C Diff and neck pain?

Posted by skolotilin @skolotilin, Tue, Jun 30 12:29pm

I’m a 65yo woman diagnosed with Crohns, ulcerative colitis, anemia and liver cirrhosis. I’ve been seriously ill and hospitalized On and off for a few years, and currently I am very weak. Now I have c diff for the second time. In addition to all the gastric issues, I have experienced extreme neck and back pain for months at a time and then it just stops. Currently, I would rate my neck pain way over 10 (scale 1-10). I don’t have any pain medicine except Advil which helps short-term but I should not use due to my liver. My question is can c diff and/or Crohns be causing my neck pain? If so, what can I do about it and what kind of doctor an help? At this point, I am bedridden and have lost the mental acuity needed to live a normal life. Please help…

Hello @skolotilin, Welcome to Connect. Sorry to hear that you have not been able to find any relief for your neck pain or what's causing it. I have read that Chron's Disease can have symptoms of joint pain but I think only a doctor can give you a diagnosis. Here's some information on the topic.

Crohn's disease and joint pain: https://www.medicalnewstoday.com/articles/324235

There are a couple of discussions on C-Diff that you may want to read through and connect with other members who share some of your symptoms.

C. difficile – Are your guts ever normal again?: https://connect.mayoclinic.org/discussion/c-difficile-are-your-guts-ever-normal-again/
Trying to recover from a c. diff infection (Clostridium difficile): https://connect.mayoclinic.org/discussion/i-am-trying-to-recover-from-a-c-diff-infection-this-started-with/

Have you discussed the neck pain symptoms with your doctor?

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Yes, I have discussed my neck pain with my doctor to no avail. I made an appointment with a rheumatologist but can’t see them until Aug 3rd. Thank you for responding!

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@skolotilin – I am so sorry to hear about your pain in addition to the difficult GI diseases you are dealing with.
Seeing a rheumatologist is a great step now! We do know that Crohn’s is an autoimmune disease connected with arthritis conditions and that it is fairly common to have more than one autoimmune illness. There are some illnesses affecting the spine.
I assume you have not had any X-rays either?
Also, have you had bone density scans? Osteoporosis can also cause problems in your spine affecting your nerves. I also assume that you have taken steroids over the years, which of course is detrimental to bone density.
I have taken a lot of steroids myself over the years for autoimmune GI conditions. It shows in one of my lumbar vertebrae, causing back pain.
Also, if you don’t get the answers you want, see someone else.

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I have Oesteoporosis, and xrays show some arthritis in my neck. After the terrible flare of Crohns in Jan, I took 40mgs of prednisone which helped a lot and then reaped havoc on the rest of my body especially my face. And I do have other related autoimmune diseases such as psoriasis (which is currently in remission). I’ve had physical therapy for a few months at a time over the past 2 years. It helped but then the pain came back. Until recently, I’ve lived my life as an optimist, full of love and spirituality. Now, I’m so weak from constant diarrhea, no appetite and this endless neck pain that I can’t even think straight. Thank you for reaching out to me. I’m so glad I found this forum. I didn’t realize how lonely this illness has left me.

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hello skolotilin Just read about your neck pain and the fact that you have had physical therapy for a few months at a time and it helped. I, too have had shoulder and back pain along with some neck pain and did PT as well and it helped so much, then due to the Covid-19 I had to stop going to PT but have kept the exercises up at home and that works wonders. Could you possibly do the PT exercises at home that you were doing at therapy? Hope things work out for you. BAZ

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Hi baz10! Thanks for reaching out. you’re right about doing the exercises at home, but I lack the energy and commitment. Hopefully when I get meds for c diff, I’ll be able to do more.

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@skolotilin

I have Oesteoporosis, and xrays show some arthritis in my neck. After the terrible flare of Crohns in Jan, I took 40mgs of prednisone which helped a lot and then reaped havoc on the rest of my body especially my face. And I do have other related autoimmune diseases such as psoriasis (which is currently in remission). I’ve had physical therapy for a few months at a time over the past 2 years. It helped but then the pain came back. Until recently, I’ve lived my life as an optimist, full of love and spirituality. Now, I’m so weak from constant diarrhea, no appetite and this endless neck pain that I can’t even think straight. Thank you for reaching out to me. I’m so glad I found this forum. I didn’t realize how lonely this illness has left me.

