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

[trina99]

Hi, Yes, it's probably all related, because Crohn's and arthritis are both auto-immune conditions, where the body's immune system attacks the body itself. I did it the other way round, I've had arthritis for many years, since my 30s (I'm now 61) and I got Crohn's at age 54. It was blamed on the anti-inflammatory drugs I had been taking for years. I have especially bad arthritis in my spine and can't now take much in the way of anti-inflammatory, only 1 tab of naproxen a day, but it does take the edge off. What's really good for joints is green-lipped mussel supplement, freely available. I got on to it because the vet gave one of our dogs some for hip arthritis and within a couple of days she was jumping round like a puppy, so I thought if it works for the dog, it's gotta help me too! Give that a try, it doesn't seem to irritate the gut.

[nace1]

Hi, I am back, (Nace1) my first post was June 7th 2010, where I spoke about having had Crohn's for some 26/7 years, 3 Ops, (bowel resections) and at date of that post 4 months of severe migrating joint pain, so here we are 14 months later with an update:

Many consultations later with both Gastro & Reumatologist,

Reumo is baffled by what is going on as many tests show no degradation associated with arthritis but believes in my pain and has seen physical and photographic evidence of swellings, in summary thinks its connected to the Crohn's, somehow?

Gastro is convinced the Crohn's is under control and therefore joint & other area's with these symptoms are not connected ? so, not the Crohn's?

So neither of them are taking any responsibility, they cant both be right unless it is something completely different? I am so so frustrated, I am sure I could handle the pain and disability better if I new what it is and what to expect, I am now unable to work full time or plan anything as I don't know from one day to the next how I am going to be.

I don't know the answers, but it does help to speak with people who have an idea what I am going through, so thanks for that at least guys, actually I think mostly ladies on this forum, I feel for you all.

Paul.

[dianne775]

Hi, I was diagnosed with crohns disease in 2003, I had one colon resection in 2006. I am in pain everyday, and I too think that I am crazy, and would not ever wish this debilitating disease on no one. I am always reading to find out more about this disease. I change my diet from time to time, but it is never the same. What I ate last week, I can not eat this week. I get sick just thinking about what to eat and what not to eat. I have taken Asacol, Imuran, prednisone, entocort, and the list goes on.
I try to pray daily, but my mind is so much on the pain, I forget to sometimes. I ache through out my whole body daily, I go through the pain and every other night I take a vicodin to help me sleep. (do not want to become addicted) tylenol nor tylenol PM works for me anymore.
I have Rheumatoid arthritis stemming from the crohns. Sometime I do not even know what to say or how to describe my pain anymore, because it just seems as though people do not believe you, and I guess because I still have to get up and do what I have to do; cook, clean, wash, drive kids, which is dangerous because my legs sometimes lock up on me and I have to pull over until the pain goes away. I feel for everyone on this panel and I understand the misery of Crohns, we are not CRAZY, just in constant PAIN.

[Lucky0317]

Wow. I read this discussion and it could have been parts of my own life!!! I was diagnosed with crohns 17 years ago when I was 19. Spent the first 12 years having the digestive issues most of you guys described, including about a foot of bowel removed (iliem area) when I was 28. For the last 6 years it's been less digestive issues, though they are still there, and more joint issues. I have 3 vertebrae in my lower back that a back doc told me look like a 90 year old ditch digger's because of the amount of inflammation/arthritis affecting them. My knees, wrists, feet, toes, hips ... All can and will ache depending on the day/ moment. I have plantar facitis (sp)- inflamed tendons on the bottom of my feet, supposed gout in my left big toe - but it's ALL inflammation of 1 type or another. I'm taking hydromorphcontin every day wondering if I'm getting physically dependent on it, but not able to walk properly or "manage my life" if I don't take it. ie. Too stiff & sore & in too much pain to do simple things like cook, clean, go to the playground with my son (6 yrs old). I also have a spouse who tells me my pain is mostly "in my head" & I don't need the pain meds. I don't get a "high" from them, take them exactly as prescribed and have stopped taking them only to be unable to sleep & go from bed, straight to sofa in the morning because I'm to stiff & sore & in pain to do anything.
I've met people with "regular" arthritis (reumatiod & osteo) and generally the people I've met say they suffer more from stiffnes & with RA deformaties but don't appear to have the "traveling" inflammation of the joints I do (as in one day my knees are worse, few days later it seems my wrists are worse, my back always hurts). Has any one else run into this? I believe I have a very high pain tolerance lol after crohns for this long I've only been on regular pain meds for the last 4 years. With the gut pain we can get people with crohns develop a high pain tolerance I believe. I've tried humira but reacted to it. I also tried remicade a few years ago but had to stop because I got really run down & sick & couldn't get healthly again. My gastrio-doc is thinking of remicade again or referring me to a reumatiod arthritis doc, waiting for blood work to come back. In addition to humira (allerigic), remicade, I've been on pentasa, salofalk (sp?), entocort & prednisone, (so sick of cortisteroids), & immurane ( got very very sick from).
Anyway not that I wish these problems on anyone but it is nice to hear about them & know a person isn't the only one going through it, especially when (for me at least) the people closest to me really have no idea what it's like.
Thanks for letting me ramble.

[Nonnie59]

I'm a 51 yr old female diagonsed with Crohns last summer.  Prior to that I have had bathroom issues for several years.  Within the last 4 yrs I had rt shoulder surgery, but the pain is horrible.  The pain starts under rt shoulder blade, radiates down rt side of back and rt side, under rt rib cage, rt abdomen, rt arm and wrist very week and even makes my rt breast hurt. I've tried several meds nothing seems to help.  It seems like the only time I can really get relief is when I've been admitted to hospital (twice) and they pour on the fluids, however short term. I thought I was CRAZY. I have a appt with Gastro shortly.  Hopefully they can help with all this crazy pain.  

[Coleigh]

I was diagnosed w Crohns Disease at age 30 (which was 5 years ago). I am about 15 to 20lbs overweight...so i could stand to lose weight.  My symptoms aren't necessarily all typical from what I've been told. I suffer from flare ups consisting of mild constipation, moderate abdominal cramps, & occasional nausea. My worse symptom by far is extreme Joint Pain. I do not have RA or arthritis according to my MD.  She tells me that it the pain is directly related to what is happening with my colon. I have significant narrowing in the last part of my small intestine & acscending colon. I'm told that it is time for surgical intervention. .. But I'm very scared & have put it off for 5 months now...entocort / pentasa combo doesn't help & the MD said no need to try other drugs at this point...have surgery. Would love to know if removal of narrowed colon would help ease joint pain...? Most nights I'm soaking in HOT baths & taking pain meds trying to get relief. It's miserable. Very little sleep.

Glad to hear I'm not crazy. The joint pain moves around - hands, knees, ankles, shoulders, etc. Never know where it will be next.  Any suggestions on full lapro procedure vs open? I'd have to travel to have the lapro surgical method but thinking it would be worth it..  Best to all.