Back pain

[hsweet1968]

Hi there
I'm new here, and going through a really bad flare after an internal exam by my gyny and having to sit upright at work.
It feels like I'm getting pain right up to my kidneys... does anyone else get this? I'm being treated for a UTI, and so the antibiotics should be taking care of it if it were a kidney infection.
I know that we all experience different symptoms... just wondering if this falls within the realm of 'normal' for IC.
Thanks!

[ICNDonna]

Some people do get low back pain with IC. However, if this is a new symptom for you, my suggestion would be to discuss it with your physician.

Sending healing thoughts,
Donna

[Dixiefireball]

i do get alot of pain in my right kidney but i have three kidneys and the right side is my double one should i say my ex large one they are grown together. but i do get alot of pain there Yes even tho your on anti you could still get an kidney infection the infection may have grown another bat which is traveling up into the kidney and your doctor may have to change your anti.
sending you hugs and prayers
Rhonda

[skershner3]

I have always had alot of lower back pain with IC. It is somewhat better now. I was prescribed Ditropan XL and it was causing so much urinary retention that my bladder would fill and push against my spinal cord so my urologist discontinued the Ditropan XL. Also while taking the Ditorpan and having the retention I was having to strain to pee and when I would, I found that I would get a "tugging" feeling in my kidneys. Susan

[blue]

I have ALOT of back pain!

[sleepyangel30]

i dont have those back pains with ic anymore, seem like they just faded away hehe.

[jala]

My pain usually starts as urethra pain, expands to the bladder, and if it really gets bad, extends to the kidneys. It is usually caused by something I ate. My rule of thumb is, if it burns my mouth even slightly going in (typically spicy foods), it will burn on the way out.

Prelief might give you some relief (usually right away if it is going to work). I also take a Benedryl at night to try to alleviate the problem. Jala.

[hsweet1968]

That's exactly what happens to me... the pain starts low and works it's way up to the kidneys. Thanks so much about the tip on Benedryl... I swear by the stuff every spring when I have my tree pollen allergy, and if I take it at night it helps me sleep too.
I'll give that a try!
Thanks
Helen

[tarasmiles]

I get very low back pain. The way I describe it is that I have a burning hot rod that enters my bladder and goes straight back to my spine and then tries to drill a hole through my spine.. That's what it feels like to me.

I also get the pain up to my kidney (But I'm not sure if this is from my kidney disease or the IC) Plus I get kidney stones and sand so it could be that too...

But I always get the low burning back pain along with the bladder burn and pain.

Tara

[Coleen]

This is my biggest concern and complaint. I was diagnosed in January with IC. I first had a back ache with a severe kidney infection in Sept of 2003. Which led me to the Urologist right after wards then to my diagnosis in Jan. Still now May 17th 2004 I have had a backache every single day! Feels like lower back kidney region. I am a administrator at work and sit with my heating pad daily. For me this is the worst part and the most annoying. It feels so tight like I want to stretch it. I have a follow up appt today from a UTI last week. I am going to talk to him about what my options are? Physical therapy? Pain clinic? cortisone shot? I am so tired of it and now its getting hard to sleep at night due to being uncomfortable. Ill let you know what he says. But now I take vicodin a few times a day but he doesnt really give me enough to survive that way( since i need the vicoden incase of a flare) GOOD LUCK but I can definately relate for sure... Like I said it MY BiGGEST gripe..... and doesnt seem to be a concern to the Urologist. Im gonna make it his concern today.. No reason I should be living in pain from my back daily....

[hsweet1968]

Good for you Coleen. You really do have to be forceful with doctors, and they just don't seem to understand pain.
When I saw my GP (and I'm STILL waiting to even hear about a referral), she would only give me 30 Tylenol 3's for a MONTH, and I'm getting married on Sunday... so a flareup is just kinda inevitable.
Grrrr.
Let me know how it goes.
Helen

[ad8123]

I talked with my urologist about back pain right away and he rules out kidney infection and failure with some tests and mu muscles and spine are fine, so he said it is from the Ic, something about the nerves getting overstimulated. Supposedly that is what the Elavil helps with, but so far it just makes me fat. You definatly need a good Md, a urologist or a pain doctor tylnol 3 will not even touch my pain (but we are all different). I use a heating pad too and some "deep Relaxation techniques" (but they can put me asleep plus they take awhile stil learning).

