Hi all- I have been trying to resolve this issue for a few months and have been traveling the doctor circuit! Please bear with me as this may get a little long. Back in late April of 2010 I broke my 5th met. it healed fine after, and after about 6 weeks and some PT I was up and going again. Well, in late August I was having some mid foot pain, went to the ortho. doc, he was like probably just from walking different from 5th met. problem, anyway NOT- went back two weeks later as instructed if not better, had MRI done, had stress fracture of the 3rd met. put in fracture shoe- seemed to heal fine. He wanted me checked by endo. doc to make sure nothing was wrong with blood etc. all blood work came back fine. So towards Nov. I had pain all up and down lower leg (posted on site about it) and it seemed post. tib pain and also in foot. Back to ortho. doc for visits, had shots in foot for neuroma, end of December had MRI's of ankle and lower leg. Showed lots of edema in foot and calf- for calf similar to strain injuryor overuse injury is what MRI report said.
So, here is where the journey starts. Regular ortho. doc says he wants me to go see my foot and ankle ortho. that did my peroneal surgeries. Go see him and he looks at MRI's says tendons and ligaments look ok, foot has been through a lot of trauma, put the boot on for a few weeks. Also wants me to get checked for Lupus as he has always thought I have some sort of underlying inflamatory condition. Says check back with him if not better- sort of a brush off but not totally. Next to the rhuemy for lupus bloodwook(she looked at me like I was nuts- I have osteo arthritis). Then saw the pain management doctor that I see for my SI joint issues(thought I might as well get his opinion. Well, he put at totally different spin on it and it totally made sense. Could be CRPS - chronic regonial pain syndrome.- I do have some of the symptoms. Pulled it up on the computer, wants me to keep a log of my foot and leg symptoms told me about the sympathetic nerve block and wants me to read up on it as well. Then to the regular primary care doc. for normal visit- told her what was going on- she is pretty through - she wants a nerve conduction study ordered as well as for me to see a podiatrist ( had already made an appt.). Did nerve conduction study this past Monday- don't have official results- but he said that all was well except that it looks like where I had surgery on my fascia that is attached to my tibia there is scar tissue that is wrapped around the nerve and some cortisone might help that.Not sure what doctor will take care of that if that is the case, since primary care doctor is the one who ordered the test and they from what I have read they have to be careful not to hit the nerve. So if you have gotten this far. First thanks for reading- second I will take any and all thoughts. I go to the pod. doc. tomorrow as there is something with my toes that is not right, maybe from the neuroma. I can't go up on my toes, just tired of the pain, worn out by the end of the night.!
I noted with interest your reference to RSD/CRPS. Do you have any other symptoms of that other than the pain? The reason I ask is that I was told by a podiatrist on another list that he thought I had that, where I have NO symptoms other than the pain -- no discoloration, no sweating, no sensitivity to cold, nothing. I fear sometimes that doctors are wanting to throw that diagnosis out at any pain they don't know the reason for, but RSD/CRPS can only be diagnosed if all other reasons for the pain have been eliminated, and the pain is out of proportion to the injury (e.g. excruciating pain after having a minor surgery, etc.) It also shows up within 6 months of the initial injury. I find it interesting that it was a pain management person who said that -- kind of like a surgeon only looks at the surgical intervention, and a pain management person looks at the RSD end of things.
RSD is not a fun thing from anything I read about it after it was suggested in my case, and can be a vicious cycle of nerve blocks, pain meds, etc. Be very very sure before you let them convince you of that. What you describe does NOT sound like RSD to me -- it sounds like you have a joint issue or ligament issue in the mid-foot.
