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Head Pain
5 Replies
mlj5870 - April 20

Hi, I am new to the site and was hoping to see if any other people may have these symptoms. I have been sick now for about 10 yrs and have gone to several doctors and have several MRI, Cat Scans ect all come back normal. The main symptom that I am getting is hard to describe. Pain in back of head and neck area. The pain or feeling in the back of the head almost feels crawly. I also get pain in the neck, elbows, and now the knees. also chest area even though all heart tests are hormal. Also very fatigued somtimes it feels like I cant even drive. So I dont have alot of pain in the pressure points but some. Doctor says it is Fibro. but was just wondering about how the head can feel. Thanks Mike

 

Pikespeak - April 21

Hi Mike! They've recently come out with a new diagnostic test which is more inclusive to men. You don't have to have all the points to have FMS. Do you get a good night's sleep? I would start there. A great night's sleep made a world of difference to me (I take Ambien). Have any of your tests indicated arthritis? Do you overindulge in sugar or aspartame (found in almost every diet food? Have you ever tried cutting gluten from your diet? How about stretching or some gentle massage? These are relatively simple things to try to see if you feel better...let us know how you're doing!

 

January - April 21

Pikespeak makes some good points. Your chest pain might be costochondritis. And you might also have chronic fatigue syndrome.

There's a lot written about how we FMS/CFS people are the more sensitive ones, the canaries in the coal mine, so to speak. So it's crucial that we get the chemicals and preservatives and food colorings out of our diets.

(For those of you who are too young to know this phrase, it came about centuries ago, when miners kept canaries in the coal mines because they were very sensitive to air quality. If toxic gases seeped in, or if the oxygen level dropped, the canaries would stop singing, pass out and die. Therefore, this was an early warning system of trouble - if the canaries stopped singing, the miners knew to get out because the air was bad, even though it was not bad enough yet for the men to notice it. When we say FMS people are the canaries in the coal mine - we mean that our bodies are more sensitive than most - and so we are reacting to the poisons in our food and in our environment NOW - but eventually, everyone may get sick if we don't clean up the mess.)

I've had FMS and CFS (diagnosed) for 2 decades. I had a wonderful, brilliant old doctor who diagnosed me (back when nobody had heard of fibro) and he said we had to treat two things: the sleep and the pain - and he was right.

The usual "fibro" drugs didn't work for me - in fact they were horrible! What worked was gluten free diet, acupuncture, and tons of supplements that I carefully researched.

For sleep I started with amitriptyline and then Ambien (but it quit working well) so now I take a fairly large dose of melatonin and a half an Ambien. Sleep is crucial. If you are in very bad pain, see if you can get some prescription pain meds. They work better than antidepressants or anticonvulsants, and they have fewer side effects. The big caution is you have to use the lowest dose possible - cut your pills up, and just take enough to reach a comfort level. That way they will continue to work for you and tolerance will build more slowly.

And… destress your life. This is an illness and you need to take care of yourself. Educate people that you need to pace yourself. If you need to rest, do so - and don't push yourself too hard. There's a lot of new research implicating viruses and other diseases in fibro, so you might want to check that out too. A good diagnosis is key to finding the solution. Hope you feel better soon - but you have to educate yourself and not just depend on your busy doctor.

 

mlj5870 - April 21

Thanks for your input. Ya I know that I eat way to much sweets. Ya my doc as ruled out arthritis. what is the name of the new diagnotsic test for men? I will try anything at this point. Can hardly make it through the day. The last 3 days so fatigued can hardly move and head fills tingly and also a little light headed. I will start on a low sugar diet. Thanks again Mike

 

Fantod - April 22

Hi Mike - Welcome to the board!

Has anyone ever considered TMJ or myofascial pain as part of your head and neck pain?

If you clench or grind your teeth (TMJ) that would certainly contribute to pain in the neck, head, shoulders and arms. You would need to see a dentist that specializes in TMJ to have a bite splint made to wear while you sleep. The splint relaxes your jaw and prevents you from further damaging your teeth. Don't expect overnight results from wearing a splint. Your muscles are now locked into a pattern of spasm that will take some time to break.

Myofascial pain syndrome is a chronic form of muscle pain. The pain of myofascial pain syndrome centers around sensitive points in your muscles called trigger points. The trigger points can be painful when touched. And the pain can spread throughout the affected muscle.

Nearly everyone experiences muscle pain from time to time that generally resolves in a few days. But people with myofascial pain syndrome have muscle pain that persists or worsens. Myofascial pain caused by trigger points has been linked to many types of pain, including headaches, jaw pain, neck pain, low back pain, pelvic pain, and arm and leg pain.

