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Untitled Comment
Karen Lee Richards
Friday, May 29, 2009 at 10:21 PMre: Untitled Comment
Minn/AZ gal
Saturday, May 30, 2009 at 05:11 PMHi Karen, Your comments were very helpful. I too am taking Tramadol and it helps make my pain tolerable. I may try acupuncture again along with the Tramadol to see if it helps. Our situations are very simular. My life is quite limited but at age 60 I do not need to be as active so I am OK where I am at present. Thanks again.
Hi AZ Gal and Karen
Happy Bill
Saturday, September 12, 2009 at 04:18 PMTramadol has worked for me for about two years, but now it seems to not being as helpful. I have now added acupuncuture. Started with 3 times a week for two weeks. Then once a week for 4 weeks. Sure does work for me. Please don't make a mistake of some I have heard of. They did not check the practisioner out, and found they were not even regestered with the State. It's worth doing some home work if you are going this route. Thanks for his site. First time user. Happy Bill - Seattle
re: Hi AZ Gal and Karen
AZ Gal
Wednesday, September 16, 2009 at 03:32 PMre: re: Hi AZ Gal and Karen
yeti105
Monday, September 28, 2009 at 11:45 AMsome insurance companies do pay for a certain number of tx's now, it is considered "real" now. i have had the luck of trying it, it did not work, but the lady i went to only charged me what my insurance would pay for not her normal rates. i tried my daughter who is 17 and has had chronic HA's for 3 yrs, they say she is "just depressed", it worked for her but the motivation to get her out of the house to go was too much along w/my own med issues. talk to people they may know an accupuncturist that will help with out draining you or may work w/your ins.
re: re: re: Hi AZ Gal and Karen
Debra
Monday, October 05, 2009 at 04:50 PMIt could be worth checking to see if your insurance covers chronic pain conditions. There are different rules that apply if the condition is long term. My insurance company has this policy but I had to do a little searching to find it out. The number of visits is not limited when you use this method. Especially if it has been referred by a physician or a chronic pain specialist.
re: re: Hi AZ Gal and Karen
Debra
Monday, October 05, 2009 at 04:46 PMYou can often receive discounted or free accupuncture at schools and colleges that teach it. The students do not start giving accupuncture to outside patients until they are further along in their studies and they are very well supervised by their instructors. I have done this and been very pleased with the treatments I have received. It is also possible to receive massage therapy this way. It is something worth checking into.
re: re: Untitled Comment
Anonymous
Wednesday, September 16, 2009 at 12:39 AMre: re: Untitled Comment
Not addicted
Monday, October 12, 2009 at 05:14 AMHi Karen - I too tried Tramadol but it made me very dizzy and neausous and I didn't like the way I felt. Besides, I still had the pain.So far after many different kinds of pain meds., the only one that helped me totally get rid of my pain is Oxycontin 80 mg.
I stopped that for reasons the entire world has been made aware of, but I did not get high from theis, just pain free. I might have to return to this very, very expensive med, just to keep my sanity and my quality of life.
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When to stop treatments
alifeinpain
Tuesday, June 09, 2009 at 02:57 AMHi- First of all, it's been 5yrs. for me and I'm sorry you've been dealing with this for so long. And then to go through cardiac arrest from a treatment, my heart goes out to you! I'm in a place now where I'm beginning to think that way. The surgeon still wants to try more surgery, but after 3 surgeries and several epidurals and other injections, the only difference I've experienced is an INCREASE in pain. So I'm already at the point where I'm asking myself "why keep opting for more surgeries/treatments other than medications for pain relief?" I understand that doctors just want to keep trying to see if they can eliminate the pain, but when nothing is helping, you start to lose hope. And then, of course, there's always the chance that you will be in worse shape after the next thing they try. I'm just not willing to take that chance at this point! The only way I am willing to go through another surgery/treatment would be in an emergency situation.
re: When to stop treatments
badbackytoo
Thursday, June 18, 2009 at 06:01 PMI am with you on this one for sure. after ops i had done, i would rather die or it would have to be an extreme emergency for me to undergo another one of those. and even then i would think twice. at aged 53 .6 i have had enough. i done shotss in the back, they seem to line the docs wallets more than they help me. in fact, the last one i had, i could not sleep for 3 weeks and had servere insomina from the depol medrol.
well honestly i would rather stay as i am now at lest i know what i got goin on. dont wantto make it worse either. so i stay with my junk pills and try to get along as best as i can, hell at 53 half, i am gonna coast. glad i was not 23 when i had this done to me. i gave it the fighting chance but after a while it is up to you to decide what you can take....good luck
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back pain
debra
Friday, June 12, 2009 at 11:40 AMI am 55. I wore a body braces from 12 to 15, had first back surgery at 15-put a stell rod in and did bone fusions to straighten my back. Wore a body cast til age 16. Age 18, husband slammed me into a wall and broke the steel rod in my back, wore another cast for about 6 months. Second surger y to remove it. Age 26 had third surgery to fix broken fusions-another softer cast was worn. Age 30 had 4th back surgery to fix fusions again, another soft cast. Age 54 had my fifth surgery to take out collapsed disks, put in metal cage and fake bone. I still have pain but not as bad as it was.
