The experience of living with chronic pain can be extremely difficult. There are a wide range of chronic pain diagnoses which have their own set of symptoms and accompanying challenges. We’re all individuals, so even within one type of chronic pain, each person will have different experiences and differ in the way the pain affects their day to day lives. 

In this article we’ve been lucky enough to have some chronic pain warriors with a range of conditions share their experiences. They will also share tips for coping and messages of hope, because even though living with chronic pain is tough, there is always light amongst the darkness!

Musculoskeletal Pain

Musculoskeletal pain is chronic pain which affects the joints, bones and muscles, as well as the surrounding soft tissues.

Back pain

Back pain is one of the most common types of chronic pain experienced. The pain can be felt anywhere in the back, although is more commonly felt in the lower back. Often chronic back pain will follow an initial injury, but can also be brought on without an injury

Symptoms of back pain can include:

  • Shooting or stabbing pain anywhere in the back
  • A dull ache
  • Muscle stiffness
  • Increased pain with activity such as bending or lifting, as well as general exercise.
  • Reduced range of motion

John shares his experience:

How it feels

“I constantly feel on edge due to my back pain. Simple things such as turning over in bed while in mid sleep can cause discomfort and stress. I find it difficult to pick up my children and sometimes even simple things like squatting down can cause a flare. Doctors can’t understand where this pain originates or even why it’s present. The thought of having to live with a bad back is terrifying and I often find myself worrying or thinking about my back.”

Tips for coping

“I find when I ice my back and lay flat I find moments of relief. When performing a task such as bending or picking up my kids I sometimes take a deep breath to try and relax. 

I find when I can relax and put my mind elsewhere the pain subdues so I can perform these tasks without too much pain. I have recently found that light exercise is helping overall. This may sound counter intuitive but I am finding the more I exercise the better I am feeling.

I also made the big step of visiting a pain management clinic, and so far that’s been really helpful. Understanding how I can train my brain away from pain, has opened a whole new world of options.”

Steph shares her experience:

How it feels
Back pain affects so many of us sadly. I first injured my back at the age of 23 and 28 years later, I’m still in constant pain. There still seems to be so many unknowns about back injuries and surgery can be dangerous. I now have a spinal cord stimulator implanted which is like an internal TENS machine and has helped somewhat with nerve related pain down my leg.

Because it’s invisible to others, it’s hard for people to understand how intense and debilitating back pain can be. Sufferers like myself feel like we are not taken seriously by some doctors and often seek alternative treatments at our own expense like acupuncture, chiropractic etc.”

Tip for coping
Personally, I find a heat pad is my best friend for back pain and also need to spend long portions of time laying flat out and resting. I wish people could understand how hard it is to live with constant pain like this and to cut us some slack as we are not lazy or work shy.

If you are getting persistent back pain issues, please push for scans etc to investigate as I ignored mine and kept trying to work through it for a long time and it was a mistake as it caused more damage. Also, there are lots of support groups online for chronic pain which I’ve found helpful such as Pain Concern and Pain Support.”

Fibromyalgia

Fibromyalgia causes widespread pain among a wide range of other symptoms. The exact cause of fibromyalgia is unknown but it’s thought to be caused by a change in the way the central nervous system sends pain messages around the body. Fibromyalgia can be triggered by an emotionally or physically stressful life event. 

There are a very wide range of symptoms of fibromyalgia. Some of the more common symptoms include:

  • Widespread pain
  • Fatigue
  • Muscle stiffness
  • ‘Painsomnia’: meaning trouble sleeping due to symptoms
  • Fibro fog’: cognitive difficulties
  • Temperature regulation control issues
  • Allodynia: experiencing pain from stimuli which wouldn’t normally cause pain.
  • Hyperalgesia: An increased sensitivity to pain.

Jayne shares how living with fibromyalgia feels

You can find Jayne on Twitter

How it feels
Living with fibromyalgia is incredibly difficult, from it limiting what you can do each day. To the way it makes you feel almost all the time.

It is a debilitating condition, it affects your cognitive abilities, with what is now dubbed as ‘fibro fog’. The medical experts describe the condition as ‘widespread pain with severe fatigue’. But it’s a whole lot more than this, it’s like walking up the stairs with heavy weights, tied to them. It literally weighs you down.

