Jump to content


  • Posts

  • Joined

  • Last visited

Contact Methods

  • Website URL
  • ICQ

Profile Information

  • Gender
  • Location
  • Interests
    I love photography, especially of my family, pets, and nature. I also like sports with my kids, swimming, riding bikes or ball. (at least I used to.)I also like scrapbooking which goes with the photography. I also like working on our home and yard. I just wish I had the energy to do it all again!

Recent Profile Visitors

2,477 profile views

all4family's Achievements


Newbie (1/14)



  1. Hi everyone, I have also had a bad experience with chiropractic adjustment. The problem was that my neck wasn't ready to be cracked. It did crack on the one side, where I always get a crack, but when he tried the other side nothing, and unfortunatly he tried 3 times. What I have found is very similar to what Ashelton describes which is that my neck almost adjusts itself. The symptoms build as the neck is getting tighter, and usually after a neck massage some time after that it cracks. I stretch it, but it is minimal that I stretch it. And this is what was making me better for quite some time. I know it was. But each time it would crack I would have a "bad" period before I would heal. But if I just waited long enough I was usually very happy with how I felt later. This time was really bad though. The crack and the "healing" time after. As the tension is starting to wear off though I think I may see a lot of healing. I will let everyone know if I do a big turn around and feel better. I have seen things on the AO, and I believe it is a good way to go. I haven't had it done myself, but with my neck self correcting hopefully won't need to. I have an electric percusion massager, and I pay my kids (lol) to massage my neck with it. It can make me feel better anytime I feel bad. Hope everyone feels great today! Suzy
  2. Hi, Made me feel good to know I'm not the only one. When I first got sick I was a regular ER visitor. I was labled crazy. Never helped except when given an iv once in a while helped me pull out a little. After diagnoses once when I passed out in public, and was told by a mean nurse to go home and not come back. I do faint, but don't go to the hospital for it, unless I don't come to, then I won't have a choice....I just come to, and then lay down a lot. Suzy
  3. Hi everyone, I just posted a little while ago because my symptoms flaired after my neck cracked, and my symptoms flaired back up. At my doctor I found that what I had wondered and suspected all along was true, and that was that my neck problem, which is actually spinal cord compression of the c-4 and c-5 would cause the problems I was having. So while suffering again and looking for some type of peace with it I was searching on your tube, and the first video I found was a girl with EDS who got dysautonomia when she sublexed (partially dislocated) her neck. For me all my problems started a couple days to a couple weeks after I had side to side whiplash. I know everyone would like to find a cause and a reason. Maybe this can help someone else. I am working on my neck and praying it will make things better. Right now I am having a lot of neck issues, but am hopeful for healing. I hope this helps someone else. here is the video if anyone wants to watch it. Suzy
  4. LMG, when I was at my worse was about 2 years that was 2004 to 2006. These years consisted of drug treatments and interactions, then a year of recovering from those reactions. My illness at this time was severe, and without going on and whining about it I will just say that I could not have gone on that way for long. then from 2006 to 2008 I was still pretty sick, but was happy for the function that I had. I was able to get off my floor where I spent almost all my time, and begin joining life again. Each day away from the medications was a better day for me. Then I believe it was 2008 when I went to the dentist and was prescribed profolactic antibiotic. I was supposed to take 4 pills, and on the 3rd pill half of my body swelled up, which led to benadrylle, which led to another reaction which led to the hospital a place I swore I would avoid at all costs. Well after a few months of this again I went to Mayo Clinic. This is where a blood test led me to find out I had dysautonomia. after this I have been on no medicine except once when my pain from a tooth was so bad I took some tylenol, but I was so scared. During this time my neck would periodically crack. It always happened when my symptoms had gotten bad. But after a few big cracks and a healing period I always got better, it was so gradual I forgot how sick I had been (thank God). Then recently I had been working outside in the heat, and one day I had a huge crack in my neck. Well this is what started this spell for me. But this has only lasted about a month, and I am already getting back to where I was before. So for a specific answer to your question it was all so gradual that I don't know, some times were better then others, but I definatly have gotten better over a longer period of time. Hi Ahselton80 thank you for mentioning that. I will look that up. I think I have read about that before. I hope that helps you to the point my neck cracks have helped me. Suzy
