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Crohn's Disease Forum » Your Story » Joint pain, fustrated


09-11-2013, 05:21 PM   #1
forte
 
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Location: moncton, New Brunswick
Joint pain, fustrated

ok im new to this..first of all i will tell my story.. in 2011 i became very ill.. thought i had stomach flu,, turned out i have crohns , i was placed on the surgery list since i have a foot and a half of my small intestine ulcered and blocked, but my GI decided to start me on Remicadee.. it worked perfectly along with the lovely prednizone (nasty drug) but about 6 months after treatment i started with joint pain.. my knees mostly.. and now 2 years later of treatments every 6 weeks.. i am in so much pain.. my joints are sore.. i can barely walk on some days the swelling and pain in my feet is crazy.. i wear slippers at work.. but it is getting worse and worse.. i dont know what to do anymore.. yesterday was my worse episode.. i was sitting there watching tv and felt a tightness on my forehead. so i passed my hand and omg here is a huge bump felt like a bump that would be cause if i banged my head and hurt just like a bruise. but i didnt hit my head.. so i panicked. went to see my family physician and she says nothing to worry about.. it is not red.. helloooo it is swelling on my head.. what next?.. , i think the remecaide is doing havoc on my body and i cant handle this anymore.. there is days where i get home from work and lay in my bed and cry with pain.. i am 42 yrs old and walk around like i am 82.. i am so tired.. i was a very active person, and the only thing i can do now is barely go to work , and come home and lay there and pray for no pain..
i wish for one day to have no pain at all.. my crohns is fine.. but the price i pay for Remicadee and then suffer and lose out on the quality of life.. i used to hike and go to the gym ,, now i can barely get up off the floor if i get down on my knees..
the joint pain and swelling moves around from body part to body part.. feet, ankles , knees. elbows , shoulders and wrists. oh and the lovely swelling of the fingers.. i cant take this anymore..
09-11-2013, 06:38 PM   #2
nogutsnoglory
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I'm sorry you are in excruciating pain. Have you discussed these symptoms with your gastroenterologist? They may be a side effect of Remicade but it is possible you have another autoimmune condition that's causing this.
09-12-2013, 05:05 PM   #3
forte
 
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Thank u for the reply!! I did speak to my gastrogist but his answer is steriods. And NO i am not taking that route There must be other options. The pain today is in my hands , i cant pick
Up anything . And i cant seem to get comfortable. Plus with the weather i think that doesnt help either is there anyone going through the same thing ?
09-12-2013, 05:59 PM   #4
VintageAnn
 
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Hi Forte,

I had this happen to me on Remicade. I was on it for about two years and by the time I was taken off the drug I thought I was almost an invalid. I could walk only short distance because it hurt so much. All of my joints hurt. It hurt to touch my skin. My GI said that it wasn't the Remicade and he thought I had Fibromyalgia. He referred me to a rheumatologist. He said, yep Fibromyalgia. I knew they were wrong. I could just feel it. I kept bringing it up to my GI but he kept telling me it's not the Remicade. Finally after having the same GI for 11 years I decided to change before I ended up have problems that are not reversible. I remember the heels of my feet were so sore and tender I could barely walk. The GI referred me to a podiatrist. Nothing worked. Nothing. His answer to everything was steroids.

I found a new GI and within 30 seconds of my first appointment she told me I was allergic to the mouse protein in the Remicade and switched me to Humira. It took about 4-6 weeks for my body get rid of the Remicade but when I did I felt like I had been reborn. I don't mean to sound dramatic but I really did think I was going to die. It was that bad.

If you can't get your GI to listen get a second opinion or find a GI that will listen to you. You sound so much like me when I was on Remicade. I am praying for you.

