Wondering if leg aches and pains are common with IC

[fireflicker285]

I suffer from the worst leg pain. constant. Throbbing and aching. Worse some days than others. I have always strongly suspected it is due to IC. It feels like the aching and heavyness you get in your legs during a period. That is when it is very worst. I have it all the time now though. I don't know if it might be Fibromylagia.... It doesnt' really matter. As coping strategies are the same.

Just wanted to know if leg pain often goes along with IC.
:loco:

[Betsie]

My guess would be fibro or another rheumetoid issue, I go through the same...though I do know when lacking potassium, it makes this worse, can you tolerate a banana each day or perhaps low acid OJ?

On the ICN front, I believe it was ICNDonna who posted a long time ago about cramps down to her knees in flare mode...I may have mistaken her for another ICer.

Try adding potassium, not in supplement form, but through a decent diet. I tend to get depleted very easily and I might add that during menstrual time, my legs throb....though since some gyn surgery a few years back-to aleviate terrible periods, it is not as excrutiating....I have it now.

My husband suffers from full blown fibro and terrible restless leg syndrome ~ my feeling is all of this is connected in some form large or small. Feel better. I also just had an ANA blood series done...this r/o lyme disease, arthritis and rheumetoid factors, though most were ruled out, the ANA levels were a bit elevated. Will repeat in six weeks for comparison....

[curlycue]

Hi,
I have suffered from leg pain as well since being diagnosed with IC in 1997. I never thought it would be cuz the IC. How do you ladies cope with it? I something cant sleep cuz of the constant pain?

[ICNDonna]

When I have a bad flare, it hurts down the insides of my legs to my knees. If you are having leg pain often, you might ask your doctor about having a blood test to determine if your potassium level is depleted. Sometimes it can be hard to get enough potassium in an IC diet --- and a deficiency can cause leg pain.

Sending healing thoughts,
Donna

[curlycue]

Thanks Donna I never thought of that? Its nice to share things with other ICERS.

[blondiecat]

I too have leg pains as well as my bladder area. I hurt severly in both hips, lower and middle back,fronts of my legs down to the knees when my gremlin is very angry:(

[Sarojini]

I agree... potassium can cause this. If you're low in potassium and try adding some back, and still the pains don't go away, I'd ask for a referral to a rheumatologist. I'm about to do this for myself as I have severe joint pain lately (knees, ankles, fingers/knuckles, etc) and my potassium is fine.

[Babs RN]

I have pain to my knees on top of my thighs during a flare.

Hugs,
Barb

[glowbug]

The top of my thighs often ache, sometimes very badly. When this happens, I find I'm restless with my legs, it's like I just can't leave them in one spot. Long before IC, I would have this problem when I was very, very tired, now it just pops up out of the blue for me. I don't seem to associate it with a flare, I just assumed it was a fibro flare. If it is a lack of potassium thats causing it, I don't know what to do about it, I am soooo sensitive to even the smallest amount of postassium.

[Dixiefireball]

I have had that pain on and off for a year or better now.
its been wrose lately.
it hits me in the bottom of my back to the front with my bladder acheing hits hard on my right side then runs down into my right leg to my knee. Oh God how painful that is.
matter of fact as i type this i got a heating pad on my upper part of my leg.
My uro said it was due to hunner uclers on my bladder i did notice when he took them off they stopped but when they come back the pain comes back with them.
My uro said it was due to endo.
personally i don't know where it comes from all i know is it hurts and I wish it would stop.
Please talk to your doctor about this maybe you will get more answers then i did.
sending you hugs and prayers
And Happy New Years 2005

[Iris5]

I can tell you that I used to suffer from leg pain all the way down to my knees. I also had pain sometimes going upward to my ribcage. I discovered it was my connective tissues and muscles reacting to my bladder.

When you have a damaged organ, your surrounding tissues and muscles react by trying to guard and protect it. When your muscles and tissues do this, they become shortened and tight- leading to pain. Try holding your fist in a ball for 5 minutes - how would your hand feel when you released it? It would be in pain right? Why - because you are shortening and tightening the muscles in your hand. Think about when you sprain or break something, or if you've ever been limping around - how do those muscles feel that are overcompensating for your loss - they hurt right?

Similarly, in a case such as ours, our bladders are "sick", so the surrounding pelvic muscles and tissues become shortened and tightened. After a while, the tissues connected to those (the ones connected to and in your legs) also become shortened and tightened. For a much better explanation, (God knows I'm no doctor or PT) please Rhonda Kotarinos guest lecture series on this site.

