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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

  • Is it RSD?

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    Old 06-08-2013, 12:23 PM   #1
    LC4271
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    Is it RSD?

    Gosh, I will try so hard to keep this as short as possible, but it's hard being my problems started last Oct., 2012. I'm a runner, and in 10/12, I got a stress fracture in one of the sesamoid bones of my rt foot. Needless to say, I have not followed the textbook symptoms, & if you knew me, there's no surprise there. In the beginning, the pain wasn't all that bad. But by mid-November, it started to get really bad, and began spreading to other areas of my foot. My Dr was making my appts. every 6-8 wks apart, as I don't think he thought my injury was all that big of a deal...put a boot on and sent me on my way. By late Dec when things were not improving, he gave me a cortisone shot, which did nothing but give me electrocuting pains for days, which is something that had already been going on. He had mentioned RSD, but I know he didn't think I had/have it...because he didn't think I was following whatever his textbook guidelines were. He sent me for a bone scan in Jan., which was neg. Things cont. to not improve & I would call to tell him that, & he simply wouldn't respond...SOOO frustrating. At my last appt w/ him in Jan., he referred me to an orthopedic specialist (1st Dr was a Sports Med Dr...was also an orthopedist), & after that appt. pretty much wrote me off. In early March, the new Dr. took an x-ray and said he thought my sesamoid was going through avascular neucrosis...dying...needed an MRI & CT to confirm (which it did), but that is why I had all the pain, he said, and my nerves were just ticked off. At that time, he put me back in the boot & from that point fwd, the pain got significantly worse! I didn't put it together for a few weeks or more, but realized it was the constant "touching" and pressure of that boot that was irritating the heck out of my foot. I would often get this feeling like someone was literally cutting into my foot and ripping everything out of it...torture! This was quite different than the "bone" pain I would get...that was more of a throbbing ache. This nerve pain...that's a whole different ballgame! Not all the time, but often, my sheet would hurt my foot. Simply resting my foot on the floor could be excruciating at times, but not all the time. I had, and still have, pins and needles in both feet, almost 24/7...and often running up the legs. Also beginning in March...literally, starting out of the blue in ONE day, three fingers in my right hand began to burn/ache beyond words, and in the beginning, one finger was extremely sensitive to touch, that has since ceased. Since March, the finger/hand pain hasn't stopped..and the burning often runs up the arm. It is worsened by my using the hand, which obviously makes sense. I never had my finger or toenails grow really fast, but for a few months, they essentially stopped growing...didn't need to cut them at all. And the white part of the nails (fingers & toes) has gotten really wide, like a French manicure, and is rolling like a waves. My dr. suggested a fungus, but I have no other symptom? They aren't yellow, thick, dark, there is no yuck growing under them, etc. And all the hairs on the toes of "both" of my feet, disappeared. It's coming back on my left foot, but pretty much still gone on the right...and I used to shave my toes, cause that's gross to have hairy toes! Oh....and often, but not all the time, my left foot will mimick the exact same pain I get from the sesamoid bone in my right foot. I still have pain from the bone on occasion, because the bone is dying, which I am currently in week 7, I think, in trying bone stimulation via a home ultrasound machine.

    In recent weeks, my pain has improved in my foot...the awful, "cutting into my foot" feeling has finally subsided after months. I have a surgery scheduled on July 5th to remove the bone, if the bone stim does not work, bring it back to life, I guess! Removing the bone is a LAST resort....as a runner, it is NOT something I want to do. But I also went through this in late Jan. where the pain started to subside...and after a few weeks of "my version" of no pain, I picked up light running 2 days / week and the pain returned with a vengeance. The pain I had prior to it improving in Jan., was not as bad as it was when it returned with a vengeance! Being the pain is subsiding again, I'm afraid to cancel this surgery, because the doctor schedules his surgeries 3 mos out...and this nightmare has gone on long enough. This may sound dumb to a lot of you, but I figure the only way to know if I will need this surgery, is to run on it again and see if the pain returns. I haven't exactly tried to baby it, because I'm running out of time and need to know. Pretty much immediately, the pain returned; not as bad as before, but it's back, so I "think" I got my answer. I just don't know what else to do. They diagnosed me with sesamoidtitis in the beginning as well, which is inflammation of the bone and tissue. With runners, if the sesamoidtitis is bad enough, once you irritate it, it's not going away...and from what I've read, in worse case scenarios, you have to remove the bone.

    ANYWAY....so sorry this is so long, I've just wanted to ask all this for so long. When I read the message boards...no one seems to talk about their actual pain, or not the posts I seem to be reading. What the pain is like....are you in pain all the time? How bad is it? Is it daily? Part of the day? Moments of the day? I've been told by my PT, for example, I can't have RSD, because I'd be in excruciating pain ALL the time, and wouldn't want to walk or do anything. Well, I've never been in pain ALL the time...but the times I'm in pain...which could last a minute or 10 minutes...or more...it has and CAN be excruciating! It's a rather UNPLEASANT feeling when it feels like someone is taking a knife and slicing your foot open, and tearing everything out! And, the fact that the bone pain is mirrored in the left foot, does that mean anything? And the fact that in ONE day, and every day since....I have this awful, burning, aching pain in my right hand/fingers? My hands also shake quite often, even my GP, not the foot dr, noticed that one on her own. I also have atrophy, have had it since at least February, over the injured area of my foot (the ball of my foot looks flat, not round, full and padded as it should be, walking on bone, basically). The foot dr. said it's because I'm not using the foot and I'm favoring my left foot...well the dr. is not walking in my body, and he is WRONG! I make it a point to walk on my right foot the same I would my left, and I haven't been in a boot for a while now. Once I figured out the boot is what was upsetting my foot even more and exasperating my symptoms, I stopped wearing it...and when he put me back in the boot in March, I hadn't been in the boot for 2 months prior to that. It was also not long after I started wearing the boot In March, btw, is when my hand/fingers began hurting...maybe within a week?

    I did recently have nerve conduction testing...which of course all was totally fine...but I asked if that would show anything related to RSD or small nerve damage, and they said no. It is my GP who ordered that test...she is really the only one listening at this point.

    As I said... if you've even stuck around to read this...it's just that I've been ignored since day one. Now I have a dead bone...not sure if that could have been avoided or not...that happened due to lack of blood flow, and add that I was born with the bone being bipartite, split in two...which I guess complicated matters? But Idk if I have RSD, if my symptoms are even related to RSD? The fact that as far as my foot is concerned, the excruciating pain seems to of subsided in the last 3 weeks...so does that then mean I couldn't possibly have it? BELIEVE ME, don't get me wrong here...I do NOT want it!!!!! Let's be clear there!!! But as I've said to the doctors...I'm not trying to make up diagnosis'....I just want to be heard and I don't want anything to be missed, especially something this serious. I know the window to an early diagnosis is already history, but regardless....I need to know if I'm totally out to lunch here in my thoughts....and should I lay them to rest, or should I keep pursuing the possibility and try getting these doctors to listen? And btw....what type of doctor do you even see for RSD?

    Ok...gosh, so sorry....I will stop writing now. I hope you're not all sleeping now.

    Last edited by LC4271; 06-08-2013 at 12:35 PM.

     
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    Old 06-09-2013, 09:17 PM   #2
    cyndel
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    Re: Is it RSD?

    Also know that not everyone's RSD acts the exact same way. My favorite part of your post is your PT telling you that you can't have it, does your PT have RSD and is therefore an expert on the subject? Too many health care providers don't know much about it at all so if a Dr. doesn't, why would a PT think they know it all? I had a Dr. tell me it moves down not up as I was telling her mine was doing. Well, it is continuing to move up my leg so I guess there is another "fact" on RSD that is wrong. For as widespread as this seems to be, it is just too bad that there isn't more knowledge out there, almost the only people who know a lot about it are the patients!

     
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    Old 06-10-2013, 07:44 PM   #3
    jewlz67
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    Re: Is it RSD?

    Sad to say but Cyndel is totally right, the ones who know the most about RSD are the patients! I had a top specialist in Chicago tell me that it doesn't spread to other parts of the body. Yeah, ok!!! Funny too Cyndel, my RSD moved from my left ankle up my entire left leg! With my RSD, I started out with the pins and needles feeling. I injured my ankle in May of 2012, they didn't put me on crutches till mid June, then diagnosed at the end of June. My symptoms were the pins and needles, burning pain, and a deep aching in my calf. I have times when I am at a "low simmer" and when it flares up, it feels like somebody just poked the fire in the fireplace and started it roaring up again! I also have the color changes in my foot as well as it feeling either colder or hotter than the other foot. This disease does affect blood flow so that is where the temperature changes factor in. I had a doctor try to tell me I don't have RSD because at my visit with him, I wasn't presenting with the symptoms. Ok....I was actually having one of my good days so the skin sensitivity wasn't there, my pain levels were great, and my feet were normal...no swelling or color changes. The nurse case manager from work comp told this doctor that she has been there with me in the office room and physically watched my foot change colors! I am very thankful she was at that appointment because she has shown them that this isn't just nothing. Do you get the skin color changes? Just remember, not every body has the same symptoms, the same pain tolerance, the same beginning location, etc....but we all have to deal with this! Hang in there and if you need us, you know where to find us.

     
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    Old 06-11-2013, 04:03 PM   #4
    SloRian
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    Re: Is it RSD?

    Hi LC4271, and welcome! We all wish you didn't have a reason to join the board, but hope you find as much help and welcome here as we have.

    No worries about the long post; RSD is frightening and confusing, and it helps to vent!

    Strange about the PTs; our PT, who was wonderful with our multiple surgeries, had trouble acknowledging our RSD (both me and my daughter).

    Best wishes and prayers for some good results, and feel free to vent here as much as you need. I hope you can find some helpful info. I'm so sorry to hear of your problems. My daughter's RSD started with a simple stress fracture, too.

    Last edited by SloRian; 06-11-2013 at 04:04 PM.

     
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    Old 06-28-2013, 07:30 AM   #5
    ALittleLoopy
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    Re: Is it RSD?

    I'm so sorry you have been going through all of this. Unfortunately, this drawn out, "no, you'll be just fine if you do X" statement from many health care providers is far too typical. Remember, you know your body, so listen to it - it sounds like you already feel that you have RSD, but want to be sure, and are looking for a doctor to verify what your body is already telling you.

    As for my pain, I most always have a deep ache, which spikes to a hot, searing knife-type pain that lasts for hours (or until the meds help). Like you, I also have burning in my foot - sometimes it hits both of my feet. I keep several ice-packs in the freezer (I use old jeans to make denim freezable-or-microwaveable bags which I fill with Flax). The Flax won't mildew, and holds the cold nicely- but with the denim cover, it isn't quite as cold on the skin as a regular ice-pack. (They are also GREAT for moist heat in winter!) I put these on my feet, or I use a cooling foot lotion. I too have started to have the pain and weakness down my entire arm, and tremors in both hands, especially if I have been using my hands for a bit. I'm not sure if I've hit full body RSD, but I do know mine is spreading.

    !!! IMPORTANT !!!
    My Anesthesiologist (she's a specialist doctor who works in the chronic pain clinic) stressed that it is imperative that I have a spinal block IN ADDITION to the planed surgery pain control plans. (I'll be having a knee replacement when I get the extra weight back off.) She said this can help prevent RSD from getting worse due to the surgery. It is important to remember that ANY medical treatment - all the way down to rough handling of a limb during an exam, or even a simple shot - can flair your RSD, and make it worse, or even cause it to spread.

    I wanted to share this tip with you, in the hopes that your surgical team may be willing to take this precaution.

    OH!!! In case we haven't suggested this yet, PLEASE get checked out by a Chronic Pain Clinic/Doctor. There are still some who aren't great, but so far I've found that they truely understand serious pain, and can work with your other doctors to treat the injury, while being careful not to further agravate the limb. Good luck, and I hope that maybe something I said will help you.

     
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