4 replies to this topic

[AHolland]

This post is a result of a new member Libby who asked a few questions regarding theraputic massage for spinal cord people. I felt that it might be in the best interests to put the posts in the general forums rather than just returning the message to her in the hopes that it may help others in the same condition.

A few of the older members may remember that I suffer from some pretty horrible pain. When you get in a lot of pain it becomes almost the focus of your life to stop it. I have heard it said that chronic pain is like being a Prisoner Of War (POW) in a torture camp. I can't deny it either. Constant pain, every minute of every day. You can't sleep, you can't focus, you can't do much of anything. Each day you wake up facing the knowledge that you will have a lousy day and that will go on day after day after day with no end ever. You get grouchy, you take it out on the people around you. Your relationships erode and you want to kill yourself. Sound familiar? I hope not for your sake.

In the end you will do whatever it takes to stop the pain and thus begins the long and often fruitless trek to find some relief. Initially most people will try different drugs. Mixing and matching different combinations to reduce the pain. Often in SCI people that does not work because our nervous systems are too damaged. Dampening or dozing out the nerves does not work. It's funny but most of my pain comes from area's I cannot feel. To put it in perspective I have a completely severed spinal cord in the T3/4/5 area. That's around the armpit area. Below that area I have absolutely no sensation. Stick a knife in my leg and I would never feel it. On the other hand I have some screaming pain comming from that area that I cannot completely control.

My pain is called neuropathic pain meaning pain as a result of damage to the nerves. I can best explain it this way. A signal is sent from some body area. Something like my toes. The signal races up the nerve pathways and reaches the nerve freeway of the spinal cord. From there the pain should drive up the spinal cord until it reaches it's final destination, the brain. However, half way up the spinal cord freeway, the signal runs into a road closure. My spinal cord injury. The body is an amazing thing and even though the spinal cord is severed, it still wants to get the message to the brain. To that end, the message leaves the spinal cord freeway and travels by detour, up the secondary backroads of the nervous system. If pictured, our nervous system looks like a spiders web of nerves. All interconnecting but centering on the spinal cord. The message finally finds a back road and gets around the blocked or damaged area and gets back on the spinal cord and heads into the brain. At first glance you might think that it is a success. However, both in the time, the distance and distortion that is introduced by going around the blockage, the message no longer is interpreted properly by the brain. The signal may just have been degraded enough by the secondary roads that the signal is no longer normal. The brain does not know what the message is, but it does know that it has to bring the message to our attention. The best way to do that is to sound the alarms, ring the bells, scream and shout so we pay attention. Pain. Pain gets our attention really fast. My pain is bad. Really bad, and has cost me a large portion of the quality of my life. One of the central things in my life is looking for ways to reduce the pain and shut off those damned alarms.

I take pain killers including Fentanyl and hydromorph contin which unfortunately only take the edge off of the pain. I find, almost excessive heat, sometimes reduces the pain for a while. Certainly the cold increases my pain, as does stress and being tired. I have tried a number of different "herbs" including marijuana. Marijuana only acts to make me sleepy and in that I sort of forget the pain a little but then I cannot function at all. I have tried it both by smoking it, eating it, a pill form and oral spray form. Does'nt work for me unless I do it to the point of being unconcious.

I did spend a fair amount of time looking into getting a really good acupuncturist. I went around and around until the saem name kept comming up. My experience is that you do not always get relief from any source every time and you may have to try a course of medicine for a while in order for it to become effective, build up in your system, etc. For acupuncture I tried 7 sessions of an hour, over a period of a couple of months. Usually I had about 10 days between each session. I tired having the pins in my spinal area, head and the major pain areas: toes, hips, butt. In the end I cannot say it worked at all for me and I gave up. Will I try it again? Probably, as I cannot live with this pain and my search keeps going on.

Other things I have tried include different electro stimulation techniques: TENS, EMS, Interferential, etc. Basically these methods are different means of sending electronic signals into our bodies in order to stimulate the nerves, muscles or other areas. EMS is mostly for muscle stimulation and some of the best known uses of them are for the millions of "rippling abnominal muscles" ads we see on TV. Put some pads on, zap the body with an EMS device and presto we have those great stomach muscles we see on the beaches. Okay, don't get me going there. EMS may helps some peoples pain by exercising the muscles (contraction and relaxing, repeated). Not for me, but I can see a possible use for some people. TENS uses higher ferquencies and tends to have a bit better success for me. Enough that I use one periodically and even sell the devices to a few friends and family. I can go into it more if anyone sent me a message. Interferential also stimulates the inner body by electrical signals but usually these devices are expensive enough that they are only used in hospitals or medical clinics who do not think to use them for pain.

