Strange CRPS Stuff…

For this post, I would like to discuss the odd symptoms and oddities associated with CRPS or medications.

I know I have some strange things going on, although they are normal for CRPS patients, it’s still strange as all heck. I really would like comments on this one, feel free below to leave a message, if not that’s cool too.

  1. Spasms- I have had them for some time on and off, but the past few weeks, today is 4/14/17, have been really bad. They are almost non-stop, jerking me all over the place. They may be just small twitches of full body spasms. They are not just in my affected left foot and leg, but all over. It makes typing fairly difficult, my hnads just type what they want sometimes. I am leaving the spelling of hands in the previous sentence like it is to showcase a spasm. Not messing aroung, a spasm did that. There is another one, ‘around’. But seriously, they get so annoying sometimes, and I just get overwhelmed and freaked out by it. Is this my life?
  2.  Sitting or standing in one position- This isn’t so much as symptoms as much as they are just weird. Sitting or standing suck for more that 10 or 15 minutes at a time. I have to lie down or move into other positions. I went to my niece’s dance performance and I sat for 2 hours, I thought I was going to die. Not only does being in one position aggravate the pain, but then I start feeling anxious and I need my own space. There are too many people, I need to get air. I hate it.
  3. Sound- During the dance performance, the loud music was too much too handle. We left the dance performance and went out to dinner, sat in the bar area, with tv’s on, loud people and crowded. I thought I was going to lose it. Keeping a brave, happy face on is next to impossible, but I just want it to be normal for me and my family. The sound from the entire room just resonates through my body, I can ‘feel’ every sound, it’s like…I don’t know how to describe it, it just doesn’t feel good. Any loud sounds, I cannot deal.
  4. Water- Taking a shower is miserable! The water is always too hot or too cold, I can never find a good temperature for my foot and leg, I have to stick it away from the water spray. If my leg gets hit by the water, it’s like 1000’s of needles shooting at me…that’s the best I can describe it.
  5. Getting comfortable while sleeping- I CANNOT GET COMFORTABLE when sleeping. My leg needs to be under covers, then out of covers, then under covers, etc. I feel like that is all I do until I pass out from exhaustion. There is just no relief from this.
  6.  Forgetting where I am- There have been a few times that I have been in an area I am familiar with, but I don’t recognize where I am for 5 or so minutes. It’s horrifying.
  7. Not sure, I will add more as I remember things. I have to stop typing right now, sorry.
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Comments 25

  • Spot on!
    I suffer from the same odd stuff. I have CRPS since an accident 2011. I have spasms, can’t sit or stand for more than 10-15 minutes, the water from the shower feels like fire, vibrations are terrible, it is really difficult to get some sleep and many more strange stuff.

    • Isn’t it awful?! I sometimes write my blog posts over half a dozen sessions. My memory goes, concentration, no drive….crazy.

    • All this then add the crazy sweating, hot and cold, the kmife that starts ripping through you at anytime. Like walking, stting, laying in bed. Grrrrr its so frustrating when you dont know what oddity is going to rear its ugly head at any given moment along with the pain that you never know which kind is going to show. It could be burning, stabbing, pins and needles, etc.or all.

      • When asked what it feels like, my response takes like 20 minutes to explain. Of course, with the memory loss, I forget sometimes how it feels, 😂

  • Christie may have told U about my husband Uncle Rudy falling out of a ceiling at work in 1991! He’s had 12 back surgeries & both knees replaced, radiation & chemo,& now dementia! Where I’m going with this is he has the same problems,left leg jerking, burning pain on left side above waist…had problems walking on concert floors at work! He takes medication for these problems…helps!!! U or Christie can call & I can tell her what he takes! Will say prayers for U!

    • Peggy, thanks for visiting my site. Christie and I have spoken about Rudy. I am so sorry you have all that to deal with, we send happy thoughts your way. I am sure you have SOME stories to tell about your adventures(makes is sound good, lol)

  • Add to that the following: 1. Night sweats – at times so bad I have to change sheets & PJs! Have move a hair dryer next to bed to ‘dry off & get warm”. 2. Edema – lower legs especially, but on bad days my whole body swells. 3. Burning limbs – like on fire burning, followed by numbness or very sharp tingling. You are SPOT ON with the others! So glad to make your acquaintance Jim! I need a fellow CRPS suffer to discuss the weird sh** that comes along with this disease…and the drugs that ‘treat’ it. Not sure what’s worse… the disease or the drugs…but as long as the pain subsides I’m a happy camper.

