Check this out, Hypothermia in our limbs?
 

Hi everyone, My pain management doctor put those temperature tapes on my legs last month during my appointment, I think I mentioned it. He freaked out when he saw the results. I was actually surprised they were not colder as they hurt so badly - to me as they were freezing as usual. He said the temp of 93 degrees farenheit was shocking. So I looked it up this am and now I know why he was so upset. this is a quote from the hypothermia website.
"Our temperatures drop too far when they dip into hypothermic internal temperatures of 95 degrees and lower." Since my leg was at 93, its no wonder we all are in so much limb pain and I why I feel like I have freezer burn , I do. Lol.

Just thought you might find this interesting. He used the stips you take childrens temperatue with. cz

I keep extra clothing on the affected areas. Usually when I'm active just a wrap on my hand is enough but I also wear a sock with the toe and heal cut out, an elbow brace, and a pajama top with everything cut away except the left sleeve. It seems to fool the body into keeping everything the same temperature but it isn't always effective.

To me that "freezer burn" just feels like dead meat; highly ennervated meat but dead just the same. This sensation isn't that common unless I've been overdoing it.

This is interesting thanks for sharing.

I have hot RSD/CRPS. My legs feel like you could melt butter on them they get so hot.
In the winter I never need a heavy coat. The cold temperature makes the burning feel better but it doesn't help the deep throbbing pain in my limbs.
My poor husband is always freezing. I keep the air low in the summer and heat just as low in the winter. My daughter wears sweat shirts in the house all year round when she's home.

It's interesting how this beast affects each of us so differently. Thus the reason for no cure.

SB, that is why I typically will mention "hot" and "cold" rsd when it comes to people talking about ice or how to make something feel better. Us "cold" people are some hurtin' puppies with cold, but of course "hot" isn't bothered by ice or cold and is perfectly fine for you because you're not restricting already constricted blood vessels like mine are being a "cold" rsd. :-)

This is very true because even everyone with cold or hot rsd have different experiences somewhat because we are all individuals. So it will remain.

Hugs,

Karen

Hi CZZ74, Thank you for the information. Sorry you have much cold pain. I alternate between Hot and Cold.

Does anyone ever have like trickling water running in their legs. I actually will take my hand and feel for running water down my leg, thinking I've had an accident of something. But it's always dry-just feels like running water down my leg? Anyone experience this, I would appreciate knowing, Thanks, loretta soft hugs:hug:

This may be similar. I often have the sensation that my sock is totally wet. I almost expect to see pools of blood pouring out when I remove my shoe. Of course, like you, it is always dry.

Regarding the thermometer test: When I was first diagnosed in the eighties, those temperature strips were either non-existent or not very accurate. The doctor used a thermal imaging camera to photograph the heat coming from my skin. (My only nude posing has been in doctor offices. Good thing, too! No one else would be interested. LOL :D) The result was similar to what you will see with a weather satellite showing approaching hurricanes, etc. That was rather expensive (denied by insurance, of course) so I am glad they now have a cheaper and faster way to do the same thing.

Mike

Mike thats so funny
 

Mike that was so funny, yes to date, the nude posing, on three different occasions now for the thermograph has been my only occassion too! awful wasnt it. I do am contanstly feeling a wet area somewhere on my body and am shocked to find out it is indeed "dry", mine might be on my back, leg or abdomen. thank you for posting that. cz

Yes and it is so odd
 

Loretta, you described this feelilng well. I have such a diffucult time trying to explain this sensation the one you are describing here and Mike below. i will be convincied that there is a rivulet runnning down byleg or back,two of my worst areas, and nothing, absolutely nothing. It si so bizarre. thanks , cz

The extra clothing,
 

Hi Ima, the extra clothing I too still have to wear cutouts even though I am way past most of the early alloydian, I still can not stand to have bands around my ankels and knees, etc. also where I had my port. May I ask how long you have had rsd, Iam wondering when we can stop cutting up our clothes, thanks cz

Are those with hot RSD still experiencing vascoconstriction?
 