Nobody can predict what’s going to happen next, but when you’re living with fibromyalgia, this becomes even more pronounced. A healthy person can plan their days. Unfortunately, this isn’t possible for a fibro sufferer, as we don’t know how we’re going to feel from one to the next. 

You would assume that the pain would be the worst symptom of living with the condition. And yes, the pain is unbearable at times. But I would definitely say that the extreme fatigue is the most difficult. It’s like waking up every morning feeling unreplenished and feeling like you had a heavy night of drinking the day before.”

Tip for coping
One of the ways that helps me in coping with my fibromyalgia, is learning to listen to my body. When my body indicates that it’s time to rest, then this is exactly what I do. Pacing also helps to prevent me from overdoing things and suffering from the consequences if I do.”

My experience with fibromyalgia

How it feels

“I’ve been living with fibromyalgia for many years now and can safely say it’s one of the hardest things I’ve had to deal with in my life. The feeling of pain is hard to describe, it can vary so much. Sometimes it’s a stabbing pain; other times I experience shooting pains; often there’s a dull ache; and other times there’s such an intense pain that I cry out. 

Oddly enough, it’s not the pain which I find most difficult to deal with. It’s the all consuming, debilitating fatigue which completely floors me and is so much harder to function through than any pain. I always describe it to those without chronic illness as the feeling you get at the end of a busy day when you’re exhausted: you need to go to bed because you can barely keep your eyes open, and you know you can’t function much longer. Imagine getting up in the morning feeling that way, and knowing you’re only going to get more tired throughout the day.”

A message of hope

“Despite all of the challenges, since I’ve discovered effective chronic pain treatment and management techniques, things have improved vastly! Over the last few years I’ve seen a gradual decrease in symptom levels and an increase in energy. I’ve been able to regain mobility and my level of functioning. I’m enjoying lots of exercise and living an active, full life. There is hope despite chronic pain and there are ways to keep moving forward.”

Arthritis

Arthritis is a condition which affects the joints, causing inflammation, stiffness and pain among other symptoms. Arthritis can affect one joint, or multiple joints. There are many forms of arthritis, although the most common types are osteoarthritis (OA) and rheumatoid arthritis (RA).

The main symptoms of arthritis include:

  • Inflammation in and around the joints
  • Stiffness
  • Tenderness
  • Reduced range of motion
  • Weakened muscles
  • Warm, red or itchy skin over the affected joint

Jayne shares how living with arthritis feels

You can find Jayne on Twitter

How it feels
“Arthritis is essentially pain in the joints caused by inflammation, it can also cause them to become deformed. It can also result in the sufferer having to use a walking/disability aid. It’s a painful condition to have and limits your mobility significantly. If left untreated it can worsen and start affecting other areas of the body. Not everyone needs to treat it with medication and can have physiotherapy instead.”

Tip for coping

“My message of hope to fellow Arthritis sufferers is, don’t feel guilty for having the condition. There is lots of support out there, stay strong and think positive.”

Jan shares how living with rheumatoid arthritis feels

You can find Jan over on Twitter.

How it feels

“I always knew my mum had rheumatoid arthritis but, when I returned from holiday one year to find I had unusual pains in my wrists and then ankles,I never dreamt that is what I had. My local GP decided very early to refer me to a rheumatologist. He had to come to my house to diagnose me as within the space of 10 days I was stuck in a fetal position. He got me into the Harrogate Royal spa hospital which dealt solely with RA and spondylitis. Over the space of approximately 6 weeks, with the use of steroids and very specific therapy, they gradually got me moving again. They transferred me into their flat for a week to prepare for going home. 

It took another 18 months for me to be settled on my medication and resume my normal life but, unfortunately, the initial flare was so severe that the damage to my cartilage was already done. I had to have my hips replaced in 2010 and a knee replacement in 2011 but managed to hold out until approximately 2018 before I became a wheelchair user for the most part, largely due to the arthritis in my spine.”

Tip for coping

“To describe how you deal with the pain I always say I have a file marked RA pain and, if I recognise it as that, I can simply put it in that file and get on with my day.”

Ankylosing Spondylitis

Ankylosing spondylitis is a form of arthritis causing the spine and other areas of the body to become inflamed. Over time this can cause the vertebrae (bones in your spine) to fuse, which reduces mobility. 