Angela
Florida:angel:

[hsweet1968]

Thanks for the feedback. Believe me, whether back pain or just bladder pain, the T3's do squat. I'm so upset! I tried to explain that HECK I'm getting married and want to enjoy at least SOME of my day and my wedding night, it's going to cause one massive flareup, and this isn't going to do a thing for me. She said I'd just get addicted and basically to go away and suffer.
Nice.
This sounds bad, but I've been asking friends if they have anything a little better to help me with my honeymoon. I don't know what else to do!
Thanks for listening!
Helen

[blueblondie1121]

HSWEET1968, I TO HAVE ALWAYS HAD A LOT OF PAIN IN MY BACK. MY DOC SAID THAT IT WAS ANOTHER PROBLEM. I KNOW MY BODY. IT IS THE IC. MY RIGHT KINEY ALSO HURTS , SHOTS SHARP PAINS THRU IT. AND NO THEY DO NOT CARE IF WE SUFFER. WHY DO THEY MAKE PAIN MEDS ? THEY WONT GIVE THEM OUT. BUT YOU KNOW I KNOW A LOT OF MEN SURE GET PAIN MEDS. WHAT'S WITH THAT. I KNOW .IT IS STILL A MAN'S WORLD. THEY THINK ALL US WOMAN ARE CRAZEY ANYWAY. SOMETHING NEEDS TO BE DONE. WE NEED OUR PAIN MEDS ALSO. WE NEED TO BAN TOGETHER ON THIS PROBLEM.IC IS NOT GOING TO GET BETTER. IF ANYTHING IT WILL GET WORST THE OLDER WE GET. I FEEL YOUR PAIN,UNDERSTAND. I HAVE BEEN DOING BETTER DOCTORING MYSELF. I KNOW THIS SOUNDS CRAZEY BUT ALFALFA HELPS,IT IS CHEAP. IT EVEN HELPS WITH THE BACK PAIN.TRY IT .:thumbsup:

[ad8123]

Hello again, I just had a thought, my gyno exams always put me in a flare so I take a valium before i go. Do you have a urologist treating you? If not get one that knows about Ic in my experience the GP do not know anything. Ask for a referal to a pain clinic I have heard they can help but they should be giving you pain meds, IC requires them untill it is undercontrol. And i agree with what blue said in the previouse post it is a mans world, we just get patted on the head and told to deal with it. find another doctor if you can and tell them your number one problem is with PAIN.

hope your day is better ( I am in a wretched mood today flare and all)

angela

[Ginny]

I have always had back pain with the IC. I don't think it is in the kidney area. If you stand up and turn at the waist that is exactly where the pain is. It's really bad. I think it has been there the entire time I have been dealing with IC which is 20 yrs. Sorry to have to tell you that.

Ginny

[blueblondie1121]

HI AD8123, I HAVE A URO HE DON'T LIKE GIVING ME ANYTHING. I GET A SERMON,2O PILLS TO LAST 6 MOS. AND HE IS IN GA .AND I HAD TO MOVE IN WITH MY DAUGHTER IN SC. AND AS YOU KNOW BROKE ,NO INS EITHER.I FOUND A DOC A MD. THAT SEES ME, I CAN PAY AS I CAN. BUT THAT DOES NOT HELP ME GET MY MEDS. AND PLUS HE IS HAVING TROUBLE GETING MY RECORDS.SO I CAN'T GET MY B-12 SHOT EITHER. THE DOCS ACT LIKE IT IS A DRUG TOO. FOR SOME REASON THEY DO NOT LIKE GIVINGIT. I THINK CAUSE IT DOES HELP WITH PAIN,FATIQUE,MOOD SWINGS,MEMORY.IT DOES HELP ME ALOT.AND THEY CAN'T MAKE MONEY IF WE STAY WELL. I BEEN USING ALFAFLA TABLETS. THEY ARE CHEAP, THEY DO HELP. IF I GET MY SSDI I WILL GET SOME MEDICAL COVERAGE.STARTED IT IN 1/04. STILL WAITING TO HEAR . WISH ME LUCK.:butterfly

