SCI & Nerve Pain

SCI & Nerve Pain

Posted by AskNurseLinda on Aug 10, 2015 9:45 am

Pain is experience by an estimated 81% of individuals with SCI. That is a huge number. The good thing to remember is that pain comes but it also goes. There are treatments that can help you deal with pain and even make it not a control factor in your life. There is a lot of information about pain and neurological injury and disease. I have written about it previously but there are so many questions about treatment that I thought it would be good to bring it up again, especially focusing on treatment.

There are several types of pain. Surgical pain is felt after an operation. It is treated with narcotics and then analgesics for a temporary period of time until the effects of the surgical pain resolve. Muscular pain is felt when muscles are over used from activity such as exercise or from pushing a chair or transferring from place to place. Muscular pain is also felt when an individual has paralysis. All of the muscles in the trunk and abdomen are used to hold up our bodies for activities such as sitting. When some of the muscles don’t work well, other muscles have to compensate which makes them tire quicker. Treatments include strengthening and rest. Analgesics can be taken for a short period of time until the muscles adapt to their new level of function.

The pain that concerns most individuals with paralysis is neuropathic pain which is pain due to miscommunication of the nerves as interpreted by the brain. Neuropathic pain can be a signal from a nerve below your level of injury that sends a pain message to the brain but it may not take the correct route. The route of the message could be disrupted because the myelin or insulation of the nerve is missing causing the signal to stray off of the nerve pathway or it could be a jumble in the area of damage of the nerve in the spinal cord or even misread by the brain especially if you have had a brain injury or stroke.

Treatment consists of various modalities and is often most successful with a combination of therapies.

The most overlooked treatment for pain is stretching, range of motion and exercise. Think about parts of your body with nerves that function well. Often you will hear people comment that they slept funny or got a cramp from sitting too long. This can happen after a nerve injury also but the body does not respond in the same way. Moving your body, doing pressure releases, turning, stretching, range of motion helps your muscles and joints stay limber without cramping. Just because a person does not feel a muscle cramp does not mean that you won’t get one. Movement is the first line of defense for everyone to avoid pain.

If you have the opportunity to use a standing frame or any of the activity based therapies, the repetitive movement is a great treatment to avoid the onset of pain as well as to relieve pain as it provides a workout for the nerves and muscles below the level of injury. This is a great stretching and movement exercise as the nerves and muscles of your body are actively doing the work of movement.

Your body wants to move so providing any sort of movement is an opportunity for the body to do what it wants and needs. Stretching, range of motion and exercise is often overlooked. Using these basic strategies is a good place to start.

Medications are another treatment for pain relief. When someone has extreme pain, they often think of narcotics because that is a strong medication. Unfortunately, narcotics don’t treat nerve pain. They dull the brain so it does not receive or interpret the pain message as well leading the individual to think that the narcotic is controlling the pain. In neuropathic pain, it is the nerve transmission where medication needs to work. Narcotics can dull your brain and lead to addiction issues but not control neuropathic pain.

Non-steroidal anti-inflammatory drugs (NSAIDS) are often overlooked for the treatment of neuropathic pain but they do affect it. I think they are overlooked because they are easy to get so people don’t feel they offer the treatment needed for such severe pain however, they have been demonstrated to have a good response to neurologic pain control. This classification of medication includes aspirin, ibuprofen and naproxen.

Other medications with success in treating neuropathic pain include antidepressants such as SSNRIs (selective serotonin norepinephrine reuptake inhibitors), venlafaxine and tricyclics (amitriptyline). These are taken at very low doses which affects neuropathic pain but not a large enough dose to treat depression. Some individuals who are treated for depression find their neuropathic pain resolved with treatment. If you do not have depression, you can manage neuropathic pain with extremely low doses of these medications.

Muscle relaxants and anti-spasticity medication can be tried as well as use of anesthetic cream applied just to one area where neuropathic pain persists. Some of these drugs are diazepam, baclofen, tizanidine and cyclobenzaprine. If your nerves are contracting your muscles pain can occur. These medications will relax your muscles and thereby reduce pain.