Ann
__________________
Crohn's Disease official diagnosis 2000, problems prior to diagnosis began in my teens

Currently on Humira

Past treatments:

Asacol
Colazol
Pentasa
6-MP
Remicade
Cipro
Flagyl
And lots and lots of the devil drug PREDNISONE

"Don't let a disease define who you are"
09-12-2013, 06:38 PM   #5
wildbill_52280
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try the Specific Carbohydrate Diet in addition to your meds. you may be able to lower your meds on this. this is all i have been doing for 4.5 years, no drugs for me thank you.

no lactose(milk sugar) get calcium from cheese like mozzerela and supplements, no sucrose(refined sugar and most fruits). this starves most of the bacteria that cause diarhea.

i eat lots of whole wheat(500-700 calories) i make myself and can only tolerate gold medal brand whole wheat flour, and 300 calories from instant oatmeal, 250 calories from refried beans, and an entire bag of frozen broccoli and cauliflower everyday. i consume only 1500 total calories a day, then also helps inflammation and is known as a calorie restricted diet.

My diet is super strict and i have no diarhea and never had any surgery or complications. You may not have the same experiances as me though. i do not make the yogurt the book recommends as it still contains too much lactose.


im currently taking a small dose of lialda, any higher dosage gives me joint pain. it may actually be the medication causing this symptom.


also, consider trying a fecal transplant, its been shown to cure ulcerative colitis and seems to cure crohns too. more info-http://www.crohnsforum.com/showthread.php?t=52400


here is a direct quote from the 2003 UC study on fecal transplant-

Although these are case reports several observations can
be made. All patients had documented idiopathic UC with
an absence of detectable infective agents. Complete reversal
of UC was achieved in all 6 patients following the infusion
of human fecal flora. All patients ceased anti-inflammatory
therapy within 6 weeks and did not require further treatment
during the extended follow-up period. After 1 to 13 years,
patients remained asymptomatic
with a healthy colonoscopic appearance and normal histology. Though there is little doubt that UC can go into clinical remission, chronic UC has not been known to spontaneously resolve both colonoscopically and histologically without relapse for up to 13
years, as observed here. To our knowledge, these 6 cases
document for the first time the total disappearance of
chronic UC without the need for maintenance treatment.
This is an unprecedented finding that demands explanation
through further research.
09-13-2013, 05:14 AM   #6
forte
 
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Thanks for the reply. But i am on a strict diet and i cant eat any fiber cause i then have to run. Bread is a big no no for me. Somedays things r so nad with my diet i dont eat til i get home because where i work i cant ne running to the washroom . I know alot of it has to do with Remicadee because as i creep closer to my next treatment my pain is getting better. Which i am glad. Today i woke up and have minimal pain and feel good.
On the bright side of all of this. My spirits r still good. My attitude is good . I guess this is what keeps me going.
09-13-2013, 02:08 PM   #7
forte
 
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wow Ann thanks.. what you described to me is EXACTLY what i am going through.. there is days that i can barely walk.. and with the job that i have.. requires me to walk alot.. and i love my job.. so i am at the point right now that i am so tired of the pain. i get alot of joint swelling also. right now i am waiting to see dr for arthritis. but i know it is not that.. i know everything has to do with my Remicadee.. i have a treatment coming up at the beginning of october and i am seriously thinking of not going.. because i cant handle the pain.. i miss walking.. i miss going to the gym.. i miss all out door activities, normally i am a very active person and this is killing me..
I am going to contact my GI this coming week and meet with him and tell him i am fed up.. i am not dealing well with the Remicadee. but one thing is when they did blood work i am 1 in 1000 that has antibodies against one drug. so they cant give it to me becauce i can become deathly ill. my cousin was placed on the drug and she ended up in the hospital for 2 weeks in intensive care, because she has the same antibodies as i do..
i just need answers.. more and more my life is not what i want it to be.. i feel like i am slowly dying and i hate it.. .but on the brighter side.. my spirit and attitude didnt change.. i am still smiling and happy go lucky besides the pain.. i actually dont let it stop me.. i bare through it.. and relax when i can..
i really thank everyone who is sending messages.. i truly appreciate it.. i know there is so many ppl out there that is living with the same disease and i really want to know everyone's experiences. thank you.. thank you thank you.
09-13-2013, 11:54 PM   #8
arkigal51
 
