Musculoskeletal Conditions Or Joint Pain
Inflammation from Crohns disease can affect your entire body, especially your musculoskeletal system and your joints. Arthritis, or inflammation of the joints, is seen in up to 30 percent of people with Crohns disease. Pain or swelling from arthritis can also cause reduced flexibility, which can present mobility challenges for some people.
Musculoskeletal conditions that can also occur with Crohns disease include:
- fibromyalgia, widespread musculoskeletal pain that includes fatigue, sleep, memory, and mood issues
- inflammatory back pain
- sarcopenia, which includes loss of muscle mass and function and low muscle strength
To manage musculoskeletal conditions or joint pain from Crohns disease, you can use ice to alleviate swelling or heat to reduce pain. NSAIDs or nonsteroidal anti-inflammatory drugs, like Motrin or Aleve, can also help you manage pain and swelling. If youre dealing with mobility challenges, consider yoga or light stretching to improve flexibility.
What Patients Have Told Us Fatigue Feels Like:
physical heaviness just a general lethargy and cant-be-bothered-ness. Its like a kind of physical depression feeling under the weatherJulie, age 47, Ulcerative Colitis
just feeling very, very weary, and no inner energy Im bone weary is the old way of describing it An unfamiliar emptiness, a lack of wanting to do thingsRobert, age 82, Crohns Disease
My body feels two tonnes of weight All my limbs feel very heavyVicky, age 24, Crohns Disease
Being very woolly in my thinkingGary, age 51, Crohns Disease
Overwhelming heaviness you feel like lead you just feel like youre twice the weight you areyou just suddenly feel your arms are like lead and your hairs heavyCatherine, age 49, Ulcerative Colitis
very similar to like minor flu symptoms really. this fuzziness the tiredness is so heavy, its not an ordinary tiredness its so heavy and fluffy and strangeSue, age 58, Crohns Disease
Too exhausted to think
Taking Control Of Flare
Most people with Crohns experience flare-ups that come and go. And unfortunately, its not always easy to pinpoint your triggers. Members of MyCrohnsAndColitisTeam have described flare-up symptoms that last for varying lengths of time depending on the severity. I had one of the worst flare-ups last week. Normally, my flare-up will last for at least three days. It was a whole week this time, leaving me in bed with very bad symptoms.
Severe flare-ups can require you to stay in the hospital. One member said, Its day 12 in the hospital with a severe Crohns flare-up. This flare-up is the worst ever. No painkillers worked for more than a few minutes. Vomiting was miserable and indescribable stomach pain.
Contact your doctor as soon as you notice the beginnings of a flare-up. Early treatment may help you avoid a prolonged flare that interferes with your quality of life and leaves you feeling mentally and physically depleted. Additionally, severe flares may cause permanent harm to the GI tract. Instead of toughing it out, keep your gastroenterologist in the loop so you can receive the care you need.
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Discuss Medications With Your Provider
Antidepressants and narcotics are often prescribed for IBD patients but they can also cause lethargy and drowsiness.
If you are taking these medications and experiencing fatigue, talk to your provider about alternative options. In some cases, a change in medication can make a big difference. By working with your provider, you can find a treatment plan that works for you.
How Is Fatigue Treated
Some people feel less fatigue once they start treatment for Crohns disease.3 In other inflammatory conditions, biologic medications reduce fatigue.3 One theory is that the intestinal lining needs to heal for the fatigue to improve. People in remission from symptoms often still have inflammation in the digestive tract.
If you have iron-deficiency anemia, your health care provider probably will recommend an iron supplement. Iron supplements can be taken by mouth or intravenously. Iron supplements may not be enough for severe anemia. Your provider may prescribe an erythropoiesis-stimulating agent.6 These medications cause your bone marrow to make more red blood cells.
If you are taking medications that cause fatigue, it may be possible to switch.11
You may find some general recommendations for fatigue helpful.10 Perhaps surprisingly, moderate exercise can be better than rest. An example of moderate exercise is 30 minutes of walking. Doing your best to maintain your relationships with friends and family may help with fatigue. You may find that returning to workparticularly if you can have flexible hourscan be energizing. Of course, if your IBD is very severe, these activities may be difficult or impossible, which can be very frustrating.
Extra hours of sleep may not make you feel more rested. However, improving the quality of sleep you get might. Tips for improving sleep quality include:10,12
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Who Is Most Likely To Get Crohn’s Disease
The disease can occur at any age, but Crohn’s disease is most often diagnosed in adolescents and adults between the ages of 20 and 30. Studies have shown that between 1.5 percent and 28 percent of people with IBD have a first-degree relative, such as a parent, child, or sibling, who also has one of the diseases.
Ibd & Related Conditions
One common reason for fatigue is anemia. People with IBD may be anemic either due to frank blood loss from the intestine , or from an iron deficiency.Malabsorption of vitamins and minerals is common in IBD, and without enough iron, folic acid, and vitamin B12, the body can’t make more red blood cells. Treating the cause of the anemia, be it stopping the bleeding or supplementing with iron or B vitamins, would be the best course of action to treat anemia associated with IBD.
