Pain
Chronic pain! Chronic pain exists for millions of reasons and changes lives in thousands of ways. Having been involved in healthcare research for many years talking to people who live each day with chronic pain we have realised that one of the really big issues is being able to explain what it is like to family and friends.
Chronic pain can come from a wide range of different medical conditions including multiple sclerosis, diabetes and arthritis. You may find some of our previous blogs on chronic pain and pain management of interest. Please have a look at them here at https://patienttalk.org/?tag=pain-management.
People with chronic pain describe their struggles in many different ways. “My family think I’m lazy because I can’t move” and “I cry when no one else can see”. Many hate the side effects of the medications such as drowsiness. Countless people with chronic pain never seem to get a decent night`s sleep which limits what they can achieve each day. For many being understood by others is a daily struggle!
The aim of this blog is to provide a space for our readers to share their experiences of trying to explain life with chronic pain to their families and friends.. Anything you wish to share with fellow readers would be of immense value. However you may wish to consider some of the following questions:
- What is the primary medical condition behind your chronic pain?
- What are your main symptoms of chronic pain? How long have you been suffering from chronic pain?
- How did friends and loved ones initially react to your pain?
- How did you try to explain life with chronic pain to them?
- Do you feel today they understand you and your life with pain?
- If you had to give one piece of advice for somebody who has just started their chronic pain journey what would it be?
Please feel free to use the comments box below to add anything you feel maybe of interest to our readers. This could include links to your blogs or web sites which have helped you in the past.
Many thanks in advance.
I have degenerated disc desease and glaucoma I being loosing my sigh I use cannibiss to help with the pain,and right know I would like to know where can I get the a card for medical cannibiss?who can help?
You know your body & yourself better than anyone else. If you feel like you’re not being understood by someone try talking to someone else who’ll listen.
I feel very blessed that my aches and pains are so very minor compaired to others.
I have had 2 neck surgeries due to herniated discs. I had my first neck iburgery in December 2005 and my second neck surgery in April 2008. I also have a bulging disc in my neck, cervical spinal stenosis & arthritis in my neck.
I’ve also had 2 back surgeries on my lower back due to spinal stenosis. I had my first back surgery in January 2011 and my second back surgery July of this year. I also have some bulging discs along with lumbar spinal stenosis.
My doctor that has done my neck & back surgeries told me I would never be 100%.
I have my good days & my bad days. It’s really hard to explain to someone who doesn’t understand why I am in pain. When I do try to explain the response is well maybe you should try this or maybe you should try that. I’ve been told well you’ve had surgery, you shouldn’t be in pain. I’ve also been told you’re way too young to be having all these problems.
I do have a few family members that understand the daily struggles I go through every day. It helps me to know that they do understand & get me.
Hi,
I got diag. With MS in 2008 and in 2010 with epilepsy. I live with chronic pain every day. My pain is ever changing but primarily lately has been my legs, knees, hip & upper Botox area. I also have a lot of issues with comprehension. I had to leave my really good awesome job that I have strived for my whole life untill all this happened.
At first the hardest thing for me was handling other people who didn’t understand or care too. I wanted & needed everyone to know that this was not the “way” i am….referring to my past ability to, how I felt concur everything being a super hard worker. I just didn’t want anyone to think that I wasn’t what I have worked for so long to be. Does that make sense?
I wanna right more… I just can’t thought. It kills my hands
I made the decision to inform my co-workers and family about my MS diagnosis because I wanted them to understand why they would see the changes in me as they happened. I told them that if they see me laying on the floor to not call 911 but simply help me up, if they see me walking and staggering I did not go and have drinks at lunch, that is normal now and if I should forget a word or two when I am talking to them to please help me remember it and if I should forget their name please don’t take it personal because those are the issues I am facing right now.
My husband started pulling away the minute that my hearing started to go… a number of friends did the same… but a wonderful few were there for me more than I can ever imagine. Up until recently, I never talked about my condition, explaining very obvious episodes as a nerve condition and asking tbat people ignore it. I just started really opening up about my condition a year and a half ago. The family of friends that surrounds me now admit thatthey don’t truly understand what I go through, but accommodate and consider my needs even more than I do. It is weird, but sitting in a chair isn’t so bad whenthe right person is pushing.
So far I’ve been diagnosed with Trigeminal Neuralgia, Meniers Disease, peripheral Neuropathy, and Fibromyalgia… but they suspect I have MS (doc called it a pre-MS condition… can’t afford the tests to confirm). I have pain that ranges from a slow dull ache that seems to penetrate the bone to sharp lightening-like pains. Good days consist of aches that I can smile past and the ability to walk unassisted. Bad days might as well be spent in bed as I feel as though someone is ripping the connective tissueoff of my legs
What is the primary medical condition behind your chronic pain? Fibromyalgia, Migraines, MS, Bilateral Trigeminal Neuralgia.
What are your main symptoms of chronic pain? How long have you been suffering from chronic pain? Nerve pain (burning, stabbing, lightening shocks, intense prickling), Migraines to the point of extreme disability that results in hiding in a dark room for hours. Persistant body aches like having a constant severe flu. Joint pain that makes it hard to move. 9 years, with some of the others being 4-5 years. It’s be a slow progression.
How did friends and loved ones initially react to your pain? Cheered me on to still move and act normally – thinking they were doing good by telling me that it was like a bad cold, get dressed and get moving and you’ll be fine sort of thing. That was followed by frustration when reasons/solutions for the pain didn’t come out. It took a while for acceptance to come and frankly that was a good part due to the fact that I stopped apologizing and moved on myself. There remains some frustration, but hey, I get frustrated too.
