New diagnosis of CRPS (RSD)
 

So after 2 surgeries, and lots of pain, I a referral from my podiatrist got me to pain management doc. He says I have CRPS RSD or whatever it's called.

I understand from looking around it must be in early stages still, I don't have some of the more extreme swollen foot leg issues etc. But as the day goes by I have horrid pain swelling etc in my foot. Hard to take off shoes, socks, hurts to lay foot on bed certain ways, sheets blanket or dogs rub in it hurt.

He has scheduled me for a sympathetic lumbar nerve block to see if it helps, as I understand to see which type it is.

So any help with any information would be very helpful!

Also is it normal for it to not always hurt? Mine seems to be not as bad I'd I just don't walk... Lol yeah that's helpful for weight loss too!

Hello Brandon,

Sorry for what you are going through. It is no fun needing to be here but welcome nonetheless. I too am a CRPS after foot/ankle surgeries kinda gal. I would very much like to give you a properly welcoming post with my usual tips on where to go for info and my schpiel about making sure it's not nerve entrapment. That said it is late and I am a tired pup so I am going post the link to my favorite info video tomorrow.

For the meantime, know that 80% of people get better over time. Not everyone has all the symptoms and symptoms change. Take at look at the Budapest criteria for CRPS if you question your diagnosis. I never had crazy swelling myself. It IS normal to have swelling after foot surgeries, sometimes for months and that is uncomfortable for anyone CRPS or not. Epsom salt soaks are good for feet and light compression can help after foot surgery if you can tolerate it.

Know that you are not alone in this, there is good support here. Can you give a little more info on your procedures? when, what , hardware, etc?

Hang in there. Things DO get better.
Sending Healing Love,
Littlepaw :hug:

Sorry for the reason, but welcome to the group. I am newly diagnosed as well and these folks can give you some awsome links to check out.
My RSD doesn't hurt constantly every day, but the more I'm up and moving the more I swell and the more I hurt. I have my sympathetic nerve block on the 17th of next month to see how bad mine is and if it will offer me any relief. I already take anti-inflammatories and am being switched from norco to ms-contin for pain control.
Again welcome this is a great bunch of folks here and are always willing to lend an ear. :hugs:

It absolutely makes sense that it feels best when you're resting it, BUT that is a short term strategy. The less you use it, the more atrophy you'll experience, and the worse your symptoms will become. The trick is to find the balance of using it without over doing it, and to build up as much endurance as possible. One of the "easiest" ways to rehab will be in a warm pool.

Blocks can be used for diagnostic purposes, but they can also help decrease pain for days or weeks at a time, so that you to rehab. There are other options as well, but they are not a bad way to start, IMO.

Initially podiatrist found a huge cyst in my cuboid bone and lots of arthritis, tries a tarsometatarsal joint fusion, after a year and a half of pain after that surgery another podiatrist went in and did revision and removed hardware thinking I was having a reaction to the hardware, along with I had broken 2 of the three titanium plates...

After this second surgery in December the pain was just amplified and is worse than it was.

But yes the pain just gets worse the more I walk... Drive etc... By end of day just Aghhhhh...

Is that enough background? I can go into more detail if I need... Lol

Second surgery they put in a Pyrosphere... The last ortho I talked to wants to take it out.... Another surgery... Or not...

Hi again Brandon,

Geez. Poor foot. It has been through a lot.

I am always concerned post procedure about the possibility of nerve injury, especially with hardware in and out. I am skewed by personal experience in which a minor ortho procedure injured my calcaneal branch. My foot felt like it was made of broken glass and was worse after surgery than before. Many months later I finally saw a plastic surgeon who specialized in peripheral nerve repair. He suspected a neuroma and was right. I had a positive "scratch collapse" test as well as 40% reduction of signal on a nerve conduction study. We decided to go in - I ended up with a 3.5 hour nerve repair and neurolysis and major releif. My CRPS came after a later, different procedure. I ALWAYS believe it worth checking for nerve injury after surgeries. Sometimes they can do something about it.

On general info I like Dr. Pradeep Chopra' video "CRPS Diagnosis and Management". He is highly regarded, gives lots of info on treatment, therapies, etc. It's 2 hours long so just take it in chunks. http://youtu.be/s3LKhOZ8mAM

Also a thought for new diagnoses when the case is not super florid is the following article. "Peripheral Nerve Blocks Relieve Symptoms Mimicking CRPS"
http://www.pain.pitt.edu/paincontent/news/PMNews.pdf

This may or may not apply to you but I am for anything that potentially gets someone out of this mess. I myself have had quite a bit of relief with local steroid shots specifically aimed at reducing my scar tissue.

