Have you ever had the flu? I am sure many of you have. Do you remember that severe achiness throughout every muscle of your body? Do you remember having the type of pain where your skin feels sensitive to the slightest touch? Of course you remember not wanting to get out of bed because of the severe fatigue associated with feeling so sick. Well, Fibro pain often feels a lot like that. The difference however, is that with Fibro the pain doesn’t last only a few days or even a week. It is daily, chronic and unrelenting. For those of you who are fortunate enough to have never had a flu, maybe you have pulled a muscle at the gym. Have you ever strained a hamstring or maybe your low back and felt muscle spasm as a result? Even those of you who have been fortunate enough to have never strained a muscle may have experienced the muscle fatigue and achiness from just working out. You would then understand that really achy feeling you have in your muscles the day after you exercise hard. You wake up that morning and feel really sore and stiff. You can barely move your muscles and you may even have difficulty getting out of bed. You hurt so much you don’t even want to go to work but then again you know that the next day you will feel better. You may take a hot shower, stretch a bit and feel somewhat relieved. In a certain way, having that type of “post exertional” soreness can actually feel good because you know that you have worked your muscles sufficiently to be able to see and feel results. You also realize that within the next day or two you will be back to 100% and actually feeling stronger and healthier than ever. What a difference this type of pain is from Fibro.

The muscle pains and other symptoms I just described are only a very small portion of all the symptoms one can experience with Fibro. Unfortunately someone with Fibromyalgia, unlike the person who has the flu or the person who strains a muscle, cannot look forward to feeling “normal” within the next few days. That is where pain crosses a certain threshold and we begin to define it as “suffering”. When a person injures themselves and or experiences an acute pain, the mind is able to process the injury and realize that it will be a temporary condition. An example of this would be someone who stubs their toe. They may yell and scream and hop around for a few minutes but as soon as the initial pain fades a bit, their mind assesses the injury and they then realize that it will soon get better. That is acute pain and even if the toe were fractured, the mind can deal with that knowing that in a few weeks relief will come and all will again be back to normal. That is true “pain” and even though it can be severe, it is not really considered “suffering”. Suffering comes from having unrelenting pain and often not having a full understanding as to the reasons why. It is difficult for the mind to accept this type of pain. You didn’t strain your back, you don’t have the flu and you didn’t stub your toe. Also, it is not going away. It is there every day. To compound all this, many patients that have Fibromyalgia often get little understanding or support from those most important in their lives. Maybe this is because their condition is even more confusing for those around them that have little if any idea what kind of pain they are feeling. Also people with Fibro often look well enough so they often are not even beleived. This combination of having unremitting severe pain and also not being given any credence or understanding is what often leads a Fibro patient to go from pain to true suffering. Suffering can lead to secondary depression which will likely increase the already existing symptoms. This is such a viscous cycle and is the main reason why I feel education, advocacy and understanding is vital for not only those that have Fibromyalgia but for those who mean the most to them. The people that love those with Fibro must understand what they are going through. This point can not be stressed enough.

On a positive note, there are many things Fibro sufferers can do to help manage their conditions and lead healthier, happier lives. Most of our patients at FibroCareCenter that are motivated enough to make certain lifestyle changes and follow our specific recommendations often find they will have less pain, less flares and better overall control of their condition. I have always believed that “knowledge is power” and I want all Fibro sufferers to know that the downward spiral of symptoms and suffering can be reversed.

People that suffer with Fibromyalgia have a low threshold and most often a very high tolerance to pain. This is partly true because they have been found to have greatly increased levels of substance P in the cerebral spinal fluid. Substance P is a neuromodulator (a substance that changes neurotransmitter effectiveness) that allows us to perceive a stimulus as painful. It is interesting to mention that there are actually some rare medical conditions where substance P is very low or completely absent and a person feels little or no pain. That may initially seem like a blessing but actually it can be very dangerous because there is then no “warning pain” when a critical condition requiring treatment exists in the body. Can you imagine how serious it would be for someone with acute appendicitis to not feel any pain and have the appendix rupture?

