CRPS in only half my big toe!
 

First post here. What a great resource! I have spent hours reading many of your stories. What an unusual, misunderstood, misdiagnosed and devastating disorder this is.

My situation is not as difficult as most of yours, but it has become a "lifechanger" for me, none the less.

I had two surgeries on my big toe. Healing nicely, then on September 11, 2008 I bumped that surgically repaired toe into a piece of furniture which started the process. Very light bump and to be honest, I didn't think much of it.....at first, until symptoms increased.

Podiatrist put me in a camwalker, which made things worse. One of those prior surgeries was a fusion of the front toe joint and there was still a screw in there, so he thought aggravation from the screw was a possible cause, so removed the screw but no change. X-rays and CT scan negative. Podiatrist eventually suspected CRPS as there wasn't much left it could be (diagnosis of exclusion). Met with a pain management doctor who specializes in RSD. He performed a sympathetic lumbar block. Had a successful block (warming of leg) but got no relief from it; it actually aggravated the condition for a day, then went back to baseline.

If anyone would have told me that a sore toe would create this much pain and angst, I wouldn't have believed them (until now)! A month of physical therapy got me ambulatory again. Another month of work on my own and I got much of the foot swelling down, range of motion back, and pain reduced.

Inflammation, shiny red skin, burning pain remain (had stabbing/hot cold, but that has since since gone away) Oddly, I have NO hypersensitivity! That is the one symptom that I've never seen. I believe that lack of hypersensitivity may have hindered a quicker diagnosis.

Am taking neurontin 300mg 3X a day which definitely helps, OTC naproxen sodium, warm baths, massage, foot and toe exercises, stationary biking and short walks to keep things loose, blood moving, and keep my sanity. These things are ALL helping. I can't spend much time on my feet though or I pay for it later in the day. "Use but not overuse" is my mantra. I think I learned that here!:winky:

I'm also nursing a bad knee (other leg) and will eventually need a knee replacement. Had surgery scheduled just before this all started but put a hold on it at this time because of the toe CRPS. And between the toe and the knee, that prevents me from working as a Technician. Money running out.....yikes!

A couple of the things I've been pondering which I'll toss out for comments...

1. Anybody ever heard of having CRPS in only part of a toe? And NOT having the hypersensitivity?

2. Risks of taking Neurontin (gabapentin) long term? I'm tolerating well so far

3. Risks of having this spread to the knee if/when I have it replaced?

4. Any risks involved with major dental procedures. I was told that cleanings would be okay, but we did not discuss extractions, root canals, etc. Podiatrist did say that risk of spreading from procedures is primarily when cutting of muscle, nerve, or bone....not tissue.

Thank you so much in advance for any comments!

Hi welcome and I am sorry about your dx. Like you before I was dx I was put in an airboot which made the condition worse. I also had a nerve block that increased my pain. I am also on neurontin and other meds. You are still at a low dose as sometimes 3200 or more is needed. I think overall this drug is ok and long term does not show any issues for most. My doc is very cautious about addiction and creating other problems since rsd is chronic. As for spreading some people do and some don't so try to stay in the day though this is very hard I know. We are all really different in terms of what happens and helps. I am glad your pain doc has knowledge of rsd. On terms of surgery that is a concern about your knee though that does not have rsd I would still consult your pain doc and make sure if you have to do it that your surgery doc is aware you have rsd.

Thanks for your reply Daniella. Am learning a lot about this condition here.

Just had another appt. yesterday My CRPS "team" consists of a podiatrist and 2 pain management doctors very familiar with CRPS. Physical Therapist on board too, but he trained me well and I can keep the affected area moving pretty well on my own, at least for now anyways.

Another review between all and there is no disagreement between the three doctors about the diagnosis, although it is not a "typical" presentation. From what I can see, typical doesn't mean a whole lot with this disorder!!

They bumped my neurontin up from 900 to 1500 mg. per day. A little fuzzy right now and a dry mouth, but not too bad.

