Hello everybody, I'm an osteopath and I'm doing a bit of research about people in pain. I'd really like to know what are your main frustrations about being in pain. If your pain could be resolved overnight how would this impact your life?
Any information or thoughts would be gladly welcome. Many thanks.
Would transform my life. I could move about properly, go for a walk. Sleep without going ooh ahh every time I move.
sleep a full night without waking up with pain
drive a car again not done it since 2013
walking hurts and going upstairs is like going up mt everest
sitting in a chair without getting up after a short time due to pain
taking so many drugs i wonder what's its doing to my brain and body
pain in fingers and hands with go numb and tingling after doing little tasks like texting,writing, typing on pc,
waking up every day knowing its going to be the same as all the others after the drugs have worn off and the pain is back full on
My body was shutting down. And thanks to many alternative practitioners I got back on my feet again. I worked hard to become self employed (started sitting in my chair at my sewing machine for 5 mins at a time, built that up, introduced using the foot pedal, sewing, cutting out on floor with a pilates tummy to protect the spine. Took me 6 months to get up to 50 minutes at a time, and that's where I stayed to give me a 10 min break every hour)
Frustration
For me pain drains energy
There's a lack of spontenaiety as everything has to be planned, and family has to live like it too
Not being able to join in with many things, although it's handy if I don't want to join in ☺
Others not understanding why although I look ok, I'm so unable to do some simple things
Employers being totally inflexible and unsupportive with jobs that could be suitable
Government not recognising how much pain affects day to day life, no benefits available for those between totally fit and totally unfit
Fear of making myself permanently worse
Lack of understanding and knowledge from medical staff ( only time I consult gp about pain is if there are new symptoms or a relapse where I need pain kilkers - only had 2 lots of 8 weeks of painkillers in 14 years)
Lack of painkillers that work
Alternative therapies are not free on NHS or prescribable (they support mental health which makes pain easier to live with)
Resolved
I can't remember what it's like not being in pain (14 YEARS) I can remember the worse pain of childbirth though.
I would continue with my strategies as they are good for everyone not just those in pain (distraction, creativity, meditation, stretching, walking, alternative therapies)
I no longer have to keep myself as pain less as possible, both my daughters are at uni, so there is less pressure to be as fit as possible to meet their needs.
I would live life again. My life just now is either or
I wouldn't need to make choices like
Do I do a bit of gardening or do I go out for a meal tonight
Do I hoover or do I get the shopping
I need to drive tomorrow so I shouldn't do anything today or the day after
If I woke up with no pain one day, I think I would continue with a slower pace of life, and I would fit in some of my strategies, but the freedom to do anything without planning or choosing one activity over another is something those in the nonpain world take for granted.
Pain has given me many gifts. I discovered my creativity, which I might not have had time for in my previous life. I understand my body down to cellular level. Insight into a whole section of society who despite their efforts are getting left behind, are mainly unheard and their needs not met in the work place. Problemsolving skills have been maxed out. We've paid for lovely house alterations ourself - changed bathroom to shower room, utility and toilet downstairs, built a studio in the garden for my work.
I can't give back my daughter's childhood and I was very mindful of how much I asked them to do to help around the house, mainly keeping their rooms clean and tidy, washing up and hoovering.
The main frustration about pain for me is its ability to change your emotional outlook on life through secondary suffering; anger, frustration, depression,fear, hopelessness etc. It wasn't until I went through a free Mindfulness course with the NHS that I realised just what a huge effect these emotions have on my level of pain.
You asked what effect getting rid of pain would have, well these monsters would shrink back to normal size!
You will be inundated with replies I think. Chronic pain has just about completely altered the life I had and expected to have. The frustrations are losing the person I used to be and being so limited in the activities I can do that it often seems pointless to be living at all. Dependency causes huge frustration as does limited physical mobility. Sex is impossible. That's a huge frustration literally.
I wouldn't dare think about how my life could change if my pain was resolved overnight. I would fly just fly to join the rest of the world, to work ,to feel useful to feel free of the vicious animal Pain that wears away at my self worth and self esteem.
You probably wanting something more precise I guess.