hi maggietaz, I have RSD i got it from surgery to remove a mortons neuroma between my toes. I also can not stand on tip toes, as for RSD, the sooner you can get nerve blocks the better your chance of going into remission. Feel lucky that your pm doc is questioning this so soon many people dont get dx until its too late, for me I was dx 4 months after I got it, and was still to late, I have had several nerve blocks, physical therapy and lots of pain meds this dec almost a year to the day of my initial mortons neuroma surgery which caused this mes, I had a spinal cord stimulator implanted. I still am on some meds but my RSD spread from my lft foot up my entire leg and into both hands within 6 months of having it. So you see if your pm doc suspects it start fast with the nerve blocks better safe than sorry I wouldnt wait until you were convinced you have it because you can go from pain and only pain to the full gambit discoloration, swelling,etc etc overnight!!!!! and without warning RSD is a thief in the night you can go to bed and wake up in the morn and RSD has stolen the life you once knew. Dont let them cut into the nerves of your feet NO no no, trauma to the nerves carries a high risk factor of developing RSD. good luck
kelly
Kelly, sounds like you've really run the gamut for sure.
My concern with this is that Maggietaz has not given one single other clue that it could be RSD (at least in what she posted here), such as extreme sensitivity to things like even a blanket touching the area, feeling like a warm shower is extremely hot, unable to wear a shoe, etc.
I'm not saying it isn't RSD by a long shot, but I worry that it's being thrown out there too easily, causing needless worry.
I do think she should start with measures to arrest it if the PM doctor really thinks it's that, but not to leave it there -- continue to see what other possible causes there would be. The only thing though that I've read in other posts re: RSD is that once you have that diagnosis on your chart, then any pain you present with is written off to that, even when it's something else.
I do have some of the other symptoms foot does change color,gets really cold, does get tingly . I also take Yolanda for migraines and that can be one of the medicines that they put you on for crps, so I may not know how bad it is! I am at the pod. Office now, so will see what he says.
hi michlei, I agree they should continue to test and be sure you have RSD but while testing I would definately be getting those nerve blocks and physical therapy right away, The reason RSD is so hard to dx is because it is different for everyone, some people may only experience pain but no swelling, or maybee no discoloration, some people will lose the hair on affected area others may grow thick coarse hair, some people may have cold limbs while others have hot, not everyone with RSD also have hypersensitivity. RSD is tricky tricky tricky. I believe if RSD affected everyone the same at the same pace then doctors along time ago would have a better handle on this. And maybee so many of us wouldnt be suffering as we are. Its hard to believe when you read these boards that there are doctors who know nothing about RSD or believe it is in the patients head, or worse that they are malingerers, or drug seekers. I feel lucky to have a good knowlegable dr. I read some of the posts on this site from people who have uncaring or unbelieving drs and I get angry for them.
kelly
I do have some of the other symptoms foot does change color,gets really cold, does get tingly . I also take Yolanda for migraines and that can be one of the medicines that they put you on for crps, so I may not know how bad it is! I am at the pod. Office now, so will see what he says.
That does sound like it could be for sure, but I still want you to pursue other avenues at the same time to make sure it's you don't have other issues still. You'll have enough to deal with if it's RSD without an undiagnosed injury complicating things.
Hi all,
Back from pod and from work. First need to correct my last post- the medicine that I am on for my migraines is topamax!- not sure why it came out spelled the way it did. So here is what the pod had to say- first he examined my foot - heard the story etc. - also wanted to take xrays- he is also very through and he reminded me which I had forgotten, I had a stress fracture of the second met. on this foot about three years ago. So after the xrays he showed me that the 5th met and the 3rd met are sitting up higher then the others so that will cause some of the pain. He also feels that I have two nerves that are irritated because the space between the mets is shifted due to the way the bones healed- it is not bad- just a touch smaller then it should be- so it will be trial and error to fix it. He is not convinced that it is CRPS- said the change in color on the one area of my foot is mostly likely from the cortisone injections as sometimes that will happen. All I know is that I am so very frustrated to know that I am going to be dealing with this issue for a very long time, but on the bright side, he is checking to see if insurance will pay for an orthodic, that would help with the met. pain and at least I know what some of the pain is from. The calf pain is no better. I am trying to decide if I should wait and not get the sympathetic nerve block done next wed. and wait and see the nerve conduction study result as that doctor (that did the study)said something about a nerve being trapped in some scar tissue, and some cortisone would help that- I need to decide by tomorrow as I will be charged if I don't cancel by tomorrow.