Arthritis is the most common extra-intestinal complication of IBD. Another type of auto-immune disease, arthritis, comes with its own causes of fatigue, such as pain and inflammation. Some forms of arthritis will improve when IBD is under control, and other forms are independent of the status of the IBD. If arthritis is a suspected cause of fatigue, the best course of action would be to treat both the IBD and the arthritis.
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Reasons You May Be Experiencing Crohns
Quality sleep is important for keeping Crohns disease under control. A study published in February 2020 in Scientific Reports found people with active Crohns disease reported getting less sleep than people without the disease or those whose disease was in remission. Another study, published in December 2019 in the journal Inflammatory Bowel Diseases, observed that sleep disturbances can lead to worse outcomes for Crohns patients and that poor sleep quality is associated with disease activity.
You may also have fatigue from a variety of sleep- and non-sleep-related issues, including:
What Is Crohns Disease
Crohns disease is an inflammatory bowel disease featuring chronic inflammation of the inner of the gastrointestinal tract.
Patients experience periods of symptomatic relapse and remission.
The presentation of the disease is variable some stay symptom-free most of their lives, while others may have severe, chronic symptoms that dont resolve.
The first peak age of patients with the disease usually occurs between the ages of 15 and 30 years and the second peak age occurs between the ages of 60 and 70 years. Crohns disease is more common in women.
The disease can cause life-threatening complications but usually does not shorten life expectancy. It is a lifelong, progressive disease with no cure. With appropriate treatment, however, the symptoms and progression can be controlled.
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What Causes Fatigue In Ibd Patients
- Inflammation: The bodys response to inflammation may cause fatigue. Chemical signals produced during inflammation directly act on the brain to cause tiredness and lack of energy.
- Anemia: IBD patients with anemia do not have enough healthy red blood cells to carry adequate oxygen to your body’s tissues which can make you feel tired and weak.
- Nutritional deficiencies: Low iron as well as Vitamin B12 and folate deficiency can also be linked to weakness and fatigue.4 Learn more about Vitamin and Mineral Supplementation.
- Medication side-effects: Fatigue can be a direct medication-related adverse effect . Steroids are also associated with an increase in energy and/or insomnia. Antidepressants and narcotics, commonly prescribed, can be associated with lethargy
- Arthritis: Pain and inflammation of the joints leads to fatigue
- Poor sleep: Sleep may be interrupted by symptoms and anxiety.
- References
-
1. Jelsness-Jorgensen LP, et al. Inflamm Bowel Dis. 2011 17:1564-1572
2. Grimstad T, et al. J Crohns Colitis. 2015 9:725-730
3. Borren NZ, et al. Nat Rev Gastroenterol Hepatol. 2019 16:247-259
4. Gasche C, et al. Gut. 2004 53:1190-1197.
- Pain and Fatigue
How Can You Help Yourself & Your Fatigue
There are a variety of other ways in which people with Crohns or Colitis help themselves manage fatigue, for example:
Frequent breaks and rest Complementary and alternative therapies such as mindfulness, acupuncture, yoga or homoeopathy Physiotherapy and exercise Planning ahead Reducing stress
Two further points to remember are to prioritise the demands on you and to pace yourself.What works for some people may not work for others. Learning more about your body, and what may trigger your fatigue, can be helpful.
There is also a checklist you can use to consider possible causes of your fatigue, in order to make sure nothing is overlooked. You will be able to fill in some items yourself, but for others, you will need a doctor or nurse to give you the information. You can find the checklist at fatigueinIBD.co.uk/checklist.
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How Common Is Fatigue In Inflammatory Bowel Disease
Fatigue affects many people with IBD, and it occurs more frequently among people with Crohn’s disease. Approximately 54% of people with Crohns disease and 33% of those with ulcerative colitis report experiencing fatigue.2 Fatigue also seems to worsen with more aggressive disease, with the people with the most aggressive Crohns disease most likely to report fatigue.9 Up to 86% report feeling fatigue during moderate-to-severely active Crohns disease.3 Even during remission, about 40% to 50% of patients with IBD disease report fatigue.3,9
Crohns Takes An Emotional Toll
If you have Crohns disease, you may experience feelings of guilt and sadness during a flare-up.
Due to the sensitive nature of Crohns symptoms, it can be hard to explain to friends and colleagues why you have to cancel plans or make an abrupt exit. At times, you may also feel like a burden to others, which could intensify feelings of guilt.
Symptoms, like bleeding and cramps, are frightening and may lead to increased levels of stress and anxiety. This, in turn, can contribute to flare-ups.
Other symptoms, like diarrhea and constipation, are often embarrassing to talk about and may make experiencing a flare-up a lonely and isolating experience.
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My Ongoing Struggle With Crohn’s Fatigue
For me, Crohn’s disease fatigue is almost as much of a monster as the actual inflammation, or the GI signs and symptoms often controlling my life. I struggle with fatigue the most, and I often wonder why.