  5. Hi Naomi and LMG, I have been looking for a neck connection with my illness since it started, because the symptoms started very soon after I had side to side whiplash, and as time went on were relieved by my neck "cracking" which by the way is something I do because my body tells me to, not because I am trying to fix it. I did go to a chiropracter once in the beginning of this, but he did a quick crack which he was able to do on one side, and then tried 3 times on the other side with no results. That ended up being not such a good thing for me, so I quit going, but never stopped looking for the connection. I found a chiropracter on you tube a while ago that explains a lot of how our body and our nervous system is tied in with our spine. He says c-3 c-4 c-5 keeps you alive. I don't believe having my neck cracked by force by a chiropracter is the way to go for me, and won't have an adjustment like that again, but I do believe there are different chiropracters and such out there that don't work by doing a sudden crack on your neck. I know there is some that work slowly with gravity etc. to get the desired effect, which is what I will be doing. I will be doing traction and neck exercises. This is a nice slow way to work on it so as not to shock my body in anyway. Also as more days pass and my neck heals from the last crack, I am feeling once again a relief from my symptoms, and am even looking forward to hopefully some improvement. my neck cracks because it is ready to. Not because I go in and have an appointment to get it cracked. It gets tense I stretch it, and it cracks. I promise I don't throw it and try to crack it. It is just a simple stretch that makes it crack. I hope everyone can find a solution to this because I know how hard it is to not want to try anything that might stir it up or make it worse. But for me I have always known and believed there was somehow a connection with my neck. Now having a doctor confirm that yes there is a connection there gives me the confidence that I knew my own body well, and was right for all these years that yes my neck can cause these symptoms. Suzy
  6. Hi Hanna, Did you also have the antibodies to the ganglia? I have luckily had longer and longer stretches of doing well, which I can't say enough about. Sorry yours flairs up so often. When I was first sick it was 24hrs 7 days a week no relief for probably the first 3 years. I actually just came from my natural Dr today, who specializes in something with the bones etc. but not just chiropractic. When I gave her all my medical records she looked at them, then I handed her the one where my c-4 and c-5 were compressing my spinal cord. It was like a light went off in her head, and she told me everything I am experiencing now ties into that. I was never so happy in all my life, because I knew there was a connection. and the fact that my neck injury happened just before I got sick, and this time I also "cracked" my neck which may have triggered my sudden rush of symptoms. She is starting me on traction for my neck, and also some neck exercises, so that when my neck goes into place it will be stronger and stay there. I don't take any medication. I am missing a gene called cyp2d6 that metabolizes drugs, and have had multiple problems with drugs. I also have had positive tests for mast cells, and due to this they thought the best course for me was natural with salt and fluid, which I couldn't of agreed more. I am glad to hear that the improvement of your neck also improved your health. It would make sense that the autonaumic nervous system goes through the "nerves" which travel these pathways. Suzy
  7. Hi Sue, and thank you. I believe most of it boiled down to one big thing for me, but it was also a lot of other little things I did. When I first got sick one of the tests that came back abnormal for me was a pinched nerve in my neck. Or so I thought thats what it was. I always had a very tight neck, and I had this internal need to always crack it in the direction it needed to go. And it wasn't like a chiro crack it would get so tight I could barely move, then it would crack so bad people could here it in another room of my house. Well it started to crack a lot, and I noticed a pattern of it cracking, me getting better, then worse, then a lot better. I went back to look at my paperwork from the "pinched nerve", and when I read it again I was kind of surprised to see that it said I had spinal cord compression. Which is why the first doctor reffered me to a neuro surgeon. Well I did have another neck crack just before I got sick again, and it was a big crack and different then the ones before. So I am hopeful if it is like the ones before where I get better worse, and better again, and the better just hasn't come yet. I also read a book your bodies many cries for water, and really forced myself to drink enough water, even when I didn't feel like it. And there were a lot of times I didn't want to drink, it would nausiate me, and I would drink a little at a time until I could drink more. Well I worked out in the sun and did a lot of running (something I wouldn't have done at my worse.) and the funny thing is I can only drink very much water laying down, so I try very hard to take water breaks to make sure I stay hydrated. So when I was so busy working I didn't take enough breaks, and although I still drank water it wasn't nearly enough. So what it boiled down to for me was my neck, and resting when I needed to, and making sure I got enough water. With salt. Sorry I don't have a better answer. I know we would do just about anything for recovery, but that is what worked for me. I became a very natural person through all this because the medications and dyes and everything else that was used made me so sick. that also helped me. I hope that this can help you somehow. Suzy
  8. Hi to everyone! I am a member who came to this site in 2008 when I first found out that I may have autoimmune dysautonomia. I used to come here often and always found so much support and compassion. I have seen quite a few names here from before that I remember, and it is good to see you all again. Wish under better circumstances. I learned a lot in dealing with my illness from here, and was well on my road to recovery....I would even say I was 80 to 90 percent better. Until recently I became dehydrated from working outside in the heat, and had a couple other things happen, when wham out of the blue ended up in the same boat I was in a while back. So after 2 weeks of denying, and looking for what else might be wrong with me it suddenly hit me today. I bet this is a flare up of my dysautonomia. So here I am reading and catching up. Good to see old friends, and hi to new ones I haven't met yet!
