New Diagnosis, my story and questions

Hi there everyone! Names Mike and im 25 years old. Im new around here obviously and just want to share my current story and join this community.

My problems started nearly 4 years ago now and it was not with bowel issues, it all started with extreme pain in my spine and rib cage (that is still with me too this day). The many doctors I saw at the beginning all told me I had Costochondritis (rib inflammation) and that I should take some NSAIDS and the problem would resolve in a max of 2 weeks to a month. YEAH RIGHT! The pain went on and nothing helped, nor could anyone give me any answers. This went on for years until I gave up and stopped going to doctors altogether and decided id have to live this way.

Well over the last year more joints began to hurt, now my major ones like knees, shoulders, hips ect. But I was still so fed up with doctors I did nothing.

Two months ago is when the real Crohns symptoms began. Diarrhea, abdominal pain, horrible gas, fever, elevated heart rate, lost 18 pounds and extremely swollen ankles that hurt so bad I could not walk. I knew now things were obviously not right, and thankfully through family was hooked up with a very well known GI who almost immediately knew what the problem was. Got scoped the next day and it confirmed his suspicions of Crohn's Disease.

So for the past 2 weeks ive been on Prednisone and im just wondering where I go from here. What kind of medications should I expect to be trying, and which ones are good for joint pain? Is this kind of joint pain normal in Crohn's, and is it normal to appear long before the major bowel issues?

Id love to hear from others who are suffering with any of these problems! I just have sooo many questions!

I was recently diagnosed with Crohns too. My joint pain preceded my stomach issues, and within the past six months, my joint pain is almost worse then my stomach issues. The past couple of weeks my ankles have been swelling up to the size of grapefruits, as well as my knees, and now my neck, fingers and hips are even worse. I have an appointment at the end of the month with a rheumatologist, but my GI already diagnosed me arthritis. I've been given mobic, Celebrex and then percocets for the pain, but even with those it's barely controlled. My arthritis/joint issues are definitely more severe then in most Crohnies. I'm only 23, and deathly afraid of how I will feel later in life. My GI wants to try Remicade or Humira, but wants me to wait for a check up with rheumy. Right now my Crohns is out of control, which definitely correlates with the joint pain, ugh.

Hope all goes well, and just wanted to let you know that you're to the only one with debilitating arthritis pain. It just stinks being so young, and having these issues. Best of luck dear!

You will probably be started off on a mild drug & if that doesn't work(most of the time it does not) you will keep stepping up the ladder till you reach a biologic like Humira/Remicade/Cimzia. A lot of people have Crohn's arthritis and sometimes that can be just as bad as the gut pain, if not more. Once your Crohn's is under control, the joint pain will subside. The Prednisone will also cause even more joint aches, especially when you start tapering. Prednisone is also used to treat inflammatory forms of arthritis.

I'm 15 & have Juvenile Rhuematoid Arthritis with my Crohn's. I have a severe case of both JRA & Crohn's & most of the treatments for severe Crohn's & severe Rhuematoid arthritis are the same. I am on a biologic called Cimzia since I've failed all the other medications. My fingers get so swollen they turn purple & my circulation cuts off.
Crohn's arthritis does not do that.The arthritis type pain you are experiancing is a result of the inflammatin in your blood-from the Crohn's-circulating through your joints & causing pain.

Everyone is different as far as response to medication wise. You can have mild Crohn's & be put on a immunomodulator/biologic(the strongest meds for Crohn's) if your disease doesn't respond to the milder treatments.

I hope your Crohn's goes into remission soon! You aren't alone, as mentioned above.

Thanks for the reply guys

Wow I'm sorry to hear that your going through such pain right now nikimazur, I so know what its like and it can be just as bad mental as physical. Just got the try and keep up the positive thoughts. It sounds like we are in a pretty similar boat with all this madness. The joint pain is generally worse for me than the gut issues, but i may just think that because its been going on longer, and it was also my GI who diagnosed me with arthritis. So far no rheumatologist visits though.
I hope your appointment goes well at the end of the month and that you get some answers or at least some adequate help to control your pain. How great would that be! I wish you the best of luck.

