Fibromyalgia Research UK
Making sure no one has to manage Fibromyalgia alone
INFORMATION
Raising a fibromyalgia child
How can Parents Cope
A lack of information about fibromyalgia particularly in kids, can create a lot of anxiety and self-doubt for parents.
It’s important that you understand fibromyalgia in your child and how to manage.
these tips can help-
Tell friends and family only if and when you're ready. If disclosing too soon causes more stress, it’s not worth it, because stress can lead to flares for your child and that’s not what we’re aiming for.
Build a support network. Family and friends will be your closest support network but there are also other ways to gay support. Find a Facebook group that is good and has a good reputation. Fibromyalgia research uk, has set rules for every member to follow. The group is constantly monitored and considered safe for younger adults. Face book has an age limit and those rules also must be adhered too. Some towns have fibromyalgia meetings, this is a great way for you to bond as a family and learn together how to care for your child. It may also introduce children to other children with the condition or who’s parents have fibro and therefore those children will sympathise.
Have fun as a family. Family outings to the park, beach or zoo are all excellent ways to reinforce family bonds and keeps fibromyalgia from dominating family life.
Work with your child's school. Some parents find communicating with schools can be problematic, but in order to arrange extended time on tests to compensate for fatigue or memory difficulties. Cognitive changes, mobility problems, changes in vision, and heat sensitivity may need extra accommodations in place. Don't be afraid to ask because if you don’t ask you don’t know.
Encourage independence. Parents tend to take over and run the medications etc But this isn’t always best in the long run. Instead, teach your child how to manage Their fibro on her own and encourage making independent choices as much as possible.
Stay positive. It’s hard to watch your child growing up in pain and all you want is to take it away for them. Fibromyalgia will make your child suffer with fatigue and constant pain, but so long as you remain positive and happy so will they.
Don’t let Fibromyalgia define your child.
One of the things that parents worry about most is— will our child have the normal and fantastic life I’ve dreamed they will have?
Yes they will💗
Fibromyalgia and marriage
A marriage isn’t easy whether you have a chronic illness or not, but when you have fibromyalgia certain feelings and physicality’s could mean your on a slippery slope.
I have been married for 12 years and whilst I’m not saying we have a fantastic marriage we certainly do work as a couple, we have ups and downs like everyone but with these tips it has made our lives easier and I hope they do for you too.
Don’t expect mind-reading.
I used to get upset and feel isolated when I was first diagnosed. I was in so much pain, one day I was angry at my husband for not coming in and talking to me about what was upsetting me, BUT I never told him. My husband is not a mind reader. The moment I started speaking, he listened and he’s help me through it together.
Don’t bottle things up, even if you find certain subjects embarrassing.
Don’t isolate yourself.
In the early stages after my diagnosis, I was depressed and taking deluxatine. I would end up in my bedroom watching tv, whilst my husband was downstairs watching tv.
Now if I’m resting I make sure I lay down in the busiest part of the house (our living room) so I’m still with my husband and my children.
When you feel good.
Take advantage of the time you feel good, even if you and your family go for a walk together, walk the dog together, or go for a pub lunch or evening drinks. This is called making memories and they are the times you reflect on when you feeling bad. I do a little bit of house work everyday whether I feel good or bad. I do a room at a time and feel good about myself once I have done them.
Touch each other once a day.
If it is just sitting on a couch and holding hands, cuddling, hugging, touching releases oxytocin, a neuropeptide which promotes feelings of devotion and bonding.
Remember good times.
Reflecting on good days with your husband and families help you feel happier within yourself. Try not to hang on to or dwindle on things that didn’t go your way or an argument.
You never know what life will bring.
Focus on what you can do and not what you can’t.
I used to wish my husband would do certain things, like hold my hand or cuddle me more, or ask me how my day was. And then I realised, I didn’t do those things with him. So I started. Now my husband asks how my day was. He cares. He wanted the same things I did we just hadn’t told or talked about it.
Tell them you LOVE them.
This is one thing that is taken for granted, not telling someone you love them. It’s hard sometimes especially if you are feeling down or if you couldn’t do something, but always try to end the day on a positive note.
Don’t blame yourself.
