Hi friends, I know that many of you have fibromyalgia,
and when I saw this written by a woman on another board I thought of you and want to show you this. It is of course very interesting for those of us having a spinal cord injury and arachnoiditis.
This is not a scientific based article, but I am sure she knows a lot about these items. You can agree or disagree, please make some comments if you think it's interesting.
ARACHNOIDITIS vs. FIBROMYALGIA?
The symptoms of arachnoiditis and/or a tethered spinal cord (tethered by arachnoid adhesions) can be identical to those felt to be caused by fibromyalgia. This is a topic that has concerned me greatly, ever since I have come across how often this diagnosis is given to patients who have known disorders of the spinal cord and spinal nervous system.
There seems to be a failure in the general medical community in recognizing the "softer" signs of damage/dysfunction of the nervous system. One of the main arachnoiditis symptoms that makes doctors consider fibromyalgia is the pain that occurs with different movements or body positions, which makes your body feel "trapped." But in arachnoiditis patients, this is simply what happens when normal body movement causes increased tension on the stuck nerves and/or spinal cord. When your spinal cord gets pulled on, it hurts. And it may hurt in weird places, because you're feeling the pain referred from that part of the spinal cord/nerves (so you may feel pain in your legs, butt, perineum, upper body, even though it's actually the nerves or cord themselves that are getting pulled on).
In addition, when the scar tissue causes a tethering effect on the cord, there can be gradual damage to the motor nerves descending the cord (I have this). In the early stages, the weakness resulting from this may be quite subtle, but the patient may complain of excessive muscle stiffness, tight tendons, and the bones "crunching" against one another (this seems to be because of the changes in the musculature supporting the joints). In these cases, the stiffness is coming from aberrant messages from the nerves to the muscles, rather than the muscles themselves. This pattern of "stiffening" is called "spasticity", and happens whenever any of the upper motor neurons of the brain or spinal cord are damaged.
It is much easier to recognize spasticity when it is further advanced, and most doctors are used to diagnosing spasticity in obvious cases, as when this happens as a result of stroke, cerebral palsy, spinal cord injury, or advanced MS. However, in those diseases in which the motor nerves are damaged very gradually - such as MS, and tethered cord/arachnoiditis - you can see more clearly that it all happens on a spectrum, and that in the early stages the patient often has symptoms, but no findings that are obvious to the doctor on physical exam (obvious muscle wasting, dramatic weakness, or reflex changes). Only when they become obvious at a later point can the doctor feel sure what was going on, in hindsight. Doctors who see a lot of these patients start to become more comfortable making the diagnosis on the basis of the patient's reported symptoms at earlier stages.
It is hard for me to keep reading accounts from patients with known spinal cord abnormalities, or known spinal injuries, who display all the signs of mild-moderate upper motor neuron damage, yet have their chronic muscle tightness, weakness, and contractions written off as "myofascial pain syndrome" or "fibromyalgia." Not because I don't think those are real diseases, but because it fails to make the connection between the symptoms and their likely underlying cause, in patients who have a spinal abnormality one would expect might cause these exact problems. This issue comes up a lot among all groups of patients who have rare, poorly-understood spinal disorders. It's fine for a doctor to consider all the possibilities, but one really has to be careful that one is capable of recognizing the signs of spinal cord/nerve unhappiness when they show up in these patients who have known abnormalities.
Other than the confusion surrounding mild muscle spasticity, another group of symptoms that can get an arachnoiditis patient diagnosed with fibromyalgia are the neuropathic pains that naturally result from the ongoing mechanical traction on delicate nervous system structures. These symptoms are an expected part of having arachnoid adhesions. Part of the problem is that there are many misunderstandings within the medical community of just how many symptoms the arachnoid adhesions themselves can cause, and what parts of the body may be involved.
Once the arachnoid adhesions have a tethering efect on the spinal cord, that tension can potentially be transmitted through the entire length of the spinal cord. This varies from patient to patient, depending on the exact effects of scarring in limiting the normal movement of the spinal cord. Over time, some arachnoiditis patients with a tethered cord can develop abnormalities in their upper spinal cord, including what is called a syrinx (a hollowing-out of the spinal cord itself). I just mention this to show the known link between lumbosacral adhesions and later problems in the upper cord. A syrinx is now thought to usually be the end result of some other underlying spinal disorder, inclusing things like tumors, but also arachnoid adhesions and long-standing tension from a tethered spinal cord. The syrinx may take a long time to form, but transient pain/numbness may show up earlier (this has been described in the literature as a "presyrinx"), due to the basic forces acting on that bit of the spinal cord that even tually could cause it to form a syrinx.