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Location: Rogers, Arkansas
I had the same problem. It started at work, severe joint pain. I was taken to ER where I was hospitalized and diagnosed with Serum Sickness. Allergic to the mouse serim in the Remicade. I was also switched to Humira. The humira is nice cause I gabn give myself the shot at home...............Good luck, Plz talk with GI about the possibility of this. I went through terrible Pain before they realized
09-14-2013, 12:33 PM   #9
forte
 
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Thank you arkigal51 , I know there is something that is wrong. i know it in my body and yet the dr decides to give me steriods.. (which i will forever refuse) it is a nasty drug...
today my pain is not good.. im ready to scream..
i will look into the humira hope that helps..
09-16-2013, 02:19 PM   #10
Ruthknitting
 
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Location: Edinburgh, United Kingdom
Hi Forte, I have just joined the forum tonight! as I too am in terrible pain. I was hospitalised for 4 weeks. I was diagnosed with CD last Sept and now have 3 ologists. Gastroenterologist Rheumatologist and Neurologist!!! All I know is I am very tired and my joints are painful. My GI team are very good and I know I have to trust them. It is frustrating that they cant fix us straight away and they have to try different medications to see which one will help us. At the moment they are trying a combination of drugs for different symptoms:-
Mercaptopurine - Crohns
Adalimumab - new diagnoses of Enteropathic Arthropathy (Arthralgia) my symptoms are Painful soles of feet, ankles, toes which have nodules on them (shoes dont fit). Knees swollen with fluid, look like elephant legs. Hands are very painful with fluid and nodules on the fingers too. Base of back becomes sore if I'm on my feet for a little while or if I have been sitting down for a while I need help to get up on my feet! I wake up every night and need to turn and shake my arms out as they are numb. Getting out of bed is terrible, trying to stand and walk.....well you know what I'm trying to say. It is early days for the Adalimumab which seems to help me for 4/5 days of the week. This is a living hell but we need to keep positive and talk to each other and the professionals.
I too was taking Remicade but my immune system fought back after the fourth dose. Itake Tramadol and Paracetamol for pain but it is short lived. Morphine for when its bad but it makes me itchy all over. Anyway sorry to go on about this but it helps to read that I am not alone, maybe you feel this too?
09-16-2013, 06:14 PM   #11
forte
 
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wow ruthknitting i know what your going through.. i stayed home from work today because i couldnt even walk.. it is nasty.. i know i go to bed at night and just regular tylenol dont help with the pain. i have to take tylenol 3. and that at least let me have 4 hrs of sleep. i am so tired. and i know what you are saying with the numbness. and my knees are the worse.. sometimes i feel like they are just going to buckle out from underneath me.. i work at the school and last week we had lockdown drills, so i had to sit on the floor with the students to hide.. i felt like a fool when i tried to get up and couldn't it was sad because one of my students had to help me up.. but i am trying to remain possitive and still go on with my days . it is hard but as soon as i can get into see my dr. i will be fine.. but he isnt going to be in his office til the 7th of october.. so i have to suffer it out til then.. keep your chin up. and keep in touch..
and it does help to be on here and read that your not the only one that is going through this. and you dont feel so alone anymore..
09-04-2017, 12:27 AM   #12
Justanothercp
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wow ruthknitting i know what your going through.. i stayed home from work today because i couldnt even walk.. it is nasty.. i know i go to bed at night and just regular tylenol dont help with the pain. i have to take tylenol 3. and that at least let me have 4 hrs of sleep. i am so tired. and i know what you are saying with the numbness. and my knees are the worse.. sometimes i feel like they are just going to buckle out from underneath me.. i work at the school and last week we had lockdown drills, so i had to sit on the floor with the students to hide.. i felt like a fool when i tried to get up and couldn't it was sad because one of my students had to help me up.. but i am trying to remain possitive and still go on with my days . it is hard but as soon as i can get into see my dr. i will be fine.. but he isnt going to be in his office til the 7th of october.. so i have to suffer it out til then.. keep your chin up. and keep in touch..
and it does help to be on here and read that your not the only one that is going through this. and you dont feel so alone anymore..


Any updates on your foot/joint pain? Was is related to remicade? Did things get better?
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