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Pain

 

Lucy explains pain.

Pain is a process which is controlled by the nervous system. It is there to protect us from danger and/or injury. Sometimes in cases such as CRPS and Fibromyalgia this pattern can get confused.

Pain is there to communicate there is something wrong. The pain receptors are all over our body in our nerves and when we feel pain it sends a signal up to the brain so the brain can try to help us out for example, swelling. Our joints can swell to create a protective cushion to try to prevent further damage to the affected area to allow it to heal efficiently.

The nervous system is made up of the brain, the spinal cord and nerves. These parts all communicate with each other by sending messages these ‘messengers’ are called neurotransmitters. Neurotransmitters communicate lots of different messages but in the case of acute pain when we touch a hot surface the nerve cells (also known as a neuron) pick up there is an abnormality. This process correlates well with acute pain. Acute pain settles when the injury has healed, however chronic pain persists.

The neurotransmitter, known as the pain receptors in the case of pain, sends a signal to the brain through the nerves up in the spinal cord to the part of the brain which deals with pain. The brain can also send endorphins which are natural pain relievers. The brain then sends down a response to the affected area creating pain to make us aware there is something happening and gives us a response in order to prevent damage/injury/relief the pain, in acute pain, with the example of burning your hand on a hob, removing your hand from the hot surface would be the first line of resolution your brain would tell your body to do.

 

 

Acute pain usually occurs through an injury or an accident and has an obvious cause, however, chronic pain is much more complex and usually requires a multidisciplinary approach. In acute pain the focus is usually on the underlying cause eg. a broken bone, whereas chronic pain often requires management skills and is longer term.

The term chronic pain comes about when pain is still felt for 3-6 months and/or longer. Pain which has taken more than the expected healing time for an injury can also be labelled as chronic pain. Chronic pain can be constant, or it can come and go.

There are pain management clinics/programs run in the UK via the NHS. These aim to help you manage and understand your pain and live your life alongside it. They aim to give you a wealth of skills and knowledge to help navigate life with chronic pain

Somatic pain: is associated with the tissue found within the skin and musculoskeletal systems. Terms commonly associated with this type of pain are (but not limited to): sharp, aching, throbbing.

Visceral pain: this is often described as a deep ache that comes from the internal organs within the body.

Neuropathic pain: this pain occurs when there is damage to any part of the nervous system (nerves, spinal cord and/or brain). One example of a term that can be used to describe this pain is burning.

Key Points:

  • A pain threshold is built as we experience pain.
  • Pain tolerance is how much pain a person can handle without interventions.

A pain threshold helps to determine the amount/severity of pain a person is experiencing and allows us to recognise if the pain is changing. It is something which is built up over time through experience. An individual’s threshold can change throughout their life.

Pain tolerance refers to the amount of pain a person can handle. The individual will still be able to recognise that something is painful, however, they may not feel the need to intervene with medications and/or other remedies as they feel able to bare this level of pain on their own with their natural responses to pain sent via the pain receptors. It is believed by most pain researchers that the more an individual experiences pain the greater their pain threshold becomes.

The brain when it feels pain will also release endorphins which act as natural pain killers, these endorphins can help in all cases of pain but can aid tolerance.

When attending a medical appointment, you may often hear health care professionals/allied workers asking you to rate your pain on a scale of 1-10. This gives them an idea of the intensity of pain you are feeling. As someone with EDS/HSD you may rate pain to be a lower number than the average person for the same injury for example a dislocation. During an examination you may not flinch even if you feel pain. This is due to your pain tolerance and pain threshold.

We all perceive pain differently. We all have something a called a pain threshold which differs from person to person, even within the EDS/HSD community. A person’s experiences of pain are valid no matter how it may seem in ‘comparison’ to your own or someone else’s. A struggle is a struggle no matter how it looks. Pain is incomparable as we all experience and feel it differently.

Key points:

  • Things that can affect pain include but are not limited to: stress and mental health, common illness and a decrease/increase in activity levels which sits above/below your normal/bodies comfortability.
  • More details of this can be found under the self-management tab of the website. There will be a direct link at the bottom of the page.

Pain is incredibly individual, and it can take time to learn your pain and watching out for what can lead to flare ups for you personally. A flare up is an increase in pain/symptoms which exceeds your normal levels of pain.

Here are some examples of things which may affect pain levels.

Stress and mental health

A person with EDS/HSD pain is very real and is not a direct consequence of mental health/stress, however, these things are known to worsen pain in some.

