[Vrae]

...and I think it goes without saying, painful too!

Okay, I'm kind of all or nothing here lately on NT, sorry about that. But I do have a question for you... I really need some feedback on this if you can.

So since my horrible back surgery in 2004 and the arrival immediately thereafter of CRPS II, I have lost some feeling (again since immediately after surgery) in my right leg/ankle/foot. It's numb but I can still feel some things in the right half of my calf on my right leg and this goes all the way down to my toes. I have had spasms since surgery and progression of CRPS in that leg and with the spread I have, well, I have spasms in lots of places. The worst being my legs and lower back.

My point is this. I stretch my legs often, or at least try to because it feels good. Sometimes when I stretch the original CRPS site of my right leg, ankle, and foot it feels like it's going to get stuck!! I mean like stretch any more intensely Vrae and it's going to get stuck that way, and it doesn't have to be a full on stretch for it to feel that way. This ALWAYS freaks me out!

I am hurting today , no idea why today. The sun is shining, weather is okay, yadda, yadda. But I am, and I am spasming in both legs today too. I'm having the lovely crushing feeling like my legs are in a vice grip type pain too, and a dash of electric shock.

So I just stretched because I have been laying around today, and yikes , it felt like my shin and ankle would stick, or be stuck in the stretched position. It's another painful experience and again, always makes me wonder if I am in danger of a contractor that will never stop. Is this how contractors start in CRPS?

Spasms as of late are far more intense, frequent and freaky. I recently got a small Rx of valium, because the somas no longer seemed to be working very well at all. The first few doses (like 7-10 days) of valium I could feel improvement. Now this. What the heck else is there to try? I do hot bathes/soaks, those help some.

Is this just going to be the gig now? And what... perhaps worse? <sigh>

[catra121]

I'm sorry you are having to deal with this Vrae. I get this "stuck" feeling often...usually in my hands but have also gotten it a few times in my leg too. Lately in my hands I can actually see sometimes when the muscles spasm and then get stuck in that my hand actually starts to look deformed the way the muscles have contracted. It's incredibly painful but the only thing to do about it is to massage it out and forcibly move things back to their original position. There have been times when BOTH hands froze up...and then I had to have my boyfriend force them back into a normal position. Hurt SO bad and was an awful experience for both of us...but is better in the end than the alternative of just leaving them like that which is also excruciatingly painful (as I'm sure you know).

Following the massage and repositioning...a hot bath in Epsom salts is helpful. Doesn't really work with my hands but when I've had it in my leg...ultrasound heat therapy helps as well following a bath. I got my portable unit on amazon for about $40 and it was definitely worth it.

I have found that there are certain movements I need to try and avoid because they always result in this sort of reaction. Holding things a certain way...stretching a certain way...whatever it might be. Once I can pinpoint what causes it...I try to avoid those things as much as possible or try to find some way to mitigate the situation (flexing my hands constantly, changing positions quickly, etc).

Wish I had more to offer you...but I do understand. My boyfriend tells me to eat more bananas. I've done this...but it doesn't seem to make any difference...lol! Oh well...at least they are good for me.

[zookester]

Originally Posted by Vrae

...and I think it goes without saying, painful too!

Okay, I'm kind of all or nothing here lately on NT, sorry about that. But I do have a question for you... I really need some feedback on this if you can.

So since my horrible back surgery in 2004 and the arrival immediately thereafter of CRPS II, I have lost some feeling (again since immediately after surgery) in my right leg/ankle/foot. It's numb but I can still feel some things in the right half of my calf on my right leg and this goes all the way down to my toes. I have had spasms since surgery and progression of CRPS in that leg and with the spread I have, well, I have spasms in lots of places. The worst being my legs and lower back.

My point is this. I stretch my legs often, or at least try to because it feels good. Sometimes when I stretch the original CRPS site of my right leg, ankle, and foot it feels like it's going to get stuck!! I mean like stretch any more intensely Vrae and it's going to get stuck that way, and it doesn't have to be a full on stretch for it to feel that way. This ALWAYS freaks me out!

