Chronic Pain VoxPop.
Welcome to the first in an occasional series of blogs that look at the real lives of people with various different medical conditions and allows them to tell their stories in their own words. The aim of this series is to allow us; and you, our readers, to explore what real people actually think. As you may know PatientTalk.Org runs a series of groups and pages on Facebook and other social media. For this VoxPop blog we asked our communities the simple question “What are the biggest challenges of living with chronic pain?”. This gives an opportunity for our members to share their thoughts and opinions on the subject. The VoxPop goes beyond just sharing our communities’ view. Our hope is that the readers of this blog will, in turn, contribute their views and comment on other peoples’ opinions.
The results (of this VoxPop) are fascinating. Here are twelve of the most typical and also the most interesting comments from our readers:-
- “Feeling useless. As I was never of the go. . Feel as if my family don’t understand it all. The pain that we are all in and feel as if no one believes you.”
- “Being conceived as a liar or an addict.”
- “Convincing people I am actually in pain!! a family member said that she’d love to earn money suppose to be in pain but able to post pictures on facebook!”
- “Being in pain non stop an having to clean my house and laundry some days it’s hard to get out of bed!! I have family members saying your always saying your sick!! Just one day o would love for the people that say that stuff an see how they handle non stop pain an having to be a wife and a mom of 2 teenage boys!:'(“
- “Not being able to make long term plans. Stopped joining things that I enjoy,as having to cancel at the last min. has become all too frequent.”
- “Unpredictability of how you feel day to day…pain meds that make you even more tired…neuro-typical family and friends having no idea what you are living with moment to moment…not wanting to complain”
- “Coming to terms with the fact that I will never feel like I used to before I started having symptoms & my diagnosis. Hard to fully comprehend that the pain, fatigue, & multiple other symptoms will be apart of daily life forever.”
- “The biggest challenge for me is that it has totally changed my lifestyle, and the dark way that makes me not able to be counted on is a challenge I hate the most. It has isolated a used to be extremely social person.”
- “Living in the 21st century but yet there is so little awareness (known) about Ankylosing Spondylitis…something is very frustrating about this and the lack of medical coverage to pay for us yo be guinea pigs!”
- “The pain changes – it goes from burning to shooting, to painful spasms. And all those types of pain are invisible so nobody could understand how it is to deal with them. Medication barely helps and I hate to take high doses so try to cope with as little meds as I can, also heating pads and ice. Tired of ever-changing pain, it almost never goes away, just changes.”
- “my husband agrees with you…says the fatigue is the worst. Says the pain zaps all his energy causing overwhelming fatigue.”
- “Everything! I’ve seen myself change from a bright young woman with loads of potential and hope for the future, into a bitter middle-aged woman who feels useless and worthless with little to no hope at all.”
As I said these are typical of the responses we received. But how true are they for you?
Please share you views on these quotes using the comments box below. What other areas should be covered? Again please share below!
Thanks very much in advance!
For me, the biggest problem is just not being able to plan ahead. I can wish for, and hope that that and that day, i can do this and that, but planning a vecation or planning on simple normal things like groceary shopping, is hard.. Whenever im asked to go somewhere with some one i never promise, i cant.. cuz i never know if i will even be able to walk, or be ok enough to even have ppl around me. pain allso exhausts me a lot so having ppl around me tomuch tends to irritate me, prob sounds strange, i could think about the fact that they wouldent be there to irritate if they didnt want to spend time with me, but on the other hand, less ppl, less irritability, makes for a better time spent together.
So future.. I guess thats the hardest, i never know how tomorrow will be, or how much my body will be able to handle today…
_Nika_
I totally agree with all the sentiments expressed by the other sufferers. I am a 49 year old man, who has battled with chronic pain, fatigue and other symptoms for most of my life. I always tried to carry on and not let it hamper my life too much, even though it was always there. I used to have 4 jobs to keep my self busy,
I was not finally diagnosed, until 2010, thanks to private medical insurance paid for by one of the companies I worked for. However this was then used against me and ended up having to leave that job because of ill health. Since then things have spiraled downwards and I have had to give all my jobs up due to my worsening ill health.
I have had to finally surcomb to the fact and accept, that my conditions are having a greater impact on my life and how much I am able to cope with at a time..
I hate not being able to support myself and people thinking that I am a scrounger. I hate all the medication that I have to take even though it only takes off the edge of the pain. I have had to fight tooth and nail for what little I now get, but I am my own worst enemy and usually play down how much help that I actually need. My family do not understand/want to understand, so I have very little contact with them. All my friends/ colleagues have gone the same way.
I have to thank my local hospital’s Pain Management Team, for listening and through the Pain Management Programme giving us tools to act as coping mechanisms, even though that can be very hard sometimes. They need all the help that people can muster to get more funding to run more courses as there are so many people out there that could benefit from attending the Pain Management Programme. I tried to start a local support group following the programme. I have met a few people, who I am now in contact with and friends and we try to help each other. It has been very hard to get and keep the momentum going and getting other people from the Pain Management Programme to join us to support each other.
