Can anyone relate?

[Mimih321]

Hi,

I am so glad to have found this site. About 4 years ago, I had an episode of transverse myelitis, mistakenly diagnosed as MS. In the beginning, I had pins and needles in my feet spreading upward until I felt as if my whole torso was wrapped in an ace bandage and my legs had painful electrical feelings if I touched them. I also had extreme weakness in my legs and couldn't even walk across the street.

Now, my strength is back, thank God, but I still have electrical feelings in my legs. But the worst symptom is that when I wear shoes that are not sandals, they feel like they are 2 sizes too small. Agonizing. And even if I wear sandals, after awhile of walking, my feet feel as if they are blocks of wood instead of feet or I am walking on a hard brush. Or like they are asleep, even though they are not numb. It's very hard to explain, but I was wondering if anyone else experienced this kind of pain?

I feel as if I have no right to complain because I am so grateful that I can walk. And I know that others with TM have not been as fortunate. But I would love to be able to wear regular shoes again and not be in pain - especially living in Seattle where it rains so much. I don't know why the pain is less when I wear sandals. Also, I have to wear light socks with my sandals or my feet feel as if something is prickling them all over - abnormally sensitive. Very painful. This is also weird because my socks can't be too tight either. Body cream is my best friend. It's almost as if the cream coats the nerve endings and calms down the pain.

Sorry to go on and on. But does anyone understand what I am talking about or feel something similar?

Thanks,
Mimi

[Lee555]

So what sort of meds are you on now? If you've mentioned this recently, I;ve totally forgotten. :)

[rollin64]

So what sort of meds are you on now? If you've mentioned this recently, I;ve totally forgotten. :)

same here....update, please. :D

[Mimih321]

Thanks for answering. Actually not much medication. I first tried neurontin but it did nothing at the doses I could tolerate that didn't turn me into a mental vegetable. I would do stuff like turn on the oven and then forget why. Then my neuro wanted me to try lyrica, but I'm scared of it because of the rash.

So now I just take 300 mg of neurontin at bedtime a few times a week because it makes me sleep so well and deep. If I take it more than a few times a week, it loses effectiveness. Basically, it's a sleeping pill for me. Do you have any ideas? I am very scared of side effects. I was considering getting a prescription for elavil, but I have had abnormal heart rhythms in the past and that's one of the side effects. It gets pretty depressing as I'm sure most everyone here knows.
Thanks

[betheny]

Interesting that you say it feels like standing on a hard brush. That is one of my analogies, too. Like standing on a stiff wire brush like you use to scrape old paint off. Owwww. I have to wrap my lower legs in ace bandages at night when my Graves disease flares up. The odd thing is that it is sort of soothing. You might try it. Put cream on (I have to use steroid cream), wrap in Saran wrap, then wrap with ace bandages. When they are bad I leave them wrapped during the day and wear Uggs over the whole mess.

[carosteelmagnolia]

I was diagnosed with TM 5+years ago. I have sensations very similar to those you describe. I do not take any prescription medications. I have had very gradual improvement throughout the five years. However, the past few months, as numbness continues to decrease, my feet have become increasingly uncomfortable and I believe spasticity in legs is worse; knees are painful also. I am hoping that these difficulties will lessen and pass, like MANY other odd stages of this experience have done. I can go only 3 or 4 steps without using a walker, which helps balance and allows me to not be totally weighbearing at all times.

I wear only Reebok princess aerobic shoes or Easy Spirit Motion walking shoes, with fairly thick socks. I cannot tolerate anything across the top of my foot. I sympathize with the limited tolerance for footwear.

As others have noted, it is difficult also, because we look mostly "just fine." Others cannot imagine the determination each step requires of us, and what we live with 24/7.

[Mimih321]

Thanks for relating, although I wish none of you had to. I find it very encouraging Carol that you kept getting improvement for 5 years. My doc told me that after 3, there would be little chance for improvement. But you've proved him wrong.