I can not name one person who asked to have Fibromyalgia, you didn’t do this to yourself and you certainly don’t deserve it, but feeling like your a burden or that your partner is better if without you is Simply not true. This is the hand you have been dealt with but your life isn’t over, it’s just changed. your no longer in the fast lane we have definitely moved into the slow lane, some of us may even be on the hard shoulder. Life has changed for you yes but it’s still a life and you should live it. 💗
Anxiety
If you are suffering with Anxiety you may feel quite isolated, the fear of going outside and placed in certain situations you can not control.
Here are some ways to help your anxiety and panic attacks before they begin-
Stopping Panic: What to Do When You’re Having a Panic Attack
1) Deep breathing: Relaxing your body can help sidestep a panic attack. Practice breathing in through your nose for a count of five, hold it for five and then breathe out through mouth for a count of five. Or take a class in meditation and breathing techniques
2) If you suddenly feel your heart pounding or experience other physical clues that a panic attack is barreling for you, try this distraction. Start counting backward from 100 by 3s. The act of counting at random intervals helps you to focus and override the anxious thoughts that are trying to sneak into your head. Better still keep loose change in your pocket. Add a pound or a penny, then add two pennies and so on. By controlling your thoughts and focusing on something outside yourself you will being to feel calmer.
3) Grounding yourself is another helpful technique. Tune yourself into 4 things around you that you can see, 3 things you can touch, 2 that you smell and 1 you can taste. Again, forcing your mind to consider something outside yourself helps,
Treatments
Panic attacks and panic disorder are treatable once the underlying cause of is identified. “Usually medical conditions and other factors
Here are some options that may be recommended to you :
Cognitive behavioral therapy (CBT), is based on the idea that our thoughts cause our feelings and behaviors, not external things, like people, situations, and events. According to the National Association of Cognitive Behavioral Therapists the benefit of this therapy is that we can change the way we think to feel and act better even if the situation does not change. CBT focuses on determining the thought and behavior patterns responsible for sustaining or causing the panic attacks. CBT is a time-limited process (treatment goals—and the number of sessions expected to achieve them—are established at the start) that employs a variety of cognitive and behavioral techniques to affect change.
Dialectical Behavior Therapy (DBT) is form of Cognitive therapy that emphasizes individual psychotherapy as well as group skills training to help people learns new skills and strategies—including mindfulness and distress tolerance– to manage their anxiety and panic.
Medication can be used to control or lessen symptoms related to panic disorder. It is most effective when combined with other treatments, such as the aforementioned cognitive behavioral therapy and exposure therapy. Medications used to treat panic attacks and panic disorder include antidepressants, though they take several weeks to reach effectiveness. Benzodiazepines such as Ativan and Xanax work quickly. However they are addictive and should only be used for a short time,
Overall, the best treatment involves a combination of therapies along with mindfulness, learning deep breathing techniques, yoga and exercise.
Of course, everyone is different and what works for one person might not work for you. If you experience panic attacks or acute anxiety and if you’ve discovered helpful tips, tricks, and methods that help, please add them
Muscle weakness in Fibromyalgia
Muscle weakness is very common in Fibromyalgia (FM) and can occur in any part of the body. It can be parts that are always tired or become tired easily. You can have a great nights rest and when you awaken, you feel as if you just ran a marathon or stayed up all night and not slept at all.
The end result is that you are "wiped out" and it’s only the start of the day. When you are already tired, it’s difficult to stay active or exercise, but remember you have to work hard and keep going because you either use it or loose it.
Many people report weakness when it is actually fatigue. Common causes of fatigue include Fibromyalgia, severe illness, cancer, a chronic infection (HIV) heart failure, anemia, chronic fatigue syndrome and mood disorders (depression),
Doctors try to determine whether people are weak or simply tired. If people are weak, doctors then determine whether the weakness is severe enough or worsening quickly enough to be life threatening.
people with weakness, the following symptoms are cause for concern:
Weakness that develops over a few days or less
Difficulty breathing
Difficulty raising the head while lying down
Difficulty chewing, talking, or swallowing
Loss of the ability to walk
Doctors test muscle strength by asking the person to push or pull against resistance or to do maneuvers that require strength, such as walking on the heels and tiptoes or rising from a chair.
Bladder and Bowel problems
Bladder dysfunction in FM happens when nerve signals to the bladder and urinary tract.