Hi Karen, since I have cold rsd, and the vascoconstrition is very obvious my question is If you ahve hot RSD isnt the same thing happening to you, vascoconstriction, as it is with me? your body is just reacting differently? In the begining my legs were red hot, as the stages advanced they went cold, but the underlying problem was always vascocontrition. So is it the same. sorry for my awful spelling. cz

cold RSD: vasoconstriction
hot RSD: vasodilation

Hey Karen,

It's good to see your back on the boards. Your logic makes sense and I understand what you are saying. Cold RSD never can get warm Hot RSD can never get hot enough. For me I just keep burning and burning. Today for example I am on the 3rd day of a full body flare. Even the neves in my face and mouth are flared. At dinner I held my ice tea in my mouth for few seconds before swallowing it to help cool the burning nevers in my mouth to my throat it felt like hot tea. My entire body head to toe is on fire I have increased my meds like I normally do and it isn't helping (yet). To look at me I look like I laid on the beach all day and have a sever sunburn (it's almost 10PM).

Be it hot or cold RSD neither is enjoyable.
Take care,
Sherrie

I have cold rsd too. Here's an explanation between the hot and cold. They aren't the same thing at all. One, cold, is vasoconstriction. Hot is vasodilation because there's too much blood flowing through the blood vessels, versus cold where there is a lack of blood flow.

Here's a link that explains it as well, Heat/Cold Adaptation. It says what the quote above says. "Red skin indicates vasodilation and the pooling of blood near the surface for release of heat."

Hope this helps clear it up. :-) Some people start off with hot rsd and it gradually changes to cold, but cold usually stays cold and sometimes people can have both at the same time.

Hugs,

Karen

Exactly! :-) Holy cow....sunburned without the sun touching your skin. You're right, it all sucks!

Hugs,

Karen

thank you for the correction.
 

Karen, hi, im so surprized that we would have both components through the duration of rsd- that it can be so extreme in the spectrums. I was incorrect, I thought that whether hot or cold, we both suffered from vacoconstrition. I thought it just changed with the life cycle of rsd. I went through the heat in the early stages. Now with the cold, I still have excessive sweating its a huge problem requiring potassium replacment reguarly, I really try to watch it as nothing burns more than an IV of potassium. do we both have the blood pooling, I understand that our nerve cells literally leek blood. I have had lesions that look like blood blisters, so so painful. If i knew how to post pictures i would show you. Dr. S has told me that our edema is different, its in the nerve cells or rather its the nerve cells holding the fluid and leaking the fluid. the blood goes down to my extremeties but does not return,as my body considers them as lost cause. it still seems so odd to me that the disorder is on both ends of the spectrum vasoconstriction and vasodilation..and I agree we may have them both at the same time in different parts of our body. thank you for you post, hoping you have a good day, cz

Marleen,

Thank you, that is very succinct. From here, we can picture:

vasoconstriction (constrict - Verb: to draw or press in; cause to contract or shrink; compress) -- smaller blood vessels, less flow

vasodilation (dilate - Verb: to make wider or larger; cause to expand) -- large, open vessels, more flow

Mike

I was told at one time that the vasodilation/vasoconstriction that occurs in RSD has to do with the tiny nerves on blood vessels. The nerves make it possible for a blood vessel to react, to either constrict or to open up automatically under cold or warmer circumstances - it's a very finetuned system that can instantaneously react. The RSD makes these nerves act totally out of control. That's why you get constantly opened up blood vessels in first stage RSD, then the nerves sort of don't know what to do anymore in stage 2 and they start to vary between constriction and dilation, then in stage 3 it goes the other way and they cannot keep the blood vessels open enough anymore. That's why in late stage RSD often vasodilators are given as meds, to make the blood vessels open up more, to allow for more blood flow and to warm up the limb from the inside out.