I also get the spacticity, but I call it muscle cramps. It is so agonizing, if it's what you are describing. Sometimes it will happen in weird places like the font of my ankle and it will take 10 minutes of terrible pain and moving in different positions until it relaxes. When it's over, my teeth are chattering from the pain. But what has helped with this is practicing a relaxation healing meditation called qigong. After happening almost every day for weeks, it has stopped to maybe once every few weeks now. I hope this isn't just a coincidence and it stays away. Good luck and I hope you keep improving. And to Betheny, I hope the brush softens!

[dejerine]

Mimi,

Transverse myelitis is not as common as post SCI central pain, so it is very interesting to read your descriptions. Many of them resemble post spinal cord injury CP, and syrinx realted CP. In my own case the electric shocks diminished over many years. You do not describe any burning, which is the most severe part for me by a long shot, but it has not changed at all. Many I have corresponded with seem to have found medication which helps the pins and needles (brush), so maybe you can start on the wild goose chase to see if anything actually helps. For me, weighing the side effects, klonopin has been the best. All the meds have side effects. Klonopin is said to cause sore muscles, but I had very intense muscle pains before the Klonopin so I cannot say it has done that. Lyrica makes many feel loopy. The posts here are as good as you will find on side effects, but don't expect any consistency. It is just too individualized.

I am quite interested in your descriptions of your TM central pain. If you have the inclination, I for one would enjoy a further description of them. How often do they occur. Which are the worst. etc.

[Lee555]

I have been dx'd with amazingly, chronic hyperventilation. Oh yeah, it has done terrible things to me. Gave me stiff muscles, cramping, spasticity, muscle spasms, all the stuff that made it appear like a spinal cord issue. Now I may have damaged my control center for respiration with the hypoxic conditions because now I am suffering from sleep apnea and I beleive during my waking hours, shallow breathing. This has damaged my muscles for sure. Anyway, dejerine is right, the Klonopin is what the Pain doctor gave me second, the first was a beta blocker Inderal, to control my fast heart rate, which also unstiffened my muscles for a time. It has to do with your adrenaline and how your body reacts to it with pain. Specially if your CNS is messed up. You have to watch what drugs you take if your situation is like this. The SSRI's will increase the norepinephrine (make you agitated, nervous, etc.) if this is your problem. Cold meds are another one, and certain antihistamines. It was suggested to me to use Zyrtec for my summer heat hives.

The other thing I have been given is Lorazepam, which is another benzo, but longer acting on the anxiety side. I still take the Klonopin, but I was looking at having to increase this if I wasn't getting the Lorazepam.

I got to say, that when I start getting pain, it is so diffuse that it seems that every cell in my body starts to ache. There are no pins and needles, maybe a few spasms will start in my chest, back and torso, but the worst is what comes into my brain, the signals I guess you might say. At that point my muscles start to slow down, the messages don't seem to be getting through, and I think if I didn't take the meds, and could stand the pain, I would simply come to a standstill, frozen. Hell, it even affects my eyelids you know. Actually I've already been there with only hydrocodone to bring me back to the land of the living. This has also given me symptoms of IBS. I asked my Pain doctor last time as he was leaving the exam room to do a quickie injection on someone, "Is there a way to fix this?" And he just chuckled on his way out. ........sigh...........I guess that was my answer. Don't get me wrong, I love this guy, but I guess it could be worse.




Mimi,

Transverse myelitis is not as common as post SCI central pain, so it is very interesting to read your descriptions. Many of them resemble post spinal cord injury CP, and syrinx realted CP. In my own case the electric shocks diminished over many years. You do not describe any burning, which is the most severe part for me by a long shot, but it has not changed at all. Many I have corresponded with seem to have found medication which helps the pins and needles (brush), so maybe you can start on the wild goose chase to see if anything actually helps. For me, weighing the side effects, klonopin has been the best. All the meds have side effects. Klonopin is said to cause sore muscles, but I had very intense muscle pains before the Klonopin so I cannot say it has done that. Lyrica makes many feel loopy. The posts here are as good as you will find on side effects, but don't expect any consistency. It is just too individualized.

I am quite interested in your descriptions of your TM central pain. If you have the inclination, I for one would enjoy a further description of them. How often do they occur. Which are the worst. etc.

