Bothrops
01-24-2005, 01:55 PM
About 20 months ago I got ill and to this day have yet to recover. My symptoms are lightheadedness, dizziness, brainfog and fatigue, burning sensations in arms, back and shoulders. I have visual problems, full ears, sinusitis, kidney pain, frequent urination, sore throats, joint and muscle pains from lower back to feet. I almost forgot depression, anxiety, night and cold sweats
I have had plenty of blood work, MRI’s and CT’s. So far the only thing I have tested positive for is chronic EBV, cytomegalovirus, sinusitis and a + ANA. My hemoglobin and cholesterol are a little high. I have been on all sorts of antibiotics, even though they have not seen infection. After being on doxycycline for three months my bowels were normal and on time and kidney pains stopped. I have been on paxil and effexor now beta blockers with very little help. I will say they have helped my headaches and allowed me to sleep a little better.
I recently saw an ID Dr. who tested my immune system. Everything he tested me for checked out. He told me that was all he could do. I thought ID Drs. diagnosed CFIDS, does this mean I do not have this condition? He told me to get in touch with my GP. My GP was supposed to send me to a rheumatologist over a month ago. I still have not heard from her, after leaving messages twice.
Has anyone been through this? I have to get better and go back to work. I have two kids. Our government does not think that I am disabled. I am really confused on what I should do next? Does anyone have a clue to who I can get a proper diagnosis from. Is there any supplements I can take? Is there any other test I should have done? Does this even sound like CFS or FM.
Derek
I have had plenty of blood work, MRI’s and CT’s. So far the only thing I have tested positive for is chronic EBV, cytomegalovirus, sinusitis and a + ANA. My hemoglobin and cholesterol are a little high. I have been on all sorts of antibiotics, even though they have not seen infection. After being on doxycycline for three months my bowels were normal and on time and kidney pains stopped. I have been on paxil and effexor now beta blockers with very little help. I will say they have helped my headaches and allowed me to sleep a little better.
I recently saw an ID Dr. who tested my immune system. Everything he tested me for checked out. He told me that was all he could do. I thought ID Drs. diagnosed CFIDS, does this mean I do not have this condition? He told me to get in touch with my GP. My GP was supposed to send me to a rheumatologist over a month ago. I still have not heard from her, after leaving messages twice.
Has anyone been through this? I have to get better and go back to work. I have two kids. Our government does not think that I am disabled. I am really confused on what I should do next? Does anyone have a clue to who I can get a proper diagnosis from. Is there any supplements I can take? Is there any other test I should have done? Does this even sound like CFS or FM.
Derek
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apriltones
01-25-2005, 11:51 AM
hi derek, i really dont know. try lymes board maybe?love april x
kcgage
01-25-2005, 02:57 PM
Derek,
Ask your dr. to be referred to another rheumatologist. I have a good friend who also has FM but was diagnosed with sinusitis and EBV first.
Not much, but I hope that helps.
Ask your dr. to be referred to another rheumatologist. I have a good friend who also has FM but was diagnosed with sinusitis and EBV first.
Not much, but I hope that helps.
fibrolady
01-29-2005, 10:42 PM
Only a licensed Rheumatologist or specialized pain management physician should diagnose FMS, or any other illness for you. But, I can tell you that there IS a diagnostic test for FMS, if so diagnosed, you can qualify for disability, as I have. After my State disability ran out, I applied for full disability through Social Security. My claim was denied the first time, I had a Hearing, and I won. I should add that I used an attorney when filing my Social Security claim. There are attornies that only handle this kind of work. Social Security paid my attorney's fees once my claim was approved.
Furthermore, there are articles now published for jurisprudence cases. One good one is called "Innovations in Soft-Tissue Jurisprudence", by W. McKinley Smiley, Jr., J.D., LLM, Stetson University College of Law, St. Petersburg, FL, Jeffrey R. Cram, Ph.D, Nevada City, CA, Michael S. Margoles, MD, Ph.D, San Jose, CA, Thomas J. Romano, MD, Ph.D, Wheeling, West Virginia and John Stiller, MD, Plant City, FL (Authors), published in the Trial Diplomacy Journal.
Contact the following FMS organizations for information and copies of articles:
Fibromyalgia Network, P.O. Box 31750, Tucson, AZ 85751, (800) 853-2929; The Fibromyalgia Alliance of America, P.O. Box 21990, Columbus, OH 43221, (614) 457-4222
Books available include "The Fibromyalgia Supporter", by Mark J. Pellegrino, MD (1997), and Dr. Pellegrino has at least three other books on the market, ie. "Fibromyalgia, Managing the Pain" (1993), "The Fibromyalgia Survivor", where no subject relevant to FMS is left untouched. Dr. Pellegrino is both physician and patient and his books are written with liberal use of humor.