I am hurting today , no idea why today. The sun is shining, weather is okay, yadda, yadda. But I am, and I am spasming in both legs today too. I'm having the lovely crushing feeling like my legs are in a vice grip type pain too, and a dash of electric shock.

So I just stretched because I have been laying around today, and yikes , it felt like my shin and ankle would stick, or be stuck in the stretched position. It's another painful experience and again, always makes me wonder if I am in danger of a contractor that will never stop. Is this how contractors start in CRPS?

Spasms as of late are far more intense, frequent and freaky. I recently got a small Rx of valium, because the somas no longer seemed to be working very well at all. The first few doses (like 7-10 days) of valium I could feel improvement. Now this. What the heck else is there to try? I do hot bathes/soaks, those help some.

Is this just going to be the gig now? And what... perhaps worse? <sigh>

Hey Vrae,

Have you ever tried Baclofen? I've been having visible muscle spasms in my original site of CRPS II since the day it all began (like you upon waking on the recovery room table) and then over the past few months they became more progressive in other parts of my body (diaphragm, opposite thigh, shoulders & arms) after ruling out medications as the cause (some meds do cause spasms/tremors) we realized it was in fact the CRPS spreading/progressing and so I started taking Baclofen 1-2 10mg tablets 3 times per day. That has really helped even though they haven't completely disappeared they aren't as jerky now. The first real bad one happened while I was driving and literally scared the freakn' daylights out of me because it literally pulled my foot of the peddle and the pain was so intense I wasn't even paying attention to my driving for a few seconds.. not good. Thankfully with the Baclofen I haven't had another jerking episode like that, so I can still drive short distances.. until that no longer works

The epsom salt soaks help also and if you can massage in the areas where touch sensitivity is tolerable. Lactic acid builds up in our muscles when we stop using them which causes pain to increase so anything you can do to help rid (like with Vitamin C & regular movement as hard as that is) your muscles of this should help lessen the pain some anyhow. Wish there was more.. I so do!

Keep posting you are crackn' me up with all your gif's

[AZ-Di]

Vrae,
Sorry about the new "gig.
I have only had those spasms in my left foot (we think it's spreading there).
I stretch my foot & it cramps and my toes "stick" some curled, some straight and pulled at weird angles. The cramp gradually lets up and sometimes I can very painfully walk it off.
My hand (original site) has stayed contracted since surgery. Now, a year later and too many proceedures & P.T.'s to count I have partial movement. But what little grip I have I get mini spasms where I drop things or go to pick something up and reflex "drop it like it's hot". That's w/o pain so I'm not sure what that even is.
I have Baclofen, but I haven't been taking it lately. I will again if spasms get chronic.

[fbodgrl]

I get the stuck cramped down fingers in the RSD hand. It is horrifically painful and worse forcing them back out. They stayed in a tucked, non straight position naturally since my 2nd surgery. My spasms are generally in the upper arm bicep area. They come and go. I take flexeril at night and Valium in the day to try and keep things loose.

[Lottie]

Vrae, our stories are similar. Woke up in recovery room convinced I had a shattered ankle!! I do get severe cramps in my toes, foot and calf, what my dad used to call a "charlie horse". Standing and walking , though very painful, usually resolves that. I also get visible muscle twitches that make me crazy. Feels like hot popcorn popping inside my leg. My husband puts his hand on the muscle and puts firm steady pressure on it. I also use heating pad and warm epsom salt bath. I don't do well with Valium, it makes me too weepy . ~Lottie

[Vrae]

Originally Posted by catra121

I'm sorry you are having to deal with this Vrae. I get this "stuck" feeling often...usually in my hands but have also gotten it a few times in my leg too. Lately in my hands I can actually see sometimes when the muscles spasm and then get stuck in that my hand actually starts to look deformed the way the muscles have contracted. It's incredibly painful but the only thing to do about it is to massage it out and forcibly move things back to their original position. There have been times when BOTH hands froze up...and then I had to have my boyfriend force them back into a normal position. Hurt SO bad and was an awful experience for both of us...but is better in the end than the alternative of just leaving them like that which is also excruciatingly painful (as I'm sure you know).

