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. Craig57

    Craig57 New Member

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    Growing up mom always told me never hurt your back. Being tough & kind of dumb I ruptured two disks doing something that really needed two men. It really sucked for the first 5 or 6 years. Now some days are better than others. No back surgery as way back then it was a dicey outcome. I found a really good chiropractor.
    Had cancer surgery 2.5 years ago, I'd rather just have the back pain than go thru that again.
    Since then I feel every day is a blessing! Live your life to the fullest!
    Camp often!!
     
  2. turtle

    turtle New Member

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    They've come a long way with back surgery. I did a lot of research into the procedure I had as well as the DR. I talked to people he did surgery on. I just couldn't suck it up anymore. It was drastically affecting every aspect of my life, my job and most important my camping. It's day one after surgery and I'm already pleased even with a cut in my back.
     
  3. ILUVTHEBEACH

    ILUVTHEBEACH Suburbs of Philly, PA

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    turtle, do you mind if I ask what type of surgery you just had? I have my 9th appt with my pain specialist since the beginning of Sept. I have had one injection or another and he is telling me I should probably have a surgery consult.

    Like other, my pain was a gradual thing. I have had always had back issues from an early age. I had a spinal tap when I was 8. To this day, I am really not sure why but there is nothing I can do about it now. I have a herniated disc at L5-S1 and the some arthritis on those vertabrae as well. I no longer sleep more than 2 hours at a time and since January the pain has not left my back so I am going on a year without being pain free for a day. The only time I am pain free is if I start taking lots of drugs but then I cannot function anymore and that totally sucks. And the pain is only gone as long as the drugs don't wear off. It has affected every aspect of my life. Today I was so desparate for relief that I called a specialist in Philly who does disc replacements to set up an appointment. I had to fax over my MRI results so I am waiting to hear back from the to see if I can get an appointment for a consultation.
     
  4. reachinghigher4u

    reachinghigher4u die hard tenter reborn to a pup

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    CP is a huge struggle for me. I am always pushing myself to do more and end up paying later on. Worst is when you are in the middle of setting up camp and *WHAM* you step or move the wrong way and throw your back out. I feel so incredibly helpless just sitting there while everyone else is getting things done or cooking.

    I had a micro-discectomy L5-S1 9/2008 and was told recently that I will need another back surgery for herniations in L3 & L4...but I refuse to give up my camping! This year we are buying a PUP (put deposit down and inspecting tomorrow)..prior years it was tents with double high air mattress.

    One step at a time...go slow and take it easy
     
  5. jshulenberger

    jshulenberger New Member

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    I have some lower back pain, but do very well. My wife struggled with a diagnosis of "Fibromyalgia" for ten years. I will share our story.

    She had all of the pressure points of Fibromyalgia. She would lay there at night in pain. I would gently rub her legs until she fell asleep. It would take her a while to get moving in the mornings. A masuse could feel lumps in her legs, and feared that she was riddled with Cancer. She was not. A guy in a retirement community where my mother lives offered to help the residents with similar trouble by prescribing powerfull drugs, and a food program. We took the premise of the food program, and went on our own. We changed absolutely everything about her diet. She only ate steamed rice, and fresh raw fruits and vegetables with no sauces. By day three the pain was almost gone, and the inflammation in the legs subsided! We introduced different foods back in, and ended up finding out that it was wheat! Similar to Celiac syndrome. Although she's not hyper sensitive. Now ten years later, she can get away with small amounts in dressings, etc., but we avoid breads, and pasta's made with wheat. We told the "doctor" what we found, and he said "I don't know anything about that". We made him change the records to say she was misdiagnosed.

    She is now running, and planning to run her third half marathon (13.1 miles) in about a month.
    If it helps one person out there, than it's worth it! Happy camping everyone.
     
  6. ILUVTHEBEACH

    ILUVTHEBEACH Suburbs of Philly, PA

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    I recently have been seeing a top spine surgeon in Philadelphia for my condition. It turns out my L5-S1 disc is dried up and almost non existant and it generates pain and my L4-L5 disc has a tear in it and also generates pain. I currently have 3 options - 1. Live with the pain, 2. a 2 level fusion or 3. a one level fusion with a 1 level disc replacement. I would love to go with option 3 but my insurance company won't cover it. Right now I am currently living with the pain but feel I must make a decision sooner rather than later. The other day it was so bad I had to have my husband tie my sneakers. [:!]
     
  7. turtle

    turtle New Member

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    I had a lamonectomy which is basically cutting the disk from pinching the nerve. I know a couple of people who have had fusions with good results also.
     
