Chronic Pain Support Group
Physicians and professionalsdefine pain as chronic if it lasts longer than three to six months and is persistent. It's distinct from acute pain that is a direct result of injury or trauma. This support group is dedicated to those suffering from chronic pain. Discuss treatments that have worked for you, find advice for your specific experience, and find support. You're not...
I'm awake, having a hard night and I was trying to remember back to when I didn't have CP. It's been over 15 years since the 2nd bout of RSD which has stayed with me (an earlier case actually went into remission for a few years) and before that I was in an accident and injured my back. THAT got better after a great Physical Therapist and Chiropractor.
But I realized that I began having pain in my late teens with the accident. I had some years of non-pain after that, then I broke my foot. Since then it's been off/on until 15-16 years ago. I honestly forget what it was like to have a normal life. Pain is something I always said wouldn't rule my life. Lately, in addition to the RSD in my foot I have upper and lower back pain and knee pain. I don't know why I'm getting worse and it's NOT RSD pain in my back or right knee. It's just pain and I can deal with it. But I wonder, why should I have to?
I've had CP long enough to know that you can live with it. I DO live with it. I just wonder, is there a future without it?
How long have you had CP? Do you see an end in sight? How do you deal with it? I know I'm not the only one who wonders just how long I'm to be afflicted with this. I'm not feeling sorry for myself, really. I just wonder how there can be pain like this and no cure. I'm now 43 years old and I try so hard to have a good attitude. I only complain when it's really bad, and even then I try not to complain too much.
Is there an end in sight? Do I just keep taking it one day at a time? How do you deal?
But I realized that I began having pain in my late teens with the accident. I had some years of non-pain after that, then I broke my foot. Since then it's been off/on until 15-16 years ago. I honestly forget what it was like to have a normal life. Pain is something I always said wouldn't rule my life. Lately, in addition to the RSD in my foot I have upper and lower back pain and knee pain. I don't know why I'm getting worse and it's NOT RSD pain in my back or right knee. It's just pain and I can deal with it. But I wonder, why should I have to?
I've had CP long enough to know that you can live with it. I DO live with it. I just wonder, is there a future without it?
How long have you had CP? Do you see an end in sight? How do you deal with it? I know I'm not the only one who wonders just how long I'm to be afflicted with this. I'm not feeling sorry for myself, really. I just wonder how there can be pain like this and no cure. I'm now 43 years old and I try so hard to have a good attitude. I only complain when it's really bad, and even then I try not to complain too much.
Is there an end in sight? Do I just keep taking it one day at a time? How do you deal?
I don't know if there is an end in sight or not. Probably not, if I was realistic. I don't think it is a matter of "dealing" with CP. I think the ultimate goal is to just "LIVE LIFE" no matter the issues any of us face.
I was a teenager the first time my back "went out". I was hospitalized in traction and IV pain meds. My back went out several times a year for the next 15 years.
I would be bed ridden, doped up and just have to wait until my back decided to "heal". A few times, an ambulance had to be called but, in general...it was just a waiting game. Usually, it was a week or so.
A few years ago... my back went out for over a month. It was at that time that I never really healed up. I started feeling like I had been in a car accident all the time--that "whole body" aches/sore thing.My back went out a few more times.
In 2010, while visiting my daughter at the hospital, my back went out again. That was it. I left my job in June of 2011 and applied for Social Security. I was awarded SSD in April of this year.
I am 38, fully disabled. I have no social life and no more high heels in my closet! I use a walker or mobility scooter 24/7. I have an almost 17 & 18 year old.
In the end...as much as I have to be negative about, I'm not. I definately have low days and, I am thankful for anti-depressants and DS!
Will I get better?? Probably not. I'm probably going to be fully wheel chair bound in the next few years.
I "deal" each moment of each day. I find as much joy as I can in the days. I try and be a positive person because, regardless of my issues, there is a lot to be happy about in life. It is soooo much easier to just swim in a cesspool of negativity but, I refuse.
In support!
No cure for the damage done from a lifetime of poison due to doctor incompetence.
In 2004, when I was 12, I was made to participate in a gym-class game of soccer. I somehow got the ball under my foot and tripped over it, hyperextending the joints in my feet. It's caused pretty constant pain since then, particularly because my RA decided that it wanted to attack that joint particularly ferociously. The RA set in for its major attack in January 2007. I was 14 years old. Since then, I can say quite certainly that I've had less than 24 hours pain-free, cumulatively, and those hours are only due to high levels of painkillers given in the ER.
