Discussion in 'Fibromyalgia Main Forum' started by Dorothy45, Apr 29, 2003.

  1. Dorothy45

    Dorothy45 New Member

    I became rather upset yesterday late afternoon when I read a response to an inquiry regarding the guai protocol. As I was driving home from work, I was saying to myself that this support chat room only made me feel nervous and unaccepted. I have noticed that there is a "click" of people that seem to lack tolerance for some of us who are not as educated regarding fm. I don't have all day to read,chat, and investigate about this disease. By the time I get home the end of the day, I have hardly any energy.
    There is not enough energy left for me to even read sometimes. I was going to eliminate this support circle, simply because of certain indviduals who lack "tolerance". Of course, I thenrealized if I quit group for anwers, Iwouldn't be any different than the ones who get "short" sometimes. I don't want to upset anyone, but I am learning. I obviously am not as educated in the medical field as some others in this group, but I son't mean to be annoying. I will not offer any more input, until I have something which I think is worthwhile. I just wanted to let people know that there are "dummies" like me out there, and please give us a break!!!!!!
  2. MemoryLane

    MemoryLane Member

    We were all new once and there are more and more new people everyday. We are not at our best at times and sometimes we do get a little "sassy". We go weeks at a time with peace and harmony and then all of a sudden we have chaos.

    I am sorry for your harmful "first impressions" - please stay with us and bear with us - we need you, too.

    And PLEASE don't be afraid to voice an opinion or ask a question. Just ignore the rude posts - those folks are having a bad day and our quality of life is always on the jagged edge of a blade.

  3. kadywill

    kadywill New Member

    None of us know everything and we are all learning. I admit that some people do seem to come across as experts and I sometimes am intimidated by them when I get "short" answers, but I remember when I was new here and I, apparently, was asking questions that were silly to the oldtimers. Someone posted saying that us newbies should just do a "message search" instead of asking all these boring questions over and over again. I feel that it's VERY time consuming to read all the messages on a given subject via message search in hopes of finding the answer to my silly question. I nearly stopped posting right then and there. But, I realized that I may just have some info one day that could actually help someone and I can ALWAYS benefit from any knowledge I can gather, so I stayed. The support is the main reason I'm here. I've read a lot about our DD and I need comfort and a shoulder to cry on. I feel that if the "smart" people don't like our questions, then they can skip our post and read the next one, because it is imperative that we gain enough knowledge to make informed decisions regarding our treatments and meds. I want to be a part of my healthcare team. So, my long-winded point is this: STAY here and don't let these impatient people get to you. We all have a right to be here and I, for one, don't like to debate and squabble about issues, so if I choose to disagree about something, I GENERALLY keep it to myself. You work outside the home and don't spend the day reading and researching~~~be ever-so-proud that you're still working...and just drop in and read/post all you can. YOU ARE WELCOME HERE just as you are and you don't have to prove a thing! Believe me, you're as intelligent as anyone else here!
  4. stillafreemind

    stillafreemind New Member

    I kinda can relate to what you are saying. I am lucky if anyone responds to I do appreciate it when someone does.

    I cannot relate to the med threads, as I do not take them. I try to respond to those things which I have found success in..but I am not educated in the med field..but I have had this junk geez..for about 40 years now. Praise to God..I must be doing something right!?!

    You hang in not apologize, do not quit coming here. Just be who you are..thank God we are all different.

    Have a great day Dorothy...Sherry
  5. MemoryLane

    MemoryLane Member

    Besides the older posts are removed and don't stay around forever, so we have lost some valuable information that needs to be questioned and reposted occasionally.

  6. ForeverFlaring

    ForeverFlaring New Member

    I am so sorry that you were treated wrongly. I usually don;t answer any of the med questions as I havent had alot of experience with them. Actually I dont answer alot fo questions. I ask alot though! Just remember we are all in the same boat together, and if yuo feel upset, let us know. The only way things can be reconciled is if they are verbalized!
  7. Mikie

    Mikie Moderator

    I just realized that when you asked a question, I didn't completely answer it. Also, I was trying to answer about three people in one post. It would have been better for me to post individually to each one.