Chronic pain is complex and often requires a multidisclinary approach, sometimes including psychologists. This can help you adjust to life with a chronic illness and accept your diagnosis. Anxiety is common among the EDS/HSD community and these services can help you to manage anxiety if you fall into this category.

Increase or decrease in activity

These two things can often be associated with the terms boom and bust, which would go hand in hand with overactivity. Boom and bust is where you feel good so you push yourself to do more than your body can handle which leads to a ‘crash’. A crash is a significant increase in symptoms. People can often fall into this a lot especially when they are undiagnosed or starting to learn their bodies needs and how to manage their condition. A decrease in activity can lead to something called deconditioning. This is where your body pain increases as you decrease your activity or partake less in the things you know help for example physio exercises. In these moments it is important to be compassionate and understanding towards yourself and your body.

Common illnesses eg. Flu, cold, a virus etc.

When your body is dealing with something new or a virus it is bound to knock into your other symptoms you tend to deal with as a part of your EDS/HSD, which can cause a flare up. But it’s important to remember that this flare up shall pass. It is good to have strategies in place to manage your pain on good days and during flares. These things you will learn as time passes, if you have just been diagnosed you may have found things along the way e.g. Heat, without realising.

If you look on the self-management section, there will be some more details regarding this and if you want pain self management tips specifically then there is a page dedicated to this.

https://www.nhsinform.scot/illnesses-and-conditions/brain-nervs-and-spinal-cord/chronic-pain/coping-with-a-flare-up-of-chronic-pain/

There are NHS funded pain management programs/clinics. They are there to help people with chronic pain, including but not limited to those living with EDS/HSD.

They aren’t there to get rid of your pain but instead teach you and help you discover ways you can manage and live with your pain. They are there to improve your quality of life.

Some of the programs/clinics give you the opportunity to meet others who are in a similar situation to you, it can be a great chance to make friends and build a support system for when you leave.

Heat/warm therapy helps with blood flow to the area it is applied to; this can help muscles to relax. If the pain you are feeling is deep and muscular or a long term painful/stiff joint heat may be an effective option.

 

Ice/cool therapy reduces the blood flood in the place it is put on. This slows down the speed/amount of inflammation.

It can also act as a numbing sensation which slows down the pain signals. This can help with pain and is particularly good for an injury. Especially using the RICE method.

 

Safety Tips for heat therapy:

  • Don’t use heat if skin is red or hot
  • Don’t use heat if there is an open wound
  • Don’t use heat if the area is numb
  • If you have a conditions e.g. peripheral neuropathy and similar conditions. Only use if safe to do so. Please ask for medical advice regarding this.
  • Check the temperature or get a trusted adult to check the temperature before using any heat related products. Make sure it doesn’t burn you and is warm rather than boiling hot. For example, if using a bath it should be a comfortable warm temperature. When it comes to applying heat to the skin e.g. with hot water bottles, please make sure these are not directly placed on the skin and are covered with a towel/blanket.

 

Types of heat therapy may include:

  • Paraffin wax and machine, this is particularly good for those who suffer with pain and/or stiffness in their fingers, wrists and/or hands. Please speak to an occupational therapist if carried out with one regarding the temperature safety or read any instructions with a trusted adult if you buy one to make sure it is of a safe temperature.
  • Hot water bottle
  • A warm bath
  • A warm compress
  • A warm bath
  • Placing painful area into a warm bowl of water and moving it around
  • Heat patches/gels e.g. deep heat

 

Types of ice/cold therapy

  • Placing the affected area in cold (not freezing) water.
  • Placing a flannel fill with cold water on the area
  • Placing an ice pack on the affected area, it can be helpful to move this around while it is on there. Make sure you cover the ice pack with a towel. Do not place the ice pack directly to the skin.
  • Using items such as deep freeze gels/patches. Please read the safety instructions before using.

Some people find that when they are in lots of pain or are expecting pain to come on/worsen they may hold their breath or not breathe so deeply. This can often unintentionally cause pain to get worse. This is a natural response to pain for many, but becoming aware of when you are doing it and implementing some breathing techniques can help.

Breathing exercises have many benefits but can take time and practice to get good and feel real benefit so don’t keep trying.

Breathing exercises

Box breathing: this is where take a big breath in through your nose for 4 seconds, hold your breath for 4 seconds then breathe out slowly through your mouth for 4 seconds.

