Loungers #4 And a Poll RU more CFS or FM or Both

Discussion in 'Chit Chat' started by spacee, Nov 5, 2009.

  1. spacee

    spacee Member

    Hello All. Thanks again for making my week better in every way.

    I was diagnosed with both CFS and FM by Dr. Lapp in 1991. However, I had so much trouble with the CFS that I had not even noticed the tender trigger points he found.

    Both with more CFS. Last two year autoimmune is just about as bad. Been since 24 years.


  2. victoria

    victoria New Member

    My original dx I argued about (in a nice way) all the time with my original doc who is also a friend... I say I've had CFIDS because I do not and still don't have the pain.

    However, since I do have the tender spots - well actually I have way more than the ones they show for FM - he insists I have had FM. I still don't understand how that shakes out if you aren't in pain like others here and in my support group, but still have the tender spots.

    So my question is, how many have CFIDS but still have all those 'tender spots' that are supposed to dx FM?

    Anyway, at this point, I also have lyme and who knows what else... Since I became ill with mono for a year complete with meningitis and hepatitis 39 years ago, I've never been right and cycled up and down. I can only think it really opened the door to a LOT of things.

    We went to Morelia today, about an hour's drive away, to stock up on things from Costco and 2 supermarkets that carry things that the nearest 'big' city doesn't have... as usual it took all day, I'm exhausted.

    We also took our friend to get blood test done - she's had downward spiraling health for past 10-15 years, finally found out she had a TB tumor on her liver (nowhere else). She didn't test + on any test, yet, that's what they found on biopsy after seeing it in an MRI. She's on heavy duty abx for 9 months, but she can already tell she's feeling better despite the major surgery to remove it and the daily abx cocktail.

    Highlights of the day was the drive to and from the city - beautiful stunning scenery of the mountains (dead volcanoes) and the riot of wildflowers, blue sky, fluffy clouds. Wish I'd brought my camera.

    Also fun was driving past the local cemeteries in my friend's town, as the decorations are still fresh from Noche de Los Muertos - LOTS of huge wild marigolds and other flowers in wired displays. Again, I wish I'd brought my camera, it was gorgeous in the sunlight! I'd go back, but it's an hour drive from me.

    And tomorrow I get to look forward to.... nothing! :) Makes me happy!- I know I'll be bushed.

    But I'm ecstatic I found some Italian sausage, LOL, it's hard to find. Fewer choices certainly make me more grateful for what I do find, hehe!

    LOL you were right, Linda, I WAS speed reading... but at least I knew the country started with an "n" even if I didn't catch anything else!

    OK I can't remember anything else other than the 'speed reading' comment from the last thread... even tho there were things that I wanted to comment on last night written earlier. I sure wish PH had kept the old format where you could view the whole thread as you replied!

    all the best,

    [This Message was Edited on 11/05/2009]
  3. Ranigar

    Ranigar Member

    Besides Sjogren's my dx is FM and what the Rheumy doc calls a lot of Lupus like symptoms.Arthritis especially in my back along with asthma,and the usual GERD,IBS just about rounds everything out in this AI illness.
  4. rocky76

    rocky76 Member

    Trygeminal Neuralgia
  5. jole

    jole Member

    I was diagnosed with severe FM, terrible insomnia...lots of other issues. Right now I have a doc who is leaning strongly toward Lyme also. But in my area it's hard to find anyone who knows how to treat, and I have so terribly many allergies it's even harder to find something I can take. So......

    Vic, the scenery there sounds like heaven to me! You are one lucky lady...although I'm sure anywhere has it's negatives also...but the weather and scenery would certainly make up for a lot. I picture your home in my mind, and to me it's beautiful, cheerful, relaxed, easy to maintain, and oh so serene.

    But my total lack of Spanish would probably make it a nightmare for me...lol...so guess that's one positive in my list of why to stay here...lol...along with no money, missing the kids, etc. etc. You do, however, give some of us a peek into our dream! Thank you.........

    I too wish we could see the entire thread to visit with everyone. I always forget to pull up a second screen so I can see it, and heck...I can't remember the day of the week, much less what I just read! So forgive me everyone, but I do enjoy all the posts! Today I hope to order ink for my printer, empty trash cans, and bake a dessert for my hubby..he has such a sweet tooth! Probably the extent of it unless I get a sudden burst of energy............later all!
  6. bct

    bct Well-Known Member

    Hi Folks! I am lounging all day, after my trip to local doc. yesterday. Town is 8 miles away, a beautiful drive this time of year, yellow maples, red dogwoods.

    As to the Poll: CFS since 1994, very bad since 2003.
    No FM, but I do have peripheral neuropathy.
    Also have chronic lymphocytic leukemia (doesn't need treatment; better then
    diagnosed in 2001).