I don't know any other treatments but if you find one, please let me know. Good luck to you..
re: back pain
alifeinpain
Thursday, June 18, 2009 at 06:28 PMWow Debra! You've been through more than me! Although it seems we have a few things in common... I'm so glad to hear you're not in as much pain as before. It's sad that it started at such a young age for you. I'll be 53 in a few days, but before the accident 5yrs. ago, I was extremely active. Now, I'm extremely limited! But the thought of another surgery making me feel worse is way too scary. And as I'm sure we've all been told, there are no guarantees that that won't happen. Just trying to make the best of it with where I am right now. I hope you're in a safer living situation these days.
re: re: back pain
debra
Thursday, June 18, 2009 at 09:05 PMI went for my checkup on june 16. The x rays showed that the vertebrae, discs above the last surger are degenerating now. It is just moving up my spine. He said he could do another surgery to fix that but I would walk more crooked than I do already. I don't want anymore surgery. The pain is extremely bad when it rains for some reason. The arthritis I guess. I take celebrex and lyrica for that. I have a few pain pills left to take when it gets real bad.
re: re: re: back pain
alifeinpain
Friday, June 19, 2009 at 02:17 AMSo sorry to hear the bad news from the doctor. I saw my spine surgeon about 6-8 wks. ago and it seems I'm having the same problem at the site of my cervical spine fusion, both above and below. It hasn't even been 2yrs. since I had it done! I think they expect a follow-up surgery for that reason with most patients, but usually not until 8-10yrs. after surgery, so this seems way too soon to be having that problem for me.
The surgeon told me I could hold off on that surgery for a little while, but insists I need the lumbar surgery asap. I have 2 herniated and one extruded disc in that area. My pain level is high most of the time, and I can't take Lyrica (or any of the other off-label drugs being used to treat pain) and I've been on at least 5 different RX anti-inflamitory meds, and had bad side effects with all of them. I can take small amts. of ibuprofen to help with inflamation, along with other pain meds that help to make the pain somewhat manageable. And yes, this rain is brutal on people with chronic pain! I am very grateful that I have a great pain management doctor. He agrees with me about holding off on more surgery for now.
The thing I'm wondering about with your situation is that if the surgery would cause you to walk "more crooked", wouldn't that stress other areas of your spine, and in return, cause more disc problems somewhere else? Follow-up surgery is a tough call.
re: re: re: re: back pain
debra
Friday, June 19, 2009 at 10:41 AMThe last surgery was april 2008. I don't want a 6th surgery. Yes, each surgery seems to have caused the stress/pressure points to move up the higher levels. I have a double curve from scoliosis. I was fixed at age 15. My first husband unfixed me by smashing me into a wall and breaking the steel rod in my spine in half. So degeneration started and never stopped. Bunch of big words and widespread nerve damage that affects my left arm and leg causein numbness and pain. I used to go to pain mgt, pills and injections into my spine. They were going to put a thing in my back that would release signals to confuse the nerves so the pain would change to tingles but he couldn't get the needles and wires threaded thru because of all the fusions and scar tissue. I am also legally blind from macular degeneration. Just learning to live with it.
re: re: re: re: re: back pain
alifeinpain
Friday, June 19, 2009 at 06:27 PMMy sister (who is your age!) had the same surgery with a stell rod at the age of 19. I know at the time they used the Harrington rod. She started to have problems about 10 yrs. ago, but no surgery. Her scliosis was progressing rapidly, and there weren't too many doctors in this country at that time who did that surgery. Her's was done in NYC.
I have the same problems with pain on numbness on my right side, and now it's beginning to progress to the left side. I feel like a turtle on it's back in the morning when I try to get into a sitting position-lol! The pain is pretty bad when I wake up, and at this point it's in the entire spine from the neck down. I almost laughed when my surgeon said that if I wait too long all the nerve endings will be in pain permanently...I think we're already there! In fact, I've been there for a while, so I don't see this new surgery as something that would eliminate the pain. Dealing with the blindness on top of all the pain is a lot to deal with! I guess we just take life as it comes.
re: re: re: re: re: re: back pain
debra
Friday, June 19, 2009 at 09:21 PMYes, we just have to deal with it a day at a time. My pain is at it's worst at night and in the mornings. I have a hard time going to sleep. I am divorced. My son and i lost our house last year. I am living with my 92 year old mom in a very tiny house. She has some demntia ( she doesn't know it) and is very hard to deal with. Set in her ways, hates change, is a hoarder. The house is crammed full of clothes, bread ties, plastic containers and more crap on the floors and counters, stacked everywhere. I am going nuts. I can't drive anymore due to my eyes so I am trapped. Have a good weekend. I live in georgia and it is awful hot. She won't use the air conditioner either, lol. Good luck to you.
re: re: re: re: re: re: re: back pain
alifeinpain
Saturday, June 20, 2009 at 10:16 AMOMG Debra!! Georgia in the summer with no air conditioning!!! How are you surviving?! I live in NJ with a friend, or by now I'd be homeless. After 3 1/2 yrs., I just got a hearing date for disability. I don't drive much at all, and if I do it's only a very short distance. Living with a hoarder would make me a little crazy too! I lost my father this past year, but he had Alsheimer for years, so I understand what you're going through with that! I raised 3 children myself- I was divorced at 26. They're grown now and on their own. I don't know how I could have done this when they were small. Even working 2 jobs, we barely got by. My heart goes out to you! Do you have any other friends or family who can help out? I come from a large family but we are all spread out across the country. It would be nice to have a few around here! You have a good weekend too! Hope you aren't getting these thunder storms we have here- this weather is the pits!