Diaphragmatic breathing [3]: this practice is best done laying down or sitting down. If able, place one hand on your chest and the other just below your rib cage. Breathe in slowly through your nose allowing the breath to fill your lungs. You should feel your chest and stomach rise, your stomach is likely to be felt touching your lower hand. Tighten the stomach muscles as you breathe in and then breathe out slowly through your mouth allowing the stomach muscles to fall and relax as you exhale. The focus for the breath in this type of breathing should be the stomach rather than the chest.

Benefits of breathing exercises/deep breathing for those with chronic pain

When the pain is there, and you notice this or notice an effect on your breathing try to breathe through the pain rather than the natural response of holding the breath to get through the pain.

Deep breathing/breathing exercises can help your muscles to relax and this can also relief some pain or help someone to move on to what’s next. Sometimes we can tense up when in pain which can sometimes make things worse.

It often is found to help relax the body and mind. This can be really helpful to many. This can often help to bring the body and mind to a slightly calmer place for some it may help as it isn’t uncommon to become anxious or worry about things such as what’s happening or what might happen when experiencing lots of pain. If these worries/anxieties are consuming, new or feel hard to control/happen a lot please do speak to a trusted adult and a health care professional. Please do seek support, you deserve it.

It is all about finding and learning your own body and pain and having a ‘toolkit’ to take with you through life.

Lucy

 

Pain management can sometimes feel like a juggling act. Trying to balance everything to the right level it can seem overwhelming but try to break it down to each aspect and each moment at a time and try to be kind and understanding to yourself and your body, you will navigate and find a way to sail through.

Unfortunately, people experiencing pain with EDS/HSD often are going to have pain forever, the level of pain may fluctuate over time, so it is about learning your own triggers, thinking of adaptions you can make whether this is with aids, medication, changing the way you do an activity or all of these and more.

It is all about finding and learning your own body and pain and having a ‘toolkit’ to take with you through life.

People may find that pain effects different aspects of their life and parts of their life are more affected than others or it can swap and change throughout their lives. Often once you have learnt the skills you can often apply these to other things that may be affected in the future. This is something I have found for my personal case. It takes time and patience to learn but it is possible.

  1. 1. Reflection and noticing patterns can be key when it comes to managing chronic pain.
  2. 2. Taking regular breaks.
  3. 3. Make detailed notes of physiotherapy given to you so you always remember the exercises given, or film a video of yourself doing the physio so you can remember how it looks.
  4. 4. Finding a balance between rest and movement.
  5. 5. If you were to feel you reached a point where keeping up with all of your exercises was difficult then pick the ones you get the most benefit from. With the hope to build more back in as able.
  6. 6. Asking yourself these types of questions can help with pacing and understanding your bodies needs and I have found help me listen my body: What does my body need right now? I’m going to check in with my body now, what is it asking me for? Am I ok to continue? Do I need to adapt what I’m doing to be able to continue or should I stop this activity and return later or stop it completely for today?
  7. 7. Make yourself a flare up plan.
  8. 8. Listen to your body.
  9. 9. Pain management programs/clinics aren’t there to get rid of your pain but instead teach you and help you discover ways you can manage and live with your pain. They are there to improve your quality of life.

 

Managing pain: Medication and non-medical pain relief

Pain Medication

Some people may find that pain medication is helpful at times. Some may be on it regularly, others may use it if/when it is required, some may use it to help manage flares and some may use it very minimally. Some people may pick and choose when they use it depending on the activities they’re doing and how they are feeling. This is a personal choice.

There are many different types of pain medication, some of which can be brought over the counter and others can be collected from a pharmacy via a prescription. Sometimes if side effects are particularly bad or you feel you are taking lots of medication some people may find it useful to look at alternative ways to manage the pain, some of which will be detailed in the ‘non-medical pain relief’ section below. Others may try these things first before taking the medication. Again, this is a personal choice.

Some people may find that they struggle to find any relief from pain medication and the strength keeps going up to the point they do not feel like themselves at all and/or are still in lots of pain, many people with EDS/HSD often require other management skills alongside the medication. Some of which are detailed in this page and the self-management page of the website. Pain clinics/management programmes may be helpful. Having a greater understanding of pain may also be helpful which can be found under the ‘what is EDS/HSD’ ‘pain’ section of this website.

Top tips

  • It is best to seek advice from a Health Care professional/Doctor and/or your pharmacist before taking any medication and if experiencing side effects.
  • It can be helpful for some to start with a small dose.
  • It can be helpful to notice whether the pain reduction while taking the medication outweighs any side effects you/your young person may be experiencing.
  • Some feel that medication coupled with other skills/management techniques is helpful.
  • It is often advised that people with EDS/HSD attend a pain clinic/pain management programme especially if their pain is drastically affecting their quality of life. There are ones which are funded by the NHS. Find more information about this in the section titled ‘pain management programmes’ earlier on this page.