Treatment for myofascial pain syndrome can bring relief in many cases. Treatment options include physical therapy, trigger point injections or medications.

Myofascial pain syndrome is a chronic form of muscle pain. The pain of myofascial pain syndrome centers around sensitive points in your muscles called trigger points. The trigger points can be painful when touched. And the pain can spread throughout the affected muscle.

Nearly everyone experiences muscle pain from time to time that generally resolves in a few days. But people with myofascial pain syndrome have muscle pain that persists or worsens. Myofascial pain caused by trigger points has been linked to many types of pain, including headaches, jaw pain, neck pain, low back pain, pelvic pain, and arm and leg pain.

Treatment for myofascial pain syndrome can bring relief in many cases. Treatment options include physical therapy, trigger point injections or medications.

Myofascial pain syndrome is a chronic form of muscle pain. The pain of myofascial pain syndrome centers around sensitive points in your muscles called trigger points. The trigger points can be painful when touched. And the pain can spread throughout the affected muscle.

Nearly everyone experiences muscle pain from time to time that generally resolves in a few days. But people with myofascial pain syndrome have muscle pain that persists or worsens. Myofascial pain caused by trigger points has been linked to many types of pain, including headaches, jaw pain, neck pain, low back pain, pelvic pain, and arm and leg pain.

Treatment for myofascial pain syndrome can bring relief in many cases. Treatment options include physical therapy, trigger point injections or medications.

Myofascial pain syndrome is a chronic form of muscle pain. The pain of myofascial pain syndrome centers around sensitive points in your muscles called trigger points. The trigger points can be painful when touched. And the pain can spread throughout the affected muscle.

Nearly everyone experiences muscle pain from time to time that generally resolves in a few days. But people with myofascial pain syndrome have muscle pain that persists or worsens. Myofascial pain caused by trigger points has been linked to many types of pain, including headaches, jaw pain, neck pain, low back pain, pelvic pain, and arm and leg pain.

Treatment for myofascial pain syndrome can bring relief in many cases. Treatment options include physical therapy, trigger point injections or medications.

Myofascial pain syndrome is a chronic form of muscle pain. The pain of myofascial pain syndrome centers around sensitive points in your muscles called trigger points. The trigger points can be painful when touched. And the pain can spread throughout the affected muscle.

Nearly everyone experiences muscle pain from time to time that generally resolves in a few days. But people with myofascial pain syndrome have muscle pain that persists or worsens. Myofascial pain caused by trigger points has been linked to many types of pain, including headaches, jaw pain, neck pain, low back pain, pelvic pain, and arm and leg pain.

Treatment for myofascial pain syndrome can bring relief in many cases. Treatment options include physical therapy, trigger point injections or medications.

Myofascial pain syndrome is a chronic form of muscle pain. The pain of myofascial pain syndrome centers around sensitive points in your muscles called trigger points. The trigger points can be painful when touched. And the pain can spread throughout the affected muscle.

Nearly everyone experiences muscle pain from time to time that generally resolves in a few days. But people with myofascial pain syndrome have muscle pain that persists or worsens. Myofascial pain caused by trigger points has been linked to many types of pain, including headaches, jaw pain, neck pain, low back pain, pelvic pain, and arm and leg pain.

Treatment for myofascial pain syndrome can bring relief in many cases. Treatment options include physical therapy, trigger point injections or medications.

I agree with January that costochondritis is probably accountable for your chest pain. Did you tell anyone that you have been diagnosed with Fibromyalgia (FMS)? It is always better to be safe than sorry when it comes to chest pain. Costochondritis is a common problem among people with FMS.

Also, that "crawly" feeling that you decribe on the back of your head is probably nerve pain or nerve related. Gabapentin is usually prescribed for this issue.

It’s been 20 years since the American College of Rheumatology (ACR) established the first diagnostic criteria for fibromyalgia. Now the ACR has proposed new diagnostic criteria, and gone is the requirement for tender points, a factor that often proved to be a point of contention among physicians.

The National Fibromyalgia Association reports that about 10 million people in the United State have this common chronic pain condition, and an estimated 3 to 6 percent of the world’s population is affected. Although 75 to 90 percent of those with fibromyalgia are women, the syndrome also occurs in men and children of all ethnic groups. Diagnosis is typically made between the ages of 20 and 50, but because incidence of the syndrome increases with age, about 8 percent of adults 80 years and older meet the ACR criteria for fibromyalgia.

Of course, that would be according to the old criteria; it remains to be seen if and how the numbers will change should the new criteria be adopted. One significant feature of the proposed guidelines is that they “recognize that fibromyalgia is more than just body pain,” said Robert S. Katz, a rheumatologist at Rush University Medical Center and one of the criteria’s authors.

