Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 10-28-2014, 04:29 PM #1
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Default Question on flare ups.

Greetings,

I have posted my history in other threads so won't re-post it here, for this question i'll simply state that to date (6ish months in) I haven't had anything that resembles the burning/freezing pain described by others. One question that has been on my mind and for which I haven't found any information on is if its possible to have CRPS without "flare ups"? Or maybe it would help to understand when others first had them occur in relation to getting CRPS.

Thanks for any advice
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Old 10-28-2014, 07:20 PM #2
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Originally Posted by HarryDresden View Post
Greetings,

I have posted my history in other threads so won't re-post it here, for this question i'll simply state that to date (6ish months in) I haven't had anything that resembles the burning/freezing pain described by others. One question that has been on my mind and for which I haven't found any information on is if its possible to have CRPS without "flare ups"? Or maybe it would help to understand when others first had them occur in relation to getting CRPS.

Thanks for any advice
There are many pain related symptoms associated with CRPS types I and II. Burning/Freezing pain is just one of them others are lancinating, electrical shock type, bone crushing, like a knife is being twisted in your limb, being stung or stabbed by sharp needles etc., relentlessly!! That being said pain can wax and wane although in CRPS it never goes away (with the exception of remission) and when a flare hits (not unlike the flame of a fire that suddenly burst/increases) the pain suddenly increases. A flare can last for minutes, hours, days and even become the new baseline for the daily torture that CRPS can cause.

Having a "flare" is not diagnostic of CRPS because many other things can cause someone to have a pain flare. Osteoporosis for instance, can cause pain and eventually pain flares.. as does many other things.
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Old 10-28-2014, 07:35 PM #3
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It's kind of a tough question and I don't have any sources to back up what I'm about to say...but I think flare ups just go with the territory of CRPS. Flare ups for me always involve increased pain...but they don't actually involve the burning pain (that is what I have ALL the time)...when I'm in a flare up it actually becomes a bone crushing sort of pain where I feel like my bones in that area are being ground down to dust...it's so awful.

But pain isn't the only thing that happens to me in a flare up. Swelling increases, temperature changes occur, I get dizzy/lightheaded (due to my BP going wacky...something the sympathetic nervous system controls and in a flare up it goes nuts), my balance gets bad, my hand claws up and I can't uncurl my fingers (when I get a flare in my hands)...a flare up can basically cause ANY of your symptoms to be increased. If pain isn't one of your main symptoms (you are so lucky) then a flare up could just be an increase of other symptoms you have.
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Old 10-29-2014, 03:19 PM #4
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It's kind of a tough question and I don't have any sources to back up what I'm about to say...but I think flare ups just go with the territory of CRPS. Flare ups for me always involve increased pain...but they don't actually involve the burning pain (that is what I have ALL the time)...when I'm in a flare up it actually becomes a bone crushing sort of pain where I feel like my bones in that area are being ground down to dust...it's so awful.

But pain isn't the only thing that happens to me in a flare up. Swelling increases, temperature changes occur, I get dizzy/lightheaded (due to my BP going wacky...something the sympathetic nervous system controls and in a flare up it goes nuts), my balance gets bad, my hand claws up and I can't uncurl my fingers (when I get a flare in my hands)...a flare up can basically cause ANY of your symptoms to be increased. If pain isn't one of your main symptoms (you are so lucky) then a flare up could just be an increase of other symptoms you have.
Thanks Catra, this makes sense. If I consider a flare to be any increase in symptoms, then I get them daily around 7 and they leave around 9 and it comes in the form of a slight increase in warmth. I suppose I could just avoid this time of the day...
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Old 10-29-2014, 03:24 PM #5
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There are many pain related symptoms associated with CRPS types I and II. Burning/Freezing pain is just one of them others are lancinating, electrical shock type, bone crushing, like a knife is being twisted in your limb, being stung or stabbed by sharp needles etc., relentlessly!! That being said pain can wax and wane although in CRPS it never goes away (with the exception of remission) and when a flare hits (not unlike the flame of a fire that suddenly burst/increases) the pain suddenly increases. A flare can last for minutes, hours, days and even become the new baseline for the daily torture that CRPS can cause.