    • Hi Nancy, I appreciate you checking out the site. I think I should write a darn book sometimes and just call it “CRPS Sucks and it’s Freaking Crazy!” Sometimes, I start freaking out because I think I might have a new symptom or an old symptom that has changes or something!! Sleep is such a chore, I used to LOOOOOVE sleep, no longer! This whole disease is just a serious mindf**k. Thanks so much, you brought a smile to my face, and those are real hard to come by these days.

  • Night sweats? Oh yea!! Have moved a hair dryer next to bed its so bad. Usually have to wash PJs daily and changes sheets every 2 days. On bad nights entire bed is soaking wet.

    Ever experience edema with affected limb? That’s another symptom of CRPS…as well as drugs to treat!

    • I swell so bad, my edema has edema, lol. The hair dryer is an interesting idea, I have not thought of that. I use a fan, hot, cold, hot, cold……on and freakin on!!!

  • I have it in right leg and foot and can relate to all of the above. I don’t even attempt to shower now days (I’m not smelly….honest!) It’s just easier to stick a leg out of the bathtub….strangely useful for shaving haha! …the twitching and jerk in oh my. I just wish it would give you a warning first! Scares me as much as it does my partner, who frequently ducks out the way while watching TV. Hot sweats…..a walk from sofa to loo will bring about a torrent of sweat like I’ve just completed a loo marathon! As for simple standing…five minutes max or my leg will start a tremor thing that makes a twerking Beyonce look bad. There is so much more as you said. Good fun these rare illnesses.

  • Oh yes laughing is the best medicine!! I have found that green tea with fresh ginger root and lemon really help my edema go down. You can drink it hot or cold. I need to add honey or sweetener or I can’t drink it. A friend told me about this – and have found it works!

    And Jim – if you were a woman and didn’t have CRPS your symptoms are that of menopause! LOL 😜 Me too I guess! So glad to hear I’m not the only one putting up with Night sweats or edema! Thank you both for sharing!

  • I completely agree with your crazy symptoms and love the idea of “CRPS Sucks and it’s Freaking Crazy!” I too have all of the above except for the shower spray. A shower actually feels good to me but is exhausting. I don’t shower daily anymore and need a rest afterwards. Sweating after a shower is so problematic. I do struggle with rain, it feels like burning nails being shot at me, really sucks. I do have spasms. I take Inderal for the hand spasms/shaking. I couldn’t type or hold a pen, so I get it. Night sweats, covers on, covers off, just more of the fun. Standing and sitting are very difficult, when in crowds, my kids performances, I often take an ativan. I don’t feel so freaked out by people touching me and the sounds are more tolerable. The drums in our church service resonate through me as does thunder and wind. I also struggle with typing too much, it hurts. I get to the point where my hands freeze/stiffen up and they are done. Edema and inflammation too, mostly in my feet and hands. Keep writing when you can. I have just started sharing my stories and it is more helpful to my mental health then I expected.
    allison
    fb @ridethiswave17
    https://sites.google.com/a/the-morris.net/letsridethiswave/home

    • Allison, thank you. I will hopefully write again, I just need to clear my head. I can’t concentrate at all lately, it’s so frustrating. It all comes in waves, so hopefully this with give way to some other combo of pure fun, lol! Even just writing this paragraph is tough, boooooo. Thanks for reading.

  • Words out of my mind! I used to love showers, now I have to talk myself into them almost as much as my kids!

  • I’m having a rough time dealing with Craps right now and want too thank you for listing your strange symptoms. I have the “typical” symptoms, pain, burning, spasms etc, but I thought I was going crazy because sound makes me hurt so much. I haven’t told my doctor about this or how my body reacts abnormally to certain things. Again, thank you

    • You are welcome, but no need for thanks. The sound sensitivity is a real strange one, it takes some adjusting and getting used to.

      • This symptom has completely caught me off guard! I’ve had RSD for 3 years now in my left foot & lower leg. Loud sounds make me hurt all over!! I never knew until recently this was from this horrible illness. My family thinks I’m crazy when I tell them at concerts or loud stadiums how much the sound hurts me.

        • Yes, it is a strange one. Along with that is the fact that noises and too many voices are just overwhelming, I get 😕.

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