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Published on Thursday, 13 August 2020 14:09

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This is part of our larger Young People and Fibromyalgia booklet. This section is aimed at young people and understanding fibromyalgia. All our publications can be found here.

 

What is fibromyalgia?

Fibromyalgia is a chronic pain condition characterised by widespread muscle pain, profound fatigue and non-refreshing sleep. The pain is often described as aching or burning, just like you feel when you have the flu or have run a marathon the day before. Sleep is commonly disturbed with frequent night-time awakenings and often a person will awake feeling as tired and sore as when they went to bed the night before. The fatigue can vary from simply feeling tired to overwhelming exhaustion, which can come on suddenly as though someone has ‘pulled the plug’. These main symptoms can be only the tip of the iceberg however, as there are also a range of other commonly associated symptoms including irritable bowel syndrome, cognitive difficulties and multiple sensitivities. The symptoms of fibromyalgia can vary in intensity from day to day and undulate over time. It can seem as though the pain is moving around the body and as soon as one pain disappears another one arises.

Main symptoms:

• widespread pain throughout the body
• disturbed sleep
• always feeling tired 

Other common symptoms:

• morning stiffness
• pain when you exert yourself
• headaches
• difficulty concentrating (fibrofog)
• light-headedness
• feeling worried
• being bothered by chemicals, light, sound, smells, noise
• numbness and tingling
• irritable bowel syndrome (IBS)
• irritable bladder
• cold sensitivity
• restless legs
  

Possible solutions for coping at school or college

School/college can present all sorts of problems. Pupils may get stiff and sore sitting in class, find it difficult to concentrate, struggle to carry books from class to class or simply find the whole day too exhausting.

You will need to look at some practical solutions to make the school day easier for them. The first step is for you to discuss the problems they are facing with them and their parents as everyone with fibromyalgia does not have the same symtoms. It may be useful to research some information on fibromyalgia at our website at www. fmauk.org.

Encourage the pupil to come up with their own ideas and solutions, by going through the school day and identifying which activities cause more pain, what things make them anxious and what time of the day the fatigue gets too much.

Here are some ideas and solutions other young people have found useful:

• Permission to leave the classroom whenever needed.
• Permission to use the school/college or staff elevator if one is available.
• Rearrangement of classes to avoid having to constantly change classrooms.
• Using a luggage cart to carry books.
• Having a locker on both floors to avoid carrying so many books.
• Asking for an extra set of books so they have a set to keep at home.
• A support cushion to help them sit more comfortably.
• Using PE lessons to do their own individualised exercise programme. •
• Being provided with a quiet place to rest during lunch break or free periods.
• Having a laptop to take notes if they struggle to write.
• Provide printed notes or handouts.
• Arrangements to dictate or type examinations.
• Time extensions for homework and coursework.
• Provide work that can be done at home if unable to attend for several days.
• A part-time timetable with a reduction in the number of subjects taken.

In extreme cases home tuition may need to be considered.

It may be up to you to come up with ideas and solutions, so go through your school day and think about which activities cause you more pain, what things make you anxious and what time of the day the fatigue gets too much. Then, start problemsolving and thinking creatively to come up with solutions. Here are some ideas and solutions other young people have found useful:

• Permission to use the school or staff elevator if one is available.
• Rearrangement of classes to avoid having to constantly change classrooms. Using a luggage cart to carry your books.
• Having a school locker on both fl oors to avoid carrying so man books.
• Asking for an extra set of books so you have a set to keep at home.
• A support cushion to help you sit more comfortably.
• Using PE lessons to do your own individualised exercise programme.
• Being provided with a quiet place to rest during lunch break or free periods.
• Having a laptop to take notes if you struggle to write.
• Asking the teacher to provide you with their printed notes or handouts.
• Arrangements to dictate or type examinations.
• Time extensions for home work and coursework.
• Teachers to provide work you can do at home if you are unable to attend for several days.
• A part-time timetable with a reduction in the number of subjects you are taking.

Stephanie: “Fibromyalgia can make school very difficult. Fibromyalgia affects my hands so I cannot grip a pencil which means I have to have a computer to type up my notes. I dictated my exams, but it made me feel uncomfortable as I was dictating to a teacher. My teachers are very understanding. They have moved their classes around to accommodate me as I cannot manage the stairs or walk for a long time. There is a department at college called ‘learning support’ who help me a lot. They send me work home if I am too ill to come into school.”