  9. Hi Brynne, I actually made a similar post after I was first diagnosed. My husband bought me a wheelchair, and I was torn between wanting to have the freedom to do things, and what the wheelchair meant to me. In the end I couldn't have been happier that he bought it for me. I now have an electric wheelchair, and a manual one. I had been doing pretty good and in fact believed myself to be better, and the wheelchair sat in my shed for probably about 7 or 8 months. I just recently pulled it back out. If you are on here asking about it, I really don't believe you will become dependant. Any time I can walk I do. In fact my manual wheelchair doesn't have a place for my feet, so I use my legs to walk me around while I am sitting. This gives me exercise, but really extends what I can do. I also use the carts at the stores that have them. I had spent many years not doing things because I just couldn't, and when I got the wheelchair I could suddenly do things again. It meant so much to me! It gave me back my life! I hope you will let your father do this for you. It may surprise you how much it will help. As for how to get one we bought both of ours at a second hand store in our area. You can get a manual one for a pretty good price I will bet. Or you could ask your doctor, and depending on your insurance it should cover some of it if not all. I hope this helps. Suzy
  10. Hi dani, I am an old member that hasn't been on for about a year now, but I decided to read some posts today, and really wanted to answer yours. I just wanted to say that it doesn't matter what your choice is you will feel bad for being sick. I had my kids at home when I first got sick, and it was difficult, but what I wanted to do. I actually had someone tell me that I was being a bad mom, and I should put my kids in daycare because it wasn't fair to them to watch me be sick all the time. That they needed to be around healthy people. They didn't know because they didn't know me very well, but they were around a lot of other people that were well. I didn't know what was wrong with me at the time, and I was angry at myself for being sick. And it didn't help what this person said to me. They also told my husband he should leave me. I pushed to do everything I could to just look normal, and in fact frequently lied, (and still do) that I was feeling better then what I was. I wish I had dealt with my illness, and been better to myself, and not so hard on myself. We all do what we can, and that should be enough. You are doing what you can with a very difficult illness. Make the choices for your life that work for your life. And don't waste your precious energy on guilt. Spend it on what you are going to do with the time that you DO have with your daughter, and be happy. Suzy
  11. Yes. I really believe it can get better on it's own. I am doing better. I believe that I am going to have full recovery. It just takes some time. Meds made me sicker, and the longer I am off them the better I feel. But that is for me. I posted"what's in a name", and it explains how I am doing better. Don't lose hope. Positive thinking can only help. And you obviously like to think positive as you are on here looking for positive input. Suzy
  12. Yes. I really believe it can get better on it's own. I am doing better. I believe that I am going to have full recovery. It just takes some time. Meds made me sicker, and the longer I am off them the better I feel. But that is for me. I posted"what's in a name", and it explains how I am doing better. Don't lose hope. Positive thinking can only help. And you obviously like to think positive as you are on here looking for positive input. Suzy
  13. Hi again everyone, So good to see so many familiar names, and a couple of new ones too! Broken Shell, so good to hear from you. I remember not to long back both you and I were going through a rough patch together. I hope that means your doing well now too. Hi Jan, good to hear from you! The drug metabolizing test was one I had done at mayo. If you are missing pathways for the drugs to travel through you don't metabolize them like normal people. So a normal adult dose would be like an overdose for me. And for about 8 months I was on all different kind of drugs while they were trying to figure out what was wrong. I had reactions to EVERYTHING. and the longer I took them the sicker I got. The sicker I got the more the doctors insited I needed more rather then less drugs. Really the only thing I am doing to help myself feel better is staying hydrated, not taking ANY medicine for any reason. I just have to bite the bullet and get through things. And as I started feeling better I was able to do more, I am even exercising regularly now. I am doing a lot to try and build my muscles, hoping that will help. How are you doing?? Last I heard from you you were still up in the air with quite a few diagnoses...Hope things are going better for you. So good to hear from you to EM. I know the drug metabolism test makes all the difference for me. I haven't been to a doctor recently, though I do have a local one now that I seen about 6 months ago. He asked for all my paperwork from mayo clinic, and seemed very interested in these tests. The best part of that test for me is now I can tell doctors meds make me sick by a test I took, so they really believe me, and I don't have to "experiment" to "prove" to them what I am saying. Truly it is a dangerous thing. If a doctor doesn't know and gives you too much of a drug it puts you at high risk for overdose. Thankful, so good to hear from you too!! I hope you are doing well. I will have to take some time and read on how everyone is doing. The camera is so great, and so much fun!! We took some beautiful pictures at the lake, and for valentines day! Hi Chaos, I am really glad that my post helped to motivate you. Before I had a diagnoses, or even had ever heard the word dysautonomia, a family member of mine said to me "Why do you keep putting yourself through this? Your wasting everyones time (the doctors should be able to take care of real sick people) and money. You don't really want a diagnoses. It's a label you will have to carry with you your whole life!