re: re: re: re: re: re: re: re: back pain
debra
Saturday, June 20, 2009 at 05:11 PMyes we are getting hot as hell weather with lightning and thunder and rain every once in awhile too. those are bad pain days of course. gadebra at knology dot net is my email.
my mom complains to anyone who calls or comes by. tells them how lazy i am, how i am in her way and even makes up stuff sometimes. she is gtting weirder every day. this morning i got up and she had a shirt on the toilet seat so i pee peed in the tub. she has my bamboo tower that holds toilet paper in the hall now with stacks of her clothes too. I cleaned the counters the other day and she is still bitching and cmplaining to peple about that. Says I move d her coffeepot. I did, 2 inches back toward the wall instead of on the edge of the counter with plastic bags, ties and stuff all crammed behing it.
It is rare for anyone to come anymore because they don't want to listen to her whine. So I am stuck here for now.
take care
deb
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Chronic Pain
Fibro Gal in AZ
Tuesday, June 23, 2009 at 06:23 PMHi AZ/MINN gal. I live in Glendale, AZ and I have had chronic pain since July 2005. My pain has been attributed to non-Hodgkins lymphoma, fibromyalgia, degenerative disc disease and scoliosis. I went to a new pain management doctor today and I am getting very excited about a method of treatment that he would like me to try. I said, if it takes away 50% of the pain, it would improve my outlook on life 100%. The procedure is Spinal Cord Stimulation (SCS) therapy. The doctors are even doing a study about stimulation, but it will be implanted in the base of the head for pain due to fibromyalgia. Look this procedure up and see if you can find a pain management specialist who does this procedure. I was given a CD with patients' comments on the procedure. Of course every patient had something good to say, but, hey, it is worth a try. Anything to get me off all of these diffeent types of meds for pain. Hoping to your good health and getting pain-free, Sallyre: Chronic Pain
AZ/MINN gal
Saturday, July 04, 2009 at 11:33 PMHey, Good luck with the new treatment. I have just been reading a book on chronic pain and the doctor that wrote it doesn't think it is bad to be on strong pain meds if thats what works. He said there is a difference between dependence and addiction. If it is necessary that we have a dependence, as long as we are not abusing the meds and it lets us have a life, then there is nothing wrong with that. I have always felt that I should not take pain meds and I take as few as I can get away with. I guess I worry less about dependence now that I am sixty, than I did when I was younger.
re: Chronic Pain
Melinda Henderson
Tuesday, August 11, 2009 at 10:04 PMHi! I was reading all the comments about this horrific diease and when I read your information, I just had to know if you did it and did it work?? I have a dear friend who is miserable and I'm praying, and now looking into anything that may help her to get some kind of relief to be able to have some life! She's only 54 and it hurts me to see her this way and not being able to help her out. I would love to know if you have good news about the new treatment. Thanks so much! God bless! Melinda
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Bad Back also
Dave
Saturday, July 04, 2009 at 09:16 AMHello Everyone,
I also suffer from a blown disc and have had surgery to "repair" it. That was 9 years ago, since I also now have degenerative disc desease and my back has gotten worse as the pain and problems have now spead up my back. At my last MRI 2 years ago they told me that I now have 3 more bulging disc and more disc that were getting bad. I am 45 and have tried alot of diffrent pain meds, from pills to patches and many shots in my back over the years. I current and for the last 2 years have not taken anything for pain. I have however tried the "TENS UNIT" which does seem to help a bit. I hate taking pain meds, the addiction part and the not being able to work part, (I'm a machinist and cannot function with a clouded head at work.) So I continue to suffer from increasing worse pain, I do streatches to try to help, hot baths and sometime bang my head against the wall, it helps to avert the pain I guess. Rainy and cold days are very tough for me and have alot of pain on those days... Is their anything that will help us besides pain meds? Thanks Dave
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When to stop treatment and try something different
KathyB
Saturday, July 04, 2009 at 10:04 PMPain chronic,severe since 1996 cervical disk surgeries x 2, fibromyalgia severe since 2006. Tried EVERYTHING several times, different combinations with other drugs and alone. Now on Methadone and neurontin. Doctor says I'll never stop taking this drug and will always have this pain (from fibromyaligia). I told him I don't believe him. I want to get better & hope to God I will. You never stop hoping. (I'm 59 and retired from chronic neck pain; it made my hands/arms stop working for awhile; couldn't type anymore; had to quit.)
But I'm wondering about this methadone. I do not like taking it even though my pain level is down to 5-6 instead of 7-8 all the time. (Unless I do something strenuous to cause a flareup.) But I don't know what else there is. I'm gonna ask but I dread getting off of it and trying something else that may not work or may work but have dreadful side affects. YOU KNOW THE STORY.
so I've about decided that because I can now at least put on clothes and take showers 3-4 times a week instead of laying in bed all the time that I may better off to keep doing what I'm doing. BUT I HAVE WONDERED IF THERE IS SOMETHING ELSE------OUT THERE SOMEWHERE!!!!!!!!!!!!!