Best of luck
Furthermore, there are articles now published for jurisprudence cases. One good one is called "Innovations in Soft-Tissue Jurisprudence", by W. McKinley Smiley, Jr., J.D., LLM, Stetson University College of Law, St. Petersburg, FL, Jeffrey R. Cram, Ph.D, Nevada City, CA, Michael S. Margoles, MD, Ph.D, San Jose, CA, Thomas J. Romano, MD, Ph.D, Wheeling, West Virginia and John Stiller, MD, Plant City, FL (Authors), published in the Trial Diplomacy Journal.
Contact the following FMS organizations for information and copies of articles:
Fibromyalgia Network, P.O. Box 31750, Tucson, AZ 85751, (800) 853-2929; The Fibromyalgia Alliance of America, P.O. Box 21990, Columbus, OH 43221, (614) 457-4222
Books available include "The Fibromyalgia Supporter", by Mark J. Pellegrino, MD (1997), and Dr. Pellegrino has at least three other books on the market, ie. "Fibromyalgia, Managing the Pain" (1993), "The Fibromyalgia Survivor", where no subject relevant to FMS is left untouched. Dr. Pellegrino is both physician and patient and his books are written with liberal use of humor.
Best of luck
kcgage
01-30-2005, 12:50 PM
Fibrolady, what is the diagnostic test you are referring to?
fibrolady
01-31-2005, 01:14 AM
Derek - first review the information contained in my other posting that describes "symptoms of FMS". Doctors who are involved with the treatment of FMS are familiar with the diagnostic test. Most doctors are not. So, first find a physician who is familiar with FMS.
The diagnosis is based mainly on objective testing for the presence of tender points. The tender points occur in muscles or the area where a muscle joins a tendon. Diagnostic criteria were defined by the American College of Rheumatology (ACR) in 1990. The ACR concluded that FMS could be diagnosed by a history of widespread pain in at least 11 out of 18 specified tender points in muscular tissue. Pain was described as widespread if it was felt in all of the following regions: left and right sides of the body, above and below the waist, and in the axial skeleton (cervical spine, anterior chest, thoracic spine, or low back). The 18 tender points on digital palpation were identified by the ACR. To meet ACR diagnostic criteria for FMS, ditital palpation with an approximate force of 4 kilograms of pressure must produce a report of pain in at least 11 of these 18 tender points. Bilateral palpation with moderate pressure of the thumbs (Examiner's thumbnail should blanch) should produce pain in the tender point areas. Unaffected patients may also be slightly tender at these points, but fibromyalgia patients will exhibit a reduced pain tolerance symmetrically at the tender points. Pain in the tender points must have been present for at least 3 months. Sometimes clinicians accept a diagnosis of FMS with fewer than 11 tender points, if several associated symptoms are present. The diagnosis is commonly entertained in the presence of unexplained widespread pain or achiness, persistent fatigue, generalized (morning) stiffness, nonrefreshing sleep, and multiple tender points. A variable proportion of otherwise typical patients may have less than 11 tender points at the time of the examination. I don't know the actual tender point locations, but my doctor did. He pressed on areas on my neck, arms, stomach, back, etc.
FMS patients may report any of the following symptoms: persistent pain in the neck, shoulder, low back, and hip; waking up without feeling rested; severe fatigue; waking frequently during the night; waking with stiffness and achiness; hypersensitivity to cold and/or heat; complaints of abdominal pain; recurrent fronto-occipital headaches; sensations of numbness or tingling in hands and /or feet; constipation and diarrhea; and anxiety and depression. Due to the chronic nature of FMS, relationships among family members, friends and coworkers can be affected.
There have been a number of studies on FMS and its symptoms, some of which do not agree with the ACR report in its entirety, but the ACR criteria is most followed by physicians today for diagnostic purposes. The palpation test is usually performed by a Neurologists or Thoracic Physician, Pain Management Physician, etc., who has the proper guidelines instruments.
I know this sounds complicated. I tried to give you the "direct from the reports" information so that maybe you could copy this and take it with you to your physician.