Obviously having a normal level of substance P is the ideal situation where your body tells you exactly what it should be feeling and pain is perceived at the appropriate level. Take a look at the illustration below and you will get a general idea how Substance P works. You can see that the transmission of nerve impulses and pain is quite intricate and involves many more chemicals but Substance P plays a very important role.

Now with elevation of Substance P, as in Fibromyalgia, a sensation that should be perceived as normal is felt as painful. The term for this condition of increased pain perception is hypergesia. Sometimes even a light touch on the skin can feel like burning and I have seen many patients that can’t even stand to have the bed sheets touch their legs at night. In Fibro patients a relatively minor muscle strain due to over exertion will often cause a totally inappropriate severe level of pain and then cause unnecessary muscle splinting and spasm which then has a downward spiraling effect. The body over responds due to an inaccurate pain signal caused by high substance P and starts what I call the “cascading of symptoms”. One simple strain becomes a serious of pains that can sometimes throw the Fibro patient into a severe flare.

So does this mean that Fibro patients are weak? Does it mean that we are just being hysterical with the pain and over reacting? No, actually it is usually the complete opposite. Here is where the definitions of threshold vs. tolerance become very important. Fibro patients do feel pain sooner and at inappropriate levels but, for most of us, we have incredibly high pain tolerances. The reason for this is because Fibro patients deal with some level of pain all the time. I guess you can say that we grow more accustomed to living with pain. Most Fibro patients that I counsel and treat have a remarkable way of dealing with levels of pain that would drive a “NON Fibro” person absolutely insane. This is one of the main reasons that it makes me frustrated when I hear people that obviously do not understand Fibromyalgia say that Fibro patients are just being weak or wimpy. Considering what level of pain Fibro patients need to deal with, it is surely one of the worst things you can say to them. If those accusers ever woke up in a Fibro body for even 1 day, they would likely run to the ER or beg their doctor for some heavy duty narcotics. The thing is this: Fibro people have grown accustomed to living and dealing with pain and most often accept the lower to moderate levels in silence. That is where the high tolerance comes in to play. I often tell people that we look at most of our pain like we would view “elevator music”. It just is a low level background noise and we learn how to still have a life and accept or even ignore it. Usually it is just the severe flares that make most Fibro patients really complain but at that level the pain can be completely intrusive and there is no way one can ignore it.

It would really make things a whole lot easier if the people around us that do not have Fibromyalgia could understand the difference between the two terms threshold and tolerance. Most Fibro patients are not looking for sympathy; they are just seeking understanding. I have personally observed the supreme importance of a good support system in all of my Fibro patients. You can’t expect true support unless the ones that are most important to us understand that we are coming from a position of strength, not weakness.

I have also examined, treated, advised and counseled hundreds of patients at FibroCareCenter and have observed the results by being able to follow most of those patients for many years. I hope this doesn’t seem like boasting when I make the claim that this gives me a very big advantage and also a rather unique perspective when it comes to assessing what the long term prognosis is with patients that suffer from Fibromyalgia.

Now I realize this may seem like a generalization but it is definitely my absolute observation that most of my Fibro patients are more “health savvy” than the average patient. Sometimes this is because they were undiagnosed for so long and or “blown off” by several doctors therefore had to do extensive research on their own to figure out what was going on and what to do about it. Other times it is out of sheer desperation due to the severity of their symptoms and lack of relief found with their current therapy. Local Fibromyalgia support groups, the National Fibromyalgia Association and many other organizations have been a huge help for those looking to become proactive and more educated about Fibro. The internet has also been an extremely valuable tool for those patients as long as they understand that they must go to “reputable” sites and not believe the hype that some sales sites push. Because of these reasons many of my Fibro patients have come to understand their conditions better than their own doctors. Unfortunately this can sometimes become a wedge in the doctor patient relationship. This becomes especially apparent if the doctor is unwilling to listen to what the patient has learned because they believe that they must know better. Doctors should always understand that being a “team player” is incredibly important with Fibro and that the patient who has done their research often can teach them a thing or two. After all, they have a lot at stake and pain is an incredible motivator to educating oneself. How often I hear from my patients “If only my doctor walked a day or two in my shoes they would understand”.