Two drugs work to treat neuropathic pain. These are the seizure medications, gabapentin (Neurontin) and pregabalin (Lyrica). Both are serious medications with possible severe side effects so you want to be well informed prior to taking either of these medications.

Surgery is another form of therapy that is used for neuropathic pain. Surgically implanted devices can be used to interrupt pain signals at the nerve root. This is called a dorsal column stimulator. It is implanted in the body close to the nerve root where the pain is being processed. A low intensity signal is transmitted which breaks the pain pathway to the brain.

Another surgical intervention is an intrathecal pump which is a catheter implanted in the spinal column (not in the spinal cord). Baclofen or baclofen and morphine are pumped into the spinal column to calm nerve impulses. The catheter is connected to a pump which is placed under the skin in the abdomen. It must be refilled by syringe on a regular basis to maintain the continuous therapy. The pump can be turned up or down by a trained health professional using a specialized magnet so you can have the dosage adjusted as your pain resolves.

These surgical interventions are used long term however, sometimes after several years, the pain cycle is permanently broken and the devices are turned off.

Neuropathic pain is a real problem but just like everyone, it can be aggravated by depression and stress. Having a neurologic injury or disease can be challenging to even the hardiest of individuals. If you are finding difficulty with your life situation, your pain can be affected.

Psychological treatment may help reduce your pain. You may find biofeedback and other stress reduction treatments may also help treat your neuropathic pain. Some individuals find relief through alternative and complementary therapies. If these work for you without adding complications, you should certainly use them. Your general state of health can also affect pain. Be sure to have regular checkups and treat health issues promptly.

Many individuals come into the clinic with back pain. After numerous tests, they find they have no identifiable problem. I always ask how long it has been since they got a new mattress or pillow. It is the same for individuals with paralysis: to examine their bed and seating surfaces as well as their mobility and exercise equipment. Our bodies are constantly changing. Worn out equipment or under or over inflated surfaces can make a difference in your pain levels. Ill-fitting exercise equipment or mobility equipment can lead to pain issues as well as skin and joint problems. Be sure to have all of your equipment checked.

Pain is an ongoing issue for many individuals in the community. Treatments that others have found successful may work for you or you might have a totally different solution. What works for one may or may not be the right treatment for another. When treating neuropathic pain, you have to use a trial approach to find the solution that works best for you. Some have advanced to high levels of medication and other treatments without finding success. Sometimes tapering off high level medications and starting with a simpler remedy works today when it did not work last month. This is shocking and does not seem possible but it is true for many individuals. We think we need more and more but bodies and pain are constantly changing. Simpler can be better. Keep at it. Keep moving. You will find the solution that is just right for you.

I'm online in this community every Wednesday from 8-9 PM ET to answer your SCI and paralysis related questions.

Leave a comment any time by clicking the reply button. Let's get the discussion going!

Nurse Linda

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Re: SCI & Nerve Pain

Posted by JohnT on Aug 12, 2015 7:56 pm

Hi Linda- Longtime reader, first time responder (constant stretcher). Thanks for all the great info. It has been really useful. I have a two-part question about SCI and Nerve Pain (one general, one specific). 1.) My nerve pain of a year and a half comes and goes and the kinds of symptoms can vary. It has been hard to try to indentify triggers (changes in meds., activity level, diet, stress, etc). Is it normal to have flare-ups? Are there things, in general, which make SCI nerve pain worse? SOme days I overdo it and I feel worse. Other days I do nothing and feel worse. Hard to find a pattern. Is there any way to tell if changes in nerve pain are the sign of improvement or decline?

