Anybody out there dealing with CRPS that rides?
If you're unfamiliar, the short version is its nerve pain that causes pain (obviously), swelling, discoloration, etc. and there's not really a cure or any way to tell how long it will last. Short term, long term, permanent etc I basically have to retrain my nerves to get them to know whats normal and not normal and what is supposed to and not supposed to hurt.
I broke my foot in july and developed it sometime after surgery 3-4 weeks later. Started noticing my foot swelling up bad after it finally started going down. And crazy burning pains etc. I'm on meds now that take the edge off, but I've kind of hit the point where I'm not getting much better and thinking this is just now what I have to live with for a while or ever.
I definitely can't run or ride a pedal bike, but I feel like I could probably ride moto, just not sure if it's a good idea yet or not. I know when I get on the bike I'll forget about the pain. I'm more worried what the next day will be like. I got on an elliptical a few times and the next day was pretty regretful both times.
Just wondering if anyone else out there has experienced it and what it was like for you..time wise, healing process, etc. I'm going to start doing the mirror therapy. I'm sure there's some more tricks out there. Please share if you've got any knowledge!
I broke my foot last may, simple Jones fratucre,no surgery, took 12 weeks to fully heal and no pain at the break but sometimes the biottom of my foot feels sore and bruised and the top feels like it has a really bad sunburn, not senstive to touch, just feels like a bad sunburn. Not real painfu orl debilitating but super annoying. Dr.said not normal but not uncommon. Will pass with time.
Obviously not at the level your experiencing, So real isight for you. Hope it gets better quickliy
Thanks, same to you!
If your foot burns you may have trauma induced Gout. That’s what happened to my foot. I broke a bone bottom of my big toe couple of years back getting ready for deer season. Dropped a tripod stand on my foot. Went to the doctor and he said you have gout and wrote me a prescription for gout meds. He also said something else is wrong with your foot, need to X-ray it. I chose to go to a foot Dr. Sure enough I had broke bone. He looked at my blood work and said my Uric acid level looked to be to low for me to have gout caused by high Uric acid levels which is the main cause for gout. He said there is such a thing as trauma related gout which you may have.
Me being the good patient I am re-broke before it completely healed. Gout came back and I fought Gout of and on for a year. Took forever for my foot to heal but once it did Gout went away.
So there is no more swelling? Only the pain remains?
Is the pain constant or do certain actions trigger it?
I had something simular butt was caused by nerves in my s2 spinal area.
Was on major pain killers for about 6 weeks until a new doctor figured it out.
2 rounds of steroids got rid of 98% of symptons.
If I touch a certain spot on the side of my calf, a much less painfull sensation can still be triggered.
I also have some perphial neuropathy in both hands. This is caused by stenosis in my neck. The back side of both thumbs burn and sting but only if something brushes against them lightly. But if I am using my hands I do not notice.
What kind of surgery? Tiny bone chips left behind have been known to cause pain and are hard to pick up on x-rays. I would ask for an extensive mri on the foot.
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Suspect you will see improvement gradually over 6mo to a year. Had this after a major radial bone/wrist surgery, plates, etc., nerve pain felt like burning from a 1000 suns. Worst ongoing pain imaginable, Pulp Fiction pain I called it, so I get what you’re dealing with.
Advice would be to not go hard core on rehab, if it’s swollen, red, you’re doing to much. You shouldn’t need pain meds other than Motrin this far out from surgery. Keep up with ice. Just walking around is therapy. Something I did was bury my arm in wet sand at the beach, get the nerves desensitized which helped. I believe over time the pain might be there to a degree but you won’t focus on it.
My understanding is that gout is sharp pain, not burning. The uric acid crystalizes and stabs you in your joints.
It can be caused by many things, including beer.
Although usually in your toes, it can happen in your fingers, which is mostly where it happened to me (also a bit in one of my toes).
It wasn't immediate relief, but after about 3 weeks of taking a concentrated tart cherry supplement, the symptoms all went away.