[skippy13]

I have been dx'd with amazingly, chronic hyperventilation. Oh yeah, it has done terrible things to me. Now I may have damaged my control center for respiration. This has damaged my muscles for sure.
There are no pins and needles, maybe a few spasms will start in my chest, back and torso,...
This has also given me symptoms of IBS.

Have you considered seeing a pt for breath training therapy? I bet most of your problems will disappear if you do. Even the IBS. If you have a brown paper bag you should use it. All of this stuff should be reversible in a couple of months, then you would be able to rid yourself of almost all of the medications you take. I bet your apnea would also improve if your breathing method is returned to normal also. None of this is irreversible unless you have been brain damaged somehow.

[Lee555]

Have you considered seeing a pt for breath training therapy? I bet most of your problems will disappear if you do. Even the IBS. If you have a brown paper bag you should use it. All of this stuff should be reversible in a couple of months, then you would be able to rid yourself of almost all of the medications you take. I bet your apnea would also improve if your breathing method is returned to normal also. None of this is irreversible unless you have been brain damaged somehow.

I don't think you understand the depth of this problem Skippy. This is not like I walk around having episodes of fast, hard breathing. This is at a cellular level where the membrane gates have become permeable in the wrong direction you might say.

Maybe try to explain it this way. You have baro-receptors throughout your tissues that test all the chemicals, hormones, oxygen and CO2 levels in your blood and system. They all detect certain things and when one thing is lacking, it signals the gland or mechanism that releases it. Or if there is too much, it shuts the gate. The same is true for the oxygen/CO2 levels in your blood,these detectors are supposed to run on how much oxygen you have and adjust your breathing to keep the oxygen at a certain level. Short periods of like a panic hyperventilation situation you can recover quickly using the bag method, because the average person's sympathetic nervous system is working. It equalizes the oxygen and CO2 levels by rebreathing the CO2 and so replaces the excess oxygen you've taken in. Voila, no more lightheadedness.

For me, the whole process has become reversed. My baro-receptors key in on the CO2 levels instead. Early on in my injury I had a lot of intense neck pain, spasms, nerve pain all situated in the upper extremities where the most important receptors for the lungs and heart are. I had all of this going on to some degree 24/7, and for a lot of it I couldn't take proper breathes because of the spasms in the chest, throat, arms and back. Uhhhh, so 14 months now of altered breathing the first of them causing much of the problem, and it has caused the receptors for CO2 to kick in instead. Is there not enough CO2 in the system? Well make it so. Breath shallow or not at all. This messes a lot of stuff up, starves tissues, the brain, organs, nerves, muscles all for oxygen and there is nothing I can really do about it. Quickly that is. Learning to breath again proper is a wonderful idea, except I can't do that while I sleep 8-9 hours a day. When the body says to heighten the CO2 levels at night while I sleep, I slow down my breathing, or stop, my airway collapses because the muscles are now going into spasm ( oh yeah, I woke up this morning very quietly and could feel the tightness in the lower trachea and with the muscles all nice and tight around it) from lack of food and the cycle continues as it has for months since the accident. Even during pain episodes when the muscles in the chest went into spasm, the bronchials got rigid and literally would vibrate deep into my chest when I moaned in pain.

At this point, when I start having a hard sharp pain episode begin, I have taken 4-5-8 quick breathes and even with this little bit of extra oxygen into the bloodstream, I start getting the pins and needles in the the hands and arms. This shouldn't happen. The pain of my injuries started this, in a most novel way, and the lack of medical care as in pain management and doctors who actually cared about their patients. Makes a huge difference. Nothing like having a gaggle of so-called doctors quack back and forth that this person cannot possibly have such pain (Let's not forget the Occipital Neuralgia) and they start calling you a nutcase. This added stress, which caused more of everything. I trust one man in my care, and only one. You see, my Pain doctor is not only treating me for this, but another man as well. Plus, he himself experienced what I'm going through, (though not as bad as mine) when he was young and returned from war trauma. He didn't have the drugs we do now, so he knows what I'm going through.