Hi Sherrie,
I am so sorry you are in a full body flare. I know how miserable that is. Please know many of us are thinking of you and hope it doesn't last long. I just finished a long flu, making the body miserable. Even 10 days of super strong antibiocs didn't end it. Must have been pnemonia.
I live in Arizona and it's been an extra hot summer. Still about 104. Looking forward to some cooler weather. We were formerly from Oregon. In my 14th year,now full body. Have a great Dr. Am going to try his new HBOT in his new clinics. Please take care, loretta soft hugs:grouphug:

Glad to help you with understanding the difference. I hadn't seen Marleen's post or Sherri's before I post it. lol Those who start cold stay cold, those who start hot may, like you did, turn cold eventually. That "used to be" the criteria for rsd. Skin was hot first and cold later, which isn't true for everyone and I found most people have cold rsd and hot rsd is a minority. I'd have to dig up the stats on my survey again for the %'s.

Sweating, blood pressure problems and such are all due to the rsd wreaking havoc with both voluntary and involuntary systems. We can't regulate our body temperature anymore and get cold or hot when we shouldn't be. I only deal with some sweating at night that is mild but get worse at "that" time of the month. lol I think part of the reason for my lack of sweating as some do is because I'm very underweight now. I know it's hormones making the sweating worse at night near my period. Potassium burns you, seriously? Wow, I've never heard anyone who experienced that...interesting.

Maybe not so much blood pooling...it's the lack of blood flow that causes skin color change for me, but I think it's the excess blood flow, blood pooling in hot rsd though. I have blood blisters, known as petechial hemorrhages, all over my body, have since the beginning that turn into lesions. Even tiny ones take forever to heal. I thought I read somewhere what causes it but can't remember where or when! LOL

Hugs,

Karen

Some people actually move more slowly or even faster through the stages but it's also possible to skip a stage. It also largely depends on treatments given and how you react to them. That's why RSD is so different for everyone.

We are just discussing this on the PN forum.

I am going to try it too, since winter is almost here.

http://healthifeet.com/

This might help those who struggle with "cold" and poor circulation.

The l-arginine and magnesium in it are known vasodilators. But I cannot endorse it yet. I just thought I'd put it up here for those wanting a non-invasive thing to help with comfort.

Here is an edit... I am finding different ingredients listed on various websites today for this product... but it appears that capsaicin is in it.
For those who cannot tolerate pepper extract...which may cause burning, then this is not for those patients.
Here is our thread:
http://neurotalk.psychcentral.com/thread102849.html

This one has arginine with NO capsicum (pepper).
http://www.butaicosmetics.com/en/foot_cream.aspx

No Biofreeze for cold rsd
 

Hi thanks for this, I went to PN and read the thread, I did want to mention that biofreeze is a big NO for my cold rsd, the initial "cold" feeling it creates is unbearable for me. It really increases my pain.the capsaican may be different?

PNers mostly have burning symptoms, or numbness.

So the Biofreeze is good for that. My major symptom is burning too. Biofreeze has menthol in it which activates the cold sensing nerves, which overrides the burning signals.

I find capsaicin horrible...many of us (PNers) cannot tolerate it.
It was hard to find in the ingredient list of Healthifeet because it is abbreviated.

I believe the website has a free trial sample. I think that would be the way to go with it.

Arginine can be used orally, and there are magnesium creams available too.
example:
http://www.kirkmanlabs.com/ViewProdu...ct_ID@124.aspx

Arginine is included in erectile OTC products for men, because it dilates blood vessels. It might help with RSD vasoconstriction, but that would be an "experiment" you'd have to be willing to try it orally. It is also available in a powder called ArginAid. I've seen it used for patients in long term care who have resistant healing of bed sores, etc.
http://www1.mooremedical.com/index.c...tail&PID=13004

Taking too much arginine orally however, may set off shingles.
Arginine is a viral stimulant, for replication. L-lysine is the balancing amino acid for that complication.

So I like the idea of a cream. I'll keep looking for one without that pepper extract.

Hi Mrs. D.
I hope this doesn't sound stupid but could you tell me the difference between hot and cold RSD. I have had RSD for about a year now and my doctor never mention either or to me.
Thanks,
hopeful::)

I cannot help you there, hopeful in the way I could if I had RSD.

RSD seems to have a mixed presentation of vascular and nerve problems. Some patients may have more of one type than the other.

PNers typically only have nerve damage. Either the sensory endings or the axons may show damage or death.