Dee
proper nights sleep
Not having to carefully choose which thing I want to do at the weekend as more than one (or sometime even one) will put me in agony for days
Walking at normal speed
Not having to plan additional journey times to allow for pain breaks
Not having to be mildly fogged on painkillers constantly
Being able to go to the shops after work
Being able to travel without getting there, crying at the pain and then laying down for the rest of the day, dosed up to the eyeballs again
Having a normal 30 something year old's life where I can spend time with friends when I want rather than when pain allows and also a full marriage (my husband is caring and understanding, but it must be frustrating for him as well)
Being able to go swimming without days of agony afterwards
Not spending a fortune on heatpads, TENs pads, creams, gels, and anytjing that comes out that may possibly give just a small amount of relief.
Being able to go karting or go to a amusement park and having a choice of rides i can go on without extreme pain
Having energy
Not being terrified when I reach a flight of stairs, as I know what pain they will cause
Playing with my nephews that are too big now to fling about as it hurts to even think about that, or having a kick-about
Not feeling frustrated and depressed that I'm constantly limited
Not constantly worried that my career may be affected if I am unable to travel for an audit, or have a couple back to back that I wouldn't manage, or too many docs appointments and other things that need a couple hopurs here or there that builds up.
Sorry, don't mean to make you regret asking that question, out-pouring ensues.
I think you owe us an explanation as to why you want this information. I would have thought that the questions you ask are intrinsic to your training. Frankly, I have geared myself up to not looking back, not brooding over what I cant do, wishing and hoping etc, so lightly asking these questions of this community, demands a little more thought.
Am thankful that my pain has all gone now, hope you are all feeling better. But I find that during the winter I feel worse with loneliness. A long story as to how this is and why it is not possible to change it.
Sorry, I really don't like support message boards being used for research purposes - even if it does seem relevant. There are more ethical ways to do your research.
Thank you all so much for taking the time to reply in such detail. It is immensely helpful and I am very grateful.
I am doing this because as a health professional it is very important to me that what I am doing meets the needs of my patients. We all do our job from day to day but do we really know how life is for the person in front of us? Often, I think, not. Asking questions helps me to learn and do the best for my patients.
Thank you for your help.
I have to say that it blows my mind away! I think it is absolutely wonderful that you are looking for understanding and growth for yourself and your patients. That is no small detail and is extremely crucial, I highly respect that of you!
Andrea
The pain and anguish revealed in the replies you have had will, I hope, help you and I for one would like to know what you have learned from this and how it will affect your practice.
It has been very helpful and I am very grateful. It has reinforced to me the need to listen very carefully and not to make assumptions. About anyone.
To save re typing, my problems have all been listed by the other 9 replies, the one thing I will add is it's a postcode lottery on the type or quality of health care you get for chronic pain.
Hi Clairelis, thank you for asking us to comment because it is a difficult one to answer, for there are so many questions that come to mind; But the main one that get's me is normally (on a good day) adapt my weight as I walk, as the outsides of my feet are basically gone, so I tend to try to walk with as much weight on the inside of my feet .
Now' that may not sound a bit confusing and difficult to answer, but I mention it because I am always gobsmacked by the variation of my body on a day to day basis, and over a 30 year period I am still not certain of what's best.
But one question is what bothers me is does the bone deteriorate more if you don't use it, as I'm getting sharp pains right in the middle of my shin bone always in the one spot, but it is when I am resting that it comes most, I know about muscles problems, but I'm getting pains inside my bones on my arms as well, is there a good medicine to keep bones strong, or is to keep using them the best medicine. can you put too much strain on your bones ? and the worst pains I get, is when I am using my keyboard, in my vertebrae between shoulders and my neck, also I am at a complete loss as to know what to do, as the pain is just as bad, when sitting as it is with walking.
thank you best Alex
Hello Alex
It's difficult to give you a truly meaningful reply when I don't know you but in general, yes, you are right it is good to keep moving. Don't worry about doing further damage by walking a little. This is very unlikely. When you are at rest and in pain try gentle movements like ankle circles, pointing and flexing toes etc to keep things moving. The body likes movement. It keeps blood flowing and lubricates joints. You may find glucosamine helpful for keeping joints healthy. Best of luck.
