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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


[QUOTE=FunFact;5437606]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![/QUOTE]


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.
[QUOTE=3DMommy;5437737] 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.[/QUOTE]

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 [I]initially[/I] 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) :jester:
[QUOTE=FunFact;5437940]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 [I]initially[/I] 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) :jester:[/QUOTE]


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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