pain with crohns and Dr's shuffle you to another Dr.

by melinda

Are you in Remission? But have PAIN in your neck, shoulders,elbows,lower back, both hips, both knees , both ankles , and both feet? And no Dr. wants to help you? They just shuffle you off to another Dr.

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pain with crohn's NEW
by: Annette Young

Hello there,

Many people do not realise that Crohn's disease can have such far-reaching effects. Of course primarily people associate Crohn's with severe abdominal cramps, diarrhoea, feeling sick etc and of course this is typical, but Crohn's can also cause inflammation in the joints and even cause inflammation in the eyes. Many people complain of aching limbs and that their legs really hurt.

Unfortunately, diagnosis can be quite difficult because the symptoms may seem typical of an arthritic condition and doctors can falsely diagnose sometimes simply because the symptoms are very similar to the likes of rheumatoid arthritis.

Medication however can also cause severe side effects and it is worth checking with your doctor just to ensure that the medication you are on is not causing these extra pains in your limbs as a result.

I have spoken to many people who have literally despaired of going backwards and forwards to their doctors seeking additional help and not feeling that they are getting results, so you're not alone in your sense of frustration. Unfortunately, you do have to stand up for your rights and demand help sometimes.

Just because the main symptoms of Crohn's disease has apparently gone into remission, it does not mean that the other side effects will have. Until it is properly diagnosed or you ascertain whether your medication might be causing the problem it is difficult say for sure.

Crohn’s might be difficult to diagnose but there is a reason for this, many of the symptoms echo other conditions but you know how you feel and you have to ensure that your doctor understands this and treats you accordingly. Badgering the doctor is probably the last thing that you will feel like doing but you have to get results.

I hope you feel better soon.

pain with crohns and Dr's shuffle you to another Dr. NEW
by: Lydia D.

Excellent news and great that your consultant is supporting you.

I suggest that you look up your drug side-effects and interactions in the future at or

Most medication causes gut problems and a modicum cause joint and muscle pain. I suggest that you hang on to the PIS (patient information sheet). I file them all, for future reference and as soon as I start getting any new symptoms I read through them all - is somewhat more comprehensive though. Be aware that not all side-effects are listed anywhere.

I also refer you to Suzy Cohen's book "Drug Muggers". She writes about medication and how they deplete the body of nutrients. For example, statins deplete the body of coenzyme Q. You only need to be missing one nutrient for your metabolism to go off course.

I refer you also to the term "chemical cosh", which is a British term, but worth knowing about. It arises when doctors want to keep the patient out of their hair and involves the prescription of several very strong medications many of which are psychopharmaceuticals and can have rough side-effects.

All the best,


Joint Pain NEW
by: Anna

I had Crohn's diagnosed 2 years ago, have been in hospital twice, lots of antibiotics, and steroids, for maintenance I was on Azathioprine. The pain in my joints was so sore at times I felt disabled. I was sent to Rheumy and was put onto Sulfasalazine, which definately helped. Recently I felt awful, bloated body, pain all over body but particularly in my left shoulder with pains shooting down my left arm. I got very worried and thought I was never like this before I got all this medication. So I started taking less and less azathioprine and at the end of a week I had stopped. Instead of 4 tablets of Sulfa, I reduced it to 2 and today I haven't had any. I am taking fish oil supplements, evening primrose supplements, probiotic vitamins and minerals, B12, and Slippery Elm tablets. I have been doing this for 4 weeks and feel great, my body feels normal, slight pain but I am walking normally and feel as if I have a lot of energy. I have also cut back on my food and have tried optimising my food which I found on the internet to try and make my meals more alkalising. I saw my consultant today as he made me a special appointment, after I phoned to say I had stopped taking my tablets. (also stopped my high cholesterol tablets and Citalopram antidepressant). All my blood tests were good and he said to keep doing what I'm doing and see what happens, he is going to book a colonoscopy for a few months time to check my insides. I am not advocating that others do the same, as everyone is different but I feel some of these medications cause joint pain like Aza. and if I continue to feel like this I can enjoy life as I like to play tennis, and like the other lady after a game of tennis I would be in a lot of pain for days. I am definately looking into diet to control my Chrons. My Chron's is in my colon only, near the ileum. I will let you know how I progress.

Pain and reasons NEW
by: Dannielle

I found out through my mri that the pain I was having is due to herniated disk in my neck, and lower lumbar region. I have three bad disk in neck and that causes neck pain and lock ups, shoulder pain and breast pain as well. I will be doing surgery next week and hope it gets better with therapy. I still have to eat right, have a better attitude and dont moan about my body issues and exercise more even when I dont wanna. ;)
I think that everyone who made there comments are correct and should think twice what your body actually is in need of before taking anything. Too much of anything could cause things as well. I know having crohns isnt easy and having pain sucks but I think it can be only a few things of reasons why you are in pain. Best the luck to you and croonies.

pain with crohns and Dr's shuffle you to another Dr. NEW
by: Lydia D.

