Does Anyone Ever Notice..
 

does anyone ever notice, or experience, in whatever body part is primarly the source of pain or injury (ie, for my the original injured happened to my right shoulder and has sperad since), any almost "uncontrolled muscle movements?" I am not talking about tics or anything of that nature, but, I sometimes feel, or notice, that, when attempting even simple everyday activities, when it comes to my right arm, that it doesn't, perhaps get the correct signals/commands from my brain (if that makes sense). I seem to be more uncoordinated I guess would be the best word......is this normal with RSD? Does anyone else out there experience this? If so, why does it happen? Is it something to genuinely be concerned about?

Hi there,
Yes I do notice uncontrolable muscle movements. My toes spasm and my leg shoots out in front of me whenever I am walking. It is horrible and really embarrassing. The muscle up from my big toe cramps all the time too.

I don't think the spasms are anything to be really concerned about I think it is just another side effect of the RSD. I would speak to your PM doctor about what you are experiencing though. I was and still am really concerned about my balance problem, my PM doctor says that he's never seen it before with RSD.
Hope this helps and if you need anything else just ask
Thanks

I get spasms...
 

and I have had seizures in my legs so bad that I had to go to the ER twice by ambulance...I think the Topamax really controls this now...

I haven't noticed it as much now since I am considered stage III (late stage CRPS)...

But, I would imagine since the disease is neurological and the disease has motor function problems...that your case would not be unheard of.

Love,
Heather

Yes i have them too... No pain ever... I know what you are talking about i have had seziuers that spread.. It started in my right arm and then down in my leg where there is no RSD... Very scary and hard to deal with... I posted a while ago about having mixed signals when i try and attemped something or even when thinking about something... Sometimes i will just be thinking about a typing or scratching my arm or any normal thought and my hand will start making the motion needless to say my PM thought i was crazy ... he asked me to start seeing a psychologist... I was like maybe i am carzy lol

Love J

Lol...
 

I hate when they tell us that we are crazy...

It sucks cause all of us will hear it at least once, right?!

How long have you had RSD? and how did you get it?

:hug:
Heather

Muscle spasms and uncontrollable jerking of the limb(s), weakness and a slow response time are all a part of RSD. Pretty much everyone with RSD has an issue with this and takes a muscle relaxer to help stop the spasms and jerking. Of course, as with everything else to do with RSD, we all experience it to a different degree.

I take baclofen and it has stopped the jerking of my arms and legs and I may get some annoying muscle spasms once or twice a month. I consider it my miracle drug and glad I don't have to end up hurting more cause of things jerking so long and so hard.

Hugs,

Karen

Myoclonus and tremor
 

I have myoclonus(muscle jerks) and tremor, and sometomes my limbs has no link to my brain? feels like it:confused:

I take Rivotril for the myoclonus this helps, all this is a part of CRPS
Tiril

thank you to you all
 

thank you to all you of you who were willing to share their experiences on this issue. To me, this is one of the most "embarassing signs" that comes along with RSD. It seems silly to use the word embarassing I know, as it is not my fault, nor something I ask for, but, I try my best to maintain certain levels of independence and normalcy, and, it sometimes feel like a slap in the face and a strike against that when I am moving, say, a plate, from, one place to another, and drop the plate, when it then smashes into I dont know how many pieces, for no apparent reason. I guess I am still adjusting to certain areas of my life (as RSD is a part of all areas of our life), and struggling, as i get used to the loss of independence in some regards. It's hard, and I have a tendancy to be too hard on myself.

weakness
 

I don't seem to get muscle jerks as much as tremors and weakness because of muscle loss.

But I have some really odd symptoms as well. Like I don't get the sensitivity to touch as much as constant burning like flames burning my flesh and most times a severe sunburn in different spots of my body. (This is always flutuating as well, most consistantly my neck, for the last few weeks my fingers when they are cold which is always! My knee's, shoulders, lips, teeth...all feel tingling, burning sometimes at different times sometimes at the same time. (That's my flare) Also, I have constant swelling in my left arm since May of 2007, left leg and fingers sponaniously swell.

Maybe I have different things going on because it was caused by venipunture? Does anyone else experience these symptoms?

Greyhound
 

What is venipuncture? Whatever it is, it sounds painful.

I am slowly learning, through reading others sharing their symptoms, and how they manifest, how, truly, it is different for every single person. Do you often feel sick to your stomach, due to pain, when you are having a "flare" or you notice an increase of pain and your symotoms acting up? Or, anyone else reading this for that matter.

Example: woke up this morning, with back cramps/spasms, and tightness in my lower back (original injury in right shoulder). I took my 900mg morning dose of Neurontin and 1/2 hyrdrocodone. About and hour later, to my surprise, my pain level was about a 4 (it has been months and months since my pain has been that low). So, of course, I wanted to get out of the house and go do something; anything. As, normally, within this last week and a half, I have only been able to leave this house once due to pain. Anyway, so, I felt good, at a 4, and my gf and I went shopping. If there is any pattern with RSD and its sometimes spontaneous onset of symptoms, I know that one trigger is shopping unfortunately (due to have to pull and push, if even just slightly) at the clothing on the racks. So, within about 45 minutes of being there, my pain shot up to a 7-7.5. Once I got home, while the pain maintained that level of intensity, my shoulder burning, bicep area burning, shoulder blade area burning, and numbness/tingling running to my elbow and down to my palm and fingers, I noticed too, another pattern, it being difficult to eat because the pain makes me nausted. Does this aspect, the being sick to your stomach, directly related to the pain, common for people to experience? And, again, and I am NEW to UNDERSTANDING RSD, the way that i just detailed the progression of my symptoms and pain, sound "normal"? These may seem like dumb questions, but, the more I learn, the more I realize how much i need to learn.

So, not such a great day at this point...pain is making it so hard to eat..I'm currently "taking a break"..stepping away from my plate to write this, hoping, it will subside...

Hi Jcrewrockstar,
I hope this link helps you http://www.nlm.nih.gov/medlineplus/e...cle/003423.htm it is all about venipuncture.
I am so sorry about the pain you are experiencing. Sometimes I feel really sick that I wont eat anything or do anything.
You seem to have a very loving gf
Take care

Sick
 

Sometimes I feel that I don't want to eat...I'm not sure if it's the pain or the medication or maybe a combination of the two.

I'm also on Adderall (I thought it was Concerta, I was wrong) which does decrease my appetite quite a bit. Also Neurontin 1200/day

When I'm not feeding myself appropriately I do notice, at times, I feel ill and my pain levels seem to increase. Maybe it's because my body is under stress...not sure. I'm still learning though...like every day and trying new things thanx to Sandra (Sandel) and Allison! :heartthrob:

When I get a flare and the pain levels are alot higher than usual I have tried eaten something, taken a hot shower or bath which takes the edge off. I really have to force myself to eat though.

Hopefully that makes some sense to you?

greyhound
 

It makes perfect sense, as that is exactly what it is like for me. I have actually told my gf, "I have to force myself to eat."

Interesting, though, as you take Adderall, as I do I (I take a relatively high dose of Adderall Xr 30 twice a day). Yours, as you said helps with concentration and stimulates your appetite. I have taken Adderall, at that dosage for 4 years prior to the Neurontin, which actually decreases my appetite, and, I feel like, in knowing my body chemistry quite well, that the Neurontin has actually interfered with or decreased the Adderall's ability to "do its job." Hmmm, I guess everyone's body works different. And, as you say, and, as I practice, you have to keep toying around with combinations that work the best for you as an individual.

heather/pardon me
 

I stand corrected, i see where you wrote it does DECREASE your appetite. Sorry about that.

Venipuncture
 

Venipuncture is an insertion by a needle for Blood Draw or an IV...I started getting symptoms after I had attempted to donate blood at a Blood Drive at work!

CRAZY!

But I would never try to stop anyone from donating blood, it's so important. I however, probably will not as I feel I have "paid my dues". However, I do instruct people who are bothered by the concept of donating blood after hearing about my ordeal that it's important the Phlebotomist is not rushed and has some experience. That's all I really would tell others...please donate but with caution.

;)

I'm up to 25mg 2x a day. That's been increased since I started with the Nuerontin though...so I think the Nuerontin took some of the effects of the Adderall away as well.

Strange, huh?

Greyhound
 

well, the way my therapist, who prescribes my Adderall (and, I take a low dose of Diazapam as well, dating 4 years ago, and well before my injury as well) is this...

If RSD is, as the theory goes, the our "lymbic system" is going "haywire" and overracting, those two very same medications, Adderall, and Diazapam, are processed by and necessary, even in someone without RSD taking them for certain conditions, to maintain a sort of chemical equilibrium. Because I have ADD, I take the Adderall. So, it works with the frontal lobe of my brain and my lymbic system to produce enough norephinepherine (sp) and serotin, to make up for the deficits, to maintain focus, and concentration, and Adderall actually works to stabilize mood as well (again, ALL processed by the lymbic system where memory and concentration aspects of the brain's duties reside). And, the same holds true for the Diazapem. It, too, works almost strictly with the lymbic system, to calm my already-overactive anxiety thanks to the flight vs. fight messages being relayed over and over to my different parts of my brain and body (causing panic, fear, anxiety). Again, prior to RSD, the Adderall and the lose dose of Diazapam worked brilliantly in maintaining a chemical balance that made up for inherited deficiencies, and added, tremendously, to the quality of my life.