If bladder dysfunction is left untreated, it can cause permanent damage to the urinary tract. This happens when there's incomplete emptying of the bladder and urine is retained, resulting in both urinary tract infections and formation of stones from minerals which collect. Constantly leaking urine can result in skin breakdown and infection. In addition, bladder dysfunctions often result in people avoiding socializing and restricting their normal daily activities.
Bladder symptoms can appear as:
Hesitancy
There is an urge to urinate, but it takes a long time to begin to urinate or it's difficult to keep the urine flowing. Sometimes, the attempt is even "dry," meaning no urine is released at all.
Urgency
The need to urinate comes on suddenly and strongly and may be accompanied by an uncomfortable "full" feeling in the bladder.
Frequency
There's a need to urinate much more often than usual. This often happens at night, causing sleep disturbances.
Incontinence
This can either feel like a sudden urge to urinate, followed by the flow starting immediately before there's a chance to react, or dribbling or leaking with no warning or sensation.
Bowel symptoms usually manifest as constipation, although diarrhea and incontinence can also occur. Many of these types of symptoms can be managed with medications, combined with modifications in diet, fluid intake and habits.
Battling fatigue through our bellies
Many people with fibromyalgia feel tired, And suffer with fatigue, lack of energy will effect your mood but it will also affect your daily activities.
Here is a list of foods that have been proven to help with us with our energy levels and help us battle fatigue through our bellies.
Bananas
Bananas may be one of the best foods for energy. They are an excellent source of carbohydrates, potassium and vitamin B6, all of which can help boost energy levels in your body
Fatty Fish
Fatty fish like salmon and tuna are good sources of protein, fatty acids and B vitamins, making them great foods to include in your diet.
A serving of salmon or tuna provides you with the recommended daily amount of omega-3 fatty acids and vitamin B12
Omega-3 fatty acids have been shown to reduce inflammation in the body, which is a common cause of fatigue.
Brown Rice
Brown rice is a very nutritious food. Unlike white rice, it is less processed and retains more nutritional value in the form of fiber, vitamins and minerals, it could also help regulate blood sugar levels and help you maintain steady energy levels throughout the day
Sweet Potatoes
Besides being delicious, sweet potatoes are a nutritious source of energy for those looking for an extra boost.
Sweet potatoes are also a great source of manganese, which helps in the breakdown of nutrients to produce energy
Coffee
Coffee might be the first food you’d think to consume when you’re looking for a boost of energy.
It’s rich in caffeine.
Coffee stimulates the body and brain
Even though coffee only provides two calories per cup, its stimulatory effects on the body can make you feel alert and focused
Eggs
Eggs are not only a tremendously satisfying food, but they can also provide energy to fuel your day.
Eggs are packed with protein, which can give you a steady and sustained source of energy because it does not cause spikes in blood sugar and insulin when it is digested
Moreover, eggs are rich in B vitamins. These vitamins help enzymes perform their role in the processes of breaking down food for erred energy levels.
Apples
Apples are one of the most popular fruits in the world, and are a good source of carbs and fiber.
Due to their rich content of natural sugars and fiber, apples can provide a slow and sustained energy release
Water
Water is essential for life. It represents up to 60% of your body weight and is involved in many cellular functions, including energy production
Not drinking enough water may lead to dehydration, which can slow down body functions, leaving you feeling sluggish and tired
Drinking water could give you a boost of energy and help fight off feelings of fatigue
Dark Chocolate
Dark chocolate has a higher cocoa content than regular or milk chocolate.
The antioxidants in cocoa have been shown to have many health benefits, such as increasing blood flow throughout the body
Quinoa
Quinoa is a seed popular for its high protein content.
Additionally, quinoa provides more than 20% of the RDI for manganese, magnesium and folate. All of these nutrients are used by enzymes in the process of producing energy
Oatmeal
Oatmeal is a whole-grain cereal that could provide you with long-lasting energy.
It contains beta-glucan, a soluble fiber that forms a thick gel when combined with water. The presence of this gel in the digestive system delays stomach emptying and the absorption of glucose into the blood
Furthermore, oats are rich in vitamins and minerals that help the energy production process. These include B vitamins, iron and manganese
The combination of all these nutrients makes oatmeal a perfect food for sustained energy release.