(what about the crazy anxious diagnoses??? Do you think I want to carry that one?)" It was a very hurtful thing they said, but made me just avoid doctors.......until my next big crash that landed me on the floor. I hope you get your diagnoses. Even if you have to step on some toes to do it!! AZgirl, so good to hear from you thank you for worrying about my, but sorry to cause it.I hope you are doing good also. Still smoothing out some kinks on this computer, but will try to pm you. I think I have to change my e-mail though. take care. Dazed&Confused, please don't give up!! I know exactly how you are feeling. It's like if you say something and you are wrong then no one believes you next time. I went through thinking I had MANY diseases. And the funny part is I was told I had been tested for EVERYTHING it wasn't possible for me to be sick. I found out about dysautonomia after a mayo doctor did a test for some antibodies. She told me she was doing this test that looks for cancer tumor antibodies. I shrugged it off because I figured like everything else it would be negative. Well it wasn't, and that was what started everything for me. I have counted before, and I think I have 8 diagnoses now. You may get an answer in a way you don't expect. So don't give up! PM me if you want. I will try to change my e-mail tonight so I will get it. Hugs, Suzy
  14. Hello Everyone. For those of you who remember me hello, and sorry I haven't been around. My computer was hit by a virus and was put to rest!! For Christmas I was given the choice of a new camera, (one I have been wanting my whole life!) Or a new computer. Needless to say I have taken many beautiful photographs! In my grandmothers things though was an old but workable computer. So here I am. And for those I haven't met yet I look forward to talking to you. I thought I would come here, and share with you all how I have been doing. First of all I have improved greatly with my health. But I believe that a large part of improvement was understanding what was wrong with me in the first place. In the topic title I say what is in a name? Well the name dysautonamia changed my life. I never thought I would be happy to get a diagnoses of something, but I am sure you all understand where I am coming from here, when you have suffered so long and mostly in silence (as who listen's when you "don't have anything wrong with you"?) it becomes a blessing just to know and understand why you feel the way you do. I have been sick now for close to 6 years. But this last year was the first one that I knew why. I remember each holiday that passed thinking this is the first valentine's, aniversary, birthday, Easter....I'm sure you get it, that I understand what is going on with my body. It has been a deep blessing to know that and understand. It took the fear away and allowed me to deal with things one at a time instead of feeling like I was falling in some vast vaccant whole of pain and unexplained missery!! And for me, like many others here, one diagnoses led to another. The most important of which (to me) was that I don't metabloize drugs properly. I knew that everytime I took something I was far sicker then before I took it, but like everything else, I had been convinced it was "all in my head" that I was just "afraid" of drugs. Now I know that the medications I took played a huge roll in my illness. The good thing for me is that the longer I go without any the better I get. So here I am one year after diagnoses, and I can truly say it changed my life. First and foremost it helped me find peace and acceptance with what was wrong. Then I was given ways to help myself. Not cure myself, but help myself. I have been doing many things that have helped me, and have hope of recovering back to the girl I used to be. I know this is always something that will be here with me, and I believe that I will always have to be very careful, especially with what I put into my body, but I have great hope for a good, and happy future. I hope everyone else here can find there own peace. Be good to yourselves. Remember to be kind to yourself, even if the people around you forget. You have been through a lot and deserve that!! Take care everyone, Hugs, Suzy
  15. Momtogiuliana, Thank you so much. It is so much harder on the kids isn't it? Mine are a little older, 13 and 10, but this is the first death (other then a pet frog) that they have experienced, and I am proud of how well they are handling it. They have been very helpful with all that we have had to do this last week. gomindy21, thank you for the prayers and encouragement. Sorry I haven't been here. This week we had to clean out my grandmas house which was both physically and emotionally draining. I am very grateful to have been left with what I needed to handle it for the most of it. There was even a point when we had a emotional flare up, and my mom was getting bitey and jumping on everyone because she didn't want the fridge emptied yet. Knowing she was under high emotion I made light of it by unpacking the boxes and loading them back into the fridge. Realizing she was just being emotional she started to unpack them, and we went into a race with laughing and everything. The kids and my husband took up sides, and we all kept circling, till I went down, but I went down laughing!! So all in all it has been hard, but I at least know what I am made of. Even with this disease I can face what life throws at me. Maybe not the way I want to, but I face it none the less. I look forward to life slowing back down, and coming on here and catching up with everyone. I am hoping that will be soon, but my 17 year old dog has been sick, and we have to make plans for traveling and burial of my grandma. Everyone take care! Hugs Suzy
  • Create New...