Cured, In Remission, Improved, Back to Normal

Discussion in 'Fibromyalgia Main Forum' started by Lolalee, Oct 25, 2006.

  1. Lolalee

    Lolalee New Member

    YIKES!!! Have you all read ProHealth's thread entitled "What Worked For Me"? No wonder so many doctors are at a loss when it comes to helping FMS and CFIDS patients. I was amazed at the varied and countless ways that members have been helped. There are so many different protocols listed that it's overwhelming to try to figure out what one should or shouldn't try.

    I've come to this conclusion...we are each individuals and each may have a set of underlying factors that can affect the outcome of a specific protocol we choose to try. Also, the people who have improved didn't improve overnight. For the most part, I think what it comes down to is trial and error or success, hard work, patience, perseverance, optimism, hope and faith and maybe most importantly, we must make getting well the number one priority in our lives.

    If I've learned anything from reading these posts, it's that no one can tell you what will help you...they can only tell you what helped them. Ultimately, we must choose for ourselves which path we will follow.

    So many paths......where to begin???? Baby steps, my friends, baby steps.


    [This Message was Edited on 10/25/2006]
  2. mrdad

    mrdad New Member

    Ya know Lola, you are "right on". Where DO we begin?
    Well put. Not to be pessimistic, yet it is somewhat the
    proverbial needle in the haystack isn't it? I don't
    know where to start myself. Hope you had a good day!

    "See" ya on the Porch,
  3. Forebearance

    Forebearance Member

    That's a very good point, lolalee!

    All those different theories and protocols can be overwhelming.

    My theory is that CFIDS exacerbates whatever weaknesses exist in a person's body.

    So that's why different things help different people, because we all have different inherent vulnerabilities that can be exposed when our bodies are stressed.

    For example, if you have any susceptibility to hypothyroidism, I believe that CFIDS will bring it out, and perhaps at an earlier age than you normally might have noticed it.

    Another example is that osteoporosis runs in my family, and I discovered that taking boatloads of calcium helps me a lot. I think it's how my body works.

    Just think, when we get well we will know so much about ourselves that we will be healthier than before we got sick!

  4. Mikie

    Mikie Moderator

    My own progress has been agonizingly slow, but still, it's progress. Every treatment I have used is something I heard about here and then researched on my own. For newcomers, I usually suggest they start with their worst symptom and try to get relief and then to move on to the second worst symptom. Once one has some relief, one can go on to start researching some of the more cutting-edge comprehensive treatments and clinics.

    I think it is vitally important to understand that in most cases, there is no magic bullet (I wish there were). Most of us who have improved over the course of some time have used a myriad of meds and treatments which work well together to produce progress. We take those baby steps and build them into our own regimen which is highly individualized. It is a long process of trial and error.

    It sounds to me as though you've learned a lot. It will serve you well as you search for your own treatments. I never stop looking for new things which might help me. Good luck to you.

    Love, Mikie
  5. Aeronsmom

    Aeronsmom New Member

    What a lovely post. It is really hard to try and be optimistic when we are in sooooo much pain, and getting better is the #1 priority in my life, and as Lena said
    that maybe one day like M.S. (which is what I have) cfs/fm will
    eventually be managed with medications to halt the progression and some symptoms this this DD. until then.....
    we continue to go on living each day with the help, love and support from our mates and our family here.

    Love to all, Ann
    [This Message was Edited on 10/26/2006]
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    [This Message was Edited on 10/26/2006]
  6. Slayadragon

    Slayadragon New Member

    Actually, I think the comments in those posts could be boiled down to a half-dozen overall categories (e.g. "address nutritional deficiencies" or "remove stress"). A dozen at most. And all of these have been well-discussed in the basic books on the topics....Teitelbaum's and others.

    This is not an illness with an obvious single answer. You can't expect to find one. It's a puzzle that requires every piece to be in place before it's "finished" and you feel really well again.

    I think all the people in that thread have answers that may apply to the majority of us, or at least they may if tweaked in the right way. It's not that every person is different and so no one thing applies to everyone. It's that this disease involves many different components, and so no one thing is going to fix anyone.

    All the people here who have gotten even a little bit better due to something active that they did hold a piece of that puzzle. Our challenge is to put them all together in a way that makes sense for us.

    Is that hard? Damned right. Is the possibility of getting at least somewhat better worth the effort? I can't say for others. I just know that it is for me.

    Which doesn't mean that there aren't a lot of days that I don't feel like giving up on the whole thing, of course....
  7. Lolalee

    Lolalee New Member

    I want to thank all of you..wish I had the energy to address each response individually. This thread has turned out to be a wonderful blessing to me. You are all so wise and so strong...even if you don't think you are, believe me, you are strong...we all are. Maybe we don't feel that way everyday, but that's what's great about this message board. When one of us needs a lift there are many who step forward with the perfect message that helps us keep on going.

    I am proud to be a part of such a supportive, determined and compassionate group of people. Thanks, my friends. God bless you all.

  8. Marta608

    Marta608 Member

    Yes, Lola, baby steps. Begin and begin again. Sometimes I think the illness just gets fed up with all our efforts to get rid of it and simply leaves, or so it seems with some people who have wonderful remissions.

