[HarryDresden]

Below is a history of events to the best of my memory. If anyone cares to read it and share any suggestions on my situation that would be great. I know my current condition is something to be really happy about compared to nearly everyone else. My hope is to stay in as little pain as possible and i'm not sure how to proceed with my next steps. I know the earlier you seek certain treatments the better.


5/25/2014 - Predicted injury date. When i dropped weight on right foot. 2nd digit toe clearly broken.

5/25/2014 - 6/24/2014 - regularly walking about to and from house and to and from job. At both places I was able to elevate my foot. On occasion had to walk further but not regularly. Wore sandals and stepped only heal. Buddy tapped toe. The pain at this point was probable around a 2-3 if I stepped poorly. Otherwise, if elevated it was hardly present (0.5). I don’t recall it ever being warm. Toe was swollen. I believe the area was always balanced. Not sure if my toes were stiff. Somewhere in here the worse pain was around a 4-5 when i wore shoes and couldn’t elevate my feet.

6/24/2014 ~ saw dr. K. He diagnosed that the toe was broken. Recommended a shoe (not sure of the technical name) to minimize movement. I don’t end up getting the boot tell aug 8th... because I wasn’t sure why it would help. In retrospect this was a terrible idea.

8/1/2014 ~ internship in ----- ended From this point forward I had little to no walking or driving or anything on the toe.

8/1/2014 - 9/3/2014 - between these dates I did very little walking. Maybe 10-15 minutes a day with maybe 2 hours of driving a week. Pain was around a 2. Walking would result in throbbing. Elevation eliminated pain and left just my toe with a tingling sensation. This is when i noticed that things seem to get worse late in the day.

8/7/2014 (ish) ~ got boot that dr. K recommended

9/3/2014 ~ second visit to dr K ~ he suggested it might be rsd/nerve damage/etc... he ordered a bone scan at hospital


9/10/2014 ~ bone scan done. results were as follows: Compression None. A triple phase bone scan was performed following intravenous administration of 26.9 mCI of technetium 99m MDP. Spot imaging of the bilateral ankles and feet. Imaging during the angiographic phase demonstrated no abnormal activity. The blood pool phase demonstrates normal distribution. Delayed imaging demonstrates mild asymmetric uptake, right greater than left. However, there is no focal abnormality identified. There is symmetric excretion by kidneys. Impressions: 1. no evidence to suggest rsd. 2. findings in the fight foot may be artifactual due to positioning. Please correlate with plain films. Further investigation with MRI to be determined clinically.

Dr. K referred me to Dr. E at ------

9/3/2014 - 9/13/2014 - Toe seems to tingle a bit less everyday. Not much walking so hard to judge that aspect. Anxiety levels are very high due to CRPS being not well understood and the possible outcomes. Pain levels fairly low, foot felt too warm. No trouble sleeping. Toes slightly red and swollen.

9/13/2014 ~ dr. E at ---- diagnosed with CRPS and I have a nerve block done in right foot. I believe 3 shots of in the postival nerve of steroid kenalog - 10. hcl 1 percent. Before nerve block i feel only a level 1 pain, no pain from any part of the foot being touched. It should be noted that this was in the morning and the mornings are generally a little bit better then at night and this was done in the morning.

9/17/2014 ~ See dr. A at ___ Dr. A (anesthesiology, CRPS specialist) remarks that “i don’t have all the symptoms of CRPS, but he isn’t sure what else it could be”. He suggests two weeks of a lidocaine 5 percent patches to be worn for 12 hours to reduce pain. He also remarked that the right foot was colder, which was interesting because it has always felt warmer to me. Though i didn’t test it at the same time. I have tested the foot daily and i don’t feel a difference. Since the nerve block the foot has had less warmth and swelling.

