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Never Ask Us if We're Hungry -- The Answer's Always No
There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.
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Thank you for helping me with my symptoms

Discussion in 'General Symptoms' started by judi, Apr 24, 2012.

  1. judi

    judi

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    Winfield, Illinois
    I've always said that if someone would just throw me a bone or two I might be able to take care of myself (to some degree). This week I started to post a little bit here and "nanonug & taniaaust1 " threw me the bones I needed or at least it seems that way.

    I've been sick for years it started off as sleeping 18 hours a day, heart palpitations, swollen glands, fevers, insomnia, internal organ pain, dizzy all the time and then came weak painful arms, an all over sense of feeling weird, and a 2 year long sore throat. Of course it was unanimously determined that I was depressed, I told them I had CFS, but of course they told me that it's not a real illness and I was just depressed. Hell yes I was depressed who wouldn't be after spending thousands of dollars (mine and Blue Cross's) on waste of time tests and visits to find out that the medical community was not able to help me because they thought I was nuts or something.....jackholes...not you all...them.

    At any rate I allowed doctors to "assure me" that what they were prescribing was safe and I was going to be A.O.K (ha ha ha). After 3 years (of being on Nuvigil to stay awake, Ambien to fall and stay asleep, Fosinopril to deal with the high blood pressure the Nuvigil was causing, Cymbalta for pain and of course the depression they wanted to believe I had, and finally Zoloft to wean off cymbalta) I found myself getting tons of new and scarier symptoms. I no longer could feel any pain at all, I was in a horrible accident slammed into a stone wall a nasty concussion and all over bruising and guess what? not one single bit of pain. I also had horrible bloody sores all over my body (oddly in the exact same location of both sides of my body), no one could tell me what they were and after 3 years I gave up on asking, I was back to napping for four hours at a crack per day and I was having weird bleeding from every opening on my body except my ears (scared me out of my mind and cost a ton of money) my ears probably didn't bleed because I couldn't hear out of it anymore because it was plugged up even though my nose was running non stop, my body temp was down to 97.0 at all times and I was constantly sweating and had to keep the house at a temp that only a koi fish could tolerate...i really dont know what koi fish can handle I just like to say things to make myself laugh...and at the end I was experiencing insane amounts of mucus coming up from my throat (sorry to gross you out) and unexpected throwing up. That was pretty much when I said enough is enough I'm sure the medications are causing these problems even though doctors would keep telling me "you're on such a low dose that it can't possibly be having any effect" So in the past six months I've weaned myself off everything and for two glorious weeks after my last three pills I felt normal again. I was convinced I cured myself. If you only knew how many times a year I tell myself I'm cured you'd laugh. The odd thing was when I stopped the drugs I started peeing like I was releasing urine from the past 3 years, it was odd because it was an urgent pee, but then I started peeing less and less and as that happened my heart started to pound. My BP and HR were going up a little more each day so I started taking my blood pressure medication again and instead of it lowering my BP it raised it to "gonna die soon levels" and in addition to that my heart rate would jump up to 115 if I sat down, so I would try to stay up and moving to keep up with it. I was also having a lot of flushing, but instead of freaking out too much (the operative word is too) I told myself it was probably a withdrawal thing and that perhaps I just needed a different BP med. So off to the doctor I went he wrote me a new prescription for a different ace inhibitor, and he added a diuretic it helped a little, but not enough. I finally put 2 and 2 together and stopped taking the ace inhibitor and immediately the BP and HR went down, not perfect, but a noticable improvement, it seemed the diuretic was what I really needed, but oddly the diuretic is still part of the problem. This week I started skipping taking it every other day and that's been helping me feel better on the days off but sicker on the days on.

    As one does when one is struggling I started reading these forums a lot to see what I could glean (perhaps I should have started reading them more years ago) I am now convinced that there is just something about my body that doesn't like just about everything i stick into it...and i dont mean like a qtip in my ear, because almost everything i eat causes acid indigestion/flushing/and that t word for your heart acting looney. I'm thinking I might be histamine intolerant or maybe it's like mastoc...whatever it is...... and as an aside.... when I was on all those meds I became allergic to my daughters cat. I have never had allergies in my life, but if i touched her cat i got nutty alergic....i chalked it up to menopause, but since taking myself off the medications I can now touch her cat again and it's like i'm no longer allergic.