Zoe shares how it feels to live with ankylosing spondylitis

You can find Zoe on Twitter

How it feels

“Living with invisible pain feels like being gaslighted by your own body. I spent two years wondering why no one could see the fire in my joints and if maybe I was just being dramatic. I was in so much pain in my back, my hips, my neck, my feet, my hands; pain that came so randomly and fiercely or sometimes just throbbed ceaselessly. Sometimes it felt (and stills feels) like being crazy. I look healthy, I am young, I am vibrant. How can I be constantly in pain and constantly exhausted by my own body fighting itself? 

So many people live with a silent pain like this. Mine is called ankylosing spondylitis and it means my immune system attacks my joints. For me, that big ugly word wasn’t terrifying: it meant I finally had a name for my pain, it meant I could start healing, it meant I was telling the truth.”

Tip for coping
Having a diagnosis is by no means the end of the ordeal; immune diseases can’t be cured. However once you know that you aren’t fighting a foreign enemy, but rather learning to care for a body that is hurting itself, you can take better care of yourself. Sometimes that means diet changes, regular exercise, and medications. But it’s not you vs your body. Your body is a temple, a temple that’s falling apart a bit, and you are the groundskeeper that takes care of and repairs the temple and keeps it beautiful and happy for years to come.”

Chronic Fatigue Syndrome (CFS/ME)

ME stands for myalgic encephalomyelitis. While the primary symptom is extreme fatigue, there are a range of other accompanying symptoms patients can experience. There are a number of theories around the cause of ME, but much more research needs to be done to find the answers and treatment that people with ME deserve. 

Symptoms of ME can include:

  • Fatigue
  • Problems sleeping
  • Joint and muscle pain
  • Reduced mobility
  • Cognitive issues 
  • Headaches
  • Flu-like symptoms
  • Irregular heartbeat

Andy shares how living with ME feels

How it feels
How it feels? Boring, painful and very limiting.

Being permanently fatigued and in pain affects everything I do and stops me from doing normal things, like standing up, walking, and going out. If you have ever run a marathon, had 24 hour flu and jet lag at the same time whilst wearing a suit of armour and wading through treacle, then you may have some idea what ME/CFS is like.

It is relentless. I have not had a “good day” in 17 years, not one day off. One of the cruelest aspects is having insomnia. Being exhausted but not able to sleep is torture.

Having ME/CFS is so frustrating as treatment options are limited and many doctors are clueless. It is also frustrating as it severely restricts what I can do. Everything I do has massive payback. So enjoying myself is difficult and usually unrewarding due to experiencing post exertional malaise from doing anything. ME/CFS is very socially isolating as I can’t join in with most social activities.”

Tip for coping
Ignore quack cures (focus on science)

Find friends on social media with the same condition. They will understand.

You are your own best doctor. 

If it helps, do it.

Never surrender

Katy shares how it feels to live with ME

How it feels
Ironically this condition takes everything from you and leaves just ME! So it’s named quite well. Mostly, it’s a lonely and depressing condition. Especially as if like me you have multiple invisible illnesses. I suffer dreadfully with back pain, I can’t lift anything or carry shopping, walk up stairs unaided, some days I can’t even go to the bathroom alone. I am 35 years old and I have to ask my teens to help much more than they should! 

CFS/ME is so annoying. You could sleep 24 hours then wake up and know you should feel refreshed and ready for life but you’re not! You feel like you had no sleep, look like you have been attacked by a vampire racoon, and can’t even lift a cup of much needed coffee! I’ve seen GPs and medical professionals all the way from trainee to consultant and surgical teams. I’ve had every test from bloods to scans to MRIs to internal exams. I’ve tried medication, both prescribed and herbal! Still the same outcome. Most hospital and GP visits end with me in tears and getting no help whatsoever! 

The whole it’s in your head, you have to move or you will be in pain is frustrating. Try walking to the bathroom in my body and then you tell me it’s in my head! I have other conditions that the CFS/ME affects so mostly I’m in bed resting! I can’t work as I can’t guarantee that I can get there everyday or even last the whole shift! So I lost my job, one I had worked extremely hard to get and many years with the business! 

I can’t go on days out with my family. Even a small trip to the park puts me in bed for 3 days! I can’t even have a shower without needing to rest for 30 mins after. Yet the worst thing about this condition is you start self isolating: you say no to friends so they stop asking and talking to you; you say no to family and they think you’re being selfish. You’re left with no support and no way out!”