Scotty, I recommend that you take a vitamin B complex for pregnant ladies, in addition to supplementing with vitamin C. The B and C vitamins are water-soluble. The upper limit is set by the amount of vitamin B6. In Australia this limit is 50 mg vitamin B6 per day. In the USA it is 100 mg. I would stick to the 300% RDA.

The fat-soluble vitamins (A, D, E, K) can be toxic in increased doses and care should be taken - stick to 100% RDA.

Mineral deficiencies can also cause pain in the joints and extremities.

If you are on Omeprazole or another proton pump inhibitor, you will not be able to absorb vitamin B12 and will need to take it sublingually or by injection or infusion.

This patient describes vitamin B12 deficiency symptoms.

Also be aware that medication can cause joint pains. Look up the side effects of all your medication here:

Lack of exercise and/or bad posture can contribute to back, hip, knee, etc., pains.

I can only guess at what may be happening to you, but suspect that it something listed above. I suggest that you keep a food/mood/symptom/medication diary to work out what is happening to you.

I suggest that you discuss being checked out for osteoporosis with your doctor. Anyone who is on steroids should be taking calcium and vitamin D prophylactically.

Steroids, cola, poor diet and lack of movement, etc., all eventually cause osteoporosis.

Teeth Pain NEW
by: Melinda

I had the same thing ask your Dr. for some Mary's Magic Mouthwash. They use it for Cancer Patients, because they have MORE PAIN than we do, SORRY to say that , but it is true.I use to work in Home Health Care and when I got done with MY job I was asked to deliver Meds.This mouthwash really WORKS! But I ended up going to a dental specialist. I had to get 2 root canal's and get my upper gum sliced open, to do a root canal that was NOT done and had a fake tooth, OH YES,I did have a knock out pill to take! I went back to work the next day.The inside of my body is in Remission. BUT, it is effecting ALL of my joints, NO shot in my back is going to help me. Reason is PAIN moves around, my back and hips could be fine for a day or to, during that time ,my neck,shoulders,elbows hurting very bad.Other time'S ENTIRE BODY HURTS. I WISH YOU WELL. Melinda

Joint and teeth pain NEW
by: Scotty

I was diagnosed with Crohn's 12 months ago but the joint pain is totally debilitating, I have pain in my neck, shoulders, wrists, fingers, knees, heels and now my teeth hurt, there is nothing wrong with them but they have become extremely sensitive. I have been trying everythimg to stop the pain. My son is a Doctor but the impression I get from all Doctors is you just have to put up with it or take pain killers but don't moan. I'm going to see a rheumatologist in a months time and I am going to start taking vitamin B12 to see if that helps. I play tennis but if I do manage to play I can hardly walk for the next week. If anyone has managed to rid themselves of the joint pain I would love to hear from them as I am very active but I now feel like a woman in my 80s, HELP.

pain with crohns and Dr's shuffle you to another Dr. NEW
by: Lydia D.

I get some of these pains when my vitamin B12 infusion is due. Try taking sublingual B12 or a daily vitamin B-complex tablet (for pregnant ladies).

You might have got depleted in B12 during your last flare. This is the only water-soluble vitamin that is stored in any great amount in the liver (1-2 years worth).

Long-term medication can interfer with the uptake of and result in the depletion of various micronutrients in the body. Proton pump inhibitors, such as Omeprazole, can result in vitamin B12 deficiency and osteoporosis. Nerve damage caused by long-term vitamin B12 deficiency is irreversible.

It sounds to me as though you need a referral to a physiotherapist.

IBD patients have a high risk of osteoporosis and the associated fractures. Some of your pain might be due to osteoporosis and it would be worth discussing a bone density scan to check this out, if you haven't already had it done:

pain with crohns and Dr's shuffle you to another Dr. NEW
by: Melinda

I have all ready went through the MRI, and there was NOTHING FOUND. To that Dr. there was NOTHING WRONG with me.If there was any way possible I would go to Chicago,IL. To the Mayo Clinic, they REALLY know this disease! I also have spots in my lungs.I have had a small one on my left side but now I have a couple on my right side.The one on the left has gotten bigger since a year ago. I go back and get another test done to see if the ones on my right side have gotten bigger. If so, they will do a biopsy. Everything that is wrong with me is from the Disease. I just can not find a Dr.that KNOWS EVERYTHING about Crohns, all I am is just a piece of lost paper blowing around in the wind. Thank You for writing, Please keep in touch. Everyone with this disease I am really concerned about it is a Bad Disease. Thank You and GOD BLESS, Melinda

Yes This is me too NEW
by: Dannielle

I can't believe there is some one else out there that has same issues. At the moment I have had pain neck to where lock and stiffness happens and Im not mobile at all. It is very frustrating and doctors just say I have fibromalgia which isnt the case. I have severe neck, shoulders, whole back area, hips, knees, ankles and feet issues as well. I am seeing a spine doctor and will go do mri of cervical spine and see where this takes me. I have tried everything and my muscles are always tight and stiff and i go to therapy but never am I at ease well fully.

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