Having had the worse two day's of my life is causing me to worry even more, as to what tomorrow may bring?
I have heard of MS pain and actually thought I had it before, but when it struck me a couple of days before, I mentioned to my husband, that I had NEVER used drugs, but at one point considered it.
If you have ever had MS pain you will know what I mean. Painful, isn't it??
I still wonder what tomorrow may bring. We never know do we?
We face each day trying not to worry about that subject, but no matter how hard we try, the thought seeps in light water seeping in a drenched wet tent. Just drip-drip-drip, driving us crazy!
Pain is only one symptom of having MS. We all worry about a day we may end up in a wheel chair, but anything is better than the pain. And I would hate spending my life in a wheel chair. OMG, I would so hate it!
I guess that there may be a couple of you out there with MS who are saying, "Pain? Whaddya mean?" However, I am willing to bet that (like me) most of you have felt pain as part of your MS experience, whether it is from the "MS hug," severe tingling sensations or optic neuritis.
The pain that comes along with MS is different for everybody, both in manifestation and severity, given that there are over 50 symptoms of MS - most of which could have a pain component. Surprisingly, it was only in very recent years that the "experts" believed that MS brought any form of pain.
Multiple sclerosis (MS) can be very painful. In fact, for many of us with MS, it is difficult to believe that as recently as the 1980s, MS was considered a painless condition. I have been struggling to figure out how or why anyone could make that claim, as pain - in many different forms - has been one of the worst manifestations of my MS. It is estimated that around 80% of people with MS experience MS-related pain at some point, and the National Multiple Sclerosis Society estimates that up to 50% of us are plagued by chronic pain.
What Does Pain as a Symptom of Multiple Sclerosis Feel Like?
Pain in MS is complicated. It can fall into one (or more) of the following categories:- Neuropathic pain
- Musculoskeletal or secondary pain
- Paroxysmal pain
Neuropathic pain
Neuropathic pain is the most common kind of pain in MS and is caused by the demyelination of the disease process itself. It can be explained as follows: Nociceptors are nerve endings that specifically detect painful stimuli. When demyelination occurs, nerve signals traveling along nerve cells may get misdirected to nearby nociceptors, which mistakenly communicate pain signals to the brain. Allodynia: This is a particular type of sensory symptom that is in result to a stimulus, such as a person’s touch or even clothing or bed linens touching their skin. It is stimulus-dependent and only lasts as long as the stimulus is present. Allodynia is usually a short-term problem.Tic Doloreux: Trigeminal neuralgia, often called tic doloureux (French for “painful twitch”), is perhaps the most intensely painful MS-related symptom. It can be described most commonly as an intense, sharp pain occurring in the lower part of the face (often triggered by chewing, drinking or brushing one’s teeth). The most intense pain from this is short-lived (from a few seconds to up to two minutes), but can result in a more constant burning or aching. Read the full article: Trigeminal Neuralgia as a Symptom of Multiple Sclerosis.
MS Hug: Like many MS symptoms, the “MS hug” feels different for different people – it also feels different in the same people on different days or at different times of day. It can be: felt anywhere on the torso, from the waist to the shoulders; localized (in one small area) or encircle the body; intermittent or constant; felt as sharp pain, dull pain, burning pain, tickling, tingling, a crushing or constricting sensation or intense pressure. Read the full articles: Multiple Sclerosis “Hug” or Girdle-Band Sensation and Tips for Dealing with the MS Hug.
Dysthesia: Usually this refers to a situation where a normal stimulus, such as a light touch, is perceived as painful or otherwise unpleasant, such as burning, itching or prickling.
Parasthesia: This feels like numbness, pins and needles, burning, severe itchiness, tingling, buzzing or vibrating sensations. Although often this is described as extremely annoying and unpleasant, occasionally the sensation can be so intense as to be painful. Read the full article: Numbness and Tingling as a Symptom of Multiple Sclerosis.
Headaches: People with multiple sclerosis are much more prone to migraine-like or cluster headaches than people in the general population. Read the full articles: Headaches as a Symptom of Multiple Sclerosis and Treating Headaches in Multiple Sclerosis.
Optic Neuritis: Most people with optic neuritis (about 90%) experience pain when moving their eyes. This pain usually subsides after a couple of days, even if vision is still affected. Read the full article: Optic Neuritis as a Symptom of Multiple Sclerosis.
Musculoskeletal or Secondary Pain
Also called nociceptive pain, this is usually a result of the symptoms of MS, such as spasticity, weakness, immobility or problems walking, and not the disease process itself. Some examples of this are: Joint Pain: Many people with MS feel pain in the joints of the hips and knees due to imbalance and change in gait.Stiffness: A person with MS may experience stiffness in the legs, arms and hips due to immobility.
Back Pain: Back pain can be the result of an unsteady gait, immobility, trying to adapt to the annoying feeling of the MS hug, sitting for extended periods in wheelchairs or any constant adjustment in movement or position as a result of MS symptoms.
Pain from Spasms: Flexor spasms cause a limb to contract, or bend, towards the body. This can make the limb feel like it has a constant cramp or dull ache.
Paroxysmal Pain
This refers to pain that has an acute (or sudden) onset, stays for just a couple of minutes, then fades rapidly or disappears completely. (Read the full article: Paroxysmal Symptoms of Multiple Sclerosis.) However, there may be residual or lingering pain after the episode. Painful paroxysmal symptoms include: Tic Doloreux: See above.Extensor Spasms: Extensor spasms are when a limb, usually a leg, stiffens and the person is unable to bend the joint. These cause the limb to jerk away from the body. Extensor spasms are usually not very painful, but can be forceful enough to make people fall out of their wheelchairs or beds.
L’Hermitte’s Sign: This is an electric-shock type of sensation that runs down the spine when the head is bent forward.
My MS Experience
We all have our good days and our bad ones. For me, the good days are the ones where I don’t have a symptom that was bad enough to be memorable a week later (as opposed to just those kind of yucky ones that we have learned to live with). I can say that some of my pain symptoms have burned themselves into my memory so well, that I can remember them years later, including the specific circumstances of where I was and what was going on when I felt that degree of pain.Since my MS diagnosis, I have experienced these the most:
- Excruciating “hard-to-catch-my-breath” pain from the MS hugs I have had.
- Dull, achy pains in my legs.
- Pretty severe dysthesia, as well as allodynia, including episodes where my clothes touching my legs felt like stinging insects. "I HATE THIS TOO"
- “Screaming-out-loud” (literally) in pain.
- Facial pain
- Migraine headaches, which I'm still trying to find a fix for? Is there one?
- Severe spasms
- Fingers locking up and being unable to move them.
- What I call, hot spots in my legs and arms, and my feet, they burn like they are frost bitten most of the time.
I just hope I'm wrong, that as your reading, your thinking, WOW, I'm glad I don't have that...... ME TOO!!
Sources:
Alex D Rae-Grant, Nancy J Eckert, Sharon Bartz, and James F Reed. Sensory symptoms of multiple sclerosis: a hidden reservoir of morbidity. Multiple Sclerosis. Jun 1999; vol. 5: pp. 179-183.
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