I'm only 20 years old, and I've been in pain for the majority of my life. For me, there's no end in sight. There's always the possibility of remission, but I'm not very hopeful for that anymore. I'm lucky to have a great boyfriend right now who is acting as my caregiver, and is making my life with CP much easier, but to be honest, I still don't know how I manage to make it through the bad days.
Knowing what I've read about RSD, I expect the pain to be with me forever. But with the right pain meds a some PT, it may get more maneagle in the future. That's what keeps me going- knowing that someday the pain might end.
I think taking it day to day is the right idea. Tomorrow may be better after all!
Sandy
I think it is really inspirational to hear all of these stories and know that, regardless of the outcome and all of the pain and suffering we've been through, we're still all just trying to get on with life and are here to offer one another support.
Everyday, I just keep hoping there's an end in sight! Or, at least, a more-manageable end to chronic pain.It is unfortunate that so many experience this and that the body has so many little weird ways in which something can go slightly off and off-set other things.
I have had chronic pain since 2005, when I first started to experience strange leg sensations in my hamstrings (burning and antzyness) in high school. I was able to manage for a time, but then it got to the point in 2008 where I had to drop all of my activities (Irish dancing, tennis, etc.) and walking became difficult. I was really scared as I was 18 and didn't know what was going on with me.
Then, for the next few years, I went from doctor to doctor looking for some answers while completing university. It was a rough battle for me, mentally and emotionally, but with an amazing support system and kind professors I was able to complete my degree.
I am fortunate that I appear to be improving at the moment. I don't know how long the good streak will last, or if my pain will come back--as it has many times in the past--but I am trying to live in the moment and cherish it.
Family and friends and the DS forum help me deal with CP immensely, so I am so thankful and happy to be a part of the community here! Thank you all for sharing your stories!
Pardon my language.
Mine will never ease, it'll just keep getting worse, more than likely within the next year I'll be in a chair and nursing home.
I brought a lot of this on myself by refusing to have my hip replaced sooner....it never dawned on me the increased damage I was doing to my
spine with that negligence.
Most days I go from hour to hour, sometimes less, occassionly more..
it's just what it is "chronic" pain that's not going to improve.
I'm probably the world's biggest "bullhead" and have yet to accept my reality.....that's just me though, I know so many have succeeded in that and are living good lives in spite of.
I hope for you that there will be and "end" but if not, that you will have dr.s that will provide enough support so you can still have a good quality of life.
Before that the pain was ruling my life a good deal of the time... my mobility was restricted because the further I walked the more it hurt and standing still for more than a few minutes was inviting dreadful pain levels... plus I would regularly go into periods of flare-up, for no apparent reason, that would last for months and have me suffering constant high level pain.
I accept that I will have my pain condition for life... there is no cure. However what I am blessed to have is adequate relief, because in Australia we don't have the same opioid phobia in the medical community that other cp sufferers come up against. We also don't have the same level of drug abuse as other countries have... neither for illegal drugs or prescription drug abuse.
So because of that my doctors where happy to keep trying me with different med doses and combinations, and with various potentiators, until they hit on the one combination that keeps the pain quite well controlled for most of the time.
Just last week the state I live in announced a major new program worth multi-millions of dollars to provide better care for chronic pain sufferers. It will provide a major boost in funding for the several biggest hospitals that already have specialist pain facilities operating plus they announced that 5 brand new facilities will open in hospitals outside of the biggest cities, to give access to specialist pain doctors for people living in rural areas.
Plus a brand new early intervention program run through workers compensation, for people who are injured at work, to give intensive treatment aimed at preventing their acute pain from becoming chronic pain.
It makes me really sad that this government here can see what a wise investment this is in a rapidly aging population, while I have friends in the US who have serious pain conditions like Lupus, RA and DDD, yet who can't get anything much stronger than an aspirin for their pain, because they live in a state like Florida where all the pain specialists have stopped prescribing opiates. It just makes me so darn mad, because I know that it's so unnecessary.
If you are one of the people here who is currently struggling with your pain being out of control, please don't give up hope. Yes we may have to accept that we can't be cured, but even if there isn't a med available right now that will lower your pain level, it doesn't mean that a new drug is not right now being tested that will be the one that works well for you.
Or that the next doctor that you see will not decide to try you on the combination of meds that is the right cocktail for you. I am a great believer in the way different meds can work in combination to provide better relief than a single med can at a higher dose. My pain doctors have proven that for me... it's a pity not all pain specialists are so progressive!
Sending gentle hugs, warm smiles and positive thoughts to all who are suffering too much right now. May you find relief around the very next corner.
Take care... Gaye... xxx