This blog is actually more for those of you who are fortunate enough to not have Fibromyalgia. Those of you who have Fibro most likely don’t need any more “reinforcement” of what you’re already dealing with but maybe it will help if you show this to those you love, your colleagues, friends or health care providers. It feels pretty miserable dealing with the day to day pain of Fibromyalgia. People that are Fibro free often have great difficulty understanding what we go through. I would like to explain to anyone out there that does not have this condition what it is like to live in the “Fibro world”.

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.

There is a huge misconception that still exists when it comes to understanding the degree of pain people with Fibromyalgia experience. The reason for this confusion is that there are actually 2 separate terms used to describe levels of pain. The term “pain threshold” defines the level at which the body first perceives a stimuli as being painful. The term “pain tolerance” has a completely different meaning and basically defines how much pain a person can actually take without breaking. We can think of tolerance as the “acceptance level” of an existing pain.

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.