Jillybeanbme

Wareagle, You live by Pensacola don't you? You DO NOT have to have a referral to the GI Docs at the Medical Center Clinic, unless your insurance requires you to have a referral. Dr. Ronald Powell there has experience with dysautonomia patients. Jill

Nina, My doctor switched me from Celexa to Cymbalta and I Love It!!! I have noticed a wonderful difference in how I feel with my POTS and my Fibromyalgia. I only take 30mg it has made enough of a difference that I have been able to cut back on my Lodine I take for my Fibro to once a day except of course when it's raining or about to rain I haven't really noticed it affecting my IBS, but then again I have been making a conscious effort to eliminate bread and anything greasy or fried. Good Luck!!! Jill

Jacquie, I get shortness of breath on a daily basis. It gets very embarrassing when it happens while I'm working and people can see that my breathing is very short, rapid shallow breathes. Then there are times my Fibromyalgia kicks in on the game with the muscles around my rib cage and it feels like someone is squeezing the breath out of me and I can't get a deep enough breath to keep breathing!!! The only thing that works for me is closing my eyes and concentrating on my breathing, making sure it's as deep as I can breathes, in through my nose & out through my mouth until I feel like I have it back under control. Good Luck!!! Jill

I got Mono for the first time when I was 5 yrs old. I just recently got it again and it kicked my butt!!! I was out of work for over 7 weeks. I slept so much that one day just blurred into the next. About the only thing it was good for was the 10lbs I lost from not having an appetite. I tried to look up info about mono, the most I could find said that once you have mono the virus never leaves your body and anytime your immune system is down or compromised it can come back. That is so NOT comforting to know!!! Jill

Hi Amy, I'm sorry you're not feeling well. I can completely relate. On Oct 17th my 5yr old & I both went to the doctor for what I thought was just Strep Throat. Well, that was the case for my son, but I had Mono also and I still have not been able to go back to work. I feel like I'm starting to get some energy back but if I do something then I'm sleeping all day the next day because it wipes me out! As for your cruise, do just what you said RELAX!!! Don't do shore excursions. They can be stressfull. Stay on the boat and enjoy everything the boat has to offer. And like Steph said Don't Drink The Water!!!! Drink Bottle Water Only!!!! You know your body best...listen to it! Good luck & have fun, Jill

Linda, I have Fibro and can totally relate to your leg pain & many other pains; which can sometimes feel like my body has been ran over by a very large truck!! My dysautonomia doctor sent me to Rheumatology for what he felt like was Fibro. The Rheum doc said yes and if I was not currently on some of the meds for my dysautonomia, I would have had all 18 trigger points. My started me out on just a low dose of NSAID's. Can you tell he's a little on the conservative side? By 3pm my AM dose had work its way out of my system and my body hurt in more places than before!!! He increased the dose and it helps some. Then, thanks to everyday stress of job, home & hurricanes (the change in barometric pressure severely affects me!) I had a bad Fibro flare, just lifting my leg to step up the curb on to the sidewalk brought me to tears. My whole body hurt tremendously. I got in to see my Rheum, he put me on bed rest for the weekend with taking muscle relaxers (Flexeril) 3x's a day, then 1 nightly after that. I can not believe the difference it has made. I still have bad days every now & then, but at least they are not as intense. Now if they could come up with some thing to help the skin sensitivity. If someone breathes on my neck I just want to deck them!! And buying clothes is always fun. I walk around stores feeling the material of everything to see if I will be able to tolerate the sensation. You just have to laugh and keep going. I hope you find relief soon!! Jill

Lisa, Topamax can, in some people, cause Acute Angle Closure Glaucoma. I hope you had an eye exam after your incident with the blurry vision. Here is a link to an article about it on the American Academy of Ophthalmology web site. It's the last article on the page. http://www.aao.org/education/sit_glaucoma/20050401.cfm Take care, Jill

Chad, You are in an excellent postition, with the contacts in your life, to bring the attention to our disorder that we have not been able to obtain. I wish you much success with your band and look forward to your posting. I have an appt. Thursday w/ my dysautonomia doctor, who also suffers from it as well, I will ask him if he has heard anything. Take Care, Jill

Melly, They didn't send you to a psychologist because of the 'crazy' thing we all go through. In some states it's part of the procedure. My Mom was recently approved for disability in the state of Alabama and she had to see a psycologist. She has multiple health problems but not dysautonomia. She had even been told to bring a friend and a family member for the psychologist to speak to as well but he did not want to talk to them. The visit to the psychologist I think is really to weed out those who are 'malingering'(faking it). She recieved her first check 2 weeks before she recieved her letter stating she was approved because they come from two different places. Good luck to you!!! Jill

HEY OPUS!!! I'm so glad to hear all is well for you...I was worried. I was over your way for work last month; the beach there looks about as bad as our beach does. What Ivan didn't destroy, Dennis and Katrina did. Congratulations on your new job...that's great!! Stay well, Jill

Sallyann, I get pain that starts at the base of my scull (sometimes as highup as the back of my ears) and radiates down my neck and trhough my shoulders. My dysautonomia doctor and my fibromyalgia doctor both call it the 'clothes hanger effect'. Bascially, the pain comes from the lack of blood flow to those muscles and tendons. When done properly, a deep tissue massage does help to increase the blood flow and temporarly relieve the pain. Good luck, Jill

Opus, I know the area you live in was hit again, I just wanted to make sure you are okay. We did fine, we went to stay with family in North Alabama. But still the same, the stress of it all does a number on your body. I feel like I have been ran over by a buldozer!! Jill

Poorbear, I'm very sorry to hear about your friends. I live in Pensacola and the reports we are seeing on local channels are not good. The devestation over there is far worse than what we went through last year with Ivan. My prayers are with you and everyone else with family and friends in that area. God Bless, Jill

Michelle, Have you thought about approaching any of the pharmaceutical companies? Not only for donations in producing the brochures but also for the possibility of their drug rep's distributing them to physician's they call on. Everyone knows those of us with dysautonomia support all of the pharmaceutical companies with the multiple medications we take!! Just a thought? Jill

My name is Jill and my best friend of 23 years gave me the nickname Jillybean when we were in middle school. I added the 'bme' as to say 'That's Me!'