When do you stop feeling like you are near death? I Dream that maybe I have been miss-diagnosed. I wish to have some thing that can be cured and I can feel ok again. Is this a feeling with which other have?
Like every day. Each time I go to the doctor. Each time I feel better. Each time I feel worse. I try to pretend that in a few years it'll all be over with and the pain will be all gone. It scares the living daylights out of me to contemplate getting old(er) and coping with this illness, especially with the dearth of medical information available on it.
i feel like that all the time, its just awful!!!
i sometimes think that i can die of being in pain so much
i really wish you the best
I get that feeling all the time, like I've been poisoned by something and it's slowly killing me..because it is so chronic. Gosh, you just need a break sometimes. Yes, I often wish I had some other disease. I never thought I would wish to have a disease, but one with a cure sure would be better than fibro! I know. I was in denial for years about having fibro, I even argued with the doctor who diagnosed me. Partly because no cure is known yet and because I knew as soon as that name fibro went on my records, doctors would lump all my problems and symptoms together and call it all fibro. Scary, because they can miss diagnosing a serious illness with that attitude.
Having said that, they really don't know what the root cause or causes are for the condition that is called fibromyalgia. Who know, there could be multiple causes that put our bodies in this state. I think it will take time but there will be a breakthrough and they'll start figuring it all out.
I think you are right, allergic, I think they know a considerable amount more than when I was first diagnosed years ago, my greatest asset was getting a further diagnosis and getting the biologics, but perhaps some people never go past fibro, maybe fibro is that hallway or limbo area right before the autoimmune. Just a supposition, not a medical definition, by any means. I found a good link I posted on another site today, let me see if I can find it again, it explained a lot to me.
Good link SK. I know what you're saying about limbo area. Autoimmune diseases are not always easy to diagnose at first, if you've noticed. It's like the tests keep coming negative, but the symptoms are there and then not there. Like it's lingering in the body but not full blown yet. The part in the link that mentions that women are more prone to autoimmune is interesting due to the hormonal fluctuations. Also, overlapping autoimmune diseases almost always in the family in females. One of my doctors did a test on me, forget the name, but it showed my cytokines to be very elevated. The cytokines indicate inflamation in the body. Cytokines are mentioned in the link information. All the pieces are there, but they just haven't put it together yet. I'm hoping they already know but are just double checking!
I feel like this everyday. All the time I wonder if I have something else wrong that they arent seeing cause of the fibro and sometimes I wish they would find something else so that they could fix it. I have asthma on top of my fibro and my fibro likes to bother my chest and ribs and last year my asthma got worse and I started to notice that my heart was working hard at little things and really thought something might be wrong but after a bunch of tests everything proved to be fine and I let it go to the back of my mind until lately when it has started happening again but if I bring it up it makes me feel like a hypochondriac, but I think a lot of it is just being so tired of feeling this way.
Every day I search for hours trying to find some illness which might be to blame. I don’t know how people live like this for an entire lifetime. New symptoms keep appearing and things seem to get worse.
I dream of being taken to a hospital like on the TV show 'House' where they keep you, totally go over you from the top of your head to the tip of your toes and don't quit until they finally have the right diagnosis and the right treatment! Surely we all have such a wish!
Hope today has been a better day for you!
Josephina, here is something that I have been re-reading, so it sinks in. It may be another tid bit for you.
I have often wondered this myself. When I was first diagnosed I laughed because I had always thought fibromyalgia was somethign that was made up by lazy people just to have something to complain about. Unfortunately I was extremely wrong. This is the thing in my life that causes me the most depression. I have missed so much work in the last year I am afraid I will be fired. I haven't felt well in so long. I have begun making myself do exercise and I got a dog. I know it sounds crazy but those two things have helped mentally even though physically I still hurt so bad. I will be in prayer for you and me. This is horrible.
SK, I am with you! Every time I have gone to a different doc, I have had it in my head that this one will be the answer. Now, I think that there won’t be an answer; however, I am still holding on to some hope for this trip to UAB in September. It is frustrating and scary to think that I will have to live like this the rest of my life. But, I am alive and life can be so, so good. Thanks for the link. Gentle hugs, MB
Dear Petunia Girl
Thanks for writing a response to my post. Do you have scary times all day? Or, do you get scared when you are feeling pain, or when are your worst times of the day? I can relate. I feel most afraid when I get threw the day but, I realize that I have not been able to do much and the day is over. When this goes on and on and on day after day, I start to feel like there is no hope and I become scared.
Yours truly, P.S. can you elaborate on "death of medical information"
Hi. thanks for replying. And thanks for the hugs. You are so young. Its really hard right now for me to reply to you. Not because I don't want to but, I think because at least I have had some years to raise children, play, and I know many years of comfort and well-being. I just hope you can and have surrounded your self with people who love you and understand, believe in you and can help you smile.....Please except my hugs back...
Dear Allergic (pretty rose person)
Thank you for replying. You have thoughts of this and others do too, so I can feel a little better about thinking of it. A double Ya about doctors lumping things up. As a matter of fact, when they first found my thyroid problem the doctor I was seeing at the time told me that the way I was feeling was tell-tail symptoms of a failing thyroid. Ha! It would be so nice to have a cure for every illness on this planet!!!
Holly-Cow, I just finished watching the whole series of "House", My son has NetFlex. I had never given it the time of day before. Any ways, yes I would love to meet a "House" and have my life but back to the way it was too. I am glad that it may not seem like such a selfish thought after all.
You were one up on me. I did not even know what it was or had even heard of it. This is the truth! I only saw the TV adds that were out for (Climbalta)....I just know I did not spell that right... And even then, I could not relate. I just kept thinking WoW, what a lot of bad side affects those pills have. I even told younger daughter that I would rather die of the illness then take my chances with the meds. How Ironic.
Yours Truly P.S. Thank you for putting me in your prayers.
I want to watch “house”. I have Netflix but when I search for house it doesn’t show up. Help! I am also addicted to Greys Anatomy. That is on Netflix. They solve every medical mystery in like 5 minutes. Oh, to have that ability. Sigh.
its kinda funny you mention House cause i have had friends and family tell me i should b on a real life show called mystery diaginoses. its on a channel called discovey health. this show follows people as they go on their journey to find out what they have and then find a cure. i do wish like others that House was real and we could b his paitient.
i have had this feeling alot. i am not sure if its the depression causing the feeling or just feeling so much pain that u dont see how u could live through it. once i told an er dr if he couldnt find out what was causing my pain and take it away i would rather just be dead. well i wasnt released after that i ended up being admitted and having someone with me at all times to make sure i didnt kill myself. i didnt want to kill myself i just didnt want to continue living in pain.
please do whatever you can to try to keep the depression at bay so u dont get where i did. i know is not easy. the number listed on this site is great. i have called many times when my depression was bad and they were able to help. with this disease depression creeps up and tries to take over. i truley hope u can find a way to get some joy back in your life. it may help the feeling of being near death. i know its very hard living with what is now a disease with no cure. and one where drs can end being more unhelpful than helpful at times.
i will send prayers your way hugs to you too.