Crohn's Disease Forum » Support Forum » Vent Away » Any comments please

06-03-2013, 07:13 PM   #1
Join Date: May 2013
Location: Alberta
Any comments please

2001 diagnose with Crohn's

My knee caps are grinding and feel like they are about to explode walking and standing makes my knee caps and calve ache, burn, throbbing pain hard to rest them
My hips have a numbing pain and feel like they are giving out
Lower back has more often lately been so hard to bend over the sharp intense pain sometimes stabbing sometimes constant straight pain
Shoulders,arms,shoulder blades have been cracking a lot of numbness and strong aches
My elbows have been numbing seizing causing scratch sharp pains in both of them
Neck has been stiffening lately a lot
Fingers thumbs- cold blue my thumb was hurting so bad woke me up three times Monday night so intense
Feet has been throbbing and hurting my ankles feel throbbing to much pain in feet want to restraighten them think they causing knee problems
Both Wrists has been hurting a lot sometimes hurt to even hold a pen to much pain for little weight
My stomach is causing me a lot of un- ease and cramping

I've been in extreme joint pain in my knees and ankles. Walking is painful. Last night I couldn't even sleep because of the pain. No idea if it crohns or the arthritis. Or a combination of both. . My wrists and fingers stay achy and blue they have been blue and so cold so I just deal with it. It is so aggravating to feel like this. I am tired feeling drained and so drowsy, nausea, and extreme fatigue
my family doctor is refering me to a rheumetologist and think i could have raynaud's disease aswell
06-03-2013, 10:25 PM   #2
PsychoJane's Avatar
Join Date: Mar 2011
Location: Quebec

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It is sure quite a lot to deal with that much pain Sorry you are going through this.
I am in no mean a doctor but the turning blue aspect of your finger does sound like Raynaud syndrome (or disease). I am wondering, have you been diagnosed for you arthritis/ is it Rheumatoid arthritis? I asked that since you said that your GP referred you to a rheumy, I would have assumed you already had one.

Out of curiosity, do you have any other skin manifestations than the blue fingers? Also, may I ask what type of medication you are on for your Crohn if any?
Diagnosed UC 1999 then refractory CD.
Past Meds: Prednisone, asacol, cyclosporine, cyclophosphamide, mp6, Humira

Currently taking: Omega-3, D-3, med-free for the time being.
~~Oh! n sorry if what I write seems strange at times, English is not my main language!~~

You'd like to chat and feel facebook would ease this point,
send me a private message and i'll do so =)
06-03-2013, 11:14 PM   #3
Join Date: May 2013
Location: Alberta
hi thank you for your reply i never got diagnost withany arthritis at this moment because i have been to stubborn to go in untill recently i have to see the rheumy i guess cause my doctor doesnt have any idea about Crohn's or my conditionso he told me the rheumy would let me know lol but its been so bad pain i couldnt handle it so i had to go in some of the pills im on are prednisone im weening off them and buscopan 10mg ,pantoprazole,ciprofloxacin,metronidazole,tramadol hydrochloride 100mg i was on humira but it quite working for me
06-03-2013, 11:16 PM   #4
Join Date: May 2013
Location: Alberta
i guess im not going to be stubborn anyore and just start tellig him everything cause this is harsh
06-06-2013, 01:49 AM   #5
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DougUte's Avatar
Join Date: Jul 2010
Location: Kaysville, Utah

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Hi cdm.

I am so sorry you are going through so much right now. I just wish this disease would go away.

I would make the doc hear about it. Not telling them, I think, only is harmful. The doctors can't help us if we don't tell them what is going on.

Good luck at the rheumy. Please let us know how it goes.
Surgery Oct 12, 2010

Crohns Medicines:
Started Humira June 22nd, 2011
Increased to weekly injections on November 1st, 2016
Due to the insurance company, Humira ended on January 31, 2017.
Started Entyvio February 9th, 2017
Loperamide 3 capsules twice a day
Vitamin B6, B12, Folic Acid
Vitamin D3 10000 I.U.
Nature Made Multivitamin
06-06-2013, 08:50 PM   #6
Join Date: Jul 2012
Location: USA

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Dear CDM,
I have been in alot of pain alot like yours. But no turning blue. But I get the throbbing in my shins and arms and my toes and fingers feel like someone is burning them when I am sleeping it wakes me up.My knees grind when I walk and click all the time too and my ankles and elbows too and wrists. It all hurts. My feet and legs get these stabbing burn pains too. I read it could be a B12 deficiency, so I've been taking extra in gel form. I have to go back and get the B12 injections soon. I have one left and was saving it for severe times. Now I may have my Hubs jab me. I went to a rheumy and she put me on antidepressants, Effexor xl for fibromyalgia. That is what she said is the cause. and I can't take humira or any biologic because I am a cancer risk having already had it in 2009. I totally sympathize with you on the pain all over. I can't stand much anymore or walk very far. I used to be nonstop all day long.I feel tired all the time now. It has gotten worse since I weaned off the effexor. So, I don't know if that is the cause, or B12 is low. I am seeing my PCP next Friday and will see if they can help me. My gastro has been of little help and I need to find a new one. I am asking my PCP to recommend a good one. I hope and pray the rheumy can help you and I will be thinking of you and hoping for the best. Let me know how it goes plz, OK? You can PM me anytime if you want or need to talk~OK? God bless ! Teresa

Last edited by 723crossroads; 06-07-2013 at 11:32 AM.
06-07-2013, 06:33 AM   #7
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lizbeth's Avatar
Join Date: Feb 2013
Location: bushmills, United Kingdom

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I'm sorry that you are having so many difficulties, it's very difficult to keep your chin up when everyday is full of pains.

I've just had an mri result of pelvis ans hip that said 'no detectable abnormality', the letter left me in tears as I've been having most of the symptoms you describe and I had really hoped that I would get some answers from the mri, my rheumy thinks it's not related to my Crohns but I know for sure when my tum flares so does my back and hip and other bits he thinks it's a soft tissue problem but what that means I don't know.

When do you have a follow-up appointment? Hope it's soon and that you get some form of relief, good luck and God bless.

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