So there's no paper bag for me, no quick fix.

I also wanted to add that the pain comes from what is going on in my mind. Like watching a golfball come out of the sky up ahead of me while driving, hit the top of a truck cab and bounce off. I wondered if the person heard it, felt it impact, cuss about it, and then I looked up into my moonroof of my vehicle. Open to the sky. And a few seconds later neck and deep chest spasms and pain grip me. So easy, so fast. Nearly as fast as a mere thought.

[skippy13]

Chronic hyperventilation is not only about fast hard breathing. Even if caused by a physical problem, breath training can have some very positive effects. When you are sleeping the 8-9 hours during the day do you also experience sleep apnea then, or is it only at night?

I would be interested in reading the literature you base your conclusions on. I think I can handle it since I my university degrees are in Biology and Psychology. My minor is in Physics. I picked up a few things while in the employ of the Chemistry department of the same university as well. I dont quite understand your explanation of cell membranes and how it relates to your symptoms. I would really be interested in seeing some literature re your specific condition if I could, please.

There are so few physical causes of chronic hyperventilation. It should be easy for a physician to narrow down the cause now that the problem has been identified for you. It is well known that chronic hyperventilation can cause sleep apnea. I'm sure that any competent physician should be able to help you. It is good news that they have found out what the main problem is, isnt it?

Too bad about the Occipital neuralgia. I have Trigeminal neuralgia and can relate. Like an icepick to the ear for me. You might also be interested in looking at sleepdisordersguide.com for more information relating to chronic hyperventilation and sleep apnea.

[Lee555]

I expect retraining in how to breath would have positive effects. But that will come in time I'm sure. Right now, I need to get the air into me during the night when I am in REM sleep.Most people haven't a clue what happens during this time. You go through a period of paralysis where only the diaphragm causes you to breath and this is regulated by the brain, nothing else. I am sure if I am sleeping during the day it also happens because I am having reduced muscle response in the chest wall muscles. They don't seem to want to work properly, likely due to the spasms I had for months and months after the accident.

I think if you look up chronic hyperventilation and go beyond the typical example, as in, the brown bag fix, and see when tetany sets in, you will probably begin to understand where I am at. This also has much to do with the sympathetic nervous system and how it has become over-sensitized by chronic damage to the sensory receptors. Many persons who suffer an SCI get this, like central pain, it is everywhere. Nerves talk to one another, pathways of pain are created and once there, well, you can cut the nerve, use drugs to inhibit the receptors from communicating that amplified pain to the brain, or reset the entire system. If you've ever read about RSD there are clinics in Europe and Mexico that use Ketamine to induce coma for up to 5 days which can, in layman's terms, reboot the CNS. When there are no signals coming into the brain from the receptors, the pathways are broken and many people wake up from their coma painfree. It may not last forever, but it could save them years of suffering.

Pain has been the cause of this as I said earlier. How many persons in extreme pain experience hypervent? And extreme stress of course. Stress from the pain and stress from the idiot doctors who wouldn't listen. For at least a month I had an out of place tendon in the upper cervical area, and another in the left shoulder which took 9 or 10 months to slip back to where I could finally raise the left shoulder. All the pain and all the stress equals a hypersensitive SNS. You have to look at what it does to the body and the tissues when it goes on for too long. It changes the bodies chemistry and its normal response to its environment, be it cold or heat.

And no, it's not so easy for a doctor to dx this. Unless they have gone through it themselves. It's like when someone with Central Pain in an SCI situation tries to describe what they feel. I told doctors I felt like every cell in my body was being crushed under great pressure, and they just couldn't fathom how deep that pain went. They chalked it up to a headcase problem, and malingering.

And I didn't find anything on that website you mentioned.



Chronic hyperventilation is not only about fast hard breathing. Even if caused by a physical problem, breath training can have some very positive effects. When you are sleeping the 8-9 hours during the day do you also experience sleep apnea then, or is it only at night?

I would be interested in reading the literature you base your conclusions on. I think I can handle it since I my university degrees are in Biology and Psychology. My minor is in Physics. I picked up a few things while in the employ of the Chemistry department of the same university as well. I dont quite understand your explanation of cell membranes and how it relates to your symptoms. I would really be interested in seeing some literature re your specific condition if I could, please.