9/13/2014 (post-nerve) ~ today toe no longer tingles. There have been occasions (1-2) of light shooting pain in (2/10) leg. But not in the last couple days 16th -17th). The toes are stiff and have limited range. The toes will bleach red if I walk on them. The foot will also feel “warm” if i walk on it. For example 30 minutes of walking will result in my foot feeling “warm”. Warm both to my touch and feel warm. It takes about 10 minutes of inactivity (typically I have elevated it) for it to not feel warm or be red.At night the pain discomfort (1/10) might be worse (2/10) or it might simple be that I have nothing else to concentrate on. Toe tingling is rare but happens if i elevate for more than 30 minutes.

9/14/2014 ~ saw another anesthesiologist and CRPS specialists. Dr C diagnosed wtih CRPS type 1. Recommended Lumbar nerve block and Gabapentin.

9/19/2014 ~ No pain, blenching (redness), throbbing, warmth/burning, sweating, sensitivity. I walked for 40 minutes. Squatted light weight. Toes are still stiff but seem to respond well to exercise and are becoming more flexible. Toes have a slight tingle to them. Used a lidocane patch last night and i'm not sure it helped (as i had no pain then as well).

[Neurochic]

To be honest, you don't have any of the signs or symptoms of CRPS, particularly the basic criterion of persisting pain pain that is out of all proportion to the injury. There are strict diagnostic guidelines which set out the circumstances in which a diagnosis can be reached and it can only be done after every other possible diagnosis has been ruled out. The doctor who you say "suggested" it might be nerve damage or RSD at the point he did has no basis to reach that opinion unless you have lots of other clinical signs and symptoms that you left out of your summary. Unfortunately it seems that CRPS is increasingly being used as a dumping ground diagnosis when people have pain but their doctors have no idea what is wrong with them. The clinical diagnostic criteria are pretty detailed and what you have described doesn't fit them at all.

From what you have described, it sounds nothing like CRPS. To be honest, it sounds like the normal healing process for a broken toe which has had a delayed or less than ideal healing protocol applied. With broken bones, even toes, the normal recovery and post recovery pain can be quite significant and can persist for quite a long time afterwards especially if you have had delayed or inappropriate treatment - such as not immobilising or keeping walking on it. It's entirely normal to have stiffness after a broken bone, especially after a period of immobilisation. The initial impact could also have caused soft tissue damage which is notoriously painful and slow to heal but also often missed. Even something clinically insignificant like bruising the end of a bone can cause 6-9 months of pain - it just takes a long time to fully heal.

Like many others have advised, I think you should stop worrying about CRPS and just crack on with your normal life. Anxiety and worrying about a condition that its really unlikely you have, isn't going to do anything to help you - it will become more of a problem than your toe.

[zookester]

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

[HarryDresden]

Thanks Neurochic,

I'm also hoping this turns out to be something else, I re-read my write up and wanted to clarify my symptoms.

The worst my pain got was around a 4/10, early on (1 month in), it was enough so i couldn't concentrate on my work and was a result of wearing shoes.
Other then that I experienced about a 2-3 if i walked on it for several blocks.

From what I can tell, the symptoms that match CRPS have been

* prolonged pain
* my toes being swollen
* osteoporosis in the toes
* my toes being uncomfortable hot.
* blenching (redness)
* loss of ROM in toes
* muscle weakness
* tingling in the toe

All of this was made worse by walking or standing and better by elevation.

my toes getting uncomfortable warm and redness ( I wont call it burning) seemed to come around the second for third month... but I can't recall for sure.

When i saw the orthopedic doctor the second time the x-ray showed by bone was healed but had osteoporosis. At that point I had all they symptoms above but they were still gradually improving day by day.

After the nerve block, i noticed my toes were very stiff and i was lacking ROM. I very well might have had this before but simply hadn't tried to move them.

As far as symptoms lacking

* my pain has been getting better
* sensitivity to touch.


I can't thank you enough for your interest, I know so many others have it much much worse. This this is a ****ing nightmare.

[HarryDresden]

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.

[zookester]

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.

[Neurochic]

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.

[Russell]

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...

[HarryDresden]

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!

[visioniosiv]

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.