SO SO Frustrated! Help! read end response guys, tnx.

Discussion in 'Fibromyalgia Main Forum' started by Wolverine, Jun 23, 2003.

  1. Wolverine

    Wolverine Member

    Hi all, sorry this is a bit of a vent, but i am so terribly frustrated with everything. Its bad enough that i have to like in hell every day with such awful pain, weakness, depression and no quality sleep, but also not being able to take anything thats sposed to help makes me feel like i mite as well throw myself off a cliff! :( though i wouldnt because i want more than anything to be well again. Im getting desparate though and have bought somany expensive meds that i cant seem to take cause of such bad sensitivity. I tried Klonopin for the 1st time last nite, and i had an awful night! I felt very weak, not nice relaxed like i thought and i felt like something awful was happening but i could hardly move to tell anyone. my heart felt weak and was skipping (ectopics). felt like my adrenals were totally drained - someone opened a door in the house at about 3am and i felt this AWFUL rush of weakness through my body like i was going to have heart failure & there was no adrenalin response! was so scared. And you know what? that was on a little crumb of a tablet. thats right, i cut a tiny corner of A QUARTER OF A 0.5mg TAB!!!!!!!! :( I cant believe it, i wish something would just work for me. Am i just too weak to live if this world anymore?? Any help would be so appreciated right now! :(

    Hugz all, Chris.
    [This Message was Edited on 06/27/2003]
  2. Holly917

    Holly917 New Member

    Hi Chris! First of all, take a deep breath and make a really funny face in the mirror. (It always works for me, even when I am really angry) Anyway, I think that most of us can relate to your frustrations. I have some of the same, being a single mom on a fixed income. I can't even afford any expensive meds. Getting back on track here, I've learned one thing with having FMS for at least 15 yrs. You have to mourn your former life, and realize that your life will not be the same as it was until they find a cure, if even then. I was in such denial that I argued with my doc that I wasn't depressed about my life with FMS. I just didn't want to accept it. Then, once I finally, and reluctantly, accepted the fact that I have FMS, I decided to do something. I started researching everything I could find on the subject. I took info to my doc and asked him to try new treatments and meds on me. Sometimes he did, sometimes he didn't. At least I tried. I have written letters to local, state, and federal officials about the challenges that face those of us with FMS. I also took a class at the local community college to keep my brain from completely slipping into fibro fog. :) Please look at my website. There are tons of documents, links, and abstracts pertaining to FMS and treating it. Lastly, my belief in God has really helped me with the depression and worry. I have put it all in His hands. I no longer worry, and I am rarely get depressed. After all, it could be worse, right? :) Anyway, good luck to you, and God bless.
    (Edited to remove URL)

  3. klutzo

    klutzo New Member

    My printed sheet of drugs I've reacted to is a whole page, single spaced, so I feel for you. Igive it to every new doctor I see, and they usually look shocked.
    Many people cannot take Klonopin because it can cause respiratory depression. That is what it did to me and it felt just like you describe, except I noticed that I was not breathing enough,and when I counted, learned I was only breathing 4 times per minute. If that is what is happening, you should not take it, and you should also never take any quinine derivatives either for the same reason. That means no over the counter meds for restless legs, like Q-Vel, for example.
    The chemical sensitivity we have is, I believe, due to adrenal fatigue. If you go to the website of Dr. Gerald Poesnecker you will read an explanation for this and much more. Click on the archives, then click on The Nature of the Adrenal Fatigue Patient, and also look at the Selye chart of Low Metabolic Energy stages. Then go to the website of Dr. Bruce Rind, click on the thyroid/adrenal box, and select "Metabolic Scorecard". There you will see a list of symptoms showing what adrenal fatigue does to you and I think you will be amazed at what is on that list.
    I know I sound like a broken record around here, but I really believe supporting the adrenals and other glands that are suppressed is key to improving this condition. Your body cannot fight if it has no energy. There is no magic pill to swallow...if there was, we would all have taken it, and this Board would have no reason to exist. That does not mean there is no hope...there is, but much of it we must do for ourselves.
    You are not alone, and we can all get through this together.
    Klutzo
  4. Shirl

    Shirl New Member

    I do not take Klonopin, but I do take Xanax, same family of drugs for anxiety. I have never had a problem like that.

