Hi,
CRPS in right leg from a trip and fall on the job over 3 years ago.
In addition to the burning pins and needles and feeling like a hammer is pounding on my knee I'm now experiencing the feeling that a bug is crawling up my leg. Of course nothing is there.
Has anyone else experienced this?
Hi!
I have a very similar situation. Fell on the job 3.5 years ago and have CRPS in my right leg from the fall. I just started experiencing this same sensation a free months ago. It's so weird, and I think, people must think I'm nuts, I'll be sitting there and then all of a sudden feel like I have a bug on me and am brushing imaginary bugs off my leg. Sometimes it goes on like that for an hour, then slowly stops.
Oh yes, regularly brush away non existant bug crawling up my leg. In the dark, could swear it’s there but mine started in my back, twitches, pins and needles, intense heat when it’s in fact cold. But the crawling is wierd .
Thanks Laura, good to know I'm not alone.
Hi All
I've certainly had that sensation as well..4yrs into a CRPS diagnosis left arm from herniated disc at C5/6, spread to left leg within a year..I also sometimes feel like a drop of cool water has landed on my leg. Was standing at a checkout and was sure a drip had fallen from the ceiling .. probably looked a little off looking up at the ceiling for 10 secs ! No water to be found..happens all the time now.. neuropathic pain is so complex!
You’re right, it is complex. The drop of water happens to me,just on my left leg and foot. It feels so real.
Andrea! I forgot to say that! I also get the drop of water thing.
Hi,
I saw that you already got another one of us saying that you are not alone in that creepy-crawly sensation...I've seen mentions of this in the research articles online, just twice, but it does happen. I never mentioned this to any of my doctors or nurses (and I am a nurse!) because it only happened fleetingly, and um, mostly because I thought they would think I was nuts, and for about the first year after my surgery for the work injury to my left knee, they all thought I was nuts to a greater or lesser extent anyhow, so I didn't want to add fuel to the fire...Or end up in a rubber room somewhere, like Jack Nicholson in "One Flew Over the Cuckoo's Nest".
There's some interesting new research coming out as well, on the central nervous system side of things, that suggests that just like how sometimes you have pain in your extremities but they are strangely numb, too, at the exact same time: You can also basically have these mild psychotic-type delusions related to your physical sensations propagated by your damaged nerve endings to your central nervous system: Think of it as faulty input into the central hard drive with is your brain. In the absence of reliable input, a smart "machine" will start trying to fill in the blanks with stuff that could be a more or less plausible explanation for the sensations you are "feeling". In the case of bugs crawling under your skin, I think most of us agree that one is less plausible in a first-world country, at least, but you get the idea.
So hang in there. You are not losing it; it's just part of CRPS's rich tapestry. And yes; I feel pretty stupid even saying that
Sabrina, I also think I'm seeing things. I swear my dog just came in the room and realized she's been next to me the whole time. Makes me believe I'm getting crazier every day.
You and me both, girl...
Except in my case we have cats instead of dogs
One morning in June, I was still half asleep, eyes closed, and I distinctly felt a cat jump up on my bed, as in I felt the mattress depress in two different places (like front and back cat legs), and then the mattress depress again, as in fat cat lying on my bed.
Minutes later, I open my eyes and realize my bedroom door is still shut and latched, my husband isn't home (eliminates any chance that he opened and then shut the door for some reason, which he never does anyway but at that point I'm kinda grasping at sanity straws).
There is no cat on my bed. There is no cat in the front rooms of the house; my husband had fed them and left them to play in the morning sun of the enclosed back porch, off our kitchen.
My brain also "helps" me by supplying meaning if I don't right off the bat recognize a word or a visual object: A sofa cushion can easily become a cat for a second or two, or vice versa. I may interpret a word as being in another language, or being a sort of funny, nonsense, Dr. Seuss-type word. I may arrive at a different meaning than the speaker intended.
The first few times this happened, I just went in my room and quietly cried.
Then I decided that just like the pain of CRPS, the delusions/hallucinations are not the real me; it's sort of like I'm Drivin' on the Freeway, of Love in a Pink Cadillac (props to Queen of Soul Aretha Franklin, y'all), except that in my case, it's more like the real, core "me" is Drivin' on the Freeway of Iffy Sensory Input in my Loopy Cadillac.
Over the past couple years (original injury 03/2015, surgery that rocked my world, and not in a good way) 4 months after that, I've learned more and more, it doesn't do any good to panic, or any good to be mad at your employer or their attorneys or your doctors (or their doctors). The only thing that's going to keep you driving on that highway of meaningful life at all, is gratitude, and the ability to forgive, forgive, forgive. And every day, if you can do a little something for you to move things forward in any way at all, and something for another living creature to make their life better, and something for the planet, even if it's just composting this morning's banana peel or coffee grounds, you are filling up your gas tank of contentment and well-being, so you can keep going, and keep fighting the good fight.
Better treatments will be here not just in our lifetimes, but in the next 5 years, I'm betting.
Onwards and Upwards!!
Sabrina,
I love the humor you find in the ghost kitty jumping on your bed!
I've always believed that the spirits of all the cats that once lived in this house with me are always around but yes seeing and feeling them is a whole new experience
Maybe since my injury I've become more sensitive to spirits! Maybe it's just CRPS.
Being positive is really tough. Having had zero income for 3 years has resulted in stress and anxiety (as well as all bills now in collections)so it's the hamster wheel I'm on right now. Stress and anxiety when the pain is too much to handle, stress of how bills are going to get paid and pain again because the stress and anxiety triggers the pain all over again.
Always grateful to know I'm not alone and i'm not crazy.
Right there with you, girl.
We are in much the same situation; I'm pretty sure for the last 3 years, the insurance company was just hoping that I'd recover spontaneously (statistically, after the first year it's pretty unlikely that would happen), or maybe they were kinda hoping that I would just drop dead, so they wouldn't have to deal. Sounds bad, but when I did a brief stint as a work comp case manager, I actually heard people on the defense (read: insurance carrier and their inside and outside legal counsel) mumble stuff like this more than once.
I am in absolute agreement about the peculiarities CRPS; once you get the central nervous system sensitization part of this thing, your connection to this particular reality, dimension, plane, whatever you want to define it as...changes profoundly.
Have you ever read anything by Susun S. Weed? She gives a good explanation of the typical categories of deep, inner changes reported by women who have transitioned through menopause or had some other life-transforming event such as a critical illness, a personal tragedy etc.. She calls these women Crones/wise women, and says they have "walked with death".
Whether you come at this in a faith-based way, a science-based way, an intellectual way (say, you read Aristotle and other ancient or modern philosophers), or a nature-based way as Susun Weed describes, you end up arriving at the same destination in some significant ways:
You are fundamentally changed from the person you were before CRPS.
Some of these changes are in your central nervous system.
Over time, it becomes apparent that not all of these changes are negative.
You learn to tune out some streams of sensory input (or plain can't access them, for whatever reason ).
You learn, slowly and almost imperceptibly at times, but later on, sometimes in a mind-bending rush (!) that the way you experienced this reality for the first part of your life before CRPS, is in some profound ways, not the way you experience it now.
Even though the physical pain, the anxiety and fatigue/depression part of this thing continue to be challenging, I can tell you this for sure, knowing you and others on this forum understand this better than even those closest to me:
I am grateful. I have become a better person; a less angry/more loving and accepting person. I am better able to look at other living beings with eyes of compassion rather than judging all day/every day, about every dang thing. I don't know if that would have happened if I hadn't gotten a whopping case of CRPS.
Blessings on your journey. Here for you. Hope today is a better day for you!
Yessss! When I was flaring, during the first few months after I got the symptoms in just my left lower leg, I would be doing dishes or whatever, and would actually be checking to see if I had splashed a few drops of water on my leg from the faucet!! Good to know I'm not the only one!
Don't forget some of your symptoms can be drug induced, assuming you are on any of the myriad of lovely drugs that we get put on. I like to call them my "fat and foggy" drugs, because that is what they make me. I am scheduled for an intrathecal pump placement next month to hopefully get off the oral meds and be on a much lower dose of them by way of the pump with less side effects or on different meds altogether without the fat and foggy side effects at all. Yep and then I have a bridge in Brooklyn to sell ya.... but come on, one can always dream LOL. I had my trial and boy did I get FOGGY and also lot my equilibrium for several days but my PM doc assures me he gave me a big dose so I would have a positive trial so my insurance would OK the pump.Isn't it nice that insurance makes you go through several days of hell just to make sure you really need a pain pump? Things are really screw up with the US insurance conglomerate. Oh well, it is all behind me now and hopefully I can really get close to my dream, have some decent pain relief and not be nodding off at 3 PM.
Lynn