Holly: “I asked for an extra set of books so I could have copies of my text books at home and did not need to carry books all the time. I find it difficult to concentrate and remember what I learnt in class. When I come to revise it is like learning the information for the first time. I also struggle with classrooms that have air conditioning as my muscles seize up and the pain is always more severe during these lessons. Most of my teachers are very understanding and will give me extra time to do my work.”

Carla: “I use a laptop because I cannot write but I can’t carry it so people have to do that for me. Music is difficult though because I cannot do everything on my laptop. My teachers are very supportive. I am allowed an extension if I need it and the teachers try to help as best they can. They even allowed me to hold a coffee morning for Fibromyalgia Awareness Day.” 

Katie: “I missed quite a bit of school as I was in so much pain but was able to do my work at home so don’t feel I missed out. I found it was difficult concentrating for a period of time and sitting in the uncomfortable chairs at a table for so long really made my back sore. My tutors were very supportive but I never asked for extra time as I didn’t want to be treated differently.” 

Keeping your hobbies and social life alive

Getting out and socialising can be a bit of an effort when you are tired and in pain, but if you pace yourself and manage your time well you can still enjoy plenty of good times with your friends. Days out or big social events can aggravate your symptoms but if you have a good time then more often than not it is well worth it. Planning ahead is the key. Here are some ideas and solutions other young people have found useful:

• If you find it difficult to go out in the evening why not invite friends round to your place to watch a DVD and catch up on the latest gossip.
• Organise a night out yourself so you can choose a time that suits you, a place where you feel comfortable and an activity that you enjoy.
• At the cinema sit at the end of a row so you can get up and stretch if you need to.
• Timetable in some rest time in the afternoon so you have the energy to enjoy yourself in the evening.
• You may need to cancel arrangements at the last minute, so explain to your friends that this may happen so they are prepared and don’t take it personally.
• For a big event, plan ahead. Take it easy the day before and try to keep the following day free so you can rest if you need to.
• Plan an escape route for on the day in case you want to leave early.

Carla: “My friends are really understanding about how my FM can change, but I find it difficult to eat out at most restaurants because of my IBS. It is better if I organise the night out myself, so I can choose a restaurant that does food I can eat. I also love music. Playing the flute and guitar now causes me increased pain so I’ve decided to concentrate on my singing.”

Katie: “I have learned who my real friends are. I have some brilliant friends who are really good with my condition, I am very lucky. I work very hard at seeing my friends although I don’t think I am always much company.”

Jenny: “I used to be really anxious about going out with friends in the evening in case I suddenly felt too tired or in too much pain. Now, I ask my parents to come and collect me if I want to go home early. This makes me feel more relaxed and able to enjoy myself.” If you are a sporty person you may be finding some of your hobbies are aggravating your symptoms. There may be ways round this, like reducing the amount of time you spend doing the activity in one session, before building up slowly at your own pace or adapting the activity to suit you better. If you find that some activities simply aren’t worth the extra pain, then have a look round for alternative interesting hobbies. There is a huge selection to choose from.”

Stephanie: “I now find tap dancing and ice skating too physical, so I’ve taken up some new hobbies including jewellery making. I still enjoy listening to my music too.”

Megan: "I go to Guides, play on a trampoline, do drama, play netball and chat to friends online."

Holly: "I don’t have a lot of energy for hobbies, but am enjoying learning another language. I also like to go to the zoo on sunny days and sometimes to the circus because those two things don’t make my symptoms worse. I find going bowling too painful on my hands and cinemas are often too draughty.”

Summary 

• Young people with fibromyalgia can get better over time.
• Exercise is important to stop the muscles becoming stiff, weak and tight.
• Learn to pace your activity throughout the day.
• Don’t be afraid to try new activities.
• Be creative and learn to problem solve.
• Talk to friends and family about how you feel.
• Don’t be afraid to ask for help. 

Click here for information for parents of those with fibromyalgia. This is the 3rd and final section of our Young People & Fibromyalgia booklet.