Hey there keepingfaith, thanks for the info and the support! Its been so overwhelming these past few weeks, I've done so much research I think the knowledge is seeping out from over stuffing my brain!
I hope one of the more mild medications will work for me but im not expecting it due to the amount of pain I've been in for so long, but hey you never know.
My doctor had me do some personal research on Remicade and Humira since my joints are involved so wide spread and though they seem very promising the potential side effects scare me. Cancer already runs on my moms side of the family and I don't wanna increase my risks even more, but...to feel normal again..idk the risks seem less risky lol.

Well anyways my next appointment is Tuesday so ill be sure to let everyone knows whats going on from there!

Thanks again hope you both start feeling better soon

Hey there Mike and welcome!

I am diagnosed with costochondritis as well and it has definitely been the worst part of my symptoms. Mine came on after 6 weeks of coughing up blood. Good times, let me tell you and I'm still dealing with the emotional toll that took. Anyway, where specifically is your costochondritis? Is it around the sternum or more in the ribs to the sides? When you push on your sternum or ribs does it makes the pain worse?

My costochondritis is doing SO MUCH better. I'd be happy to outline my treatment plan if you like. I went from, "This is brutal I don't want to live like this" to, "This is kinda annoying sometimes". I hope to have it COMPLETELY gone within 3 months

Again, welcome!

Hi David thanks for the welcome!

Boy do I ever feel your pain my friend, the costochondritis is hands down the worse part of any of this and its been with me for so long. It has months of ouch..this suck, and months of "i dont want to be alive anymore" because the pain can be so extreme. Plus no one seems to understand the condition at all!
Sadly I can't say specifically were very well because its the majority of my rib cage..but id say the worst is the mid to lower ribs...the left side being a little worse. The sternum hurts as well though, pretty much all of it :/. And any kind of pushing or pressure on the ribs hurts.
I used to be very athletic but ANY exercise makes the pain flare up within an hour and last for days before going back to "tolerable". Its frustrating.

VERY happy to hear your feeling better with it though! I would not wish it on my worst enemy so knowing someone is getting relief is awesome!
Id love to hear your outline, Im willing to try ANYTHING!

I hear what you're saying bud. I too tried EVERYTHING and was starting to ponder surgery :facepalm:. I was very athletic as well which went down the tubes when this started. I felt like I was an 80 year old in a 34 year old body. I am now back to playing volleyball and working in the yard. It's great What I do:

1. Prolotherapy. When I first heard of this I thought it was someone who was going to tie crystals around my neck and try to align my heart chakra or something. I had never heard of it before. However, it turns out that medical doctors are usually the ones that do it although here in Florida I'm lucky enough to be able to have an acupuncturist do it.

The premise is they inject a solution of (in my case) B12, dextrose, and lidocaine into the joints, tendons, and ligaments that are damaged/painful. This creates an inflammatory reaction and attracts new stem cells to the area. For the 3 days after my first injections, the pain got worse and I was miserable. But that's because of the inflammatory reaction. After day three things started to get better. A LOT better. It was amazing! I just had my fourth round of injections this week (we do it every 4-6 weeks) and I have gone from a, "It hurts to breathe" to, "Oh yeah I forgot I had this that hurts a bit." :dance:

There are studies that show the efficacy of prolotherapy. It's not some mumbo jumbo therapy and I truly can't recommend it enough.

2. I purchased a set of these. After the two week mark of my prolotherapy things had improved to the point that I was able to start doing some strengthening. Five days a week I do a series of exercises with those that takes me about 15 minutes. I find at this point if my chest is painful doing those exercises actually relieves the pain I have. I'm happy to detail those exercises if you end up getting these.

3. I have recently begun taking a supplement called L Glutamine. It is supposed to help rebuild muscle, help with leaky gut, etc. I feel like my chest has taken another notch off the pain scale once I was a few days into that.

4. Eating healthy, low stress, plenty of sleep, plenty of water, maintaining proper vitamin and mineral levels, etc to help my body be able to heal itself.

I'm happy to elaborate if you have any questions

I can't guarantee this would help you, but it sure as heck has helped me!

Jeeze the 80 year old thing is really resonant with me.

