Pain and IC; a simple look at a complex issue
There is no easy way to address the issue of pain, it is a monster with a million faces, or perhaps it like a ghost because it often cannot be seen, but you know it is there. Pain is a complex and puzzling issue. Many diseases and medical conditions cause pain. The level of pain can vary from almost non at all to mind numbingly intense. For many ICers pain is a serious and prevalent factor in there IC. Some cite it as the most problematic and intense symptom that they experience.
The subject of pain can literally fill entire books if not a series of books. In this article we will explore the basics of pain and look at the relationship between IC and pain.
In terms of classification, pain is either Nociceptive or Non Nociceptive:
Nociceptive pain is pain that occurs because of some particular form of stimulation. In response your body reacts to the stimuli with specific pain receptors such as those which are triggered by extremes in temperature, movement, pressure, and chemical stimuli. In turn these receptors release substances (as such as histamine or substance P) in response to stimuli. Nociceptive pain has two sub categories, somatic pain and visceral pain.
Non-Nociceptive pain is pain that occurs from with in the body, essentially from the central and peripheral nervous systems. Pain that occurs in these systems does not have specific (known) stimuli but instead the pain is given off (created) by some form of cellular abnormality or malfunction. Non-Nociceptive pain has two sub categories, neuropathic and sympathetic pain.
Looking closer at the sub categories of pain we see that IC pain can be combination of one or more types of pain:
Somatic pain is the pain that occurs in tissue(s) such as those of the joints, bones, skin, ligaments, and muscles. This type of pain is very common it can occur in with everything from Fibromyalgia to arthritis to a torn muscle. Somatic pain is the result of receptors, known as nociceptors responding to stimuli such as temperature change, inflammation, and lack of oxygen.
The pain is typically sharp and localized (however in cases like Fibromyalgia it can occur in many spots or “points” at the same time concurrently) and it may be aggravated and heighten when touch or pressure is applied to area. Often somatic pain is short lived, such as when get a bruise. Somatic pain can rapidly decrease. Everybody has experienced somatic pain at one point or another in his or her life.
Visceral pain is the type of pain that you experience within your organs and the main cavities of the body such as the abdomen (including the intestines, kidneys, spleen and liver) the thorax (the lungs and heart), and the pelvic cavity composed of the bladder, womb, ovaries and vaginal cannel.
Visceral pain is often brought about by some form of inflammation, pressure, stretching (distension), or oxygen depletion (also known as ischemia). The pain is often that which is responsible for back pain and abdominal pain. It can be deep rooted and achy or throbbing and pulsing. Visceral pain is the most prevalent form of pain experienced by ICers. It is rarely localized (specific to one spot) and it generates strong autonomic and affective responses within your body as it is transported to the brain different than somatic pain. Visceral pain goes to the part of the brain that primarily focuses on emotion.
In turn emotions become a natural response to the pain. Some people may cry others will become upset or moody, some reclusive and quiet. These legitimate responses are not a sign of being emotionally unstable; they ate simply by-products of a deep and often serious pain.
Neuropathic pain comes from within the nervous system. Originating from either the peripheral nervous system (the nerves in the area between the tissue and the spinal cord) or the central nervous system (the nerve connecting the spinal cord to the brain). Neuropathic pain can be caused by a multitude of reasons, such as nerve inflammation, nerve degeneration (examples include stokes and multiple sclerosis), nerve pressure, and nerve infection.
As the nervous system does not contain receptors target towards pain when a nerve (or cluster of nerves) becomes damaged it is no longer stable. It (they) sends pain signals to the brain which causes you to feel pain which is commonly said to be shooting, burning or stabbing and the area may become hypersensitive.
This pain can be hard to treat, and very bothersome and taxing on the sufferer. Doctors may try to treat neuropathic pain with NSAIDS, antidepressants, anticonvulsants, topical creams, and anti-arrhythmics or in serve cases opioids.