On sympathetic blocks, first I have not had one personally but I am not sure how it would tell you what kind of CRPS you have. Did the doc mean figuring out 1 or 2? I don't see how it could show peripheral nerve injury but maybe that's not what he meant. BTW, a "positive" response in limb warming does NOT necessarily diagnose CRPS. Anyone's limb warms with a sympathetic block. The important thing is if it brings pain relief. If it does and allows you to start rehab then great!

I am with Lit Love on the pool. I spent many months walking in the pool after my procedures and credit the water for a lot of my recovery. Non-painful weightbearing is important. I also spent time on an exercise bike and on an elliptical since that doesn't stress the heel to toe motion but does allow weightbearing. It is okay if your recovery is slow and starts out low-end. The important thing is gentle gradual increase. A lot of us get over-aggro about getting better and that can just make things worse with CRPS.

I too would have no pain if I would just sit on the couch all day and not use my foot. Like that's gonna happen. Do as much as you can but minimize flare. Go for a bike ride instead of taking a walk if that keeps you active. Maintain muscle strength in alternative ways. Remember that the foot is exceptionally complicated. You have had major mechanical changes and those take a long time to adjust to. I don't know if orthotics might be helpful for you. If some of your pain is scar related on the socks, sheets etc. discomfort you might try a topical.

I hope some of this helps. Come see us and let us know how you are doing. I hope you find relief soon.
Sending Healing Love,
Littlepaw :hug:

Welcome Brandon...

Had my sympathetic nerve block done this am. I can say the pain hasn't gotten any better today if anything my foot hurts worse, and I am having strange spasms and pain in the outaide of my upper thigh.
Anyone else? Any ideas, will it be better tomorrow... At this point not sure if I should have had it..

Sorry, but if you haven't experienced pain relief yet, I've never had it increase later.

You might consider scheduling a massage asap, especially if you feel you might be in worse shape than before.

http://www.rsdrx.com/massage_therapy.htm (Not everyone is a fan of Hooshmand and some of his info is definitely outdated, but in my experience massage is beneficial after blocks.)

Taking a long soak in a warm bath with Epsom Salts might help.

So sorry to hear you are feeling worse instead of better. :( I recommend calling your doctor's office tomorrow. At least talk to the assistant or nursing and ask about your reaction. The sympathetic nerve ganglion are right on top of the motor/sensory nerve they feed into. On the spasms and pain my guess would be the area either got "buzzed" so to speak by the injection or there is some swelling in there in reaction to the injection or possibly because of displacement from the injection depending on how much volume was used.

If you end up with no relief it seems fair to ask if the doc thinks this means you don't have sympathetic pain or did they not quite hit the spot? Did your limb warm? That might give a clue if placement was good....

Hope you feel better soon,
Littlepaw

On a side note my left knee has severe arthritis, having an mri for it Thursday. On the off chance they want to do a TKR what are the chances of it being affected by the crps?
My knee is close to giving out so probably don't have a choice.. Just wondering. Apparently my knee is about 20 years older than I am...

Hi Brandon,

Feeling any better?
On surgery, Put it off as long as you can and get your current CRPS symptoms and foot issues more under control. Don't want to throw your nervous system totally over the edge. That said there are things that you can do to minimize risk of spread, Vit C 500mg daily, ketamine during anesthesia, a regional or epidural block, and 900 mg neurontin pre-op has just come out as a new recommendation to reduce the incidence of chronic pain after surgery. And this one is really important, a surgeon who is willing to take a little extra time watching out for major nerves and to make a point of protecting small cutaneous nerves during your procedure. They can work around the small ones and mark them sometimes so they don't forget they are there, cutting through those is a bad idea. When the time comes, post again or check old posts, there was one just recently.

Littlepaw

CRPS/RSD

I'm new to the group hoping to connect with others who live with CRPS/RSD.