[hsweet1968]

Thanks for the advice Angela.
I'm in that pergatory of waiting to see a urologist (Canadian health care ... ). My GPs office finally called today to see if the uro I'm supposed to see has contacted me yet... NO, and it's been over 2 weeks.
There was a lovely woman I spoke to here who has IC, and she too recommended a pain clinic. Right now, I just wish I had time for a referral and to actually get in and GO, but have 5 days before my wedding, and work has me swamped (plus, it would probably take a month to get in, at least!!!). As soon as I get back I will follow that avenue as well, 'cause things just can't go on like this.
My gyny exams make me flare like crazy... can you imagine a honeymoon :dizzy: :dizzy:
Anyway, I'll hang in there. Thanks so much for the support and caring.
Helen

[aantol73]

Helen...
So sorry to hear of all of your distress. I hope you get into see someone soon who can help you.
:pray:

[Coleen]

Well I made it oud and clear the other day that I have had enough with my back issues. He gave me celebrex to try for 2 weeks. He also finally gave me percocets (30). those will last 10 days I take 3 a day. He used to give me vicoden but they do absolutely nothing. Anyhow he said he couldn't tell me if the pain in my back was IC related or not. And in two weeks if nothing from the Celebrex then he would send me for an xray to see what was up. I dont know what to do after the 10 days because I dont think he will give me anymore this month. I do look it up online before I take anything that isnt perscribed to me.

[hsweet1968]

Well, I FINALLY got an appointment today with a uro... the day I get back from my honeymoon. I've always figured it's best to be in your worst condition when seeing a doc... and boy oh boy I couldn't have better timing!
Anyway, that should be interesting. It isn't the doctor I asked for, the wait was too long apparently. Instead it's a 60-yr old man... I must say, my experiences have been better with younger, more 'enthusiastic' docs, but I won't judge him 'til I see him.

Wish me luck!
Thanks again for the support.
Helen:)

[blueblondie1121]

COLEEN, IT IS PRETTY BAD THE PEOPLE THAT NEEDS THE PAIN MEDS HAVING TO GO TO THE STREET. THEY ARE STILL GETING THEM ANYWAY. THE LAWS HURT THE PEOPLE THAT NEEDS THEM MOST. LIFE JUST AIN'T FAIR. I QUIT ASKING MY DOC. HE IS AFFAID WE WILL GO TO JAIL BOTH OF US. I THOUGHT THEY WERE THERE TO HELP US. SO MOST OF THE TIME I HURT .SO I DO NOT HAVE A LIFE. SO I JUST STAY HOME AND SUFFER ALONE. IS THERE ANYTHING WE CAN DO GROUPING TOGETHER YOU THINK? I WOULD LIKE TO TRY. GOOD LUCK WITH YOU DOC :butterfly

[SheriG]

SORRY THAT YOU ALL ARE HAVING SO MUCH BACK PAIN WITH YOUR IC. THIS HAS ALWAYS BEEN ONE OF MY WORST PROBLEMS, ALTHOUGH RIGHT NOW MY BLADDER IS KILLING ME TOO, BECAUSE I AM ON STEROIDS FOR ASTHMA, AND BOY, DO THEY HURT MY BLADDER!:yikes: ANYHOW, I ALSO WANTED TO TELL YOU ALL THAT I PURCHASED THE IC CUSHION FROM THE IC STORE, AND IT DOES HELP TAKE SOME OF THE PRESSURE OFF YOUR BACK WHEN YOU ARE SITTING...EITHER AT WORK, OR IN THE CAR, WATCHING TV...JUST A SUGGESTION .WISHING YOU ALL LOW PAIN DAYS AHEAD!:grouphug: :hi: :kiss:

