Insomniac intro

[Magpie]

Hi :)

I'm new to the board. I thought I'd join up as here I am web-surfing at 4am in the morning because I'm afraid to go to bed.

I'm British, 41, a mother of one and a writer.

I have multiple chronic conditions (like so many here), but just at this moment the one I hate the most -- easily -- is the IC. I'm only recently diagnosed, but really I've had it for a long time, and I'm sure all the antibiotics I was prescribed for infections that tests later proved didn't exist haven't helped much in general.

I'm currently in a flare up that's lasted three weeks so far and is showing no sign of stopping. It is, I have to admit, entirely my own fault. I had a shameful moment and ate four Ferrero Rocher on the same day I had mayo with my salad. But I think I've paid enough now, and it can stop. The gastritis stopped after a day or so, but the IC just won't go away.

I had multiple food intolerances even before IC joined the gang of disorders, so normally I pretty much follow the IC diet already. Every once in a while, however, I can't bear the sameness of all my food and, well, get stupid.

I've eaten carefully since my slip, even giving up coffee, which believe me, I really didn't want to. When you're only finally getting to sleep when the rest of the household are getting up, you need caffeine. I wish I could say things have improved as a result, but if anything, they've grown worse. (It almost has to be IC as a urine culture tested negative.)

I've had bladder pain (lower right abdomen) with it that comes and goes, and also kidney (well, back) pain. Neither pain is all that bad, not compared to gallbladder attacks anyway, and if it were just that I could ignore it. (I'm on daily strongish pain meds anyway, which might be why the pain doesn't seem so bad.) What I'm finding almost impossible to tolerate is the constant, never-stopping urethral burning and pressure, and the spasming of my bladder, which wakes me up more times a night than is good for my sanity.

The lack of sleep is making me, well, not myself. I don't sleep well anyway, but this... this is like torture. Sleep deprivation. I'm finding I'm putting off going to bed for as long as possible in order to avoid the lying there, trying desperately not to think about the burning need to go, and getting more and more stressed as the violent spasming interrupts me every time I start to doze off.

Typically, the sensations are far worse at night than during the day, and they also seem to be worse when lying down or sitting laid back. If I could somehow sleep sitting straight up, I'd be happier, I think.

I feel like I must have started reacting to a new food for this to be so bad for so long -- but what? I eat almost nothing as it is. :( I've noticed here that some people take opiate based painkillers (or mixed ones like Tylenol) and they help. Could you tell me if they help with the burning/spasms too, or just the pain?

I have an opiate -- Tramadol or Ultram -- prescribed for the days when my pain exceeds the diclofenac's ability to cope, but I'm always very unwilling to take it as it makes me nauseous. If it may help dull things enough that I could sleep however, I may be changing my mind fast.

So anyway, hi everyone :)

(In case it's useful...
Disorders -- Since childhood: Asthma, Eczema, Allergic Rhinitis, chronic Otis Media and Sinusitis. Diag. 1987: Endometriosis. Diag. 1991: IBS and GERD, migraines. Diag. 1999: Rheumatoid Arthritis (now under question), Trochantic Bursitus. Diag. 2004 Gallstones. Diag. 2005: Dercum's Disease, Interstitial Cystitis; nasal polyps.
Drugs
Daily -- diclofenac (Voltaren) 150mg; ranitidine (Zantac) 150mg; Gaviscon Advance 20ml; Inhalers: Ventolin , Beclazone 200, Serevent; Rhinolast nasal spray, Nasonex nasal spray.
'As necessary' drugs -- merbeverine (Colofac), merbentyl, fexofenadine (Allegra), tramadol (Ultram), Betnovate lotion, Otomize Ear spray, various creams, shampoos etc.)

[Dixiefireball]

:hi: and :welcome: to the ICN family. Yes sometimes pain killers will help the burning feeling, but most of the time when I'm burning down stairs its because of a flare due to food/drinks or it could be a REAL UTI also a great deal of stress i will also burn downstairs. yeast can do the same.
I would go into the doctor and be tested for a uti. even if you don't get them often this could be the real one.
if its a flare (if you don't have high blood pressure) sometimes reg tums will stop it or a tsp of baking soda to an eight oz glass of water drink fast it nasty! Have you tried the drug elimron? this is what is normally gave to new icers this helps coat the bladder lining most of the time the Dr's will add some type of dmso to the elimron to help it kick in to help coat the bladder lining however sadly elimron can take up to six months to a year to work.
please take the time to read over the patient handbook at www.ic-network.com/handbook it has a lot of helpful information there.
oh something else that may help is an ice pack between your legs trust me I've went to sleep a many of nights with an ice pack between my legs because the burning was so bad. ice pack helps to if you feel the burning in the bladder or the back area.
please let us know how you are we are here for you and most importantly we care and understand.
sending you hugs and prayers
Rhonda

[traceann]

Hi magpie and :welcome: to the gang! Glad you found us and decided to post! Very nice to meet you!

