Category Archives: nerve pain
Tonight marks the seventh day I’ve been completely free of any tramadol. The peak of withdrawal for me was this past Friday night. I woke up with sweats, jerking muscles that were cramping, I puked a few times, I had an excruciating headache, and once I got out of bed the panic set in. I was up all night. I could not stay asleep. When I did sleep it was in increments of thirty minutes. It was a very rough night. That next morning, I began to wonder if I needed to enter a detox facility. It was that bad. As the day went on I was exhausted but as I kept focused on music, and moving around it got easier. I am now on day eight and all the withdrawal symptoms have departed!
I feel pretty good considering all my physical infirmities. My nerve tumor pain is high part of the day, but I manage through it here at home. I had a very successful day yesterday. Yesterday I was able to go out to a doctor’s appointment, make a grocery store trip, make a Walgreens stop, make a stop at the gas station, and do my dishes at the sink! This might sound trivial to some of my readers, but for me, that is extraordinary while only being on naproxen 500mg.
I have noticed a few changes since detoxing from the tramadol too. I have been struggling with severe fatigue for years now and concentration problems. I always walked around feeling foggy, and so fatigued I could barely hold my head up most days. This last week I noticed that the foggy feeling has subsided completely. I think more clearly. I believe the tramadol must have contributed to that cloudy thinking. The fatigue I felt was probably intensified by the tramadol as well. I am still tired in the middle of the day but it isn’t nearly as bad as it was while I was taking the tramadol.
I don’t see my pain clinic until the 24th, but when I do they will have to come up with another plan for my case. I am rejecting to be treated any longer with any type of narcotic, or any type of pain treatment that my body will become dependent on, that if I choose to stop taking it, I have to deal with withdrawals like I had to face with tramadol. There has to be a better way to deal with pain patients. There has to be a way to help us without turning us into pill addicts, or physical addicts. They’re doctors who work hard to get these special degrees. They should be smart enough to figure this out.
I strongly believe marijuana should be utilized in this area. If marijuana was utilized for chronic pain patients, it would prevent addiction across the board. Science shows that cannabis is promising for pain relief. “Science also shows that addiction is very low at only 30% likely to have a dependency problem and that the 30% who develop dependency are people who have psychiatric issues before use” (Hasin).
It is time that our nation takes the stigma that surrounds cannabis and completely remove it. We must begin taking rational steps in solving problems we face with addiction to opiates and other opiate type medicine, like tramadol. Cannabis is one logical step! We must begin taking logical steps in treating chronic pain patients and stop imagining they do not exist, that they do not matter, or that their quality of life is not just as important as any other patient treated in our nation. Cannabis would help so many avoid opiate addiction, it would help improve the quality of so many lives across our nation, and it would be affordable to them. If the Obama administration is serious about this new initiative to help fight opiate addiction, he will move to help legalize cannabis nationwide on the federal level for medical use with a proposed bill to congress before he leaves office. The ball is in your court Obama. Help us, not the prescription thugs!!
Hasin DS, Saha TD, Kerridge BT, et al. Prevalence of Marijuana Use Disorders in the United States Between 2001-2002 and 2012-2013. JAMA Psychiatry. 2015;72(12):1235-1242. doi:10.1001/jamapsychiatry.2015.1858.
I have been a chronic pain patient since my first back surgery in 2005. A little background: In 2005 I became unable to walk. Neurologists found a nerve tumor in my S1, L5 nerve root which was located next to the spine. The doctors also found a tarlov cyst directly next to that nerve tumor in the same scan. This was when my life changed forever. This was also when my first relapse back into opiate drug abuse would enter my life again, in a few years that followed the surgery I had, in attempts to remove the nerve tumor and to drain the tarlov cyst. For some of my readers this information is not new information. I don’t want any readers lost however so that little bit of background information is imperative to have. Fast forward to my trip to the Mayo Clinic. I cleaned myself up from using opiates. My pain was unbearable. I could barely walk, I still couldn’t drive and I was unable to work.
I reached out to the top neurology team at the Mayo Clinic in Rochester, Minnesota in hopes that they could tell me there was a surgery that could be done there to fix me so that I could no longer depend on pain meds. I wanted to go back to work, to drive again, and walk again like a normal woman! They were the best in the nation so if anyone could fix me I knew it would be them. I went through a series of scans, and tests. The results were heartbreaking.
