I remember when I was diagnosed, the neurologist told me I had nothing to fear in the way of pain. “Multiple Sclerosis doesn’t cause pain,” he assured me. Did I mention that he’s my FORMER neurologist??
I don’t know if it was the tingling pain, the searing pain or the shooting pain that presented itself first, but either way – HELL YES, MS PAIN IS REAL!
I’ve heard from other FUMS’ers that they, too, have been told that there is no pain related to MS. I don’t know where the medical community comes up with this fallacy or how it behooves them to perpetuate that myth, but I hear it quite often. Well, I’m here to tell you – don’t believe it. MS pain is real and all too prevalent. So prevalent, in fact, that there are definition of various types of MS pain. Let me give you a little glossary of terms:
Lhermitte’s sign (lair-meetz sahyn) – this is that “electric shock” deal that runs from the back of you head down your spine – particularly when you bend your neck forward.
Dysesthesia (dis-uhs-thee-zhuh) – this is that burning or aching nerve pain that likes to settle in different areas of your body – especially at night. Did I mention it tends to be constant? It’s particularly fun when the “affected limb” feels cold too. Good times, good times. BTW, the “MS Hug” and that intense itching thing are also classified under the “Dysesthesia” column.
Trigeminal Neuralgia – “It has been described as among the most painful conditions known to humankind.” It’s intense facial pain that’s often misdiagnosed as TMJ or other dental issues. This may be the mother of all MS pain. None of them are good – but this might be the worst. It affects mostly women and is more typical found in people over 50. Did I just mention I had a birthday recently?? Happy 50th to me!!
Spasticity (you’ve got the pronunciation, right?) – this is where the muscles tighten to such a degree that it’s like a knot in whatever set of muscles is affected.
Bugcrawlingomania – okay, I made this one up but – you know what I’m talking about, right? When it feels like there are bugs crawling on you and you swat at “them” repeatedly, bringing about further pain and suffering.
Greased Lightening (again, you got this one, right?) – this is where a lightening-like shock hits you – seemingly out of nowhere – and shoots from one area (i.e., your head) to another (i.e., your toe). You don’t dare move or breathe for a moment in sheer terror it’s going to come back.
This is certainly an incomplete listing of all of the different types of MS pain, but I wanted to get it started. Also to be included would be headaches, bowel and bladder issues that result in pain and let’s not forget the emotional pain caused by MS.
I’d love to hear your experiences and any additions you’d have to this list. Please leave your two cents worth in the comments section below this post. And here’s a couple of links for help with the various types of pain that DO come with multiple sclerosis:
TNA- The Facial Pain Association
925 Northwest 56th Terrace, Suite C, Gainesville, FL 32605-6402
800-923-3608 (toll free), 352-331-7009 or 352-331-7078 (fax) or email
* please make sure you state your diagnosis of TN*
Jameson Irish Whiskey (my painkiller of choice)
Bow Street, Smithfield Village, Dublin 7
Tel: + 353 (1) 807 2348/ Email: firstname.lastname@example.org
**Special thanks to www.FreeDigitalPhotos.net for hooking us up with this great picture of a model screaming- like she has MS!!