A message of hope
I am so very lucky, I have 3 children who are amazing and look after me! I have the most wonderful partner who adores me and in spite of the mood swings and the pain, the tears and the laughter, he never leaves me! Not everyone has this! 

My closest friends now are from social media. The Twitter CFS/ME and chronic illness community is the most amazing community I’ve ever been part of and is a lifeline. Despite the fog and forgetfulness; the exhaustion and ridiculous sleep patterns; the important things in life I have to miss: I’ll never give up. This condition will not beat ME!

Neuropathic Pain

Neuropathic pain is caused by damage to the nervous system: this can be through accident or illness among other causes. It’s typically the somatosensory nervous system which is damaged, which is the part of the nervous system which detects and processes both internal and external stimuli.

Carpal Tunnel Syndrome (CTS)

CTS is caused by the nerve in the wrist being inflamed, damaged, or experiencing excess pressure. This leads to a range of symptoms including:

  • Pain in the arm, hand, or fingers
  • Numbness
  • Tingling sensations
  • Weakness and reduced mobility in the affected area

Samantha shares how living with CTS feels

How it feels

“Carpal Tunnel Syndrome: when people hear it, they often think of some mild hand or wrist pain. For me, I assumed it was just the work I was doing (CNA) causing some mild symptoms. Symptoms actually can extend into the upper arm, pain being only one symptom. 

Around 18 I started dropping things and losing feeling in both hands. They would feel weaker, which greatly frustrated me given my work in healthcare. I now experience more severe pain, tingling, and weakness in my hands/wrists. I notice the weakness most when trying to do yoga. I got braces and offered my wrist as much support as I could. I opted out of surgery for this, but I know that surgery for many is a successful route. 

I still drop things all of the time, so I barely drink out of glass or use glass dishes. I mainly buy my favorite brand of strong, washable plastics at Target. So If you also need very affordable, strong, long lasting plastic items to eat/drink with. I highly recommend it.”

Tip for coping 

“Living with CTS can be challenging. We all feel it differently and the stigma can be a pain to deal with. No pun intended. Just know that you will figure things out in your own time. Things like this are trial and error as to what works and what doesn’t. Take your time, be patient.”

Repetitive Strain Injury (RSI)

RSI is chronic pain felt in the muscles, nerves and tendons caused by overuse or repetitive movements over time. RSI can be felt in the hand, wrist, arm, neck and shoulders. 

Symptoms of RSI include:

  • Pain
  • Stiffness
  • Tingling
  • Numbness and weakness
  • Cramping 

How it feels

My pain initially started in my right arm, and it was the occasional sharp pain that would force me to stop whatever I was doing. 

I managed the pain for the first few weeks with ice and painkillers, whereas I should have rested. That’s when pain spread to both of my arms, and got so bad that any fine movement of the hand and finger muscles would cause a ripple of pain.

The pain was usually sharp – streaming up and down my arms (although mainly in the forearms). If I really overdid it one day, then my arms would ache.

Tips for coping

I faced years of disability, and a merry-go-round of failed treatments. I spent a lot of time and money on massage, acupuncture, and physiotherapy – all of which would provide some relief short-term, but pain would always return.

I tried diet changes, stretching, yoga, decreasing and increasing sports activity, and all kinds of oils and ointments. Nothing would address whatever the root cause of this pain was.

By this time, I had seen several doctors and received more diagnosis beyond RSI. I was told that I also had tennis elbow, golfers elbow, and carpal tunnel syndrome. One of the doctor’s that I placed my faith in was a highly credentialed hand and arm specialist. After being sent for nerve conduction studies and an ultrasound, he diagnosed the pain as cubital tunnel syndrome. 

He recommended they operate on both arms. The procedure was an ulnar nerve transposition surgery – basically, moving the chunky nerve that runs down the elbow, to under the forearm muscle. The logic behind that was that the ulnar nerve is being irritated, and we should move it to a safer position.

Excited that this would finally fix me, I went for it!

A few weeks after I recovered from the trauma of surgery, as per the doctor’s recommendation, I started easing back into computer work and typing. To my horror, the pain was still there! In the same places, and with the same intensity as before surgery. 