Yogurt
Yogurt is an excellent snack to fuel up your day.
yogurt is packed with protein, which helps slow down the digestion of carbohydrates, thereby slowing down the release of sugars into the blood
Hummus
Hummus is made with chickpeas, sesame seed paste, oil and lemon. The combination of these ingredients makes hummus a good source of energy
You can enjoy hummus as a dip for veggies or in combination with other dishes such as sandwiches or salads.
Lentils
Besides being a great and inexpensive source of protein, lentils are a good source of nutrients and help boost energy levels.
Lentils are legumes that are rich in carbs and fiber.
Strawberries
Strawberries are another good energy-boosting fruit.
They can provide you with carbs, fiber and sugars that can enhance energy levels.
You can incorporate strawberries in many recipes, and use them in smoothies, parfaits or salads.
Seeds
Seeds, such as chia seeds, flaxseeds and pumpkin seeds, could also increase your energy levels.
These seeds are generally high in plant-based omega-3 fatty acids.
Beans
Beans are rich in nutrients and a great source of natural energy.
Even though there are hundreds of different types of beans, their nutrient profiles are very similar. They are a rich source of carbohydrates, fiber and protein
Beans are digested slowly, which helps maintain stable blood sugar levels and gives you steady energy. Additionally, beans contain antioxidants that can help fight inflammation and promote energy.
Green Tea
Green tea is famous for its long list of health benefits.
It has a high concentration of powerful antioxidants that can help prevent oxidative stress and inflammation
Similar to coffee, green tea contains caffeine, which can increase energy levels. However, green tea also contains a compound called L-theanine
Nuts
Nuts can be a great snack packed with nutrients to promote energy.
Most nuts like almonds, walnuts and cashews are known for their high calories and abundance of proteins, carbs and healthy fats. These nutrients can provide you with a slow release of energy during the day.
They are also high in omega-3 and omega-6 fatty acids, and antioxidants that can increase energy levels and help with inflammation and antioxidant protection
Popcorn
Popcorn can be an excellent low-calorie, energizing snack.
It’s high in carbs and fiber, which can make it very satisfying and a good option for a snack.
Leafy Green Vegetables
Leafy green vegetables, such as spinach and kale, are excellent sources of nutrients that promote energy.
They are high in iron, calcium, magnesium, potassium and vitamins A, C, E and K. Additionally, they are packed with folic acid, fiber and antioxidants that provide health benefits
Fatigue is one of the most common symptoms of iron deficiency
Leafy green vegetables like spinach and kale are excellent sources of iron to replenish your body's stores, and of vitamin C to enhance the absorption of iron in the body
Iron enhances the production of red blood cells for the efficient delivery of oxygen to your cells, which is known to fight fatigue
These are all great suggestions to help us battle our fatigue through our bellies, food gives us energy and powers our brains, fatigue is a fibro gift I personally struggle with and find since eating some of the above my energy levels have increased,
I hope the same will happen for you.
Let talk about PAIN
WHAT types of pain is there?
Pain is a physical sensation, ranging from uncomfortable through to excruciating.
musculoskeletal pain is caused by damage to muscles, tendons, ligaments and soft tissue, for example neck or back pain.
People with fibromyalgia may experience pain for other reasons including:
as a side effect of medication eg headaches
from an accident
It is common to experience more than one type of pain.
Treating pain may include medication or things such as physiotherapy. You can also make changes to your everyday life so that pain has less of an impact.
What is pain?
No two people experience Fibro pain in the same way. Pain can be annoying, uncomfortable or excruciating. It can have a big impact on the person and it yet seem completely invisible to those around them.
Acute pain begins suddenly and then improves or disappears. It is usually an intense, sharp, burning or shooting feeling.
Chronic pain is longer lasting pain. It may feel better sometimes than others but never goes away.
Paroxysmal symptoms begin suddenly and only last for a few seconds.
Making a Pain diary
You can help your GP by writing down what you are experiencing as accurately as possible. Then they can understand what it feels like for you and the effect it is having on your everyday life.
Can you say this like-
where you feel the pain?
when you feel the pain?
whether some things make it worse?
whether it feels sharp, dull, aching, burning, crawling, tight or like a pressure?