Trying to get enough relief where I can spend more time on my feet and see if I can go back to work. Maybe????????? I'll be in big trouble if that doesn't happen. Lots to think about; some anxiety which is affecting my stomach and my sleep.

Stay the course I guess.......

Hi Birchlake, Welcome to NT, although I'm very sorry for the reason of you being here. You will find much comfort and support. I didn't have sensitivity like most people. I'm into this 15 years full body or generalized. Mine came right after a breast biopsy-swollen arm and frozen shoulder. Although I wasn't diagnosed for 4 years,, I had lots of p t treatment and massage therapy. I did the massage therapy out of pocket and probably helped deffuse the sensitivity.

1. I had very little sensitivity. Some can't even stand the wind blowing on them. Yes, you can have RSD on part of a limb or member. RSD is likely to spread.

2. I was on 3200 mg of Neurotin. It causes weight gain. I don't know about any other side effects. It completely stopped my electric shocks, jolts,jerks spasms. But after 6-7 years, I went off gradually under my Drs. care and for the most part, they stayed away.

3. Risk is extremely high for spread. Go to rsd.rx and then go to puzzles, which are questions 146 questions from rsd patients and Dr. Hooshmands answers. It covers surgery after rsd and dental issues.

4.My dentist gives me antibiocs the day of even a cleaning. I use the laughing gas mask. I had a root canal by another Dr. and had a reaction to ephenephren. It felt like a heart attack. Dr. had to stop procedure and counter the reaction.

Another website for good info is RSDSA the national organization for RSD.

Also rsdhope.org is excellent as well as mayoclinic.com under R for conditions and diseases.

Hope this helps, one of your new friends, loretta with big soft hugs:grouphug::grouphug:

Hi when I first was dx with rsd it was a hard dx because I did not have the typical of how it happened and all the symptoms. You don't have to have all the symptoms to have rsd. The doctors are learning this more and more everyday. Through the 3 years I have had my condition my symptoms have changed too. Anyhow on the anxiety front I have this badly but it was worse and got to an out of control point. When I was dx I should of went to a psych asap but my thought was if I could get fixed my anxiety would be less. Well the fix did not happen since this is a managed condition and I finally did go to a psych. I still have anxiety and of course the pain is still there but I deal with it in a better fashion. I really encourage you to go and anyone else. My pain doc said something that really helped me with this he said one does not live in pain for this amount of time and it not impact you mentally. I liked this approach because it was not like saying the pain is in my mind or I can mentally make it go away. He was saying that you need support to deal with the physical pain. Feel better

Daniella and Loretta, thanks much for the replies. :)

I'm finding out a lot about this disorder. Sometimes I spend so much time researching and reading about it on the internet that I have to walk away. Paralysis by analysis I guess. I'm hitting it with all cylinders and trying to keep a good attitude. Some days are better than others though; you guys certainly know the drill there. Quite a journey.

But as the old saying goes...

"Life is what happens when you're busy making other plans!"

I have a pretty decent management routine, doctors that I trust, a friend who is a psychologist who is keeping track of my mental health, so I know I'm doing a lot of things right. Am looking forward to spring as winter in Minnesota is getting pretty long right about now and the warm weather makes me feel so much better.

I see quite a bit on the internet about Dr. Hooshmand (now retired) who has published quite a bit about RSD/CRPS. I found his "puzzles" article has been especially informative.

I see that he has a published book. I checked Amazon**** and it's available but wow...$107 used to $191 new. Spendy.

Money is awfully tight as I'm not working right now. Have any of you read this book and can you make any recommendations on it? Even with funds being tight, I'd find a way to buy a copy if people feel it is a valuable resource. Knowledge is power right?

Thanks much!

Dear Birchlake:

Have you checked your local libraries for Hooshmand's book?

So sorry about your job - I had to take a sick leave also, but I am worker's comp so they are paying me for now (at a reduced rate, of course - but it's something). I am hoping and praying right now that ketamine treatments this March or April will provide me with enough remission from my RSD that I will able to return to work this spring.