I felt like I had exhausted all options. After a few months of encouragement from my family, I reluctantly went to see what I thought would be the last doctor I’d visit. After a couple of examinations, the doctor explained that there was nothing wrong with my arms, mechanically they were fine. But, due to years of desperate treatment and anxiety, my pain system had become overactive and oversensitive.

My brain was now in the habit of creating pain whenever I feared and expected it to come on. She explained how the brain can sometimes create pain, with little to no stimuli, like in the case of phantom limb pain where someone will feel 100% real pain in a limb that isn’t there. 

Naturally, I asked what the treatment was for a sensitized pain system. “Is there some sort of pill I can take?” (Lol)

She was able to offer some basic and sensible suggestions: get back to work and pace yourself, take regular breaks, but not much beyond that.

It didn’t matter – she had thrown me a lifeline. Her explanation of how pain works filled me with hope and motivation – knowing that it’s possible to change pain, and that pain doesn’t equal damage, filled me with hope and motivation.

I went home and digested all the pain science that I could. It was a goldmine. How could no doctor have explained all this to me!? There are so many proven ways we can desensitize our pain system, and train our brain away from pain. 

Factors that are hard to measure that invisibly sit in your head such as pain beliefs massively change our experience of pain. How you and others talk about pain matters. Peer-reviewed scientific journals prove that practices such as visualization, breathing exercises, grader motor imagery, expressive writing, and so much more – can make a real difference to the pain you feel.

By practicing these techniques, within just a couple of months, I was 100% pain-free. Life changing, and it’s something that still amazes me to this day. It was the motivation that led me to create Pathways (the site you’re on now). Essentially, a product that could take a skeptical pain sufferer like me, to being pain-free. No pills, no gimmicks. Just natural chronic pain relief (download links below).

Sciatica

The sciatic nerve runs from your lower back, all the way down through your hips and each leg. Sciatica refers to pain in the sciatic nerve, commonly caused by compression of the nerve. The pain is typically only felt on one side of the body. 

Symptoms of sciatica include:

  • Pain anywhere along the path of the nerve
  • Numbness
  • Tingling
  • Muscle weakness

Carolina shares how living with sciatica feels

You can find Carolina on Twitter or at her website

How it feels
I had heard of sciatica but until the end of February, I had never experienced it personally. I hope I never have to again. It is caused by a bulging disc in the lower back compressing the sciatic nerve sending pain all the way down the back of the leg. For me, the worst affected areas were the back of the thigh and my calf. 

Despite being on a cocktail of 5 pills, the pain would start from when I got up and took a shower, and persist until I lay down again at night. I couldn’t shower without having to lie down immediately afterwards. Standing for more than about 10 or 15 minutes was torturous. Sitting was no better. Preparing meals was an ordeal as mid-way through I’d be in crippling pain and had to lie down.

My physio had me walking to the end of my road and back 3 or 4 times per day. The walk back was more of a limp as I literally grabbed hold of my leg and dragged it behind me. I felt utterly useless at home as lockdown had set in so my husband and two boys needed extra attention! I was unlucky. Physio said 8 weeks, it lasted 15. This tested me to my limits, but I was also training for the London Marathon. I run for my mental health so these 4 months were supremely challenging on that level as well.”

A message of hope
Thankfully, one day I turned a corner. I noticed I could sit for longer, stand for longer. I was able to walk around the block with decreasing pain, then two blocks. Finally, I started forgetting to take my evening medication and not feel in any more pain the following day as a result. I am now walking 5 km pain free and the running light is re-appearing at the end of what has felt like a very long dark tunnel. Happy days.”

Steph shares how living with sciatica feels

How it feels
Sciatica is a relentless, burning intense pain from damage to the sciatic nerve. It affects the lower back, buttock, leg, foot and it never stops. Most pain medications don’t seem to work on nerve pain and unlike muscle or ligament injuries, you can’t just push through the pain and keep going as it just becomes more and more intense and unbearable. 

Personally, I find the only answer is to immobilise myself and rest. There is some limited relief with freeze gels or lidocaine patches too (if your GP agrees the expense as they’re on the “red” list). I also find a heat pad is soothing at times though that’s more for back than leg/nerve area. 

If I could describe it to someone I’d say it’s like having really bad sunburn down the back of your legs, as if your skin doesn’t fit anymore and is constantly tight and burning.”