I gave out a number of techniques I have tried for pain so there can be some comparison to theraputic massage, the point of this post. In my hunt for some relief the pain clinic I was going to suggested that I try an appointment with a specific therapist the doctor himself used. I have been going to the massage clinic now for two years. Trust me when I say I try a technique and move on if there is no success after a reasonable time. I search and search for anything that will help me, and I cannot afford to waste my time an money on exercises of futility. Trials like the acupuncture, which I have medical coverage for, simply do not work for me. I think all techiques should be at least trialed by a person serious about pain relief. Just because it does not work for me does not mean it will not work for you.

The therapist I use has been in the buisness about 6-8 years. Not a seriously long time, but then she takes a serious interest in getting to know the patient and trying to understand what the problem is. When she is not available I have used some of the other therapists. I can say that I get benefit from the massage every time and from each of the different people, but my main therapist is much better than the rest. I use a one hour session covering my whole body. I start by the usual fight to get on the massage table. As I had said I am paralysed from the chest down and I have to muscle my body from my wheelchair up onto the table. Thank god I make transfer boards or it would never be possible. A transfer board is simply a plank of wood or plastic that helps you span from your wheelchair to the massage table. Saves falling on the floor and doing a seal imitation. I wish most massage tables could raise or lower but sadly that is rare. Once on the table I undress to my underwear and socks and lay down on my stomach. My massuse? is good about helping me not fall off the table at these times. I also need her help to lay down as I have no control over my stomach or side muscles and balance is a real issue.

She usually starts at my feet, working the arches, ankles and calves?. She usually plays around a bit and sees if she can trigger my muscles to twitch. I will have to ask her next time exactly what she is doing or how she feels the twitch. Basically she can tell if my muscles are still active. I know they are even though I cannot feel or activate them as my muscles are still fairly large after a decade of non use. That and when they spasm I can kick things. From there I am unsure if she works any muscles above the knee and below the lower back. I cannot turn around enough as a result of a titanium cage in my back that holds my upper back to the lower back (rivited to the back bone and reduces twist in the spine to zero in that area). I can tell that she does work the muscles in my lower back as it flexs my back in the point that I can feel. She works all the muscles up my back but does not spend an excessive time on the shoulders as one might think. She does do a little on the neck and often sort of pulls my head away from my body as if I am in traction.

Once this is done, I flip over with her help and she works on my chest and unfortunately also the armpit area. Sounds strange and she has almost made me scream for mercy. She finds that I have a bit of excessive growth of the muscles in the upper back. Probably from hunching over and wheeling the wheelchair. I also get shortened muscles in the armpit area. Maybe from not being able to rotate and reach backwards as much, which would stretch the muscle that runs from the front chest (boob) muscle to the shoulder muscle. Trying to be graphic so Libby will be able to picture the muscle. It's like we have two of these muscles. One on the front of our chest to the shoulder and a second on our back from the back muscle to the shoulder. Anyhow, she loves to pull my arms up above my head and then dig her fingers into that muscle to stretch it further. Hurts like a damn when she does that. I have considered to tell her to lay off a little but she once said that I had a much higher pain threshold than anyone else she knew and pride makes me grunt through it.... damned male pride.

Usually the massage results in instant pain relief. Some times more than others. It will always last a day, but usually lasts between 3-7 days. Unfortunately I only get them once a month because I have limited coverage and I cannot afford more. If I could, I would probably go every 10 days. How to describe the pain relief..... I think some of the pain relief is because my muscles get knotted up from muscling myself in and out of the chair or wheeling the chair around. My arms are everything and I use them for everything. Probably over doing it at time. How else can I sit up, unless I put an arm behind my back and push myself from laying to a sitting position. I work out at a special gym for the disabled so I can remain strong enough to use my arms for everything. I think she was able to beak down some of the scar tissue that typically builds up after trauma accidents. The pain relief does not take away all of my pain but it can be significant. It's good enough that there is no way that I will stop using it. I use it beyond what medical coverage I have even though my financial resources put me below the poverty level. Okay to be exact I make $11,000 taxable dollars a year. Medical coverage pay for about $350 for massage and I pay and additional $500 out of my own pocket. Pain utterly destroys my life and I will pay almost anything to end it. I will take pain relief over food. How's that for a comparison. The massage seems to relax my whole body. I usually feel tired after it. I think that by relieving the pain I can relax enough to know just how tired I am. Maybe it relaxes me enough that I can feel the "tired" which is covered up by the pain. At least I can usually sleep a bit better for a couple of nights. It's really hard for me to put an accurate finger on what pain relief I get and how to associate it with the massage. I go in tight. My neuropathic pain is really bad (see other posts on neuropathic pain/lyrica/neurotin I did today if you want to know what that is) but much much lower when I go out. I have no idea why the massage would affect neuropathic pain. In theory it should'nt, but it does.

