Newly diagnosed has many questions.

[newsgirl]

Hi everyone. I wanted to compare symptoms to see if what I'm feeling is an IC flare or not. I had a cystoscopy in March, and my doctor confirmed IC. I am on Elmiron, Hydroxyzine at night, protonix for acid reflux and my prelief before meals.
Since being diagosed, I hardly ever had urgency or bladder pain anymore. I would get some pressure in my abdomen like I'm having a bladder infection, but that's about it. That's not fun, but thank God that's all.

This is what I want to know: It doesn't happen everyday, but, it's like a heaviness comes over me. My limbs feel heavy, and I feel sick like I have the flu. I feel like I need to nap. Is this psychological, fibromyalgia, chronic fatigue syndrome? Or, am I just tired from working, having kids etc.

This is the other stuff that happens to me. This doesn't happen at the same time the other symptoms happen. I get a pain in my back where my kidneys are. I feel like I have to move my bowels, and I feel sick. My doctor checked me for kidney stones. He found some on the left side, but not on the right side where the pain is. My urologist sent me to a GI thinking it's irritable bowel and put me on Bentyl. I feel worse since taking Bentyl.

Do any of these things sound familiar to anyone? Do IC patients ever feel like this? I am 36 years old and have always felt good. Now I feel like a head- case/hypochondriac.

I've been on Elmiron for 3 months, why do I all of a sudden feel worse?
Thanks for any input. :)

[janelle77362]

:hi: and :welcome:
I have had IC for about 4 years now and have back pain in what seems to be the kidney area frequently. I had a renal ultrasound to make sure that nothing was wrong with my kidneys and my uro determined it was just normal IC back pain. You wouldn't think that pain in your bladder would cause pain in your lower back but it does. To me it feels like a sharp stabbing pain instead of the achy pain I usually feel in my bladder. I would recommend getting a renal ultrasound just to be safe but back pain is pretty normal.

[ICNDonna]

Have you had a complete physical with blood work recently? If not, I think it would be a good idea. That heavy, leaden feeling could be from a dietary deficiency. You really should have it checked out. I have never heard of that as an IC symptom.

Donna

[newsgirl]

Thank you both for answering me. I did have an ultrasound which determined the kidney stones. I'm assuming it was a renal unltrasound. I will ask though. Thank you for letting me know that the back pain is part of IC. Also, thanks for letting me know that the heavy fatigue/sick feeling is not part of IC. As you know, IC goes hand in hand with a number of conditions so I thought...now what? Chronic fatigue syndrome, lupus, ibs etc.!?

When you get the back pain, do you get a belly ache? That's why I was sure it was kidney stones. I did have blood work, but I don't know if they tested me for a deficiency. I will ask.

2 Last questions: What do you do for the back pain? Heat? Also, what do you do for the bladder flare? I can't take any anti-inflammatories being on Elmiron. I don't want to take percocet's or something like that, because It will make me groggy. How can I work like that? So, I take tylenol. When I get the flare, the pain isn't so bad, I just feel sick like I need to lay down.

Thanks for listening. I don't think my doctor has a handle on this condition.

All my love,
Allison

[janelle77362]

Different things work for different people for back pain. I carry around a small pillow I was given in the hospital when I had my son. It at least relieves some pressure when I am sitting at my desk or on the couch at home. I also take Ultracet which is non-narcotic. It doesn't make you loopy but it doesn't help as much as a narcotic pain reliever would. I forgot to mention something about the weakness and exhaustion. It sounds like it could be anemia. I have struggled with anemia almost my entire life but that is not a symptom of IC. Donna is right you should have your doctor do a blood test. If it is anemia it is easily resolved by taking iron supplements on a daily basis. You can also try taking vitamins on a daily basis in the meantime to see if that helps you. Try to avoid ones that are high in vitamin C. Those tend to bother me.
Good Luck~

[newsgirl]

I am excited to hear about the Utracet! I need to find a multi-vitamin. I think the multi-vitamin I tried this week caused the flare. Thank you both for all of your advice and for caring. I will aslo ask about the blood work.
Take care.

[Gayle123]

Allison, have you ever had any blood work done testing your thyroid for problems? They can go hand in hand with lots of other disorders.

[newsgirl]

I did have blood work, but I'm not sure what was involved. I will ask the doctor about that. I recently had the 3 hour glucose test to see if it was blood sugar related.
I'm surprised to hear that no one feels weak or lethargic during a flare. The pain doesn't bother me as much as the urgency and the sick feeling.
What do you do during a flare?
Thanks for caring to respond. :)

[Gayle123]

I did have blood work, but I'm not sure what was involved. I will ask the doctor about that. I recently had the 3 hour glucose test to see if it was blood sugar related.
I'm surprised to hear that no one feels weak or lethargic during a flare. The pain doesn't bother me as much as the urgency and the sick feeling.
What do you do during a flare?
Thanks for caring to respond. :)

I have not been diagnosed with IC (or anything!) yet, I see a Uro on the 27th. I have hypothyroidism, and I know that it can cause many other problems when it is not properly treated. Your whole body's hormonal system is regulated by your thyroid gland, and it does not take a lot to make you feel bad when it's not in proper range. No matter what is wrong with one, it wouldn't hurt to have a thyroid panel ran to see how it looks.

I have read that Hypothyroidism is not uncommon in IC patients. And vice versa of course.

[janelle77362]

I do feel tired during a flare but that is probably because I am losing sleep due to pain and late night trips to the bathroom. :toilet: When I get a flare I take it easy and use heating pads, lots of showers, and take Pyrelle. If it gets really bad I'll see my uro so that I can get stronger pain meds to get me through. Otherwise I grin and bear it. :smile tee