Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

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Old 09-19-2014, 05:49 PM #1
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Hello HarryDresden,

Honestly, like I had mentioned in another thread and feel even stronger about this after reading your story (thank you for sharing) that this does not sound like CRPS at all. It is unusual for pain to be relieved with elevation as CRPS pain is not generally relieved by anything and it causes pain even being still. Many describe it (including myself) as 'relentless' and not relieved by position, immobilization etc., It is also unusual for the pain to get better over time and to stay at such low levels.

It does sound more like either swelling or the break itself caused a nerve to have pressure - causing that 'tingling' sensation. At least for me (and we are all different so this may not be the case for everyone) the nerve pain I get is like severe electrical shocks, lightning bolt jabs and a freezing burn that is insane most of the time. The color and temperature difference alone could easily be a result of the inflammatory process of healing and not caused by RSD or CRPS. If it is CRPS then the worst thing you can do is to immobilize it or stop using it (as long as the break is considered 'stable').

I'm also surprised that a doctor would suggest so many nerve injections for such a low level of pain when bone fractures do take even up to 2 years to fully recover. And in your case not having even half of the symptoms of CRPS or a clear nerve injury this could actually harm you even more. I'm not trying to sound like your pain isn't real or anything like that.. it's just that sometimes doing to much especially when the picture isn't clear or could easily be explained by the fracture alone could not only cause you great anxiety but can cause harm.

If you can.. put the CRPS on the back burner and allow time for the fracture and its affects on the soft tissue to heal. If things change for the worse then you know what to look for. Don't worry so much about not treating it because if you don't immobilize it, don't use ice, get your mind off the pain, and work on ROM daily then that is the best treatment you can be doing even above any medical intervention.

Wishing you a speedy recovery,
Tessa
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Old 09-19-2014, 06:22 PM #2
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Thanks Zookester,

I replayed to neurochic with an outline of my symptoms prior to the nerve block. Though, it might be worth noting that those symptoms were gradually getting better on their own as well. I think my report might not having included them. Currently all I have is stiffness in the toes and a tingle now and then.

I can't thank you enough for caring, I know its much worse for others.

Honestly, I want nothing more then this to turn out to be something else. Then hopefully I'll have more energy to see what I can do to help others.
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Old 09-19-2014, 09:24 PM #3
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Hello again HarryDresden,

Okay so here are a couple of thoughts and again please don't take this the wrong way we are all just trying to help. I've had many broken bones and even recently a fractured ankle and CRPS type II so my comments come from personal experience.

My first thought regarding symptoms:

* prolonged pain - this is really isn't really 'prolonged' since your fracture is only 3 months old and well within the time considered normal for bone healing, especially in the foot where we are all very sensitive to pain due to the increased nerve endings in this area.
* my toes being swollen - swelling at this stage of healing is very common with a fracture.
* osteoporosis in the toes - it is unlikely that this is from CRPS at this time since this more often will occur later even in acute/severe forms of CRPS and also since you have it in more than one toe where CRPS is clearly not yet spread.
* my toes being uncomfortable hot. - this is common with the inflammatory process and also with swelling. Very painful burning pain is a halmark of CRPS
* blenching (redness) - not sure what 'blenching' is so I won't comment on this.
* loss of ROM in toes - this is extremely common with fractures at this stage especially after disuse or immobilization and is often caused by swelling and the healing process.. very, very common with fractures of any kind.
* muscle weakness - muscle weakness would also be common with immobilization and disuse after a break and not so common in the very early stages of CRPS unless severe or acute CRPS (which by your pain description isn't the case for you)
* tingling in the toe - tingling when coupled with your other symptoms would most likely be caused by nerve compression from swelling or the fracture itself.

After a fracture or even a sprain it isn't uncommon to have pain with walking/movement of the affected limb and then for it to get better with rest or elevation - with CRPS this is the opposite as it isn't usually relieved by rest.

Decreasing pain this early on means it is healing - if is less likely to be CRPS if you are getting better.

You mentioned that your worst pain was at a 4/10 from wearing shoes - that is very reasonable considering you had a fractured toe - wouldn't you agree?
It isn't about how high the pain rating is but all of the symptoms combined that would indicate CRPS and at least to me it really doesn't fit the picture. Sounds like you had a bad fracture and it is healing.. perhaps a little slow but not necessarily.

Yes, CRPS is a frickn' nightmare something I wish I had never heard of and I hope for your sake you don't have it.
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Old 09-20-2014, 03:53 PM #4
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In spite of the other things you have described, you still just don't fit the diagnostic criteria for CRPS. You are describing normal post fracture and immobilisation symptoms. Osteoporosis has particular, unusual patterns when it is caused by CRPS rather than being present for any other reasons. It's entirely possible you had this in your toe before the fracture, indeed it may have caused or contributed to your fracture. It may also be the cause of the slower and more difficult healing process you think you are having (compared to other bones you have broken). Don't forget also that unlike other bones, toes have your full body weight through them, they are at the most peripheral part of your body and therefore they can take more time to fully heal and settle.

I really don't think you are helping yourself fixating on CRPS. You have none of the signs and symptoms so if I were you I would simply forget it, get on with your rehab and get on with the rest of your life. If you had it, you'd seriously know about it.
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Old 09-21-2014, 08:08 AM #5
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Sounds to me to be more of a circulation problem than CRPS. Take note that this must be confirmed by a doctor which I'm not. We're just trying to spitball some help your way.
Consider yourself fortunate if turns out not to be CPRS because as everybody here can testify to how much this monster makes everyday life suck in so many ways.
Be well and I hope you find relief...
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Old 09-22-2014, 11:24 AM #6
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Thanks Russell Neurochic and zooester,

@Russell, any idea's how I could figure out if it was circulatory? Something I could ask my doctor when I see him?

I wanted to update this thread with the last couple days. I hope i'm not coming off as selfish, talking about these things goes a long way to calming my nerves.

9/17/2014 ~ I did some light (for me) weight lifting of 125 pounds. I also went on several long walks. No pain or swelling.

9/18/2014 - 9/23/2014 ~ I have trouble sleeping. I seem to stay asleep for like 2-3 hours then wake up and get back to sleep after about an hour or two. I walk up slightly groggy. It's possible i dose in and out in some of that time. This might be due to stress, but I feel like I was more stressed last week and slept better. I have been using Lidocaine patches at night... maybe they are causing the trouble?

I also have an increase in muscle twitches in the foot. I get about 2 a day. Their not painful, their sort of like what a muscle does after a hard work out.... maybe that's all it is. Sometimes I get them at night. I got one odd episode yesterday after stretching my toes for a good 10-15 minutes.

Tingling sensation on and off. Tingling seems to happen mainly when I elevate my leg.

Dog stepped on my foot caused it to flare up (redness, pain 1/10) for about 15 minutes.

Again, writing this out and hearing peoples thoughts helps. Also my doggy helps!

Last edited by HarryDresden; 09-22-2014 at 03:36 PM.
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Old 09-22-2014, 12:50 PM #7
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HD I think everyone that's posted on your behalf is right. It's good that you wrote out your thoughts and experiences in such detail - that in and of itself tends to be very therapeutic for any condition. But it really doesn't sound like CRPS based on your description. We ain't doctors but we know CRPS/RSD better than they do in a lot of ways -- particularly in that they aren't experiencing it on a personal level. If you had it, you'd know it more definitively.

Pretty impressive lineup of thoughtful answers. This place is amazing.
Live your life HD but don't forget us. It will make it sweeter, I promise.
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