potsgirl

You may have vulvodynia, which causes a lot of pain in and around the vagina. There's a lot of information on the Internet about it. I suffer from it, and will be coming to Phoenix soon to have a specialist do some tests for me. There are very few OB/GYN's who deal with it. Even the thought of using a tampon is excruciating! PM me if you want me info.

Cheers,

Jana

Hi Dani~

I agree with Reen. If you're not moving around much, pain in the leg can definitely be a sign of a blood clot, to put it in simpler terms. I would have them do a blood test for that, just to make sure. I had increasing pain in my chest and shortness of breath, and it turns out I have a blood clot in the right atrium of my heart. Otherwise, anemia comes to mind, but make sure your doctor doesn't blow you off and you get this checked out soon!

Cheers,

Jana

Hi Ken~

I'm so glad that you finally have an appointment at the Mayo Clinic next week. I personally have not heard anything about Dr. Singer, but I looked him up and his vita looks pretty impressive. His main area of study/interest is in autonomic dysfunction, so I think he'll be fine. I have had very few doctors at Mayo Clinic that have not been terrific. They even return my phone calls the same day...Good luck, and keep us updated.

Cheers,

Jana

Julie~

I had the same slap in the face, rude awakening just last week. I'll be 49 in March, and got my AARP invitation and couldn't believe their audacity. I have a WHOLE YEAR until I turn 50, darn it!

Cheers,

Jana

Thanks to everyone who contributed to this post. Very informative and I hope to find out more when I see a specialist in Phoenix on Feb 25th. If anyone is interested, PM me and I'll let you know what I find out.

Thanks again, and cheers!

Jana

For someone like me who can't tolerate the heat well at all, I suppose Tucson is not the best place to live. I moved from Iowa, where I couldn't tolerate the cold. I have been unable to acclimate to the heat here in the past seven years, I'm a huge fan of avoidance. It seems to me like I have a very small window of temperatures that I'm comfortable in....approximately 60 to 75 degrees. Now, where can I find a place like that to live in? Thank goodness for air conditioning and heaters!

Cheers,

Jana

I think that any exercise will probably help, but I have heard that you have to be careful with aquatic exercise. You can become much more tired than you realize, and when you get out of the pool, the exhaustion can be a surprise. I'm with some of the others - have someone with you while you're doing your exercises, or perhaps try a treadmill...Just be careful, and keep up the good work!

Dani,

I'm sending positive thoughts your way! Do you have a lawyer? I know that really helped me out when I went to court. I was approved for three years during my court session, at which time I will need to do a re-assessment. I also get assistance from my long-term disability from my job, which was with the county, and I have to re-apply every year for that. Just think positive thoughts, and if things don't go your way, you can always appeal.

Good luck and let us know!

Jana

- If you ever need someone to chat with, I'm close by and get up to Phoenix moderately often....

I had an upper GI about 6 months ago, and they diagnosed me with a small hiatal hernia and esophagitis. I take Prevacid now when it's acting up, and that seems to help. I still need to do a colonoscopy since I have issues in that area, too, but am procrastinating scheduling an appointment. I just have such a hard time swallowing all of the prep!

Hello All~

This is a sensitive topic and I hope nobody is offended by my question. No offense is intended. For the ladies out there, do any of you suffer from vaginal pain where there is no known cause? This is called 'vulvodynia', and it appears to be a nerve-related illness that there is no cure for - only treatment of symptoms - sound familiar? It can be constant or cyclical, and the pain can be excruciating. There are two main forms of the illness, as far as I know, but I'm seeing a specialist a week from Friday. Anybody else, or am I just really lucky?

Thanks,

Cheers and health,

Jana

I got bad headaches and nausea with it. For my small fiber neuropathy, I take Lyrica. But what gives me the most relief is oxycodone...I take it in the morning when my pain is the worst.

Marcia~

Usually you get a pacemaker if you have bradycardia and you have symptoms from it. Have your cardiologist do a cardiac monitor (Holter monitor) on you for a couple of days or a week. When I did it, they found that my heart rate was going into the low to mid 30s, and I was extremely fatigued all the time and either felt like fainting or actually fainted during some situations. They normally won't recommend a pacemaker unless your heart rate is in the 30s, or possibly low 40s. I know most cardio's don't seem to get too upset with a heart rate in the 50s, even though you may feel lousy.

