Inflammation question

[born2swim]

So, my doctor did a bunch of blood work on me and found out that my sed rate is majorly elevated and is running more tests. So far, ANA is negative as are rheumatoid factors. I do have swollen joints, massive fatigue, and other "vague" symptoms. I do get a rash on my face, but with ANA being negative, she isn't thinking Lupus anymore.

She said that she wants to figure out where the inflammation is and I said, "Could it be my IC" and she said that she has not done blood work for inflammation related to IC. So, she is working me up as if there is some other source of inflammation.

My question... finally, I know... is whether or not we can see if our bladders are inflammed with blood work. Does IC present with inflammation indicators in the blood (like sed rate higher, C reactive protein, etc)?

Thanks as always for your valuable information!

[ICNDonna]

I don't know the answer, but be sure to let us know when you find out.

Hugs,
Donna

[leelee88]

This sounds like Fibro!!! I have an appointment in two weeks to be tested for this!! But my GYN and URO are convinced I hae it.. Everything you just described I have.. I am so tired all the time. My body hurts and I swell esp my fingers..

[corky48]

Hi I have had an elevated sed rate for two years and they have tested me for everything. This also was before my diagnosis with IC. Nothing was found. I am curious to see what your test show. Please share if you can.:confused:

[mary124]

I have to agree with Ronda it does sound like you might have Fibro, I don't have it but my sister does (she insists that I have it as well, but thats another story!!)
Let us know what you find out.

[Wolfe]

Alyssa, what a really great question! It makes perfect sense, and I look forward to whatever you find out. I hope you can share what your doc finds.

I was diagnosed with Fibro 18 years ago with the exact same symptoms you describe. I have to say that the Fibro is a lot easier to live with than IC, and the Fibro is actually manageable when the IC is behaving itself. And IF your bladder can tolerate antidepressants, the Fibro will probably be all the more manageable.

I wish you all the best!

[rupunzel]

I have heard that that the ANA test doesn't always show a positive when all the symptoms are there, which can be frustrating for many.

[SandyRN]

I get a rash on my face that looks just like the butterfly rash of Lupus! They tell me I don't have Lupus either and I HAVE had a postive ANA but the last few times it's been negative. I think we're mystery patients because I can't get the answer to my inflammation either. Does the rash on your face itch sometimes? I would sometimes get it on my chin as well and it would drive me crazy so that I would almost tear the skin off my chin!

I believe the bladder can produce a higher than normal sed rate but that's just my opinion. It seems logical that because it IS inflamed that it should set the sed rate off. I have a high sed rate more often than not and nobody knows what it's from unless I'm having a Crohn's attack, then we know for sure.

[born2swim]

Sandy, I get the rash on my face, but it is more like a blistering rash, rather than your typical rash. My skin is extremely photosensitive, but my face actually blisters in the sun. I used to get rashes (that itched) on my neck and jawline, but I was also on Retin-A Micro for acne (years and years ago). I haven't had that rash come back once I stopped the medication. I have never had my sed rate tested before, so we can't compare it to other tests... but they said anything under 20 is acceptable and I was in the 40's. That was enough inflammation for my internist to worry. She is checking for other things like C Reactive Protein too. She didn't know if IC could do that to the blood markers. She has IC patients and none of them have an elevated sed rate... just me. So, she wonders what it could be. I had some major stomach trauma (surgery in March even), so she wonders if that is what is going on. I have a Lap-band and have had complications and they were able to repair it, but my internist wonders if the inflammation markers are showing that my body isn't handling the band anymore. I just don't know though. She isn't one to blame weight loss surgery for undiagnosable problems. So... she is trying to figure out what is going on with my blood work.

[born2swim]

This sounds like Fibro!!! I have an appointment in two weeks to be tested for this!! But my GYN and URO are convinced I hae it.. Everything you just described I have.. I am so tired all the time. My body hurts and I swell esp my fingers..

Ronda, Mary, and Wolfe... I hope to God it isn't fibro! I know it's not a death sentence... but some doctors (too many actually) think that fibro is not a real disease... and then add to that the number of doctors that think IC is not a real disease... I worry that I wouldn't get taken seriously. What else do they do to check for fibro? My internist ran a few more tests to see where/why there is inflammation.

[leelee88]

I know what you mean.. I go next month to a Rheumatologist I am worried you know.. I am so scared he will just say Fibro is not real.. But I know what I am feeling.. And it is all over body pain and swelling.. And severe fatigue.

[born2swim]

Ronda, I'm sorry to hear you are pretty miserable :( I too am dealing with massive fatigue and that is so frustrating. I have swelling in my ankles, knees, and wrists. Primarily on the right side (odd right?). I have TMJ problems, dry mouth, dry eyes, sleep problems (if I do fall asleep, it is terrible quality... but then some days I cannot fall asleep until dawn). They checked my thyroid and it did show hypothyroidism, but then my doctor checked it again and it showed a normal thyroid (but then my total T3 was way too high... so she says that is indicative of hyperthyroidism). Go figure. So, they are trying to figure out what is wrong with me... and the meds that people use for fibro didn't work for me (I couldn't take the anti-depressants and the sleep aids didn't help me fall asleep or stay asleep). I am already on Lyrica and Ultram. So... who knows what they could even do if it is fibro. I am having terrible IC belly right now. I had to do a lot of driving the last 2 days. (6 hours each day). It's weird because I drink more when I travel (so I make sure my urine is dilute), but I get massive water retention and bloating... and I barely make urine. How does that work? Why when I travel??? Oh well. I am just really frustrated with things. I would say the lack of energy is my biggest complaint of all current problems. I can't even concentrate or focus on things!

