Chronic Pain Whatever the cause, support for managing long term or intractable pain.


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Old 10-15-2020, 05:18 PM #1
Diamond Tiger<3 Diamond Tiger<3 is offline
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Diamond Tiger<3 Diamond Tiger<3 is offline
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Default How Do You Manage?

Hello Neurotalk,

I wanted to take this time to officially introduce myself and tell my story and why I came to Neurotalk. Forgive me, this will be long but I hope you can bare with me and possibly give suggestions as to my question.

I'm a 39yr old woman in great shape and health with the exception to my spine. At the age of 22 I unfortunately ended up in 2 MVAs 6 months apart that caused a rupture disc, but I didn't know I had ruptured a disc in my lumbar although I was in so much pain. Before the accidents I was working fulltime waiting tables and also competed playing sports such as, bowling and billards pool a few days a week in both leagues and tournaments. After the first accident I tried returning back to work and also playing sports only to find out a week later I could no longer do anything, not even the chores around the house.

Like any of us I went to the doctor in the hopes of finding out what was wrong to get it fixed and me back to me before the accident. I first saw a chiropractor who felt it was whiplash and had several adjustments and deep tissue massages that helped slightly but not to a degree I could return to my life. I went to other doctors in different specialties- orthopedic and physical therapy. Over several months of this, I was not getting any better and had to begin pain management regiment. I also had x-rays and MRI scans done that all came back negative. I continued on this path and went to more doctors determined to find the answer to my dx to fix it. Each time after I had the door shut on my face in the sense of the doctors all felt I was crazy or a addict there was nothing wrong with me after reviewing the x-rays and MRIs.

This went on for over 4 years. By this point I had saw over a dozen doctors. I was put on a heavy amount of medication to help with the pain, such as, Oxycotin-20mg, Dilaudid-8mg, and Soma-350mg. I was also given Temazepam and Seroquel to help me sleep at night.

I finally found a physician who truly took the time and listened to me and genuinely wanted to help me. He was the first doctor that mentioned a specialized test called a Discogram that would be the definitive answer to finding the bad disc he felt was the problem. He was so right and the test showed on a scale of 1-5, 5 being the worst, I had a grade 4 tear.

I also was suffering from sciatica and one of my other physicians had dx me with having a split piriformis muscle that was pinching my sciatica. Of course this could not be found on any scans it was a simple evaluation of me that resulted in that dx. My first surgery was to release the sciatic nerve. Just as my surgeon had thought, I did have a split piriformis muscle pinching the sciatica. He went in and cut one side of the muscle. It made a big difference with my leg and my butt feeling like it was on fire every time I sat. But, it still didn't resolve my back, nor fix the ruptured disc I had. A year later after the dx of the rupture disc, I underwent surgery having a disc fusion of the L5-S1 called a ALIF. The day of surgery after I woke up from the anesthesia, I demanded the nurse get me out of bed so I could walk. I had to know I felt better and the bad disc was gone. That night I wore out the hallways walking back and forth and I did feel better aside from the surgical pain.

That day I quit taking the Oxycotin and also had cut the Dilaudid in half from 8mg down to 4mg. I knew I didn't need that much medicine anymore. I was right and was released from the hospital and went home the following day. At home I kept a active regiment of walking my neighborhood every day and still only taking the 4mg Dilaudid and Soma.

What I didn't realize was the years my nerves were pinched and the nerve damage it had caused as a result. Unfortunately, I was not able to completely come off the medicine but I didn't have to increase it and be put on more either. With the help of physical therapy right after surgery and having epidural injections it helped manage my pain.

6 months after surgery, I was able to pick up a bowling ball for the first time and also started shooting pool again too. Although I knew I would never be 100% again, I was well enough to return to my life as I had known it prior to the accidents. That was back in 2007.

Today, I have been doing well on the same regiment up until I started having severe symptoms and new symptoms I never ever had before. I reached a point I felt like I never had my surgeries the pain is that bad.

Just like I had done before, I went back to my physicians and they looked into it and ordered a updated MRI and bloodwork. I learned I have a disease called Tarlov Cysts in both my lumbar and thoracic spine. I have bilateral cysts in my S2 that measures 1.5cm or half a inch that is pinching the S1 and S2 nerve.

As I had done before, I went to multiple physicians to get their opinions and look at surgery. Now the cysts are interfering with me living my life as I had been doing this whole time since the ALIF surgery. To my horror I learned that surgery isn't that easy.

Multiple neurologist and neurosurgeons had explained to me there is a huge risk having surgery to drain the cysts because of the high probability of a spinal fluid leak and the high probability I would need more surgeries following to go back in to drain the cysts all over again because the cysts would fill back up with spinal fluid. The doctors also said the cysts can not be removed because it is part of the actual nerves its formed on.

My only option is to stay on pain medicine to manage the pain and have epidural injections. The epidural injections will ultimately cause the cysts to grow bigger.

Currently I'm taking Percocet-10mg, Zanaflex-4mg, Neurontin-600mg. Now I have had a bad flare up and unable to do many of the things currently I was doing before. My physician also just added Butran pain patch to my pain medicind regiment, in which I'm not happy about for the simple fact I don't want to be on anymore medicine. However, I also understand there really is no other option except suffer in horrible pain. My hope is my body will calm down soon and the pain will get better so I can return to my life just as before.

With all of this and my condition, I have also been lectured and criticized by loved ones about being on pain medication and called a addict even after explaining my current health condition. I do not understand how anyone could ever call me a addict after coming off so much of the medicine I was on before the surgeries I had. Now, I have a disease there is no cure for and surgery is too risky with high probability of complications with it if I choose to risk it in which I'm not ready at the moment to do.

How do you manage both your chronic pain and dealing with both family and friends who criticize you being on pain medication and called a addict?

What other trearments have helped you to manage your chronic pain?

Any suggestions would be greatly appreciated. Thank you for taking the time to read my story.

Best wishes,

Diamond Tiger<3
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Atticus (10-16-2020)

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Old 10-16-2020, 12:47 AM #2
Atticus Atticus is offline
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Atticus Atticus is offline
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Hey Diamond Tiger<3

Thanks for sharing your heartbreaking story. I don't have any solid advice I'm afraid (that's not like me!) but I take the following Turmeric based supplement. Curcumin is the isolated active ingredient. This has analgesic, anti inflammatory and general health boosting properties.

Turmeric & Black Pepper Tablets | High Strength 2,500mg | 95% Curcumin Supplement | 10mg Piperine from Black Pepper Extract.

I can't claim any wonder effects but its proven benefits at least make me feel I am doing something positive.

Pob Hwyl, as we say in Wales

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Diamond Tiger<3 (10-16-2020)
Old 10-16-2020, 10:47 PM #3
Diamond Tiger<3 Diamond Tiger<3 is offline
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Diamond Tiger<3 Diamond Tiger<3 is offline
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Thank you so much for the suggestion. I will definitely look into it. Anything that can possibly help with inflammation outside of prescription pills is great. My physician just prescribed me a second round of steroids to take. I was actually scheduled to have a epidural injection this week to help but it got canceled because of insurance refusing to pay for it.

Best wishes,

Diamond Tiger<3
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Old 11-20-2020, 02:01 PM #4
Diamond Tiger<3 Diamond Tiger<3 is offline
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Diamond Tiger<3 Diamond Tiger<3 is offline
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Update:

I recently went for a follow-up with one of my physicians. Ultimately, he had to increase one of my medications-Butran patch to help with the increased pain. I guess it was to be expected since he started me on the lowest dose to use along with Percocet. It seems to be helping. I was also given another new medication to help with the nerve pain also. I think it is helping.

Now, my husband is able to get up and move around on his own using a cane after having half of his spine fused when he fell and fractured his back. I know taking care of him for 4 months and having to push him around in a wheelchair or help lift him up as I had to do right after he fell on the floor. I don't know how I was able to lift him up off the floor giving the difference in size and weight gap. He is 6'5 and weighs 280. I stand only 5'3 and weigh 107 pounds. I get that is the main factor that caused the increase pain and also caused the cysts to grow in my back.
I'm hoping after a little bit more time goes by, I will be able to move around mych better as I had been doing before my husband fell. I'm hoping I will be able to take myself off the patch in the next few months too.

As far as family goes, I'm still dealing with the same crap. After having a long conversation with one of them, they insisted I'm addicted and just like them when they had to take pain medicine after having a knee replacement surgery. As I told her you can't compare the two, nor can you compare our bodies to each other because they are different.
She wanted to go ahead and make the assumption that because she became addicted to pain medications rhat I absolutely have to be too.
Guess what, I'm not! She went on to say that after she had stopped taking the pain medications she went through all of the withdrawal symptoms from it.
My husband automatically stood up and defended me and told her I have never had any of the withdrawal symptoms after coming off stronger medications or the dosage being lowered. Of course she was shocked. I'm sure, my husband was surprised by it too. Guess what, I did it a few times without any problems. There again to call me a addict or to suggest I am you would be wrong. Everyone's body is different just like mine is. I tend to fall into the rare category in many areas. Even if I didn't, nobody should ever be shamed for taking something that is prescribed by a physician that helps and makes your life better and able to enjoy more.

Best wishes,

Diamond Tiger<3
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Atticus (11-21-2020)
Old 11-20-2020, 02:09 PM #5
caroline2 caroline2 is online now
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caroline2 caroline2 is online now
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Pharma drugs don't do it for me...I live with plenty of chronic pain from hip repalcement damage to my whole right side of body and advancing osteoarthritis....

BUT, I work with all supplements and for reducing pain more, 1 ibuprofen and 1 extra strength tylenol ever 6 hrs.....and use stuff for stomach protection and always take with food.

A loved one spent 13 months in rehab for vicodin and other pharma drug addiction. A horrible time in her life...but she has turned her life around and will NOT touch a pharma drug.

And we both use HGH homeopathic gel and this has also changed our lives, she is 57 and I am 82.
__________________
OA onset at 18, now 81. Fibro onset at 61, Hip Replacement "mess" 72 (nerve damage, IT band damage, shorter leg). Otherwise, pretty good health.

Most important supplement: grape seed extract
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