How did I solve this problem? Physical therapy (trigger point release and myofascial release) and yoga (I practice Iyengar) for the past 5 months. I have almost no pain in my legs or from my ribcage to my pelvis. After all this work, I have managed to isolate my feelings of pressure/pain to my pelvis. Sometimes, when I have a bad flare, the pain will shoot down my legs, but those have greatly diminished too.

I can tell you something else I found out that was funny - some of my leg pain wasn't coming from muscle problems in my legs - it was coming from the messed up trigger points in my butt. The first time my PT examined me, and she pressed that trigger point in my butt, I was shocked - the pain went all the way down my leg. Everything is connected to each other - when I began to release my trigger points, and return my tissues and muscles to a more normal state, my pain in my legs disappeared.

I would highly recommend these treatments to anyone.

[chainsaw]

I was just reading the threads regarding achey legs and IC. When my legs get chilly they ache. Somtimes it helps to take a warm bath before bed and I sleep with a electric blanket on ALL the time just to keep them warm. Sometimes the bath and electric blanket does not work, and sometimes I have to get up a few times a night and soak. It seems to be more in the lower parts of my legs and more in the right leg than the left. Does anyone out there suffer from this too and if so what do you do for it? Could this be because of the IC?

Kim

[Sarojini]

Ok, my achey legs and body and everything are just due to my fibromyalgia (which my doc and I were already pretty sure I had)... luckily I do not have rheumatoid arthritis or something. So, I think that if your postassium levels turn out fine, I'd be checked for fibro. Many many IC patients end up with fibro too (no one knows why), and it can be very painful and annoying, so you may want to check it out. Meanwhile, hot baths can help, as can thermacare heat patches over the worst places. Your doctor can also prescribe Lidoderm patches, which are lidocaine patches that you can wear for 12 hours over the worst spots; they can really help out on days where you feel like you're a 90 year old woman trying to get through the day!!! Also, a prescription muscle relaxant like Zanaflex or Flexeril can help some, but they can make you pretty sleepy. Talk to your doc about these prescription options and see if they many be right for you. :)

[Iris5]

I agree - Flexeril has helped me too, especially when I'm flaring because of physically overdoing it (as opposed to eating something bad that set off my flare). I also found that Sitz baths (just plain warm water) helps too. Yoga helps to stretch the muscles out (surprising that actually working achy muscles helps to relieve pain). Sometimes relaxation tapes (see Dr. Wise's Headache in the Pelvis book and protocol) also help. But the real cure for me in my legs had been the PT and yoga.

Forgot to mention before that my diagnoses were IC, myalgia and myositis.

[Zookeeper]

I am on potassium pills with a water pill.
I was wondering if there is a smaller type pill?
My doc has me on potassium cl 20 meq tab,thats what the bottle said.They are hard for me to swallow I have to be around some one to take them and I am on 10 different perscriptions you would think by now I could take anything but these are horrible to take."YUK" LOL

I hope someone can help me if they know of one that is not so big of a pill????

Thanks & take care. Love, Zookeeper Kim

[cynb2003]

I had sciatic pain for 1 year before I was diagnosed. Once I started on the Elmiron the sciatic pain went away. I haven't had the problem for 1 year 2 months! When the bladder isn't happy, nothing else is either!!

[shinana]

Tracey, I just read your thread about leg pain. Oh, My Goodness, I have been suffering for the last month with leg pain and cramps. Some mornings just getting out of bed with the leg pain is so bad I don't want to make the first step. Falling asleep at night is difficult from the IC, but this has added to a new level of discomfort. Last night my whole body from the neck down was aching, and the same this a.m.....I thought I am really continuing down hill. Also DVT, deep vein thrombus, entered my mind and have stopped taking my Estrotest to see if the S&S stop.
I did talk with my Urologist last week to see if this may be a side effect of DMSO, and he assured me the pain is not relative to IC.
Now to hear other IC pts have this same symptom makes me wonder what the correlation is.

[cynb2003]

I was wondering how many of you get a heaviness feeling in the pelvic area during your period? I used to get the sciatic pain with this heaviness feeling in the pelvic area all the time. After I started my Elmiron the sciatic pain went away, but I still get this heaviness feeling usually the 2nd or 3rd day of my period. Anyone else ever experience this feeling??