    So long story not short. I found a doctor that deals with mastoc...whatever it is and maybe she'll be able to guide me, but I don't think she'll be able to guide me as well as all of you. I really do feel some kind of bond with all of you and I'm grateful to you all for talking to each other and for the opportunity to read what you all write. I hardly understand most of it, but I get just enough to feel hopeful. Thank you all
  2. judi

    judi

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    Winfield, Illinois
    PS it's just about going to kill me to have to keep cutting out foods that make me ill, I used to swear I'd go to my grave with some candy and cake in hand....... life is hard, but death is harder! that was a bit of a joke. be well all
    charlie1 likes this.
  3. judi

    judi

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    Winfield, Illinois
    and one more thing, recently my naturally curly hair went straight except for a clump of hair at the top center of my head which now looks like it came out of a dr suess book.... it sticks straight up in the air and it feels like someone used a crimping iron on it........ it's funny, but scary, but funny
    charlie1 likes this.
  4. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Southern USA
    Regular doctors usually have no training in the things we need. I have only had help from integrative MD's. We have to have doctors that understand food, supplements and chemistry. I take meds. only when there is no choice like antibiotics. I take supplements and eat foods that have taken my CFS from horrible to great. My POTS is improving so much also. Meds cause terrible problems sometimes. I blame them for my POTS. Chemicals should just be used when there is no other answer.

    Diuretics can be a problem. With POTS, I would never be able to take them. I was told to try when my BP went high after the POTS. I was so sick that I could not move for 9 hours. SO DIZZY.
  5. judi

    judi

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    Winfield, Illinois
    I'm afraid of the diuretic and want off of it ASAP. I'm not sure I understand POTS yet, I've seen it mentioned here a lot and i've read about it some, but it's not computing in my brain. "only when there is no choice" is my new motto....I'm now at a point where I am dropping foods like a baby drops cheerios from a high chair and every now and then I'll put something in my mouth that I'm sure will make me feel not so good just to make sure I'm not wrong. Id sure hate to give up something I love hastily! I suppose I'll be a supplement taker before you know it, but at this moment I'm just trying to not rush into anything new until I get things sort of going in a better direction.

    What is an integrative MD? I can google, but if you feel like sharing I'll be reading.
  6. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Southern USA
    Integrative MD's can write prescriptions and they are regular doctors, they have just had a LOT more training. They can help with other treatments and are trained in more than reg. docs. Mine have studied supplements and vitamins extensively and traveled to many meetings to learn all they can. They can treat in whatever way is helpful for the patient. Mine works as a team with me. He knows I do a lot of research.
  7. taniaaust1

    taniaaust1 Senior Member

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    Sth Australia
    Hi, glad you are feeling better about things :) . sorry my memory issues have made me forget seeing you before, so I dont know what my past post to you was over and hope I dont repeat anything previously said. Im just glad to hear that something helped.

    :D

    Im currently having that same issue again with loss of feel in parts of my body.

    I once got very bruised by doing something I didnt realise was injuring me at the time and when I realised I was had been badly hurt, which I saw.. I had massive intensive PITCH BLACK bruising to the point I had had to go to hospital for scans (to check that i hadnt developed blood clots from it).

    Im currently loosing the feeling in my tops of my hands (thou palm side is good) and this is causing me to be burning myself more then once a fortnight as I arent aware when my hand brushes top of oven or I splash hot water on myself.

    I currently have a big sore on my hand just above my thumb, due to where I blistered myself yet again (and didnt feel it so didnt know about it until the next day when I seen it http://i1190.photobucket.com/albums/z458/taniaaust1/whatblister.jpg ), the skin has now come off the blister so its now left a big sore.

    I had a abnormal mucus experience this week I hadnt had before.. was going to post about it but Ive been doing so many other posts about things Im currently going throu that I havent posted it as yet. It was weird. I'd been upset so crying a little, then SUDDENLY my WHOLE MOUTH was filled up with this mucus.

    I spat it out immeditely to look (it started to choke me), it the was thickest, stretchiest with the most volume mucus I think Ive had in my life (as you said..it was insane). It stretched out longer then a arm length without breaking (it didnt break.. I ran out of arm spam with the stretching).. and when I tried to wash it off my hands.. it wouldnt like wash off.

    I really had to scrub my hands with soap, really scrub to get it off my skin (it needed soap as a solvent to remove it from the skin), even most glues washes off ones hands usually better then that. It wasnt a yucky colour but clearish maybe with a white tinge coloured mucus.

    sorry for the details(lol "Tales of Hell sharing"..thou this didnt look yucky as such..could of looked far far worst, but Im wondering if the mucus you experienced was anything like this. Im kind of wishing now I'd kept it and had it analysed to see if anything was growing in it, it was just so strange.

    (just a quick note to be aware that many of us wont be able to read that large section of your post due a big block of it which isnt broken down into chunks. I was unable to read all of it due to that).
  8. roxie60

    roxie60 Senior Member

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    Central Illinois, USA
    Cymbalta nearly killed me, very toxic. Affected muscles, brain, nerves, entire body.

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