My point with this is that when people are “health savvy” and proactive, as with most of my Fibro patients, they often begin to lead healthier lifestyles. In actuality they are often forced because that is the only way for them to find true relief. People with Fibromyalgia usually realize that they need to eat better, reduce stress, rest more and adapt a “system” where they prevent or at the very least minimize their flares. This way of living is obviously more conducive to the avoidance of even more serious illnesses in the future. I am sure you understand this principle I am speaking of. It should be very obvious that good nutrition, being proactive and educated about health, sleeping or resting better, exercising correctly, taking the appropriate nutritional supplements and also understanding what is normal or abnormal for your own body will always lead to decreasing the risk of severe illness.

I would love to see some long term study that helps me back up my theory but I truly believe that this seems totally logical and should be apparent. While dealing with my many Fibromyalgia patients I spend a great deal of time explaining and educating them. I try to encourage them to see the bright side of this condition, as difficult as that may seem during times of severe pain. There often can’t be a 100% cure with Fibromyalgia but that does not mean that healing cannot take place. It certainly doesn’t mean that one is doomed to a lifetime of pain and frustration. When we fully understand what is necessary to manage this condition and help live a more comfortable and complete life we often become healthier overall. With this healthier lifestyle comes more balance and a fuller, richer life. To use a much overplayed cliche’ “whatever doesn’t kill you will make you stronger”. Well, with Fibromyalgia I have found this to be incredibly true with the vast majority of my patients. Once a complete understanding takes place and stronger attitudes develop, a much better sense of control arises. If people are willing to then let go of the negative side of Fibro and not dwell on certain issues that may still be frustrating, a much happier fulfilled life is possible.

I often use an expression when talking with my patients “knowledge is power”. When a person does not fully understand what is going on, there is often some fear. Fear is stressful and stress can either delay or stop any healing from taking place. This is a known physiological fact and that is why I become concerned when I hear of patients not having a full understanding of their conditions. It is also one of the main reasons why I spend a great deal of my time in the office explaining and teaching my patients exactly what is going on when they have any kind of pain. It may be a patient with Fibromyalgia or it may be a patient with a sprained lumbar spine. In either case the need to fully understand what is going on is very important.

It is truly amazing how the human mind works. The brain controls the body and thoughts have an enormous effect on brain chemistry. A very simple example of this is how quickly adrenaline is released when someone is frightened. In Fibro as in many other health issues, chemistry plays a key role in what direction the condition will take. This is the main reason why I am concerned about the communication that takes place between patients and their health care providers. When a doctor is “dismissive” of a patient’s symptoms, it is understandable that they are sure to feel an enormous amount of frustration. On the other hand, a doctor who paints a picture of “gloom and doom” or scares a patient into unnecessary testing is certainly going to cause fear and make matters worse.

I am going to make a statement that I am fairly confident is accurate; most of you who read this site are already pretty educated when it comes to Fibromyalgia. Some of you have researched this condition for quite some time and know most of the latest studies. You are to be commended and you are surely on your way to finding the proper way to manage your condition. Now, how do you bring a physician on board with you? All patients sometimes need to be reminded that they are the ones that are hiring the doctor not the other way around. You need open dialog with your doctor where questions and answers are shared. You also need enough time given for this to occur. It may be a good idea when making your initial appointment to state that you have or think you may have Fibromyalgia. You should then ask if the doctor sees patients with Fibromyalgia and if so, will there be a sufficient amount of time during the initial visit to discuss your concerns. When a Fibro patient schedules an appointment in our office they are told that they will be with the doctor for 60 to 90 minutes.

Remember “knowledge is power” and you are the “captain of your own ship”. For some of you that may be an overwhelming feeling, however, the more control you have over this condition, the more empowered you will become.

I’ve included this video which I feel describes what it is like to be not only a treating doctor but also one who has suffered and understands.