Non-medical pain relief

Not limited to but including the following:

Aids and Adaptations

Heat/warm therapy vs ice/cool therapy for pain management

Rest, relaxation and enjoyable activities

Taping, braces and splints

Breathing for pain management

Key points

  • We all experience pain differently and we are all affected differently, and we all require different support and tools to help us through.
  • Some people find that when they are in lots of pain or are expecting pain to come on/worsen they may hold their breath or not breathe so deeply.
  • Heat/warm therapy helps with blood flow to the area it is applied to; this can help muscles to relax.
  • Ice/cool therapy reduces the blood flood in the place it is put on. This slows down the speed/amount of inflammation.
  • Rest is sometimes the most productive thing you can do for yourself.
  • Many find having something to try and take the mind of pain/experience something nice in the day aside from pain can help.
  • Box breathing and Diaphragmatic breathing are two examples of breathing exercises
  • When pain is bad, breathing through pain can be helpful for some.

 

The benefits of using plant Medical cannabis or Cannabinoid Medicine combined with mindbody and functional medicine approaches in Chronic Illness, targeting the Endocannabinoid System (ECS)  Dr Gordon is a Canadian, British and American double board-certified medical doctor. She is an internationally leading expert in cannabinoid and integrative holistic medicine who has treated thousands of patients using this approach over the past 15+ years in Canada and the UK. She is the founder and Medical Director of The London Resilience Clinic, her UK medical clinic specialising in the holistic treatment of multi-symptom chronic illness conditions and neurodivergence. She trained the UK’s first cannabis medicine specialist physicians, is a founding member and former vice chair of the UK Medical Cannabis Clinicians Society (MCCS).  She is an American Board Specialist in Integrative Medicine, the newest American sub-specialty of mainstream medicine focused on the intersection of conventional and natural evidence-based medicine. She is an international Hachette author of ‘The CBD Bible’ (2020) and The Resilience Blueprint (April 2023). She has been regularly featured on TV and publications including the BBC, Vogue, Marie Claire, The Sunday Times and the Guardian. Research has shown that endocannabinoid levels are altered in people with many chronic conditions from fibromyalgia and chronic fatigue to depression which may explain the many multi-system symptoms. The ECS dysregulation can be targeted therapeutically using medical cannabis.  These are now made as legal medicines and can be prescribed by a doctor with specialised training. They are a whole group of medicines, not just a single medicine and can be personalised to each person, even if you have not been able to tolerate or respond poorly to other medicines.  Dr. Gordon will share how she uses these in EDS and similar complex chronic illness disorders in combination with specific mindbody techniques to improve brain-body and nervous system regulation, reduce pain, improve a variety of difficult to treat symptoms and improve resilience, mental and physical wellbeing and quality of life Contrary to popular belief, these types of medicines do not make you feel high or stoned like smoking recreational cannabis can. The benefits of using plant Medical cannabis or Cannabinoid Medicine
Professor Ravindran will be discussing a multidisciplinary systems approach to pain management in EDS and hypermobility including medicinal cannabis. Professor Deepak Ravindran has over 20 years of experience in helping people overcome their pain – in the NHS and private practice. He is a Hon Professor at the Teesside university, Fellow of the Royal College of Anaesthetists, a Fellow of the Faculty of Pain Medicine, and a Consultant in Pain Medicine and Lifestyle Medicine. He presently serves as the Director for Pain and Lifestyle medicine at the Reading Central PCN. He is one of the few consultants in the UK who possesses triple certification in lifestyle medicine, musculoskeletal medicine and pain medicine. H He has been a consultant in pain medicine from 2010-2024 at the Royal Berkshire NHS Foundation Trust in the UK. He is passionate about pain education and improving pain and health literacy and the author of the Amazon Best Seller, the Pain Free Mindset. His Youtube channel aimed at providing good health information is approved by Youtube Health, the Academy of Medical Royal Colleges and WHO FIDES network. A multidisciplinary system approach to pain management in EDS & hypermobility inc medicinal cannabis
Kim Clayden - Solution Focused Psychotherapist & Clinical Hypnotherapist. The neuroscience behind pain and the impact of stress, various pain signals, its evolutionary purpose & more. Looking at how to reduce chronic pain signals and how to positively self manage  complex health conditions in a safe, natural and effective way The neuroscience behind pain and the impact of stress
Pain Management in EDS
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