I think there is some pain involved. They don't knock you out,they do give you valium. I will see what Kelly says as well. Thanks for your quick response.
I felt absolutely no pain with the sympathetic nerve blocks, I was put to sleep for them because I am big chicken. but I never had any soreness at all what so ever. not for the lower lumbar for my foot. Now the stellate ganglion they do in your neck, for my hands, I was sore and talked funny for about 3 days afterwards, but thats for arms and hands, you should have no problems. I hope its not RSD.
kelly
The Following User Says Thank You to kelly4004 For This Useful Post: maggietaz (03-04-2011)
Well, I has the nerve block this morning. Took some Valium since then recommended it. After he was done he had said the test would be did it feel warm, well at first it didn't, but then After a minute it started to feel warm. He said that is confirmation that it is CRPS 1. Foot and calf are still warm, four hours later and no pain, a little bit of pain in the groin area which he said is normal from the collection of fluid from the injection. My foot hasn't been this wam in months! Will update later.
The following user gives a hug of support to maggietaz: michlei (03-09-2011)
I'm sorry to hear it is indeed CRPS, MaggieTaz. However, hopefully you have caught it early enough.
I guess I have to go back and read as I must have missed something -- i thought your doctor said it was b/c of cortisone shots, surgery, etc. that you were having pain in that area?
I am also wondering about the "if it's warm" thing -- I was under the impression there was no test for CRPS???
Will you now have physio which focuses on CRPS? I understand it has to do with de-sensitizing the area?
I was dx'd with RSD/CRPS in December. I had an external fixator on that I had removed in Sept. Within a month I was pretty sure it was RSD and my PT also believed it. Saw OS in November who suggested Lyrica (turns out I'm allergic) and some PT exercises. It continued to get worse and PT referred me to PM dr. in December. He dx'd me that day. I had hair growth (thick and black) on foot, which has since stopped, color difference, temp difference, skin difference, extreme sensitivity to touch, and also felt like I was getting skinned alive (burning pain).
I have recieved weekly sympathetic nerve blocks since Dec. The goal is to get them spread out to hopefully one every 4-6 mos. We were on the 9 day plan but my most recent surgery (osteomyelitis) set us back and I'm every week again for a few more shots before spreading out again. The blocks heped a lot. At first it was only a day or two. Now it lasts about a week. Overall though, I can sleep most of the night with my foot under the sheets which is something I coudl not do before. The blocks helped with the burning and so it was minimal. I was blessed to have a PT that was on top of things and got me to see my PM dr. right away. I can't imagine if he didn't catch it.
RSD is not fun, but with a good PM dr. and those sympathetic nerve blocks, it can get to where you don't think about it 24/7 and it won't rule your life.
There are precautions you need to take, like don't use ice. That makes things worse. ALso, if you ever need a surgery, talk to your PM before about the blocks you should get. Any surgery can really make the RSD/CRPS come back full blown. I told the anesthesia department before my surgery last week and they were very good and did the blocks my PM suggested and so far so good.
Good luck with this all. I found that my PM dr. has now in a way become my main dr. for anything foot and ankle and leg related. THe RSD/CRPS covers most of that area and if the foot needs to be touched, PM dr. needs to know about it. I found that out the hard way when my OS gave me a cortisone shot and it got me back to the pain I had before all the blocks. We got it back to where I was before the cortisone shot. I called PM dr. before this surgery and after the surgery to update.
I did read up on RSD and post on the board there once or twice b/c an online person I was corresponding with (a podiatrist in NY) said he thought it might be RSD that I had, and so did my PT.
However, since I have started taking anti-inflammatories, the extreme sensitivity has stopped, and my pain is localized to the area of the peroneal tendons. I think I just had so much going on with my foot re: the fracture, tendon damage, etc. that it was sensitive due to lots of inflammation.