Katz believes the new criteria, which include symptoms that are common to the syndrome such as fatigue, cognitive problems (“fibrofog”), and sleep disturbances, will help physicians make a diagnosis, and “a definite diagnosis can lead to more focused and successful treatment and reducing the stress of the unknown.”

The unknown is a hallmark of fibromyalgia: its cause is unknown, there are no lab tests to detect it, the pain and fatigue have no apparent explanation, and patients typically experience many other symptoms as well, with unknown causes.

The previously established criteria for fibromyalgia require patients to have widespread pain that has lasted for at least three months in all four quadrants of the body. They must also have moderate pain and tenderness at a minimum of 11 of 18 specific tender points on the body. These criteria do not consider the other major symptoms of the syndrome, and also are not sensitive to gender differences. “The tender point test also has a gender bias because men may report widespread pain, but they generally aren’t as tender as women,” noted Katz.

The tender point factor is also problematic because many doctors do not use this test or are not checking the tender points properly. The new proposed criteria provide a more standard set of symptoms that are more reliable for diagnostic purposes.

Elimination of the tender point test has made room for a widespread pain index and a symptom severity scale. The pain index involves use of a checklist of 19 specified areas on the body where patients can report whether they have felt pain in those locations within the last week.

Symptom severity is determined using a rating scale of zero to three, with three being the most severe. Patients will rate the three most common symptoms besides pain--fatigue, waking unrefreshed, and cognitive symptoms—and can rate other symptoms such as dizziness, irritable bowel syndrome, and depression as well.

Based on the proposed criteria, a diagnosis of fibromyalgia would be made if a patient had seven or more pain area and symptoms severity score of five or higher; or three to six pain areas and a symptom severity score of nine or higher. The new criteria still require that the symptoms be present for at last three months and that there is no other condition that could explain the patient’s pain.

Over the past 20 years, scientists and clinicians have come to know more about fibromyalgia, although the syndrome still remains somewhat mysterious. The new proposed diagnostic criteria are a reflection of the shift in understanding about fibromyalgia and will hopefully, if adopted, enhance the ability of physicians to make an accurate diagnosis and begin patients on an effective treatment program.

I hope that this information is helpful to you. Take care.

 

January - April 22

Thanks fantod, I didn't know they were revamping the criteria for FMS - it's about $*%& time!!

I am becoming more convinced that, for a certain percentage of us, there is an infectious agent involved - and that when treated with antibiotics or antivirals, the brain fog gets better. That seems to indicate some form of brain infection to me. I am very intrigued by the connections I've found to mycoplasmas and Lyme Disease. Also to herpesvirus (which occurs in at least 8 different known forms, and probably more yet to be discovered). This virus attacks the central nervous system (including the brain) and causes pain. There are a few people who are now evaluating infectious agents in FMS, and treating accordingly - like Dr. Dan Dantini.

I see a lot of people mentioning they have been diagnosed with Epstein Barr Virus (EBV) - which used to be known as mononucleosis, or mono. This is a herpesvirus. It's a flu-like illness - and you would only know it was EBV if your doctor thought to check you for it - and if the lab did the test correctly. I dragged around for 6 months in my 30s before my dr. tested me - and it came back positive. But I was never treated with antivirals back then.

Another one is "walking pneumonia" - which is now attributed to infection with a certain type of mycoplasma. They are very hard to diagnose and to treat. Most of us just get a "flu" and suffer through it, but we don't go in for testing to see what it really is. When I was a young teen, I had a "flu virus" that put my fever up to 104 - very serious. The health department took samples of my blood, but nobody ever figured out what it was. And I recovered.

Underlying it all is the damage to the immune system that occurs from our nutrient-poor, acid-forming diets, and maybe a genetic susceptibility in some of us which makes us more allergic. Since our bodies aren't healthy, we can't fight off the many infectious agents we encounter, and we eventually collapse under stress.

I just wish they would put more research money into these areas - because here lies a CURE. Right now, the "accepted" treatment is medication that dulls the brain signals for pain - taken every day forever, and most of us still feel awful. Medication ALWAYS comes with side effects like liver and kidney damage, and erosion of the stomach lining, etc. etc. I REALLY don't like antibiotics and antivirals -- but at least they are relatively short term treatments that hold the hope of a permanent cure. Maybe we could all at least ASK our doctors about this approach and raise their awareness?? ASK if they will test us for Lyme, EBV and other herpesviruses and mycoplasma?? Since fibro awareness day is coming up, I wonder what we can all do?

And to steal a phrase from fantod - "here endeth my rant!" : )

 

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