    So, CFS is my big bug a bear!

    Victoria : Loved your description of your drive to Morelia -- even if it was to Costco! (lol). I have seen pics. before of the marigold decorations. I imagine you were beat when you got home, yes?

    Well I am in recovery mode from my minuscule journey yesterday. Hey, I bought some cyclamen in bloom! Very pretty. Also some bulbs of yellow crocus. My saffron is in bloom now, very pretty also.

    I'm going for a nap or coma now, whatever.

    Regards & hugs to all,
  7. spacee

    spacee Member

    Sounds so lovely. Reminds me of my visits to my mother's home this time of year...yellow maples were gorgeous. I don't think they had the red dogwoods. Those would be beautiful.

    Down here in we have Raintrees. They tell us that fall is coming. The leaves start turning PINK and Yellow (!) the end of Sept or first of Oct. The bees love this. Then they dry and fall off for the winter.

    Of course, it is still HOT but they know fall is coming. And today, it feels like fall is here!

    Sleep well, my compardes.

  8. rockgor

    rockgor Well-Known Member

    Like most of us, I guess, I have a menu of ailments including CFS but no
    FM. Yesterday was pretty productive. I kinda dragged around the house for
    the first half of the day. Then went to the library AND the market

    Victoria, I got some "Dulce de Leche Egg Nog". "Sweet milk", right? Anyway
    it is caramel flavored. Never seen it before. Do you have this where you live?
    It's ok, but I think once was sufficient.

    And then, after a long nap, I got up and watered the plants and fed the
    cats (and two skunks who stopped by) and did the dishes and fixed a
    meal. I had eggs; was 9 PM, so what meal would you call it? Break-sup?

    Spacee, what are Raintrees? Tried to look up Raintrees and all I got was
    resorts w/ that name and somebody's blog and things too fierce to mention.
    I remember Raintree County. A fabulous book I read when I was a teenager.
    Pretty good movie to w/ Liz Taylor and can't remember. Montgomery Cift?

    Barry, I don't think I've ever seen cyclamen in a garden. Only in stores and
    nurseries. Oh, excuse me. Didn't mean to disturb your coma.

    Did you make your dessert, Jole? Here's a little mnemonic device I invented in
    my school days. "Dessert" has a double letter, just like Jello. Desert has one "ess"
    just like sand.

    Well, dawn is approaching. Up all night again. At least I am old and retired. Don't
    have to worry about making an 8 o'clock class or a settlement conference.

  9. spacee

    spacee Member

    I think you confused your mind/body by eating the eggs...snicker. They thought you were trying to say "Good Morning". Not really, it is a bummer to miss a night's sleep! I usually only miss two hours on a bad night which I have accepted as not bad at all...just don't make any morning appts with the doc or dentist.

    Those Raintrees. It sounded to me like a nickname that people around here use. I will have to do some detective work to come up with more info. They are extremely unique (to me).
    Seems the birds "plant" them more than people because of the places they are. They start out like oak trees (small) and grow to be huge. Very eyecatching when they do the color changing.

    This is a nice, rest day. Going to wash my hair and we will have subway for supper. I love subway tuna subs on Sat nite.

    Fay, hoping your the site is able to fix the problem.

    Everyone, Fay's has to go to her profile to post on this board. So if you would help her out. Go to her thread and hit the "inappropriate button" to try to get someone to notice that problem and bump it up if it is slipping down!

    I hope that is a good idea. If it isn't then don't do it! Your call.


  10. rockgor

    rockgor Well-Known Member

    Well, I hope Fay gets gets her profile fixed. Haha! Sounds like a problem
    for a plastic surgeon.

    A new poster named misrebel posted on the previous thread, so I'm moving
    her post over here.

    ______________________________________________________________ misrebel
    11/7/09 11:58 AM Cool website and thread !

    Hey ya'll I'm new to this site.....I'm the only caregiver for my 81-yr old father who has severe dementia (dx in April '09). Moved him in with me mid Sept......now he is my full time job. When he was released to me I was told he only had about 3 wks to be around. Now 1 1/2 months later he has improved with the structure and care he's receiving....only meds are for insomina and agitatation....which sometimes I think I need, lol.

    Anyhow I liked this thread....cause things can get pretty boring sitting around all day and it's interesting to see that most people fill their days the same as I do.

    I've been without a computer for 2 1/2 yrs and fnally got one this past week....hopefully this will help me stay sane while caring for dad.

    It's a beautiful day here in central Arkansas, upper 60's, blue sky and lots of sun. Would love to go on a road trip around the state to see the autumn beauty in it's glory. Maybe next year.