Sorry that was three questions! But my second question is more specific to my situation: I have had little luck finding relief from the pain. I have tried various levels of gabapentin, tizandine and baclofan. On your advice, I have also tried various levels of ibuprofen. I have read with interest your advice about valium and also botox. Since my symptoms vary so much, it would be great to not have to be on "maintenance," or taking a drug every day even if I don't need it. In general I like to take as little as possible, and would like to know if I'm having a good (or bad) day "just because." The sedating effects, especially on a daily basis, well- they make me tired! Ideally, there would be something I could take (only) when I need it, and that is at least not TOO heavy from a sedative point of view. That may not exist- but any thoughts? Of the drugs I mention, the Botox route is the least sedating- and I have discussed it with my Neuros. I'll be reading up on venlafaxine and tricyclics. Don't think I want to go the route of dorsal column stimulators or intrathecal pumps. Haven't had much luck with topical creams, but HAVE found ice packs and a Hitachi "magic wand" massager on my spastic muscles very helpful.

SO... my long question/shortversion is: any advice?

Thanks again. Great resource,

Re: SCI & Nerve Pain

Posted by AskNurseLinda on Aug 12, 2015 8:28 pm

John, thanks for your question because what you write is quite the same story as most people with neuropathic pain. Finding the right answer for each individual is hard.

First, there are many theories about neuropathic pain. The pain is occurring because the nerves are active. Active nerves! Good news. Some believe that the activity is a sign that nerves are attempting to regenerate or at the very least, they are trying to find a route or pathway to the brain. Also, good news. Unfortunately, that connection is not quite there and that is the reason for the pain. It is hard to imagine but the pain is a good thing. It just needs to be controlled.

Second, you report no pattern to your pain. When I read your email, it seems that the pain is spasticity related. I don't know, perhaps I am reading too much into your email. Spasticity occurs without any pattern. You do stretching so that is a big help especially with spasticity. Your extremities can get cramps with or without SCI. If possible, can you try some of the activity based exercises? Standing engages the muscles of the legs. Repetitive movement can help move the muscles in a pattern which seems to help.

Medications can be effective but they do travel throughout the body so they don't just work in the leg but not the arm. That is unfortunate that you can't just take a pill to fix just the issue. Most of the medications that treat neuropathic pain do make you feel tired as they work in the brain, too. People develop a tolerance to the medications over time. The tiredness resolves as you become accustomed to the medication but this tolerance is a time when you might want to up the dose. The medications work by building a level in your blood. These particular medications won't work on an as needed basis.

Lastly, the surgical interventions are extreme but if you need them, they can be worth the risks. This is not a treatment that should be rushed to because it will not always be the solution. Once done, there is no going back so you really want to be sure before doing this.

Some people do have success with icing to numb the nerve area. The icing and wand massager have results for you which is great but I assume you don't or can't just stop your day to do those treatments. Topical creams do work for others but this is exactly the treatment issue, what works for some won't work for others. You clearly are on the road to finding a solution for you as you already have a lot of information about what is working for you and what is not. I wish there was an answer so I could say this is what you should do next but really it is trial and error. The important thing is that you have the knowledge and the ability to be able to work through this issue. Keep going and don't give up. I think your plan for your further treatment is solid. I am certain you will find what works for you. Please let me know your solution. I am certain you can reach your pain free goal. Nurse Linda

Re: SCI & Nerve Pain

Posted by JohnT on Aug 12, 2015 8:47 pm

Thanks Linda!

Re: SCI & Nerve Pain

Posted by Scott Conway on Aug 17, 2015 4:22 pm

Thanks Nurse Linda for your post on this topic, I found your comments on movement "spot on."  I'm recovering from transverse myelitis and movement/physical exercise is my number one method of pushing for more neuro-recovery and pain management.  I work out 5-6 days per week, I'm in a yoga class with my wife two times a week, I take ice water baths 4-5 times per week and get a massage 3-4 times a month.  I feel the worst when I'm sitting at work, so I try not to stay seated for more than 15 minutes - I use a wireless headset for my phone (walk and talk) and I have a standing workstation next to my desk.  When I'm seated my legs burn more, especially what part of my legs are in contact with the chair.  Everyone in my company understands why I stand up frequently during meetings.  I've also started working with one of the psychologists at Frazier Rehab learning how to turn off my constant thoughts/analyzing how my legs feel - learning how to "be in the moment" (mindful) and compartmentalize my worries. 