Tip for coping
Remember that there is no pushing past nerve pain like this so allow yourself proper rest and recovery. It’s also worth getting the cause of it investigated as some people find miraculous results with disc surgery if this is the cause, though surgery is always a last resort option.”

Headaches And Orofacial Pain

Chronic headaches can vary in severity and can be very debilitating to live with. Orofacial pain refers to pain which is felt in the face, mouth or jaw area.

Migraine

There are a few types of migraines which can vary in severity. Migraines are common and for some people, can be experienced frequently throughout their day or week. 

Symptoms of migraines include:

  • A throbbing or dull pain which is often on one side of the head
  • Nausea and sickness
  • Dizziness
  • Sensitivity to light and sound
  • Aura: flashing lights which can be seen before or during a migraine

Norita shares how living with migraines feels

You can find Norita over on Twitter or at her website

How it feels
I’ve had migraines since my brain injury after a fall off stage at work in 2006. It used to frustrate me but migraines have taught me a lot about self-love and being gentle with myself. Being an ambitious person at times used to make me have migraines every week and at times, I will be in bed 2-5 days each time. It took me years to learn how to manage my migraines and nowadays, even with running my own business, I only have mild migraines 1-2 times a year.”

Tip for coping
What helps me is learning to incorporate self-care daily in my time management. My

non-negotiable self-care routine each day is meditation, learning to listen to my mind and body when it starts to show signs that I need to rest, and clean eating (I can’t get enough of my smoothies and green juice). 

One thing I do each time when the migraine hits is a self-healing tool which includes lying down while doing my breathwork and visualising myself covered with a blanket of loving energy of hearts and rose petals and comforting my brain with healing words. It definitely works each time!”

Cluster headache

Cluster headaches are quite rare. They are extremely severe, intense headaches with pain typically felt in one side of the head and often around the eye, face and temple. 

Symptoms of cluster headaches include:

  • Extremely intense pain
  • Nausea and sometimes sickness
  • Red, irritated and watering eyes
  • Drooping or swelling of the eyelid on one side of the face
  • Blocked or runny nostrils
  • Excess sweating particularly around the face
  • Restlessness and agitation

Andy shares how living with daily cluster headaches feels
How it feels
What is living with cluster headaches like? It is a pain and painful.

Cluster headaches come on very quickly. They start with a slight nausea and woozy feeling and rapidly accelerate to agony. If you have had a severe blow to the head that makes your ears ring and the room swim with a heavy crushing pain, then you might imagine what it is like. When one bangs one’s head, the pain is intense but fades. With a cluster headache, the pain does not fade but goes on for hours. For me, it is always on the right side of my brain above my eye. It is no coincidence that cluster headaches have been called suicide headaches. I assure you, the pain is the most severe I have ever experienced. I am just lost swimming in a world of pain and almost delirium on occasion. I can’t talk when it is bad. 

Living with it means I have to carry an oxygen cylinder and mask with me when I go out. As you can imagine, this is extremely awkward. Alternatively I can take Imigran (a medication) which floors me. So going out becomes more of a chore. Even small oxygen bottles are heavy and cumbersome. Plus an oxygen mask is not my most attractive feature.

Cluster headaches take their toll. They hurt a lot and make me feel nauseous, as does the medication. Not knowing what causes them does not help to allay any fears. I get 2 to 3 a day usually. Occasionally I get a day off. There are no discernible triggers.”

Tip for coping
A word of hope: get oxygen therapy, get Imigran (a quick acting nasal spray of Sumatriptan), and get a MRI scan to rule other things out. “

Visceral Pain

Visceral pain refers to pain which stems from your viscera: your internal organs. Visceral pain can cause inflammation, a range of pain symptoms and a variety of other symptoms depending directly on the organ affected.

Irritable Bowel Syndrome (IBS)

IBS is one of the most common visceral pain conditions. IBS affects the digestive system. The symptoms of IBS can come and go throughout the day, or can flare up in reaction to certain foods and drinks. 

Symptoms of IBS include:

  • Pain or cramping in the stomach
  • Bloating
  • Diarrhoea
  • Constipation

Samantha shares how living with IBS feels
How it feels

“When I was a child, I was often constipated. It eased a bit as a teenager, but I did notice how foods that should not make me sick, did. I spent a lot of time with my GP and then with Gastroenterologists. They said I have IBS. 

