Chronic Pain. Maybe this will help you understand what its like

Discussion in 'Camping for the Medically/Physically Challenged' started by jim1999, May 12, 2010.

  1. jim1999

    jim1999 New Member

    Messages:
    1,645
    Likes Received:
    2
    Joined:
    Jul 8, 2008
    Location:
    East Central Illinois
    People who do not suffer from some form of Chronic Pain had a difficult time truly understanding what it is like. Even if they live with someone who has it, this is one of those things that until you walk a mile in their shoes you don't and can't truly appreciate what a CP person goes through every day.

    People with CP live every day of their lives in pain. If you have ever had surgery, broken a bone, severely twisted a joint, had a truly bad headache, etc then you know what pain is. Now imagine feeling that way every single day of your life. Then imagine how you would feel if you spend more time in doctor's offices than doctors do trying to find a cause and treatment plan, but having doctor's refuse to give you any medications for your pain because they have don't understand or think you are a drug seeker or have a misguided fear of you becoming addicted. Also between hitting all of these brick walls and the pain itself many CP paitents not only have the pain to fight but depression as well.

    Even when you finally find a doctor who will take your pain seriously and will do things to improve your quality of life it is not a cure. The pain is still there day in and day out. The treatments and medications only push it into the background, at best making it like an annoying neighbor that just won't leave you alone waiting for his moment to torment you again in full. Then on top of that the treatments also come with a host of side effects that we have to deal with.

    Those of us with CP learn various coping mechanisms. We learn how to "suck it up" and "block" the pain mentally but that takes huge amounts of energy which can not be sustained indefinitely and as soon as we lower our defenses the pain rushes back in and often overwhelms. Like everyone else we have good days and bad days. Our good days are often like a "normal" person's bad days, but compared to where we go for our bad days it is a welcome relief.

    The vast majority of people I know with CP do not want to be babied or pitied. What we want is to be treated as people and not looked down upon like we are attention hounds, druggies, or simply lazy. CP is a hidden and varying disability, and like most people with some kind of disability we just want a little compassion and some understanding.
     
  2. Racebear

    Racebear New Member

    Messages:
    108
    Likes Received:
    0
    Joined:
    Mar 12, 2010
    I hear ya Jim. I go through it every day too. Nothing like a doctor telling you to learn to deal with the pain for the rest of your life. It takes some getting use to, but we learn to deal with it as best we can.
     
  3. FC

    FC Central Florida

    Messages:
    786
    Likes Received:
    2
    Joined:
    Apr 2, 2007
    Location:
    Apopka, Fl
    Im with ya. I deal with it every day.
     
  4. flakeyspam

    flakeyspam New Member

    Messages:
    245
    Likes Received:
    3
    Joined:
    Jan 23, 2009
    I have been blessed by doctors who understand my pain is real and are hendered by my getting sick from most of the medications that would manage it after a seven hour back surgery I could not even tolerate the morphine. I am able to tolerate very low doses of hydrocodone and even that is starting to make me sick. I can feel for anyone who is ignored by doctors I feel lucky that my pain can be seen on mri and cat scans (if you can call that luck) I have been told this is the best they can do but now AI am approved for a special program at our local va hospital and have some hope that they can help.
     
  5. Hetzgog

    Hetzgog New Member

    Messages:
    42
    Likes Received:
    0
    Joined:
    Feb 23, 2010
    Thanks for posting this. I have a father in law that has had the spinal fusion procedure done twice and I think he is worse off now than he was before. Even though he was in pain before, it did not seem this bad and intolerable.

    His surgeries were about 7-8 years ago. He is not the same man that I met before that... he used to NEVER be still and was always looking for something to do to help others. Now, he just sits around the house eating, watching TV and sleeping. When the family comes over for Birthdays, he does not come over or leaves after about 30 minutes.

    It has been difficult for me to watch him go down hill after all these years. The doctors have him rotating on the most powerful opiates out there - he has been on methadone quite a while now. He sweats all the time from the meds, nods off in mid-sentence or worse like when he is cleaning up. I can't help but wonder how much the addiction to the meds (you can not argue that he is not addicted after all these years) is holding him back?
     
  6. JulesCamper

    JulesCamper Indianapolis, IN

    Messages:
    423
    Likes Received:
    2
    Joined:
    Aug 12, 2008
    Location:
    Indianapolis, IN
    I am so thankful that i don't have this but I work in Radiation Oncology and see the pain that these patients have to live with. My heart goes out to all those with chronic pain
     
  7. pixel

    pixel Campers: Nature's way of feeding mosquitoes. Unkn.