There are so few physical causes of chronic hyperventilation. It should be easy for a physician to narrow down the cause now that the problem has been identified for you. It is well known that chronic hyperventilation can cause sleep apnea. I'm sure that any competent physician should be able to help you. It is good news that they have found out what the main problem is, isnt it?

Too bad about the Occipital neuralgia. I have Trigeminal neuralgia and can relate. Like an icepick to the ear for me. You might also be interested in looking at sleepdisordersguide.com for more information relating to chronic hyperventilation and sleep apnea.

[zanedy]

It was interesting to read your thread. I have experienced some simular events. After my accident, I had rods that came lose. I had severe muscle spasms due to the screws and rods poking around in my back. The doctors overlooked this, and just kept increasing my mets, but didn't give me relief. (I also had broken ribs and cracked my sternum)
Had a corrective second surgery. Now 16 months later, I still have breathing problems. I developed SEVERE sleep apnea. 78 episodes per hour, lasting 20 to 30 seconds. I was given a CPAP machine, but because of my broken back, ribs and clavicle, I can't wear it at night, because I have to turn often at night.
When the pain hits high levels during the day, my brain tells my body to go to sleep, so I am also sleeping 8 to 10 hours during the day. And, I have noticed that I can not take the deep breaths that I use to. My normal breathing on the surface appears to fairly normal. But I was a singer for years, and when I just tried to sing again realized that I can't take deep breaths, and I also can't get up into the upper registers. I don't know if this relates to your experience, but I didn't have any breathing problems before, and they tell me that it shouldn't be physically caused. (by the way, I am not overweight, don't have a defeated septum, or any other problems like that.)

[RAFS]

I expect retraining in how to breath would have positive effects. But that will come in time I'm sure. Right now, I need to get the air into me during the night when I am in REM sleep.Most people haven't a clue what happens during this time. You go through a period of paralysis where only the diaphragm causes you to breath and this is regulated by the brain, nothing else. I am sure if I am sleeping during the day it also happens because I am having reduced muscle response in the chest wall muscles. They don't seem to want to work properly, likely due to the spasms I had for months and months after the accident.

I think if you look up chronic hyperventilation and go beyond the typical example, as in, the brown bag fix, and see when tetany sets in, you will probably begin to understand where I am at. This also has much to do with the sympathetic nervous system and how it has become over-sensitized by chronic damage to the sensory receptors. Many persons who suffer an SCI get this, like central pain, it is everywhere. Nerves talk to one another, pathways of pain are created and once there, well, you can cut the nerve, use drugs to inhibit the receptors from communicating that amplified pain to the brain, or reset the entire system. If you've ever read about RSD there are clinics in Europe and Mexico that use Ketamine to induce coma for up to 5 days which can, in layman's terms, reboot the CNS. When there are no signals coming into the brain from the receptors, the pathways are broken and many people wake up from their coma painfree. It may not last forever, but it could save them years of suffering.

Pain has been the cause of this as I said earlier. How many persons in extreme pain experience hypervent? And extreme stress of course. Stress from the pain and stress from the idiot doctors who wouldn't listen. For at least a month I had an out of place tendon in the upper cervical area, and another in the left shoulder which took 9 or 10 months to slip back to where I could finally raise the left shoulder. All the pain and all the stress equals a hypersensitive SNS. You have to look at what it does to the body and the tissues when it goes on for too long. It changes the bodies chemistry and its normal response to its environment, be it cold or heat.

And no, it's not so easy for a doctor to dx this. Unless they have gone through it themselves. It's like when someone with Central Pain in an SCI situation tries to describe what they feel. I told doctors I felt like every cell in my body was being crushed under great pressure, and they just couldn't fathom how deep that pain went. They chalked it up to a headcase problem, and malingering.

And I didn't find anything on that website you mentioned.
Lee,
I wondering if the breathing pacemaker would you to breathe better since you can't use a CPAP machine? Check it out.