It seems at times that my nerve pain is increasing and moves around...I've been told this is a good thing as you mentioned in your response to John T.  And like John T, I've tried various levels of Neurontin (only take one 300mg pill at night now) and Tylenol or Ibuprofen as needed.  My first year after SCI diagnosis I took Mobic every day, but I might take one of these a month now.  My doctor has mentioned that I might have to take more Neurontin if more neuro-recovery means more pain - of course I would rather this not be my first option, and is one of the reasons I've been trying all the other things previously mentioned. 

In your response to John T, you also mentioned spasticity - which I have especially when waking up in the morning or standing up when I've been seated for longer than 15-20 minutes. Standing up and taking my first step might take 5-10 seconds to get connected and work out that first spasm in my legs (I tell people it's like putting a truck in gear with a manual transmission...push in the clutch and get it in first gear).  However, it does seem that I've had some positive benefits for my spasticity from being on Baclofen.  This was actually prescribed by my urologist, thinking it might help relax the bladder spincter and help with voiding - and I'm seeing some progress in this area.  BUT, my wife immediately saw benefits at night while sleeping - she claims my legs are not as restless once I started taking Baclofen.

Finally, the only time I feel zero neuropathic pain is when I'm taking an ice bath (one large bag of ice in water up to my belly button/low back).  My lesion goes from T4 to T9 (nipples to belly button) so I don't feel the cold water.  I stay in the ice water for at least 10 minutes and then drain the tub and sit in warm water for another 10 minutes.  When I get out of the tub I typically feel better and move better. 

I was blessed to be able to move from wheel chair, to walker, to trekking poles and then no assistive devices in a short amount of time - and my mindset on working out/exercise is certainly different now...I'm thankful that I "get to" exercise.

Thanks for your article on this topic!  Since November 2013, I've certainly learned what patience and process are all about :)


Re: SCI & Nerve Pain

Posted by AskNurseLinda on Aug 17, 2015 4:39 pm

Scott, it is wonderful to hear about your recovery. I am sure your story is helpful to other readers. It is amazing what extreme lengths you had to try to get to a point of comfort but you stuck with it and are doing it. Your treatments are not for everyone but you are a testimonial to the trial and error process. That is a lot of effort to reach a great success.  Nurse Linda

Re: SCI & Nerve Pain

Posted by Cheryl B on Mar 16, 2016 11:34 am

my son has been in constant pain/extreme spasticity for 5 months triggered by biomedical trial started last July.  initially outstanding results but since mid october things flipped.  nothing has been effective in reducing symptoms including PT, extensive pharma, botox, ganglian nerve block...have you heard of ketamine infusions?  what do you know and do you recommend...any other thought deeply son is literally howling in agony right now...this cannot go on...deeply impacting his psychology, as well.  thak you for any insight Cheyly Bianchi 818.738.8623

Re: SCI & Nerve Pain

Posted by AskNurseLinda on Mar 16, 2016 11:57 am

Dear Cheryl, I am just devastated to read your email. Have you contacted the Principle Investigator for the trial? That should be your first line of help. In the consent form, there will be listed a name to contact should you not receive an acceptable response from the PI. Ethically, they are responsible for treatment if this is a direct result of the trial.

Since, I do not know what trial he was in, nor would I be able to get the details, it is not possible for me to be able to say if the ketamine infusion would be helpful. It is a very serious treatment with potential side effects. Ketamine is used for a few conditions one being complex regional pain syndrome. If this is what your son has, you would need a specialist who treats this particular issue. There are other treatments for this condition so finding someone particularly knowledgeable would be to your son's benefit. Ketamine infusion is also used for the treatment of depression.

First I would recommend contacting the Principle Investigator of the study. There should be a plan in the study for treatment of complications that are appropriate to the investigational treatment. You should not have to find the appropriate treatment which should be already established by the investigator. Be persistent. You are already on this and serving your son well by being a good advocate. Nurse Linda

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