DOES ANYONE KNOW THE ANSWER TO THAT? I really think that when YOU find what works for YOU, just keep it up. AND NEVER GIVE UP MENTALLY. YA GOTTA KEEP HOPING.
LOWER ALABAMA HOT TAMALE CHARLIES DOWN HERE. HUMIDITY is insufferable. This is a good question and commentary. Thank you.
re: When to stop treatment and try something different
Anonymous
Thursday, August 20, 2009 at 05:11 PMI have also lived with back pain for 15 years now. I've had two lower back surgeries and one neck surgery. My neck is fine, but my lower and mid back pain have been chronic. I have tried all types of meds and hated the tiredness, etc from them. I went to a new pain doctor about a year and a half ago and love my new combination of drugs. Everything else they've tried has not worked (injections, chiropractic, etc). I am on a Fentynal patch with tramadol for break through pain. I am no longer tired and sleepy....so I can function to a much high level than before. Just thought I'd let you know. Take care.
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Untitled Comment
deutz
Monday, July 13, 2009 at 01:29 PM -
Pain killers
Born special
Monday, July 13, 2009 at 06:48 PMHi,
while I never had the severe reaction that you have, I have periferal neuropathy that gives me severe burning and electric shock feeling, sometimes literally taking my breath away, but I have bad reactions to all narcotics, the only things that seems to help, I have a baclofen pump, which every pain killer was tried, each one giving me seizures that put me in the hospital, the last one was oral percocet, made me convulse and fall out of my wheelchair, hitting my head on the floor and knocking myself out, they don't know how long I was there, but the paramedics said I was blue and they couldn't wake me up, on the way to the hospital I had another one, I don't know what the answer is, but I do think that the physical pain we feel is stronger than wanting to just give up
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Keep Going!
Mattsmon
Tuesday, July 21, 2009 at 03:18 PMPlease try not to despair. I KNOW how you feel, believe me. We all have our pain journeys and even with similarities, they are all very personally different.
Mine started 15 years ago with a rare tumor inside my spinal cord. Thank God it was benign, but that was my introduction to the never ending "fight or flight" hormones that are supposed to guard us, but spiral out of control. Once that happens, even if you are healed, the brain is still receiving messages that say your body is in dire straits. I won't bore you all with the details, but like all of you I have been through the ringer. I have had a morphine pump for 7 years and I was very fortunate to be able to have one. I have also been through all the shots, all the "new" and "better" treatments to no avail. I was doing pretty well (about a 5 on the pain scale and that's OK with me instead of being at 10+++++++++++) until a year ago in June. I had a four hour emergency surgery to remove 7 screws (one of which was sticking into soft tissue) and countless bone spurs that had grown in and around the screws, and on and on and on. The result of that surgery is nerve pain. If you have it, you know what I mean. If you do not, praise God, because it cannot be described using the English language!! I, too, take Lyrica (neurontin makes me ill) now and it seems to help. I only take one, as weight gain is a huge (no pun intended) side effect and the same goes for the antidepressant that I take. I have gained 40 pounds in the last 7 years from the drugs----I walk 2.5 miles a day, work out on my ski machine and do 20 minutes of back exercises (which keep me very flexible). I eat less than 1,000 calories a day and I cannot take off one ounce. I have tried Jenny Craig, L.A. Weight Loss Center, Weight Watchers (who accused me of cheating!) and NutriSystem, as well as a liquid diet, ALL to no avail. If my college buds saw me now they would pass right by!
My doctor's response to my request for some advice and/or help with the weight (I am 5'1") was, and I QUOTE, " I do NOT wish to discuss weight issues with you. When you develop diabetes, then we will talk about medications."
I can't stress enough that there is a HUGE DIFFERENCE between addiction and dependence. Am I addicted to my meds? A RESOUNDING NO. Am I dependent on my meds? YOU BET YOUR LIFE! If you were a diabetic or heart patient, would you take
those medicines daily? Of course you would. Chronic pain is a neurologic DISEASE.
Our wires are continually firing neurons all over the place. The person who wrote in about taking Methadone.......I took it years ago but it did not help me. If it helps YOU, then by golly, TAKE IT and do NOT feel guilty.......that only adds to your pain. Whoever wrote in about reading a book where the doctor said that it's OK for chronic pain patients to take larger doses of narcotic drugs-that doctor is not only correct, he is also extremely brave for making his feelings public. This country HAS the medications necessary to treat us, but the fear of someone becoming "addicted" has doctors running scared, fearing that their practice will be shut down and they will go to jail for prescribing what has proved effective for our pain population. EDUCATION IS THE KEY FOR OUR FUTURE. The AMA needs not only to address this problem, they need to FIX IT.
Having chronic pain is our cross to bear........do not quit until you find a treatment that works for YOU!
God Bless ALL of us!
Mattsmom
re: Keep Going!