    Messages:
    447
    Likes Received:
    1
    Joined:
    May 4, 2008
    Location:
    Massachusetts
    I have Fibromyalgia and have been told by many professionals that my pain is all in my head and that I need a hobby.

    Chronic Pain is terrible. It is agony and I completely understand.

    Good luck!

    Pixel
     
  8. snoopytrooper

    snoopytrooper New Member

    Messages:
    126
    Likes Received:
    0
    Joined:
    Jun 3, 2009
    Location:
    Washington Kansas
    Chronic Pain sucks ............................. I have it every min every hr of every day . life with Ankylosing spondylitis makes the pain fun NOT .
     
  9. turtle

    turtle New Member

    Messages:
    564
    Likes Received:
    4
    Joined:
    Feb 14, 2007
    My back pain is not the same from minute to minute which causes people to misunderstand my pain. I can go from being completely mobile to almost incapicated in less than a second. Sometimes I can somewhat hide my pain for an entire weekend. I hear the talk sometimes but just go on knowing that when I can I do everything and when I can't I just tell them I can't. No excuses just the facts..
     
  10. Gambit...

    Gambit... New Member

    Messages:
    257
    Likes Received:
    0
    Joined:
    Jul 5, 2007
    You have my understanding. I have psoriatic arthritis. I have run the gauntlet from Methotrexate to Remicade to Humera with Prednizone and Darvocet for all! (sort of my anthem.)

    So far, I have three de-coupled toes on my right foot and have my right index finger locked as I try to type this. (My saw bones is going to "shoot the joint" on the finger this next wednesday. Whatever that is. I was warned it would be painful (from a man who would tell a person in front of a tidal wave they were about to experience moisture) so, I will be chocked full to the gills on Codeine when I bounce in there.) :)

    Two of the treatments I have been on come with a video and a book telling me all about the horrible ways the drugs can kill me and then I must sign a consent form before I go on them. I did not hesitate to sign or take the treatments. (Humera is a self medication shot every two weeks. The kit COMES with a small ice pack to numb the area before you perform the injection. It is like injecting liquid fire.)

    THIS is how great the pain is people. I will chance death and inject fire just to escape the agony for a time.


    When I feel up for it I fish, camp, canoe and enjoy life.

    Kim
     
  11. Hetzgog

    Hetzgog New Member

    Messages:
    42
    Likes Received:
    0
    Joined:
    Feb 23, 2010
    Kim, I understand your agony. I work with a lady whose husband went thru the same exact thing. He took Humera for a number of years and thank the Lord is currently in remission.

    Do you happen to have psoriasis? If so, how bad? I've battled it for over 15 years and it is really bad this year. I don't have any signs of arthritis, but fear getting to the point you are at as I know it comes with the territory.

    Good luck with the treatments!
     
  12. Gambit...

    Gambit... New Member

    Messages:
    257
    Likes Received:
    0
    Joined:
    Jul 5, 2007
    Yes, I have it.

    I have patches here and there. I have topicals to deal with it but, nothing will make it go %100 away.

    The Humera almost had everything under perfect control and I was even bicycling to work! Then my platelets dropped like a stone and my immune system went into overdrive. No more Humera for me darn it!

    The stuff I am on now makes it so I can work and function but not to the level Humera did. (Mobic and Immuran)

    Kim
     
  13. Sharon

    Sharon Dover, FL

    Messages:
    1,748
    Likes Received:
    2
    Joined:
    Oct 28, 2008
    Location:
    Dover,FL
    WOW, people that understand what others with chronic pain go through. How wonderful.

    I to live with daily chronic pain. On a daily basis I deal with CFIDS, Fibromyalgia, Pseudo Tumor Cerbri with a shunt, Chronic migraines on top of that, Asthma on 2 inhalers a day, Degenerative Disc disease, Osteoarthritis and bipolar to boot. Along with 15 other medical problems.

    My hubby didnt understand how much pain I was in or how sick I was untill the Disability Judge told him, I have never seen any one her age with so many problems. Then he understood. But still not fully.

    I have a wonderful doctor that understands and helps me. But its not a cure, just management.

    So I do totally understand and feel for you all that also deal with chronic pain, and never know what your day will be like untill you wake up and then deal with the constant changing medical situations that arise.

    Hope you all are still able to enjoy camping, its work for, but I do enjoy it as much as possible and pay for it the next week. but its worth it.

    Sharon
     
  14. edmonton_camper

    edmonton_camper Loving it.

    Messages:
    77
    Likes Received:
    0
    Joined:
    Aug 9, 2009
    Location:
    Edmonton
    Ditto. I also have Psoriatic Arthritis and Psoriasis.
    I started off with Naproxin... then went to Methotrexate... then Enbrel... Haven't tried humera yet but have heard/read good things about Celebrex.

