Guai Ladies, Where are you?

Discussion in 'Fibromyalgia Main Forum' started by janieb, May 29, 2006.

  1. janieb

    janieb New Member

    Hello, friends,

    It's been a week today. One week! As for changes -
    I do think my appetite might be a little better, but then, everyone is watching to make sure I eat.

    I don't see any difference in the pain, but I often feel my pain just isn't nearly as bad as many people on the site. I know people feel pain differently and have been told often that I have a high tolerance for pain.

    Did tell my doctor she was going to have to up the Tramadol, since it wasn't going to last for three months. My husband thinks I should take it as soon as the pain starts and I prefer to wait to find out if I can handle it without meds. Get the feeling the doctor thinks I'm taking too many meds.

    The unusual thing going on is that I'm finding myself in a constant panic attack. Something terrible is going to happen, but I don't know what it is. Many bad things are going on now, but it's going to be so much worse than anything so far. Have you ever heard of this? I feel like I'm losing my little mind. Do I need to go in and see my doctor? Hate running to all theses appointments and I'm really happier at home.

    What do you think?

    JanieB
  2. Mikie

    Mikie Moderator

    What you are experiencing is anxiety. The important thing is to try to identify the source. It can be mental and/or physical. Do you have other symptoms which might be caused by a slight state of seizure in addition to the anxiety, such as sensitivity to light, noise, touch, or smell; muscle spasms or tics; inability to fall asleep or stay asleep; ringing in the ears; or racing brain? All these things, in addition to the anxiety, can be caused by slight seizure activity. Neurontin or Klonopin can help with that but you should be aware of the side effects if you and your doc decide to medicate. There are other meds for anxiety too. Some here get good results with Xanax, which is a cousing to Klonopin.

    Cognitive behavioral therapy can be a great help for people who catastrophize or have other behavior which increases anxiety. Therapy, in general, may help but if the anxiety is physiological, meds may be the only way to get relief. Learning how to meditate and induce relaxing brain waves can help as well.

    I tried everything and finally decided it was time for the Klonopin. It has been a God send for me.

    Love, Mikie
  3. Dee50

    Dee50 New Member

    Good morning Ladies,
    JanieB I deal with many of the problems Mikie is talking about that Klonopin helps but right now I'm dealing with getting my pain level down so I can move this old body around and do yard work ect...LOL. I've started using Tramadol and Skelaxin. They are helping. I'm thinking hard about adding Klonopin when I can afford it. I got my hot tub up and running and I know that will help with all the stiffness.
    JanieB hope you are feeling better soon. I hate panic attacks they are scary-sure feels like it's your heart!
    Take care,
    Dee50
    started Guai 3/8/06
  4. bigmh

    bigmh New Member

    Hello Guai Gurus...it's good to hear from all of you.

    Janie...wow, I can sure empathize with your anxiety attacks. I had them for the first time in January when I weaned myself off of Cymbalta too fast. I didn't know what they were for a few days and was just miserable. As Mikie said, I used Xanax for about a month (as needed) and it was a god-send. I hope that your doctor can help you with this.

    Dee...I hope that you can get the pain under control. That is my biggest problem, too. I've been on a 12-day course of prednisone, and that has eliminated my joint pain (whooppee!!), but the muscle pain is still there. I go to the doctor tomorrow, so we'll see what he has to say. I am spending a little time most days in the bath tub as that really helps (like your hot tub....so relaxing).

    Mikie...I saw your other post about jammies at Wal-Mart, and I'm going to look them up. I'm glad to hear that you are feeling a little better. It is a slow process, huh? It sure has taught me a lot about patience.

    Well, I hope that you all have a great day. My daughter is going back to college today (to Nashville). I'm sad as we have had the best 2 weeks together! I've already got reservations to see her in July, though, so that makes leaving a little easier. I'm thankful, too, for cell phones and computers. I'm just praying that I'll feel better by July. Oh well, enough of me!

    Love and blessings to you all, Ann

  5. janieb

    janieb New Member

    Perhaps I should have told you that I take Xanax for sleep and have for years. It seems to be the only thing that works. Also, perhaps I should not have said panic attack, because my heart doesn't race, etc. It's just this feeling of dread. Feeling that something awful is going to happen over which I have no control and therefore, being of an organizational bent, I can't perpare for it.

    Yesterday, a male cousin, called to "chew me out" for the way my parent's graves were decorated. This isn't the first time he's done this. I must remember he's an alcoholic, and lives all alone. Tried to reason with him, but he finally hung up on me. Later on, his sister called to say she had received the same call from him. Then I felt better about that, but it devestated me and I cried a long time. My husband was angry with him and just kept repeating that he is an active alcoholic and that's the way they act.

    I know I'm ramblilng, but you need to know the old me better.