I broke both ankles 5 years ago. The left was severely damaged but fortunately my right has healed nicely. After 5 surgeries, hardware removal, total ankle replacement,subtalar fusion and 2 screws due to reoccurring hairline fractures I developed RSD/CRPS. I take Oxycodon for the pain. I'm concerned about the impact of long use of narcotics. I get regular massages to deal with scar tissues. I also use a hot tub, and try to stay active although at times walking is painful. I also use a cane but not regularly... I've had a hard time accepting I need it.
Lately I'm having trouble focusing. Does anyone else have eye problems related to the RSD? If so any ideas. I'm considering seeing an ophthalmologist.
At times I feel hopeless and helpless but keep looking for ways to live with this. My doctor suggested instead of using fight I use acceptance when I express how I describe I my search for treatments to ease my symptoms. All if this is difficult physically and psychologically!
Thank you for "listening".


Sent from my iPhone using Tapatalk

Welcome VW,

Sorry for your reason for joining but you will find plenty of understanding here. Living with CRPS is a fine balance of fight AND acceptance. On the one hand is keeping up activity, strength, movement, and the never ending search for what things make life better and on the other is accepting our limitations so that we don't overtax our injuries and nervous systems. I push as much as I can while minimizing flare. I also try to take a long view of things. If using devices sometimes for mobility or curtailing/altering activity makes you better in the long term then that's what you do. Sometimes you have to judge this day by day and let go of preconceived notions about what you "should" be able to do at any given time. Sometimes it's just not up to us.

Forgive yourself for being the way you are, forgive others who may have inadvertently hurt you and come here when you need to vent. We all understand loss, anger and sadness. If it gets really difficult moving on consider a therapist who works with chronic pain and illness. That has been a big help for quite a few of us.

Maybe start a new thread to say hi and ask about the eye thing. You can search for this too. Seems like someone else was asking about that recently...

Sending Healing Love,
Littlepaw :hug:

I am also new to the forum and newly diagnosed with CRPS following a broken foot last summer. I am scheduled for my first nerve block this Thu. I cancelled 2 appts in Feb because the idea of it freaked me out. I take Gabapentin 100mg twice daily and 600mg at bedtime - any more and I can't function.
Might the nerve block also decrease the cold sensation or just the pain?

Welcome Jules,

Sorry you had to come find us but there is a great group for support here. I have not personally had a block so take that into account. However a sympathetic block by nature warms the limb in anybody. So it should theoretically, if they hit it right, warm things for the duration of the block. One PM told me he had one patient whose limb was primarily cold and after the second block that issue resolved. Obviously results will vary. I chose not to get one because I was progressing on my own and overproduce scar tissue pretty much everywhere for any reason.

good luck, I hope you find relief soon.
Sending Healing Love,
Littlepaw :hug:

So it's been a week tomorrow, not sure if I'm too far progressed or not, but the shot really only helped with the sensitivity everything else is the same. Swelling, pain, alternating from cold to warm foot, and the sweating from my foot.

So not sure what I gained from it. Another question can crps/RSD affect your breathing? Just had an onset a few minutes ago where it seemed hard to breath....ugh I'm falling apart

Just in case you haven't ran across it yet....don't ice it.

Of course after surgeries, icing it is always recommended. BUT DON"T DO IT. From what I've read, it can make things much worse with CRPS. After my son's surgery, they kept telling him to ice it when he couldn't get the pain under control (this was before diagnosis). He wouldn't do it for three months b/c he couldn't tolerate the cold or the weight of the ice pack. Finally, three months post surgery, he started icing it - and it felt better temporarily - but his pain overall became so much worse.

I kind of feel that way when I put my pain patch on it... Cold and hurts for a few minutes but then feels better... Only way to help keep sensitivity down.. But i haven't tried ice ever.

Ever since the block, I have had a
Burning pain appear on the back of my thigh right above the bend of my knee sort of on the inside... Is that a nerve area that is affected try by this?

hi Brandon,

I think pretty much anything is possible with nerves. There are some cutaneous nerves coming off the femoral that supply that area. I guess whether your pain is deep or superficial might tell you something as far as where to look. There are good diagrams online of cutaneous and deeper nerves for the posterior thigh. Maybe some lidocaine cream to the area to calm it down? Did your other pains after the nerve block get any better?

Littlepaw :hug:

Welcome Brandon,
Don't get too excited yet. I have had my leg swell up from steroids before and just because it felt like it, lol. Muscle spasms are typical for me too after procedures. Just give it a couple weeks and don't use ice, use a refrigerator pack and only cool it if you have swelling and elevate. Use a support sock if you can stand it, that also helps swelling.

little paw,
what is nerve entrapment?