The RSDSA.org website has an awesome database of current research articles regarding treatments and medications. I highly recommend it. (Hooshmand is great, but dated).

The best of luck to you, Sandy

Half of my big toe
 

Hi Birchlake,

I Nearly fell of the chair when i read your story, you could almost say i wrote it.
Back in 2009 i had a winograd procedure on my left toe to stop ingrowing toenail growing deep inside the nail boarder.

6 weeks later returned to work everything was fine until 2 weeks into december 2010, when i came out of the office walking towards carpark when i ended up on my back side slipped on ice, thought nothing more of it until a week later my calf muscle starting twitching like it did before Having winograd procedure, then my left leg kept feeling cold, things got worst toe feeling cold then hot followed by a sharp burning pain all down the right hand side of nail boarder which would happen later on in the day, went to see consultant who told me my Ip joint had all but gone not that botherd me in 12 months and that's where all the pain was coming from, he said he would fuse the joint with a screw, that was in april 2011, now three months down the line still having the same pain i knew within 10mins after operation it had failed.

Pain managment doctor tell's me i don't have crps

but reading your blogg i still wonder as my anke and foot are lightly swallon. plus my leg and foot feels wet.

my consultant tells me things will settle down.:confused:

Taking pregabalin and Tramadol which doing nothing for me.

Diagnosis of CRPS can be very tricky. This is a condition that can be both overdiagnosed and underdiagnosed! Always best to get multiple opinions, which I would highly recommend if you haven't already done so. It is not responsible for us to try to help you diagnose on this forum; gotta jump through the hoops and see the doctors. I have had examinations now with 6 doctors. You would be looking for a "consensus" / agreement of diagnosis between them.

And be sure those opinions come from doctors that are FAMILIAR WITH CRPS. Many are not. I found one doctor that had seen 2 cases in 26 years, so I kept looking! Most pain mgmt. doctors though are familiar with it. You will usually have a better chance with specialists, and maybe a visit with a neurologist might be a good idea for you. You really need to have a lot of looks at your condition and the sooner the better!!

Are you getting physical therapy for your foot and ankle? For me, that was a very important part of getting things to "settle" down, if you will. Before I stopped seeing my physical therapist, he spent quite a bit of time training me so that I could perform my own therapy. There is a tremendous difference in physical therapists. Again, you need one that has had experience with this disorder, as too aggressive of therapy can set you back. You need to start very slow and easy with the therapy process. Some respond quickly, some respond very slowly, but most all will benefit in my opinion, but you must have the right therapist!!

My CRPS is alive and well mind you, but all of the steps that I take (Physical therapy, chiropractic, massage, neurontin and naproxen, etc) help to keep it somewhat manageable, at least for now. I was on percocet for the worst period with this disorder, but eventually was able to wean myself off of it. You want to try to manage without narcotics if possible. I take tramadol infrequently now; that is about as strong as I need for now anyways.

Every single case of CRPS though is unique. And it is hard to treat something that you don't have a solid diagnosis of. So keep seeing docs until you and they are comfortable with the diagnosis of what you have. IF you do get a solid diagnosis of RX, it is important that you develop a management plan unique to your situation that gives you relief, keeps you mobile, allows you a reasonable night sleep (VERY important) and addresses your mental health (don't forget about that part). Plenty of experimenting is necessary to find things that work for you. This journey is not a straight line.

Lots of good resources here and a good place to vent if you are having a bad day! Many compassionate folks here.

Good luck, keep plugging away on that diagnosis and keep in touch..............

Hey welcome to the boards. You may want to start your own post or even on the intro board. That way you will get more feedback. Does your pain doctor deal with RSD a lot?Have you tried any other meds? I agree that if you have not seen a neurologist you should cause it is important to rule out other conditions. Hope you get answers and relief

you were right
 

Hi Birchlake, By the way you were right.