Sympathetic pain is a commonly occurring form of pain when you fracture a bone. It stems from excessive amounts of activity in the sympathetic nervous system (this system is responsible for blood flow to tissues like muscles and skin as well s perspiration thought the skin and the response time of the peripheral nervous system), and the central and peripheral nervous systems.
A person who is experiencing this type of pain often has heightened sensitivity in the skin near the injury and in the limb when it occurred, and they may be in intense pain, requiting immediate medical treatment.
In terms of IC and pain the focal point is the bladder! For unknown reasons the bladder has become irritated and inflamed. The nerves leading up to the bladder are overly sensitive in IC patients. Though the cause of this can only be speculated. Ideas include infection, histamine release, chemical or toxins in the patient’s own urine, an auto immune response, or perhaps something unknown which is bothering and irritating the (IC) bladder.
As the nerves become more and more sensitive so does the bladder. It is hypersensitive and ICer feels significant levels of pain, even if the original cause of the pain is minimal. The longer this continues the more a patient is at risk of having changes in an area of the spine known as the dorsal horn take place. When this happens the area transmit the pain signals from to the brain separately from the bladder (a little like a “middle man”). It may account for why some ICers feel “phantom” pain after they have had their bladders removed surgically. The bladder is gone but the same pain exists.
When you are in pain however, chances are that you are not thinking about what form of pain it is. Instead you are experiencing the pain as it occurs, trying to cope with it and relieve it if possible. Every one of us has felt pain at some point be it mild or excruciating, but pain enters a different realm when it becomes long term. In other words unlike the pain of a sprained ankle, giving birth, or stubbing your toe the pain doesn’t go way, it doesn’t wear off, in fact it may continue to get more severe. This is chronic pain and it is something that many ICers experience.
Unlike acute or “normal” pain, chronic pain is stubborn, persistent, and often difficult to properly treat. Chronic pain is often due to a long term or “chronic illness/medical condition”, or the result of a previous injury. For the majority of ICers IC is a chronic ailment, and so thusly the pain they feel may be chronic as well.
Not all ICer have pain every day or every moment, for some other symptoms are more prevalent (such as urgency, burning upon urination) these patients may only have bladder/pelvic associated pain during a flare in their symptoms or when it is their period. However, for many ICers some degree of pain is present all the time. It my be mild with minimal impact on a person’s day-to-day life, for others it is quite severe, they may be in constant discomfort, requiring treatment and possibly bed rest. For others still the pain can be literally debilitating, leaving them unable to properly function, and confining them to their home or bed. Of course it always the goal to prevent anyone and any ICer from reaching this point. But it is important to know that some fellow ICers are in this state.
While acute (temporary) pain is considered normal as it is natural response to an immediate source of unpleasant (harmful) stimuli/experience. There is nothing normal about chronic pain. For those who have never experienced chronic pain it can be hard to conceptualize. Pain as you know it has always gone away eventually, But this is here to stay, a little like a stain that simply cannot be washed out of a garment.
Words like dull, aching, stabbing, burning, electric (like shock), pounding, pressure, pinching, tingling, severe and sharp have all been used to describe IC pain – both acute and chronic. Interestingly the pain that many ICers feel often seem to be present in other areas (besides the bladder) like the vagina, tailbone, pelvis, back, legs, rectum/perineum, and the abdomen. This may be the pain from the bladder radiating outwards, or it may be similar pain being felt in others areas as a result of IC.
When pain is chronic it can begins to weigh on a person. They may be losing sleep or the desire to eat. Physical activity is very difficult if not downright impossible as the pain is heightened by such strain on the body. A person may be forced to leave their job, and change many other aspects of their life. ICers with chronic pain (and Vulvodynia sufferers) may no longer be able to have sex with penetration. All these things a huge impact on your life - even if you have a good team of doctors behind you. Given the circumstance some people become understandably depressed, others simply withdrawn or irritable. Not everyone with chronic pain will become depressed however; many persevere in the face of their pain and fight for the treatment and “life” they feel they rightfully deserve.
