Gothbubbles: are you here? Worried about you

Discussion in 'Fibromyalgia Main Forum' started by shar6710, Nov 22, 2006.

  1. shar6710

    shar6710 New Member

    I hope you are lurking and just haven't had the energy to post.

    Please let us know if you are okay.

    Shar

  2. Shannonsparkles

    Shannonsparkles New Member

    ... because I've been praying for you every day. Please come back soon. I need help writing Story 1 on the chit chat board, and I'd love to have you in it. :) Fibro board misses you.

    Please discard this advice if it's dumb (I get this kind of stuff from certain relatives all the time - you know which one I mean - wink) but I've heard that magnesium's pretty good for muscle spasms. Up to you. The docs will come up with something.

    Here's hoping that you're up to writing again soon. The icon I picked is someone with myoclonic spasms playing the guitar - it was either that or give you the little waving dude that keeps hitting himself in the head. lol I know you've got a good sense of humor.

    ((take care, gothy)) Shannon :)
  3. mezombie

    mezombie Member

    Where are you? Are you OK? I really feel for you and responded to your most recent thread. I'm worried about the despair you seemed to be in and, like others, just want to hear a peep from you.

    Hugs,
    Zombie[This Message was Edited on 11/27/2006]
  4. Gothbubbles

    Gothbubbles New Member

    I've been on 1000 mg of mag for months now ):

    I've been just so sick, i can't even work at my part time job now. I wrote an update in my "lock me in a padded room" post. I'm sorry its not good news and I'm having trobule not losing hope.

    I won't kill myself so don't worry. I have a lot of people who care about me (i'm scaring the bezeejum out of them right now) who I couldnt' stand hurting like that but lets just say i'm going through a lot for their sake righ tnow.

    I'm flattered that you guys noticed my ab secne. I am sorry if you're worried please i don't want to worry any of you! SOme of you are sicker than me and don't have my kind of friends so I really have no right to complain. SOmetimes i just hurt.

    I hopped on tonight becayuz i' feeling desperate and scaring the crap out of my boyfriuend too much he can't even talk to me now. It's breaking his heart to see me like this. I wish i could just hide it from him so he wouldn't be sad.

    I love him but he loves me too so he gets all messed up when he sees me fall or convulse or soemthing. or with my cough now he gets really upset. I'm on controlled drugs for the first time inmy life and yes, I'm really scared too.

    I hate my body so much.
    I'm so sorry i worry you. I just want others to be happy. i'm so mesesd up.
  5. shar6710

    shar6710 New Member

    I am so glad you posted because I have been very worried. Of course you have nothing to apologize for.

    I had a very bad cough like you early on in my illness. It might not have been the same thing but anytime I moved in bed I would have horrible coughing fits where I couldn't catch my breath. It is normal to be scared.

    I found that I breathed better propped up on pillows in bed or in the recliner. I even had to sleep that way. I don't know if that would help you or not.

    I'm glad you are getting some medical help and I hope it gives you some relief quickly. I wished you lived nearby because right noww I'm well enough to bring you a hot meal now and then. I'm not usually very maternal but it worried me that you weren't eating well:)

    Please keep us posted on your condition we are all thinking of you. Maybe one of your friends could come on the MB now and then to give us an update until you are better?

    Please take care of yourself and rest.

    Shar

  6. Gothbubbles

    Gothbubbles New Member

    I feel like such a wuss because I'm a CFS veteran (6 1/2 years and counting) and this stupid crap still gets me down.

    They're (my friends) trying to feed me but I haven't had much of an appetite. I guess I lost 3 pounds which my regular doctor's regular nurse noticed somehow between this visit and the last and insisted on weighing me (wtc 3 pounds?). I'm not fat or anything, but like most women I hate to be weighed, heh heh. 3 pounds really is nothing. I could pee and lose three pounds ^_^

    I won't be able to return to work for probably several weeks so I'm gonna be pretty strapped for cash.

    The narcotics I'm on are taking a lot out of me. I have to retype each of these sentences about 10 times, I fall a lot, i'm spaced out, and I fall asleep everywhere. My mom is trying to get me to see new docs, and since I've got nothing but time I'm going to.

    It's just been really bad timing, all in the span of one month I've gained a horrific tracheaitis (or perhaps whooping cough, still waiting on the tests), and completely debilitating myclonis.

    And my boyfriend spent $500+ to visit me this week for thanksgiving and I've been scaring him to death (talk about timing!). I cried for hours last night feeling sorry for myself hiding in the bathroom so he wouldn't hear me so he could have some peace. I just wish I had something, you know, like a dream to pursue. Hope. I'm trying! I am usually such an optimist.

    I'll try to remember to hop on here so you guys don't worry but for the next few weeks I'm goign to be suffering a lot. I know you ALL know suffering, and I wish for you all to not worry about me and just make sure you take good care of you. You're doing enough by just listening to me, and letting me vent this stuff and get it out of my system.

    Which means heavier drugs than I've ever had before, including a narcotic cough suppressent and an inhalor. These drugs really affect me. some of the side effects I can't mention on the boards since they're very personal.

