Chronic Back Pain for Years

Posted by jlfisher56 @jlfisher56, May 2, 2017

6 back surgeries (extensive cervical and lumbar fusions) with neurological complications. Left with chronic pain. Accident happened in Nursing career 1992 and worked with first fusions until 1999 (failed fusions). At my age, and as a former nurse educator, I never wanted to had to rely on medication/s for the severe pain. Having thoroughly exhausted exploring sites using non-pharmaceutical methods, using psychological methods, biofeedback, trying to accept my limitations, i.e., I still believe somewhere…out there…is hope. The strong medicine has caused gastroparesis, further complicating my health problems. They are too numerous to write and I will not focus on them. I am looking for “help” and guidance. If I can be of assistance to anyone throughout their trials, (perhaps similar to some of what I have gone through), I will.

Hi, My name is Eve. I too have had back problems for years. I have had two surgeries, Kypoplastie, pain stimulator and injections. None worked for me. I don’t want to rely on pain medications either. I have degeneration and 5 compression fractures. If I don’t do anything, I don’t hurt to much, but if I try to do anything like walking much or using my arms, then I really hurt. I am now trying water exercise. Hope it will help. I really feel for anyone who has back problems. One time when I was waking up from surgery, my girls told me I kept telling them to ‘Take care of your back’ over and over again! I hope that someday they will come up with something to help us! Thanks for letting me vent.

REPLY

I wish I could be of some helop to you. Back pain is awful. I suffer 24/7 and had spinal fusions and both hips replaced. My back has too many problems. Susrgery would never help. Injections and therapy have not helped. I stay away from all heavy drugs. Ibuprofen (2 three times a day). Sometimes it makes it bearable. I will not try a stimulator, so I am limited as to what to do.

REPLY
@bblinder

I wish I could be of some helop to you. Back pain is awful. I suffer 24/7 and had spinal fusions and both hips replaced. My back has too many problems. Susrgery would never help. Injections and therapy have not helped. I stay away from all heavy drugs. Ibuprofen (2 three times a day). Sometimes it makes it bearable. I will not try a stimulator, so I am limited as to what to do.

Jump to this post

@bblinder

I understand not wanting to be over medicated. I know that I have been at times, especially when I was just starting a new medication. I take a low dose of MScontin, which is morphine in a pill form. I was taking 90mg a day, but in June, I had a spinal cord stimulator implant, and I have had more than 80% pain relief. So, I’ve been able to reduce the morphine to just 30mg, which doesn’t mean I’m pain free, but I can handle it. I stopped taking the morphine awhile ago, and realized how much it was helping. I was happy to see that I could taper off it without any problems. I don’t want to be addicted to it. But. …I will continue taking it as long as it helps with the pain.

The drug epidemic has made us all scared, which is too bad, because the pain medications, when they’re prescribed and used responsibly, are of great benefit.

In her final weeks of life, my mother-in-law was afraid to take the morphine, because she was afraid of being addicted to it. We had to reassure her that needing it for pain relief wasn’t the same as addiction. It was intended to reduce her pain, not to give her a high.

Our bodies are wonderful things. When they become less than wonderful, as they often do at my age, they need a variety of supports. Eye drops, arthritis creams, skin cream, spot removers, protein supplements, and the list goes on. I never needed any pills until I turned 50. But after that – !!!

Pain control or management is a reality of life after a certain age, or for certain problems, and I don’t have a problem with taking what I need, to be able to keep going.

But that’s just me. We’re all different, aren’t we? Why not have a conversation with the pain specialist about how you feel. He might be able to recommend something that he and you are both comfortable with.

Jim

REPLY
@bblinder

I wish I could be of some helop to you. Back pain is awful. I suffer 24/7 and had spinal fusions and both hips replaced. My back has too many problems. Susrgery would never help. Injections and therapy have not helped. I stay away from all heavy drugs. Ibuprofen (2 three times a day). Sometimes it makes it bearable. I will not try a stimulator, so I am limited as to what to do.

Jump to this post

You sound like a very wise man, Jim. I agree that what works for one, might not work for another. I’m glad that the pain stimulator is working for you. I wish it had for me. I pray and with God’s help, I will get through this!

REPLY

@For Back pain readers I just read a good selection about spinal injections by Dr. Aranda (pain advocate) in the Pain News Network (PNN on Facebook) that I received Oct. 2. This maybe of interest for those considering spinal injections, I recommend reading the comments section where several comments are from those who have had these injections. Good Luck, 19lin.