I think there’s a combination of reasons somewhat because fatigue is invisible, even to me, and it can feel extremely subjective to assess and share.
I think the lack of understanding about how Crohn’s disease leads to intense and long-lasting fatigue is not talked about enough, not with doctors or amongst patients and so I think it’s something I try hard to ignore, or work through, or blow past.
In Reality It Sometimes Feels Crippling
It makes me feel desperately alone, too exhausted to try to explain to someone who can’t understand how I feel, and why, and what I need in order to “improve.” Sometimes improvement feels impossible.
The fatigue never really goes away, it just waxes and wanes at times more tolerable and easier to bypass than others. Its always in the back of my mind, and yet, when it becomes overwhelming I always feel caught off guard.
I feel like I let it slip by me, regardless of how hard I’d fought to keep going. Often, fatigue makes me feel like my own worst enemy, and honestly, this feels really hard sometimes.
If you struggle with the emotional and physical effects of Crohn’s disease fatigue, what has helped you cope? I’d love your suggestions. If it feels difficult for you, I wrote this so you know you’re not alone.
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Crohns Can Be Unpredictable
For many people with Crohns disease, the unpredictable nature of flare-ups can also be extremely frustrating. Theres no way to know when one might happen, and the symptoms are often so bad that youre forced to stop whatever youre doing .
Whether youre in the middle of a presentation at work or out celebrating a friends birthday, if you experience a flare-up, it immediately becomes your top priority. Since theres currently no cure for Crohns, you might also feel helpless or hopeless.
Science Behind Ibd And Sleep Disturbance
Sleep and the intricate relationship between sleep and IBD are a keen area of research interest because they are now thought to be an important environmental factor that may contribute to disease flares. There is good evidence about the link between sleep deprivation and the activation of the immune system, and the ability to mount an immune response . In a meta-analysis of experimental sleep deprivation studies, sleep disturbances were associated with increases in CRP and IL-6 . The largest studies that show a relationship between altered sleep patterns and inflammatory disorders are in shift workers. In one study, male electricians and male food and beverage industry workers had a statistically significant increased propensity for developing UC and CD, which was thought to be related to irregular hours and interrupted sleep patterns . Patients with IBD with poor sleep have increased rates of disease relapse, and lower sleep quality scores are predictive of subclinical histological inflammation and disease relapse at 6 months . In another study, patients with CD in remission had a twofold increased risk of disease recurrence at 6 months however, this was not seen in patients with UC . Ananthakrishnan et al. also found a higher incidence of UC in individuals with less than 6 h of sleep or more than 9 h of sleep .
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Theme : Methods Used By Hcps To Deal With Fatigue
5.3.1 Sub-theme 1: negative or fatalistic attitudes: âdon’t ask don’t tellâ approach
Many participants mentioned professionals not asking about and in turn patients not volunteering information about fatigue. âGenerally I think we don’t tend to talk too much about the fatigue, whether that’s right or wrong, but we don’t tend to, unless people bring it up with us, but I wonder whether we ought to reallyâ . Some saw patients as not very interested in fatigue. âIt’s more the acute side of things that patients will wantâ . Most HCPs agreed that fatigue was not part of an initial IBD assessment. Although some routinely refer new patients to the Crohn’s and Colitis UK patient information pack and website, most seemed uncertain if fatigue is covered in this material.
Participants felt they don’t tackle fatigue directly. âI suppose I don’t really mention tiredness as a featureâ . Some expressed guilt at not paying this more attention, âwhy don’t we, because we jolly well ought toâ , while others appeared to avoid the issue of fatigue, and seldom raise it unless asked directly by a patient, and felt that patients seldom raise it. The issue of patients adjusting to and seeing fatigue as normal was mentioned often. âThey have very good coping mechanisms so it becomes part of their norm I think but they don’t realise, or they forget what it feels like to have energy or be well, because they’ve been unwell or fatigued for such a long timeâ .
Talk About Your Crohns Fatigue
If youre feeling fatigued more often than not, talk to your doctor, who may reassess your treatment plan to be sure its still controlling your Crohnsand see if something else might work better to combat your exhaustion. Your doctor can also recommend lifestyle changes and refer you to other health care pros who can helplike a dietitian to make sure your nutrition is in a good place, and a trainer or physical therapist who can teach you energizing exercises that are appropriate for your fitness level.
Bottom line: Crohns is a bit of an energy roller coaster, with periods of feeling great, like youre up for anything, followed by flares when you feel like you cant scrape yourself off the couch. So give yourself some grace. Do your best to keep up with your treatments, prioritize sleep hygiene and healthful eating, and do your best not to skip regular exercise.
And know how there will be times when you cant stick to even your simplest goalsand thats OK. Call in your support system: Lean on a partner to take dinner and clean-up duty while you rest. Talk on the phone with a friend to keep your spirits up. And hit up your doctor for some fresh fatigue guidance. Most important, rest easyyouve got this.
Crohns Disease Treatment: National Institutes of Health . Treatment for Crohns Disease.
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