hope things will get better for you also.. Take care!