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@skolotilin Since you have Osteoporosis are you on any med to help your bone health? I'm on Tymlos right now. I'm sorry you have autoimmune diseases. That must be hard to live with. I went to Mayo Clinic at Rochester MN. and had a big 9 hour surgery. I had the best surgeon. I am so sorry you are so weak. I am sending prayers your way to help you.

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@lilypaws

@skolotilin Since you have Osteoporosis are you on any med to help your bone health? I'm on Tymlos right now. I'm sorry you have autoimmune diseases. That must be hard to live with. I went to Mayo Clinic at Rochester MN. and had a big 9 hour surgery. I had the best surgeon. I am so sorry you are so weak. I am sending prayers your way to help you.

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Hi and thanks for reaching out. I’m on prolia for Oesteoporosis and entyvio for Crohns. What kind of surgery did you have?

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@skolotilin,Hi and I also welcome you to Connect, I can't address the neck pain but i had a pretty bad bout with cdiff last jun. I can really understand your not wanting to do any exercise. For the 2 months i suffered with cdiff i was afraid to go anywhere away from a bathroom. But i can say that it did finally go away and now I am very careful to not catch it again. I always have clorox wipes with me when out anywhere and have to use a public bathroom. but the good news is its been a year and have had no issues with it. I also take Lactobacillus Acidophilus a supplement recommended by my doctor to maintain good gut health and I also know that if your are on any antibiotics they can kill the good bacteria in your gut and help the bad bacteria grow which causes cdiff. Thats why Im on the Lactobacillus Acidophilus so you may ask your doctor about that. I hope that helps.
Have a Blessed Day and Hang in there it will get better.
Dana

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@danab, thanks for the recommendation. I’ll ask my doctor. I have a recommendation too. These Assurance diapers are very good at handling accidents with feces. They fit and contain well. They’re at Walmart.

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UPDATE: after one 40mgs dose of prednisone, NO MORE NECK PAIN! Inflammation is the enemy. C diff has stopped too but that was before prednisone. Thanks to all who took time to write to me.

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@skolotilin – That is wonderful news!! I know it is wrong of me to say this, but I love Prednisone. It has made me lose pain so quickly. Pain in my insides from the autoimmune problem, sinus pain and of course asthma.
I also agree that it’s hard to think with pain like that. In the past month I had horrendous headaches( sinus) and back pain from falling cracking a rib too.
I really could not think anything through.
I hope you’ll stay better.
Please return to us with updates! We don’t let you go that easily! There is much for members to learn from your experiences.

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@astaingegerdm

@skolotilin – That is wonderful news!! I know it is wrong of me to say this, but I love Prednisone. It has made me lose pain so quickly. Pain in my insides from the autoimmune problem, sinus pain and of course asthma.
I also agree that it’s hard to think with pain like that. In the past month I had horrendous headaches( sinus) and back pain from falling cracking a rib too.
I really could not think anything through.
I hope you’ll stay better.
Please return to us with updates! We don’t let you go that easily! There is much for members to learn from your experiences.

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Thank you all for the words of encouragement. I’m happy to say that I continue to thrive. The only problem is what prednisone does to other parts of my body with continued use. I guess I’ll cross that bridge when it comes.

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@skolotilin

Thank you all for the words of encouragement. I’m happy to say that I continue to thrive. The only problem is what prednisone does to other parts of my body with continued use. I guess I’ll cross that bridge when it comes.

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@skolotilin I hate prednisone. I always gives me anxiety and makes me crabby. The doctor only gives me pack which starts out with 6 pills and then ever day you decrease one pill. I tolerate that ok. One time I was really sick and the doctor gave me a higher dose and it didn't bother me, must of been because I was so sick.

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@lilypaws

@skolotilin I hate prednisone. I always gives me anxiety and makes me crabby. The doctor only gives me pack which starts out with 6 pills and then ever day you decrease one pill. I tolerate that ok. One time I was really sick and the doctor gave me a higher dose and it didn't bother me, must of been because I was so sick.

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I also hate it, but was in so much pain I welcomed it.

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