Having a "flare" is not diagnostic of CRPS because many other things can cause someone to have a pain flare. Osteoporosis for instance, can cause pain and eventually pain flares.. as does many other things.
Thanks Zoo,

it's very interesting that osteoporosis can cause flares. My X-rays, just a month back) showed osteopania and it might still persist, though given my diet and weight lifting i doubt it played a role in the injury, it might be playing a role in my current symptoms. I'm still at about 40% ROM in my toes so at least i have something to work on that might help.
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Old 10-29-2014, 06:21 PM #6
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Thanks Zoo,

it's very interesting that osteoporosis can cause flares. My X-rays, just a month back) showed osteopania and it might still persist, though given my diet and weight lifting i doubt it played a role in the injury, it might be playing a role in my current symptoms. I'm still at about 40% ROM in my toes so at least i have something to work on that might help.
I think perhaps you misunderstood my mention of osteoporosis and pain flares. It was just an example. Anything that causes pain like arthritis, chrohns disease, CRPS, IBS etc., that have a base line of what would be considered tolerable or normal pain levels that suddenly increase with or without a trigger is considered a pain flare or even a symptom flare. The reason I used osteoporosis as an example in your case was simply because previously you mentioned being positive for osteopenia which can contribute to pain, more prone to bone fractures and if it continues or progresses into osteoporosis then yes pain is likely. In your shoes I wouldn't say it didn't play a role in your fracture(s) since having osteopenia at your age especially considering you do lift weights and eat healthy this particular diagnosis (osteopenia) should be further investigated. As I mentioned in a previous post to you it is highly unlikely that the osteopenia was caused by CRPS given your symptoms and reduced pain levels since injury. In your shoes I would seek out an internal medicine doctor who can do a complete workup of your blood, endocrine etc., that would explain osteopenia at your age & fitness level.

As far as ROM goes it is not uncommon to have reduced ROM for even up to 2 years after a fracture. I would think that for the toes this could be longer since the normal ROM is quite small and they really aren't doing big movements throughout the day. My most recent fracture of my ankle was just this past July and I've only gotten about 50% ROM back at this point also and pain is still there with certain movements but nothing like the pain I feel in my legs from CRPS. It is pain from stiffness/swelling and stretched tendons/ligaments. I know this to be true because the pain improves with resting and elevation and worsens with use. CRPS pain does not improve with rest, elevation or anything else for that matter.. it is there the minute you open your eyes until the minute I manage to fall asleep - at least this is the way it is for me.

As long as your pain is improving or stays in the low levels and the bone is healing I would continue to remain positive and be patient with your healing.

** I see in another post that you mentioned you do get increased pain at the same time everyday? Is this in the morning or night and what are you doing before this increase in pain?
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Old 10-29-2014, 06:33 PM #7
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Oh...if only we could just fast forward through the worst parts of the day...lol!

One thing I found very helpful was keeping a journal of my symptoms, when they increased, when they decreased, etc. It helped me zero in on what was triggering the pain flare ups. Maybe there's something that happens at that time of night (temps drop), maybe there's a particular activity you do around then, maybe that's just what time your body reaches it's limit of activity, etc. You can start to see patterns and then start to make changes to your daily activities to minimize the flare ups.
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Old 10-29-2014, 10:50 PM #8
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Quote:
Originally Posted by zookester View Post
I think perhaps you misunderstood my mention of osteoporosis and pain flares. It was just an example. Anything that causes pain like arthritis, chrohns disease, CRPS, IBS etc., that have a base line of what would be considered tolerable or normal pain levels that suddenly increase with or without a trigger is considered a pain flare or even a symptom flare. The reason I used osteoporosis as an example in your case was simply because previously you mentioned being positive for osteopenia which can contribute to pain, more prone to bone fractures and if it continues or progresses into osteoporosis then yes pain is likely. In your shoes I wouldn't say it didn't play a role in your fracture(s) since having osteopenia at your age especially considering you do lift weights and eat healthy this particular diagnosis (osteopenia) should be further investigated. As I mentioned in a previous post to you it is highly unlikely that the osteopenia was caused by CRPS given your symptoms and reduced pain levels since injury. In your shoes I would seek out an internal medicine doctor who can do a complete workup of your blood, endocrine etc., that would explain osteopenia at your age & fitness level.

As far as ROM goes it is not uncommon to have reduced ROM for even up to 2 years after a fracture. I would think that for the toes this could be longer since the normal ROM is quite small and they really aren't doing big movements throughout the day. My most recent fracture of my ankle was just this past July and I've only gotten about 50% ROM back at this point also and pain is still there with certain movements but nothing like the pain I feel in my legs from CRPS. It is pain from stiffness/swelling and stretched tendons/ligaments. I know this to be true because the pain improves with resting and elevation and worsens with use. CRPS pain does not improve with rest, elevation or anything else for that matter.. it is there the minute you open your eyes until the minute I manage to fall asleep - at least this is the way it is for me.

As long as your pain is improving or stays in the low levels and the bone is healing I would continue to remain positive and be patient with your healing.

** I see in another post that you mentioned you do get increased pain at the same time everyday? Is this in the morning or night and what are you doing before this increase in pain?

Thanks a lot zookester,

The osteopenia showed up around month 3 in the toes,your 100% right i should explore this with my doctors so i understand what might have caused it. I see some literature relating stage 1 CRPS with patchy bone loss, but its unclear what the cause effect is.

