What people with IBD should know

I am often asked, “What would you tell someone recently diagnosed with IBD?” So, this is what I think you should know! Look out for clickable links in this blog, leading to more detailed information! For many, a definitive diagnosis is a massive relief after a long period of being unwell. This does not mean that acceptance is easy, after all, you have just been diagnosed with a chronic disease which has no cure. Do NOT panic, we’ve got this, life is not over! It is worth pointing out that no two IBD patients’ lives are the same. The disease does not always manifest in the same way, and the fact that a treatment works for one person does not mean it will work for another. This makes IBD notoriously difficult to treat. That said, some IBD patients may have one flare, find the right medication straight away and never have another, and that is fantastic! For the rest of us, being diagnosed with Crohn’s Disease or Ulcerative Colitis may mean some lifestyle changes and som

A new diagnosis - fibromyalgia

I waited SO long for a referral to Rheumatology. I even swapped GPs because I didn’t feel like my original ones were listening. So, when I finally got a referral, I honestly almost cried. I actually had to go through my IBD team, because they’re the only ones that know me well enough to KNOW that when I say I am in a lot of pain, I mean a lot. 

Then came the wait for an actual appointment. I even chased this up out of frustration, but the average wait is 26 weeks, and for some reason, it took a month for Rheumatology to actually receive my referral, which was literally just sent from a different department in the same hospital. 

When I got my appointment, I almost cried again! It was only days away! I sat and wrote down everything I wanted to cover. I was so worried about missing something, and so scared of not being taken seriously and left to deal with this chronic pain. 

When the day finally came, I wasn’t expecting much. I left the house with three sheets of paper:

·        One was basically a timeline of when things started, and how the pain had developed and spread over time. I wrote down all of the non-joint related stuff too, because my GP was under the impression that they were all linked, but couldn’t prescribe any treatment until I had a diagnosis.

·        The second sheet had three columns, the first named the symptoms, the second had the impact that has on my quality of life, and the third had what I had tried to alleviate it.

·        The third was just a list of my current medications and a list of the tests that had already been done and what the results of those were. 

Years of living with IBD has taught me not to expect much from initial appointments for new issues, other than some tests being ordered. So, I was really surprised when I entered the room to find that the consultant had already reviewed all of the results of my previous tests! Jaw on the floor! 😅

I have never felt so listened to in my entire life. We talked for 40 minutes. He listened and understood what I was saying. He poked, prodded, nearly got punched, and had me moving around at all angles. Then, he diagnosed me with secondary fibromyalgia (triggered by the latest surgery). He also wants to run some additional tests such as an MRI, but is certain that even if there is something else, which he doesn’t think there is, I still have fibromyalgia. 

I spoke candidly about my concerns that if I have a diagnosis of something like fibromyalgia, then no new symptoms or pain will ever be taken seriously. He assured me that that shouldn’t be the case. Time will tell on that one! He even offered to call it something else if that helped (which was three words long, but I have no idea what any of those words were). I said if they meant the same thing then it made very little difference!

He said that I was doing everything right in terms of walking and yoga, and that he would also refer me to a physio to show me exercises and give posture advice etc, which should prove useful long term. He could also see (even with my face behind a mask) that I was getting a little distressed, and he did his best to comfort me. He told me that I should not feel embarrassed or ashamed in any way. 

It wasn’t embarrassment or shame that I was feeling, it was just so many things all at once. I had been taken by surprise. I did not expect to leave that appointment with a diagnosis of anything, or any kind of treatment to try, but there I was, with both! I felt relieved that someone was listening, and I felt worried about THIS diagnosis because it’s so hard to understand. I feel a bit stupid, like I’m in pain, but not really, or for no reason! 

I’m not particularly comfortable with the diagnosis of fibromyalgia, because there’s no definitive test. It’s simply a process of elimination of other things. At the same time, I understand that not enough is known about it, or it’s causes yet, and that research is ongoing. I understand that there is a group of people who experience the same symptoms, which is currently just called fibromyalgia, and that they have seen improvements in their symptoms with certain lifestyle changes and medications. Nearly every single symptom we talked about I struggle with, from fatigue and joint pain, to constantly sore muscles and skin sensitivity which makes me want to punch my partner in the face when he touches me…

It almost seemed like my pain wasn’t real until someone put a label on it, and that’s how I’ve felt for the last two years. I just want a little relief and a better night’s sleep! So, if having fibromyalgia as a diagnosis helps me get there then I’ll take it. 

I will keep doing what I am doing, and more on top. I will take my medications, I will do my physio, and I will remain positive that a little less pain is not too far away! 

Here’s a little info about Fibromyalgia that I’ve pulled from Versus Arthritis – because that was the booklet the Rheumatologist sent me home with. 

What is fibromyalgia?

Fibromyalgia is a long-term condition that causes pain and tenderness all over your body. It’s thought to be caused by your nervous system in your brain and spine not being able to control or process pain signals from other parts of your body.

Fibromyalgia can also cause:

·        forgetfulness or poor concentration

·        stress, worry or low mood

·        tingling, numbness or swelling of your hands and feet

·        headaches

·        restless legs syndrome – a tingling, uncomfortable feeling in your legs, especially at night

·        irritability, or feeling low or weepy

·        feeling like you urgently need to wee, especially at night

·        painful menstrual periods

·        diarrhoea, constipation and stomach pain – sometimes separately diagnosed as irritable bowel syndrome (IBS)

·        increased sensitivity to things like cold, sound, knocks and bumps

·        tender or overly sensitive joints and muscles


Fibromyalgia isn’t caused by damage or an injury to the body. But it does increase the sensitivity of your nerve endings, which means you could feel pain from a small amount of pressure or minor knocks. 

Studies have shown that parts of the brain that register pain react differently if you have fibromyalgia. This means you feel pain when other people just feel uncomfortable or stiff.

Symptoms often start after an illness, accident, or a time of emotional stress and anxiety.