Wasn't happy with my pain managment doctor, So today 06/07/2011 went to see a podiatric Surgeon who knew all about RSD/ CRPS, i don't Have stage 1 and the swelling in my Ankle might be as good as it get's, he told be on the safe side go back to your GP and get him to pass you onto a Pain managment doctor who deals with CPRS. I was in two mind do i have CRPS or not, glad i read your blogg. So there's two of us with toe problem , what type of Physiotherapy do you carry out?, i might as well start early.

It was a good idea that you kept seeking opinions. This much I know: This disorder is widely misunderstood, even by many professionals

The therapy I had was not so much directly on the toe, but on the entire foot and ankle. It was performed by the physical therapist. After a couple of months of that, the foot and ankle settled down considerably, but not the darn toe. It looks like Rudolph the reindeer's nose! He trained me for specific toe exercises that are mainly "range of motion" exercises. With the fusion, of course the range of motion is limited, but I always need to keep working against the CRPS as the toe wants to tighten up.

Just as in doctors, it is very possible that you might need to try a couple of therapists in order to find the one that is right for you. Not sure how your health care system works with trying different professionals. I had sessions with 2 therapists that were not so great. Third time was a charm. I found one that had a very good understanding of CRPS, was an excellent therapist, and was compassionate (necessary ingredient with this crazy thing). Therapy is a very fine line with CRPS. It is critical to keep things moving as best you can, but too aggressive of a therapy can be very painful and can also set you back. Slow and steady is the course of action; you may not see quick results. But it is very important in my opinion; the sooner you start, the better the end result will be.

Good luck!

I too have a nice purple toe (we could be twins) looking back i did wonder why my shoe was tight last year, where do you have the pain? mine is in the nail boarder if i rest the pain goes until i start walking then i get a sharp pain, i really need to get back to work on full pay for 6months but i need to get back to normal.

First sign of crps
 

[Hi Birchlake,

Hope you don't mind me asking?, what were the very first symptoms/signs of your crps before it got worst,
I Have slight swelling in the left ankle the feeling of running water down my leg and twiching calf muscle.
Now the right leg ankle has swelling. very worrying
doing plenty of walking keeping things moving.

Every person seems to have their own unique symptoms and progression.
Mine included burning pain, hot and cold changes, and severe inflammation. Curiously, (and thankfully) I never have had the "hypersensitivity" that many suffer with.

Remember that you do not have to have ALL of the classic symptoms of CRPS to have CRPS.

Walking is probably one of the most important things for me. It seems a bit counter-intuitive, but you MUST keep moving!!

My mantra is "use, but not over-use". That means that you have to find the threshold of how long of a walk or how much time on your feet you can handle before it's time to sit down. This will not get better overnight, but it CAN get better. It CAN be managed (for some, not all).

Good luck and stay on it. You must develop a daily management plan. Be reasonable and don't be afraid to challenge yourself in small steps!

Hi Birchlake, How are things with you? are you getting around any better, thought i would update, well its gone to my other foot now 2 swallon feet pain is still the same was having a warm feeling in my butt (thats where i fell),
gone back to work some days are better than others getting a good night sleep is a bit hit and miss, no fun when you live on your own most of the time. trying to look on the bright side hope your are. i suppose like others if only i hadn't of slipped on the ice.
keep in touch when you have rsd you need all the friends you can get.

Nigel
Birmingham uk

CRPS in toes after nail surgery
 

Hi all. My first post here. I had nail surgery in both my big toes (removing both sides of both nails), got an infection in both, then once that all got sorted I found that both toes were flaring up hot, red swollen and painful after 15 mins of walking. I went to see an orthopeadic surgeon and he diagnosed CRPS type II in both toes. So I'm on 25mg Amitryptylene (anti-depressant nerve numbing drug) that has slighlty reduced the time it takes for CRPS to trigger and flare up. I'm seeing a pain specialist this week, but feel that I should be treating the cause, not the effect. Has anyone else looked at nerve removal surgery? 1 surgery already caused this CPRS, so I'm loathed to have another and make it worse.