Sandi
Saturday, September 19, 2009 at 10:15 AMHi. Read your post. Yes weight gain with the Lyrica. I went off it cause it no longer helped. Have lost a lot of weight. Weight loss has not helped the pain I have. I have had pain forever, but this pain I have is like a UTI burning in the urethea(spelling) and usually on a pain level of 0 10 it runs 100+. I am considering the pain pump but reading the side effects, I don't know now. Tried the stimulator it drove me nuts so they took it off and I had them take the rods out during my back fusion. He didn't want to but they did not need to be there to create more pain. I really don't think that any of the diets will help while your on those pills. I didn't overeat actually I eat more now and 30 to 40 lbs lighter, much more energy. If it still worked for me I would probably try to handle the weight. My doctors know weight bothers me but the pain was bad. My stupid neurologist asked me why it quit working. I was like DUH I should I know. One thing is with the lyrica you usually gain a certain amt of weight and then you don't gain anymore. Best of luck.
Sandi
re: Keep Going!
Anonymous
Tuesday, October 06, 2009 at 04:47 PMI have had pain for 44 yrs. I was as close to death as you can be after a terrible car accident. My back was fractured, my leg broken in half and my brain pulled out. I have had over 40 surgeries. Two back. The first one was very successful, the 2nd one not so much. I was older, 55 and he tried to straighten my scolisis. It brought me to my knees. They wanted to do another surgery and I said NO WAY. If it got worse I could not live. So I went on pain management. I didn't want to, but after a few years I thought maybe I can have some quality of life in my last years. Then I moved from Calif to Idaho. My family doctor helped me, but then moved. Now I can not find anyone to help. They treat me like I am an addict. I was on 4 hydrocodone 10/325 a day, then last April, because of the way they made me feel I cut it in half. I am 61 and in pain, I am not an addict!!!! Every since then I have been suffering again and my adrenals are off the chart. I am at a loss as to where I can find help. Idaho laws say the general practioner has to prescribe you meds. I want a doctor trained in this medicine. I just don't know what to do. Guess I will have to fly back to Calif. every 3 months.
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Dealing with Chronic Pain
Karen Simon
Friday, July 24, 2009 at 06:52 PMHi to all, I am Karen Simon. I have had chronic pain since a fall in 1989 which damaged my c4,5&6 disks. I damaged them enough to be disabled but not enough for an operation according to my insurance company. My neurologist agreed to an operation and I certainly was agreeable to anything that would give me my life back.
Well after trying to work with my condition for almost 10 years, I finally stopped working when my body seemed to go wacko with painful sensations dx'd as fibromyalgia.
It took 1 1/2 years to finally get on SSDI. I also had to move from California to Oregon before being approved. Even though it took the move to Oregon to get on SSDI, the doctors in California were more sensative to me wanting to control my pain, than the doctors in Oregon. I have been given everything except pain medication for pain control. This is just unbareable and unforgivable.
I finally went to a pain clinic for pain management. I was dx'd as grossly undermedicated and with a non-addictitive personality. I am also 60 years old, a great grandmother, and have worked since I was 16 years to the date when I had to go on SSDI.
My medicine horror story started when the new pain specialist recommended that I be given OxyCotin for a better way to control my pain. My Internist then decided to give me one of the new FDA approved medicines, Lyrica. After 2 months and 85 lbs weight gain later, I am doing worse than ever with pain, mobility, am now a diabetic, have problems breathing, increased chest pain. I can't even remember all of the horrible changes.
Why can't the government stop haressing the few doctors that are willing to treat chronic pain with pain medicines?
I am willing to take the government, my old physician, and the drug companies to court at this point.
At some point, I might have to move back to California, just to be able to get some pain relief.
I think anyone who is thinking about starting the drug Lyrcia should be warned about the dangers of taking that drug.
Sincerely
Karen L. Simon
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Chronic Pain response
Sympathetic Swans
Sunday, August 30, 2009 at 02:36 PMOh you poor soul, my husband has been in chronic back pain for about 4 months, and I can't imagine him living with it for over 20 yrs!! You really should write a book.It could help people with Chronic pain, relate and cope , and hopefully find a better place to rest in with themselves knowing how disabling pain can be. We truely feel for you. Please let us know if you'll write a book.It could also be very theraputic to put it all down on paper. God Bless.
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Chronic Pain
Nicole Kercheval
Monday, August 31, 2009 at 11:43 PMI think you should most definately write a book about your experiences and much other people's as well. I have been dealing with chronic back pain ever since a trauma happened to me almost 8 years ago. Then a few more trauma's happened after that only worsening what I was already going through. I would have to say it is so good to hear what has or has not worked for someone, for I have been going through so many different treatments in the last 7 months for my pain severely worsened to the point where I am in and out of the hospital, even on my husband and I's anniversary dinner night. I have tried steriod's, injections, medicine, therapy and nothing has worked for me for the past years and still isnt working. I am now on pain medication and muscle relaxers and ect. I am still in so much pain. My mri shows some what of arthrititis and a few other things, but I was diagnosed with chronic pain. I read what you wrote and now I am horribly scared. I do not want this to take away the rest of my life. I have not had children yet and I want to wait until this is taken care of before I do, but with what you have said, it worries me that this is just what my life will be. I have no sleep anymore, well that deep sleep that my body needs. I only fall asleep somewhat because of all the meds. My body constantyly hurts. I am unable to drive, which leaves me stranded at home all day. I am unable to work and do what I love. The worse part is, nobody has been able to give me clear answers and medicine that can fully help me. There is no way I am being on pain meds the rest of my life.