This is product I take when needed: https://www.vitacost.com/natural-factors-cherryrich-cherry-fruit-extract.
There's not much swelling but at times a little bit. My docs all agree I'd benfit from steriods for sure but unfortunately I'm a type 1 diabetic as well, and steriods will throw my blood sugar through the roof, uncontrollably for like 24 hours. So unfortunately I've had be very careful with any treatments to make sure all steriods are avoided.
I didn't injur anything else when I broke the foot (didnt even go down, just caught it in a corner). And I had none of these issues before. So I'm not concerned about another underlying injury playing part of it.
small Bone chips could be a small possibility but it was pretty clean and clear what was broken and where, and the area of pain isn't even near that area (crazy how your nerves work).. so I don't think so. Plus all of my symtoms match the diagnosis for CRPS exactly unfortunately.
I'm at about 5 months so hoping this start to turn for the best again. Sounds like you understand what I've felt. That crazy burning has mostly went away, thank god. It was so bad I couldn't sleep with a blanket on my foot, much less put a sock or shoe on it.Seriously if the wind blew on my foot I would almost be in tears, so sensitive to the lightest amount of touch.
Yeah the desensitation therapy is really what's best right now I think. They had me trying to rub my foot on different textures of carpet, blankets, etc. anything to give it different feelings. Hot/Cold, etc Im going to start doing the mirror stuff to see if that helps too..read a lot of goood feedback on that.
I'm on gabapentin for the nerve pain, 3 times a day. When I'm getting close to needing another dose, I can feel it. But I'm starting to be able to stretch those times out further if I wanted to which is a good sign.
I was also on 2 other meds for it (actually antidepressants, used to treat this type of pain) they just pulled me off 1 of them and toward the end of the month will likely pull me off the other and just leave me on the gabapentin which is like the #1 most common thing for treating nerve pain. The other 2 meds have some not great side effects in the bedroom lol... way to kick a man when hes already down!!!!
When I read your title I was a bit curious what I was going to get reading the replies as it can be a bit varied asking for medical advice on a moto forum. From what I've read from your replies though, keep doing what you are doing. The medications you are on will help and the exposure therapy is the best thing. Treatment from a Rheumatologist and a Physical Therapist who has been trained in CRPS is the go to. I've seen a few patients with CRPS and mainly refer them out but help more on the re-activation to normal activity. Most cases are 6-12 months with some more severe cases being 2-3 years.
Biggest piece of advice, focus on your treatment and if/when possible, worry about bikes after. Also since you are T1 Diabetic, pay close attention to your numbers and don't let them get out of range as that will effect nerve signal transmission as well.
Best of luck!
Thanks!
Yeah, medical advice anywhere on the internet is questionable, lol. More so was just looking for anyone out there that's been through it.. was hoping for some positive stories to give me some hope that this will come to an end at some point.
Really am struggling fighting the urge to ride. I know mentally I can ride through the pain, but no doctor has really been able to tell me whether or not its going to set back any recovery or cause further issues. If its just a matter of "if you can deal with the pain, go ahead and ride" then its go time. If it's something that might reset the clock on this or make it worse, then I'd obviously not want to rush it. When I broke my foot it wasn't even bad, so I thought. I thought a quick 4-6 week recovery. Went out and bought an new bike. Welll.. I'll probably need to change a air filter in it before I even start it at this point from all the dust its collecting in the garage lol.
I broke my foot years ago and dealt with generalized pain for a couple years after. I switched to barefoot style shoes and within a couple months it was back to normal and never gave me issues again. Can’t even remember what foot it was at this point.
Best of luck to you. The pain sucks but it’s the psychological element of those nagging injuries that really wears on you. I hope you get some relief!
Hi there,
Sorry to hear about your injury! Only just seen this thread - fellow/ ex sufferer here!