    Up until almost 3 years ago, I was a business official for a school district and although I fought the fibro, I was very organized and did so many more things than I'm able to now. Just can't believe this horrible feeling of dread. My husband has a large family and there is one major problem with a brother-in-law right now, plus the usual health problems people our age have. I love them all and they've been fantastic to me, but is it possible that I now have too much time to dwell on these things?

    I did call my doctor when I felt I couldn't continue another day and she prescribed a very small dose of the slow release xanax for the panic. It seems to work well, but, do I want to be dependent on that, too? You had better believe I took one of them yesterday after the phone call.

    I think you all know that I go to the fitness center three times a week and try to do the exercises prescribed. Found it wasn't so bad.

    Fact is, I hardly recognize myself, emotionally. When I first had fibro (15 years ago) they diagnosed me as depressed. Of course, I was. The pain was unbearable. I had my mother(alzheimers) and a one-year old granddaughter living with us and my father in a nursing home. I can't say the anti-depressants helped me much. The Tramadol does for pain, but that was after many doctors and trial medications.

    If you have any questions that would help you offer advice; just ask.

    Appreciate you gals more than I can tell you.

    Thanks.

    janieb
  6. janieb

    janieb New Member

    Should I increase the dosage?

    Janieb
  7. Mikie

    Mikie Moderator

    If it were me, I would increase it slightly for a week and see what happens. You could cut a 400 mgs. tablet in half and increase your dose to 600 mgs. twice a day. Good luck.

    Love, Mikie
  8. Smiffy

    Smiffy Member

    Yopu're only on 400mg a day, aren't you? This is a very low dose - the majority of people reverse cycle on 1200 mg. I don't think it would do any harm to add another half tablet at lunch time for a few days, & then increase to 800mg.

    For expert advice, you could post questions on theGuai Group board, if you can get onto it. My server currently keeps throwing me off the American one.

    Best wishes everyone!
  9. Jude

    Jude New Member

    Dear JanieB

    It sounds like there may be a possibility that you are hypoglycemic. It is difficult to catch hypoclycemia on a medical test. Have you tried the diet? It will cost you nothing to try and may help your anxiety.

    I would suggest that you recheck your products for blockers. Are you using a stool softener within two hours of taking your guai? I'm also confused about your current dosage.

    Jude
  10. janieb

    janieb New Member

    I'm almost positive I'm not hypoglycemic? My niece is and so is my sister-in-law, and I exhibit none of the signs they have. My diet seems to have nothing to do with how I'm feeling.

    I'm currently on 800 mg of guai; one 400 mg in the morning and another 400 at night. I think I will go with the advice to add another 1/2 tablet and see what happens.

    It seems that perhaps, if things don't change soon, I should make another appointment with the fibro specialist. There's been no question that I have some depression, but I've always thought that was from constantly fighting the pain and my limitations. This is different - it's just this big, black cloud.

    Thanks for all the information.

    janieb
  11. Mikie

    Mikie Moderator

    Take one more look at all your products just in case there is a sal. Don't go outside barefoot in the grass and don't garden without gloves. Sometimes, it's the simplest things which can block the Guai. If adding half a tablet to each dose doesn't work, you might consider the low-carb diet. It won't hurt; it's not a no-carb diet. Hypoglycemia doesn't always produce symptoms. Good luck.

    BTW, try taking your calcium with your mid-day meal. Don't take any magnesium with it nor drink any soda pop. Calcium with a meal can help pull the phosphate debris out of the soft tissue, just like the Guai does. It is a way to boost the treatment.

    Love, Mikie
  12. janieb

    janieb New Member

    I don't take calcium pill form, but drink it in milk. Will stay away from it at noon. Don't go outside barefoot, because of the hyperflexibility, I have corns on each joint in my feet, and not an outdoor person, anyway.

    Feeling much better today and did my trip to the fitness center. Even though I hate getting up that early, I do feel it makes my day better. Am sleeping better than I have in years (knock on wood).

    Of course, will check all products again. Have done more re-reading of the book, and, if necessary, will go back into the specialist, or call her nurse. They're great about taking the calls and getting back to you.

    Company all went home and enjoyed them immensely. My hubby did all the cooking and there was practically no cleanup.

    Did the guai work for you like the book described it? Did go the the fast acting 600 mg morning and night, starting yesterday. Will keep all of you posted. If you have questions about my history, ask away.

    Blessings to all,

    Mary
  13. Smiffy

    Smiffy Member

    The advice on the UK board has been that we can reverse cycle depression symptoms just like all of our other FMS/CFS symptoms.I've had one nasty bout so far, & it's very difficult to cope with.

    I'm sorry if this is what's happening to you with your first dose JanieB (of course, I don't know if it is). Keep reminding yourself that it will pass. My first reverse cycle was non-stop eyelid twitching for weeks. What a strange illness we have.