God bless you and all of us FMS sufferers. It is up to us to educate ourselves and our medical community. I'm here to help any time. :)
The diagnosis is based mainly on objective testing for the presence of tender points. The tender points occur in muscles or the area where a muscle joins a tendon. Diagnostic criteria were defined by the American College of Rheumatology (ACR) in 1990. The ACR concluded that FMS could be diagnosed by a history of widespread pain in at least 11 out of 18 specified tender points in muscular tissue. Pain was described as widespread if it was felt in all of the following regions: left and right sides of the body, above and below the waist, and in the axial skeleton (cervical spine, anterior chest, thoracic spine, or low back). The 18 tender points on digital palpation were identified by the ACR. To meet ACR diagnostic criteria for FMS, ditital palpation with an approximate force of 4 kilograms of pressure must produce a report of pain in at least 11 of these 18 tender points. Bilateral palpation with moderate pressure of the thumbs (Examiner's thumbnail should blanch) should produce pain in the tender point areas. Unaffected patients may also be slightly tender at these points, but fibromyalgia patients will exhibit a reduced pain tolerance symmetrically at the tender points. Pain in the tender points must have been present for at least 3 months. Sometimes clinicians accept a diagnosis of FMS with fewer than 11 tender points, if several associated symptoms are present. The diagnosis is commonly entertained in the presence of unexplained widespread pain or achiness, persistent fatigue, generalized (morning) stiffness, nonrefreshing sleep, and multiple tender points. A variable proportion of otherwise typical patients may have less than 11 tender points at the time of the examination. I don't know the actual tender point locations, but my doctor did. He pressed on areas on my neck, arms, stomach, back, etc.
FMS patients may report any of the following symptoms: persistent pain in the neck, shoulder, low back, and hip; waking up without feeling rested; severe fatigue; waking frequently during the night; waking with stiffness and achiness; hypersensitivity to cold and/or heat; complaints of abdominal pain; recurrent fronto-occipital headaches; sensations of numbness or tingling in hands and /or feet; constipation and diarrhea; and anxiety and depression. Due to the chronic nature of FMS, relationships among family members, friends and coworkers can be affected.
There have been a number of studies on FMS and its symptoms, some of which do not agree with the ACR report in its entirety, but the ACR criteria is most followed by physicians today for diagnostic purposes. The palpation test is usually performed by a Neurologists or Thoracic Physician, Pain Management Physician, etc., who has the proper guidelines instruments.
I know this sounds complicated. I tried to give you the "direct from the reports" information so that maybe you could copy this and take it with you to your physician.
God bless you and all of us FMS sufferers. It is up to us to educate ourselves and our medical community. I'm here to help any time. :)
tkgoodspirit
01-31-2005, 02:14 AM
Gotta jump in here. While tender points are a significant "signal" for FM they are no longer considered to be the single identifier for the condition. There is a new study out that is called something like "Beyond Tender Points" that defines new research that is more significant for diagnosing FM. I receive a quarterly newsletter from one of the very organizations that were mentioned in the previous post, and there is a wealth of information about new diagnosis and new docs who should be doing the diagnosing. Actually, rheumatologists are no longer recommened as the "doctor of choice" to treat FM, since most of them do not spend more time studying the condition and are not willing to dive into the complexity of this condition. More and more research suggests that neurologists or docs who specialize in musckularselatol diseases and conditons are better for FM. There are more and more rhemies who are not taking seminars that teach about FM and how tricky it is. Dr. Tietelbaum ( I know I am not spelling his name right) conducts seminars for rheumies and other docs who treat FM. He has a book out titled "From Fatigued to Fantastic". He also researches CFS. In my newsletter there is a section that mentions a specific test for FM, but most docs don't do it because it involves a spinal tap. It is a test for "Substance P". We Fibromites are lacking this, and it correlates amoung other FM patients as being consistantly low. The newsletter also said that the American College of Rheumatology as well as the Arthritis Foundation are looking into the possibility of FM being classified as a "disease" instead of a "condition".
As for the tender points, they are no longer the standard for dx'ing FM. Reason being, some FM patients have little or no tender points, and some don't have the standard 18 or 11 or whatever it is supposed to be. However, it is still common to feel points of tenderness between the inner knees, elbows, upper neck, etc. There is also new research out that uses MRI to show the reaction in the brain while a patient with FM is being administered a "normal" amount of pain. There was a study done that compared two patients, one with FM, one without, and administered a "tolerable" amount of pain. The reaction in the brain using the MRI showed the FM patient's brain "stealing" from the cognitive part while trying to give the part of the brain that reacts to pain a "boost". They believe this is one cause for the "fibrofog".
Here is some words I am applying from my newsletter, not copying, but "translating" (don't want to get my butt in trouble here but you all should know this).
Okay, it basically says: A speaker at the American College Of Rheumatology's confernce says that your PCP is better suited to treat your FM, because he/she knows you best, while a specialist meets you once, runs tests, then begins treatment. Usually most of us have been with our PCP's for years. I've had mine for nearly 8. Two years ago the president of the American College of Rheumatology stated that FM doesn't belong in rheumatology. Reason behind this statement was basically because this organization believes that there are just as many PCP's as there are Rheumies who understand this condtion, but most patients have a better relationship with their PCP. They believe that the PCP's should be treating your FM. I personally had the choice after I was dx'd. My family doc could treat me, or my rheumy could treat me. I chose my family doc. I also have a PM doc. Which is another issue that has been discussed. Because most GP's do not want to get into pain meds, neither do most rheumies, there we go off to a PM clinic, which are usually back logged. The organizations that research and inform about FM are urging more GP/PCP's and Rheumies to step into the world of prescribing opiates for their FM patients if needed. Overall, what is needed is some sort of middle ground instead of "referring" us out over and over again.