You might like to think about whether the feeling:
comes in short or long lasting bursts or is there all the time
started suddenly or increased bit by bit
started at the same time as other new symptoms or when previous symptoms came back quite suddenly. This may suggest that your pain is part of a relapse.
improves with pain killers?
is stopping you doing what you’d like to do.
What causes pain?
Different types of pain have different causes.
Nerve pain is a result of damage caused the the nerves.
Although the pain feels like it is in a particular part of your body, such as your fingertips, there is no damage to the tissues in your hand. The only damage is in the nerves which report to your brain about your hand and this is what makes it seem like there is something wrong with your fingertips.
Examples of nerve pain-
trigeminal neuralgia, an intense painful sensation in the side of the face
Lhermitte's sign, electric shock feelings in the neck and spine which are sometimes painful
optic neuritis which can give a sharp, knife like pain behind the eyes and sometimes also causes difficulties with vision
painful altered sensation, i.e pins and needles, burning, numbness, prickling, itching and crawling
musculoskeletal pain
Hip and back pain caused by alterations in how you walk due to fibro possibly because of muscle stiffness, weakness or problems with balance.
Back pain due to sitting for long periods because of fatigue, walking difficulties or inability to stand for long.
Muscle or joint pain due to changes in posture, spasms or muscle stiffness
What can I do if Im getting pain?
Some people opt for medications but you can also have natural therapies such as physiotherapy. Sometimes a combination of both works best.
What can I do to help myself?
Exercise, due to pain or other symptoms, can cause a gradual loss of strength and fitness. This is called deconditioning and can make your pain worse. Although it may not sound appealing, regular exercise and small bursts of exercise can help strengthen your muscles.
Movement. It can be tempting to lie down or sit still for long periods if your pain is troubling you but it is better to move around regularly if you can. You could try small regular changes of position will also help prevent pressure sores
Pacing This involves breaking large tasks into smaller ones and taking regular, short breaks so you overdo it.
Change your habits. It can be helpful to change the way you usually do something. You might buy a more supportive mattress, do the ironing while sitting on a stool or order your shopping online so you don’t have to carry it.
heat applied to the affected area can be helpful. You could try using a hot water bottle or heat pad. A hot bath can be good for pain as well.
Cold. Some people find that applying ice or a cold pack helps. Ice should be wrapped in a tea towel not applied straight to the skin or you could try a pack of frozen peas.
Complementary and alternative medicines (CAMs). There is some evidence that acupuncture can help fibro pain. Aromatherapy can reduce muscle stiffness and promote relaxation and wellbeing.
Distraction. It can be difficult to ignore painful or painful symptoms and they can become the focus of your thoughts. Try to distract yourself by doing something else like colouring or photography.
Relaxation. You may become tense if pain is having an impact on how you feel and how much you can do. This tension may increase your pain and may also create other aches and pains which add to your discomfort. There are many relaxation techniques which can help you so it can be worth trying a range to see what suits you best. You could try breathing exercises, massage, mindfulness, meditation, hypnotherapy or gentle yoga stretching exercises. You might also like to try restful things that you enjoy like listening to music, meeting up for a coffee, gentle walking or sitting outdoors.
Stay positive. pain can be very upsetting so it is vital to stay as positive as possible. cognitive behavioural therapy (CBT) encourages new ways of thinking and changes in behaviour.
Share your thoughts. Pain is an invisible symptoms of Fibro, Even people close to you may not notice that you are in pain. It can be good to share how you are feeling and to ask for help when you need it.
Fibromyalgia and Depression
What is depression?
Depression can be a feeling of sadness or low mood. Everyone feels sad or down at times but clinical depression is different. It is constantly present and interferes with your everyday life. Depression is mild, moderate or severe,
If you are depressed you can lose pleasure in things like hobbies, you may not want to see friends and family. Some people even become suicidal.
What causes Depression
You might be more at risk if:
* you have experienced a stressful relationship break-down or a bereavement
* you have a family history of depression
* you are a woman who has recently given birth
* you are socially isolated
* you have drug or alcohol problems
Living with Fibromyalgia
The challenges of living with fibromyalgia can also lead depression, isolation, not being able to work, the life you once had. Increased levels of stress and experiencing symptoms such as poor sleep, chronic pain and overwhelming fatigue can also be contributing factors.
What can I do if I think I'm depressed?
If you or your family believe you are suffering from depression your GP can help you, they rely on descriptions of the symptoms you are experiencing and the effect it is having on your life.
