New kind of flare for me - Pyridium is useless!?

[DetroitMel]

Hi all - I've been perusing these boards for a while now, but have a question about my current flare (which is STRESSING me out) so I decided to post. I'm 25 years old and was diagnosed about a year ago (but I know I have had IC for at least 5 years - maybe even since I was a kid). My flares have always come hard and fast - severe pain (burning and frequency - mostly urethral) and lasted between 3-5 days. I take ultracet when I get them and mostly it just knocks me out, but at least the pain goes away! I have been in this last "flare" for almost a month. The pain isn't nearly so bad, but I feel like it's getting worse, not better. Almost nonstop urethra pain (the burning) and bladder pain as it gets fuller and fuller. My urogyn gave me Pyridium about 5 days ago, and other than turning my pee orange, it hasn't stopped any of the pain ... They ruled out any infection (they know me, and they know what they're doing - they're great!) But this is the first time I've had pain that I haven't been able to make go away, and I'm finding it very stressful and hard to deal with. The pain isn't bad enough for me to take the ultracet (when I take it I have to be at home because I know it's going to knock me out!)
Right now I'm thankful that it's not debilitating (although it is making me extremely grouchy) - but I have a bad fear that it just may never go away ...
Any thoughts would be greatly appreciated!

MelissaMc

[vm]

Pyridium doesn't help me much in a flare... :( It barely takes the edge off. It is strange b/c when I have an actual infection, it almost takes the discomfort completely away.... I don't get it.

Sorry this flare has lasted so long.... :( Have you eaten anything different this past month or are you under any unusual stress?

[Katrina]

For me I usually do a multiple of things that help only a little when I flare...together they add up to actual help. I know what you mean ...sometimes that strong pain med means sleeping all day...so not always the option you want. I so hope you feel better soon and your flare ends.

C Pain Relief Methods (This list put together by Katrina) Remember I am not a doctor and you should always check with your doc before trying theese. Note that it may take cobining a few of theese to get the help you need.

