I'm 25 but I first started with pain more than 10 years ago. Back then it was just one shoulder and while that still gives me a lot of trouble I now get pain all over.
I just got back from a trip to London with family and really felt like I was such a limitation at times with what they wanted to be doing. I got quite irritable at times because of the pain but what upset me the most was an assumption on their (close family) behalf that I was irritable because of tiredness.
It just really hurt me that people I felt understood me suddenly didn't.
Also things like going out with friends is increasingly harder to do. A few months ago I went and stayed over in a city with friends and we went for dinner then a night out. I struggled just walking to the restaurant then went home early because I could hardly dance when it hurts to lift my arm above my head.
Sorry for the long post,
I just feel like my life has been so limited before its even really begun
Sorry to read that your chronic pain is effecting your social life. Thank you for sharing your experiences. I can really relate to this post, with intense pain beginning for me at 23 years old. I will share what helped me in case it is useful for you as tools/ strategies that you may want to try
1) Trying not to plan too many activities at once/ not 'overdoing it' (pacing) and incorporating ' rest time' (I know this is often easier said than done)
2) Open communication - I would often assume that others were aware of the level of pain I was experiencing but later found out they weren't. I've found having open, honest communication with people I'm close to really helpful. It often lead to them offering their help. Unfortunately as pain is often invisible it is not always obvious to others.
3) Looking for social groups/ support groups can be really helpful for getting to know people who 'get it' (in terms of what it's like to live with pain). GP practices often have social prescribers/ community link workers so that could be a good place to start.
4) You may also want to consider looking at our resources for managing pain, which in turn generally makes socialising easier. Leaflet 'managing your pain' painconcern.org.uk/product/... Online Pain Education Sessions painconcern.org.uk/pain-edu...
I second everything the Pain Concern Admin said, but I would add another. Think about doing some volunteer work.
My son's pain started when he was very little but we didn't realise it. We thought he was just autistic (he is, on the high functioning end) but it turned out his feet have a defect that means standing and walking is really painful.
So one of the things we did was change our behaviour. We started pacing, making sure he could always sit where ever he went and explaining to people. Open communication is very important.
He is now 28 and also has chronic fatigue and pain in other places too. When he turned 18 I was getting fed up of being a carer for him and not having any social life, so I joined our Patient Participation Group (PPG) at the GP surgery. From there I became an Expert by Experience with our community hospital trust, and then I got poached to do some work with the Integrated Care Board (ICB) and the acute hospital trust as well.
Now, I can hear you thinking but what about your son in pain, how is that volunteering? I had to take my son with me, and slowly he became a volunteer in his own right. He has recently been participating in a workshop with the NHS Trust about working together with patient, carers and the trust. Yes, I happen to be at these session myself, but my son goes off in his wheelchair chatting to his new friends. One of those is retired and in a wheelchair too, and the two of them are such trouble blocking the corridors with their wheelchairs! And he is often talking to NHS staff too.
It has really opened up his life in a way that is accessible to him. He can pick and choose which meetings and groups he goes to, and if he is in too much pain they all understand. But at the same time he is giving something back to the NHS and he has a very different view of things compared to the usual retired people that attend these groups!
My son has me to advocate for him. I can step in and say 'we are leaving now because I can see my son is in a lot of pain'. Can you find a member of your family that you can talk to and together the two of you can educate the rest of the family?
Also, there may be a 'Living Well with Pain' type group locally, sometimes they are called something different. The social prescriber or care navigator at your GP surgery should know about them. They can be a good source of support, because people often make long term friends in these groups.
And just something else, often people in their 20s have a little transition and chop and change with their friends. Things happen, people move away for work, have a baby, get married, get divorced. So even without the pain you might have found that friendships when you are in your 20s move around a bit. This means that there will be others looking for new friends too. It can be sad to have to move on, but I hardly see any of my friends from my 20s, but that is fine, I have a lovely bunch of friends now that I wouldn't be without!
So hang in there, there are people out there for you somewhere!
I sympathise with you. I had an injury to my foot nine years ago and get nasty flareups when it’s so painful that I can’t go out of the house. This has limited my mobility considerably and to some extent makes me dependent on my partner. I have been offered surgery but it is risky and I do not want to become worse. I normally have lots of interests and places that I go to, but find myself having to stay indoors. This flareup keeps getting better and then worse again so it is very frustrating. I can empathise with the way that it is so isolating.