Recognising depression when you have Fibro can be difficult as you may already have some of the symptoms usually associated with depression such as fatigue, poor concentration and sleep problems.
Signs of depression include:
* low mood all the time for at least two weeks
* negative thoughts about yourself and the future
* not being able to enjoy routine things such as eating, watching TV or talking to friends
* thoughts of suicide
It has also been suggested that with Fibro depression causes increased problems with thinking, feeling irritable, frustrated and discouraged.
Chat it out
It is important to let people around you know how you feel. It can be hard to talk about how you are feeling but you shouldn’t keep things bottled up.
Depression can interfere with your ability to concentrate.
Without the right help depression can spiral out of control, so it is important to speak to a GP or another person you trust as early as possible.
If ur thinking awful thoughts
Research has found that over a quarter of people with fibromyalgia think about suicide. you may think friends and family would be better off if you weren’t around. If you are having thoughts of suicide or you find yourself severely down,
the Samaritans
provide a free 24 hour telephone line in the UK and Republic of Ireland on 116 123 and can help you. Friends and family can also help - the important thing is to involve other people even though this may not be easy.
How is depression treated?
There are a number of approaches to treating depression. The best solution for you will depend on the severity of your depression,
Medication is one way and if you are severely depressed then your GP will look to put you on medication to help you.
Counselling is another option that many people find very helpful and there are many different types of counselling, Bereavement, PTSD, Couples etc.
Medication and many more.
The main thing is to know you are not alone and there are many people that know how you feel and can help you, the world would would not be a better place without you it’s a better place with you.
Lifestyle Changes You Can Make to help fibromyalgia
Medications aren’t the only answer. Taking good care of yourself will help you live better with Fibromyalgia Every day, make sure you:
Get plenty of rest: Keep a regular sleep schedule and make sure your bedroom is cool, dark.
Eat healthy food: Choose foods low in saturated fats and high in fiber.
Get some exercise: Even a walk around the road can help. Exercise builds bones and strengthens muscles. It keeps depression at bay and helps you sleep better.
Manage your stress: Stress will make your symptoms worse. Whether you meditate, read, do a pain diary, or chat with friends, find something that helps you control the ups and downs.
Stay cool: A rise in body temperature can make your symptoms worse. Stay in a cool area if you can. Wear loose, breathable clothes outside.
Are There Alternative Treatments?
Current research suggests these treatments are worth a try:
Vitamin D: Low levels of vitamin D in your blood can boost your chances of having Fibromyalgia. Studies are under way to see if vitamin D supplements can help. You should get your doctor to check your levels and discuss if you need to take a supplement.
Acupuncture: This traditional Chinese treatment holds that energy called chi flows along your body in lines called meridians. When your chi is out of whack, illness or pain results. An acupuncturist slides thin needles into points along the meridians to change your energy flow. Studies show it can help Fibromyalgia symptoms like fatigue, pain, mood, spasticity, numbness, tingling, and bladder problems.
Flares
If you’re taking medication, flares will eventually go away on their own, although it may seem your life is one big flare, it is not and you do still have good and bad days.
Symptom Control
Your doctor may recommend treatments for:
Muscle stiffness and spasms: Muscle relaxants like baclofen and tizanidine (Zanaflex), or sedatives like clonazepam (Klonopin) and diazepam.
Fatigue: Amantadine (Symmetrel), armodafinil (Nuvigil), modafinil (Provigil)
Depression: Antidepressants, such as bupropion (Wellbutrin), fluoxetine (Prozac), sertraline and Deluxatine.
Bladder problems: Oxybutynin (Ditropan) or tolterodine (Detrol)
She may also suggest:
Physical therapy: A trained health care professional can teach you exercises that help you stay active. You might also learn how to use a cane, walker, or other assistive device to get around more easily.
My DOCTOR won’t listen to me and I’m in PAIN
Getting Help for your Pain
how do you get your doctor to take your symptoms seriously and help you find the right pain treatment?
Try following these steps:
Keep a pain diary-
During your day or at least several times a week, write down every time you had pain, it might seem like it’s going to be pointless as your in pain a lot but the Doctor needs to see just how much you are in pain, especially the times when it was particularly bad, and make a note of what you were doing when you had the pain.