Whilst racing enduro I was overtaking a couple of riders in a tight section, one moved out on me, which forced me to collide/ kick a tree. I managed to split between my big and second toe in my right foot - it was ugly. Underwent surgery to clean and close, but similar to you now months down the line, my foot was on fire. Walking was absolute torture!
I was fortunate enough to get a really good specialist who ultimately diagnosed with me CRPS and being knowledgable with the condition, along with my age/ hobbies he went above and beyond to ensure I could reduce the pain.
I had what they call a 'Pamidronate infusion' I was told that its effectiveness varies greatly - but it certainly worked for me. I believe they do a ketamine infusion as another option.
Next up is to do everything you can to ultimately desensitise the affected area - steps are probably a bit weird, but they worked for me;
Extreme heat cycles - hot water (foot spa worked lol) straight into icy cold water and repeat.
'Rough it up' an older towel that's gone a bit course - rub it all around your foot - it's not fun at all, then rub something smooth around it. Another thing is a smooth rug/ carpet to a course one, gradually getting more aggressive with your movements.
Foot massage balls - get various types of prickly/ less prickly ones and again, go from extremity to extremity, whilst also trying to increase the pressure you put through them.
Duvet - if you're anything like me the weight of bedding was too much, but moving the foot around all lot in bed is another good way to desensitise.
Mountain biking on flat ground - get yourself a pair of Five Ten Freeriders (*key part*), the thick, yet forgiving sole was perfect for me and enabled me to begin standing up and putting pressure/ weight through the foot. I must have looked crazy, if I rode anywhere to see people, I'd take a back pack with one of my crutches in. Get off the bike and onto the crutch!
Walking - again, put the Five Tens to use, they really made such a difference for me in being to walk around/ put weight through the foot/ get off the use of crutches to reduce the weight. Again, just ease into it and stick to pavements initially and look out for anything uneven. A simple stone, was still like walking barefoot on broken glass initially! Your foot will still likely feel as though it's on fire, but you have to continue to persevere.
When you can walk (still in the Five Tens) you need to embrace the pain and start targeting little uneven ground. Heading out in the forrest and walking on pine cones/ roots is a good idea, along with door thresholds - is a killer, but just got to keep it up. It takes a long time, but the more you endure, the better it gets long term. Obviously working your way down in sole thickness is the next step. Working down to slim soled Vans/ Converse and again, increase the uneven ground/ objects as you can.
Riding a mountain bike is another one that worked, by gradually increasing the impact through your foot. Start with a little curb, small bunny hops, then begin hitting easier trails and work your way up to more impacts/ jumps.
Jogging/ running - may seam really unrealistic, but again in time/ keeping up the above you'll get to a point where this is achievable. A little run-walk over a 5km distance, gradually increasing the amount you run until you're able to run the entire thing
I'd done my right foot, so I stayed off proper bikes til I felt like I could use the rear brake, but eventually you'll get to a point where you feel up to it.
I'm now about 4 and a half years since the injury, around 4 years since the infusion and whilst my foot is still bruised, still inflames from time to time/ gets a bit sore, I'm really no longer affected for the most part.
I wish you all the best with your recovery!
I have it too. So I got into this freak accident when I slammed a door and the whole window pane and window fell and crashed on my ankle. 2 months in it started swelling and changing colors. Now I'm 5 months in and just getting into a pain clinic. I've asked my physical therapist about the mirror therapy and I swear she like ignores me. She's had me in the "pool" which isn't like a pool more like a bathtub. Go to. Reddit and type in crps and then join the discord Feathers and Flames. They suggested a lot and they're super nice. They all have crps and gave me valuable tools. Have you been through a flare up yet? I did, it last 4 hours and I now know what it's like to burn alive.
Thank you guys for the recent replies. While the thread is only a few months old, I felt like I made some pretty good progress pretty fast. I kind of got to the point where I figured this might just be it, accepted it, and had to try to get back to somewhat of a "normal". I started working out again and would have some good and bad days.
I ran a mile, knowing it would be a mistake but wanted to prove to myself I could do it anyways. Haven't done that again since, that wasn't a great idea.