This list is for when you are already in pain


• Ice/Cold (I believe alternating between hot and cold is best)
o Ice packs
o Ice
o Cold spray water
o In a water bottle
• Drinking almond milk
• Drinking baking soda and water mix or alka selser (about 1 teaspoon baking soda per glass)
Taking alkaselser Gold
• Herbs
o Marshmallow root (althaea officinalis) helps sooth irritation and inflammation due
o Licorice (glycyrrhiza glabra and g. uralensis) good for inflammation and anti allergic but should only be used short term
o Uva Ursi (arctostaphylos uva-ursi) is an antiseptic of the urinary track also used as a diuretic, also for inflammation…also only for short term use
o Black Cohosh (cimicifuga racemosa) not good for me since has similar effects to the hormone estrogen. Is used as a sedative and to relieve menstrual cramps. May have anti inflammatory effects. Avoid large doses.
o Catnip (nepeta cataria) eases menstrual pain, soothes the nerves, and as a sleep aid.
o Chamomile (Matricaria chamomilla) mild sedative, creduces inflammation, relieve menstrual cramps, http://www.ic-network.com/cgi-bin/ustorekeeper.pl?command=goto&file=Foods-Tea.html
• cornsilk tablets are unreal!!!!!
• Drinking a burger king milkshake
• Resting/relaxing (some goes as far as to say laying down….at times I could only lay on my side)
• Acupuncture
• aroma therapy (either in a warm wash cloth across face, in a bath, inhaled from a bowl of steamy water, vaporized on an oil burner, sometimes candles, applied to the skin, or taken orally)
o almond oil
o lavender
o lemons oranges
o all essential oils
o honey
• reflexology
• physical therapy
using a donut pillow
• Yoga mine see , ICN: (http://www.ic-network.com/shop/)
• Prilosec OTC or something...not so much for pain but because it is newly non prescription acid reducer
• Water (drinking plenty of water helps with burning pain and helps dilute urine so that it is less harmful to the bladder wall
• TENS unit Ask your doctor for a TENS unit. A TENS unit is believed to work by providing another source of stimulation to "divert" the brain from paying attention to your bladder. It's based on the spinal gate theory. Some patients find TENS very helpful while driving, or in situations when a pain medication isn't appropriate.
• Migraine Ice Patches
• Tylenol with 4 Prelief (many non prescription meds can hurt the bladder….be careful and watch out for what bothers you) http://www.ic-network.com/handbook/nerve.html
• Topical analgesic…Menthol example ICE Blue Gel
• Heat
o Thermal Care Heat wraps
o Heating pad (http://www.ic-network.com/shop/)
o Thermal care adhesive body warmer (http://www.ic-network.com/shop/)
o Spraying heated water
o a microwaveable pad (http://www.ic-network.com/shop/)
one of hubby's tube socks filled with uncooked rice. I just microwave it for about a minute and it's pretty hot. It's pretty flexible if you're trying to heat in between your legs.
• Extra Prelief (http://www.ic-network.com/handbook/prelieffactsheet.html)
• Taking a shower or Tums if your desperate
• Warm Baths (NOT HOT!!!!) No bubble bath or strong soaps, please! Soft soaps, perfumed soaps, bath salts & bubble baths can be very irritating to an IC patient. However, you can put baking soda in the tub for extra comfort. SITZ Baths Definition: A sitz bath (also called a hip bath) is a type of bath in which only the hips and buttocks are soaked in water or saline solution. Its name comes from the German verb "sitzen," meaning "to sit." I recommend: (a tub divided into two …one half is filled with hot water and the other cold. With part of the body on one side and than switching and back again in quick succession) Recommended 3 times a day for 20 min each
• Foot baths
• Visualization [relax your mind. Make sure you are warm and comfortable, and practice deep long breathing, concentrate on the rhythm of your breathing, as you breath imagine the air going in and out of the painful area (such as the bladder), As you inhale, imagine a warm glow healing the pain, and as you exhale, imagine the pain being expelled. Next imagine your pain as a red ball, now take that wipe it with your washcloth, as you wipe the ball gets lighter and lighter in color, keep whipping until the ball is white.] That was 2 examples do what suits you best.
• Trying things to distract you
o Listening to music
o Watching a movie or TV (some choose to have tapes ready for late night flares)
o Reading
o work on a craft or project
o spending time online
o writing letters
o Working around the house (Do what feels comfortable to you. Don't push it.)
o Being constructive and helping others
• Venting here or to friends
• Hugs
•
• Praying
• Staying positive….believe the pain will end
• Meditating (http://www.ic-network.com/handbook/meditation.html)
• Ask for help if you need it (family, friends, doctors)
• Instillations (http://www.ic-network.com/handbook/instill.html)
o DMSO
o Heparin
o Marcaine
• AZO for Urinary Pain Relief or URISTAT
• Ask for a foot message from your spouse or partner (actually I think it is the receiving one that helps with the pain :)
• Pain meds patch (such as fentanyl)
• Pain meds oral (Remember, the earlier you catch a flare and pain, the easier it is to stop and the less medication it can take to stop it. So, don't wait until you are crying and desperate... because that allows that pain cycle to get firmly started. Try to catch in early!) (http://www.ic-network.com/handbook/painmed.html)
o Oxycontin (Pain med’s are recommendations from other ICers)
o Pyrradium
o Perocets
o Klonopins
o Neurontin
o Codein
• Cold water in a balloon in vagina
• Taking slow deep breaths/other breathing therapies (http://www.ic-network.com/handbook/breathing.html)
• Practice relaxing the muscles near the bladder
• Put some work into lessoning your stress
o Use art to help visualize and express your stress…you can even use it to visualize and than erase your pain
o Spend time with your pet!!
o Play with your children or with children (if you have none of your own)
o Sing (you don’t have to let anyone hear you)
o Listen to a guided relaxation audio tape to relax your body. Commonly available at book stores, we recommend the tapes by Potential's Unlimited (Barry Konicov). If you can't find those, try the Health Journey's series of tapes. [http://www.ic-network.com/shop/]


NOTE: AS WITH ANYTHING BECAREFUL….AND IN RISKY THINGS ASK YOUR DOCTOR BEFORE TRYING NEW PAIN METHODS!!!!!

:grouphug::kiss:

[Dixiefireball]

:hi: and :welcome: to the ICN family
i'm so sorry you are flaring right now have you been checked for a UTI? that is what it sounds like to me. I can't take Pyridium.

try some heat or ice for the pain take the pain medicine you have to and relax.
try drinking a glass full of 1 tsp of baking soda to an eight oz glass of water.
call your doctor and get in to get that urine checked. ASAP
if a uti goes untreated the pain will get wrose.

check out www.ic-network.com/handbook to see other treatments and the IC diet which may also help you.

sending you hugs and prayers Please let us know how you are.
Rhonda

[DetroitMel]

I've been reading up on stress causing flares (I hadn't really thought about that) - and I think that has a lot to do with this prolonged one. I work full time at a pretty demanding job, am in graduate school (7 credits this semester), am in the process of buying a new house with my fiance (we close in 6 days), am planning a wedding (June 4), and dealing with a number of different things that have really worn me out over the past month or so. That might explain why I just can't kick this flare - I haven't had even a minute to myself to just relax in a while. I'll work on that this weekend (while I'm studying for a Monday night midterm!)


Thanks for the tips on coping - what a wonderful and extensive list! I printed it out for future reference. When I get home tonight I'll definitely try the baking soda in water - hopefully that will give me a little relief.