The pacemaker did help me, and it's set so that my heart rate will not go under 60 beats per minute. Of course, all of this would be individualized for you. You can't do an MRI and you have to be patted down at the airports in security if you have one, but they're doing more of that now, anyway.

Good luck! Let me know what happens, and PM me if you have more questions.

Cheers,

Jana

I'm in the process from switching from Lyrica to Neurontin. I hope it works as well for me as it does for you, because Lyrica was very expensive and really didn't do much for my pain = I have small fiber neuropathy in my feet and hands. What is your dose?

Cheers,

Jana

Hi Dani~

I use Flonase and also Benadryl. I tend to use the Benadryl when I don't mind if I'm drowsy...like when I really need a nap. No problems with either one.

Jana

I was also diagnosed at Mayo with small fiber neuropathy after they tested some nerves around my ankle and calf. It started as burning in my feet, then pain progressed from my feet into my hands and wrists. It makes it very difficult to hold heavy things or open up things in the kitchen...Have you been checked for that? It can be caused by our autonomic dysfunction or other reasons.

Hope you feel better soon,

Jana

Why aren't they doing a 'real' tilt table test on you?

I don't have many problems flying, I just make sure to keep myself hydrated and get up to stretch my legs once or twice during the flight. You can contact the airlines and arrange a wheelchair to meet you at the gate, and they're pretty good about it. You may need to wait a little, and you're the last one off the plane, usually. Eat some salty snack while on the flight, and I think you'll be okay. Most likely you'll just be really tired when you get there. Plan to go one day early to rest before your appointments, and if you can afford it, stay at a hotel connected to the main clinic...it's worth it! I hope you have someone traveling with you?

Also, you'll be taken to the side at airport security and 'patted down' instead of going through the electronic device. It's really not a big deal. You do still have to put all of your belongings through the security scanner like usual.

Good luck!

j

Dear Bellamia~

I'm so sorry to hear that you're having so many problems at once. You've had a long, hard road that you've been on for way too long. I'm glad you're writing on the Forum again, and shoot me an email when you're up to it. I hope things have gotten a little better since you wrote this.

I'm sending positive thoughts and energy your way!

Cheers,

Jana

Hello! I am also from Tucson and go between Mayo Phoenix and some good cardio people here in town, along with a great internist and gastro doc. Please personal message me and I can give you their names, etc. Also, perhaps we could meet sometime and chat.

I have the same problems that you and giftcreations have. I don't feel like I'm having any problems, and then all of a sudden I need a root canal. I am waiting right now to get off my Coumadin so I can go and get 3 root canals and crowns done. I've been like this for a long time - all but the 6 teeth in my bottom front of my 22 teeth have crowns. Very expensive, too!

I was diagnosed with dilated cardiomyopathy of my left ventricle before I was diagnosed with POTS. I was in congestive heart failure at the same time, and had absolutely no energy. They put me on Coreg and Coumadin (since I also had atrial fib) and eventually my heart got better, but I still have problems with it. Currently I have a blood clot in my right atrium that we're treating. Have you have an echocardiogram? I would ask for that test, because it's one of the best to see what's really going on with your heart. Then they can treat whatever is going on appropriately and hopefully you'll feel better.

Good luck, and feel free to PM me if you have more questions. I think I got my dysautonomia diagnosis soon after my heart condition cleared up....

Cheers,

Jana

Some of you with resting heart rates in the 30s and 40s...have you been checked for bradycardia or other heart issues? When mine was in the 30s, I had cardiomyopathy and bradycardia and got a pacemaker. It has really helped with my energy (although it's still too low) and my heart issues.

I have a good friend that has similar issues to yours. The Viagra and other pills didn't work, but the shots did. He's very happy with the results, and you can start off with a low dosage and build up. I think you'd get used to the shot fairly quickly, I just had to inject myself for a couple of weeks to get my blood thinned out quickly, while taking Coumadin, and it really isn't that bad. Good luck!

jana

My resting heart rate used to be in the mid-thirties, but with a pacemaker, it won't go below 60.

Sophia,

I am just like you. I hit a wall hard and fast right about 5:45/6 pm, and there's nothing I can do about it. Then I'm up at 6 am, so I have to take a nap every day for about an hour. If I don't, I hit the wall earlier. I'm so tired of missing all of the dinners and events that happen after 5 pm. Sometimes taking one of my pain pills (Percocet) will give me a little energy, but I don't make it a habit.

Cheers All,

Jana