I can empathise with all those comments. The things which I find hard to cope with are that my friends do not seem to realise that I am not going to get better and I get the impression that some think I am not trying.
I am also really scared about the future. I am 67, live alone, no family – I do not want to end up giving up my autonomy to live in aged care.
I know how you feel. For over a year I suffered pain that cut me in half just under my breast bone. I had MRI’s, CT scans, xrays, etc. They just kept giving me pain meds and muscle relaxers because they could find nothing wrong. I had caught a patient as they were falling and the pain began right after it happened. I had to go to the doctor the workers comp. people told me to go to. Then, one day I couldn’t move from the waist down and the pain was horrible. My husband took me to the ER and the doctor gave me a pain shot and wanted to send me home. Luckily, my personal doctor stepped in and admitted me. There were no hospitals to send me to for a week. A visiting neurologist examined me and had me transported to the hospital where he worked 60 miles away. There he took an xray of my neck and found 2 severely herniated discs. They had been looking in the wrong place. It was almost in my head – just a little lower.
What I’m trying to say is, just because you don’t know where your pain is coming from doesn’t mean you don’t have it. Many things can cause pain. You just have to keep trying to find it. There are pain specialists that can help. You don’t say whether your pain is all over or just in a specific area. If it is all over, then you might be better off with an internist. If it is in a specific area, then find a different neurologist that will listen to you and look in different areas for the cause of your pain. Hope you can find some relief. Hurting all the time is for the birds!
I never know if I will get sleep or just hurt all night, my family doesn’t understand. It is a battle to cook or wash clothes.I am always tired and hurting and yet because I don’t act out and try to perserve my dignity others perceive me as drug seeking iI hate taking all the pills, I hate not playing with my kids as much.I feel very isolated and aloneost of the. Time and my nuerologist acts like it is in my head.
TessyTurner It’s hard when your life changes in a few seconds. I was an RN and was just transferring a patient. The other person droped him and I caught him, preventing a fall. Instant pain, but it took them a year to find out it was my neck, not my back. By then, I was paralyzed waist down. When the went to repair it, I developed pulmonary embolisms, DVT’s down both legs, and pheumonia. Then, just when I started walking again, we were hit from behind and it herniated the disc between the 2 fused discs. Because of all the complications from the 1st surgery, they cannot repair it. I live with constant neck pain radiating down my arm. And because of the clots in my lungs and legs, I get very short of breath just walking from one end of my home to the other. If I stand, my feet swell and my back hurts. It has taken away my career, any social life I had, my ability to garden or, now, cook dinner or clean house. If it weren’t for social sited on my computer, I would go crazy. Now my husband is being attacked with arthritis and has several surgeries to replace joints ahead of him. We live on TV dinners and pre-cooked foods. We no longer go any place or do much. We hired a housekeeper a couple of times a month and a friend’s son mowes the grass. Everything else just stays untouched. This is not how I planned to spend our retirement years. My husband is too young to retire, but in too much pain to work. I just can’t work. We don’t go much of anywhere except for grocery shopping (thank heaven for electric shopping carts).
I know other people envy us not having to work. But I would much rather not have to hurt.
Hard to explain the amount of medications and Dr visits doesn’t “cure the pain” only helps take edges off. I really miss the feeling of being able to go on Holiday but why? I only have to take my illness and pain with me so it’s spending money I don’t have to see a different scenery. Very depressing.
All are true. I was at the highest point in my life when I was struck doe. With chronic pain and other medical conditions. I was bright, worked May way up was running a law office with another woman and bam. My whole life changed. I was a hypochondriac and “just wanted sympathy”. Oh the internal struggle and physical is overwhelming. I am now isolated except from family that can deal with it. Day to day is different and plans have to be changed, etc. I no longer socialize because people just don’t believe you even if you have diagnosed medical issues. They say that you just can’t be in that much pain EVERY day. Depressed.
catlady4847
No one knows what pain is until they suffer it, and how debilitating it is. Your whole life changes.
I agree with all of the quotes posted above. I find it very difficult to manage with the chronic pain, and I do the best I can, taking it one day at a time. After working 40 hours a week, I find it difficult to take on additional activities after my work hours.
Its knowing your limitations. Learning to do things slower, but not allowing yourself to give up trying. Do a bit, rest then do a bit more. You feel useless and isolated.
As a person who has chronic pain since the age of 7 or 8 (I’ll b 44 tomorrow) it has been a continual uphill battle. The future never looks brighter as age makes it worse. Fighting depression and worthless feelings is a daily battle as well. Trying to accept the fact that because of a careless driver I have to suffer my whole life – never gets easier. Being disabled makes me feel less than, but the fact that the medical community and the government treat me like a criminal because I need pain meds is the biggest slap in the face yet.
Oh yes the pain medications and the look you get if god forbid you end up in an emergency room and have to tell them what medications you take. They immediately imply you are an addict. I have needed to go to an ER desperately many times an have refused medical care at doctors who are new because they will just write you off as a drug addict. I think out of all of it that is the worst part if having a life if chronic pain.