I remember when I was in my first big flare that got me diagnosis, I DID sleep sitting up, lol. I propped my self up with lots of pillows and found that sleeping with another pillow under my knees helped a lot. That and my good old buddy, My Heating Pad. Believe me he is my best friend, always keep him next to my side of the bed. He helped me with pain and the feeling of constantly needind to pee. I finally got one with auto-shut off so I can fall asleep with it on and not have to worry! :) The stick-on heat patches (like ThermaCare ones) are great for sleep too, very helpful with discomfort.

Do they have you on any IC meds? I read your list and was wondering if any of them were for your IC specifically??? Have you checked out the Patient Handbook? Sounds like you have a good handle on the diet, as fun as it isn't, lol.
http://www.ic-network.com/handbook/

Once again, I want to say welcome to the clan! Hope to see you around the boards!!

[Magpie]

Hi again

Thanks for replying.

As I said, I was tested. This either isn't a UTI, or it's one the test failed to pick up, or it's become a UTI since the test. I guess the latter isn't impossible. I was given a course of antibiotics anyway, which had no effect. Neither did the Canestan/Diflucan double action in case it was thrush (candida/yeast), which I am prone to. It does *feel* like a UTI, except for the fact that I have no fever and it doesn't hurt to pee, so maybe I should get tested again, doctor willing.

I'm not on any IC medication. I refused pyridium, and that was all that was offered me at the time, but I'm only newly diagnosed and my doctors seem more interested in my other problems currently. Having read most of the handbook here I'm now determined to ask for the antispasmodics that work on both bowel and bladder and also to try the helpful antihistamines.

The situation is clouded due to my Dercum's and my Endo. It's possible these IC symptoms are being created either by endo adhesions or Dercum tumours. As neither are generally seen through ultrasound -- I had one; it was clear -- only surgery is likely to be able to find out for sure. As I'm already on the waiting lists for two other ops, this thought is a tad depressing.

Last night, however, when I finally forced myself to bed, things were a little better. The burning remains and the aching back,* but the spasming had really calmed down, and I was able to get to sleep. It could be that things are getting better. I'd like to think so.

What made the difference may have been the large mug of rooibos I had last night. Whether or not it helped my bladder, it certainly didn't make things worse, and what it definitely did do is relax me so that I wasn't lying there overly focused on my every symptom, and I just slipped into sleep.

I clearly must get a heating pad. They're recommended for so many things.

*the back pain could be referred gallbladder. It's very hard to tell with these things.

[traceann]

I am so glad things seemed a bit better and you were able to get some sleep!! :loco: That is always a good thing and can go miles towards helping you feel better with that alone. I know when I am sleep deprived, I tend to feel even worse, ugh.

Like Rhonda said it could be a UTI, I have had a few that have flown under the radar, lol. It's beneficial to have them cultured too, sometimes a dipstick test just doesn't pick it up. One of the more recent ones I have had, I didn't even know I had, ugh. Talk about feeling like a goof, I was in the ER for abdominal cramping (due to my undiagnosed colitis at the time) this past June. The ER doc asked me if I could have a UTI, I confidently told him, no way I am an IC patient and I ususally know (I get a few different symptoms), well, test came back positive! :bonk:

Glad you read the Handbook on meds and treatments. I take the Elmiron, Ditropan (antispasmodic) and the antihistamine hydroxyzine. That has been a good combo for me, no doubt about it. And yep, you just got to have a heating pad, lol. No peer pressure though, lol. :biglaugh:

Hope you are feeling better today!!!

Hugs!

[Eccles]

Welcome magpie! I'm in Wiltshire & my worst symptom is the constant urethral pressure, urgency & painful spasms that keep me awake. I'm on Detrusitol, Elmiron & Amitriptylene & also use Instillagel to numb my urethra at night. Also being considerd for Botox. Hope you find something to help you soon, these sleeplesss nights in the loo are hell! :toilet:

Do you use the UK COB board?
http://www.websitetoolbox.com/tool/mb/cobf

[Katrina]

:welcome: to the ICN and :welcome: to the insomniacs club.
Some pain meds may help with burning but sounds like you need an antispasmodic. Buringing is often from acidic urine, Pelvic Floor Dysfunction, or infections (not necesarily bacterial)....and if your spasming a lot you may want to look into some treatment for PFD. The Newbie kit has ideas to help you sleep. Let me know if I can help you anymore.
http://www.ic-network.com/handbook/ this is an essential link for everyone with IC. It is very informative on meds, living with IC, and self help....take a look!!!

http://www.ic-network.com/forum/showthread.php?t=7562 this is thread of pain relief the second page has attachments I believe the last attachment is the list of pain relief ideas.

http://www.ic-network.com/forum/showthread.php?t=11535 This is newbie kit from the oldies to the newbies
__________________

[Sarojini]

:welcome: to the ICN. I'm glad you found our Patient Handbook useful -- it may well be worth trying some of the meds listed there as they've helped many of us through nights exactly as you've described.

Opiate pain killers help my actual bladder pain, and to a certain extent, burning -- but I usually take Pyridium (phenazopyridine) for the burns. If you find your pain medication makes you nauseated, you can ask for an antinausea medication such as Phenergan or Tigan (or even Zofran) to take with the pain pill. For many, this prevents the nausea that comes with opiate ingestion.

Good luck and I hope you feel better soon!!