1. I've heard of this prolotherapy before but was never sure if it was a legit procedure. It seems to be doing you wonders though, so I guess its a pretty valid method of treatment! I will look farther into this for sure.
Does the actual procedure itself hurt? I saw a video and it looks pretty brutal lol.

2. Wow those are pretty cheep, Ill probably order some soon and see if I can get any use out of them. Ill let you know if I do!

3. interesting will also look into these.

4. Could you elaborate on your diet a bit? Ive always though ive ate pretty healthy but im not totally sure. I avoid fast food and things like that for sure.

Thanks for all the info, its really helpful.

1. It's surprisingly not bad at all. Once in awhile they hit a spot that hurts for a split second and makes me jump a little but that's often where the juice is really needed anyway. Pain of prolotherapy < pain of costochondritis. It's that simple

2. They're great. I get much more benefit from them for physical therapy use than normal weights because of how they create resistance.

4. My diet is very low in sugar, all organic, and basically the paleo diet from there. But I think it's about what is finding what works best for you. It's certainly an ongoing effort for me.

I am defiantly going to look into the prolothearapy then. In fact I know a pretty good doctor who does the procedures now that I think about it. Guess Ill wait till this Crohns biz is under control 1st though.
One more question about that, for costchondritits, were do they do your injections? is it all in the back side of the ribs or the front?

My next GI appt. is Tuesday and im going to tell him in more detail about the extent of the joint pains as everything has happened so quick before I could only briefly discuss it. He seems to understand so far but have not told him about the costo, not sure how interested he will be since its not his realm. Hoping for the best.
I also have some strange neuro stuff going on too. Still a long road ahead of me. Wish I was not so impatient!! Im making it harder for myself lol.

I get injections related directly to the costochondritis in my sternum, front ribs, and back as it's all interconnected.

Please tell us about your neuro problems in detail. I or someone else might have some ideas

David thanks for being so helpful and informative, Its really helping me sort my thoughts out.

That must be alot o' injections! but as you said the relief has gotta be worth it

As far a neuro issues It started out a few years ago as burning and tingling (pins and needle) sensations that rush through my body in waves. I did not realize it at first but When it happens its only in correlates to temperature, as in warm or hot temperature. Stepping out into the hot sun or even in a warm room will set it off. It can last either a minute or go on non stop until I go somewhere cool. I also just recently have developed some weird vision stuff like little sparks of light in my eyes from time to time and increased floaters. The sensations I get though are very aggravating, its no a pain per say but it makes being comfortable hard.

My vitamin b-12 level is good and my D level was in the good range just on the lower end (supplementing now) . I have had no kind of neurological work up.

Thanks again!

Give our peripheral neuropathy wiki entry a read and see if any of it might be worth discussing with your doctor.

Out of curiosity, do you know what your specific B12 level was last time you were tested?

Seems like that is pretty close to what I've got going on, Ill bring it up with my doctor for sure.

Hmm now that I look at it my b12 was actually high when it was tested, I was taking a powerful b complex at the time though. It was 1485 pg/mL, and it says normal levels are 211-946. My vitamin D was at 35 ng/mL.

Well I had my doctor appointment today, I have to say I love my GI. He seriously cares and spends time with me, nearly 25 minutes discussing things with me and walking me through all the questions and concerns I had. It really puts me at ease and I feel like I'm in good hands!
We discussed my Joint pain and issues with tingling sensations ect. He said it could all be related to the Crohns but he referred me to a rheumatologist to get checked out to make sure there is nothing else potentially going on before jumping 100% to that conclusion. Yay for more tests :/, but I would rather be safe than sorry!
Dropped the prednisone down to 30mg starting tomorrow as well to see how I do for awhile, cant wait to get off of this vile drug. He told me about the maintence drug options and gave me alot of info on things like imuran and the biologics. Told me to research it ect, I told him id really have to think hard about it and he understood.

So it look like for now its a trip to a new specialist, some more tests, and seeing how I do on the lower prednisone dose.

I'm really glad you like your GI. That can make such a world of difference. Best of luck with the Rheumy!

Under the treatment forum, we have subforums dedicated to those two medications if you want to connect with others already on them, ask questions, etc.