I hope this gives you some information you are looking for Libby. I will check back, or you can send me a message, if you have more questions.

As a result of my Spinal Cord Injury (SCI) I am paralysed from the chest down. As I said I have no feeling below the armpit area.

[nipper123]

Thank you for such a great disciption of neuropathy pain and this is how I also feel 24/7 with Advance Adhesive Arachnoiditis jk. Although I can walk alittle but fall and fractures are a constant having had my spinal cord also torn during /after a simple laminectomy/discectomy people do not understand how you can feel this way. My meds also just take the edge off the pain and people look at me and say omg look at you your so skinny now, well to tell ya the truth I rather be a fat pig than the misery I go through every day. With arachnoiditis it strangles your spinal cord and instead of normal responses youu just get these terrible pain from head to toe. You loose your ability to walk and the incontenance comes around, it has even effected my eye sight which is now a big blurr. I presently do not have any insurance but am trying to get on a state policy so I may be able to get back into therapy with all my muscles going into athropy and I will check out massage therapy also. Again thank you for your post and I to know the feeling of wanting to shoot your brains out just to stop the pain, with my disease it is the only cure,

Nipper

[wheeliebear75]

I had it explained to me in terms of the cord for a stereo headset.......but I think yours is a better explanation. But the headphones cord works for younger kids because many of them have had headphones & they've also gotten a short in the wires. The message should go through clearly but with the "short" in the wires instead of music (normal functioning) you get static & that static is felt as pain & why it's so hard to move below the "short". But the back roads explains how it still gets to the brain.

TENS unit: sometimes helpful.......the best way I can explain how the TENS helps me is to overwhelm the area with the electricity......I feel the buzzing shocky feeling where the TENS pads are but what nerve pain is below gets somewhat diminished by the TENS.....but not totally. I have had a few AB friends try it on just for kicks & they said it was instant shocking pain just on #1 or #2.....and I usually crank that puppy up to 4 or 5. I wouldn't say that the TENS is a lack of pain......more like a trade.......with the TENS being the lesser of the 2 evils.

Rx: I've tried a lot of them & at least for me......I think they do more to just make me sleepy more than actually making the pain itself go away.

Meditation: Believe it or not it does help somewhat with the pain. It wont work though if you aren't proficient at it while not in pain. You have to be "GOOD at" meditation 1st.....and it does take a lot of practice & doing it regularly. I would actually suggest taking a yoga class......you don't have to contort yourself.....that is only ONE aspect of yoga. You can find yoga instructors who are more focused on the meditative side of yoga. What I find is that I can help myself relax by concentrating on JUST my breathing & I also like to go somewhere else in my mind's eye. What that means is using your mind to put yourself in a forest with the wild flowers & the pine trees or on the beach with the salt air & the warm sun........making my mind concentrate on other things such as those little details does help in regards to the anxiety of my pain. The thing about meditation as with any "remedy" or pain relief is to not let the pain get too out of control.....the more pain your body is in the harder it is to fight. And yes I know this can be difficult especially with those of us who are in constant pain......but we all have times where the pain is stronger or weaker.

I didn't have too much nerve pain at 1st it was only after a few years of that stupid John Wayne sort of gait I had that further damaged the peripheral nerves......THAT'S when the pain started becoming a real problem for me.

Edited by wheeliebear75, 05 November 2009 - 11:26 AM.

[EFSTA]

sorry for my ignorance

but how is a quad or para supposed to do yoga?

[wheeliebear75]

Yoga does NOT mean having to get yourself into a pretzel. You would have to find a yoga instructor who's teaching style is heavy on the meditation aspect of yoga. One of the aspects of yoga is to "get in tune with your body" I know often our bodies are playing some really awful tunes BUT this is where getting good at meditation when you are NOT in pain is the key to meditation being able to give you some relief when you are in pain. Much of Eastern medicine & things like yoga & martial arts all require meditation.......I guess I didn't explain that part very well. But I low-level para could still do some of the yoga exercises that target the abdominal muscles.