Please tell me if this is a common symptom

[tbent14]

Hi all,
I am in the early stages of trying to get a diagnosis but my doctor suspects IC based on symptoms. He has done nothing more than take a urine sample at this point which was 100% clean. I am about 20 days into a 30 day treatment of Macrobid. This offered some minor relief until a flare up this week has put me in the bed.

My question for this community is do any of you suffer from severe flu like aches and chills during a flare up? I don't seem to be able to find that as a common symptom and if it is not, I feel like I really need to push harder for a better diagnosis. My typical IC symptoms are actully fairly mild (urgency-without increased frequency, pain in my lower back, constant feeling of bladder irritation) but the body aches are dibilitating. Can this really be caused by IC?

My doctor seems to want to follow a traditional protocol of trying med after med and if one works then he is right. Genius! I am feeling a lot of frustration trying to convince him to run some test to confirm a diagnosis. I don't know how to convince him to proceed with any urgency. If any of you have any advise in that regard, I would welcome it.

Really looking forward to hearing from you guys. Thanks!

Tammy

[ICNDonna]

First I'd like to say :welcome: to the IC Network.

Is the doctor you are talking about a urologist? If not, I suggest you see one --- they are the specialty who most often deal with IC. If you are already seeing a urologist, you might want to think about seeing a different one for a second opinion. No ethical doctor will object to this and it doesn't mean you have to change doctors.

The discomfort of interstitial cystitis can cause different reactions in different people so your symptoms could be IC. You might want to try the IC diet to see if it helps you feel better. You'll find diet information if you scroll to the top of this page and click on "Diet."

I think my worst time with IC was that time before diagnosis; once I found out what is wrong, I was able to take steps to make myself feel better.

Donna

[SharonA]

:welcome:

There are some here who report having fever, chills when they are flaring. Hopefully, they will come by and post their experiences.

My first reaction to your post was to suggest that, if the doctor you are seeing now will not do the tests that you want done, then you should consider seeing a doctor who will. I felt it absolutely necessary to find out for sure what was causing my symptoms.

[tbent14]

Thanks ladies. Yes the doctor I am seeing is a urologist. He wants me to finish the 30 day therapy of Macrobid before returning to see him. I feel quite certain the next visit will be little more then me telling him that things are not better and only THEN will he plan for the next step. I've made a call to his office in an attempt to circumvent that process as it is simply delaying getting me healthy again.

I am certain he will eventually run some tests but it seems to me now that for him the more office visits he can drag me to the better (for his wallet). Perhaps he and I have conflicting goals and I should change doctors.
One thing I did notice on my first visit to this doctor was the median age of his patients. I am 38 and without exception, the other patients were a minimum of 30 years older than me. Would this possibly suggest he focuses on a more specific type of urological issues? I hate to make assumptions but I also do not want to waste any time in getting a grip on this.

I've read so much information that at this point I am a bit more confused than when I started. Is there a definitive test to confirm IC? Are there any conditions that are commonly misdiagnosed as IC? Lots of questions.

[Briza]

It is not unusual to see most patients in a uro's office much older than you....a great majority of uro's patients are male and dealing with prostate issues.. and it is very common that their wives accompany them to the appts (they may not go otherwise....men can be quite ornery about going to the dr ;)) So no, in that regard it is not unusual to be the youngest one in the waiting room. I have not seen an IC specialist, but have heard from other members here that often in uro IC speciaist offices that there are mainly female patients. However, you do not have to see a dr who promotes himself/herself as an IC specialist. I was dxd by a female uro who had mainly 30 yr older than me male patients....mainly prostate issues like I said. After diagnosis I returned to my gyn and he has been my IC treatment dr since. He is by no means an IC specialist, but he is MY IC specialist....he works with me and is willing to take suggestions and input from me on treatment options I would like to try. It has worked out very well for me. Best of luck to you...and yes, as the others said, you are not tied to this uro and you CAN seek second and third opinions from both uros and gyns....and then you will be able to compare how each dr would treat a new IC patient...and if it would be a two way street allowing input from you on how your treatment goes.

[izazen]

That seem like an awfully long protocol for Macrobid.

When I have a really terrible UTI, I only get a 3 day regime which totally knocks it out but then I don't have all your symptoms.

[Mimi7]

Hi Tammy,

Welcome to the forum. Just wanted you to know that I recently asked the same question about symptoms. I have only been diagnosed with IC for the past 3 years, but have had the symptoms for almost 30 years. Just recovering from a bout of chills, aches and low grade fever associated with bladder problems. My theory is that the bladder inflammation makes one feel sick all over (Just a theory). May you feel better with each passing day.

Blessings, Mimi

[VickiB]

I also experience a low grade fever & chills when my IC flares, though not the flu-like aches. My aches are very much localized in the bladder/urethra area.

This place where you're at, before diagnosis, is really hard. It's not uncommon to be frustrated with the length of time, trying this & that, and variety of tests & procedures that lead to no clear answer. Pretty typical when IC is the culprit! Sometimes IC is diagnosed by exclusion after everything is is tried/looked at/tested for/poked & prodded. Seems each doctor has their own individual way of going about this and timetable to get it done in. All I can say is if what your's is putting you through doesn't seem right, speak to them about it, and then go with your gut feeling. It's not uncommon to have to change doctors for a better fit, and a second opinion never hurts!

Sorry you're going through this!

Vicki

[nottoc4]

I have never had the aches and chills like you describe. I take 100 mg of Macrobid nightly to prevent constant UTI's.I went to Urologist for 2 1/2 years and he only diagnosed me as Overactive bladder and chronic cistitis and had me on meds for OAB even though they didn't help much. I fianlly referred myself to a GYN that specializes in Urinary problems too and he diagnosed me and treats me. Thank God I found him. If this is not the right Dr. for you,find another.

[tbent14]

Thanks everyone. It makes me feel a bit better to hear that at least a few others suffer from the same symptoms(although sorry to hear that for you). I have been a bit concerned that this symptom might be indicative of something else that the doctor is not looking for because he is fixed on the IC diagnosis.

I have decided that I would like to interview a few doctors before I proceed any further. I need to feel more involved in my treatment and I know there is a doctor out there that will be a better fit for me. I don't do well passively handling problems, I like to tackle them head on. I am sure I can find a doctor that is willing to get on board and work with me to find a way to manage this.

[nottoc4]

Good for you and good luck.Jo