I am 46 years old and have always lived a very active lifestyle. About 4 years ago I began having terrible pain in both my knees. Trying to keep this short: I had to give up a lot of my activities that I loved because the pain was unbearable. I went to see a leading Ortho Knee specialist who diagnosed me with severally misaligned knees (distal displacement I believe is the medical term). It is congenital and I have it in both knees. During this time I also began experiencing lower back pains and, again trying to keep this as short as possible, discovered through an MRI that I had three degenerative and bulging discs in my lower back! Thus began my journey with chronic pain and a chipping away of my joy and quality of life. I had three injections in my lower back last year and was told that more than three was not recommended. The injections would help some but invariably my back would start bothering me in a couple of months and then go out. With my knees I have had three procedures (2 on one and 1 on the other). I need support and help with how to deal with the chronic pain. The only thing that that I have found works are the times that I am given prescription pain medicines but I have concerns over long term use. I have found that my quality of life DRASTICALLY IMPROVES, I enjoy being around my family and others, and am able to function on prescription pain meds. The longest span of time I have taken them regularly was for about 6 months when I had two knee surgeries back to back. During that time there were some times when I took too much and did not like the lethargic out of control feeling it gave me. I went from 10mg/500, to 7.5/500, to 5mg/500 codine and tylenol. I became very good at regulating the amounts to just what I needed..even to the point of taking half a pill if that is all I felt I needed. I found that taking around 4 5mg/500 pills daily helped a good deal but the post surgery time period ended for anything with codeine in it. I don't like to drink but I do sometimes because it will temporarily relieve the pain but the pain always returns and the hopelessly grows. I never once drank while taking pain meds so I know that when I do drink it is to get some temporary relief from the pain but it takes me away from my family and actually being "in the moment". I'm content and enjoy a much better quality of life and feel much more "in the moment" on pain meds but is it safe long term? I know the large amounts of just Tylenol I take daily with little effect at all are not good for me (1000mg every 4-6 hours) I also take 400 mg Etodolac (anti inflammatory) through my back doctor. I'm miserable when the pain meds stop because the pain always returns and my quality of life drastically declines. As I write this I am back to dreading getting out of bed in the a.m., and have pain in both knees and my lower back. I feel more and more hopeless and trapped and that I will never get my quality of life back. I lost all hope of returning to my former self but would at least like a life that is maneagable and I don't dread getting out of bed in the morning. I understand how people can get addicted to prescription pain meds because they work and the alternative is unbearable. I certainly do not want to become an addict but I also do not want this terrible quality of life. I'm praying there is some hope to be found here.
Hello looking4qualityoflife. Just like to welcome you to our site. There are several people that post here on a regular, daily basis. I noticed that your question has been up for awhile. Please be patient for you will certainly be given some sound advice from fellow members who know what you might be experiencing. best wishes extended to you, hope you do begin to feel somewhat better soon.
I can identify with you I was born with an autoimmune disease and I was born in a rural farm area and we were late in getting the polio vaccine I was shy one week of getting the vaccine, I have chronic pain due due neuromusclar problems associated with polio, I have had 12 surgeries and did well until 2003 when I started having problem associated with the damage I experienced pain that was so severe that it finally came down to 1.
