Foofie

When I initially got so sick I went to the doctor over and over again. I kept telling him that something was very wrong. On my 3rd visit I was so frustrated because he was telling me I had CFIDS. I had never heard of the disease at the time and basically kept shaking my head no. I told him not to cop out and find out what was really wrong with me. He looked at me and wrote out a prescription for Prozac. This made me angry. I said to him "If you are uncomfortable with me being upset at being ill then YOU need medication. I am having a normal reaction to a very abnormal situation. Dumping loads of seritonin into my brain will not change the fact that something is clearly wrong here." He's not my doctor anymore and while I now aknowledge that there is a CFIDS, I still feel that doctors view women as hysterical and I believe that some think we make up illnesses to get attention or that we blow things out of proportion. Hooray for the good doctors.

Hi Morgan! I'm so sorry you are having so much trouble. If it is hard for you to get out or you do not have a GNC close to you may I suggest an alternative? I use Netrition.com They have a variety of healthy shakes and I bet one that would suit you. I drink Egg White protein shakes daily and it seems to help quite a bit. This website has great prices and the delivery cost is always very low. Hang in there!!!!

My prayers are with you. I'm new to this website and forum but I feel connected already as I have never met others dealing with the same issues as I do. Call Portland and have someone see you. Do your best to insist on getting medical care that is competent. It took me months of being in 2 different hospitals to finally call the Mayo Clinic and make an appointment with a cardiologist there. I checked myself out of the hospital in my hometown and had my husband drive me 7 hours to Mayo. We went into debt and my husband took off many days until finally they fit me in and I was diagnosed properly with Dysautonomia. I was in a wheelchair and very ill. Find a good doctor!!! No matter what it takes. My very best to you and your family.

If you brush your teeth like I do, you lean over the sink. For me, leaning over even slightly in the morning makes me sick to my stomache. I've taken to sitting on the side of the tub and brushing. It has worked for me most of the time. Now I am gonna tell you that you are the first person I have met that has the lightning bugs also. I thought I was mental. I see them when I sneeze sometimes or when I am lightheaded or even when I am peeing. (sorry to be graphic). They also happen if I stand up too fast or cough too hard. Best of luck!

I constantly have ovarian cysts. Had a 15cm one removed 3 years ago along with one of my ovaries. I've always had cysts and irregular periods. Very painful when they occur. I take Darvocet for 2 days about 3 times a year(when I get a period). I also have Hashimoto's Thyroid disease. No idea if any of this is linked.

Hey Jaime, I hear you. I'm so impressed you are able to work. I miss working so much. So often I cannot drive so I'm basically stuck in the house with a teenage daughter that hates to help me out. I had no idea that anyone was going through this along with me. The only other person I know with this problem is my cardiologist and she functions fairly well. I'm so thankful I found this forum and website. I feel like I'm not alone. Take care and please post again. Foofie

I live in South Florida so I understand a bit. I've noticed that a ceiling fan helps cool down my bedroom quite a bit. It helps the A/C and does not cost a fortune to buy or run. Wish I had more suggestions. I'm also heat intolerant and I'm hoping to move when my daughter graduates high school in 2 years. The northern states are looking pretty good right about now.

I have so much trouble functioning in the mornings. I have no idea why this time of day seems to be the very hardest but it has been like this for me for the last 10 years.

Thank you so much for the welcome and the information Sophia. I'm going to keep an open mind when I see the pacemaker doctor and do my best to get as much info before I make any decision. I just have to say that this website has given me more information in 2 days than any doctor in the last 10 years. I actually felt relief reading the symptoms because sometimes I think I am just crazy. My husband knows I cannot function well in the morning and I had no idea that this was a common problem. I have one other question, sorry! Does anyone fly? I have not flown in 20 years but I need to in October. I may try to get an afternoon flight since I seem to do so much better at those times. Thanks, Foofie

Hi everyone! First I want to say that I am so glad I found this website. When a doctor at the Mayo Clinic explained my "rare heart disease" to me in 2003, he never used the word Dysautonomia. Then 2 days ago I was at my cardiologists office because I am very symptomatic and I heard the word. I've been told many times that I have a number of problems including CFIDS, orthostatic hypotension, Fibromyalgia, syncope....the list goes on and on but you get the idea. In addition I have Hashimoto's Thyroid disease and now I am insulin resistant. I take atenolol, synthroid and a glucophage. I have taken in the past Florinef. I just turned 40 this year and I'm basically getting annoyed with all of this passing out, dizzy spells and fatigue. So here is my question. Does anyone have a pacemaker or has anyone considered this as an option to regulate those terrible irregular heart beats? My atenolol doesn't always do the trick. I have an appointment with an electrocardiologist(not sure if that is right) in a week and I wanted some feedback. Thanks much, Foofie