[broken_smile]

Hello Everyone,
I never had leg pain or lower back pain until I started having IC even before I knew what the disease was called. I remember it being one of my main symptoms along with feeling I had a UTI. Then I got diagnosed in 1990 a year later with IC and when my IC is in a flare so is my legs. I remember before I was diagnosed I had alot of pain right behind my knees like a blood vessel was getting ready to burst. When I would walk it would feel like my legs were going to give out and I was going to fall. Now years later I still have lower back pain and leg pain and muscle twitching in the legs which they say is restless leg syndrome. Doctors are a trip anything they don't know what causes it they name it a syndrome why don't they say we don't know what it is. Syndrome is the Catch 24 for everything under the sun. I don't know for sure but I feel IC has something to do with the nervous system coummicating with the brain like a short in a electrial system that is sending mixed message all over the body. I feel that is why we have so many other disorders and diseases that goes along with IC. I think before it is all over this disease is not going to be contained to the bladder it may just be the most aggravating symptom. There are to many weird things that go on with IC patients. Well enough of my jabbering.
Broken_Smile :angel: :grouphug:

[bunnymoomoo]

there are quite a number of people affected by Restless Leg Syndrome. my sister's got it and so do i, but she has it worse. she just can't stop moving her leg. it doesn't bother her though. i think with me, my "restless leg movement" is probably a subconcious distraction from "urge" signals.

[Lartrainer]

Wow! I have a flare up right now and also have pain down to me knees and in my back. I wondered if it had to do with my IC and I see that others feel the same way. I guess I'm not crazy afterall! LOL

[jeanniebug]

I suffered from horrible leg pain about 3 years ago, and I was sent to many specialists including a rheumatologist. They could not find anything wrong with me. My hips were actually a little swollen, and the leg pain was so bad that my family doctor had to put me on steroids just so I could get through the day at work. Everytime I went off the steroids, I would literally squirm and cry it was so uncomfortable. It would wake me up at night, and it was so constant and intense I could not even walk through a mall or do light shopping. I knew I had severe endometriosis at the time, and had had several surgeries for that. But, then it was discovered that I had a severe case of a prolapsed uteris. I had an abdominal hysterectomy..and my leg pain was GONE. However, I immediately developed my symptoms of IC after the hysterectomy. :cussing: Now I'm always in a perma-flare. On my really bad days, I get shooting pains down my thighs from the pelvic area, but it's nothing like the leg pain I had prior to. I'm not trying to say anyone here has a prolapsed uteris, I'm just sharing my personal experience with the leg pain. Because, back when it was happening, not one doctor suggested it was related to reproductive issues. Back then, I just happened to read an article about a woman who had severe leg pain, her pain sounded exactly like mine, and it turned out to be because her uteris was falling. So I went to an OB/GYN and voila...my uteris was falling and it was a bad case of it too. The docs said the tissues around my uteris area had weakened due to severe endometriosis. That was the only symptom I had was the leg pain. :hmm: Also, my leg pain was constant, throbbing, worse at night, and felt alot like cramps you get from swimming too much, and like I said I also had some swelling in my upper legs but not lower legs. I still wonder if some of the pain was not IC-related because my uteris was flopping around on all my organs..including my bladder. But back then I had no idea I had IC. I've also had chronic lower back pain my whole life. I'm sure the IC has not helped that either. And-I have chronic fatigue syndrome. (I agree with Broken_Smile..to me this basically means I'm tired and achey alot and the docs aren't sure why or how to fix it, or how long it will last..I've read up alot on this syndrome and this is basically what my experience has been so far) I'm told that can also cause flu-like body aches. Take care- :grouphug:

[jrowley]

Well my leg pain comes from Restless Leg Syndrome, so I guess if you have fatigue with it too and you have a hard time sitting still and feel you need to move your legs alot then it could also be this. So I am with Donna discuss it with your doctor as Ic or lack of potassium are not always is the cause for the leg pain. Leg pain can be caused from many many other disease or dissorders from Fibro, MS, RLS, pinched nerves in your spine, ect.... So get with your doc about it.

[ICLori]

Not sure if this fits with this subject, but I developed arthritis in my knees and hips at the same time I developed IC. My knees are quite bad much of the time.

I'm convinced there is a link between the IC and my knees.

Blessings, Lori

[blondie45]

It very well may be fibromyalgia. I started having very bad morning stiffness, back aches, and leg aches last summer. I went to see a chiropractor who said you could possibly have fibromyalgia. Until he suggested it I had not even considered it. Since us with IC are like 100 times more likely(or something like that) to develop IBS and/or fibromyalgia, it is a very good possibility that your leg aches are fibromyalgia, as I now have fibromyalgia since last summer, and the worst symptom of it is leg pain and back pain for me anyhow. The only thing that helps my leg pain and back pain for this is tramadol.

[sparklebabyprincess]

I get Leg pain that goes down the back of my thigh to the back of my knee, It's kinda like a tired achy feeling I get it in my bum also. I know I do not have fibromyalgia though. My Mom has fibromyalgia
So I know enough to know I don't have it. I really think My leg pain is from IC because I never had problems with it before IC and it is connected to when my bladder is acting up or in a flair.