either taking the pain medicine on schedule and according to directions I tried several times to stop the medicine the pain was so intense I could not walk I had to spend lots of time down, I have taken many pain meds such as Ms Contin, Fentanyl patches, Dilaudid, Oramorph, and many many others as well as combinations, last winter I caught a fall after an Ice storm we had and I had to be out and I fell I fractured 4 vertebraes and messed a disc up in my neck/back, the doctor put me on Opana extended release (3) 40mg tablets every 8 hours, also with Lidoderm patches and anti-inflammatories, I have come a long way I am down to 1 tablet every 8 hours. off the Lidoderm and antiinflammatories, my deep desire was to find relief and to be able to function and to have a quality of life, I was fortunate 5 years ago my insurance no longer would pay the doctor I was seeing necessary for me to see him, I had heard and looked and checked around I feel so very fortunate she is an internal medicine physician and she went back to school to also specialize in pain management, I had a friend who was a doctor yet I knew him from volunteering at our hospital Chemolab, he had also diagnosed me with the complications from the Polio so he had done all he could do but I valued his opinion and I asked him about this physician along with word of mouth of friends, I would wish the same for you that having a doctor who listens, spends quality time, who makes you feel that the total honesty is one of the most important things there is in dealing with chronic pain, many of the medications I have not been truely allergic to but have had severe enough effects from until they were not tolerable, yet this doctor made it a goal for me to feel totally comfortable to tell her just like it's been, I feel for you because it's also important to me to be able to function and not be so drugged up that I can't think or function without great difficulty, the doctor has worked hard to make this as feasable for me as possible. If memory serves me correctly you have to take quite a lot of tylenol of course you know the concern there is for your liver, and You know I feel sure you should not have more than 4000mg per 24 hours, or if you were for instance taking hydrocodone 10/325 if you take 12 tablets per 24 hours that is equal to 3900mg 325x12=3900mg so please please be very careful, there are doctor's out there that don't understand and I know it can be so very frustrating but I had about come to the point of thinking finding one that would help me to be able to be the best I could be was next to impossible, but you keep hanging in there, it can happen to and for you, you need to find one that you can feel the urge to be open and totally honest with and work with him/her to achieve this, Pain affects your quality of life in so many different aspects and it can lead to depression something you don't want to have on top of what you already are dealing with. just keep looking, fighting and pursuing you will in time come across someone like this it's not an easy thing to always find but it's worth looking and fighting for! I will continue to keep you in my prayers, I wish you only the very best Caringsonbj (Billy)
Reading your story and hearing the 'result' creates great concern. First there is more than one orthopedic doctor. Steroid injections are the 'norm' until surgery is required but look around and find a doctor who you feel comfortable with and find a doctor who has a team specialist, like a neurologist on board. I have been to pain management a number of times for my disease and post operative concerns. Opioid medication does not work on nerve pain, only the symptoms. Pain management has given me more then my need of steroid shots, a suggestion of acupuncture and physical therapy was recommended but when the physical therapist pushed on my back, the pressure sent me to the emergency room that night.
The PM doctor also recommended a spinal cord stimulator but after a second opinion from another doctor, a second radio frequency procedure was recommended which did not take. The PM doctor seemed to have run out of options instead of consulting with another doctor like a surgeon or neurologist. The second doctor who did the RF procedure suggested that the rod in my back may have moved or the screw attached may have come loose but there was no follow up with a team specialist. (by the way, this is the 2nd time I have heard this)
I am now going for another medical opinion with a team of specialists, including a neurologist, surgeon, and orthopedic specialists. I hope they can come up with an answer together which is needed when it comes to a medical decision on the patients condition. I do not need a pain management specialist who does not communicate the problem effectively to his 'team'. That caused me to lose faith in the PM doctor so I welcome a second and third opinion if necessary because ultimately I make the final decision on my health, all they do is advise me with their knowledge.
May I suggest the same for you. Research your medical condition on the computer and READ the history of what the doctors do and WHO specializes in what. Just remember, you are not alone, there are others willing to give their medical opinions of doctors they have visited and any advise you can share with us on this board, help us all gain more knowledge and POWER, NOT THE DOCTORS. Stay strong, and informed and pass it along!
I too suffer from chronic pain. It does completely change ones quality of life, much agreed on that point!!
There is a happy medium of sorts, you really sound as if you desperately need a good pain management doctor. IF there is a University hospital near you, please please call that hospital. They generally have great pain management clinics.
You sound as if you really need to be on some type of narcotic to me, but hey that is just this gurlz opinion. Others will disagree with me on this though. And I really just don't care because a person should NOT have to live their life in dibilitating pain!! That is why there are pain meds out there... for people that have lost their live's due to horrible chronic pain!!!
The support you will find on this site is great! We have so many members that suffer as you do, and they I am sure will answer your query soon. Hang in there.
Just know, there are docs out there that actually CARE ABOUT THEIR PATIENTS QUALITY OF LIFE!!! I am blessed with a great internist that cares very much about my quality of life.
Best wishes to you and stay with us, we care!!!
sweet lemon P.S. There are so many chronic pain meds to chose from... Opana, Oxycodone, Kadian, and I could go on and on but I wont!!
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