I am so sorry what you have gone through and what you are going through. I pray you can get relief from this pain as I pray for myself as well. I do have hope for us both and many others out there. I pray we are able to be healed and live a happy normal life once and for all. I certainly pray that you can have a chance to write your book, because I feel as if it would help a lot of people who are scared like me, and don't know what to do, or just need to know there are others out there who have survived, are surviving it and how they just so happen to live there life with this extreme of a problem. I pray God blesses you and your family so much more.
re: Chronic Pain
Minn/AZ gal
Tuesday, September 01, 2009 at 02:36 PMNicole Kercheval, Thank you for your response. I am sorry that I scared you with my story of a treatment gone wrong. I believe that my small size was the main reason why I had such an extreme reaction to the muscle injection. I am only 4"8"". Thanks also for you encouragement to write my book. I have actually started writing it and you are just the kind of person I hope to help by documenting my own 20+ year struggle. In the first years of chronic pain, I read a lot of inspirational "overcoming tragedy" books and I got a lot of encouragement and strength from other people's stories. However, none of the books were specific to the needs of chronic pain sufferers so I hope to be able to write a book that will fill that need. Believe it or not, in spite of the fact that I am still in pain, I am actually a happier person than I was before the pain. I have found a way to live my life that works for me. Even so, it never gets easy and it is a continueous battle to keep my life in balance.
I thank you for your prayers and will keep you on my prayer list also. Prayer is POWER.
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Untitled Comment
pamel2121
Tuesday, September 01, 2009 at 06:20 AMwell i really dont have an exact answer to your question but i can tell you that im in chronic back pain and im never going under the knife even if i suffer all my life with myh pain..many people hace stayed paralized or in worst conditions than they where before surgery so i suggest been brave or take pain killers untill it calms down a little but dont get more surgerys. As for the muscle injections it seems its painfull enough then having to go trough that is really hard i even get anxiety now with all of the pain i get i feel hopeless...good luck
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Untitled Comment
mr
Wednesday, September 16, 2009 at 12:36 AMive been dealing with back problems since 1979 and ive had 6 surgeries with 2 rods and 2 cages and still it didnt work the dr told me i would be 50 % better after the last surgery what a joke ive tried every med out there oxy and all the way down to tylenol 2 now im taking ms cotin and vicdin and thats not working so if someone knows what will work email me @ harley2slow@verizon.net thanks mr
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Untitled Comment
spencecats
Monday, October 05, 2009 at 11:32 PMI went down a slide at 8yrs. old, when I broke my tailbone. At 12yrs. old I woke one morning & couldn't move my legs, somehow I got to the phone & called my Mom at work. I was crying & scared to death, she came right home, something she has NEVER done. Being a single Mom she worked 2-3 jobs many times & wasn't payed sick leave as a Cosmology Teacher, in those days. She took me to a Chiropractor but could only afford a few treaments, we didn't have Health Ins. many days I learned how to crawl around the house, pushing a stool. I still had my chores to do & my sisters, I was the one who got in trouble if hers wern't done, not her.
Well Mom liked to move, her moves were 3 days of work, cleaning the old apt., then cleaning the new house in between. Unpacking what boxes we could to fill up with more stuff to move to the new house, with only a few hrs. of sleep. I don't think all those moves 'helped' my back any, or the 5 trips we took back to Chicago, then back to Calif, all in the Corvair with our cat & a Tortise, fun times. Those trips too were 3 days of driving.
I'v been in pain 24/7 close to 40yrs., still expected 'to do it all'. When my parents divorced when I was almost 10, I became the Adult. Our first move to Calif was to get away from my abusive X-Dad, as I call him.
In my early 20's I married & FINALLY had health ins. but an H.M.O. when thery were just starting. I found a G.P. I liked & knew he carred, still he used the 'excuse' that my ins. wouldn't pay for better care of my back pain. He sent me to the Dr's he could, many told me..'You just don't want to work'..'Learn to live with it'. Many times I would rush out of their office to get to my car & sit there & just cry, I could see on X-rays my spine wasn't right. I set out to find out what I could about back pain, with 3 young kids, working part time & the 'free' baysitter for every kid in the neighborhood. This was in the '70's, all I could take was handfulls of asprin, many nights my students would roll out a chair for me to even get into the school. I picked everyone's brain's about surgey, how it turned out, I meet many people who surgey didn't work & now they were confinded to a wheelchair. Finally my G.P. did give me some pain pills but only so many a wk., he found a Dr. who would give me 'Trigger' shots 2 to 3 times a wk., which really didn't help me much. Him & my ins. co had a 'fight' about something, so I couldn't see him anymore. So I started the Dr. 'merry-go-round' again only to hear the same old crap. I did have an operation where they shaved a disc, that was preventing me from walking, my daug. had to help me in into the tub, I was so missable & it took the H.M.O. 6 mons to O.K. that small surgey. The Dr. that did the surgey wanted to do so much more, but it wasn't O.Ked by my H.M.O.
My Husband changed jobs & we could afford better Ins., the 'shot Dr.' had learned some new tricks & I let him 'try' them on me..I had nothing to loose. That Dr. was able to give me better meds. still many days they didn't even calm my pain down, I started looking for other treaments.