REPLY
@bblinder

I wish I could be of some helop to you. Back pain is awful. I suffer 24/7 and had spinal fusions and both hips replaced. My back has too many problems. Susrgery would never help. Injections and therapy have not helped. I stay away from all heavy drugs. Ibuprofen (2 three times a day). Sometimes it makes it bearable. I will not try a stimulator, so I am limited as to what to do.

Jump to this post

Thank you, @hosta . I do pray for and rely upon God’s wisdom. “If any one lacks wisdom, let him ask of God…” Bottom line, it’s all in His hands.

Jim

REPLY
@hosta

Hi, My name is Eve. I too have had back problems for years. I have had two surgeries, Kypoplastie, pain stimulator and injections. None worked for me. I don’t want to rely on pain medications either. I have degeneration and 5 compression fractures. If I don’t do anything, I don’t hurt to much, but if I try to do anything like walking much or using my arms, then I really hurt. I am now trying water exercise. Hope it will help. I really feel for anyone who has back problems. One time when I was waking up from surgery, my girls told me I kept telling them to ‘Take care of your back’ over and over again! I hope that someday they will come up with something to help us! Thanks for letting me vent.

Jump to this post

@hosta I can sympathize with what you are going through, back problems are awful. I too had kyphoplasty for a broken vertebra. It did help, thankfully. I am a huge advocate of water excercise. It’s so good for you and without much impact. I think it has really helped my back (and knees) because I sort of march up and down the pool and doing that causes me to keep my back straight. I do that on my own and also water aerobic classes with a great group of mostly women, ranging in age from their 40’s to their 80’s! Give it a try.
JK

REPLY
@hosta

Hi, My name is Eve. I too have had back problems for years. I have had two surgeries, Kypoplastie, pain stimulator and injections. None worked for me. I don’t want to rely on pain medications either. I have degeneration and 5 compression fractures. If I don’t do anything, I don’t hurt to much, but if I try to do anything like walking much or using my arms, then I really hurt. I am now trying water exercise. Hope it will help. I really feel for anyone who has back problems. One time when I was waking up from surgery, my girls told me I kept telling them to ‘Take care of your back’ over and over again! I hope that someday they will come up with something to help us! Thanks for letting me vent.

Jump to this post

Thank your for you feed back. Yes I am in a water exercise class. My problem is that it is so hard to get there. I live about 15 mi;es from where the class is held. With so many different doctor appointments etc: I haven’t been able to get there on a regular basis. All the specialist that I see, say that all my problems come from the back. The first kyphoplasty did work (done next day) this time it was 6
months after I fell that the told me. So I went to the same doctor that did the first one. He said it was to late to do it. He showed me how much damage I had in the spine. Yesterday the neurologist said I had nerve damage which causes the pain in my legs and feet and shoulders. The pain management doctor might do the burning of the nerves (I don’t know the right term) I must get back to the water exercise class. I am 81 years old, but there is so much that I want to do. My faith in God will help me do it. I have good support from my family and my church family.

REPLY

Hello, New here. After reading every one of your stories I don’t feel so alone. I also realize many people seem far worse off than myself. I too have been worried about all the new regulations on pain medicine. It makes zero sense to take away drugs that often can and do change people lives for the better. I would not be able to get out of bed let alone keep working 50 hours a week without help. It drives me crazy that a few bad eggs ruin it for all of those who need them. I have a failed fusion currently. Found out about 18 months ago. My rods fractured in 3 places and a few screws have also detached. The pain I have been experiencing is excruciating and some days seems unbearable no matter the amount of pills I take. My next step is acquiring insurance and finding a neurosurgeon that isn’t affraid of touching me. Dealing with the stress and anxiety daily is also very difficult. I constantly worry that even if I Can find a Dr willing to help that I won’t be able to support my family while I recover. Life is so hard sometimes. I have incredible pain tolerance but I’m really getting tired of dealing with this every day of my life.

REPLY
@frankjr

Hello, New here. After reading every one of your stories I don’t feel so alone. I also realize many people seem far worse off than myself. I too have been worried about all the new regulations on pain medicine. It makes zero sense to take away drugs that often can and do change people lives for the better. I would not be able to get out of bed let alone keep working 50 hours a week without help. It drives me crazy that a few bad eggs ruin it for all of those who need them. I have a failed fusion currently. Found out about 18 months ago. My rods fractured in 3 places and a few screws have also detached. The pain I have been experiencing is excruciating and some days seems unbearable no matter the amount of pills I take. My next step is acquiring insurance and finding a neurosurgeon that isn’t affraid of touching me. Dealing with the stress and anxiety daily is also very difficult. I constantly worry that even if I Can find a Dr willing to help that I won’t be able to support my family while I recover. Life is so hard sometimes. I have incredible pain tolerance but I’m really getting tired of dealing with this every day of my life.