The result of this physical phenomenon is that a certain subset of arachnoiditis patients have symptoms in their upper body and arms, as well as some other places. This tends to come on in positions in which there's increased tension on the spinal cord, such as lying down at night, or prolonged sitting. I have this, and if you read enough stories from patients with arachnoiditis and/or tethered cord, you'll see it come up again and again. The medical literature explains the scientific basis for this very well as it occurs in tethered cord and syrinx development, both of which are associated with arachnoid adhesions, and so it's not actually a medical mystery. However, many of the more recent papers are new (as of this year), and the consequences of this information have not yet trickled down to many of the doctors who see these patients. Poor understanding of the mechanics of the spine is the norm, unfortunately. A lot of those patients end up with double or triple diagnoses, because their doctors can't understand how upper body pain/numbness/weakness could be linked to a lumbosacral problem.
A big part of the problem is that doctors are limited in their diagnostic tools, yet may not themselves be aware of these limitations. MRI, EMG, physical exam - all are good for some things, but will miss others. That's fine if the doctor understands what may have been missed - but too often I find a negative test result is taken to mean that the area investigated must be completely normal, without any understanding of whether the test would have been able to show the abnormality you're looking for or not. The classic example for this is the EMG, done to look for damage to the motor nerves. I am amazed that I still find doctors (even neurosurgeons) who think a normal EMG means the entire motor nerve system is intact. In fact, the EMG is only able to test the second set of motor nerves that leave the spinal cord to travel to the muscles themselves. The upper motor neurons, which make up most of the motor fibers within the spinal cord itself, are completely invisible to an EMG.
Another area of confusion is that joint pain is a frequent part of the whole arachnoiditis syndrome. This falls into two general categories. The first is that the pain may be purely neuropathic, meaning that the joint itself is okay, but the nerves to the joint are misfiring. The other category, however, encompasses patients like me who are limping around on legs that have weak muscles from partial muscle damage. When the muscles can't support the joints properly, this can put excessive, imbalanced forces on the joints as you use them, hastening the wear and tear that leads to arthritis. Eventually, clear signs of arthritis will develop on MRI and X-ray, even in young patients. This has gotten some doctors confused into looking for some rheumatological component to explain the disease (i.e., fibromyalgia) when it actually is a simple consequence of the biomechanics of using a weakly-supported joint.
Blue
and when I saw this written by a woman on another board I thought of you and want to show you this. It is of course very interesting for those of us having a spinal cord injury and arachnoiditis.
This is not a scientific based article, but I am sure she knows a lot about these items. You can agree or disagree, please make some comments if you think it's interesting.
ARACHNOIDITIS vs. FIBROMYALGIA?
The symptoms of arachnoiditis and/or a tethered spinal cord (tethered by arachnoid adhesions) can be identical to those felt to be caused by fibromyalgia. This is a topic that has concerned me greatly, ever since I have come across how often this diagnosis is given to patients who have known disorders of the spinal cord and spinal nervous system.
There seems to be a failure in the general medical community in recognizing the "softer" signs of damage/dysfunction of the nervous system. One of the main arachnoiditis symptoms that makes doctors consider fibromyalgia is the pain that occurs with different movements or body positions, which makes your body feel "trapped." But in arachnoiditis patients, this is simply what happens when normal body movement causes increased tension on the stuck nerves and/or spinal cord. When your spinal cord gets pulled on, it hurts. And it may hurt in weird places, because you're feeling the pain referred from that part of the spinal cord/nerves (so you may feel pain in your legs, butt, perineum, upper body, even though it's actually the nerves or cord themselves that are getting pulled on).
In addition, when the scar tissue causes a tethering effect on the cord, there can be gradual damage to the motor nerves descending the cord (I have this). In the early stages, the weakness resulting from this may be quite subtle, but the patient may complain of excessive muscle stiffness, tight tendons, and the bones "crunching" against one another (this seems to be because of the changes in the musculature supporting the joints). In these cases, the stiffness is coming from aberrant messages from the nerves to the muscles, rather than the muscles themselves. This pattern of "stiffening" is called "spasticity", and happens whenever any of the upper motor neurons of the brain or spinal cord are damaged.
It is much easier to recognize spasticity when it is further advanced, and most doctors are used to diagnosing spasticity in obvious cases, as when this happens as a result of stroke, cerebral palsy, spinal cord injury, or advanced MS. However, in those diseases in which the motor nerves are damaged very gradually - such as MS, and tethered cord/arachnoiditis - you can see more clearly that it all happens on a spectrum, and that in the early stages the patient often has symptoms, but no findings that are obvious to the doctor on physical exam (obvious muscle wasting, dramatic weakness, or reflex changes). Only when they become obvious at a later point can the doctor feel sure what was going on, in hindsight. Doctors who see a lot of these patients start to become more comfortable making the diagnosis on the basis of the patient's reported symptoms at earlier stages.
