Newly Diagnosed - Anyone experience severe joint pain?

tcbolander · Post by **tcbolander** » Thu Oct 13, 2016 9:59 pm

I'm so happy to have found this forum! I was diagnosed with LC 6 weeks ago. I have been on Entocort for the last six weeks and as I've started weening off, symptoms are getting worse again. Cholestymine controls the D and the urgency so I'm glad for that but....

...the PAIN. Does anyone else experience severe joint pain and pounding headaches? I've been tested for RA and it was negative. I am 99% sure it is related because it started the same time as I started having all the GI symptoms. I have chronic back issues and back arthritis so I am well acquainted with pain but this is nothing I've ever felt before and it is every joint in my body.

Of course my GI says it isn't related and that joint pain only occurs in Crohn's patients. :P My GI also said diet doesn't help but in the short time I have been looking at this forum, it is very evident that diet is EVERYTHING.

So, I guess my question is: Does anyone else have severe joint pain and have they been able to control it with anything?

I have an appointment with a Rheumatologist and another follow up with my GI in December---it will be a very long two months if I don't figure out something in the mean time. TIA

Lilja · Post by **Lilja** » Fri Oct 14, 2016 12:02 am

Dear Tcbolander,

Welcome to the forum, you have come to the right place with knowledgeable and kind people, willing to help you.

Yes, I had some horrific joint pains while my CC was at it's worst. But guess what? The pains were not due to any arthritis issues, and the doctors could never pinpoint where they came from. But, as I was healing - through the correct diet as well as increasing my magnesium and vitamin D3 - the D subsidied, as well as the pains. It took some time, and I had to stay on Entocort for 9 months, before I could see any light in the tunnel.

I'm sure that the reason why I started healing was my decision to abandon gluten, dairy, soy and eggs and just concentrated on well cooked meats and vegetables, according to advice given here on the board.

Feel free to ask anything. People here are very helpful and they also have a lot of experience and knowledge.

PS: Make sure to read Erica P-G's very encouraging post "Considering myself a success story until further notice...."

Lilja

jlbattin · Post by **jlbattin** » Fri Oct 14, 2016 6:48 am

Just curious as to why you are weaning off of the Entecort/Budesonide so quickly...............it takes a slow gradual weaning off of it or most people do experience a relapse...........

Did you also change your diet during this time?

brandy · Post by **brandy** » Fri Oct 14, 2016 6:57 am

Welcome, I agree with Jari, if the budesonide (Entocort) is working why are you getting off of it? On the board we find being on it 4.5 months- 5 months- 6 or 7 months or longer with a very slow wean off is best. Six weeks is not enough time to do much of anything and too short of time on Entocort = reflare (like original flare.)

Yes to joint pain. Eliminating gluten and dairy 100% took care of the joint pain but it took awhile. i.e. it took about 6 weeks for the pain to go away, not days. I did not take anything for pain but it was bad enough I could not walk around the grocery store. We cannot take nsaids. We can take tylenol only. I'm now walking 10 miles no problem.

Diet changes are very key to getting into remission.

Post by **tex** » Fri Oct 14, 2016 3:42 pm

Hello TC,

Welcome to our Internet family, We consider ourselves a family because no one truly understands this disease unless they actually have it, and that seems to apply to most GI specialists, also. Here, we all understand the disease because we live with it every day. Your gastroenterologist seems to be thoroughly confused and lost, (regarding understanding this disease). And as Jari has pointed out, the fact that your gastroenterologist has prescribed Entocort for a treatment period that is way too short to provide any meaningful treatment benefits, reveals her or his unfamiliarity with treating the disease.

As Lilja and Brandy have pointed out, the joint pain, backaches, and headaches that you describe are very common with MC. Many of us also have migraines and nausea. About 15 years ago my knees were so inflamed that I had to use a cane to get around on the really bad days. My left elbow was inflamed and several of the fingers of my right hand had inflamed, swollen joints. Getting out of bed most mornings was a form of cruel and unusual punishment, because between the chronic back pain, joint pain, headaches, and gut pain, I felt as though I had been hit by a truck during the night. Like you, my rheumatoid factor was also negative.

Of course my doctors blamed my arthritis on "getting older", but apparently I must be getting younger, instead, because after I changed my diet, and my gut slowly healed, all my symptoms went away. Today I still have a few crooked, twisted fingers as permanent proof of the severity of the arthritis, but none of my joints are inflamed and I don't even remember what I did with that cane, because my knees are fine.

If you make the right diet changes today, by the time your rheumatologist appointment rolls around, you should be able to happily cancel the appointment and never look back.

Again, welcome aboard. Today is the first day of the rest of your life, and with dedication and effort, you can have the power to make the rest of your life happy, fulfilling, and symptom-free.