I do find that it is difficult for friends and family to understand the severity of the pain and the effect it has on my lifestyle.
As the reply from pain concern says, I think pacing is very useful and also incorporating some rest time.
It all began subtly during my college years—symptoms that seemed trivial at the time but would soon change my life forever. Fatigue weighed heavily on me, along with a persistent low back pain that I tried to ignore. I also noticed an odd swelling near my sternum, where my first rib meets the bone. I consulted several doctors, but they found nothing conclusive. Despite running tests, no diagnosis was made. With no answers, I convinced myself it was nothing serious. Over time, even the fatigue seemed to fade.
But the lower back pain never went away.
As time passed, the stiffness became worse. I started waking up in the night, unable to move, convinced that my old mattress was to blame. I replaced it, hoping for relief, but nothing changed. My mornings were filled with stiffness and pain. As a university student staying in a hostel, my daily life turned into a constant battle—juggling the demands of my studies with the growing discomfort that plagued my body.
The breaking point came on the last day of my final exams. My back and hips were in so much pain that I couldn’t sit through the exam. I had no choice but to leave early, feeling defeated. Back home, I visited the Haripur DHQ hospital, many private doctors, and even the CMH in Abbottabad, yet nothing improved. I even tried physiotherapy, but the relief was fleeting at best.
I lost count of how many times I had blood tests done, only to hear the same frustrating response: nothing is wrong. But I knew something was deeply wrong. The pain intensified, spreading throughout my body. My right arm became stuck in place, unable to move, making even the simplest tasks impossible. I developed a fever, and the pain seemed to worsen every day.
Soon, the pain reached my jaw, making it so stiff I could barely open my mouth to eat. Headaches were constant, and I felt trapped inside a body that seemed to be shutting down. Then my knees began to swell—so badly that walking became a challenge. Desperate for answers, I consulted another doctor who found fluid in my knees and performed surgery to drain it. But the pain lingered, still a mystery to all the doctors I saw.
At this stage, I was bedridden. I couldn’t move without using a stick and could barely take a few steps without extreme effort. The pain and disability had taken over my life.
That was when my younger brother’s friend discussed my condition with his cousin, a doctor. He invited me to his home to review my reports and examine my joints. After assessing me, he suggested I visit the KRL hospital in Islamabad, where he worked. There, a team of doctors took a closer look at my case. They ordered new tests, including X-rays of my hip bones, an ESR test, and the crucial HLA-B27 blood test.
The results finally provided some clarity. The HLA-B27 test came back positive, and my ESR levels were alarmingly high. I was referred to a rheumatologist, who carefully examined my condition and confirmed the diagnosis of ankylosing spondylitis—a painful, chronic disease that affects the joints, especially in the spine and hips. They explained that while the disease wouldn’t kill me, it was permanent and there was no cure. I would have to manage the pain and symptoms for the rest of my life. Even they didn’t know what triggered it.
I started treatment immediately, taking anti-inflammatory drugs, painkillers and steroids to relieve the pain. Slowly, I began to regain my mobility. After weeks of treatment, I was finally able to walk without a stick. However, the pain persisted, never fully leaving me.
Eventually, I found a job and started working again, which became an essential part of my journey. Having work to focus on helped distract me from the ongoing pain. But even after nearly ten years, the pain hasn’t gone away. It has left a permanent mark on my posture and has changed the way I walk.
Despite treatment, I am still living with this disease. The pain continues to affect my body daily. Even though I can walk without assistance now, the pain is a constant companion, reminding me that ankylosing spondylitis is something I will always have to endure.
Despite everything, I continue to push forward, living each day with determination and hope.
I have become completely isolated because of ongoing chronic pain. I used to be active and sociable but over the last five years have been debilitated with horrific all over a body pain mainly down the right hand side. Not being able to sit down without my groin and leg going numb and being an agony has made socialising impossible. I used to be out all the time and now I’m confined to the house. I’m going crazy. I drag my aching body to the swimming pool to get a little bit of movement but even that hurts. So yes I get chronic pain is and how hard it is to explain to others.
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All alone today...but not feeling alone :)
New/Strange Pains
This Pain is a real pain!! I’m sick and tired of being sick and tired. ..... and in pain!!!
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