My joints are killing me

[holyleo]

I am a 32 yera ld female with crohns. within the last week I have had extreme joint pain and inflamation in my hAnds. My knees hurt and I have lost all feeling in my left middle finger. When I sleep, or try to sleep, both of my arms and hands go numb. I got blood work and my ana count is high. They want me to see a reuhmatoid doctor, I am wondering if this isn't crohns related,,,any help for a sister would be appreciated

[babsygal]

Hi, I'm a 45 yr old woman who was diagnosed with Crohn's about 7 years ago but I definately had it for some time before that.
I have also dealt with back pain for the last 20 years and have always dealt with it via chiro, acupuncture, massage, physio, swimming etc.
but in the last 6 months I've had some episodes that have been the most painful of my life and have only recently been told that the two are likely related.
I've been on Humira for 2 yrs, infliximab I reacted badly too, and colazide gives me diarhea and the sulfasalizine type drugs just do bugger all.
I want to only to say I empathise with you all. To others we look like we're okay, it's hard for them to understand the excrutiating pain we can be in. And I'm relieved to discover there is a connection between the two.
Along with humira (and now celebrex) I take cod liver oil, spirulina, pro biotics, zinc, magnesium orotate. I make sure I eat lots of healthy, grass fed red meat and well cooked vegetables. Don't fall for the 'raw is best' line, hard enough for any body to absorb nutrients from raw veg without a rumen let alone us with absorprtion problems.
Good luck all

[amycummings]

Wow I am so happy to read all these postings I was just notified that I was misdiagnosed and I never had Ulcerative Colits I have always had Chrons Disease. I am now addicted to Codeine Sulfate. I was given that to keep my bowels thicker. I have seen many GI doctors and I think they just love to write prescriptions to keep you quite. When I get down to pick something up it takes me forever to get back up my knees hurt so BAD. My arm and hand go numb and I have constant back pain. They think the back pain is from all the fistulas I now have. Before they diagnosed me with Chrons I was scheduled to go in for surgery on March 30th to make my ostomy bag forever. Now with me being diagnosed with Chrons not sure about the surgery but the dr still wants to do it. They now want to put me on all types of Chrons medicine. I am frustrated and so upset this has happened to me.

[dmr1954]

I have had Colitis for 27 years. The flare ups for 10 years were minimal.. Sulfasalazine was the medicine of choice back then. Early 90's a flare sent me to the GI. He changed med to Dipentum. Shortly after that I started aching inn my right elbow. It would come and go. This went on for 10 years. I did a lot of jogging. Seemed like the farther jogged my aches grew. Then the aches went to my shoulders. Sometimes my hips. The last flare started 2 years ago, and has just now getting under control. I tried Remicade, it seemed to be a wonder drug, for a month. It slowly became useless. I tried Humiria, it seemed to work fair. Finally I went back to Colazal. Taking 3 pills 3 times a day. Plus I am on Entocort. I am slowly getting better. My "urgency" to go it all but gone now. But during my 2 year flare, My joints did not hurt! Now that the flare is under control, I am starting to hurt again. I tried jogging 3 weeks ago and that really got my shoulders and elbows hurting. Apparently from the bouncing motion. Anyway It seems that there is an infection in me that is either in my colon or in my joints but not at the same time! I don't like taking Tylenol all the time. I take a half of a Lorcet when it really hurts. Anyway I just wanted to post "my" situation for anyone else who may have similar problems. Hopefully "if it doesn't kill us, it will make us stronger". And please , anyone else reading these posts, do the rest of us a favor and post your "problems". Until I read about Colitis Arthritis, I thought I was NUTS!

[mimi134]

Thanks for sharing everyone...I was diagnosed with Crohn's in 1996.  Resection, steroids, remicade, humira all have helped with the digestive symptoms, but two years ago started having the SAME symptoms as nace1.  I am at my wit's end with this joint/muscle pain/stiffness/swelling.  I feel like I'm 100 years old.  I had some relief with the Humira, but have been hospitalized TWICE with pneumonia in the last six months and was told
I have to go off all the immunosuppressant drugs and am praying the digestive symptoms will not return.  In the meantime I am turning into a Vicodin junkie, as it is the only thing that remotely takes the edge off the pain. Thanks for letting me vent, and if anyone has any suggestions, I AM WILLING TO TRY ANYTHING AT THIS POINT.  Blessings to all...

[tmoruri]

Wow!  It's nice to hear that I am not really crazy.  I was diagnosed with Ulcerative Colits and Relapsing Polychondritis in 2009 and I've had so many side issues I don't know which is to blame.  It's very difficult trying to work or even explain to some people what is going on with my body.  Some days I wake up and everything is just fine and some days I'm drained because I may have spent half the night in the bathroom or I wake up to some part of my body being swollen.  Sometimes it's the joints but more often than not it's the area around the joints (from the RP).  In the last year I've had swelling/inflammations in my nose, ear, face, neck, elbow, wrists, arm, fingers and toes.  One day both of my ankles were totally swollen and I was confined to bed which is very difficult with UC.  It's become a running joke each day to see what part of my body is sore or inflamed as I'm trying to see the humor in all of this to keep from crying.  Anyway, just wanted to say it's actually good to know that I'm really not alone in this craziness.

[nace1]

I feel for you all, and it seems mostly ladies?

I have had Crohns for over 25 years and have had three resections in 1984, 2001 & 2007 I have been on various drugs over the years and had good and bad years, for around a year now I have been on infleximab by infusion, Methotrexate tablets as well as taking Questran to help digestion, folic acid and 3 monthly B12 injections.
I have had some trouble over the years with stiff joints in my hands, mostly in winter, but around four months ago I started getting real pain in my hands and fingers followed by them swelling, this then started in my feet and ankles, legs, knees, arms elbows and shoulders and seems to move from one place to the other on a 2-3 day basis, it sometimes even changes from being severe to the point of not being able to use my hands to just a slight pain and completely moved to, say a knee or a foot over night, my only respite now is too many pain killers and complete rest, as soon as I work (I don't to anything too manual these days) or take exersize one or another, or several of my limbs will be extremely painfull or sore to touch very soon after, the pain is not confined to my joints, in fact there is not always pain in the joint, more around it and in cases up my arm or leg, more like, and it changes, tendon or muscle pain. Yesterday my ankle was swollen and painfull to move, enough to cause me to limp and my calf muscle felt as though I had a severe cramp in it every time I put my foot to the floor. The strangest thing is this continuing changing of the area that gives most pain.
I am coming to the end of my tether with this, my Doctors keep telling me its to do with the Crohns, we will have to do more tests etc.etc. my Crohns has been very good as far as I am concerned for some time now, although I have recently had a pillcam which seems to reveal that the Crohns is active but there is nowhere to go medically, looking like the only option is more surgery, if the surgery would get rid of the new symptoms while the Crohns stays at bay, great but I am now 54 and not keen on yet more surgery when I feel in myself that this is a seperate issue from the Crohns. There are apparently more than 70 kinds of arthuritis, is it possible that this has nothing to do with the Crohns and should be investigated on its own symptoms? I find if you have Crohns any other ailment at all is lumped in with it, "Oh that's to do with your Crohns" is sometimes a very convenient answer.
Any help at all would be appreciated, if any one else experienced anything like this or any proffesionals out there have heard of similar symptoms please get in touch through this site or direct to ***@**** Thanks.