[vm]

If I was under all that stress I would flare up - and I don't flare that often anymore. I hope you find some good relaxation time this weekend - hunker down in some flannel jammies with a good book or a feel good movie. :)

[Myli]

Do you think you could possibly put yourself under more stress? :yikes: :lmao: Well, for me, stress is such a trigger for flares, I have flared within minutes of a really stressful situation. I am now trying to avoid stress as much as possible. And when I do get stressed, I try to remove myself and start flare avoidance asap. My best advice is to get to work on flares the second you think one is coming on.

That being a bit late for you now, my coping with flares is to use ice, I basically sit on my ice bag with it between my legs, take uristat (that is in addition to the prescription one I have), take more Prelief, stop wearing undies, push fluids, stop eating anything that could possibly irritate and sit in a warm bath from time to time. I can't lie down during a flare, so instead I sit in front of the computers and play games, hit the boards, surf, research and try to distract myself on the internet.

Oh, and my newest is to come here and do a search, if I am thinking of taking a new otc med for some reason. Like the cold I have now, I didn't do that and took sudafed. :yikes: This has turned out to be a bad thing and I am trying to head the flare off using the coping strategy above. So far, only real symptom is warmer than normal urine which usually is a precursor and a small amount of discomfort. It's been two days since I took it and the flare keeps creeping back. /sigh

So far, my flares have always come to an end, some sooner, some later. Very likely, so will yours. I know how hard it is to be cheerful or upbeat and hopeful during a flare. I get very grumpy, somewhat depressed. That is one of the reasons I am finally really working on early prevention. Before, I would wait to see if the symptoms or pain would continue, now I don't wait at all.

I hope you are feeling better very soon!!

:grouphug:
Myli

[Sarojini]

I agree -- stress is one of my number one triggers!! I think you'll find many ICers say the same thing. I hope you are able to take some time for yourself this weekend and in the coming weeks -- if you have to, pencil it in on your calendar or put it on your Palm, but just do it. Take a long hot bath if you can, treat yourself to a little spa day at home, lounge in bed for a couple extra hours with lots of pillows and a bunch of mindless fashion magazines, read a good book, cook your favorite foods... whatever your favorite way to relax is, just do it :) I think it will help your flare and your mental state and help you gain a better perspective on things :grouphug:

[DetroitMel]

What a great weekend. Despite having to study, I slept a LOT, watched some good old movies (Father of the Bride was on!), and drank lots of chammomile and marshmallow root tea. While it was hard for me to stay home and relax rather than run errands, visit friends, CLEAN, etc., it's amazing to me how much better I feel this morning. Still not 100%, but I'm in a much better mood for sure. Thanks for all your kind words - they really helped! Now I just have to get through this exam tonight and I'll be scott free!

[hglsbabe]

Sorry you are in so much pain. Been there. Try Proced/d it has four medications in it. I use it everyday and it works. Drink lots of water and try taking Vicodin ES in brand form. Also very important realize and accept the fact that you are not the same person anymore. Know that your body reacts differently to stress now than it did before. Force yourself not to care as much about certain things. You may not be able to control certain things in everyday life, but you can control how you react to them.

I had to force myself to learn to step back from it. I stop tightening my pelvic area and just relax. Good Luck.
Heather

[vm]

I am glad your restful weekend helped! :)

[Joyaur]

Try Prelief when you are a flare..really helps me...i can't take the purple pill it makes me very ill...

[stacey79]

I'm glad you are feeling somewhat better Melissa. I, too, am 25. When my IC symptoms started recurring again was when I was stressed out in graduate schoool.

Prelief is a good lifesaver. I know you've gotten a lot of suggestions and I can't really add to them. Heat has been my best friend as well. As far as Pyridium goes, don't give up completely on it. If you ever have an infection it may help with that. Like some of the others have said, it doesn't help my flares, but when I have a UTI, it really comes in handy.

Hang in there! Hopefully you can get at least a little break from your studies over the holiday! :)

[DetroitMel]

Thanks Stacey!

I have come to learn that Prelief really does work well. And thankfully I'm feeling much better than I was a few weeks ago - I even had a big old latte from Starbucks on Monday without any pain - :woohoo:

I am taking a BIG break from school/work this weekend and spending the weekend in New York with a girlfriend - can't wait!!!!! I know I'll have a LOT waiting for me when I come back next week (like TWO term papers to write in about 10 days) but I'm going to try my best to forget about all that and just relax and have fun!

Have a great weekend!

Mel

[stacey79]

Hey, Melissa. I'm glad you are getting a break. Have a wonderful time on your trip! :) You are welcome to e-mail or message me through the boards any time.

Enjoy yourself and forget about the term papers for now! :)

[shennan]

my uro told me to buy arnica cream/gel for vulva burning.
i bought the ointment.

it helps the bruning....

good luck.

feel better....
shenna
:)