Thank you it's exactly what I think, but I should have made it plain it's regarding my neck ,head and facial issues that are getting markedly worse and it's only sitting still, till the pain subsides, or so bad that it's lying down for a while is the only thing that works, or breathing and filling my lungs helps by pushing vertebrae away from nerves.
Sorry for not including that, it's just that it's seemed to went from a strange feeling when lying down to an impossible pain that has moved to the opposite side of my neck as well, and the only thing I've done is to keep moving and on my feet, and it's got to the point that when I put weight on my foot and leg it triggers so much pain at the top of my head and neck to be unbearable and that is with enough painkillers to kill a horse, and even doing this post is now very painfull for my neck and hands, or if I've been sitting too long then my hands get useless , so it's complicated, but I've been using the pain as a way to try to manage movements, but luckily I have an appointment with pain clinic, and hopefully I will get specifics from them.
Pain is a great teacher, but sometimes you have to give in as you've had enough and no amount movement works, or at least without taking more and more pain meds just to get the circulation moving and to keep muscles working, So a balance is hard to manage due to the pain , but thanks again best Alex
Hi,
I can't agree more with the replies so far. This has completely changed my life. It is so difficult when you appear to look ok but inside your are just shattered. You basically become only an existence, the pain and limitations dictate your life. Family and friends are hurt and not always understanding. Being newly married my husband and I are fighting to keep our marriage afloat. It doesn't just effect things here and there. It's like being paralyzed, I would not wish this on anyone! It's not a hobby you have to give up nor a different career path. It is all taken from you! It is a battle every moment, even with diagnosis and treatment. Try not sleeping and going about your normal day for a week... I have not slept in months! I use to be one who loved sleep, I had a full time job, worked my way up the corporate ladder for 10 years. Was liked and trusted by those around me. But now even the respect from others is gone. And work!? How does the government expect a human to work in this condition what about all the medications your on?! Just to take the edge off of the constant pain that follows you around like your own shadow. You learn also that the victims of pain and suffering are never protected. Good luck living in Florida and trying to get treatment for pain! I have never been on so much medication in my life, nor experienced depression loss of the will to keep going. Dr today are very closed minded they don't listen and they only provide a bandaid for what never cures the actuall source of the problem but covers it up. I've been in physical therapy, pain mgmt, chiropractor care, I just began seeing an OMT Dr. And he finally has shed some light into this never ending dark hole. That my experience was not abnormal and my injury was never corrected therefore it's as bad as it is for a reason. Dr look at these tests MRI X-rays scans and if they don't see anything wrong they think everything is fine. They don't think of the body being in motion and the causes of pain. You might as well take a picture of a car that looks great new paint job new rims A/C.. You then get in to drive it and it doesn't start?! Same thing with the body! Though I have finally felt relief from OMT the pain returns and intensifies he said it's because your body being injured for such a long time wants to go back to that way so he's slowly teaching my body. Just like a baby learns how to crawl and walk. Oh my!! If I was cured if it was gone! I could be me!! I could enjoy my marriage my family my friends! I could eat and sleep, read a book without hurting! I would work! I'm a workaholic I'd have purpose again. It's simple for those who don't understand or think they do and that people in this predicament are still capable of living normal daily lives. Think of not having arms or legs suddenly and being asked to swim.... The pain and suffering the sadness the depression the fatigue, the limitations on everything like being stuck in a cage where you can see things but you can't experience nor touch. Is that a life you'd want to continue? It's maddening!
Andrea
Thank you so much Andrea. Your eloquent description gives me a good insight into what you must go through on a day to day basis. your pain is unique and only you truly know how it is but thank you for helping me understand a little of it. It sounds like you are under the care of a good doctor now. I hope Your situation improves soon. Best wishes, Claire
the fact the nhs specialist love to pass you onto another dept so far its been 4 my guessing the next one will be the hospital mortuary too say i'm dead no treatment from anybody at all very ludicrous the way one's been treated by the so called NHS i can see why its free and broken
What has helped you with managing your pain?
Your opinion on Pain Questionnaires
pain in the top right leg on the femur 