    I'd harrass my friends to keep you guys posted but they have lives ): and I already ask too much of them. Just know I will never take my own life, and I won't starve to death. Hey, maybe I'll evn drop a dress size :)

    If i get lonely though, I'm sure you folks will hear about it.
  7. elliespad

    elliespad Member

    Sorry to hear you're doing so rotten. I'm sitting here thinking what I would do if I devloped the myoclonis or my kids. I might suspect something along the lines of pre-seizure activity? I wonder if GABA and L-Theanine would help. These are both very cheap amino acids available in any health food store. (Under $10) L-Theanine is also found in Green Tea. There is also a Tea called CALM by the brand TAZO. It has very calming herbs in it. They calm the nervous system. It is available at Starbucks (expensive, priced by the tea bag) and I have seen them by the box at SuperWalmart.

    I am going to call a compounding Pharmacist later when they open and run this GABA and L-Theanine theory by him. Compounding Pharmacists are a wealth of knowledge for drug and non-drug approaches to health problems.

    Have said a prayer for you and I believe in miracles.
  8. smiffy79

    smiffy79 New Member

    thats cool. bubbles i hope they bring relief
  9. shar6710

    shar6710 New Member

    Thanks for the update.

    You'll be in my thoughts.

    Shar
  10. elliespad

    elliespad Member

    I just called the Compounding Pharmacist nearest me. She is going to do some research and call me back:) . Will let you know when I hear. I LOVE these Pharmacist, ALWAYS willing to help. They even do consultations. Can go in with your health problems, sit down in a booth and go over your history, and they make recommendations, dietary changes, allergy, supplements, adrenal protocols, lots of stuff. They are truely trying to help.
    _________________________________________________
    Okay, she called me back. The only published things she was finding (for non-drug treatments)were to use Magnesium, Vit. E, Calcium ,Iron and 5HTP. The Magnesium you are already doing. I asked specifically about using GABA and L-Theanine and she said she thought too that the GABA might help. Says they use GABA in place of Valium for many situations, since it acts on the same (GABA) receptors. She didn't necessarily think that Myoclonus was related to preseizure activity, but could be to weak muscles. But I wonder. I do know if you use 5-HTP, you must take it with B-6.

    I viewed your video, and the jerks look a bit like Parkinson jerks too. In which case, supplements that boost dopamine, might help. For that, I use DL-Phenylalanine. Take early morning on an empty stomach away from protein. Amino acid, costs less than $10.

    While using these supplements as drugs, could make a lot of people uncomfortable, I use all of these (and more) with the exception of 5-HTP.(I use L-Tryptophan) I know how limited funds are for you, being a college student, and GABA (and the tea) would be a really cheap place to start. Both would be taken before bedtime.

    I hope something here helps, and I will keep on praying[This Message was Edited on 11/30/2006]
  11. Gothbubbles

    Gothbubbles New Member

    Prickles: I don't have fibro. The myoclonis pain is not a problem anymore now that I'm hopped up of klonapin (each pill is .5 mg) usually I only need 2-4 pills a day to suppress the spasms, but sometimes I need up to 8.

    Elliespad: I'm seeing a neuro in january about the myoclonis, my doctor thought it was pretty weird. (And when a doctor actually says that it's never good lol) My parents have been stepping it up (now that I LOOK sick) and trying to get me in to see some famously good doctors up by where they live. I hope they find something.

    Still a zombie.
  12. shar6710

    shar6710 New Member

    I'm glad you are getting some relief.

    As far as your parents, well I guess better late than never. I hope this neuro doc can help you.

    Let us know when your appointment is.

    Take care,

    Shar
  13. Shannonsparkles

    Shannonsparkles New Member

    I'm so glad you're back!
  14. shar6710

    shar6710 New Member

    Saw your reply about viruses. Sorry you are still so sick but I'm glad you had the energy to post a short update.

    I usually get sick around Cristmas, maybe because it's relly the only time I get out in public much. Sometimes it takes me about 6 weeks to feel better.

    I'm rootin for you! Hang in there.

    Shar
  15. Gothbubbles

    Gothbubbles New Member

    I'm still really ill--seems like my immune system is shot.

    Got really severe laryngitis and then an opportunistic sinusitis like a week later. I'll be acutely ill for about another 2-3 weeks.

    I hope my voice isn't permanantly damaged by this.

    I'm off the narcotic cough suppressants and the inhalors, and I've finished my antiviral and antibacterial cycles and am now aggressively using my probiotics/destroy yeast protocol.

    I am happy that some of you know my username and remember me, and wonder as to my health. It is really nice to know you guys care.

    I hope I'll be able to buy christmas gifts for my loved ones, now that my money crunch has subsided.

    Only buying for a select few though, in case I lose my job and becayse I won't have the juice to shop for everyone.
    [This Message was Edited on 12/19/2006]
  16. shar6710

    shar6710 New Member

    Not sure how I missed this, I'm sorry it has taken me so long to reply. I have seen some of your replies to other posts and was pleased that you had the energy to do a little more.

    I rarely catch colds or the flu anymore but usually once a year I get unlucky and am really sick for about 6 weeks. Sounds like you do the same thing.

    Hope you are feeling a better enough to enjoy Christmas day.

    Merry Christmas

    Shar