    Mikie takes the Klonopin and does not have a problem with them. I wonder why that happened to you? Can you call the pharmacist? Is it alright to break the tabs up like you did? I know some drugs are not meant to be broken up. But don't know about the Klonopin.

    I would check before you take anymore. You might be allergic to them.

    I have had some bad experiences myself with meds, I know where you are coming from, but I have never tried that one.

    I am sure someone here will be able to help. Just drink a lot of water to get it out of your system till you find out what the problem is.

    Let us know how you are, please!

    Shalom, Shirl
  5. Mikie

    Mikie Moderator

    This type of reaction from the Elavil and the Flexeril. When we take any type of medication which works in the brain, we can have strange reactions.

    As Shirl said, I tolerate the Klonopin well, but you may not. If such a very tiny dose did this to you, I think you should call the doc. Neurontin may work better for you. A new drug, Gabapentin is coming and it is supposed to be better than Klonopin or Neurontin.

    Have you tried the ZMA sold here. Shirl and many others swear by it. It's just magnesium, zinc, and vitamin B-6. It works well with meds, enhancing their effectiveness.

    I'm really sorry the Klonopin isn't working, but if it were me, I would not continue it until talking to the doc. Sometimes the side effects diminish with time, but your reaction seems pretty severe for such a small dose.

    BTW, I do cut up my daytime dose, slipping 1/4 of a .5 mg tablet under my tongue. Both the doc and pharmacist said this is fine.

    Love, Mikie
  6. MUSM

    MUSM New Member

    Hi Chris,

    Please don't feel that you are too weak to live in this world anymore. I agree with the person who posted their comment that we have to mourn our former lives and forge onward to our new life. Yes, it really does suck a LOT and I grieve every day for my former self that is only 42 and SHOULD be feeling wonderful. I'm so sorry you are struggling so badly. We just have to make the best of our rotten situations. It hurts more (for me anyway) to fight it. I noticed that when I gave in to the fact that I am NOT a person without fibro anymore, I felt better overall.

    Talk with your doc about the reaction to the medication and do not take it again (like you would with that reaction, but just in case...). I take Xanax for anxiety, Neurontin at night and Celexa (antidepressant) during the day. None of those (except drowsiness from Xanax) have caused me any strange side effects that you described. We are all different though and you have to just be a guinea pig for a while...and I know it's hellish, I've been there for years.

    Hang in there, we are all in the same boat. Reading the posts on here make me realize that in a world where people are looking at me like I'm insane (how could I feel SO much pain when I look fine?), there are others who are like ME! Keep sending out notes and we will write back and talk it all out.

    Take good care and God's blessings on you!

    MUSM
  7. kay194952

    kay194952 New Member

    Mourning our former life is so true. It's harder, I believe, because people look at us, that is if we dare to tell them what we have, and say they've never heard of it or just say nothing. It's not like if you have cancer or epilepsy or a heart attack. People can relate to that. So many people have said to me, "but you look great!" I say, "makeup and a shower can do wonders! I've finally learned after so many yrs (diagnosed about 15+ yrs ago) to say "no, I cannot do that or go there." Some people understand, some do not. Fortunately, I have a wonderful husband and family who have seen me on my worst days and know that "it is not just in my mind." I thank God that I can still work 40 hrs a wk, however, it has caused me not to move up so fast sometimes. Please say a prayer for me... I begin a new job in a few wks and want to make a good impression.

