So weird.... swollen feet and joint pain!

Hello folks.

I created an account here awhile back when UC was still pretty new to me, but it seems this disease can surprise a person even after he/she thinks he/she has become intimately familiar with it.

I've had this disease for about five or six years, and have had some pretty severe flares (hospitalised a couple of times due to extreme blood loss and dehydration). Strangely, I've been in virtually complete remission for about two years without any medications. Alas, about a month ago, I felt the disease becoming active again as I noticed a steady degeneration in the health of my colon with the usual symptoms. I was so sure I was going to need to use prednisone again and then get on Humira or Remicade, but I've been getting steady improvement in the health of my colon over the last week. This is extremely strange, as I have *never* has any improvement when feeling this ill without medical intervention.

Sounds good, right? Not so fast. Over the past week I am feeling a pretty intense ache in my knees, the backs of my ankles, my feet, and sometimes a lesser pain in my elbows and neck. I ran online and noticed that these aren't uncommon symptoms for people with active UC, prior to, during, or shortly after a flare. So for those of you out there feeling this strange set of symptoms, you're not alone. I do hope that this joint pain subsides quickly, as my colon is feeling better every day (shockingly).

I'm wondering, have any of you who've had joint pain had it go away on its own? I'd really rather not commit to a prednisone cycle, but I'll have to see how long this persists and how much patience I have. I've had quite an unhealthy lifestyle, lately (bad food, lack of exercise), and haven't made things any better on that end.

quincy said...
Some joint pains can be related to having UC, some not. I've never been without joint pain pretty much my entire life...but none of it's related to my UC directly, meaning none of the markers coincide.

But...when i'm flaring...I feel crappy all over, and it's possible that some of my meds are making it worse...or better and I don't notice?

Exercise is definitely helpful, but I'm guilty of not indulging to its fullest benefit...to my detriment.

You should get checked to find out what exactly is going on considering you have foot problems as well as other joint pain. There are marker tests that could point to what's going on.

So, would you consider yourself flaring at this point? and you aren't on any meds?

How old are you? and do arthritic or joint issues run in your family?

Could you possibly have repetitive injury in your elbows and wrists?
Forgot to add that weather fluctuations affect me bigtime! and the pressure ups and downs hasn't been the best this year...add the humidity..yikes~!
How has it been in your neck of the woods?
q

I am currently coming out of a moderate flare, and haven't used any medications (save Tylenol) for about two years. about a week ago, I was quite certain that I would need to use prednisone in the short-term and begin using Remicade or Humira (Remicade stopped working for me about three years ago, but perhaps they would let me try it again). Remember that I've been in remission for about two years without using any medications (which I think is a total fluke).

There's no way these pains are associated with stress or trauma, I've been pretty inactive for quite a few months. I can just feel intuitively that they are related to the moderately active UC that I am currently experiencing. My main curiosity is whether or not I can expect what I am confident (albeit not certain) is UC-related joint pain to simply go away on its own considering the moderate flare I was falling into starting going away on its own. In other words, if the colon symptoms are disappearing, and I'm feeling better in that regard every day, can I expect the same relief with the joint pain I'm almost positive is associated with the flare?

Either way, I'm seeing a doctor (not a specialist) on Monday, and was wondering if you folks had any anecdotes to share.

As far as the weather goes, there have definitely been some major fluctuations recently. I'm in the northeast, and perhaps you've seen that there's been a very unusual heatwave with intermittent rain. I'm skeptical of the relationship between weather and symptoms, but who knows?

Thanks for the reply.

about 25% of people with IBD have joint pain associated with their disease. For many years, my main complaint was joint pain. At one point, every joint in my body was hurting and I eventually had to switch meds to manage it better. My hands, wrists and elbows are always the first to hurt, plus a knee injury from my teens seems to flare up when things are getting bad.

Another thing that causes joint pain for me, even in the absence of bowel issues, is any viral infection. A cold will make my hands hurt now. I think it is all part of the same immune cascade that goes along with the IBD. Some would call that reactive arthritis. My rheumy calls it enteropathic arthritis. It is not damaging to joints but it does make living miserable sometimes.

Since you're in the northeast, have you been tested for Lyme? It can absolutely cause the joint pain you're experiencing.

Joint pain is always my first sign something is going on with my UC. The last flare I had my ankles hurt really bad but I had no other symptoms. I even went to a podiatrist and he gave me an ankle brace (of course that didn't do any good). Turns out I was at the beginning of a flare and didn't know it. Knee pain, elbow pain and wrist pain followed about a month later.

So sorry about your joint pain. It's no fun at all.

The first sign of me having UC was waking up thinking I had somehow broken my wrist in my sleep. It was horribly swollen but not incredibly painful (nor was it discolored). I went to a urgent care facility and they took X-rays and they were negative. Once I started experiencing stomach issues it was pretty easy to diagnose myself with UC. A trip to the GI a couple days later confirmed everything.

My feet/ankles/shoulders/hips/wrists all had pain and swelled up from time to time. I have had a tough(ish) time getting it under control. Stomach meds weren't enough, as when I tried to taper off Pred my symptoms came back. I've had to go on Azathioprine and I am all the way down to 5mg of Pred without any issues.

hey ster, what's shakin ?