Of course by the time I got someone to listen and not blame anxiety or my being a woman, it was much worse. Over time I have stopped being able to eat many foods, including any dairy. My other GI issues, while not caused by IBS, do accompany and worsen it. I get bloated, gassy, nauseous, crampy, and fatigued when I eat something my IBS does not like. This makes having a restricted diet (due to other illnesses), much more difficult. For me it was never only IBS, but the IBS always makes it harder to eat with security.”

Tip for coping
I will say this, trial and error. You will find what works for you, what makes you sick, and what makes you feel good. I recommend elimination diets IF your care team decides they are *safe* for you to do.

Never feel like you should be ashamed or embarrassed of normal bodily functions like passing gas, pooping, burping, etc. Do get help from a specialist when it becomes an issue to your health, and not just something every human alive experiences. Stigma can be heavy for some living with IBS. Just know that no one knows your body or what’s best for it like you do. IBS can be embarrassing, but it is not the end of the world. Smile, keep your head up, and take care of yourself.”

Jan shares how living with IBS feels

You can find Jan over on Twitter.
How it feels
I suspected I had IBS many years before I was diagnosed but my doctor just ‘poo pooed’ it (you’ll excuse the pun). I can’t remember the first tablet that I was prescribed but it didn’t seem to do anything at all. Eventually I was moved on to Buscopan which I take about half an hour before each meal and that seems to help quite a lot. 

Before medication I would have three days where I couldn’t go to the toilet at all and then 24-36 hours where I’d have diarrhoea and it would stop me from going out because I didn’t want to be stuck in public toilets or in the car when I would have such urgent need for the bathroom. I had a bidet fitted in the bungalow which makes me feel a bit ‘cleaner’.

Pain can be quite strong but I have suffered from constipation since I was a young child. My GP gives me Fybogel (a laxative) to take every day but I find that too much for me, so I just note if I haven’t been for 36 hrs, then I take one. The other things that help are having a daily handful of nuts, grapes, or liquorice, but being diabetic I can’t have the latter too often.”

A message of hope
Things have been less severe over the last year and I wonder if it’s anything to do with the fact that I now take insulin substitute injections for my diabetes. Whatever the reason, I am very grateful I can go on car journeys more often now. I still have bad days, especially if I get stressed about something, but can cope with ‘now and again’ rather than the ‘always’ of the past.”

Endometriosis

Endometriosis causes the lining of the womb to grow in other areas of the body where it wouldn’t normally be. This can include the ovaries, fallopian tubes, the pelvis, the bowel, the bladder, the intestines and more. 

Symptoms of endometriosis include:

  • Pelvic pain (which worsens when you’re on your period)
  • Severe period pain
  • Pain when you go to the toilet during your period
  • Pain during or after sex
  • Problems getting pregnant

Samantha shares how living with Endometriosis feels

How it feels

“When I got my first period at 13, I knew something was wrong. Don’t ask me how, because I can’t answer. It was so painful, heavy, and draining. I said nothing, because no one told me about what is and is not normal for periods. Fast forward into high school. I would sit in class and cry from the pain. I brought this up to my GYN, who brushed me off and said to take birth control (which ended up making me sicker for a decade before I realized and came off). 

I tried one pill and method after another. I turned 18 and went through multiple GYNs trying to get help. Finally, one did a laparoscopy and found endometriosis and cysts on my left ovary and fallopian tube. She did not remove it, but cauterized it. Problems eased for a wee bit and came back. I again had to go through multiple GYNs that did not think it was endometriosis AGAIN, before I found one willing to help. He went in and again found endometriosis, but excised it this time. I was 25 for this one. 

For over a decade I battled painful, heavy periods with no answer. The stigmas towards endometriosis are garbage. There is NO cure, so do not let them lie to you. I now manage the best I can naturally, and keep up to date with my surgeon.”

Tip for coping
If you have awful periods and your body is screaming at you that something is wrong, LISTEN to it. Advocate for yourself, and never stop fighting. You fight a hard battle, but you never have to fight it alone.”

How to re-frame the experience of living with chronic pain

How we perceive our pain can have a significant impact on our pain levels and the experience of living with pain. Although living with chronic pain is undeniably challenging, there are ways that we can reframe our thoughts about pain to perceive it in a more positive way, just like many of these chronic pain warriors have shared with us.