    I can go from having days where I am almost perfectly normal (almost) to times when I had to take a month off work because I couldn't bend my knees and slept 16 hours a day.

    I dread it when one of my hands gets a flare up because I know it will move its way across that side of my body and then when that pain is gone, My other side will start.

    As for psoriasis itself, I have several patches this year but last summer I almost completely cleared up.
    Hoping for the same thing this summer. Taking lots of vitamin D and getting as much sun as I can.
    The topicals don't seem to work to well for me.

    Bruce.

    Oh, and the "shoot the joint" means he will inject Cortisone directly into the joint. It will make the problem vanish for awhile but does long term damage (as do most of these treatments) so go for it.
     
  15. Hamilton

    Hamilton New Member

    Messages:
    31
    Likes Received:
    0
    Joined:
    Oct 25, 2007
    Well said Jim et al,
    I too have had chronic pain for the past twenty nine years due to five spinal surgeries, and now failed back surgery symptom.
    I try and live each day as if it were my last. Get up and do something ,anything.
    I practice waht I have called "Distraction Therapy" since 1994 and just recently read that some big shot Phd, says he 'Invented' this new approach to chronic pain WTH?
     
  16. Tombstonebilly

    Tombstonebilly New Member

    Messages:
    7
    Likes Received:
    0
    Joined:
    Oct 24, 2010
    [:(] Medical marijuana is what helps me, when I go to see my sister in New Mexico [A] with six crushed vertebrate in my neck [:(] In FL.I have to be a sneak about it but it sure is better than all those pills [;)]
     
  17. real lite virgin

    real lite virgin Rob,Suzanne & Jessie - Black Lab

    Messages:
    773
    Likes Received:
    0
    Joined:
    Apr 15, 2010
    I can relate to all the stories as I as well suffer with chronic pain, [:(]I was in a car accident in 1997 no broken bones but my left shoulder was hurt from the seat belt.Went thru months of pain with doctors not finding the source and then I was getting nerve blocks done at a hospital by a anethesiologist (hope I spelt that correctly) he mentioned RSD Reflex sympathetic distraphy well that's what I had.I was sent to a pain clinic in Toronto and then they located (a year later) healing rib fractures they asked if I had been in another accident and I had not. [:(]
    For a while I was feeling two types of pain and I thought I was going crazy because no one believed me (neck and shoulder from the accident but also pain in the chest area from the rib fractures) so I have nerve damage and I have switched medications for years but now I am on a medicine used by people withdrawing from cocaine etc. It helps with the pain a little but I have less side effects on it then other meds, but like someone else pointed out we don't like to be babied or be treated like we are druggies we try and do as much as we can without asking for help. :)
    Suzanne
     
  18. PattieAM

    PattieAM New Member

    Messages:
    915
    Likes Received:
    0
    Joined:
    Dec 13, 2007
    I'll add to this tale of woe...I have rheumatoid arthritis - diagnosed in 2004. Was on sulfasalazine and Indocin (for pain) for several years, but blood work showed irritation - was switched to another med which made me ill within 15 minutes, so got switched to Prednisone this past year and it has been a miracle drug, but, it's elevated my blood sugar into the 560 range, so am being weaned off it and onto Methotrexate. Up to 5 Methotrexate pills once a week and I believe they are working .... I will be a wiggy in 2011 as the side effect is hair loss! And I'm losing it.

    I have pain med so I can sleep and some days I can get by with Ibuprofen 800 mg, followed by tylenol a few hours later. My major issue is my feet - the rheumatoid nodules have moved bones, etc., pinching nerves, so there's major pain and/or burning - some days it's total agony to try to walk.
     
  19. real lite virgin

    real lite virgin Rob,Suzanne & Jessie - Black Lab

    Messages:
    773
    Likes Received:
    0
    Joined:
    Apr 15, 2010
    It certainly is amazing that with all our limitations and pain issue's we have all found two things that we have in common, camping in our Pup's (which give's us all alot of pleasure) and meeting other people who know exactly how we feel [CP]
    Suzanne
     
  20. turtle

    turtle New Member

    Messages:
    564
    Likes Received:
    4
    Joined:
    Feb 14, 2007
    After 10 years of back pain and worsening till last year I only got to camp 3 times I finally had back surgery.

    I'm now on day 1 after surgery and the DW says it's too soon for me to start getting ready for next season.

    OK, maybe too soon to do anything physical but told her it's never too soon to start thinking and planning camping.

    Do I hear any disagreements with that?
     

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.