[skershner3]

I am fortunate that my family doctor give me pain medication. It would be alot harder to get them from my urologist I think. It soulds like all of the doctors that you guys have been dealing with are just not informed of IC and how debilitating it is. If I were you I would get on the internet, do some surfing, run off reports from the urology boards, Journal of America Medical Association, Web MD, etc. and run off some reports on IC. Most of these reports will tell you that the pain from is the same as pain that a cancer patient experiences. Go through the reports after you print them off and highlight important areas especially about pain and the levels of pain. There should be information that you can get from ICN and ICA that you can use. If they see stuff printed by other doctors then maybe they will open up their eyes. No Lorcet and Lortabs wont touch the pain. If you are using the narcotic pain meds for pain and not to "catch a buzz" then you are using the meds are they are described and you are not addicted to the medication but building up a tolerance to them. Myself I am very careful. I have Percocet and Motrin 800 mg. which can be used together and I start out with 1/2 of a Percocet and if the pain gets worse I take the Motrin 800 mg. then if I have to I will take the other half of the Percocet. I have been able to keep my amount of medicine to get the same effect out of it because you do build up a tolerance. Doctors are there to give you relief and not leave you suffering to treat you symptoms and pain. Give them some background info. Keep a pain diary and take it to your visits and show them on a scale of 1-10 (ten being the worst) what your pain is each day. You will find these scales on the web sites as well. Sometimes the doctors need educated on IC and it sounds like these ones do. Print off some member of the message boards without the names where they are taking Oxycontin, Percocet, MS Contin, Diludid, Tordol, etc. for pain. Hope this helps. I didnt mean to write so much but this really makes me mad. People should not suffer. Susan PS. My urologist told me that alot of back pain from IC is where the bladder fills and pushes on the spinal cord.

[ShawnaAB]

my daughter is 15 and was dia. last year with IC, Endometerosis, IBS and Kidney disease. She has been out of school for the past three weeks due to unbeleavable back pain (1-10 scale 8,9, 9 1/2). When she thinks that it can't possibly hurt more it does. She has had Cat Scan , MRI, IVP, 24 hr urine and blood test. They can't say what is causing the pain. It seems none of her Dr's want the pain to be related to their condition. I made an appointment with the pain clinic at Childerns in Boston.

But as I was ready your feed back I notices a common ground with most every one, the pain is on the right side. The same with my daughter. Anyone else notice that?

[skershner3]

Actually my back feels like someone has whacked me across the back with something, in the lower back BUT there are times when I feel like someone has a very hot rod or a sword sticking it from the left lowers upper thigh, actually lower abdominal/pelvic region straight back to my lower left back. I also have at times a very bad tugging feeling on my left kidney. Go figure, I dont know why. I blame part of that one trigonitis, just a hunch. Have none of your urologists said anything about your bladder filling up and tilting back and pressing on your spine and spinal cord? My doctor was very concerned about it because I was retaining alot of urine and was having terrible, terrible back pain. He had me start doing self catherization every four hours and discontinued my Ditropan XL and it has cut down the back pain alot but I can tell when I have retention because my back pain is worse. It makes perfect sense if you look at the atanomy of the bladder and spine, etc. After he told me this I did some surfing and found that you can actually have spinal cord injury from this IF it goes untreated and the bladder continues to press on the spinal cord. I would mention that to some of these doctors that dont think that IC has anything to do with back pain. Also, why is one of the common symptoms of a bladder or kidney infection lower back pain? Ask them that one. That is a common symptom of both of these - so explain why IC would not. That just doesnt make sense what you have been going through. I live in a very rural area but blessed with a great urologist that knows his stuff. I dont doubt him. Good luck. Susan