Any thoughts/input much appreciated. :)

mnp2011, welcome to the forum. You and I and nige1960 have it in the toes, which is a bit unique. Amitriptyline is not an uncommon drug to try. My mainstay drug is gabapentin, the generic for neurontin. I also take 440 mg of naproxen sodium twice daily (Aleve), which helps with general pain and inflammation. The first year, it was percocet, which worked, but left me dependent so I weaned myself off of it (boy, was THAT fun!). I would be in big trouble without the gabapentin (yup, I've tried!!). I also take lots of therapies, including physical and chiropractic.

It will be interesting to see what the pain mgmt. doctor recommends for you. Know this: This condition is widely misunderstood, even by professionals. Remember that you are not obligated to try the meds/approach that any doctor or therapist may recommend. If you see 5 doctors, you may get 5 different opinions and recommendations. You are going to have to be your own best advocate, and you must take control of your own destiny. Do not let this condition define you! You should do lots of research from reputable CRPS links, and get multiple professional opinions. Knowledge is power as far as CRPS goes. Most definitely.

http://www.rsdfoundation.org/index.html

http://www.rsds.org/index2.html

http://rsdrx.com/

Treating the cause may sound like the best approach, but from what I've seen, unfortunately is not effective for most cases, UNLESS it is caught early enough. How far into this process are you; both from the start of the symptoms and the diagnosis?

Hi birchlake (& nige1960). Thanks very much for the reply, good to get some feedback from someone else with the same condition. Seems like you've spent quite some time to find the right medication for you.

Thats very good advice from you about the doc's. I've done some research and it affects 20 people per 1,000,000 so there is relatively little knowledge on it. All the doctors I've seen so far have said I probably know more about it than them, which is not encouraging. I'm in the UK and have found a couple of specialists in CRPS that I am arranging to see.

The condition has been there for 5-6months now and I've been treating with Amitriptylene since around month 4-5. I've been keeping photo records of it all since day one that has helped when seeing Dr's.

Just today I tried tourniquet'ing my toes with rubber bands to constrict blood flow slightly and that seemed to localise the redness/swelling just to the toes, but not sure the consequences of this approach! It stopped it spreading up to the top of my foot to the ankles at least.

Have you tried: TENS machine (electronic pads that stimulate nerves)? Or Acupuncture?

I aim to see several specialists and as you say make my own mind up and take control of it myself.

I'm also thinking of setting up a dedicated 'CRPS in toes' blog to try and aggregate vital information that others have found with regard to it specifically in toes and treatments etc. If you'd like to take part let me know as knowledge is very much lacking as you say on this.

I'm very stubborn and determined and am not going to be beaten by this!

Best wishes

ADDITION TO ABOVE: My toes are also not hypersensitive to touch (thankfully). My CRPS reaction happens after 10-15mins of walking then, 1. heat, 2. redness, 3. swelling, 4. pain. Then I put my feet up by lying down, and it all calms down again. Pain, redness, heat, swelling all dies down and stops.

The Amitriptylene extends the period before triggering the reaction, and the redness and swelling doesn't go up so far, but still as bad in the actual toes.

I have now got two appointments booked for this coming week with CRPS specialists and I'll report back with what they say and suggest.

Wow.......your symptoms are very similar to mine. It isn't terrible when sedentary, but after about 15 minutes up and around...maybe 20, it gets very aggravated and I also get the heat, red color, swelling and pain.

Too weird! We have to stay in touch here and support each other. I'd love to be part of your blog.

Yea seems very similar! I'm just putting together all my research and case notes & photos etc for these appointments.