Following the massage and repositioning...a hot bath in Epsom salts is helpful. Doesn't really work with my hands but when I've had it in my leg...ultrasound heat therapy helps as well following a bath. I got my portable unit on amazon for about $40 and it was definitely worth it.

I have found that there are certain movements I need to try and avoid because they always result in this sort of reaction. Holding things a certain way...stretching a certain way...whatever it might be. Once I can pinpoint what causes it...I try to avoid those things as much as possible or try to find some way to mitigate the situation (flexing my hands constantly, changing positions quickly, etc).

Wish I had more to offer you...but I do understand. My boyfriend tells me to eat more bananas. I've done this...but it doesn't seem to make any difference...lol! Oh well...at least they are good for me.

Hi Catra! Yes, me too. I also can actually see the contraction happening, and yes the area where it’s happening will look deformed. This is a very accurate description. And like you I ALWAYS rush to the area and massage it out as much as possible, or stand up if I was sitting, or move around like I have just stepped on a snake. Freaking out and in PAIN… omg, omg, omg stooooopppp! Thank goodness it’s not this crazy every time, but there’s always a residual pain of things having been or feel like they’ve been overstretched.

The spasms seem to come in many forms. From the snake jump, which to me feels more like a Charlie-house, or where it feels like it will get stuck (which looks very similar to the snake jump), to just an annoying jerking/twitching of a muscle (anywhere), or fingers, or toes. It’s bizarre.

Ultrasound Heat Therapy…. Hum, I’ve not heard of that. That sounds fantastic! Is it like a blanket or a towel? I wonder if it is large enough to apply anywhere. Again, I will Amazon that. Bananas… lol… oh yes, I have been offered AND tried this same recommendation. You’re right! they are good even if they don’t seem to do a damn thing for CRPS spasms. Lol.

[catra121]

The ultrasound is actually a device. You put conductive gel on the area (I always make sure mine is in a place where it won't get cold) and then you run the device over the area (constantly moving so you don't burn yourself). It's a deeper sort of heat...I don't even really feel like the area gets hot...but it does help. I've found that generally using the ultrasound extends the amount of relief and length of time I get relief after the hot bath with Epsom salts. It especially helpful for me with the spasms.

They used a similar device (bigger...mine is a portable version) when I did outpatient physical therapy and I found that when they did it at the beginning of the sessions that things were easier for me than without it. The routine of ultrasound at the beginning and stim with heat at the end actually did a great job at reducing my pain levels...more than any meds ever did.

[Vrae]

Originally Posted by zookester

Hey Vrae,

Have you ever tried Baclofen? I've been having visible muscle spasms in my original site of CRPS II since the day it all began (like you upon waking on the recovery room table) and then over the past few months they became more progressive in other parts of my body (diaphragm, opposite thigh, shoulders & arms) after ruling out medications as the cause (some meds do cause spasms/tremors) we realized it was in fact the CRPS spreading/progressing and so I started taking Baclofen 1-2 10mg tablets 3 times per day. That has really helped even though they haven't completely disappeared they aren't as jerky now. The first real bad one happened while I was driving and literally scared the freakn' daylights out of me because it literally pulled my foot of the peddle and the pain was so intense I wasn't even paying attention to my driving for a few seconds.. not good. Thankfully with the Baclofen I haven't had another jerking episode like that, so I can still drive short distances.. until that no longer works

The epsom salt soaks help also and if you can massage in the areas where touch sensitivity is tolerable. Lactic acid builds up in our muscles when we stop using them which causes pain to increase so anything you can do to help rid (like with Vitamin C & regular movement as hard as that is) your muscles of this should help lessen the pain some anyhow. Wish there was more.. I so do!