I hope it doesn't take 2 years to restore ROM, but i wouldn't be surprised.

Quote:
I see in another post that you mentioned you do get increased pain at the same time everyday? Is this in the morning or night and what are you doing before this increase in pain?
My Symptoms: warmth, redness, odd twinges, small electric shocks. The foot often feels sore to walk on, but I feel this could easily be part of the recovery process. These are the symptoms and pain level that I have had for the last month or so.

My symptoms seem to increase as the day goes on. Starting with no symptoms (0 pain) in the morning and increasing tell around 7-9pm (2 pain). Around 7-9 their seems to be a slight boost in symptoms. Which then fades around 10-11 (1 pain).

Symptoms increasing/decreasing don't seem to be correlate with how much i exercised that day. Squatting plus a mile of walking resulted in less pain then days when I only do mild walking.

Driving (pressing the petal) seems to be the most uncomfortable activity.
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Old 10-29-2014, 11:29 PM #9
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Thanks a lot zookester,

The osteopenia showed up around month 3 in the toes,your 100% right i should explore this with my doctors so i understand what might have caused it. I see some literature relating stage 1 CRPS with patchy bone loss, but its unclear what the cause effect is.

I hope it doesn't take 2 years to restore ROM, but i wouldn't be surprised.



My Symptoms: warmth, redness, odd twinges, small electric shocks. The foot often feels sore to walk on, but I feel this could easily be part of the recovery process. These are the symptoms and pain level that I have had for the last month or so.

My symptoms seem to increase as the day goes on. Starting with no symptoms (0 pain) in the morning and increasing tell around 7-9pm (2 pain). Around 7-9 their seems to be a slight boost in symptoms. Which then fades around 10-11 (1 pain).

Symptoms increasing/decreasing don't seem to be correlate with how much i exercised that day. Squatting plus a mile of walking resulted in less pain then days when I only do mild walking.

Driving (pressing the petal) seems to be the most uncomfortable activity.
Regarding the osteopenia showing up at month 3 - unless you had a base line prior to month 3 there would be know reason to believe that this was caused from CRPS. Osteopenia in CRPS is usually a much later stage of disease process or in those with a severe case in which by your history this is not the case for you - so I do hope you get it checked out.

Your symptoms above sound more like the healing process - it would not be uncommon for pain to increase in the morning after sleeping as this is when inflammation and stiffness occur due to disuse while sleeping it is also a common symptom as an inflammatory response to the normal healing process, as is the increase in warmth and even twinges of nerve pain.

It also makes total sense the the most uncomfortable thing for you is the driving as this would be when you would utilize the small bones (toes) the most. Have you ever used a 'balance board' for therapy? It is often utilized for ankle sprain/brakes but,I would bet it would be good for you for your toes as well.

Lastly, regarding ROM in your toes - there are many worse body parts to have reduced ROM .. keep up with your fitness routine and don't forget to massage your foot (especially the toes) to facilitate healing and brake up any scar tissue that is forming. Massage + epsom salt soaks + physical therapy = speedy healing and if it truly turns out to be CRPS then all these things will have helped you already.

Last edited by zookester; 10-30-2014 at 07:49 AM.
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Old 10-30-2014, 03:45 PM #10
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Regarding the osteopenia showing up at month 3 - unless you had a base line prior to month 3 there would be know reason to believe that this was caused from CRPS. Osteopenia in CRPS is usually a much later stage of disease process or in those with a severe case in which by your history this is not the case for you - so I do hope you get it checked out.
Will do!

Quote:
Your symptoms above sound more like the healing process - it would not be uncommon for pain to increase in the morning after sleeping as this is when inflammation and stiffness occur due to disuse while sleeping it is also a common symptom as an inflammatory response to the normal healing process, as is the increase in warmth and even twinges of nerve pain.
My pain is at its lowest after I wake up (usually no symptoms), it usually increases slightly throughout the day.

Quote:
It also makes total sense the the most uncomfortable thing for you is the driving as this would be when you would utilize the small bones (toes) the most. Have you ever used a 'balance board' for therapy? It is often utilized for ankle sprain/brakes but,I would bet it would be good for you for your toes as well.
Yes actual! I used one in therapy the very day you posted this.

Quote:
Lastly, regarding ROM in your toes - there are many worse body parts to have reduced ROM .. keep up with your fitness routine and don't forget to massage your foot (especially the toes) to facilitate healing and brake up any scar tissue that is forming. Massage + epsom salt soaks + physical therapy = speedy healing and if it truly turns out to be CRPS then all these things will have helped you already.
Ok, the only thing I haven't tried is the epsom salt soaks. I'll have to look into it, I thought they were for de-sensitizing the area to reduce pain. Do they offer some healing benefit?
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