The visit left me helpless and permanently disabled with no hope. The team of doctors typed up a report that informed me that there was no surgical fix to my specific case which was so rare that only two people in the United States have the type of non-cancerous nerve tumor I have. They explained that because my nerve had braided itself around the tumor that removing the tumor from the nerve (sciatic nerve) it would leave me with no use of my right extremities, with no control of the bowel and bladder functions so it was best that I seek out a pain clinic to help me manage the nerve pain. The report included an EMG result which showed the previous surgery I had in 2005 left me with nerve damage in the right foot which had not regenerated or repaired itself. They referred me to MAPS.
Fast forward to 2011. MAPS tries to convince me to have a medicine pump implanted into my back and I strongly object. I start out with receiving injections of a cocktail of steroids and pain medicine. Epidural injections, and a few others. They work wonders! I start walking without a cane more often. I start doing physical therapy for a while in a heated tub. There appears to be a light at the end of the tunnel. Well, the insurance must have seen this light! The light suddenly gets smashed! The insurance suddenly starts denying payment and approval for these injections. I am now faced with the decision to either live with the excruciating nerve pain and go back to not walking most days or allow MAPS to medicate me. During this time also they opted to put me into a trial for an implanted device called a neurostimulator for the nerve. The trial was amazing and it worked so I got a surgery in 2011 to have the device implanted into my back. The machine got me back to walking but it did not get rid of all of my nerve pain so I needed a nerve agent to help with pain. The taste I got back of the freedom I lost for so many years I was quick to choose medications with strict rules. I told the doctors I refuse to go on any opiate based medications. I did not want to be on any addictive prescription.
The PA in charge of my case at the time (2011-2012) throws out the medication name tramadol. She asked me if I have ever heard of it and I said no. She continued to tell me that it was fairly new to the market, which I now know was a bold face lie, she tells me it wasn’t an opiate but an anesthesia base medicine that works well with nerve pain and she thought it matched well with my case. She said it showed no addiction properties in all studies done and no signs of abuse in studies. She told me that people shown to do very well on a very low dose. I was excited to hear all this positive stuff. It wasn’t an opiate, it was going to work on my nerve pain, it wasn’t risky, so I did what any person would do in my situation, I said sign me up! What a huge mistake!!
The first time I realized that tramadol was actually highly physically addictive was when the clinic left me in a situation where I actually ran out of my medicine in early 2015 (I believe it was 2015 or may have been late 2014). I found out the hard way. I had no warnings and it came out of left field. No one ever informed me the pill would throw me into withdrawals! I went without my meds for two days and when I called the clinic they called in my prescription. This was before a law prevented them from calling in scripts over the phone, and this was before tramadol’s drug schedule was changed. When I called the clinic for the refill and explained to them I thought I was actually going through withdrawals they acted like they did not believe me but called in the script anyway. Fast forward to 2016.
This is the second time the clinic has left me in a position where I am dry of my tramadol. Due to a new law they have to do face to face every three months, the patient has to pee in a cup for drug tests, and they are not allowed to send scripts to Walgreens until those requirements are met. Making an appointment to line up with your med count is damn near impossible because they only can schedule so far out in the month, they book up extremely fast, a working mother, and a full time student that makes things even harder. I made a decision that I am NOT going back on the tramadol. I don’t care how bad the nerve pain gets. They will have to find another way to treat it. The withdrawals have been a nightmare!
I knew I was going to run out before my appointment on the 24th of this month so I started tapering off immediately weeks ago. I am on day two of absolutely no tramadol. Yesterday was the worst! My entire body feels like my nerve endings are sending continual shocks throughout nonstop. I sweat profusely, and then shake with chills. I feel very anxious! I have twitches and I can’t seem to sit still for very long. Moving around helps. I paced a lot yesterday, today it is a little better but still have to move a lot. Music seems to help keep my brain focused at least on something other than the anxiety it feels of not having the drug. I’ve been utilizing my heating pads to help with pain. I’m glad my semester ended! I feel pins and needles in my fingers and toes constantly since I started tapering the tramadol and it has only gotten worse since I’ve gone down to no tramadol at all. I have this strange feeling in my brain I can’t quite explain that started yesterday. It is like I am on the verge of paranoia and fogginess…like I think something is there or feel something is there but I’m logical enough to know there isn’t. It is hard to explain. I have a very heavy ringing in my ears. I haven’t been able to sleep except in small increments of 30 minutes. Last night was terrible! I tossed and turned all night and woke up soaked with sweat and had to shower immediately. I have NEVER had that happen, even with the flu!!! My muscles have been cramping. I am very emotional too! I cry one minute and am very angry the next. You don’t want to know about the bathroom stuff…I know that is only going to get worse by day three…my stomach cramps now, it just started actually. I feel nauseous. I had actually decided to quit smoking a few days ago. That was a bad idea. I know that sounds stupid but it was. I had to go buy a pack of smokes because nicotine withdrawal on top of tramadol nicotine was too much for my brain. The nicotine has actually helped ease some of the brain anxiety at least. I still feel very anxious. This shit is scary…. I’m not exaggerating.
I spent a lot of today reading about this wicked poison tramadol. I cried actually at some of the stories I read. I know some of the emotional stuff is the tramadol withdrawal but the stories were sad, scary, and infuriating too. I was so angry I wasn’t told about the addictive nature of this pill from my clinic. I was angry that here I am AGAIN a fucking addict! This time both of my kids are seeing me suffer through this nightmare. Not the same kind of addict I was in the past but nonetheless an addict. A PHYSICAL ADDICT that this clinic created. I was someone who needed help and now I need even more help than when I first began! Why can’t they just let me use fucking weed, FOR REAL now! I don’t fucking get it. I don’t understand it!!!!! It infuriates me. My life is hell right now. I remember cleaning myself off opium…no fun…I remember cleaning myself off the opiates…worse than the opium…. coming off this tramadol of five years…a FUCKING NIGHTMARE I wouldn’t wish on anyone…I know this is just the beginning too. It is going to get worse before it gets easier. My brain and body is going to go ape shit crazy in a week when my pain has nothing to ease it and the brain doesn’t know what to do with the signals because for five years it slept while a drug did its job…I’m pretty scared actually…I’m taking naproxen 500 mg to help with my pain and I do have some left over lidoderm patches if nerve pain gets out of hand to hold me over a few weeks. My main concern is getting my brain trained again to deal with signals being sent and levels of serotonin and all the chemicals that that tramadol screwed with for five years…I wonder how long that is going to take?
It says here, https://www.addictioncenter.com/painkillers/tramadol/withdrawal-detox/ that, “In response, the brain adapts to the constant presence of the drug and adjusts chemically. Because of the influx of tramadol, the brain attempts to self regulate by speeding up and slowing down some of its processes. When the user suddenly stops taking the drug, the brain goes into “overdrive,” causing moderate to severe withdrawal symptoms” (addictioncenter). The timeline below from the AddictionCenter webpage is just for withdrawal symptoms not how long the brain takes to be normal again chemically. I guess I have a rough two weeks ahead of me….
|Days 1-3||Onset of general withdrawal symptoms, including feelings of pins and needles, sweating, nervousness, nausea, anxiety, palpitations, insomnia and drug cravings.|
|Days 4-7||Drug cravings persist, along with insomnia, disorientation and confusion, and blurred vision.|
|Days 8-14||Symptoms should be fairly mild by this point. Depression, anxiety, and irrational thoughts may persist.|
I want to talk about being sick and a recovering addict today.
Let’s talk about being sick first. I just recently had a rheumatoid doctor diagnose me with Anklyosing Spondylitis (A.S) and well though we have thought for a long time I’ve had this disease we waited as long as we could to medicate me with immune suppressants. I came to a point in the disease I had no other choice but to start on humira. It is an injection I take every two weeks. I give it to myself now.
I was waking up so stiff I needed help to get out of bed when I finally went to doctor for medication for the disease. It became horrible. I have been on humira since May of 2013. I have noticed considerable change in my body with the medicine. It has been such a change that I wish I had gone on the humira sooner then what I decided. I avoided the medicine out of fear that it suppresses the immune system. I am still concerned about it making me sick with cancer, or flu like stuff one day but the relief I have received thus far is worth the risk.