    Take care,
    Kay194952
  8. Wolverine

    Wolverine Member

    Holly - thanks yeh i try to do what i can, but im so bad i could not go to college or anything like that at all. I often have a terrible time just trying to go to the shop, i often get taken down there, get out of the car, and my whole body feels so weak and turns to jelly - i shake so bad and feel like collapsing - have to get taken straight home again! :/ not every day is like this but many are. When i have crashes they often arent just 'i have to lay down' type crashes, but end up in ER taken off by an ambulance because i get so weak and shaky and my heart goes weak and rapid / blood pressure gets to 80/50 and below. They have to put 2 litres of fluid into my veins straight away @ 1 litre per hour which usually brings the blood pressure up about 20 points. Its been so hard lately. Thanks for the website! i do heaps of research too and take it to my dr - trying new things every week lately.

    Klutzo - yes i agree totally about the adrenal fatigue specially with my low blood pressure, NO stamina, no energy, constant crashing, and complete inability to cope with the smallest stresses. As ive said, i cant take the cortef, or the adrenal glandulars (well the one sub lingual one i tried i was very allergic to) the only thing i take is this adrenal support formula which has liquorice, B5, ginseng, foxglove, l-tyrosine, gotu kola etc. I dont know if its doing much though, i dont feel anywhere near as good as when i USED to be able to take low dose hydrocortisone. :/ its frustratin indeed! Also about klonopin - yes i kept drifting and then waking suddenly with a deep gasp of air as if i'd stopped breathing! so true. dont think im gona continue on that one! i need somthing tho my sleeps awful

    Mikie - Neurontin does a similar thing to klonopin tho no where near as bad - i can actually sleep well on N, but feel very weak and over relaxed the next day. Can barely stay on my legs. Thats with small doses too. i could almost use the neurontin if it weren't for that awful next day prob! oh yeh - gabapentin is neurontin - its the drug name for it. :D Man is there anything that doesnt knock u down for the next day? (well me anyway!)

    Msum - yeh i do mourn my former life and try to look onto wen it will be better but so hard! yeh im only 24 (well 25 today actaully) and ive barely been able to do anything for that lst 3 years - only seems 2 be gettin worse - so im missin out on my 20s! :( its so horrid. Yeh i could try xanax but it seems everything lately i try in this category does a similar thing and i cant have it. Maybe i should try a few more ssri's or somthing - i used to take luvox ok but i was pretty out of it on that, not 2 bad tho. yes the looking fine thing is grr! wen ppl say that!

    Slowgirl - oh yes! about the liver thing. I have awful liver probs and liver pain every day. no i cant take the olive oil thing or id be in hospital - my body can only take such tiny amounts of fat at once otherwise i get terrible uper abdo pain. I too have 2 drawers full of expensive drugs (any buyers? LOL juz kiddin :p )

    Kay - yeh i agree with that - so many people look at us sideways or up and down as if to say - what are u on about? u look good as the next guy. (well for me im quite underweight and often a bit pale but hey). Yeh im glad u can work and will pray for ya for the new job :)

    Thats the other frustratin thing - im 25 - been single pretty much since i got sick, and think, who will ever want me like this? i cant do normal things for a girl and no one at this age would just wanna stay home all the time! Anyone else find this sorta thing hard? is anyone else on this site in their 20's?

    Anyway, thanks heaps for listening, Hugz all! Chris.
    (Edited to remove URL)
  9. Wolverine

    Wolverine Member

    bumP bumP BuMP!!! :D
  10. Eve612

    Eve612 New Member

    This sounds so familiar..I, too am very sensitive to so many drugs & can't tolerate even a partial dose of them. I tried an anti-depressant once & ended up in the emergency room. I recently tried to switch my thyoid med to Armour from Synthroid, & ended up thinking I was having a heart attack when I was out of town shopping! I know that many drugs help lots of people, but what do the people like us do to find some help? I keep looking for natural remedies to help the symptoms, I know they are out there, but so far, I've not found anything to help me feel better. Maybe I've got to accept the fact that I have to spend the rest of my life feeling half alive....discouraging.