It is hard for me to keep reading accounts from patients with known spinal cord abnormalities, or known spinal injuries, who display all the signs of mild-moderate upper motor neuron damage, yet have their chronic muscle tightness, weakness, and contractions written off as "myofascial pain syndrome" or "fibromyalgia." Not because I don't think those are real diseases, but because it fails to make the connection between the symptoms and their likely underlying cause, in patients who have a spinal abnormality one would expect might cause these exact problems. This issue comes up a lot among all groups of patients who have rare, poorly-understood spinal disorders. It's fine for a doctor to consider all the possibilities, but one really has to be careful that one is capable of recognizing the signs of spinal cord/nerve unhappiness when they show up in these patients who have known abnormalities.
Other than the confusion surrounding mild muscle spasticity, another group of symptoms that can get an arachnoiditis patient diagnosed with fibromyalgia are the neuropathic pains that naturally result from the ongoing mechanical traction on delicate nervous system structures. These symptoms are an expected part of having arachnoid adhesions. Part of the problem is that there are many misunderstandings within the medical community of just how many symptoms the arachnoid adhesions themselves can cause, and what parts of the body may be involved.
Once the arachnoid adhesions have a tethering efect on the spinal cord, that tension can potentially be transmitted through the entire length of the spinal cord. This varies from patient to patient, depending on the exact effects of scarring in limiting the normal movement of the spinal cord. Over time, some arachnoiditis patients with a tethered cord can develop abnormalities in their upper spinal cord, including what is called a syrinx (a hollowing-out of the spinal cord itself). I just mention this to show the known link between lumbosacral adhesions and later problems in the upper cord. A syrinx is now thought to usually be the end result of some other underlying spinal disorder, inclusing things like tumors, but also arachnoid adhesions and long-standing tension from a tethered spinal cord. The syrinx may take a long time to form, but transient pain/numbness may show up earlier (this has been described in the literature as a "presyrinx"), due to the basic forces acting on that bit of the spinal cord that even tually could cause it to form a syrinx.
The result of this physical phenomenon is that a certain subset of arachnoiditis patients have symptoms in their upper body and arms, as well as some other places. This tends to come on in positions in which there's increased tension on the spinal cord, such as lying down at night, or prolonged sitting. I have this, and if you read enough stories from patients with arachnoiditis and/or tethered cord, you'll see it come up again and again. The medical literature explains the scientific basis for this very well as it occurs in tethered cord and syrinx development, both of which are associated with arachnoid adhesions, and so it's not actually a medical mystery. However, many of the more recent papers are new (as of this year), and the consequences of this information have not yet trickled down to many of the doctors who see these patients. Poor understanding of the mechanics of the spine is the norm, unfortunately. A lot of those patients end up with double or triple diagnoses, because their doctors can't understand how upper body pain/numbness/weakness could be linked to a lumbosacral problem.
A big part of the problem is that doctors are limited in their diagnostic tools, yet may not themselves be aware of these limitations. MRI, EMG, physical exam - all are good for some things, but will miss others. That's fine if the doctor understands what may have been missed - but too often I find a negative test result is taken to mean that the area investigated must be completely normal, without any understanding of whether the test would have been able to show the abnormality you're looking for or not. The classic example for this is the EMG, done to look for damage to the motor nerves. I am amazed that I still find doctors (even neurosurgeons) who think a normal EMG means the entire motor nerve system is intact. In fact, the EMG is only able to test the second set of motor nerves that leave the spinal cord to travel to the muscles themselves. The upper motor neurons, which make up most of the motor fibers within the spinal cord itself, are completely invisible to an EMG.
Another area of confusion is that joint pain is a frequent part of the whole arachnoiditis syndrome. This falls into two general categories. The first is that the pain may be purely neuropathic, meaning that the joint itself is okay, but the nerves to the joint are misfiring. The other category, however, encompasses patients like me who are limping around on legs that have weak muscles from partial muscle damage. When the muscles can't support the joints properly, this can put excessive, imbalanced forces on the joints as you use them, hastening the wear and tear that leads to arthritis. Eventually, clear signs of arthritis will develop on MRI and X-ray, even in young patients. This has gotten some doctors confused into looking for some rheumatological component to explain the disease (i.e., fibromyalgia) when it actually is a simple consequence of the biomechanics of using a weakly-supported joint.
Blue
USA
California US
Linda that
was a great site!!
Mosken
Missy,
.