[SandyRN]

I honestly believe many, if not all of us with IC, have some autoimmune responses that they've just not identified. There are so many symptoms that fit with autoimmune, and in my case I've had sores in my nose, on over 75% of my mouth at one time (they HURT), Crohn's Disease which IS autoimmune, fibro, rashes (some of them burn and hurt like you described), and so many other things that fit.

I recently saw a CEU show for healthcare workers that take the course for credits to keep their licenses up to date and it was on fibro. Not ONCE did these people say that they think it has an autoimmune factor and I really thought about writing the show and telling them that they left out the most important part of the mystery!!

If we were to take a poll of IC'ers we'd find a TON of people with other autoimmune issues, including thyroid problems.

What does it take for doctors to look at the obvious??!?!?

[born2swim]

Sandy, I do agree that there is an autoimmune link to IC. While I think there can be a physical insult (say chemicals or something). It seems that most have a problem within the bladder wall itself. They think that there is a mast cell problem within my bladder and as a result nerve problems. Oh well. I just want to feel better!

[Wolfe]

Okay, I've been at this too long to let anyone slide by and not take me serioulsy. I have unexplained rashes, fatigue when I try to digest food, and worse fatigue when I go to do an activity and didn't eat beforehand because eating would make me too tired for activity. I've even had days when I took an ambien when I wanted a pain pill, and now I'm acting goofy when I should just fall down and go to sleep. Scary. Try driving your husband to work on a day when you've taken the wrong pill because you can't find a pill that will let you rest enough to recognize the right pill to take. It's frightening!!!@

The scariest thing about Fibro is keeping your head on straight, if that's how you value your head. It's about being yourself. If your way was wiggly all along, you'll be at home in Fibro. You're up and down like a toaster on vitamins and treatments. THE BIG TEST is to push on your 18 tender points and see if it causes discomfort. I looked at that diagram of tenderpoints and almost fainted. I swore I'd sue any doc who wanted to touch them all. But they did, and then they made me stay the night at the sleep clinic. That's who diagnosed me with Fibromyalgia. Like IC and DEPRESSION, some chemcials are not being used in the body the way they should be, and that shows up when you try to sleep.

[Wolfe]

Sandy, some of that autiommune shows up in the stuff we don't get. I get odd, inexplicable rashes but can't remember ever having a cold or the flu. The women of my family before me had high cholesterol and high blood pressure. I'm on the flip side, plus Low thyroid.

There IS a pattern here, just not always with our families. We can spot patterns in each other. Here I am self-cathertizing and I haven't had a UTI for 20 years. I'm impressed by how tough we all are in ordinary "healthy" ways.

[Wolfe]

Ronda, your doctor's not believing in it does not make it unreal. My first doc told me I just needed to find a good church. I kid you not. But he was the same doc who showed my my elevated sed rate and titer levels. What did he want me to do with them?

I found my voice, that's what I did. I learned to say, "Well, if you can't help me, who can you send me to who can?" I learned to say, "I want a copy of these records so I can take them somewhere else."

I learned to go to the girls in the office who know what's going on everywhere and say, "I need your help." Explain what you don't understand and they can get you papers or get you someone to talk to. My last nurse brought my uro out of a procedure because I said, "At some point I want to talk to her about trying something with less of a kick." I meant next week. She was there in 10 minutes and stayed for 45. So anything is possible.

When my meds don't agree with me and I KNOW it, it's up to me to be heard as soon as possible, not keep taking a hurtful med.

We're coming out of here stronger women. Now my husband lets me talk to his doctors. He knows I'll have researched and I'll have questions. We must be some of the smartest women around. So don't give up.

[ngazerro]

It seems like a lot of us are struggling to find out our true dx. I have fibro with all the tender points. I have a low sed rate and a negative ana. My rheumy agrees with the fibro dx, but he does not like my Reynauds and other problems. He is sending me to a specialist to figure out what is going on with me. Hopefully it is all just Fibro related...

Wolfe,

I can relate so much. My fibro is always worse when I don't sleep well. The fog is a killer sometimes. So days I feel like I can do anything, other days it hits me like a ton of bricks.

Rhonda,

I hope they find out what is wrong. Fibro is treatable and there are plenty of doctors whom will help you.
:smile tee

[Wolfe]

Fibro is treatable? I'm wondering what your doc is going to do for you if you secure that Fibro dx. Because I've had it for 20 years and everyone just wants to put me on antidepressants. Which help greatly, and I'd love to be able to take. But my bladder won't let me.

I consider Fibro the lesser of several diagnoses because it's the easiest to live with and not a degenerative condition. Muscle relaxers and pain pills help too, but isn't that treating the symptoms and not the condition? To the best of my understanding, Fibro is a chemical brain imbalance (hence no sleep and the false pain signals and depression) that can be treated the same way depression can: SSRIs, bless 'em! Unless you have IC. IC doesn't like SSRIs very much.

I know Lyrica, and soon Cymbalta, will be the only FDA-approved Fibro drugs, but that doesn't necessarily work for someone with multiple diagnoses. Honestly, the easiest way for me to get back to a semi-normal life (meaning living with only one condition, Fibro), would be to wave a magic wand and make my bladder disappear. I could have my strength and energy back without having to do DMSO to get them.

[ngazerro]

Wolfe,

Yes, my doctors are secure with their fibro dx. They not sure if I have something else along with it. Yes, fibro is treatable just like IC, but not curable. I do not take any anti depressant. I have been able to control most of my fibro with exercise and muscle relaxers. There are days when I have bad days, but I try to listen to my body and rest. Your right that fibro is not degenerative condition so there are ways to manage it. Diet helps also, I know when I don't eat a lot of flour or sugar my fibro is better.

Since I do have relief from my bladder my fibro is not as defeating.
Hope you find so relief with your bladder.