There is also a correlation between neck pain and FM, and sleep apnea and FM. You wake up stuffy and dry mouthed? So do a lot of FM patients. The research is out there. There is a post here on the FM board titled "Sleep Apnea" ( or something like that). You should read it if you have the chance. There is a link. There are more and more sleep studies being done on FM patients.
Also a new med commonly used in Japan to treat pain is now being clinically studied here (Bethesda is running this trial for any of you near this hospital).
Neurotropin is the new meds name. You can surf the web for it. And you can also surf the web for the correlations between FM and neck pain, as well as sleep apnea. You can also use the web to see what clinical trials are going on for meds to treat FM. Maybe there is one near you and you can take part.
Bottom line, diagnosing FM is way beyond tender points now. So if you are on the fence about going to your doc thinking you may have FM, but you don't meet the tender point symptoms, do not use those to hold you back, they are not the norm for diagnosing FM any longer. We have come so far in this condition, new info is out there everyday, and it's comforting to know that research is being done to help people like us. We haven't been forgotten about, even though it may feel that way.
So, do some surfing. Look up Substance P, and look for the book "From Fatigued to Fantastic" as well as some of the other things mentioned here. I got all this info from my newsletter and from the web itself. I would never post anything here unless I thought it was worth sharing with you all, so you all can look see for yourself and draw your own conclusions.
Here's wishing you a good spirit,
tk
As for the tender points, they are no longer the standard for dx'ing FM. Reason being, some FM patients have little or no tender points, and some don't have the standard 18 or 11 or whatever it is supposed to be. However, it is still common to feel points of tenderness between the inner knees, elbows, upper neck, etc. There is also new research out that uses MRI to show the reaction in the brain while a patient with FM is being administered a "normal" amount of pain. There was a study done that compared two patients, one with FM, one without, and administered a "tolerable" amount of pain. The reaction in the brain using the MRI showed the FM patient's brain "stealing" from the cognitive part while trying to give the part of the brain that reacts to pain a "boost". They believe this is one cause for the "fibrofog".
Here is some words I am applying from my newsletter, not copying, but "translating" (don't want to get my butt in trouble here but you all should know this).
Okay, it basically says: A speaker at the American College Of Rheumatology's confernce says that your PCP is better suited to treat your FM, because he/she knows you best, while a specialist meets you once, runs tests, then begins treatment. Usually most of us have been with our PCP's for years. I've had mine for nearly 8. Two years ago the president of the American College of Rheumatology stated that FM doesn't belong in rheumatology. Reason behind this statement was basically because this organization believes that there are just as many PCP's as there are Rheumies who understand this condtion, but most patients have a better relationship with their PCP. They believe that the PCP's should be treating your FM. I personally had the choice after I was dx'd. My family doc could treat me, or my rheumy could treat me. I chose my family doc. I also have a PM doc. Which is another issue that has been discussed. Because most GP's do not want to get into pain meds, neither do most rheumies, there we go off to a PM clinic, which are usually back logged. The organizations that research and inform about FM are urging more GP/PCP's and Rheumies to step into the world of prescribing opiates for their FM patients if needed. Overall, what is needed is some sort of middle ground instead of "referring" us out over and over again.
There is also a correlation between neck pain and FM, and sleep apnea and FM. You wake up stuffy and dry mouthed? So do a lot of FM patients. The research is out there. There is a post here on the FM board titled "Sleep Apnea" ( or something like that). You should read it if you have the chance. There is a link. There are more and more sleep studies being done on FM patients.
Also a new med commonly used in Japan to treat pain is now being clinically studied here (Bethesda is running this trial for any of you near this hospital).
Neurotropin is the new meds name. You can surf the web for it. And you can also surf the web for the correlations between FM and neck pain, as well as sleep apnea. You can also use the web to see what clinical trials are going on for meds to treat FM. Maybe there is one near you and you can take part.
Bottom line, diagnosing FM is way beyond tender points now. So if you are on the fence about going to your doc thinking you may have FM, but you don't meet the tender point symptoms, do not use those to hold you back, they are not the norm for diagnosing FM any longer. We have come so far in this condition, new info is out there everyday, and it's comforting to know that research is being done to help people like us. We haven't been forgotten about, even though it may feel that way.
So, do some surfing. Look up Substance P, and look for the book "From Fatigued to Fantastic" as well as some of the other things mentioned here. I got all this info from my newsletter and from the web itself. I would never post anything here unless I thought it was worth sharing with you all, so you all can look see for yourself and draw your own conclusions.
Here's wishing you a good spirit,
tk