anyone get better?

Discussion in 'Fibromyalgia Main Forum' started by NanceZ, Jul 20, 2003.

  1. NanceZ

    NanceZ New Member

    I figure that once people get better they don't come and post here any more. Maybe I'm just hoping that lots of people get better and back to their oldish lives they stop posting.

    What do you think?

    (be gentle if my Pollyanna-ness is over the top)
  2. mamafurr

    mamafurr New Member

    i would still post if i was better...i think...yea i would. anyway, not better here. but today was better than last week and that week was worse than the week before that.
    only can tell you, and not to be cynical, that my fm is progressing, not regressing. but depends on the day and i can tell you that i was better 10 yrs ago. of course i'm getting older and peri-menopause is here.

  3. ssMarilyn

    ssMarilyn New Member

    but I still come here because I'm home all day...alone...and I think there are alot of nice people here. This is my social life!

    Marilyn :)
  4. JaciBart

    JaciBart Member

    I heard that somehere or read it. Seems like that to me, I have only had it since May 19 last yr and I have definitely gotten WAY WORSE!!!

    I have a few areas of improvement but for the most part I have gotten progressively worse and keep on getting fatter and fatter, like 75 lbs in that time, does the weight ever stablilize???

  5. KellynZ

    KellynZ New Member

    I think that sometimes I put reading posts at the bottom of an already long list and don't give you all the time I should. If I felt better, I would reply and post more I think. I know that I am posting today because I have time to read the messages - I am off work for a while so not as many critical things to finish before I try to sleep tonight.

    I hope you are finding some relief and lots of support. Hopefully when I do start getting better, I will be able to identify what helped and share it with the group.

  6. Shirl

    Shirl New Member

    I just love Pollyanna's, as I am most definately not one of them :)

    Yes, I am better, a good 80% since I have been on this board which is over two years now.

    I doubt if I would want to go back to my fast paced, busy, busy, lifestyle before I was knocked for a loop with FM.

    If I got a 100% (which is a dream), I would still be here. I got so much from this board for my health, that I would just like to give a little back, whatever I am able to give.

    Plus like Marilyn said, this is a big part of my social life now for the above length of time. Before I got the computer, I read book after book after book when my body would not allow me to do anything else.
    Of course I still read, but not as much.

    People do come and go, thats life. In any other other situation that is how human nature is.

    I don't know of anyone that recovered 100% from FM/CFS, but many do go into remission. I did a few times, twice for a year, the other time for 6 months. And yes, I did go right back into my mad world of activity, but I would never do that again.

    I have solved my sleeping problem, and most of my allergies, headaches, the FM pain, and spasms are down to a minimum, the flares do not last for months and weeks now, but for days, and a few other problems.

    I always have pain, but its the kind you can live with instead of the screaming kind I had before.

    What I am working on now is IBS and the sometimes occuring fatigue.
    I doubt if I get the fatigue totally under control, but the IBS is something I feel there is relief from. I just have to find out what.

    I think any attempt to go 'back' to my old style of life, do everything for everybody kind of life would only throw me back were I was before.

    I guess you can say I learned, from FM, to 'stop and smell the roses', instead of just digging the holes to plant them!

    Take care, and I sincerely hope you go into a total remission or they find a cure.

    Shalom, Shirl

    PS, I forgot to mention, I have had FM for over 20 years......
    [This Message was Edited on 07/20/2003]
  7. horsegal

    horsegal New Member

    As compared to this time last year, I am better. I have had some very rough days and weeks in between times. I hate to say this (because I have been beaten mentally about it) but after I got some pain relief, I was able to exercise, which I know makes everything better. If I don't have pain relief, I'm absolutely shitty. I can't say anything else. I'm very much better (not good English) but the minute I don't have pain relief, I go straight downhill. I do suffer some "fibro fog" meaning that I can't articulate like I used to. Many people just think that that is my flaky personality,....they laugh and think that is just me. I really don't like the laughing, but just joke along with them and think...if you only knew. I can put up with all that as long as I don't feel like I weigh 300 lbs. and can't walk to my car and up the stairs to my work. Yes, I am much better for the moment, but there is always the fear that my doc. will suddenly cut off pain meds and not work with me. I take other things than pain meds,... suppplements, sleep aids, etc. , but those are the one things I can't do with out. Ask me next Tues. evening when I have the next app. with my new-found doc. and see if she continues to help. My answer might be different.

