- Messages
- 41
- Location
- 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
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
. 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.