I have no real color change, no hair change, etc., no sensitivity to sheets, etc., and can use ice etc. with no problem. My foot does have some residual bruising, but it's been the same since I broke my foot, just taking a long time to fade (it is fading slowly though). The swelling is in the area of the peroneal tendons.
Just had a CT scan, so hope it shows why I'm having issues still over 4 months since I broke my foot. Ortho says tendinitis, but it feels more like a tear as the tenderness is very specific to the cuboid area and around behind the ankle.
Glad that both you and MaggieTaz were able to get your RSD diagnosed quickly, and that the treatments seem to be working.
MaggieTaz, let us know how long your nerve block works. Hopefully a long time! Do you go back to see the doctor again in a week or two?
HI Maggietaz, I am sorry you have RSD, starting the nerve blocks soon is great dont get discouraged if they wear off anywhere from a few hours to a few days this happens alot with RSD, my blocks only lasted 3 days at a time. But with some people the more blocks you get the longer they will last, also set PT apts for soon after your blocks like the next day, PT works with desensitizing and keeping mobility in your limbs RSD can freeze your joints up, my toes are frozen and my hip and my right shoulder are starting to do the same thing. Krsj5kids has a good point with the ice. STAY AWAY, before I was DX my pod, kept telling me to ice ice ice, I tried to explain to him that ice was very painful felt like i was being cut open by a burning hot knife, I used a heating pad instead. He thought I was nuts. but he didnt know about RSD.
good luck kelly
Well the warmth has faded,but felt great well it lasted. I really think he caught this early as I don't have the intense burning or stinging pain and can touch my lower leg almost anywhere. Doctor said I can start back to exercising which I have not been doing.
Kelly I think I can feel the pain coming back in my calf already but I also have some scar tisue wrapped around the nerve below the calf so that is an issue as well. I will see now things go over the next few days and then call the doctor's office. Thanks for all the information.
Maggietaz: Re exercising -- If what I've read from other people who have this, you have to be careful with exercising, and Physio geared to RSD is important to de-sensitize. Maybe it depends on each individual situation though?
I'm glad you're still without pain for the most part.
Hi, I would def not try excercise on your own you want to find a PT familiar with RSD, desensitizing is a big part in PT but mobility is major with RSD if you dont use it you will lose it (the ability to use it) but if you over work yourself you can cause a flare and set your self back in the pain cycle, there are specific stretches, and excercises that need to be done but should be done under the watchful eye of a professional to be sure you dont overdo it, the desensitizing they will start by rubbing thins like cotton balls on your hypersensitive parts then slowly graduate to more irritating harsh things when I started believe it or not the cotton ball my as well have been a sharp razor cause that is exactly what it felt like. unfortunately I am still very hypersensitive on my foot, which is where my RSD started. But I have no hypersensitivity in the areas it has spread to. But physical therapy along with the nerve blocks so soon will give you the best chance of remission. The sympathetic block works great while its working, some people can have them last for a month or more I will pray that this will be what happens for you! let us know please even if you are feeling good, so many people dont post their good outcomes, and those are just as important as the bad feeling ones. We like to hear that people are doing good.
Kelly
Maggie,
My first block only lasted about 2 days. The second maybe 3. Each one got to where it lasted more and more. I've been doing them on a weekly basis for 3 mos now. We are now working on every 9-10 days. BUT, I will say that the pain is manageable since the blocks. I can go to PT and actually get worked on. Before my PT couldn't even touch my foot to work ROM. Also, I can sleep under my sheets most of the night. I still find it more comfortable to put my foot out, but before I had to have it off the bed. I even went barefoot the other day! That was HUGE. I usually spend all summer barefoot and I hadn't been able to stand the feel of the floor since last fall. So don't get discouraged if the block doesn't last too long the first time. Each time will get a bit better. Every once in awhile I take a step back, but all in all, each block helps and lasts longer.
Wanted to add that my PM dr. wants me to get PT right after the nerve block because that is when it will do the most good. PT is important, but scheduling it with the nerve blocks is also important.