I have so many health issues. It wears me out. It is exhausting being so sick with so many problems. None of which have a cure either! It is a daily battle for me to get out of bed and carry on my day as normally as I can to fit in to society. Some days I just hold myself up at home because that is all I can do those days. I have a tarlov cyst that is a constant source of pain. I have a neuroma that is a constant source of nerve pain, burning sensations, and fatigue. I have fibromyalgia which has become a nightmare of burning muscles, weak muscles, over active sensory problems like over sensitive to light, sun, noise, smells, and motion. Now on top of those things I have A.S. Which is a progressive arthritis of the spine and joints. The A.S leaves me fatigued, pain in the back, knees, elbows, feet, hips, neck and lower back. It is so damn exhausting!
There have been many nights I have thought about ending it all. To be honest the only thing that keeps me around are my beautiful daughters. I love them so much. I love being their mom. They are why I live. I know it is sad to read that I am suicidal and probably makes you wonder how stable am I to even think these things…well it might not be normal to think about ending it for you…but I know living with chronic pain the way I do makes it very normal. I am not a risk to myself because I have found something to live for even in the darkest hour of my pain, illness and fatigue. My kids. I have not found a way to stop the ideas from creeping into my thoughts at times but I don’t act on them. I don’t think I ever would for a few reasons. The biggest being my wonderful daughters. The second is my faith in Christ. I know I suffer these ailments for a reason. I am not sure the reason yet in my life but when it is all said and done it will be clear why I had to live my life the way he chose. The final reason are the friends I have today. The support they have for me is like coming up for fresh air in the middle of an ocean.
I try very hard to stay positive. I wake up and tell myself something positive and remind myself through the day that I have so much to be thankful for so do not focus on the pain. Some days this is so hard to do…some days I am so tired from fighting against the pain that I have no energy left for anything and that to breathe takes everything left in me.
Living a life like mine isn’t easy. It doesn’t help when you don’t get support or understanding from those around you either. I know I have had friends think I didn’t care for them as much as I say because I don’t hang out with them often. I don’t call them a lot. I am not sure what to do about that. My energy reserve is very low and most of what I do have has to go to my two kids first. Usually I have none left to share with anyone. When I am working it is even worse. Hell my kids then get very little of my time. I work, cook dinner and go right to bed only to repeat this same routine five days a week. I get a summer vacation when school is out so that is a nice break for me. The summer break allows my kids to get more of my time and energy. Unfortunately my friends do not.
Is that fair? No I don’t think it is. I only know that I can’t change the way I feel. I take one day at a time. I hope I have friends now that understand this part of me and know I do love them regardless of the time we spend together. I have lost lots of friends over the years because I am sick. They got pissed off I couldn’t do what they wanted me to do and quit talking to me. The friends I have lost I know now were just users. They were only my friend because I could do something for them at the time. When it came down to the point in my life I couldn’t help them they weren’t interested. Sure, it hurts to lose friends in the moment, but as I have had time pass I have come to realize they were really never friends. They were what I call users. We all have these in our lives at some point. Some hang on to them longer then they should if you ask my opinion.
Anger is a huge issue I have. I fight the anger demon daily too. I get so pissed off at my circumstance. It eventually leads to loneliness. I feel angry that I’m sick and can’t do the great things I want to do then I end up feeling lonely because I realize in this battle I am truly alone. I am the one who has to walk with the pain, sleep with the pain, wake with the pain and no one knows this but me. It gets hard for those around me to understand because I don’t look sick. I look like a vibrant 35 year old woman but my looks deceive you.
The pain is a third wheel in all my relationships. It gets pretty damn exhausting carrying this wheel around everywhere I go. It interferes with friendships, my marriage, my relationship with my children, hell it even interferes with my own self on a daily basis. It is crazy I have to wake up every single day and have a plan on what I will spend my energy on. I have some energy for a shower, some energy for my kids, some energy for cooking dinner, doing laundry that day, and energy to give to my husband when he gets off work. Hell most of the time I have NONE when he gets home and it is very frustrating. It gets even more frustrating when he doesn’t seem to grasp understanding of what all is wrong with me.
I am also a recovering addict. The health shit I carry around interferes with my sobriety on a daily basis. I am an opium addict. I became an opium addict in 1995. I left home to clean myself up in 1999. I have had one relapse in sobriety and that was in 2006 after my first back surgery when a doctor put me on Oxycontin. I abused the pills for about a year and in 2007 I went cold turkey again and have battled everyday since to stay clean. The Oxycotin battle went well into 2011. My addiction did not start with pills though. My addiction started with smoking it in a pipe. I think about opium every single day at least once. I think about how numb it makes you and how you feel no pain on it. I think to myself often if I could just smoke a pipe of opium I’d have no pain at all and could be normal…being a chronic pain patient makes being a recovering addict even harder to do.