    Eve
  11. franners

    franners New Member

    I know how you feel Chris. I never use to have drug allergies until 10 years ago then when placed on Penacillin (which I had taken before) I developed a rash and itching in my mouth and throat and I could barely talk. It is odd. We just have to do what we can with what God has dealt us. If God gave us this it has to be for a reason. Maybe it is so we would all meet on a web site to help with things like this. Who knows. We just all have to be there for each other in life.
    I agree that you should not take the med until you speak to your GP. If you ever have reactions in the future I would even had him/her paged if they are not in the office.
  12. Wolverine

    Wolverine Member

  13. Wolverine

    Wolverine Member

  14. Wolverine

    Wolverine Member

    oh yeh, oh yeh.
  15. scottabir

    scottabir New Member

    This is horrid! It sucks to be in your 20's and watch your life pass by. I am a person with tons aof ambition but no energy to support it. I am tired of staying home on Friday and Satirday night while all of the other's my age are out having a good time. I completely understand what you are going through. I am slowly getting better. My chiropractor has been the greatest help in my life medically. He has me on a program to rebuild my immune system as well as all of the organs that seem to be destroyed (adrenals). He said I have burned out my adrenals from all od the refined foods and sugars I consumed.

    As far as dating goes...I understand. Luckily I am now married. When I first became ill I was engaged to some guy who couldn't (more like didn't want to) understand. It tore us apart. I am now thankful for that. I have a wonderful husband who works hard so I can stay home and tries to help me out in every way he can. I just wish I could do the same for him. It feels so one sided. Give it some time, you will find someone who will stay by your side despite this DD. Look at it this way, at least you will have this DD before you find that person instead of becoming ill during the realtionship. That will make it easier on the realtionship. Also, it will happen when you least expect. I met my husband over the internet, hehe!!

    Good luck and keep your head up...and get plenty of REST!!!

    Abi
  16. killerqueen

    killerqueen New Member

    Hi Chris, Im new to this site, but its so good tt hear from other CFS sufferers who have similar symptoms to mine. i.e. neuro.

    I also cant take a micro drop of anything, my GP says its psychological!!!

    But, I ve found a doctor who practices integrative medicine and says its due to me being a pathological detoxifier, simply my livers not working properly so all the toxins are buliding up in your body. However , treatment isnt so easy. Ive tried homeopathic drops and yes they affect me too. The toxins released in detoxification head straight forthe brain and nervous system. Lovely. I think not.

    Im now going to try the QXCI, which basically is an electrodermal resonance device which reduces stress on the body, to be taken at fortnightly intervals. I had only one session last year and i felt slightly better, for the first time ever! Theoretically , the more chronic your illness the longer it takes to feel any improvement. If it works I shall keep you posted.

    I was diagnosed with having, weak adrenals, thyroid, sluggish liver, candida, parasites, bacteria, and a high level of free radicals in my body. Diagnosis is straightforward enough, but its treatment is where the skill lies.

    Ive never felt better with supplements, purely because my body has such low energy anyway it cant process them. It has to learn how to heal itself first, indeed the times are feel better whenI do nothing at all.

    I hope you feel better reading this, as I think there is real hope in getting a lot better, its just finding the right approach and a good phsician.
    Love and light

    killerqueen!
  17. Wolverine

    Wolverine Member

    Yeah so there is a few of us! i got all those diagnosis at some stage too killerqueen. That electro treatment sounds good, some of those thigns can definately work. Yeh alot of suppliments make me feel yuk too because i cant detoxify well either.

    u guys can email me at csck@hotmail.com

    Chris
  18. cindye

    cindye New Member

    For three years I surfed the net, went from doctor to doctor with all kinds of stuff off the internet then I came across a book "What Your Doctor May Not Tell You About Fibromyalgia' It is very informative on fibro and I found a chiropractor who believed in the protocol listed in the book. This book led me to the treatment which turned my daughter's life around! I know guai does not work for everyone but it may be worth a try. Good luck!!