I did get back on my bike, I have rode probably 5 or 6 times since january. It was more scary than anything, but I feel like the support from some stiff brand new SG12's really has helped. Honestly riding my bike hurts less than most normal activities like walking does. the next day sometimes isn't the best, but I can get through a full hour of moto on my hour meter without a problem in a day.
I've never heard of those infusions I will have to check into that. I did get a few of the sympathetic blocks in my spine and that seemed to help a little bit. I am now off all meds except the gabapentin. The pain is the worst at night still.still kind of spreads allover my foot. Fortunately not any further up my leg. Hasn't done much swelling in a long time which is also good.
I think I'm probably as good as I'm going to get unless I want more meds just to manage it and I don't. I haven't tried any kind of pedal bike, I feel like that will hurt way too much. I will have to check into those shoes though. I've been wearing some really comfy new balances after going to a running shop and trying on a hand full of different ones, I picked the set that seemed to help me walk in the most normal way without limp and the least amount of pain. Wearing anything othre than those for a longer period of time hurts. I wear some recovery type sandals around the house as I have wood floor everywhere and that really also helps. When I walk around barefoot in the house its painful.
Crazy to think walking around my house hurts but riding my dirt bike isn't too bad. But I'll take that I guess!
My son 16 has something similar but it’s labeled for him as primary pain disorder … we were instructed the nervous system has to reset …. But unfortunately the burning and numbness is everywhere and gets exaggerated with use. Wrist and knees are the worst…. Steroids or Motrin have zero effect or help the pain. Been really trying to find a specialist anywhere … we were told it could be up to four years for it to reset.
Sounds like your sons is more wide spread and not local. I cant imagine the feelings I had in my foot being allover my whole body, I feel for him.
Interesting they aren't calling it CRPS. Sounds like the same thing. They explained the same thing, that it needs to reset. They initially did a block in my upper leg (the CRPS is in my foot) to hopefully "reset" things... didn't work.
They then did an injection in my spine.. did it 3 different times. to block the pain but to also hopefully "reset" things. No luck.
Mine has gotten to a tolerable level. I have bad days and, better days.. definitely not good days. Riding moto it feels OK due to the support in the boots. Running hurts, during and day after. I have some level of pain daily. THe swelling and discoloration has stopped.
I've given up on all meds, just dont like the side effects and they dont seem to have helped enough that it was worth it. I was on a lot of gabapentin 3 times a day as well as voltaren twice a day. I stopped gabapentin for months and was only taking the voltaren..but still wanted off that. I will sometimes use the voltaren gel, or take some motrin as needed now , to take the edge off but thats it.
Interesting they gave you a time line on when it could reset. I guess its a good thing they seem hopeful that it will. From my understanding with CRPS its not "When" its.. "if". It might get better, it might get worse, nobody knows.
I've just kind of accepted this is my 'normal' now. It could be worse things I guess.
Best of luck to you and your son managing it, I hope he finds some comfort!
also for anyone that has replied or might come across this I suppose I should give an update as its been a while since I made this post.
I did a lot of the "mirror therapy" and that seemed to actually help. Literally doing ANYTHING with my foot helped. The more weird sensational type of stuff I did with it (hot/cold, rubbing it on different textured things, etc), the more it helped.
I have been back riding consistently. The support of good boots makes it possible, honestly riding hurts less than walking most of the time. I couldn't imagine doing it in cheap boots. Spend your $ on good boots people!
I have been able to ride a pelaton a bit. I rode a real pedal bike once recently and it went pretty good. Running is still almost impossible. I ran 5 miles once this fall just to say i did it, but I paid for it for days.
Anyhow, everyones different with this stuff, but during the worst of it I was pretty bummed that I'd never get close to any of this stuff again... so while not everyone might recover to a level that i have, theres a chance that you might. Don't give up hope!!!!
I'm like a 4/10 on a good day and a 7/10 on a bad day. Is what it is I guess!!!
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