I think I had everything out there, the 'Jerry Lewis' thing, which made me sleep day & night, accupuncture, I wore a 'Tens Unit' day & night, then had problems getting the pads that wouldn't make my skin itch. Even had 'Botex' injected in my muscles by 2 differt Drs. I was told I had 'Fibro' before many Dr's belived in it, I know there was more, just can't hink of them now. I did have one thing done which was starting to kick in a I.D.E.T., my mood was better I was taking less meds, I was hoping this was going to help me. Then as I was putting Stuff in the garage rafters, I slipped on the boat fender & fell 'spread eagle' on the cement floor, for 3 wks. I couldn't sit, lay, walking hurt, I was back to 'screaming pain' days. My Ins. wouldn't pay for another one, it wasn't approved by the DEA, FDA or who ever the Gov. uses to approve 'our treatement'.
I have DDD, discs that are worn away so many places it's bone rubbing on bone, Kyphosis & am told that the 'Big P' in my upper back should fuse it's self back onto my main spine, osteoporsis since my early 40's, arthritis(?). I know there is more, I see my pain Dr. on wed. lets see what else he finds, or if I have gained enough weight to try a pain pump.
I tripped & broke the kneecap on my L-leg, my Ins. approved for me to try the pump, but the Dr. didn't think he could work around the way they put the cast on my leg, then I fell trying to walk on my front which has a slight hill & broke the upper bone in my R-arm & injured my shoulder. Thats a GREAT way to loose weight, when my Daug. cooked, yes they told me about food being ready, but I had no way to get any of it. I went from 150lbs. to 90lbs in 5-6 mons, I was 5'7". My knee didn't heal right, so that buckles as I'm walking & I fall. This 'BOOK' has to end.
But since I'v always been the one who carred for everyone, Husb. whoes Cancer came back after 7yrs., Mom who wouldn't let my sister or me to 'say' we were sick, she would tell me to 'swallow it' & carry on is now the sickest person in the world, my sister who was 'Mom's Baby' did 'HURT' her back by doing stupid things. All of them expect me to care for them, SORRY I just can't anymore, my Mom too I'm sure is starting 'Demntia' & will not ADMITT I have back problems, I'll have to find the lady who is having the same problems with her Mom. If she wan't to 'Talk' to me about it? My Sister did drink wine day & night, but would talk about the meds I was taking, to everyone, going so far as telling them I'm 'ADDECTED' & take more then a hundred pills a day even saying I'm now starting on 'Street Drugs'. Well she spend 8 days in the hospitial, cause her liver was shutting down, thats why I don't like to tell to many people what meds. I'm on. A Chropracter she has been going to 20yrs. or more agreed with her! To a 'Member' who has so much problems getting out of bed in the morning, well I'm up 2-3 times a night as another 'Member' is, I take my meds as late as I can at night it seems to help me as I rome the house at night. What meds I now take only calms my pain down, I also STOPPED carring for everyone who is ..'Just so sick', started KICKING my adult kids off the couch, making them do more. Ya there all all whining & crying, I just can't do it anymore it's time for all of them to grow-up.
Sorry this is so long, I should of warned everyone, I wonder if the site will even take the post? I'll try to be shorter next time. Everyone have a nice night..or as many say..'Have a pain free night', I want to strangle those people..what is a 'pain free' day or even a minute?
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Tired of it all
sherry
Tuesday, October 06, 2009 at 11:40 AMI understand what you mean. Over the last 10 yrs I have had a cervical and a lumbar surgery, chiropractory, healing touch, massage, pain meds, muscle relaxants, yoga, accupuncture, PT (many times, PRI twice and now PRRT. I even had lap-band surgery hoping weight loss would help my back. I still struggle everyday with just doing the slightlest task without pain shooting down my left buttock to my left calf and sometimes to my feet. Sitting for any great length of time is the worst. I try not to focus on the pain and what agrevaites it, but I am cognisent of triggers and try to avoid them most of the time. What irritates me is when either people don't believe that your pain is annoying to unbearable or when you go to the doctor and he/she prescribes medication that causes the pharmacy staff to give each other the look when you go to pick it up.
Just yesterday I went to a presentation on low back pain at the hospital I work in. Or at least I thought it was about low back pain. Instead, it was a presentation by a PA (that I have seen myself) on how not to get tricked into prescribing opioids to anyone under 65 because we all get addicted to them and then become drug seekers. She went through several of the possible treatments for low back pain, all of which I have tried, and then went onto say if you are under age 65 you will just have to learn to live with the pain or find what treatments will work for you. She didn't address the person with back pain that has tried all of the mentioned treatments and they didn't work. It is practioners like this that really drive me crazy. If you don't fit into their cookie-cutter plan then either you are a drug seeker or learn to live with the pain. She didn't discuss the difference between addiction vs. tolerances. Recently at the facilty that I work at there was a questionaire handed out to see how many healthcare workers could tell the difference between addiction vs. tolerance. Sadly, many failed. Like I tell some of my friends, if a diabetic needs insulin or someone who is hypertensive needs BP meds there is no stigma, but if you have chronic pain it is no different. I realize that there are drug seekers who lie about their pain, but why are people with chronic pain made to suffer because of the rotten apples? Someday my wish is that there is a blood test or a radiological test that measures pain. Anyways, keep trying. I believe that there will be medical advances to help the millions suffering. Just remember to ignore the idiots who don't understand and try to have at least one person in your life that you can have a non-judgemental conversation with.