Know that chronic pain doesn’t equal damage

The sensation of chronic pain in itself doesn’t mean that there’s damage in your body. Chronic pain is like a faulty alarm system, sending out pain messages even when they don’t serve a purpose. Sometimes remembering that in itself, the pain isn’t actually going to ‘hurt’ you, can help to alleviate fears and help you to cope with the pain.

Think of yourself as a warrior

Instead of thoughts of helplessness and lack of control, focus on the fact that you’ve kept going despite it all! Imagining yourself as a warrior who is battling your chronic pain and is determined to win, can help you to feel empowered. Even though it’s hard, you’re still fighting and you are not going to give up!

Find purpose and joy

Searching for moments of joy in your life can be a powerful way to help yourself cope and to keep yourself going. Finding purpose, such as work or a hobby you are passionate about, can be a great way to keep you motivated.

Focus on the good

Instead of focusing on the negatives of chronic pain, try to replace these thoughts with a more positive outlook. For example if you think, “This pain is horrible and it’s destroying my life”, instead you could replace this thought with, “Although this is horrible, I’m still fighting and look at all the good things I do have in my life!”. Focusing on the good you have in your life despite the chronic pain can keep your spirit’s up and help you to maintain hope.

Don’t be afraid to express negative feelings

Even though it’s important to try to focus on good things, this doesn’t mean you aren’t allowed to express how you feel! Nobody can be positive all the time, so know that re-framing your thoughts doesn’t mean you have to bottle up your feelings. Chronic pain is hard to say the least. You’re allowed to acknowledge that.

Know chronic pain doesn’t define you

Chronic pain does not change who you are. It doesn’t make you any less worthy, beautiful, strong or any less you. You are still the same person you always were. When you find yourself thinking that chronic pain has changed your life, remember that.

Don’t be embarrassed about your symptoms

As one of our wonderful contributors Samamtha shared, it’s important to know that your symptoms are nothing to be embarrassed about. What is happening in your body is natural even though it’s awful: it’s not your fault!

Find ways to set goals

Although it’s easy to feel that you can’t reach your goals or plan for the future because of your chronic illness, try to work on re-framing these negative thoughts. You can set goals and you can reach them! It may take longer, you may need a little help, and perhaps the future may look different than you had imagined, but it doesn’t mean you can’t get where you want to go in the end.

Seeing challenges as opportunities

When we face problems, instead of seeing these challenges as a negative, we can look at them as an opportunity to learn and be creative. It’s useful to remember that you’ve found a way to deal with every challenge you’ve faced so far: you will continue to do so.

Finding support

As 3 of our pain warriors Steph, Jayne, and Katy mentioned, finding support is so important and can help us to re-frame our experience of chronic pain in a more positive light. Whether it’s friends (online or in person), family, support groups or chronic pain charities, real support is invaluable.

Don’t give up!

As Andy and Katy shared, no matter what, don’t give up on your fight against chronic pain. Even when times are hard, believe in yourself and know that you are not going to let it win.

Be kind to yourself

It’s all too easy to be hard on yourself when you live with chronic pain, but instead of being harsh with ourselves, we can learn to be kinder and more compassionate, as we would towards others. As Zoe and Norita shared, practicing self-care is vital.

Know you are capable

Chronic pain can make us feel that we are not capable of so many things. Now is the time to replace these thoughts gradually with encouraging thoughts and actions. Know that you are capable! You can thrive despite your chronic pain.

Focus on what you can do rather than what you can’t

Focusing on what we aren’t able to do because of our chronic pain can frankly be really depressing. Instead try to focus on what you can do, and you might realise just how much you are still able to enjoy your life and live well despite chronic pain.

Know your activity level does not define your worth

It’s vital to remember that even if you are not able to be active, this does not make you worthless! Your activity level and how healthy you are does not define how worthy you are! You are amazing; don’t let your mind tell you any different.

There is hope

Finally, but perhaps most importantly, remember that there is always hope. There are effective treatments and pain management techniques to help you to reduce your symptoms and to help you live the life you want to! Life can still be beautiful despite chronic pain.

And remember, we’re here to help you on your journey to getting better. We created an app to help pain sufferers get past pain. Download links below!

Please note: This article is made available for educational purposes only, not to provide personal medical advice.

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