    Hugs & good thoughts
  8. dolsgirl

    dolsgirl New Member

    just sometimes it's not as bad as others...dolsgirl
  9. spmary

    spmary New Member

    HI..I'm not sure. Some days I feel better with this dd. I don't think I have as much pain as most on this board,I have more brain fog and fatigue. But feel better some days. I was dx 12 yrs. ago and have improved since then. But still say goofy things. My balance is worse, and the pain I have is from arthritis, I think. The worse part is trying not to remember what I used to be able to do. I try to focus on what I can to now. That's not much. I think my husband is finally accepting this. Not much support before. I used to paint and my husband built me a nice little studio but I can't seem to remember how to do anything. So seldom use the studio, except to go to be alone and listen to music. But I love to be around people and miss that too. I like this board because the people are so kind and understand. lol to all of you, Mary
  10. tandy

    tandy New Member

    Not at all better~ And I have tried alot of supplements,and I even get a little exersize each day. So I'm not a lazy,"let this DD just take me" person! I'm a fighter with a tolerance to pain~But it wears thin at times. I believe if I had my pain under control I would feel alot better about dealing with the other symptoms~
    But I unfortunately have a so-so Dr. that THINKS darvecet is "great for this kind of pain!" yeah,ok. My script is to take 1 as needed for pain,I take 2 and it dulls the pain ,if that!I know I need something stronger but I'm having a difficult time trying to convince my dr. of that.I believe I need to request to see a pain specialist?? Hopefully i'll have better luck that route~
    I'm really at a loss:( I rate my daily pain at a 8+. A person should NOT have to live like this....and wear a smile! FM is progressive!! I have no doubts~
    I think I'd poke in every now&then if I ever get better!chances are, when i'm better the whole world of FM and CF will be better along with me!! a cure??? aaahhhhhh! to dream~
  11. azcactuslil

    azcactuslil New Member

    Sometimes its hard to articulate. I am not talking about fog. When you live with pain all the time you have to be able to put it somewhere else in your mind in order to function everyday. When people actually want to know what my level pain is or how I am really feeling, I have a hard time putting quantities to it. I spend so much time trying to ignore it so I can work, live, function, whatever...

    My doc has given my vicoden for pain to use as needed. I am worried about getting hooked on it so use it very sparingly. From the stories I have been hearing about pain management I don't think I want to go there. What are other options that give a quality of life without addiction?

  12. j-bearmama

    j-bearmama New Member

    I don't know why but I am feeling MUCH better.
    My fatigue is virtually gone, except that first half hour in the morning.
    I no longer need a nap in the after noon. I am not nodding off at work or as grouchy. and the BEST part is the brain fog is GONE!!!
    My "all over" body pain is GONE!

    My plantar faciitis acts up first thing in the morning, but the rest of the day it's fine. I do still have SOME CTS pain if I'm not careful with my hand, but I also got my first cortisone shot a couple of days before I started feeling better. ( not sure if it's related, I doubt it.)

    I did torque my shoulder the other day and it is still a little sore. but it's not KILLING me. and it is an injury so I do expect some pain from it.

    I am only taking one pamelor at bedtime ( I dont want to be moody ya know), and I do take ONE 400 mg motrin at bed time too. I did have to take an extra motrin the other day for my shoulder, but that was ALL I needed. ( and a little icy/hot).

    I feel like a new person. I have energy. I am alert. I don't sound stupid when I attempt to speak ( brain fog).

    I am not sure if this is some kind of miracle or if it has anything to do with the fact that I have been drinking one "propel water" (gatorade makes it) it is chock full of B vitamins. and it has NO atrificial sweeteners. Just some sucrose. it has a light flavor added and tastes great.(berry and peach are my favorite)
    I have actually been able to start working out again. and I am losing weight because of it.

    I just feel like I got a new lease on life.
    Is this "remission" or permanent? I dont' know.
    But I thank the Lord for the new health and feeling better.

    I don't mean to sound preachy, I know not all of you share my faith. But I can't imagine that I feel better JUST because of some drink. That just doesn't make much sense.

    I do know that much of FM symptoms is to blame on bad nutrition or lack of nutrients. It is surely a factor. But I felt better the very day I started drinking it.coincidence?? I don't know???

    I was helping at scout camp and wanted to stay hydrated, but I hate water. My husband told me to try the propel because it tasted good.
    (one interesting thing happened at camp too... I SWEATED. I have not be ABLE to sweat in over 10 years!!!!!! it's as if I "cooked" the FM out of me maybe.---side note I edited in)

    Now if only it was cheaper... I make sure I drink one a day.
    and I have cut my soda intake to zero! and I only have one cup of coffee a day now.
    Now if I could just quit smoking...

    Wishing you all health and happiness.
    I will be thinking of all of you with each unpainful step, and pray that you too will be able to do it also.

    Maybe we can start a walk a thon ( or as my husband suggested " a hobble a thon" :) for next May's awareness day.
    We could get sponsors and put the money into research.

    I did the march of dimes walk years ago. and there was a TON of money that poured in to help babies.
    So why not for FM/CFS etc also???

    many of us have babies to take care of and WE NEED a CURE!

    Many blessings to all of you!
    [This Message was Edited on 07/21/2003]
  13. I went into remission quite an number of yrs ago, unfortunatly I don't know why and wish it would happen again as it came back with a vengeance this time. This dd is such a weird uncaring disease. It has no feelings whatsoever for anyone!
  14. trasestry

    trasestry New Member

    nancez, and all those that are feeling better,

    i was reading the posts..wondering what do you use for pain relief. I take vicoden es. Usually it helps, but for the past few days, the pain has been terrible. If only I can find pain relief, I think I would feel better.
    I am so glad to hear that some of you are having relief from this, and pray that it continues for you all.
    [This Message was Edited on 07/21/2003]
  15. Mikie

    Mikie Moderator

    Two years ago, I was bedridden a great deal of the time with horrible pain, fatigue and fog.