  8. flakeyspam

    flakeyspam New Member

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    I had a 4 disc fusion and found out later that you are more likely to have failed back syndrome with more than 2 discs being involved. 2 years later I now cannot sit more than 10 minutes and can not walk without a cane or walker and now my last mri at the va hospital shows bulging discs in my upper spine and narrowing in the area of the fusion. I had to laugh sorry about not being able to tie your shoes I have been wearing slip on shoes for 4 years now so I can relate to that. I wish you luck I had no other option than to have the surgery as I could no longer walk at all. What happens so often that the fusion goes well but you have nerve damage from the nerves being pinched pre surgery. I am seeing a awesome pain mangement doctor at the veterans hospital and they have made sure I have everything I need to make life a little easier in fact I was never treated so well with my private doc who was paid well by at&t. Good luck and do lots of research so you will know what to expect and what can happen
     
  9. mindyspopup

    mindyspopup New Member

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    I feel your pain( well my own) as well. I hate hurting everyday, hate the druggie feeling even worse. Its very hard to find a balance of in between. I am blessed though to have a doctor who actually feels my pain as well or at least her own at a young age and realizes I dont want to be drugged up. I wanna function with less/ more tolerable pain. I saw a post where someones mom said watch your back. I was a dummy and didn't listen either.
     
  10. tracker366

    tracker366 New Member

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    Turtle hope you feel better soon..I had three steroid epidural last fall for bulging dics at L5 and L6 it only lasted 1.5 months now tomorrow the 22nd I go in for nerve block injections.I can only be on my feet for 2-3 hours before it gets about a 9 on the pain scale,we talked about lumbar spinal fusion but we are trying avoid it if possible.Please keep me informed on your progress..Good luck on your recovery
     
  11. ILUVTHEBEACH

    ILUVTHEBEACH Suburbs of Philly, PA

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    I saw a chiropractor last week who thought he could help me relieve my pain and get me back to 80-85% of my former self WITHOUT any type of surgery. I am going to see him tonight to go over the treatment plan and of course the cost since my insurance company won't pay for anything. Not sure if any of you have looked into it but it is called spinal decompression. He said that he has worked with people who are a lot worse than me and are now walking around straight and pain free. I will let you know how it turns out.
     
  12. cowchaser

    cowchaser New Member

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    I realize this is an old thread, but just wanted to add my 2 cents. I have had chronic pain for the last year. It started as stomach pain and ended up taking out my gall bladder. Worst mistake of my life. Since the surgery I have not been able to work or anything. I have developed depression and agoraphobia. The agoraphobia is why we bought the pup mostly. Gives me a reason to get out of the house and try to get past it. I don't drive because of the pain meds and I have been on them so long I am what they call legally addicted. I have been trying to find a doctor to get me off the pain meds and on something else. I went to the Mayo clinic and all they could do was tell me to go see a pain management doctor. Still don't help me get off the opoids I am on.

    It is hard for people to understand what you go through. My pain is controlled with what I am on mostly, but my job won't let me return until I get off pain meds. People see me do things and ask if I am so sick how I can do that. They don't understand while I am on pain pills I can do it, but will usually pay for it later in the evening or next day. I get sick of being looked at like a nobody or a druggie. I went from a 100,000 dollar a year job to barely surviving. Not something I would have done on my own. I would gladly give away everything I own and go back to paycheck to paycheck lifestyle just to be normal again. Anyway that is some of my story.
     
  13. fmbhappycamper

    fmbhappycamper PuP Power

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    YES my neighbor and BFF is in pain daily and I can see it in her face, if she makes it up her stairs she stays, she has been on/off more meds than is normal. She's a Mom of Teenage Girls and they complain that she isn't there for them, its really hard. [2C]
     
  14. Cindy F

    Cindy F New Member

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    If you are suffering from chronic pain of any type and have not tried Elavil yet, please speak with your medical provider about trying it. I have had quite a few chronic pain patients that say it's a miracle drug. Yes, I have seen it work wonders, much more so than any other medication.

    I don't know anything about this site other than people review their experiences with different medications. http://www.drugs.com/comments/amitriptyline/for-pain.html

    While I'm sure it isn't right for everyone and probably is not effective for everyone, I personally have never seen it fail. It's worth asking about anyway.

    Good luck to you all and you're in my prayers.
     
  15. ILUVTHEBEACH

    ILUVTHEBEACH Suburbs of Philly, PA

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    Hey Everyone, I wanted to give you an update to my status. I have been seeing a great chiropractor who is working with me now and I have to say I have a lot more painfree days now than I have had in a long time.

    Back in April he put me on the DRX 9000 table and we have been on this for a while. Right now I am off the table and he is adjusting my back 2xs a week. I also see his partner for Active Release Therapy and it has been working wonders on my stiff hips and lower back.

    I am almost able to bend over pain free. I still can't life heavy objects yet, but sometimes that works in my favor. [}:)] I have a few more months of treatment but I think I will get there and I will make this journey without having to have surgery! I have been camping quite a few times this summer and the experience has been better than last year where I suffered all year.

    Here is a short video of DRX 9000 system.

    DRX 9000

    Good luck to everyone who is seeking relief from chronic pain.
     
  16. Mooseplus

    Mooseplus New Member

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    Yeah, i am with you all. When they run out on names or too many names to remeber what you have, they shortenn it to Poly-arthritis and fibromyalgia, Served the country 20 years in the military and another 20 years as a public servant.
    just can do it anymore and battling the insurance and doctors to be declared disabled which is a battle in itself.
     
