Mrs. Burschman

Thanks, Flop. You might have just saved me from an expensive and worthless doctor visit! Well, frankly, most of them ARE expensive and worthless, but I digress ... Amy

That's OK, Julie. Sounds like you know a lot more than 99 percent of doctors I've ever met! I really appreciate your thoughts. I have wondered about the mast cell thing, or autoimmune issues. It's so frustrating to not know what's going on. Maybe it wouldn't make any difference, but it sure couldn't hurt! Right now, it's likely that I'll just stick to the Paxil. I'm not thrilled about that. It has some side effects I don't like. But it does do a pretty good job of controlling my symptoms, as long as I don't get too hot, or overdo it ... you know the drill. Thanks again for your ideas! Amy

It stinks to get a diagnosis, but at the same time, it's nice to get a diagnosis. Welcome to the club! I hope the rest of your testing is tolerable. Good luck! Amy

One more thing: It seems that Paxil helps me by "calming down" my sympathetic nervous system. I would dearly love it if I could find another drug that did the same thing, so that I could reduce my Paxil dose. It has some icky side effects.

Here's an interesting tidbit from the study: "The sympathetic over-activity observed in the active phase of UC seems to play a crucial role in generating/sustaining the bowel inflammatory state giving the fact that the administration of a sympathoplegic drug, such as clonidine, was associated with a clinical amelioration of the disease whereas placebo was ineffective. ... In conclusion, our observations highlight the crucial role played by an enhanced sympathetic activity possibly in maintaining the inflammatory process of the gut. In this context, clonidine administration was found to reduce the abnormally increased sympathetic activity and improve clinically active UC."

That is interesting about his blood pressure. You wouldn't think that a drug meant to lower blood pressure would raise it in some people. We're just goofy, I guess! Although I don't know what type of POTS I have, I do know that I have sympathetic overactivation. I went to an expert on biofeedback a while back, and he could tell that was the case. I read an Italian study that found ulcerative colitis patients saw improvement in their disease with clonidine patches. I have a theory that both my colon and bladder inflammation problems might be linked to my overactive sympathetic nervous system. Neither are "typical" cases of ulcerative colitis or interstitial cystitis. I'd be curious to try clonidine to see if I see improvement in those symptoms. But I certainly don't need to lower my blood pressure, which is why I was asking. One of the last times I went to the doctor, it was 80 over 50.

I was wondering if anyone here who typically has low blood pressure has taken clonidine. I read a study about clonidine being used successfuly in ulcerative colitis patients, but I know it can lower blood pressure. Anyone have any experience with it? Thanks! Amy (Mrs. Burschman)

I'm totally feeling your pain right now. It should be easy to find doctors in Washington, D.C. HA! Nobody's taking new patients, or if they are, my insurance doesn't cover them. Very frustrating.

I wouldn't. That's what screwed up my lower back. I think it depends on the individual.

We have an elliptical, and I LOVE it. It's very low impact, and it's quiet, so I can watch TV when I use it (major benefit.) We did have a stationary bike, but I found it put too much pressure on my lower back and aggravated my SI joints. I have had treadmills, and they were fine, but noisy and harder on the knees.

Mine feed on itself. POTS gives me the physical symptoms of anxiety. Then I get anxious about it. Vicious circle. For me, the most effective means of dealing with it is to remind myself that just because my body feels "anxious" doesn't mean my mind has to be anxious.

Ramakentesh, Are autoinflammatory issues different than autoimmune issues? And do rheumatologists deal with the former, and immunologists the latter? Just trying to get some free education here.

Have the rheumatologists been helpful? Did they have any new ideas that you hadn't heard before? I really hate going to the doctor, but would if I thought he/she might have something useful to offer. Thanks!

I wish we could trade blood pressure points. Those who are high could give away some. Those who are low could get some. Then we'd all feel better!

Hi! I've been gone for a long time, so we've never met. Thanks for the introduction! Amy (Mrs. Burschman)

Thanks for stopping by! I've just returned after a long absence. It's nice to check in sometimes. It's such a comfort to know that you're all here! Amy (Mrs. Burschman)

Thanks for sharing! I think autoimmunity might be my problem, too. I also have PCOS, along with interstitial cystitis and ulcerative colitis. All are thought to be autoimmune issues. Now I just have to find a doctor who doesn't think I'm just crazy.

Amen. I've felt crappy for a few days, but is it just my norm a little worse, or swine flu? I'm not coughing, so I'm going with the former. But I don't know for sure! So annoying.

My advice: Find as small of an apartment as you can. You'll save money on rent, you'll save money on AC, and it will be faster to clean! Just make sure it has a tub, though!

I wouldn't be surprised. My autonomic nervous system is really funky. I had an ovarian cyst that ruptured, and the pain nearly caused me to have an autonomic meltdown. It took them four tries in the E.R. to find any blood pressure at all, and my arms and legs went numb. It was really freaky. I thought I was dying.

I definitely agree with the "check with your doctor" sentiment, because the odds of dying of flu are not zero, unfortunately.

Ouch! I wish I knew what to tell you. Do you have a doctor on call? Or does your insurance or local hospital have a nurse's line? I feel like the nurses lines have always given me pretty sound advice. Amy (Mrs. Burschman)

My poor husband. He was only parroting what they always say whenever there's some sort of flu outbreak: "If you feel sick, don't go to work." Does this annoy anyone else? If I didn't go to work every day I feel sick, I WOULDN'T EVER GO TO WORK. I guess it should be, "If you feel worse than your normal." Of course, not everyone has chronic illnesses. Off my soapbox now.

Not me.

Good for you! I, for one, am proud of you. The lack of air conditioning would have done me in within four hours.