Right now I wish I was high. If I were high right now I wouldn’t feel the pain in my lower back, my hands wouldn’t be aching, and my neck and shoulders would be completely relaxed. These are just some things I think about on a daily basis. What stops me from acting on these thoughts? Well simple….my kids. Again they are the reason I try to be a role model. I want them to have the best life possible and grow into responsible, caring, normal adults and that requires me to stay clean.
I am very fortunate. I know many addicts don’t get away from the grasp of opiates. Hell most end up heroin addicts. I know this. I’ve lost friends to this trend of opiate abuse that lead them to heroin. If I had not left home when I did I probably would have been led to heroin too. I would have used it to medicate my pain away and would have ended up strung out on it and eventually killing myself. I know this without a doubt. I know once you do heroin it grips so tightly that it is a miracle to get away from it. I take one day at a time.
I avoid opiate users. I have had doctors note my medical file to avoid long term prescriptions and if ever prescribed it must be very small amount and there must be no other options. I am glad I was educated enough at the time I left my hometown that I knew to have a successful shot at staying clean you had to change your entire life scene. That is what I did and I think that is why I was successful in getting clean and staying clean for so long. I honestly think I would not have relapsed at all had I not been put on Oxycontin for pain. These things happened for a reason. I am not 100% sure the reason but I know Christ has one. Maybe it was to make me a better mother then what I would have been had I not done these drugs. Maybe it was to show others that it can be done. YOU CAN GET CLEAN and stay that way. Maybe I became an addict because I was suppose to leave my hometown so I could have a shot at a better life. I don’t know. All I know is I am thankful. Even when I wake angry about it, even when I feel so lonely in it all, even when I think that things would be better if I ended it, I end up where I belong. I end up being thankful and remembering why I carry on. I remember how I cleaned myself up and understand that in itself is a remarkable feat.
I know having chronic pain for the rest of my life is not going to be easy. It hasn’t been easy yet. I know living with my pain leaves me very vulnerable to relapsing again. These things I make sure I don’t forget. It keeps me vigilant against the monster lurking just around the corner in a pill bottle, a pipe, or powder. I take one day at a time and pray often. I love my friends that understand my problems and are there to support me when I need them. I love them for understanding that even if I can’t hang with them often I think of them often. They are the other reason I stay clean and carry on.
Everyone has their own story to tell. Everyone has their own struggle to fight. This is just a piece of mine. Thank you for reading. It felt good to let it out.
I finally had a neurostimulator surgically put into my back to stop the nerve pain down my legs. The pain was so bad I could barely walk anymore. I looked all over for someone to help me. It took the mayo clinic to put it frankly to me about my situation. They told me bluntly that there is no surgical fix to my problems and that I’m looking for something that isn’t going to be found. They said the best advice I could take is search out a pain clinic and see what can be done to manage my pain.
I did just that! MAPS were the place where I’d find my ability to walk again with no more nerve pain shooting down my legs! After trying injections with no long-term success in stopping the nerve pain my last two options were laid out on the table for me. The first choice was a morphine pump, which I was not going to take no matter what. The second choice was a neurostimulator that would surgically put into my back that would trick my brain in receiving tingling sensations before the pain single was sent. I had low hopes.
They set me up for a trial to see if it would be successful. I was set up for a week to see how it would work. It was FABOULOUS! I couldn’t wait to get it permanently put in! After trial was a success we set up the surgery date for it to be put in. It was done in February of this year. Since the implant I can walk now with no nerve pain. I can sit for longer periods of time without having to get up every ten minutes due to pain. I am still limited in many ways but at least the nerve pain is completely gone now.
The implant should last five to six years. A normal implant would last up to ten years, however, I have to have mine on 24 hours a day, 7 days a week so that takes battery life off of machine and how long it could last for me. I am very pleased with the results of this implant. Technology is amazing and by the grace of God I can walk again! The machine also helped me eliminate many meds I was taking. I went from 12 prescriptions to TWO!!
I would recommend this option to others who have neuropathy, sciatic nerve problems, or any other nerve pain.