Once I've been to see them I'll start getting a blog together specifically for CRPS in the toes, with links, articles, photo's and more detail of my case. I'll try and set it up with several accounts so you can just add what you like as and when. Then that will hopefully get some more feedback from others and their experiences/treatments specifically with this type/area of CRPS. Well that's the idea anyway! Any other suggestions are very welcome :)

My RSD started in my left hand/wrist but spread to my left foot and toes. Does that count? (lol)

I think that counts! **

In that case I'll chime in on your blog... :Writting:

Jimbo, you're in! I really like the blog idea. We can all benefit from sharing information, symptoms, meds, therapies, etc!!

Anytime you want me to babble on let me know...:Music 2:

Hey Jimbo, isn't "babbling" a kind of therapy? I think it should be in that category. I am convinced that there is absolute value here!

I'm excited (and so are my toes) to find others with at least similar symptoms, affected area, etc.

That is the BEAUTY of this forum. :D:D

My wife tells me if I didn't have my sense of humor I wouldn't have any sense at all...:Wave-Hello:

Keeping a sense of humour is really important and I have to admit I've been struggling with that. I really kind of sunk in these past days how long-term this CRPS can be. I guess before I thought it would be something that would be easily fixed like a sprained ankle or something.

Still, got a few specialists to see so hopefully they'll come up with some bright ideas to sort it out a bit more.

Off for a (short) run this morning to record how quickly the toes flare up. I've been recording regularly various exercises (cycling, cross-trainer, walking etc) to see if the drugs are prolonging flare up times. I seem to be getting about 10 mins extra on this Amitriptylene 25mg.

Running is pretty much the same as cross-training ~15-20 mins before flare up.

When I was prescribed this Amitriptylene I as told to increase activity. I'm not sure if this was so that activity would 'reset' the sympathetic nervous system response; so that when I stop taking it, the nerves will have remembered the correct function?

What were your experiences like with this drug? I am very interested to hear as I will stop taking it this week.

**

I never actually took amitriptyline, so can't help you there.....maybe others will chime in.

Regardless of what we take, it is important to "keep moving" as best you can. Inactivity is the worst thing for CRPS. My mantra is "use but don't overuse".

Thanks for that. I've been pretty active so hopefully that has helped out. I usually know when to stop, when most of my feet have swollen up. Will be interesting to see what these two specialists come up with. I'll of course report back with what they suggest.

I'm not sure if we can post video clips within posts here, but I'll try and post a short clip of my toes during in a flare-up. Would be good to get your thoughts and comparisons with your own toes, if that doesn't sound too gruesome!

** This blog I'm setting up can be found here: http://crps-in-toes.blogspot.com

If anyone would like an account setting up to add your story and anything else you want to add, change, edit etc. Just private message me your email address and I'll set up an account for you.

Looks like I can't post youtube clips in the forum, but here's a link to a short video of my toes during a CRPS flare-up.

http://www.youtube.com/watch?v=aHy7aHOMQpQ

I think you should look into erythromelalgia ... similar appearance on the skin, and the burning.

Taking adequate magnesium containing foods or supplements often stop these temporary reddening episodes.

http://en.wikipedia.org/wiki/Erythromelalgia

Dr. Jay Cohen MD had this and fixed his own with magnesium.

http://medicationsense.com/erythromelalgia.html

Also I wonder what antibiotics you used when you had your infections in the toes? Ciprofloxacin or Levofloxacin? These drugs can cause nerve damage. Flagyl (metronidazole) and Zyvox also cause nerve damage.

Hi there thanks very much for your input. I will definitely look into Erythromelalgia - not something that's been suggested yet.

The antibiotics I had were Flucloxacillin, taken for two weeks. I had them years ago for another problem and had a surgery after taking them on my lower back and that didn't cause any problems.

I was thinking it may have been the anaesthetic injections I had prior to the nail surgery. I had three in each toe, but not sure if that may have also caused nerve damage.

Just having a quick look through various sites and Erythromelalgia does seem to very accurately describe what I'm feeling and the triggers are the same. Thank you so much for getting in touch about it. I will suggest it to the two specialists I'm seeing this week and next week.