    I was getting a little impatient with one of the people I was answering and it may have spilt over in my response to you. Like everyone else here, I just get tired sometimes. I apologize if I said anything to offend you. I do know that another person on that thread has been in a lot of pain lately so she may not be herself right now either.

    You asked if I had problems with the Guai in the beginning. I did not really. I cycled at 600 mgs. just like the book says. It did take three times of reading it before I "got it," though. There's a lot to digest in terms of the theory, the hypoglycemic diet, eliminating the sales, and understanding how to tweak the dose.

    After I figured I had a good handle on the info, I went through all my supplements and personal-care items and eliminated those with sals. This is probably the biggest time consumer in the whole process and can be a little intimidating. The book does list 1,000 of the most common botanicals which are used in products. Using the sal-free websites is good, but manufacturers change their formulas so often that you still have to check every time you buy something new.

    I have found through trial and error that I can tolerate some sals before the Guai is blocked. It is better, though, to completely eliminate them in the beginning. Dr. St. Amand says it's less important in soaps and shampoos which are well rinsed off than in products which sit on the skin, like lotions.

    Over time, I have increased my dose to 2400 mgs in order to speed things up. I flared each time I increased. In the two years, I figure and feel as though I am better than 3/4 reversed in terms of FMS symptoms. Today, my doc couldn't even find 11 of the 18 tender points.

    I wish you luck in trying the Guai treatment and, despite your unfortunate experience, there are lots of nice people here who will answer your questions.

    Love, Mikie
  8. Dorothy45

    Dorothy45 New Member

    Thank you all for your kind responses. I get irritated often now too, because I am extremely tired and not quite up to par. I think the single most irritating problem presently is the fibro fog. Thanks again!!!!!!
  9. seaview

    seaview New Member

    I only manage to get on this board every couple of days or so. I am sorry you have felt hurt,rejected,uncared for or whatever you want to call it. I know all to well how it felt when I first came to this board. I had a ton of questions and was so overwhelmed. One of the moderators at that time was a real get with it kind of person. Although I do understand her personality and it did need to be said as far as taking control of your own health I remember being afraid to read her posts sometimes. They were so direct and I was such a bundle of emotions. I have noticed in the last month or so that there are sssoooooo many new names when I check in. I was just thinking to myself how it would be really nice to do a "here's some info for first timers thread"....I agree that going through the old threads is so hard and because they occasionally trash can the old ones we are missing out on alot of info. Some here also have more time, knowledge, and so forth to really do the research. I am so exhausted by the time I check in that I can hardly type many times. You keep on asking questions....even if you dont get answers ask again the next day. I have found that some days are busier or slower than others or maybe the right people to answer you are not on that day. Please try and not take it personally. Alot of problems also stem from the fact that we can not hear the others voice which definately can change how something is meant! I know that from personal experience. I have not been on so I don't know what happened to you but I encourage you to continue to use this site as a resource and support. There are some great, tenderhearted people who will answer and care about everyone....esp. the new ones. It wasn't that long ago that I was just trying to pronounce FM :)...There are many different treatments,meds,opinions,and such that we all can glean from. I hope you can see the big picture here with this message board and appreciate it for what it is and ignore what it isn't. Remember that alot of people come here when their pain is the worst because no one else will listen and care. Sometimes what we get to read(hear) is them on their bad days and not on their good days because on those days they are busy doing what they cant on the bad days....crazy but true. So my dear, take what you need....encourage when you can, ask what you need to know and remember that we are all on this road less travelled together.Some of us are trying to get off the road,others are trying to figure out how they got on ,and most of us are just trying to embrace the road with all its potholes and tricky turns and live our lives the best and most fulfilling that we can........Blessings....Kathleen
  10. Mikie

    Mikie Moderator

    Great post. I really like the "Road Less Traveled" part. If we can just keep in mind that we are all on the same road, it will help. I will try to keep that in mind. Thanks.

    Love, Mikie
  11. Mikie

    Mikie Moderator

    Something I forgot to mention: The Fibro Fog almost immediately lifted when I started taking the Guai. I still suffer from cognitive problems, like memory loss, with my CFIDS, but the Guai helped the fog a lot.

    Love, Mikie