    Reply Add to Favorites Add to Friends Ignore this Post Ignore this User Report as Inappropriate
    11/7/09 1:48 PM Hi Misrebel

    Welcome to the board. Are you a Miss Rebel or just miserable? In either
    case, the board is a good place to visit.

    I read your profile and saw that you are in Arkansas. Do you know
    Roger Miller's song, "Arkansas"?

    Spacee recently started this series of threads. The current thread is
    titled "Loungers #4 and a Poll etc."


  11. spacee

    spacee Member

    Her father improved under her care!! haha

    Welcome. We have very loose rules. Post on which ever thread you feel like. We will find you. And try to help Fibrofay get her posting corrected.

    Other than that, remember no one's name or everyone's name or somewhere inbetween. We just do the best we can day by day.

    I will have to tell you kids, that I have been called into duty although I will have time to check in tomorrow before I go.

    My daughter in law needs someone in the house at midnight while she makes an airport run to get my son. Apparantly, I am trustworthy for that job but I have to be in Orlando til Tues. I will try to eat as much junk food as possible and think about you kids.

    Enjoying the cooler weather! Hoping it will last a few more days so we can take the baby to the park.

    Keep yourselves out of trouble and as well as possible.

  12. isiselixir

    isiselixir New Member

    I was diagnosed with CFS in 2006 when I came down with it gradually. I've never had FM.
  13. jole

    jole Member

    Where does the time go when you're not having fun??? Don't know, but it still keeps on ticking.

    Hi to the newbies! Good to have you with us......we need all the help we can get to keep on moving....lol...

    Went with hubby to get groceries (go twice a month) yesterday. Am running into walls today and seeing double (and no I do not drink...haha). Not sure what the problem is, but think it's probably just a sinus infection or something simple. No energy.

    But the good news is I finally did get the scrapbook paper I needed to finish up my daughter's wedding pages. It's only been two years now........so, trucking right along!!! Also ran through the drive-through at Long John Silvers...that was good..no calories or cholesterol there, I'm sure, but we hadn't been there in ages. So maybe it was the eating in the car that was so exhausting?? LOL

    Going to read awhile, or see if Rock disturbed Barry's coma. Check back later. You all have a great day!!!............Jole
  14. Ranigar

    Ranigar Member

    Totally get that.My balance is off too!Husband pushes the cart and I have to hang on.If he isn't paying attention we veer off to the left everytime because of me.When I go up the stairs I can't have anything in my hands because I go back and forth like a ping pong ball.Pictures get knocked off the wall,nope I don't drink either.
    Fall is here and so are the allergies for me.I need all my energy to keep moving through the day.Time for the round of Drs. next week.Three different Drs. and all I can count on is refills of scripts.That's all there is to offer.But I'm fine and then I'm not.Anytime,anywhere with anyone so what are ya gonna do.The best you can.
  15. victoria

    victoria New Member

    Que pasa? Nada mas aqui, as usual, LOL... just watching our flowers flower!

    Jole, Barry and others... yes it is wonderful here, our house is low maintenance but would be even lower maintenance if the guy who built it wasn't a carpenter from Joliet IL originally LOL - he did what he knew, built a board/batten house out of thick planks.

    No problem with bugs (termites here are a different kind, so don't have to worry about them), it's just that it has no thermal qualities like it would've had, if it had been done the way most homes are done - adobe/cement. The house we rented originally was built that way, so it stayed cool when it was warm out, and vice=versa.

    And Jole (I think?) I don't know spanish, either/anymore despite my 3 yrs in HS - was pretty good then, but, that was a very long time ago. There are many english speakers here, even in the little town we are close to (St. Clara del Cobre, famous for copper). So, locally, the butcher, the fruit stand owner, and the hardware store owner for starters are all totally fluent in english - plus many in the stores.

    Many have actually returned from the states with their families as particular places (California mostly) have become too dangerous -- ie, one family we know moved back with their son who was age 14 and didn't speak ANY spanish. Some older people also have grown up in the US/Canada and then come here because of family, etc (some set up import businesses).

    The doctors in Morelia we have seen (yes, unfortunately, for medical, tho it's been very cheap yet excellent care) have almost all been fluent as well.

    As I think I've said, the exchange however is fewer choices and higher prices for electronics. I wisely brought a new computer from US as I'd have a hard time with the programs in spanish and a spanish keyboard! - I have a hard enough time figuring things out on this, LOL!

    RE the Wedding scrapbook... 2 years? That's fast Jole - my wedding pics from 31 years ago are still in a box, with all the photos from having a family onward LOLOL. I DID at least sort thru them and get them in order per date while I could still remember... but that's it. Another project, someday...

    Ah, I'm exhausted, LOL... I need someone to take care of me too. Altho my DH does a pretty good job of it, he goes to the local markets daily/as needed, and even occasionally cooks something I like, LOL!