Keep posting you are crackn' me up with all your gif's

TESSA!! There you are! So great to hear from you!!

Oh yeah, I did try Baclofen and it was a terrible experience for me and I couldn’t wait for it to be out of my system. And I am the one who ask to try it. It was my idea with the doc, and I so regretted it. I will try to explain what it felt like. So I take gabapentin (which I will be talking to the doc in jan about changing) which helps or makes life worth waking up for by helping to control the electric shock and tremors.

My tremors, much like the shocks were, without this drug, VERY severe. The tremors would also turn into full on violent jerks. My tremors often give off warning feelings before they become visible. I can feel a vibration of sorts, or tremble inside and without some treatment it will escalate from there. I can also have what feels like restless leg.

Anyway, so when I took baclofen I felt the vibrations, trembling and SEVERE restless leg (but all over my body) feeling. It was maddening and I couldn’t wait for it to be over. I’m so dumb that I tried it again, thinking well what if it was just a bad night. NO! it was indeed the drug. That sucks because I had heard so many that felt like it really helped them and I was hoping it would help me too.

Soaks/Massage: yep, I do both.. often. My daughter is in massage therapy school. She’s trying to learn how to fix me, bless her heart. She’s only done one real, full body massage on me. She’s concerned to touch me until she has all the knowledge. She doesn’t want to hurt me. I tell her, heck, you’re not gonna hurt me, you would massage lightly on me before you were in school. I respect her and I am waiting. I think around May-ish I will be a regular client lol. Until then, yes I rub the areas that I can reach. I worked hard for the first few years of CRPS and continue to try and desensitize my foot/toes as much as possible. This usually happens in a bath. Funny how the more stressed out my leg/foot, the more sensitive my toes will be. They can regress quickly and then dissipate if I quit doing whatever is aggravating them, like walking too much, etc.

And another quick note on massage. I’ve paid for such bliss and have had great experiences with it. I have also had terrible therapists, who like some doctors, just didn’t listen to me before or during a treatment. I will always tell them; don’t lightly touch my foot, ESPECIALLY my toes on my right limb. As relaxation is what I’m after, not pain, and that would send me through the roof. If you do touch that area, be profound, definite in your touch. Most will just avoid it. Cool that.

I do move and get around more often and more vigorously than I probably should. I am the queen of over doing it. Then I pay the toll for a day, two or three… Balance… I must find balance in my life with this stuff.

So great to hear from you! Sorry to just be rambling on and on. Hope you’re having a good day! And HAPPY NEW YEAR!

[Vrae]

Originally Posted by AZ-Di

Vrae,
Sorry about the new "gig.
I have only had those spasms in my left foot (we think it's spreading there).
I stretch my foot & it cramps and my toes "stick" some curled, some straight and pulled at weird angles. The cramp gradually lets up and sometimes I can very painfully walk it off.
My hand (original site) has stayed contracted since surgery. Now, a year later and too many proceedures & P.T.'s to count I have partial movement. But what little grip I have I get mini spasms where I drop things or go to pick something up and reflex "drop it like it's hot". That's w/o pain so I'm not sure what that even is.
I have Baclofen, but I haven't been taking it lately. I will again if spasms get chronic.

AZ-Di, me too… wasn’t the gig I was hoping for. “I stretch my foot & it cramps and my toes "stick" some curled, some straight and pulled at weird angles. The cramp gradually lets up and sometimes I can very painfully walk it off”. THAT’s it exactly!

I am so sorry that your hand contracted and you’ve had to work so hard to regain some function. I drop things ALL T-H-E T-I-M-E!! That is frustrating as all hell! Now, if my feet were my hands, it would be worse, but since this crap has moved all over, my hands are definitely a problem now and this dropping things, I mean like… I dropped “it”, then I immediately dropped “it” again, and sometimes even one more time for good measure. I yi yi!