How did you try to explain life with chronic pain to them? I started using the flu analogy, then as more pain came on just continued to discuss things that would crop up. Some days are pretty bad and it’s particularly hard for my kids to understand, but we muddle along.
Do you feel today they understand you and your life with pain? Yes. They do get how hard it is. There still is that annoyance with my limitations and crabbiness, but that’s a matter of being human. For the most part things are great.
If you had to give one piece of advice for somebody who has just started their chronic pain journey what would it be? Things will take time to come together for you. You need to take the time to grieve, and so do the people around you. Foremost, realize that this isn’t something you chose so you bear no shame in it – do not apologize for it. Work on feelings of guilt. Please, seek therapy to help you through this process if you need to. Stand up for yourself using a firm but not angry or victim sort of way…simply, this is the way it is, you’re not asking for it, doing what you can about it and lets move on and find ways to cope. Weed out people who are a drain on you – you’ll need all that energy to sustain you through this. Know that this journey, while taxing and extremely difficult, does not mean you’ll remain sad, frustrated and miserable…you can find a peice of contentment with it, and a balance that you can live with. Find something each day to wake up for – not something that you feel like you have to do it (like you need to catch up on the housework) but something that will feed your soul (getting to go to lunch with a friend, reading a good book that you’re excited about, having an awesome soak in your tub).
Michelle_Virdee The greatest thing I heard you say was that you stopped apologizing for your pain. I carry so much guilt and shame for my chronic pain. I cannot work and contribute to the finances. I cannot spend time with my family like I used to. I find myself apologizing all of the time. I can see that when I discover that chronic pain is not my fault I will be able to move on in my cycle of grieving. Thank you for that.
jenzspot – Another thing a great friend taught me – the difference between guilt and shame. Guilt is what you feel when you do something wrong. It’s a good emotion in that it helps spur us to not make the same error – for example, saying something mean that hurts someone’s feelings. Shame is a different beast – it’s the feeling you get when you didn’t do something wrong and/or don’t have control of it. Shame doesn’t change any behaviour…it simply makes you feel bad. It’s a useless emotion and does not belong in your life. When you get these feelings start identifying if it’s shame or if it’s guilt. If it’s guilt, change stuff. If it’s shame, work on throwing it out. You don’t need that on top of everything else. 🙂
No one ever asks. Only one friend who has MS asked if I had ever had a day pain free. I remember one hour pain free.
In 1992 , I was diagnosed with MS. In 1994 I developed mid back pain that would come and go with exacerbations. My pain became more constant and in 2002, I developed foot pain that felt like stepping on hit coals. At its worse, I was unable to bear any weight and had to use a.wheelchair. I went to see a pain doctor which helped but to this day , I still have the same back, neck and foot pain. Most people say that I don’t look like I’m in pain, which cuts like a knife!! I’ve tried to explain it to my family countless times and frankly I sick of it!! Just because I can move around and manage to do some things other people can do doesn’t mean u don’t have pain! I even have to explain it to my own adult kids over and over and they still can’t imagine someone having pain every day of my life!!! I’m just tired of explaining it to people so when someone asks me how I am, I say ” I’m fine”.
I have MS since 2009. Arm, neck, back, foot and leg pain. Some understand a little most will say something stupid like oh that happens to me all the time. One even said I had cats and now I have a disease from cats in my brain. Are u kiddingme????
I have fibromyalgia, degenerative arthritis of the spine, Interstitial Cystitis , have had 3 neck surgeries, 2nd surgery ws bavk to back, dr first went in through the front, he couldnt get to everything , so the next night, had gone in through the back of my neck, that was nearly 3 years ago, and still have lots of pain from it , started having the same pain, numbness , tingling feelings , going down my left arm , had a mri done , have the same thing going on again , but , the dr said , absolutely no surgery….unless it gets way…way worse….so , I have to live with this , everyday is so hard for me , and lately , I have so much fatigue , anxiety, cant sleep , having trouble staying asleep, just sometimes lately, I feel everything is getting the best of me…and a lot of times, I feel , my husband really doesnt understand….like Im just doing this on purpose…..so , I dont have my husbands support , which makes it even harder for me….any suggestions , to help him understand , would be helpful…
MaryDyer The only thing I can suggest is try to get him to look it up on google and read about it…I he won’t do that or does look it up and still doesn’ change, I don’t what else to say..
Hi
It is surely difficult
to describe anything that cannot be seen, and unfortunately humans have a
tendency to trust most what we can see and validate. However we know that persons
living with pain have a need to get their life with pain acknowledged and
validated by their friends and loved ones, and indeed also by their healthcare
professionals.
It is somehow a problem that we all have experienced pain and most of us got over it, so based of that,
so must the pain for anyone else. We need to explain that chronic pain is not
just acute pain taking longer time it is “something different”.
I do not have
persistent pain. I am a primary care physician and pain researcher. Just a few
days ago I published a book with the title “The Empowered Pain Patient – How
Validated Pain Management Can Work for You”, where I describe methods to be
empowered as a person living with pain by knowledge and validation. Recent
studies have taught us, that feeling alone in it self can lead to increased
pain, to mood problems and to increased tiredness. And not being understood is adding
to feeling lonely. In my book I describe the different roles for persons in
contact with somebody with chronic pain and for the person themself.
I describe this and of
course my book at my blog “Picture of Pain”.
Thanks.
Kim Kristiansen
No one every asks about my pain, except another friend with MS who asked me had I ever had a day without pain. I thought about it, and remembered I had had about 30 minutes without hurting, but by the time I actually realized it, my pain was back. I would describe it as never having time without pain.