Conquer UC said...
Hah!!! So glad i found this thread! I just posted a question re the same symptoms you are experiencing, but mine feels more like muscle pain, or maybe it is joint pain. Especially behind my knees thats the worst area. Just like you, my flare is going away but the joint pain is escalating. Im like are you kidding me...o_O

You and I are not alone! The pain in my feet is quite bad, at the moment. It's very difficult to walk, and even sit. I find myself lying on my back with my feet significantly elevated to reduce blood flow to my feet.

I would agree it sort of feels like muscle and bone pain in addition to joint pain. I have swelling, and tenderness pain on the inside of my right foot (quite severe, although both feet are inflamed), the backs of both my ankles, the insides of my knees (causing pain during flexion), and to a lesser extent in my wrists, elbows, and neck. I think I have a weaker constitution than the average person, and it doesn't take a lot of pain to incapacitate me: to make me light-headed, to give me a headache, to make me nauseous, to make me sweat, etc. Even typing out this message is difficult for me as I am sitting upright at the moment and the blood is flowing to my feet, causing me pain.

I'm going to go lay back down.

This is very unpleasant.

Post Edited (Robert.K) : 7/20/2013 11:32:47 AM (GMT-6)

It sounds much more than related to UC, but not to say it's not autoimmune. They love to party together.

Because you're having extreme symptoms...I do seriously hope the doctor will do extensive liver AND kidney panels. He should also send you possibly to a vascular specialist and a rheumatologist.

Try not to say to him...well, it could be related to my flare, etc. It's better to do the testing to exclude than not doing them at all.

This isn't a normal thing...especially since you're not getting any relief and it's getting worse.

Please keep us posted as to what your appointment reveals.

q

@Robert,
I did not notice your age and medications on this thread so my comment will be limited.

If Tylenol does not help, give a try to Nabumetone (Ralefan) and if your insurance is good, Celebrex. I am taking both alternatively for my migraine now and they help without flare so far (Nabumetone is better than Celebrex but slow to respond). The point I am getting at is, if this knee pain is an inflammation or something else. If inflammation, either of these medications should help. And if they help, there could be a connection to UC.

The kind of symptoms you mentioned, I had similar on my toes. They were so bad that a little hard touch would leave me screaming. Very tender, extremely sensitive etc. etc. GI recommended to see a dermatologist and he was suspicious of Lupus. He tested but the test came negative (and he is still suspicious). I am using most potent steroid but even after the use for 3 months, it is still taking time to improve.

Have you tried cold packs or hot packs depending on the needs? Do they help?

Go by quincy's suggestions with blood testing. You got to do this to make sure what is going on. Also consider seeing rheumatologist.

Keep us updated on how it goes.

Robert.K, please get tested for Lyme.

stereofidelic89 said...

Robert.K said...

stereofidelic89 said...
Hey Robert. I suffered with excruciating joint pain on and off from May to December 2012. After lowering my dosage of asacol to 800mg/daily instead of the typical 2400mg, joint pain has been no more. I stopped eating gluten as well.

I hope you feel better, considering you are not on any meds at the moment. Look into this supplement: Zyflamend. And go heavy on turmeric spice with your meats/veggie foods.

I wonder if it will go away as my colon symptoms have. This disease does have the ability to surprise, as I began to pull out of a flare without any drug intervention (pure luck, in my view), which has never happened to me before. It seems to me that my immune system has decided to attack my feet and knees instead of my colon. It's so bad that I will use any medication (prednisone, perhaps?) that my GP advises me to use on Monday.

Tyenol barely takes the edge off the pain. It's so bad that I need to type this message while laying down in bed because of the pain caused by blood flow to my feet.

I had the same thoughts in my head.

My UC was under control when joint pain started, and it was painful. I did blood work to test for inflammatory markers and anti-nucleur inflammatory activity (which doc said rhumy docs would test for) and everything came back negative. Sometimes I wonder if a virus is trying to get out of us.

The ER physician I saw today had some suspicion that this may be some sort of virus-induced arthritis. My intuition says otherwise, but who knows? Clearly I have a problem with an overactive immune system, and I think I remember having a semi-flu/bug (very insignificant) about six or eight weeks ago. Who knows? I still think it's a function of my UC, and I think I'm going to need immunosuppressant interjection, i.e. prednisone.

Hope the doctor tomorrow will do more than the emerg doctor did.

Keep us posted...you surely need to know what's going on.

q

I also have experienced the joint pains, it got so bad, I also was once in Er for it. . No Doctor, including my GI could give me a reason for it. After zillion of tests and drs I finally saw a different GI and a rheumy, that confirmed it goes along with my Uc. They did have to put me on short dose of prednisone to send into remission, and switched me from Asacol to sulfasalazine. That really worked for awhile. But since joint pain is again coming back, They might have to switch me to humira. For some seems joint pain is right before flare, for me, it happens more often than a UC flare. Lovely autoimmune diseases...I hope you get the answers you need, and good luck!!!