Jump to this post

@frankjr – I have 5 siblings, and somehow I’m the only one who hasn’t had back problems and surgeries, though I went down 12′ from a ladder, landing in a seated position, and ouch, a few years ago. I’m sorry that you’re enduring such pain, and I hope you’re able to get the help you need. I concur on the subject of pain meds. A lot of need and so much abuse. Where will it lead us?

Jim

REPLY

@jlfisher56 I’m so sorry you have suffered for so long. Pain is not fun as we here all know it. Except for offering this advise about how I manage my own pain associated with hip arthritis I am not able to offer more. I do exercise, not overly so, as my arthritis can only withstand a certain amount. The exercises are gentle range of motion prior to bedtime and I make sure to keep hydrated as that helps carry off inflammation. I found that for my arthritis I needed to do side lunges and swinging my legs outward to strengthen the glut muscles and I sure suffered for the next few days. I think there may be some type of slow moving exercise for you….maybe Tai Chi as it is very slow and gentle movements. Though I still do need to take perkoset type meds some evenings if I do those few exercises it is very helpful. Please do try some gentle exercises and don’t overdo it. Then get back to us to let us know how you feel.

REPLY

Well, I certainly can relate. I had the Nevro HF-10 neneurostimulator trial a few weeks back. It was wonderful for releiffor L1 through L5 back down my legs and into my feet. This, by the way, also can reduce greatly or nearly totally, the upper back, neck and into the shoulders sepending on placement of your leads. I have severe sciatica problems along with the low back. I am having it permanently implanted November 27th. it’s an excellent option as I do not want to be on these pain medications any longer.There’s just no life in those. I highly recommend that you go see your pain management doctor and look into having the trial done for yourselves.

Randall

REPLY
@jlfisher56

Thank you Justin and I gladly will share my story if it can help anyone. It is very lenghty so I will try to keep it as abbreviated as possible but to the point. I can understand some of what physical therapy you “might” have gone through post-op with an ankle fusion (had a total rt knee and lt hip replacement). You are correct…long and hard.
I injured my back as a nurse involving a patient. For 2 years I was misdiagnosed as a “lumbar strain” when actually it was a cervical cord compression at C5 to C7. I did have a slight herniation at L4 and slippage and most pain seemed to come from there. My bowel and bladder were affected, legs were weak and arms. I worked in the NICU as “light-duty” using a special back brace but over 2 years continually symptoms became worse. The head of physical therapy stated my EMG showed more from the cervical or upper thorax than lumbar. I started to pronounced arm weakness, neck pain,and cervical headaches. The physiatrist stated, “I tell the doctors to always check the whole back because often the problem is coming elsewhere and not where the patient’s pain is.” My doctor “knew” better and thought MS but the MRI was negative.
To shorten the story, I went to the”pioneer of back surgery” in Philadelphia (an orthopedic surgeon I knew) and saw his neurologist. First glance he noticed in my face the abnormal jaw reflex and the change in the curvature of my neck into an “L” shape. I had almost a “total” compression C5-C6 and C6-C7 just about as bad. My doctor stated I should have been dead or a quadriplegic and was amazed I was even walking. I had an anterior fusion 2 years after my initial injury (1994) and then the slippage and herniation L4-L5 worsened (I was working part-time as an instructor at my hospital).
I needed trimming L4 and fusion L5-S1 with hardware posterior in 1995 and kept working. My symptoms improved with some neurological deficits remaining but not that severe. Pain only when walking too much and not taking enough breaks. As time went on, I started have all the original symptoms reoccur.
I had what is called a “failed” fusion. My fusions were unstable and areas above and below were herniating or impinging nerves. The peripheral nerves to arms, legs, bowel and bladder and now increasing pain happening more and more were becoming constant. In 1998, thorough testing (discogram, MRIs, EMGs, i.e demonstrated I had a “bad” back). I almost fell off the litter when the x-ray doctor told me.
These were extensive and because of years of the “failure”, permenant nerve damage has remained even though some did get better. I had a posterior cervical fusion C4-C7 and 6 weeks later anterior cages and posterior fusion L3-S1 Lumbar area. I developed a post-op hematoma and infection of the lumbar fusion which worsened the neurogenic bowel and I needed 2 bowel operations and am left with a functioning colon but only 18 cm. The neurogenic bladder did become better in time.
I am sorry this is so lengthy but if I can help anyone, just a little more. I know length can turn people off! I developed scar tissue in the spinal cord arachnoiditis (lumbar area found in my testing before my refusions) that causes a lot of chronic pain, had nerve pain and chronic pain, which worsened as the years have gone by. Due to the nerve damage to my bowel, plus certaain medications, gastroparesis (decreased contraction of the nerves to the stomach) which can be very serious. I had botox to the LES plus take medicine to help the stomach to contract. Also, my fusion healed crooked, and I have “torticollis” (very painful), and get botox every 3 months. Many of my problems went undiagnosed for years, thus causing permanence of my symptoms to some degree.
I do apologize for the length. I do not want to bore or act like I have it worse than others. If I can help anyone or if anyone can help me. I greatly would appreciate it. I have tried many “mental” and “physical’ therapies plus my TENS unit as an adjuvant but still need my chronic pain and gastric medications. Some of the chronic pain medications are continuing to “destroy” the stomach nerves which really upsets me. I’d love to get off everything but after all these years and all the complications, am loosing hope. I keep praying.
Best to you with your ankle. I am sure you have your good days as well as bad and the “weather” isn’t always your friend. It is funny how so many have told me they can predict the weather from their “bone” injuries and I must agree LOL. Take care. Joan