    I believe that the Guai treatment has reversed a lot of the FMS symptoms. I seldom have to take anything now for pain. Unfortunately, I also suffer from CFIDS and continue to fight the fatigue and cognitive problems. My original Fibro Fog improved almost immediately with the Guai. It took a lot longer for it to help with the pain.

    I am on long-term antibiotic treatment for mycoplasmas and am now also taking Famvir. I take supplements and the colostrum and ImmunPlex whey sold here to help rebuild my immune system.

    The Klonopin has been a huge help in getting quality sleep, and it also helps with sensory overload, tinnitus, and anxiety/panic attacks. I am in the process of cutting down on it as I continue to improve.

    I still get sick sometimes. Right now, I am battling a sinus infection following exposure to Red Tide, mold, and a cold virus. It has left me exhausted.

    My goal is to get to 80 percent of my pre-illness health. I think that is a reasonable target considering that I've been sick for 12 years.

    Love, Mikie
  16. pam_d

    pam_d New Member

    I like that---- "oldish" life!

    I'm trying to go back to some of my "oldish" life; I'm job hunting for the first time in years, because I finally feel some semblance of my "oldish self"-----I don't attribute this to getting a handle on my fibromyalgia, but rather, getting a handle on my underlying factors that were making my fibro much worse. I won't bore you with details, I've written too much about this already, but if you've ever seen any of my old posts on food allergies/leaky gut, you'll know that I feel that my troubles started there; now that I've started to deal with my food issues through diet & probiotics, digestive enzymes & other supps, I'm experiencing way more energy than I used to have, and while my fibro symptoms are definitely not gone, they are much more tolerable for me. I may not be able to eradicate the fibro, but I can try to eliminate the factors that aggravate it, is how I look at it.

    BTW, I have learned so much from others here to work every day & deal with fibro; their posts have really educated me a lot. I'm job hunting, but limiting myself to part-time work, certainly at first anyway, until I see how well I can handle it. But, yes, I'm feeling a little like my "oldish" self & trying to get a piece of that life back!

    I hope you do, too; I think it takes a world of time & detective work & reading/learning everything you can (which this board is excellent for!), when you have fibro or CFS. And there's still so much we don't know!! But I think many of us have SOME perpetuating factor(s) that make fibro tougher for us; the exasperating thing is trying to figure that out so we can at least treat that stuff & maybe see a slight (or more) decrease in our FM symptoms, or the ability to tolerate them better.

    Hugs to you,
  17. Gran9

    Gran9 New Member

    After 3 1/2 years of battling CFS, I can honestly say I am better. It's only been 3 months but I now, at times, actually enjoy life. Before I was struggling just to get thru each day. I know from others experiences that this may just be a grace period and I may fall back into the pit of despair but for now, at least, I'm enjoying every good moment. What has helped??? Hard to say...I practise Aggresive Rest Therapy which simply means never pushing myself beyond endurance (which is not always possible), I take Ambien to help with sleep and I have changed my diet by eliminating all refined sugar and white flour and eating very little red meat. Three years ago I was able to do maybe 20-30% of what I could once do; today I can do maybe 50% and have to have lots of rest during the day. Doesn't sound all that good, I know, but I'll take whatever I can get. Don't lose hope.
  18. mamafurr

    mamafurr New Member

    hey, great letter. please tell me more about this drink? where do you get it? never heard of propel water before. i'm in CA...i thought we had everything here LOL..and pamelor? have to look that up....have you been to the worship board yet? great place to share your faith...(personally i believe that has a great deal to do with things) anyway...
    hope to see you there
  19. j-bearmama

    j-bearmama New Member

    I buy my propel at walmart for $3.50 for a 6 pack. you can get the individual bottles ( it has a few more ounces) for $.98.
    Although prices may be higher in CA.
    It is on the aisle with the bottled water in most stores.

    you can go to the propelwater website. just add the usual "you know what" to the name and you're there. ;)

    My husaband pointed out to me that dehydration is also a major factor in memory and attention.
    So the fact that I am drinking it may also help with me getting enough fluids.

    By the way, Pamelor is the brand name of nortryptoline. It's a mild antidepressant. It mostly helps me not to get grumpy when I'm frustrated.

    I don't think ANYONE wants me to stop taking that. :)

    Hope you all feel better soon!

  20. kar1953

    kar1953 New Member

    This past Nov. through about mid March I was 95% bedridden. I do believe the hi calcium/magnesium supplement I'm taking is the reason I'm doing so much better. I don't know how long it will last.

    I don't lead a fast-paced life like I did before this DD. I was just saying to my husband today that I sure wish I had the get up & go that I did before this happened to me. But - I am thankful that I'm recovering as well as I am.

    If I (like Shirl) can just get this IBS under control again, I'd feel more like my oldish self! Am sooooooo tired of these dang cramps. Even the med my gastro gave me for cramps isn't doing it this time. Guess I'll have to break down & go see him. Been having a bad time of it for almost a month. Ahhhh, the joys of FMS :)

    Take care......Kathi
    [This Message was Edited on 07/22/2003]