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Chronic Pain and stopping invasive treatments
itbgct
Wednesday, October 07, 2009 at 02:38 AMI have suffered with debilitating pain for 10 years, and for 7 years prior to that I had an average scale of at least 5 out of 10 on a daily basis. I have come to the conclusion within the last three years that I do not want to have excessive testing, and I have been advised by several pain physicians that I should not have back surgery. In fact, I have never had surgery unless it was absolutely the only and last option that I had. I feel that earlier on, I was willing to have testing done in the hope that they would find something that could be done to improve the quality of my life. I have come to grips with the fact that I do not believe there is a solution, and I will have to live with the medical conditions as they exist. I would like to taper off of my pain meds, but after several attempts, I can see that I would not have any quality of life because basically I've just accepted life as it is to be for whatever reason. It seems to be an acceptance of my general health condition.
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20 years of chronic back pain mostly at night.
not addicted.
Monday, October 12, 2009 at 05:04 AMI have been suffering with this chronic back pain mostly at night for the past 20 years. I also have RLS which adds to the pain. It comes when I sit for a wxtended periods of time, (movies) or long dinners). I rarely comes during th day when I am moving around, playing golf or walking. I have tried 20 different kinds of pain killers and th ONLY one that works and completely takes away the pain is Oxycontin 80 mg. But the stigma attached to this when anyone hears I am taking this causes much discussion and questioning motives.
If anyone has taken Oxycontin for real pain, not to get high, it really does work. I am not talking about snorting it or shooting it up, just swallowing a small pill and a miracle happens. The pain goes away and you are not dizzy, or high. or neaseus. just pain free. But besides the stigma is the cost. for 60 pills the cost is $570.00
If you are in constant pain at night, as I am, this is too costly on my salary and the drug plans of course, don't cover it. If anyone has any suggestions on any Part D drug plans that would help defray the cost, please let me know.
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Chronic Pain
Russ fro WV
Tuesday, October 20, 2009 at 08:28 AM -
CHRONIC PAIN
teegeeme
Saturday, November 21, 2009 at 12:35 PMYou know that is simply a question one has to make out on their own. I also have had chronic total body pain for more than 25 years. Allot of it is hereditary and I've had over 6 traumatic injuries. I currently have 5 herniated discs and a broken shoulder. I've had just about every treatment including surgery. I've been on every pain killer available including self intoxication with alcohol. Currently I'm taking morphine, and 13 other medications. I haven't cosumed alcohol in 15 yrs. I've come to the conclusion for myself that I will not have any more invasive surgeries or treatments such as steroid spine injections. I've no other choice except learning how to live the most fulfilling life as possible. Our minds are so strong, you can choose to be miserable or happy. I know that it's not that easy to do. Stay positiive. I strongly believe in God and laughing. I laugh and cry at the same time but overall I choose to be happy. I have no other choice. I have thought of suicide but what good would that do....it's the most selfish act in the world. I know, I've lost loved ones. Reach out to God and your family and strangers. Smile, help someone in need, write a journal do any and everything that you can to make the best out of your life. My heart and prayers go out to all people who are in agony. Smile.
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Yes I have considered accepting my chronic pain and stop seeking relief. I then think of the pain - mine is rather severe - and realize that without treatment I would not have much of a life. I guess the answer to this depends upon the degree of pain you have.







Hi Minn/AZ gal, Welcome to ChronicPainConnection. I'm really sorry to hear about your experience with muscle injections. I haven't ever heard of someone going into cardiac arrest from muscle injections. That's really scary. What were they injecting you with? I'm glad to hear you're ok now at least.
As for when, if ever, to stop trying new treatments, that's a really personal decision that will be different for everyone. When it comes to any treatment, I think we have to weigh the severity of our pain against the possible risks of the treatment. I'm not sure any of us completely gives up the idea of finding a treatment that works – we just become a lot more cautious about trying things.
I'll be glad to share where I am personally on this subject right now. I have fibromyalgia. A few years ago I found a treatment combination that keeps my pain at tolerable levels. (For me that includes medication – tramadol, acupuncture and myofascial release therapy.) I still have a lot of limitations. I certainly don't have my old life back. But I'm content as long as my pain stays low enough that I can continue to work from home and support myself.
In the past couple of years, three new medications have been approved to treat fibromyalgia, but I haven't tried any of them. Since each only works for between 30-40 percent of FM patients, I'm not willing to take the risk of giving up something that works fairly well for me to try something that may not work at all. My philosophy at this point is "Don't rock the boat." If what I'm doing stops working as well, I may change my mind. But that's me. Perhaps if I were younger and really wanting to lead a much more active life, I might be willing to take more risks. It's hard to say.
I certainly understand why you would be hesitant to try any more treatments after your last experience. I hope you've been able to find out why the injections caused such a severe reaction for you. I'd definitely recommend getting a second and maybe even a third opinion before trying any other invasive treatments. I also hope you'll feel free to ask about any treatment you might be considering here to see if others have tried it and what their experience was. We have lots of folks here with chronic back pain problems, so you'd likely find some to help. We're happy to have you here with us. – Karen