Keeping a diary has two benefits. First, you may be able to learn what triggers your pain, and, second, you can show your doctor and it will help you to describe your pain. How it makes you feel, if you went to bed, sat on your own or cried etc. Once you and your doctor know what your triggers are and when your pain is worse, you may be able to deal with it more effectively.
Bring support.
When you go to see your Doctor about your pain, bring a friend or family member with you. The doctor may take it more seriously if you take someone with you to back up how much pain you are in, and how much it is effecting your daily life. The Doctor may also give you some information and you can listen together to what the doctor says.
Write down your questions.
If you go to the appointment with a list of questions already prepared, you won’t forget to ask. You only have a short time you have with the doctor, and it is important to get everything you want to say and ask out, it’s important you get answers aswell as your questions so although I’m sure you will have a lot of questions it’s best to keep your questions short.
If your Doctor still doesn’t listen to you it maybe necessary to find another doctor. If your doctor isn’t listening to you he isn’t helping you with your pain, look for another doctor who will.
When you’re in chronic pain, you want your doctors to listen to you so that you can find relief. Be assertive and take charge, and together you will find ways to manage your pain.
Let’s talk about people not seeing Fibromyalgia!
You might be clinging onto your shopping trolley for support one minute, experiencing dizziness and fatigue and no one will notice. Another time, your expression is grim and your in pain, but do they ask how you are today?
Many Fibromyalgia symptoms seem invisible to other people. They may affect you greatly but pass by everyone else. This can be very frustrating and upsetting.
So, why don’t people see some of the more visible signs of so-called invisible symptoms?
Which Fibromyalgia symptoms?
Which Fibro symptoms can seem invisible? Probably, some symptoms are more invisible than others but invisible symptoms could include:
anxiety
bladder symptoms
bowel difficulties
cognitive symptoms
depression
dizziness
fatigue
pain
sexual issues for men and women
sight problems
People aren’t mind readers so perhaps we expect too much from them in figuring out what’s going on.
They don’t remember?
Maybe you have already explained your symptoms but someone doesn’t ask you about them or remember that you can’t walk for very long, for example, when they are organising an outing. Why is this?
Many people are very wrapped up in their own lives and their own worries and don’t have head space for remembering anything more. It’s not that people don’t care, they just don’t get around to thinking about it.
They don’t notice
You may feel that your symptoms are really obvious, invisible symptoms can be so bad that they show on your face, especially if you are in pain. Surely if you are holding onto something for support it must be a dizzy day or a fatigue day or both.
It can be puzzling that others don’t notice something is wrong, even if they can’t realise the full extent of your difficulties. it may be because people are in their own world and not looking outward enough to see what’s happening to you, but it doesn’t mean they don’t care.
People don’t understand
Maybe you’ve told them about your symptoms and they’ve remembered what you said. However, they don’t really understand how these symptoms affect you in everyday life.
It may be worth thinking back to when you were first learning about Fibromyalgia, Could you explain the nerve pain? These are quite difficult concepts to get to grips with.
For most people, these things will be outside their personal experience and general knowledge so it will be a learning curve for them to understand what you are going through. You might need to explain several times or in different ways so that they appreciate your difficulties.
They put two and two together and get five!
People can be very quick to jump to conclusions.
Many people with Fibro prefer to cover up how much symptoms are affecting them. Some worry that they shouldn’t make a fuss. Others find that invisible symptoms are easier to hide and this can be helpful if they don't want to disclose thier diagnosis to everyone. you could be doing a better job of hiding your symptoms than you realised?
What could you do?
You just simply explain agin that your unable to walk very far or unable to do all the events they have planned but they can do them and you will watch or go back etc.
How can others help?
If you are the friend, family or colleague of someone with fibro you could make a difference by:
Being supportive. Fibro is a very complex condition where different people experience different symptoms some of which may not be obvious to you.
Trying to learn about invisible symptoms so that you understand better.
Listening!
Accepting that invisible symptoms are very real to the person who is experiencing them.
Accept that things may not always be possible to do all the time.
Your loved one is poorly and may not be the same person they once was, they are trying to deal with that and your support to help them adjust.
Don’t punish someone for being ill.
They have been diagnosed with an illness their life isn’t over.
Encourage them to do things but don’t pressure
Tell them you love them