Jump to this post

Joan, I read your letter and learned so much. I have had problems for years with my c1-3 disks in the neck, caused by arthritis build up material and a car accident.
What was so interesting for me was the facts about the stomach and colon muscles. I have so much pain there, that I went to the ER, but they said, it is caused by the pain meds, also the terrible headaches. So I am trying to wean off the opoiods slowly.
But it so terrible to incur that pain, and I hope, they are right about it, caused by the meds.
I also had an open brain surgery three years ago, after I complained about headaches. It was serious and I was lucky.
Nobody, but my sweet husband understands, what is going on with me.

REPLY
@rw5473

Well, I certainly can relate. I had the Nevro HF-10 neneurostimulator trial a few weeks back. It was wonderful for releiffor L1 through L5 back down my legs and into my feet. This, by the way, also can reduce greatly or nearly totally, the upper back, neck and into the shoulders sepending on placement of your leads. I have severe sciatica problems along with the low back. I am having it permanently implanted November 27th. it’s an excellent option as I do not want to be on these pain medications any longer.There’s just no life in those. I highly recommend that you go see your pain management doctor and look into having the trial done for yourselves.

Randall

Jump to this post

@rw5473 – I had a spinal cord stimulator implant in June, for the peripheral neuropathy pain in my feet, and I’ve had around 80% or more pain relief. What a huge blessing! I still take 15mg of morphine sulfate twice a day to help with the residual pain. My feet hurt when I walk or stand on hard surfaces for very long, but rest relieves that burning pain.

REPLY
@eileena

@jlfisher56 I’m so sorry you have suffered for so long. Pain is not fun as we here all know it. Except for offering this advise about how I manage my own pain associated with hip arthritis I am not able to offer more. I do exercise, not overly so, as my arthritis can only withstand a certain amount. The exercises are gentle range of motion prior to bedtime and I make sure to keep hydrated as that helps carry off inflammation. I found that for my arthritis I needed to do side lunges and swinging my legs outward to strengthen the glut muscles and I sure suffered for the next few days. I think there may be some type of slow moving exercise for you….maybe Tai Chi as it is very slow and gentle movements. Though I still do need to take perkoset type meds some evenings if I do those few exercises it is very helpful. Please do try some gentle exercises and don’t overdo it. Then get back to us to let us know how you feel.

Jump to this post

Sorry I haven’t written in solong. Much has been going on. I found a wonderful chiropractor associated with a local fitness club. He has really helped my spasms with his treatment modalities that include Russian stimulation (better than regular TENS), heat, exercises, Massage, manipulation, a “device” like an injector but doesn’t penetrate the skin…separates muscles in spasm so that growth factor can occur, allowing muscle regrowth and healing. He trained on soldiers going to Iraq and Afghan.,trying hard to prevent them from surgeries. My neck spasms and burning significantly decreased and my left turning ability greatly increased. The cervical fusions severely limited me causing dystonia. The spasms, burning, limited neck mobility just got worse and no exercise or medicine helped. Even the botox wasn’t helping. The muscles needed to be strengthened.I was going weekly and now every 2 weeks. I have a few different home exercises and so far what he does helps. Other patients gave positive feedback before I saw him and I have to say the same. All I ever had was the same thing over and over that did not work and my spasms just were worse. When my doctor stated after my botox in July, Joan out of all my botox patients, your spasms are the worst and don’t get better. THIS after seeing him 5 years. Just send me out the door with pills after botox! WHY don’t the spasms get better was my question? Thank GOD this man came into my life. Just hope the treatment will last. The spapsms started in 2004 and have been many years so this REALLY has been a blessing!

REPLY
Please login or register to post a reply.