Since RSD, and Neurontin (which, ironically, my therapist out me on back in October thinking what I was going through was a chronic nerve condition, though I just got the tenative diagnosis of RSD last week), things have changed chemically. Having taken Adderall and Diazapam for the better part of 4 years prior to RSD and the introduction of Neurontin, I know how I usually feel mentally, with my moods, thoughts, concentration, anxiety, etc.
Now, sure, I still, occasionally, usually when the Adderall was wearing off, I would forget where I put something, but, other than that, no real signs of forgetfulness t/o the day. Actually, I am so organized around the house it makes people laugh (all my clothes are color coordinated in my closet, so what!). And, prior to Neurontin and RSD as well, I too, wasn't completely spared from anxiety, as there is no magic curing pill. But, I can tell you this, prior to RSD and Neurontin, my anxiety, when it surfaced, was ALWAYS in relation to a person, place, or thing that would cause any normal human being anxiety (ie. job interview, doctor's visit, doctor on the other end of phone with results of this test or that test). Point being, prior to, there was always a reasonable trigger or cause to the anxiety.

When I last saw my therapist, who is a very smart man (ie putting me on the Neurontin back in October verses any doctors or specialists suggesting that I do so along the way), I discussed that my Adderall seemed "not right" during the day...how scattered I was, how frustrating it was that I seemed to be forgetting more and more. I also told him that not only had my level of overall anxiety increased, but that it was more "neurotic anxiety".....the type of anxiety not related to any event, any known trigger, any reason at all..but, a noticeable increase in anxiety. And, I questioned if the Neurontin and RSD, all relating back to the CNS and the lymbic system were somehow impacting one or more of those things I mentioned. We discussed several options for treatment. He told me that raising my Adderall dose any higher would make the RSD symptoms worse (not sure why, as we didn't get into this), but, he doubled my anxiety medication (which he said was already at a low dose), and, agreed with me, that based on my observations, and these being changes only since RSD has been a member of my family, that it was likely due to the lymbic system going haywire and disassembling the normal chemical balance achieved through my typical doses of medication. That was when, he too, said, in order to achieve the most pain relief, it wasn't the hydrocodone or opiates that would do the trick (he doesn';t believe, and I dunno if it's common theory or not, that opiates help much in treating chronic pain), but, rather, increasing the dosage of Neurontin instead. That's when I went from 900mg of Neurontin a day, to 1800 mg a day. It's too soon to say whether or not the Neurontin, and raising the dose, will be the most beneficial. Interesting it is, indeed, how the lymbic system control so much...."who'd have thunk it"? :)

I know...right?
 

Well, I read on the Adderall a few months ago...it does affect your nervous system....so I tried going off it for a few weeks and that's during the time I had a major flare for 4 days.

Strange, huh?

But at the same time, I slid on the ice and bumped my swollen arm (elbow).
A few days later or maybe even a day is when I started getting worse then the flare of the entire body happened.

I should point out...
 

I started getting really strange symptoms last winter...even Tonsillitis! (Never had that before)

Last winter I had cold hands, but they didn't burn...I would actually sleep with a heating pad in my pillow to warm up my fingers. In addition to those two things, I had also began to see a Psychiatrist because I was having difficultly thinking...following through with things (staying on task), sever Insomnia...etc. Pretty much the same as this winter (without the Tonsillitis)!

These reasons are why I am now on Adderall and why I was also instructed to take the Trazadone! I am also on a higher dose, 25mg 2x a day!

Sometimes Adderall makes me feel anxious, like a full on panic and I have to rush to get everything done. Sometims it puts me in a trance and I can't break away from the computer or something else that doesnt NEED to get done, but for some reason I focus (like cleaning out my purse at work instead of working)

Anyways, I can't fight the Trazadone anymore tonight. Thanx again for sharing this!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

:hug:

When I am having more pain I get very cold and shiver. I can't get my body temp equaled out. I go to bed and pull up covers..making a tent over my leg or taking and doing the one wrap and try not to move to avoid pain with the touch. To get moving in the morning, I take a hot shower and I don't dry off. I go straight for the blankets and put a towel over my head. I lay down again for about 10 minutes and it gives me like moist heat. It works pretty well.

Today i had to come home at lunch from work to take a shower to help in moving and pain. This is the first it is really effecting me at work since the original accident.

Hello Vanityfaire: I found a great blanket cradle that keeps the covers off my feet as sheets are too painful to the touch. It is 30" wide by 20" high by 17" deep. It costs $31.95, plus $10.00 extra freight, plus shipping. It sounds expensive but well worth the price. I ordered it online at Colonial Medical. The stock number is #80304. You may be able to find the same item elsewhere online or at a medical supply store. Regards, Lil

Moist Heat
 

I hope the Moist Heat was able to help you today Vanity. I know what you mean, it's a full time job getting comfortable for me sometimes! It is so difficult to warm my body though...I spend hours upon hours in the bath some nights refilling my tub with fresh hot water.

Sorry you're going through this as well...:(