    My new edition of WYDMNTYAF arrived a few days ago. Today I managed a little gardening, which is brilliant progress for me.
  14. Mikie

    Mikie Moderator

    Janie, I'm sorry if I didn't make myself clear. You can drink your milk with your middle-of-the-day meal. You just can't take magnesium with it or the magnesium will bind with the calcium and it will not pull the phosphates out of the tissues. You want the calcium to bind with the phosphate and not the magnesium. Soda contains phosphates and that is why it should not be taken with the calcium. On the other side of the coin, if you want the magnesium to repair muscle tears, you don't want to take it with calcium or the magnesium isn't as available to help the muscles. Quite a few people take their minerals together.

    I started out with 300 mgs. of the LA Guai and progressed just as the book predicted with cycling. As time went on, I wanted to speed things up and kept increasing the dose until I was at 2400 mgs/day. I now take 400 mgs. of the FA Guai twice a day for maintenance as I'm about 90 percent reversed over a four-year period. My Fibro Fog almost immediately went away which was an unexpected bonus. I still have some cognitive problems but not the thick pea soup fog I had before the Guai.

    Smiffy, I'm glad you are able to get out in the garden. I miss gardening living in a condo. I do have some things in pots but it's not the same thing.

    Good luck to everyone here. It's a long road on the Guai treatment but had I not taken that first step four years ago, I wouldn't be where I am with my FMS. I can't miss more than a couple of doses or my body lets me know in no uncertain terms that I'm not cured. If I injure myself, I can have pretty bad Fibro pain too. Still, the Guai has reversed enough so that I would consider myself well if it were not for my CFIDS. The CFIDS is a real challenge to treat but at least, the Guai has allowed me to concentrate on the CFIDS and I'm making progress.

    Love, Mikie
  15. janieb

    janieb New Member

    Beginning to realize now that I really didn't give you much information.

    Today I have lots of things I need to take care of, since the strawberries will start soon and I take care of the paperwork. That means I have to make this short.

    Next time I'll try to be more specific since I'm afraid I didn't give you the information I should have.

    Have gone to 1 1/2 tablets of FA Guai twice a day. Not noticing anything unusual.

    Will once again go through all my products.

    janieb
  16. Smiffy

    Smiffy Member

    I've been taking Prelief tablets to alkalise my food Mikie, as I have really bad IC. They contain both calcium & magnesium. Should I stop taking them & try to find some calcium-on-it's-own tablets?
  17. Mikie

    Mikie Moderator

    It all depends on what one is trying to accomplish. A lot of docs recommend taking the calcium and magnesium together. If one wants the calcium to help bind to the phosphates in the soft tissue, one would want to take it by itself. If one wants the magnesium to repair muscle injury, one would want to take the magnesium by itself. That is why the directions on the ZMA say not to take it with calcium.

    If one is not trying to accomplish either of the above, taking them together is normal.

    Love, Mikie
  18. Dee50

    Dee50 New Member

    JanieB, I just started using Tramadol again, and Skelaxin with it for pain and muscle spasms in my lower back. I'm finding that the 200 dose of Tramadol 50 mg x 4 daily is very helpful with my overall body pain but it's not helping with my lower back pain. I'm not sure about the Skelaxin yet I'm using it at 400 dose with my Tramadol a couple of times a day. I'm using my tens unit on my back too and the hot tub but it still is not happy! It's nice not to have all the other areas of my body hurting, neck, shoulders,bottom of feet, ankles, knees ect..

    The guai is hitting so many parts of my body at once!lol I've heard thats normal in the first year or so when you start using guai. This is a hard protocol for me BUT I'm glad I started it. The Tramadol is a nice break from all the pain I'm usually dealing with. I'm even doing some yard work, and I'm not laying in bed much so I most be doing something right:)
    Take care,
    Dee50
    1200 Marina Del Rey Guai started 3/8/2006[This Message was Edited on 06/02/2006]
  19. Smiffy

    Smiffy Member

    Thanks Mikie!

    Glad the Tramadol is helping you, Dee. Did you have to get used to it? It seemed to suck out all my remaining energy (not that there was much to start with) when I tried it.

  20. janieb

    janieb New Member

    and things seem pretty normal. Using 600 FA morning and night. One strange thing happened today. My legs and feet feel like something is biting me. This happened once before and I assumed our dog had fleas. I spent weeks treating the dog and house, also, a fortune. Think I nearly killed the poor little dog. No one thought there was anything wrong. Finally the feeling and rash went away, so I chalked it up to nerves. Today is much like that.

    Did go for my workout this morning, then to Eau Claire for a doctor appointment, lunch out with my niece, and grocery shopping.

    Left home at 7 a.m. and didn't get back until about 5 p.m. For me that's an astounding day. I'm tired, but not wiped out.

    Shall I increase my guai again at the end of the week?

    Bless all of you for your help.

    janieb