Tex

Gabes-Apg · Post by **Gabes-Apg** » Fri Oct 14, 2016 3:59 pm

welcome!

in line with what has been suggested above, I was age 40 when diagnosed and was experiencing severe joint pain in ankles and knees, to the extent that i struggled to walk up and down stairs etc.

When I found this group, removed all the major inflammation triggers the joint pain and brain fog faded away...

if you need some help with making the diet changes, keep reading posts and discussions. The success stories area and our guidelines to recovery section has good information to help you.

hope this helps

tcbolander · Post by **tcbolander** » Fri Oct 14, 2016 11:05 pm

Thank you so much for all of your replies! As far as the Entocort, the GI said I shouldn't be on it for a long time so she prescribed a 8 week taper. She also said diet didn't help even though I asked specifically so, no, I did not do any diet changes. The taper ends this Thursday. I'm hoping by changing diet I can school my GI at the next appointment (nicely of course).

The information out there on MC is so choppy that I literally cried when I saw this forum and so many people who understood what I was going through. I'm also so humbled that you all took the time to reply to my question on joint pain. It stinks to be treated like it's no big deal because it isn't Ulcerative or Crohn Disease. I am so grateful that it isn't either of those and that surgery isn't in my future, but my symptoms are real. Thank you for the validation.

Tex, I know what you say when you say "hit by a truck". I didn't want to go into all the symptoms on my initial post but yes--nausea, pounding headaches, all over joint pain...it is all there. Yesterday I had a funnel cake on an empty stomach which put me into "hit by a truck" mode. It was then that I decided I needed to take this into my own hands and requested to join this forum and get serious about diet changes. I'm so glad to know that it was life changing for you and I would love to ditch my rheumatology appointment!

It gives me so much hope that so many of you have healed by diet change. I have a daughter with Celiac so going completely GF will be easy. Dairy, soy and eggs are going to be harder to drop. I've noticed that I'm extremely sensitive to sugar and fructose in fruit too so I'm ditching those. I will miss the sugar but I'm done being an invalid.

I will keep reading posts and discussion boards and will definitely read Erica P-G's success story.

I do have a question about diet though: Do we have to be as strict as someone with Celiac or is it ok to have some cross contamination?

Thanks again!

Gabes-Apg · Post by **Gabes-Apg** » Sat Oct 15, 2016 12:15 am

Do we have to be as strict as someone with Celiac or is it ok to have some cross contamination?

this kinda depends... in the early days of healing, contamination can cause major issues.

down the track - it does for some people, and not so much for others.
inflammation in the body can be due to multiple things - for me, if i had a stressful week, and/or had exposure to additional enviro type toxins then i am more likely to react to contamination. If it has been a good week then it would be highly unlikely that i would react to contamination.

reactions tend be cumulative, small amounts here and there dont tend to cause issues, but too many small amounts in certain period of time sort makes us 'bubble over' and can cause a flare. (does this make sense?)

for many here, that do react to stress, external/environmental type triggers, a good way to minimise risk of reactions is to be as strict as possible with the eating plan - as it is the thing we can control the most.

Dairy, soy and eggs are going to be harder to drop.

it does seem like that at first, but once you figure out safe ingredients, safe meals etc it is easy. as you read through discussions you will see lots of meal ideas / snack ideas... the best way to approach the eating plan changes is that you are moving from processed type ingredients to whole foods

hope this helps

tcbolander · Post by **tcbolander** » Sat Oct 15, 2016 1:12 am

Thank you Gabes. That helps so much!

jlbattin · Post by **jlbattin** » Sat Oct 15, 2016 8:59 am

I will miss the sugar but I'm done being an invalid.

I was probably one of the biggest sugar aholics there was around.........and when I cut everything out and ate only chicken and rice for a long period of time to get some good healing, I learned to live without it...........now, too much is not my friend either, but I can have a little bit now and then........but once you've gone without it, you don't miss it anymore.

tcbolander · Post by **tcbolander** » Sat Oct 15, 2016 10:51 am

I love sugar too. I'm glad to know it is a craving that will go away. Thanks Jari.

humbird753 · Post by **humbird753** » Sat Oct 15, 2016 10:36 pm

Welcome! You're already getting a lot of good information from what others have posted. I just wanted to say hi and welcome you to our family. It sucks, but it is awesome when you know you are with a group of other people who know what you're going through, and you can learn so much here. We definitely understand.

sunny · Post by **sunny** » Mon Oct 17, 2016 9:30 pm

Another welcome! Funny how we end up in this place where we find hope and understanding plus information to help us deal with this miserable disease. I'm glad you found us....keep reading the info provided and also the older posts .....they all hold so much info to help with diet, doctors & discouragement. There's a search function you can use to find info on the areas you need help with. Plus all the lovely people who share with each other can bring sanity to the crazy life we are living.
Sunny