Nerve entrapment is a compressive neuropathy cause by constriction, scar tissue, or mechanical cause. It can even be vascular in nature. When nerves don't have adequate room they don't function properly with the result being pain, numbness, tingling and sometimes temp and color change in the limb. Nerve Entrapment and also injury is an imitator of CRPS. Injuries to nerves are not unusual during surgical procedures, hardware can cause problems too. Somtimes the damage/compression can be helped by injections to reduce scar tissue or surgery to make a repair or remove a painful neuroma. I posted links to resources under NErve Injury Resources just a couple days down in the threads. PM&R doctors with the right training can sometimes find a problem with a nerve on ultrasound by looking for swelling or scar tissue on it. A doctor who does hydrodissections will have the skills to look for this kind of problem. Might be worth a try....

i do have an internal brace in my ankle now, it is not metal though. but i had an X-ray after to make sure it was placed correctly. but i assume that would not show the nerves?

Placed "correctly" can impinge a nerve and it will never show on imaging. I had a neuroma that didn't even show on MRI. Took plastic surgery peripheral nerve specialist to find it with Scratch Collapse Test. I got the sucker taken out. I still have pain there, some of the damage couldn't be repaired optimally but it is MUCH better than it was. I can tolerate sheets now and it doesn't wake me up at night. Socks are still a struggle but they put direct pressure where the neuroma was. But since I live in Austin we only wear socks two months a year anyways. :D

agh couldn't even imagine if all this could be fixed by removing the thing that was put in to help my ankle. the problem is they say i am in too much pain to even have surgery. and i have brought it up before and they say its not likely and just asked to get another X-ray

Doctors have a hard time accepting complications. My original ortho kept insisting my first procedure was a "success". Problem can be hardware or can also be scar tissue tethering a nerve somewhere or a scar neuroma. I sent you a PM. Cleveland Clinic has just the people to check this thing out in their Peripheral Nerve Program. Never hurts to ask....

check out the article at the bottom of my nerve injury post. Really interesting case. I think we owe it to ourselves to explore all possibilities. Then if there really is nothing left you can move forward with accepting that.
:hug:

I experienced pain in my upper thigh, hip area after all of my sympathetic nerve blocks for my ankle, i am guessing it is normal?

Went to pain doc Friday. Since the shot did not work we are going to go full bore on meds... Percocet for when things get to painful, and trying celebrex and lyrica to control the arthritis and nerves. He said between the arthritis pain and the crps he isnt sure what is casing most of the pain.and it has spread I to my ane as well.

Also since the shot did not work he said it is not rsd but crps..ia he correct in saying that? Or could the shot just not have worked?

Brandon,

I've not encountered a difference in those terms in any literature I have looked at. CRPS has superseded RSD as the "nome du jour". He must just mean that it is not sympathetically mediated pain if the shot didn't touch it or work beyond the hours of the analgesic they used. But you CAN have CRPS without sympathetically mediated pain from everything I have read. Which is kind of a ridiculous number of academic articles at this point :rolleyes:

That said, for sure treat your bone issues! Any underlying pain contributor could be amplifying the whole picture or even have a role in causation.

Good luck on the new meds :hug:

Hello Brandon
Ive had for a few years and yes its gonna hurt sme days less than other days of course but it will remain..as times goes on you will understand your body's response to CRSD..my first nerve block lasted about a week-so i had second and only lasted 2/3 days so my doctor said my risk was to high for only 2/3days so we stopped-so i hope you have a better success than me-so good luck

Hey Brandon, welcome, hope you doing better, and the meds are working, how is lyrica? It is kicking my butt, just started it myself, and I am a complete zombie...
:hug:

Nerve Injury/Nerve Compression - Little Paw
 

Little Paw
Where will find the forum or responses on Nerve Injury and Nerve Compression. My latest doctor is leaning toward this as a diagnosis rather than CRPS based on my symptoms. I will be going for EMG later this month but was looking for more resources.

Hi Blue,

Just scroll down the threads, right now it's 3 pages in. Last entry 4/23 by Enna. title is Nerve Injury Resources. That website for Washinton University has a link for doctors to technical info and surgical training.

Good luck! Littlepaw :hug: