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  • Could angioedema be a symptom?

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    Old 10-19-2016, 09:53 AM   #1
    3DMommy
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    Could angioedema be a symptom?

    Following a surgery in january, my doctor thought I developed CRPS, the pain doctor he sent me to disagreed because I did not have every symptom of CRPS or RSD.


    Recently I have developed angioedema and hives over my full body. It has been over a week and still no cause has been found, and treatment has only been moderately successful. Could this be a sign or is it not related?

     
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    Old 10-28-2016, 12:19 AM   #2
    FunFact
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    Re: Could angioedema be a symptom?

    Just registered to help answer your question.

    I suffer from RSD in the left lower extremity - from my toes up through entire leg.

    In MY experience, yes, I do suffer with angioedema - I DO have deep tissue swelling (for no other reason than the RSD/CRPS). Some days the appearance and the swelling are worse than others. Sometimes the skin appears extremely blotchy, similar to someone with Raynaud's phenomenon. My swelling is visible to others and it "moves" throughout my entire limb. Sometimes it's more pronounced in the foot, other times it's visible from foot to above the knee and the skin appears shiny. Then there are other days where the swelling is not as pronounced or outwardly apparent to others.

    I do feel tissue swelling and it feels as if the tissues are being inflated and stretched like a balloon. I don't know if my description makes sense, but if you've ever consumed a lot of sodium and experienced the feeling of extreme fluid retention, that would be another way I would describe that particular sensation.

    THANKFULLY, I have a physical therapist, surgeon and pain mgmt specialist who are all versed in RSD/CRPS and were able to put together the symptoms I was experiencing (and not necessarily experiencing all at the same time) and recognized it for the beast that it is. The reason this is important is that RSD patients may not exhibit every major symptom at the same time, if at all. And the sooner it's diagnosed and treatments begin, the better the chances of remission or downregulating.

    Mind telling me what other symptoms, if any, you described to the pain management specialist or the symptoms your MD noted with which the PM MD disagreed? I truly hope you do not have to contend with RSD!

     
    Old 10-28-2016, 04:08 AM   #3
    3DMommy
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    Re: Could angioedema be a symptom?

    Quote:
    Originally Posted by FunFact View Post
    Just registered to help answer your question.

    I suffer from RSD in the left lower extremity - from my toes up through entire leg.

    In MY experience, yes, I do suffer with angioedema - I DO have deep tissue swelling (for no other reason than the RSD/CRPS). Some days the appearance and the swelling are worse than others. Sometimes the skin appears extremely blotchy, similar to someone with Raynaud's phenomenon. My swelling is visible to others and it "moves" throughout my entire limb. Sometimes it's more pronounced in the foot, other times it's visible from foot to above the knee and the skin appears shiny. Then there are other days where the swelling is not as pronounced or outwardly apparent to others.

    I do feel tissue swelling and it feels as if the tissues are being inflated and stretched like a balloon. I don't know if my description makes sense, but if you've ever consumed a lot of sodium and experienced the feeling of extreme fluid retention, that would be another way I would describe that particular sensation.

    THANKFULLY, I have a physical therapist, surgeon and pain mgmt specialist who are all versed in RSD/CRPS and were able to put together the symptoms I was experiencing (and not necessarily experiencing all at the same time) and recognized it for the beast that it is. The reason this is important is that RSD patients may not exhibit every major symptom at the same time, if at all. And the sooner it's diagnosed and treatments begin, the better the chances of remission or downregulating.

    Mind telling me what other symptoms, if any, you described to the pain management specialist or the symptoms your MD noted with which the PM MD disagreed? I truly hope you do not have to contend with RSD!

    Thank you so much, the full body angioedema is gone (thankfully), it was an allergic reaction to my copper IUD.

    The other symptoms my doctor was concerned about are the angioedema in my ankle, a constant burning pain that feels like my leg was doused in gasoline and lit on fire, the hypersensitivity to touch and pain, a loss of temperature sensation, and numbness in some portions of the affected leg. The symptoms started literally the day after my ankle reconstruction.

    The pain management doctor said it wasn't CRPS/RSD because I did not have changes to my skin, gave me a lidocaine cream and walked out. By that point I had already tried gabbapentin, which didn't work, I was recently put on lyrica, which has worked wonders to control the constant burning pain, and I did months of desensitization therapy with PT before continuing at home which has helped some as well.

     
    Old 10-28-2016, 11:14 PM   #4
    FunFact
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    Re: Could angioedema be a symptom?

    I'm glad you all were able to link the reaction to the copper IUD!

    Quite honestly, you've provided quite a few keywords describing RSD and some of the things I've personally experienced with RSD...

    If you're self-pay, I would probably try to get another opinion from a different pain mgmt specialist. Is the PM MD regarded as "the best" in your area or one who specializes in RSD/CRPS? I know that this may be next to impossible to do if you're a workers comp patient, but maybe your surgeon could refer you to another PM MD if he disagrees with the diagnosis or lack thereof from the first PM MD.

    About the skin and color of the skin - I initially didn't have super shiny skin, but comparing one side of the body to the other, the side with RSD is a different color from the "normal" side of my body. My foot only appears shiny when it's extremely stretched with edema, but otherwise I would say that the skin looks normal. It's only the knee that looks shiny most of the time. Again, side-by-side comparison almost always shows the side with RSD as appearing more pink/red.

    I already described the angioedema in my previous post - that began almost immediately after a minimally invasive procedure. Yes, the constant burning pain is something that I experience, as well. I don't recall the burning sensation happening immediately afterward, but it did start within the first few weeks after my procedure. Sometimes the "burning" is worse than others, but it's always there as a reminder. Bathing is not something I look forward to at any given time.

    I also experience more pain and burning when a breeze blows against my skin, like from a ceiling fan. So I find myself almost always in sweatpants (even in 100 degree weather) AND covering the one leg in a blanket to "protect" it from even a slightest breeze.

    I do experience hypersensitivity to touch and will only allow someone to touch my leg with the top of their hand during an appointment so they can compare the temperature differences between the two limbs. The side with RSD is noticeably colder, which brings me back to the "burning" sensation that we try to describe. I don't recall where I read this, but this stuck with me as possibly the best description of the burning sensation I experience with my RSD. (here goes) ...

    Imagine making an ice bath in something large enough to dunk your hand into. IF you were to dunk your hand into the ice bath and leave it in there for as long as you possibly can take (I think the person might have stated to leave it completely submerged no less than 60-90 seconds), the burning sensation experienced from the exposure to the extreme cold temperature is similar to the burning sensation we feel with RSD. Now I'm not suggesting that anyone with RSD really try this, but if you've ever experienced prolonged exposure to cold with icy and snowy weather, then you might remember feeling as though you had frostbite. You might've looked forward to getting out of the freezing cold, but the extremely painful "burning" sensation felt when your body went from extreme cold to exposure to warmth ... THAT is the best description I've ever heard and it hits home with me! I initially thought that gasoline/fire was a good way to describe the pain to a doctor, but the frostbite sensation is now a more accurate description, in my opinion.

    The only description of yours that I guess I don't fully understand is your loss of temperature sensation? Meaning that you aren't able to distinguish differences in temperatures? Do others physically feel a difference in temperatures when one limb is compared to the opposite?

    SO (long story short) if you are experiencing all of these things, I would definitely understand if you were to receive a diagnosis of RSD/CRPS. And anything less might make me search out another specialist who recognizes that not all symptoms of RSD may be apparent or detectable on any given day. Some of the symptoms I experienced initially (like extreme sweating in that leg) come and go at very random times. Nevertheless, that is STILL regarded as a symptom and not every RSD patient ever reports that symptom. So I believe it takes a true SPECIALIST to recognize the subtle differences and to make an accurate diagnosis.

    I'll be happy to provide additional insight and support to you! I know it's difficult trying to find answers for the pain you're experiencing. All we can do is take it one second/minute/hour/day at a time and hope that the next is better than the last.

     
    Old 10-29-2016, 12:08 AM   #5
    FunFact
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    Re: Could angioedema be a symptom?

    Quote:
    Originally Posted by 3DMommy View Post
    The pain management doctor said it wasn't CRPS/RSD because I did not have changes to my skin, gave me a lidocaine cream and walked out. By that point I had already tried gabbapentin, which didn't work, I was recently put on lyrica, which has worked wonders to control the constant burning pain, and I did months of desensitization therapy with PT before continuing at home which has helped some as well.
    I knew my ramblings would not address everything you typed! haha
    The changes to your skin?? He didn't elaborate? Maybe I did address this, but was he searching for shiny skin? Do you see a difference in color when compared to the opposite foot/ankle/leg? Is the skin dry or scaly? Have you noticed anything odd with your toenails (brittle and cracking easily)?

    I would ask the PM MD to clarify WHAT skin changes he expects to see before he considers an RSD/CRPS diagnosis. (yes, I'm that direct when it comes to my health)

    Neurontin, Lyrica and a myriad of meds were tried here, as well as mirror therapy. About the only protocol they did NOT push was desensitization during PT, because of the extreme pain I was experiencing. I've since done my own as far as exposing my leg to water as hot as I can stand. I will draw a bath and dunk myself until the water starts to cool, drain some off and replace with hot water again. I fully believe that is how I can stand to bathe at all and prevented me from a future filled with sponge baths. Granted I still have to mentally prepare, but I push myself. But desensitization involving brushing/dry brushing ... nope ... isn't gonna happen here anytime soon.

    Keep up with any desensitizing you've built up to ... that's something you definitely don't want to lose!

     
    Old 10-29-2016, 07:49 AM   #6
    3DMommy
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    Re: Could angioedema be a symptom?

    Quote:
    Originally Posted by FunFact View Post
    I knew my ramblings would not address everything you typed! haha
    The changes to your skin?? He didn't elaborate? Maybe I did address this, but was he searching for shiny skin? Do you see a difference in color when compared to the opposite foot/ankle/leg? Is the skin dry or scaly? Have you noticed anything odd with your toenails (brittle and cracking easily)?

    I would ask the PM MD to clarify WHAT skin changes he expects to see before he considers an RSD/CRPS diagnosis. (yes, I'm that direct when it comes to my health)

    Neurontin, Lyrica and a myriad of meds were tried here, as well as mirror therapy. About the only protocol they did NOT push was desensitization during PT, because of the extreme pain I was experiencing. I've since done my own as far as exposing my leg to water as hot as I can stand. I will draw a bath and dunk myself until the water starts to cool, drain some off and replace with hot water again. I fully believe that is how I can stand to bathe at all and prevented me from a future filled with sponge baths. Granted I still have to mentally prepare, but I push myself. But desensitization involving brushing/dry brushing ... nope ... isn't gonna happen here anytime soon.

    Keep up with any desensitizing you've built up to ... that's something you definitely don't want to lose!
    Thank you so much. It is good to have an idea of what it is even if it isn't official. I spent the majority of my post op PT just doing desensitization, it was painful but that stupid box they used did help. As for the tempature loss, extremely hot water feels ice cold.

    The PM MD was a butt, and unfortunately, as a veteran with no other insurance, I go to the VA. I just he was looking for shiny skin which I don't have. Both feet and legs look almost completely identical, the bad on is slightly darker in color, but it's almost imperceptible. He even refused to do anything, even after my surgeon, PT, and the doctor who did my EMG recommended trying a nerve block before I got to him.

    At this point with he lyrica, I am at a manageable level, the burning pain I'd down to a mild annoyance, and I can almost tolerate socks. I was hoping to be able to wear shoes again by winter, but that doesn't seem likely at this point.

     
    Old 10-31-2016, 07:47 AM   #7
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    Re: Could angioedema be a symptom?

    Quote:
    Originally Posted by 3DMommy View Post
    As for the tempature loss, extremely hot water feels ice cold.

    The PM MD was a butt, and unfortunately, as a veteran with no other insurance, I go to the VA. I just he was looking for shiny skin which I don't have. Both feet and legs look almost completely identical, the bad on is slightly darker in color, but it's almost imperceptible. He even refused to do anything, even after my surgeon, PT, and the doctor who did my EMG recommended trying a nerve block before I got to him.

    At this point with he lyrica, I am at a manageable level, the burning pain I'd down to a mild annoyance, and I can almost tolerate socks. I was hoping to be able to wear shoes again by winter, but that doesn't seem likely at this point.
    Wondering if there is another PM MD on staff at that VA location? You mentioned the nerve block. Is this PM an Anesthesiologist? Or they were supposed to send you to another MD prior to going to PM? Although not very pleasant, a nerve block could definitely help. I'm hoping they shared with you that with RSD/CRPS, it's best (better success) to have nerve blocks sooner rather than later.

    You also mention that you had an EMG ... did they perform any other diagnostic tests like a Doppler or an ankle-brachial index (ABI). The ABI compares your blood pressure in your ankle to your blood pressure in your arms to see if there is a difference in blood flow. They would do this to rule out peripheral artery disease (PAD). Just tossing that out there, because PAD shares a few similarities with RSD/CRPS such as numbness/tingling, temperature and color changes. Maybe they discussed that with you and have already tested, because the Lyrica is prescribed for peripheral neuropathy. (typing as I think)

    I don't recall reading about or hearing anyone with RSD stating that they could not perceive temperature changes. I suppose with RSD/CRPS anything is possible.
    I know that when we're in pain, sometimes our brain has a different way of trying to process and verbalize what we're experiencing. If anything, I'm more sensitive to any temperature fluctuations. Like the bath scenario I mentioned before. One would think that a constantly cold limb would welcome hot water but perceive the water as only being warm; however, that's not necessarily the case. The nervous system is out-of-whack and the nerve endings so sensitive that, what is luke warm water to the rest of my body, my affected leg initially perceives the temp is scalding hot. Temperature regulation is wacked out completely. Exposure to cold temps makes the affected body part(s) colder. But try to isolate that freezing body part and ... gently apply a heating pad only to that area ... the skin soon heats up so much that sweat pours from that area and it feels like the tissues/bone has reached normal core temp. At other times the skin feels the heat, the brain recognizes that the dermis is hot and begins to sweat, but simultaneously perceives deep tissues/bone as cold at the same time. Hope that made sense.

    I'm glad the Lyrica is working for you a little and you're almost able to tolerate a sock. As far as trying to work yourself up to a shoe during winter ... I know that Crocs aren't fashion-forward (haha), but I find them tolerable. If you haven't already discovered them, Crocs are a brand that are extremely lightweight, fit fairly loose, and you should be able to easily slide your foot inside without tightening anything around your foot. You don't have to wear the strap around the back of your ankle - just push the strap up and over to rest on the top of the shoe. They make several different styles that are lined with fur and would provide some warmth (and at least a little protection) during the winter. If you search for fur-lined clogs you'll see quite a few brands like the Crocs, Skechers, MukLuks, Uggs. I have some lined Skechers, as well. A family member also purchased slippers for me that are lined with what feels as soft as rabbit fur (sorry I don't know the brand). The fur manages to heat my foot to a tolerable temperature. Anyway, just a few suggestions that may prepare you for the dreaded cold.

    Hope you have a relaxing Halloween and your pain isn't too frightful today!! (booooo ... I know)

     
    Old 10-31-2016, 08:16 AM   #8
    3DMommy
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    Re: Could angioedema be a symptom?

    Quote:
    Originally Posted by FunFact View Post
    Wondering if there is another PM MD on staff at that VA location? You mentioned the nerve block. Is this PM an Anesthesiologist? Or they were supposed to send you to another MD prior to going to PM? Although not very pleasant, a nerve block could definitely help. I'm hoping they shared with you that with RSD/CRPS, it's best (better success) to have nerve blocks sooner rather than later.

    You also mention that you had an EMG ... did they perform any other diagnostic tests like a Doppler or an ankle-brachial index (ABI). The ABI compares your blood pressure in your ankle to your blood pressure in your arms to see if there is a difference in blood flow. They would do this to rule out peripheral artery disease (PAD). Just tossing that out there, because PAD shares a few similarities with RSD/CRPS such as numbness/tingling, temperature and color changes. Maybe they discussed that with you and have already tested, because the Lyrica is prescribed for peripheral neuropathy. (typing as I think)

    I don't recall reading about or hearing anyone with RSD stating that they could not perceive temperature changes. I suppose with RSD/CRPS anything is possible.
    I know that when we're in pain, sometimes our brain has a different way of trying to process and verbalize what we're experiencing. If anything, I'm more sensitive to any temperature fluctuations. Like the bath scenario I mentioned before. One would think that a constantly cold limb would welcome hot water but perceive the water as only being warm; however, that's not necessarily the case. The nervous system is out-of-whack and the nerve endings so sensitive that, what is luke warm water to the rest of my body, my affected leg initially perceives the temp is scalding hot. Temperature regulation is wacked out completely. Exposure to cold temps makes the affected body part(s) colder. But try to isolate that freezing body part and ... gently apply a heating pad only to that area ... the skin soon heats up so much that sweat pours from that area and it feels like the tissues/bone has reached normal core temp. At other times the skin feels the heat, the brain recognizes that the dermis is hot and begins to sweat, but simultaneously perceives deep tissues/bone as cold at the same time. Hope that made sense.

    I'm glad the Lyrica is working for you a little and you're almost able to tolerate a sock. As far as trying to work yourself up to a shoe during winter ... I know that Crocs aren't fashion-forward (haha), but I find them tolerable. If you haven't already discovered them, Crocs are a brand that are extremely lightweight, fit fairly loose, and you should be able to easily slide your foot inside without tightening anything around your foot. You don't have to wear the strap around the back of your ankle - just push the strap up and over to rest on the top of the shoe. They make several different styles that are lined with fur and would provide some warmth (and at least a little protection) during the winter. If you search for fur-lined clogs you'll see quite a few brands like the Crocs, Skechers, MukLuks, Uggs. I have some lined Skechers, as well. A family member also purchased slippers for me that are lined with what feels as soft as rabbit fur (sorry I don't know the brand). The fur manages to heat my foot to a tolerable temperature. Anyway, just a few suggestions that may prepare you for the dreaded cold.

    Hope you have a relaxing Halloween and your pain isn't too frightful today!! (booooo ... I know)

    The PM was an anesthesiologist and is the only one on staff at my location, I would have to drive 300 miles to see another one. No one has discussed anything with me, my surgeon's intern fired me (I'm not sure if he knows). From what I've read my medical records, indicate alloydenia, the angeoedema, and the bone around the screws in my ankle is swolen.

    I've had a 3 phase bone scan, which showed some pooling of blood around the ankle, and a PET scan. No bone infection.

    Winter isn't that cold here, today''s high is 81. I had a pair of knock off crocs from the dollar store, but might try again with a real pair.

     
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