    Barry, you awake yet? Linda/Spacee, hope you've enjoyed your time in Orlando... did you get to eat chocolate? Please tell me yes... and welcome to everybody new, and old, and in-between.... and more word play from Rock is greatly welcome, you always make me laugh!

    all the best,

  16. FibroFay

    FibroFay New Member

    Wow, is it ever good to be un-stuck from my posting nightmare! Holly fixed the problem for me. Thank you for all your help and kind thoughts in rescuing me! The board looks heavenly! It's good to be back.

    Well, my diagnosis of 14 yrs. now is Fibromyalgia. I got sick with a flu-like illness and never got well. Personally, I believe I have CFS. I don't remember my testing numbers, etc., but once I challenged my beloved doctor by saying I think I have CFS. He said, "It doesn't matter if it's Fibro or CFS, they are both treated the same way". I believe the doctors I've known would rather treat Fibro than CFS. But, that's my own idea.

    We are having Indian Summer weather here the past few days. It's just beautiful! It's 66 degrees today. Nights are cold though, and we've had freeze warnings a couple of nights recently. The extreme temperature changes from nighttime to daytime are hard on my Fibro. I mind all kinds of extremes. The tropical storm that's on the way is affecting me already. Pain, pain, pain!

    Yesterday my grandkids came to visit and we played Scattergories, the card game, and ate apple pie. Today I did laundry and showered, and rested. This evening is Dancing With the Stars.

    Rock, that is too funny about getting my profile fixed sounds like a problem for a plastic surgeon! haha. I really would do well to get my profile fixed, for real. I'm trying to think whose nose I would like to have replicated on my face. hmmm....

    I'm going to get comfortable in front of the TV with a snack and a warm throw. I'll see ya all later!

    Nighty Night.
  17. Ranigar

    Ranigar Member

    Glad your back on Fay!As you might have noticed I was silent on advise for a possible fix.I call my son for help when my doesn't do what I want.
    Another nice day predicted today but a cold front is moving in.I wake up stiff and achy.I baked zuccinni cookies yesterday.It was a new recipe and I've got lots of the summers crop in the freezer to use up.They were really good and the men liked them because I didn't say what was in them.
  18. misrebel

    misrebel New Member

    Thanks for moving my post Rock.....now will ya run down to Wally World and pick up some groceries?...LOL

    Hey all I'm not CFS or FM, just a daughter taking care of her Dad learning about this disease called dementia first hand.

    Today was the day I planned on loading Dad up and going thru the bank and dropping off rent BUT he had other plans; after Frosted Flakes he walked over to his bed and said "This looks like a good place to stretch out" and he did. Any other day he'd be up and around or taking cat naps, kinda frustrating for me when it's such a Beautiful day out and I think we both could enjoy some fresh autumn air.

  19. victoria

    victoria New Member

    It IS already afternoon... where does the time go? I'm still on the 'schedule' that so many are, where you get increased energy in the evenings after dragging all day. One thing I do miss here is the ability to go to 24 hour stores like Krogers or Walmart LOL on MY time schedule!

    Beautiful day here tho... I hear the monarch butterflies are starting to show up in Mexico where they winter. Those places are far from me tho, so, I don't see any. I wonder if any migrate from southern Mexico to the northern parts for that... have no idea. Anyone have milk thistle growing to feed them on their way???

    We DO have lots of hummingbirds tho... in fact the first place we lived (rented) is a town named Tzintzuntzan-- means 'place of the hummingbirds" in the indigenous purhepecha language- the birds are here year-round, especially by the lake!

    OK starting to wake up a bit... gotta do a few things to make my life 'meaningful'... LOL...

    TTY'all Later!
  20. spacee

    spacee Member

    It's good to have puter and read the posts. I'm tired but I have taken my ritalin and should be awake in about 30 minutes ....for about 1 hours. Don't you just love meds....sheesh.

    I am jealous of Rockgor. He knows how to move posts. And that is not fair that technology has moved past my know how...so I will just take it out on RG. For today.

    ((Hugs))) to MsRebel for taking care of her dad. But you know, pretty soon, she is going to be telling ppl at the dementia board that we are here and there will be an onslaught of loungers...:)).

    I have Ellen on. I love her new look. I guess she has a new stylist. They are playing the musical chair game which is pretty funny. I need a new look, ok a new body and look. I need to be 30 years younger but who would want to go through that again!

    Yes, I had raspberry chocolate cheesecake. And the next day a chocolate milkshake for the our chocololate. I find that if I eat i out and don't bring chocolate home, I don't think about it at night..haha. I hope anyway.

    It is good to be home but I couldn't help but notice, the clutter is way out of hand. I'll get someone right one that!

    Hugz all.


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