    I have a friend who had to give up her practice as an attorney because of CFS. She and I agreed often on symptoms and we both struggled. We were both sick enough that we eventually lost touch. She met a wonderful guy, got married and, I hear, is doing beautifully. Go figure.

    [This Message was Edited on 10/26/2006]
  9. laura81655

    laura81655 New Member

    I've noticed what has helped me the most is taking the low dose, microdose 10mg. hydrocortisone that I get from the Compounding Pharmacy. It is by far not a "Cure", sorry, there isn't one yet. What I have noticed after being on it almost a year now is that I seem to have less pain, depression, ability to exercise. When I do aggravate or injury myself ( I seem to injure very easily )I recover so much faster. Before, it took forever for any little sprain to go away, or, it didn't go away.

    I know that Dr. Teitlebaum says this low dose can help a certain sub-set of people. Just so thankful to have some relief after many many years of this!

  10. 1sweetie

    1sweetie New Member

    I was so glad to see this post. It is very well written and touched on a subject that needed to be addressed.

    There is not one protocol for everyone and what works for one makes another sick.

    We are all individuals with different medical, physical, and emotional needs.

    When I first joined the board, I would try nearly everything that any one suggested because I heard the word cured. Although I have learned so much and found most of the information useful, I finally stopped feeling like a failure because I am me. I am different...we all are. Lots of the supplements just like lots of the prescriptions made me sick. I have to be realistic. I feel better without taking most of those suggested...that is me.

    I am glad to say I am now improved...for which I am so grateful. Improved to me is definitely not well.

    There are a couple of great post by a poster by the screen name of DorothyVivian and she posted on a thread started by Prickles. I've asked her if she would start a thread with these post. Her post are wonderfully written and hold so much truth in them that I wish everyone would read them but they are hidden in a thread about why there are so many new post to the board recently. If you can find them, please read them. I think you will enjoy them also. I will bump that thread as I post this.

    Thanks again for a great thread.

  11. Lendy5

    Lendy5 New Member

    We are all different and what may work for one person may or may not work for another. Also what may work for me today may or may not work for me tomorrow I have found out that.

    I think sharing what we all do to help is great and keeping an open mind and being positive is the most important thing.

    I am happy to see anyone say they are improving.

    Hope Springs Eternal
  12. I agree with you, I too was diagnosed with fibro around 30 yrs ago and then went into remission and felt healthy for a long time and then about 12 yrs ago BAMM without warning it came back and `10 times worse than it was. So yes you can go into remission for periods of time. I am still waiting and wishing for it to happen again.
  13. 1sweetie

    1sweetie New Member

  14. Granniluvsu

    Granniluvsu Well-Known Member


    You are absolutely right and alot of what the other posters have said too. There are many ways of TRYING to cure or help oneself and we are all SO different.

    One must have alot of patience and what is great and MIGHT work for one may not work at all for another. That also includes the drugs may of us are taking, and any other therapies, etc. etc. that we are all trying.

    We all need to remember this when trying things that others have said that they feel might have helped or CURED them !!

    You said it all very well !

    Warm hugs and blessings,

    That Granni (Marilyn)
  15. momXtwo

    momXtwo New Member

    I'm a novice here, so please forgive me this once. I didn't scroll down and notice the spot for the reply.

    Lolalee, thank you for this thread. It's contents and replies were so helpful to me. I've got FM, CFIDS, and hypothyroidism, but I think I've been in some denial. I haven't been arming myself with knowledge. I haven't taken the time that I could have by coming into this incredibly inviting and welcoming place and learning from those who have precisely what I have!

    After I read this thread, I could have thumped my head with the palm of my hand. I'm going to make it a priority from now on to get on here whenever I possibly can. I tend to hole up from everyone and everything and just avoid, deny that I have this "thing", and expect that tomorrow it will simply disappear.

    I have a lot to learn. You (collectively) have a lot of information and hope to offer. Your post hit the nail on the head, and I thank you for it and the people that were inspired to reply to it.

  16. KelB

    KelB New Member

    I've just climbed out of a minor crash that lasted a couple of months. Nothing like CFS in its full-blown form, as I could still work full-time. But I was coming home and sleeping 12 hours, then spending most of the weekend in bed. I'd started to ask about going part-time again.

    I stepped back and took a look at how I was doing things. I'd reduced from 4 rests a day to 3, thinking that this was a step forward. I was fine for a month, then the slide started. I went back to 4 rests a day and started to pay more attention to regular night-time sleep hours. Within a week, I was back to what passes for normal these days.

    So here's my tip if you find yourself in a crash or headed there. If you find yourself slipping when you've previously been OK, do a bit of a life audit. If you've found something that worked for you in the past, think about whether you've let it slide a bit and pay more attention to it. Or go back and try the same strategy again.
  17. bunnyfluff

    bunnyfluff Member

    Total, glorious, remission.

    Now, it's back with a vengence, worse than before. I'm not sure there is any rhyme or reason to it. Enjoy it while it lasts, when it happens. I thanks God for every gift of a pain free day I get. They are far and few between.

    Today is not one of them.

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