Both RSD and PN develop a central pain issue, where areas of the brain get hardwired into pain perception. Sort of like phantom limb phenomenon in amputees.

With PN...there are hot and cold sensory fibers in the feet and hands, which then start to fire too much or too little.
For some reason burning sensations are more common with PN. That is why menthol works well for us.

With RSD, you may have circulatory changes, hence the color changes that accompany pain. With decreased blood flow, you can then damage the sensory nerve endings.

And I think that some patients may have BOTH conditions.

The people here who report COLD intolerance, lower limb temperature may find the Healthifeet product helpful. There are thermo photos on that website to show improved circulation.
But for people who have burning pain... the pepper extract in this product may increase burning sensations.

I think RSD is a combination disorder. There might be an inflammatory cascade from the original injury that travels around and affects the blood vessels, and the resulting lack of oxygen and build up of toxins, then damage sensory nerve endings.

This is why some studies show calcium channel blockers and adrenergic blockers helpful early in the disorder. It appears to me that RSD is very complex, and this is why it is hard to understand and why doctors seem so clueless about it.
There is an analogy coming forward now about multiple sclerosis. The new thinking is that it is a two fold disorder, with inflammation at the beginning, followed by damage from another mechanism as time passes. So as the understanding of the disease progression increases, then perhaps treatments can be better applied as well.

And I think this is why some people who start with PN, may eventually end up with RSD as well.
And the reverse. RSD patients can develop diabetes, and have diabetic PN, or can be poisoned and have nerve damage that way. One needs to keep an open mind about this disorder, since other things can happen to you that are independent of the RSD itself. There is also new evidence coming out about Fibromyagia and peripheral trauma. So it is likely some RSD patients may have Fibro as well. Fibro overlaps with PN too.

Thanks for the info mrs D. I think I have a combo of both RSD and PN. I had a postive small nerve skin biopsy before I was diagnosed with RSD. I have terrible burning that drives me crazy. I am going to try the biofreeze and see how that works.
Hopeful:)

You are so right,
Soon after my injury I developed a redened hot RSD limb.. but I would say within a month my right ankle was cold and blue, RSD spread to both legs and they were ice cold.

After 14 lumbar sympathetic nerve blocks I was left with what my anesthesiologist called a virtual sympathectomy from too many blocks.. this created a temporary HOT RSD that has after 3-4 years reverted to as cold again sometimes as it was before the blocks.

My RSD spread full body and I can say that all areas cool and heat on their own particular whim which makes no sence (one arm warm, one cold,etc).

Whoa.. Biofreeze and RSD, I would do my research first.
Don't get me wrong I know nothing about this procedure but the name itself tells me go very cautiously please Hopeful.

Ice and cold are very bad for RSD!
:eek:

Sandra

Since this thread mentions l-arginine... I found this yesterday on the net:

http://www.drignarro.com/notestimonials.php

http://www.drignarro.com/press.php

His claim is that using l-arginine and l-citruline can increase nitric oxide in blood vessels, and lead to improved circulation, and less oxidative damage. (his mixture has also lowered blood pressure).
Here is an independent paper on this subject:
http://www.pubmedcentral.nih.gov/art...?artid=2291275

And to Sandra--- Biofreeze is not "cold". It is a gel with Ilex in it and menthol. It reduces burning sensations from nerves in the periphery. It is commonly used in physical therapy which is where I found it. Some therapists mix it 1/2 and 1/2 with the ultrasound lubricant, when the ultrasound treatments are done.
Ilex is an herb also called Yerba Mate, which is a tea from S. America, used there more than coffee socially. It is very high in antioxidant value, and I believe it is really the most important ingredient in Biofreeze. Our FDA however, makes them list it as an inert ingredient, because of the "rules" of drug claims we have here.

Patients with cold intolerance RSD may not like the cool feeling. But I don't believe the gel itself changes any temperature in the skin. Biofreeze is more likely to be acceptable to those with hot burning RSD...which more resembles PN. Many of us PNers find it very comforting when nothing else will stop burning that goes on all night!

Last time I had my temps checked my RSD foot was in the lower 60's. They were very surprised.