Pain can make a rational person do crazy things, or act in ways that are totally unlike their normal behaviours. As a result some people will try “snake oil cures” with little or no real medical worth, or undergo potentially unnecessary surgeries. An entire industry of potential cure alls and quick fixes has developed, playing on the fact that those in great discomfort will do most anything to be rid of the terrible pain. This is sick, sad, and wrong. As much as you crave and deserve treatment and help for your pain these routes are not the way to go. While it fine to use less traditional methods to treat pain such as acupressure/acupuncture, bio-feed back or TENS therapy, always consult your doctor first and only see trained specialists.
Chronic pain will require medical treatment. This may be medication (oral or instilled directly into the bladder), physiotherapy, or other forms of help. As many ICers have overlapping medical conditions they may be in chronic pain for more than one reason and each of these reasons and conditions needs to be properly dealt with. Likewise if the patient has issues with their pelvic floor muscles (and many ICers do) they must absolutely be addressed and treatment attempted. Some ICers find that when they begin to treat their pelvic floor muscles as their IC improves.
While anyone who has been in severe pain will attest, you just want a pill to make it al stop (go away). But when it comes to treating chronic IC pain doctors are sometimes hesitant to prescribe strong (opioid) pain medications. You may want to be referred to a pain clinic, or doctor who specializes in chronic pain. Sadly many ICers who may legitimately require strong pain mediations for occasional usage (say during a flare) do not receive the help they need. When presenting your IC pain case, resist the urge to beg (tempting as it may be) or demand drugs, instead clearly and factually explain your pain and the effects it is having on your life. Many ICers are fully capable of using opioids reasonably, and an understanding and empathetic doctor should be wiling to prescribe (at least) limited quantities of strong pain medications, perhaps for use only during flares.
It’s important to look at other ways to relieve pain too. Alternative therapies, relaxation techniques and changes to the way you live (say adapting the IC diet) may offer some degree of pain relief. Many find that keeping a pain (and or voiding) diary is very beneficial to them and their physicians. It allows you to track and understand your pain, as well as giving you some place to vent your feelings if you so choose. There are numerous pain scales used in the medical world, but the most common is simply one that ranks the severity and intensity of pain on a scale of 0-10, with ten being the highest degree of pain. Some people like to record their pain using this type of scale. It can also be useful when describing your pain to doctors, as saying “I felt like my pain was an 8” as opposed to “it hurts a lot”, seems to convey a stronger message to many in the medical field.
Realizing that you have chronic pain is a big step. It’s completely natural to feel self pity or to dwell on the pain, it is after all there (to some degree) all the time. It gives you no break and alters your body, but it is important to try and stay positive. Realize that the pain is not your fault nor is it a result of something you have done (aka punishment). Try to talk to someone about how you feel, if you need to see a counsellor or therapist that does not mean you are “crazy” and it certainly does not mean that IC is “in your head”; not at all. Talking and discussing your problems is healthy and natural. It can help prevent or treat mild depression and perhaps bring you some sense of calm, if only from knowing that you have shared you true thoughts and feelings aloud.
Let yourself feel your emotions, sometimes you need to go someplace secluded and just scream or beat up a pillow or have a good long cry. Pent up emotion does not solve anything! Many people try to redirect these strong emotions into something positive, a sense of motivation even.
Always try to remain hopeful that your health will improve, hope is an amazing tool and anyone with chronic pain should remain positive that things might get better for them. A lot of ICers find a treatment or combination of treatments that offers them at least some relief. Others are fortunate enough to go into remission (it may be temporary though).
In order to make chronic pain more bearable you will need at least one fantastic doctor (the more the merrier though) As well chances are you will require some form of medication. This may mean NSAIDs and over the counter pain relievers and/or other more serious medications and treatments.
As a pain patient you have the right to seek and receive the best possible care. Never forget that you are not supposed to feel chronic pain, no one is. It is not natural and it is not right. You are your greatest defender and you must seek out the help you rightfully require. Do not be afraid to ask for help, and to keep asking until your concerns are properly addressed and respected. If someone you loved was in chronic pain you would fight tooth and nail for his or her relief, even in a diminished physical state why would you do anything less for yourself?
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