  17. RotnMom

    RotnMom Am I there yet?

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    Moose...even worse, when they have all the names in place, all the symptoms, all the side effects, multiple surgeries, doctor's notes, all of it..and they still tell you THEY think there is some sort of "work" I should be able to do. Yes, I got my DENIED letter today for SS Disability. [V] [:(] [:!] As it would happen, as I was reading it a commercial came on for Kalfus & Nackman. I took the # and called them..they accepted my case!! Saved me from having to 'shop around'. They all get 25% and SSD pays them directly, so no headache there.

    I've avoided pain management and sucked it up for 7 years for 2 main reasons: my dad's side of the family is a very "addictive", and he raised us to not ask for help.

    Now here's a silver cloud we 'invented' as DH and I were talking about all of this on the phone (he's in FL with his dad, who has stage 4? dementia). When you apply, the gov't folks pull whatever info they want and then find pretty words to say 'go to hell' in a form letter. Actually, they weren't even that pretty.

    Anyway, when you decide to fight it, and you have to fight it, right?, they send you more paperwork...THAT YOUR ACTUAL DOCTOR GETS TO FILL OUT. To me, I think that will be a 180% turn around. NOW is his time to use his medical words PLUS his actual recommendation of what he thinks I'm capable of. The original case is decided on what they pull from the records departments. I understand if you think that's "one in the same", but really, it's not. SSD asks for certain data and that's ALL they get. I've had to deal with these records people and they are NOT the sharpest knives in the drawer. Point being, that extra 'backing information' the doctor will provide should be the push they can't deny.

    That's what I'm trying to keep in the front of my mind anyway. :) I wish all of you a better tomorrow.

    [:D]
     
  18. Orchid

    Orchid Sharp Shootin' Grandma

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    I got denied the first time I applied also. It was back in 1997 and as soon as I appealed they sent me for a knee x-ray. When I got there, they said they would only pay for x-ray on one knee and I had to pick which one. A couple of weeks later, I got an approval letter. Strange because my knees were only a part of my medical problems.

    The original "doctor" they had sent me to had an office in the basement of her house. All she did was ask me to sit on the exam table, then had me get down and back up about three times and pronounced me healthy. Of course there was a stool that I was on by the exam table so it was just a matter of sitting down and standing back up. Stupid.

    I'm in the final stages of pre-surgery testing for the first of a few surgeries that will hopefully enable me to work again. Right now I can't even sit at a desk for more than 20 minutes at a time. Chronic pain is a terrible thing to live with and not being able to control one's income is very life altering. Instead of just being in pain, I am now broke and in pain.

    Anyway, I'm not sure how the social security system works, it just seems to make no sense at all. Good luck to you and don't give up! It sucks big time to not be able to work, I get really depressed about it, but at least have some income (even if we haven't gotten a cost of living raise in two years!!!)
     
  19. RotnMom

    RotnMom Am I there yet?

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    Yeah, I knew the first attempt is normally a denial. I actually have met two folks here who got it the first time! But I wouldn't want their ailments as a trade off. :(

    They never asked me to go anywhere yet, but I expect that might happen. That person won't stand a chance against my main doc, if it gets to that. He's taken particular care in who he sends me to for what, all in house doctors. (We use the hospital for everything as their clinic is better than any I've seen in a long while)

    I have my physical Dec 9th (or 12th...can't remember right now) and we will be speaking at length about all this. Well, unless we cover it all when I take the paperwork to him this week.

    I'm trying to keep my hopes in check because anything can happen, but the raw fact is, I'll never be able to have a 'real job' again. The metal in my neck, and soon my back, seems to scream 'liability' to these people. And with such high unemployment around here, I'm not exactly an 'attractive applicant'. In a smallish town like this, nepotism runs deep, as does discrimination. And yeah, going from the 'go to' gal who trains everyone to being unemployed AND unable to even contribute to the household (money and housework), it really does make a person feel useless & unimportant. Add DH's job drama and his own stress with that and his dad (4th stage Dementia & in FL) and it's not a pretty picture. It just sucks.

    BUT....like I said, trying to keep hopes in check and get my Rottie boy healed up. It's about all I can do right now. Oh, and ENJOY this portal!! I have a laptop stand so I can sit or stand and still read and type. That helps a LOT and I get to hang with like minded folks. It's a great PLUS for my attitude. [A]

    [:D]
     
  20. Orchid

    Orchid Sharp Shootin' Grandma

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    I won't ever be able to go back out in the regular work force, but I can work from home as a transcriptionist like I was doing before. I'm still have contracts that I can claim work from any time. Unfortunately, it uses my knees to work the pedal. Once I get one good one, I should be able to do that again.

    It does sound like you have a lot of stress going on! Hopefully, you will get your disability through soon. With having a regular doctor and all, I am surprised you are not already approved. When I applied, I had not been to a doctor (other than pregnancies) in probably 20 years. I guess that's why they sent me to some appointments.
     

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