hi, hope everyone is as well as can be....

my new doc has mentioned crps to me but i dont have burning pain - i posted a week or so ago as i have had previous pain cons and physio say tos and a new dr say crps.


i have no burning pain or sensitivity to touch - is it possible to have crps without either of these characteristics?

Tracey
x

Tracey,

I do not know very much about TOS, but will make this generalization about RSD.

After reading postings on this site for a while and reading as much as I can from other sources. it is clear that there are no 100% all-of-the-time symptoms. That is one of the frustrating parts about RSD and why many doctors do not recognize it. One person's set of symptoms may be totally different from the next person's.

So yes, I believe it is possible to have RSD without the burning. In my case, the burning comes and goes, as do a lot of the other symptoms.

I hope you can get some good treatment from your new doctor.

Mike

For me, I didn't have burning or sensitivity to touch but I most definitely had rsd!! I had sensitivity to air across my skin only back then, now I have both. I had rsd for between 4 and 6 months I think it was before I felt my first burn. Even now, going on 6 yrs later I rarely feel any burning at all. I feel it but very infrequently and not for long. For that I am so very grateful!!! I know so many who burn so bad almost all the time and I feel bad for them.

Hope this helps

Hugs,

Karen

Hi Tracey

If I may be so bold - I think you need to push both doctors to try and get a more definitive diagnosis one way or another. It is possible to have CRPS without the typical presentation of neuropathic pain as a burning pain. It is much less common - if, for example, you look at the Professional Treatment Guidelines that are in place in the Netherlands, they reviewed what evidence is available on CRPS and estimate that only a very small percentage of CRPS cases are estimated to be what they call "cold". I fall into that category. I have a definitive CRPS diagnosis - there is no doubt about that, but I have the deep, cold aching form of neuropathic pain. I have had the odd experience of hot burning pain over the 13.5 months that I have CRPS but it has generally been much less strong or intense than the cold pain and typically fairly short lived. I live with the aching, cold pain all of the time and have the same sort of drug treatments as would be used for the burning pain.

Apparently, the evidence available to the professional team who worked up the Dutch Protocols is that the "cold" form carries a higher risk of spread or "new" CRPS symptoms appearing in a different part of the body following a subsequent injury or trauma so it is worth being aware of this.

There are some pretty comprehensive and strict diagnostic protocols for CRPS which are designed to minimise the risk or under or over diagnosis and you might want to look at these or get your doctors to review and test you in accordance with those. If you go to the RSDSA website you can access the treatment guidelines there and they have the tables and diagnostic criteria all set out with reference to the relevant international conferences where they were discussed/amended etc. You can also access the English version of the Dutch documentation (both patient and professional versions) from their site. You have to display a certain number of symptoms and signs in various categories to have a CRPS diagnosis and they have been worked up taking into account the fact that symptoms can vary from person to person and that there is no single, definitive test for CRPS.

Hope that helps - take control of your care and get hold of as much reliable and good, detailed information as you can so that you are able to let your docs see that you are well informed.

I also have the cold type, without burning pain or sensitivity to touch, but cold air bothers me. I get a deep bone ache and muscle pain, too.

Ditto for me. No sensitivity to touch, but intense sensitivity to compression - even when no compression is objectively present - deep "bone crushing pain," a sense that someone is working over my toes with the business end of a hammer and nasty cramping throughout my body, but in particularly my legs. "Cosmetic" issues include changes in nail growth, redness in both feet sometimes late at might (but that took a couple of years to come on) and most recently edema in both ankles which is mostly controlled with oral diuretics: 20 mg. Lasix/ 1 x day. Also significant loss of pin-prick sensitivity indicating what's called small fiber neuropathy.

Hope this is useful.

I also have the cold type and that is no fun either. I have had rsd for 6 yrs now and i think it has started to spread into my right hand and shoulder(beings it started in my left hand and progressed into my shoulder). I have not been diagnose with it on my right side but they are the same feelings I got when I started with it in the left side. I have lost almost all of my feeling in my left hand. The doc told me that I basically have no feeling or if you want to get technical sensory function in my left hand. That sucks too because that is my dominant hand. I was just in to get my scs reprogrammed yesterday because of all the spasms I was getting and now I try to deal with it, but if I move just right and even when I was trying to sleep last night I had my spasms back again. I was told by one of the medtronic ladies that was there yesterday that since they put stimulation in my shoulder they may have hit the brachial nerve just right to cause the spasms. Now they have it programmed in just above my elbow and I am still getting spasms even when I turn it down. Does the brachial nerve run clear down your arm or is it just in your shoulder? I can't stand this it just drives me crazy. I either have the scs to help control some of the pain or I deal with more pain without the scs. Either way I can't win cuz I still deal with pain even with the scs just not as much. Is there anyway they can control the pain any better?
Sorry I got off the subject,but I guess the sooner you catch the disease the better chances you have to put it in remission. Hopefully you all agree with me. That is what my pain doc told me anyway.
Take care and hope you get the answers and relief you need. Do us all one favor and keep in touch with us for we are a very caring community. Lots of luck!

Sincerely,
Screwballpookie

I don't have the touch sensitivity or the burning. But if I try to hold a cold can of soda in the hand on my bad side, it will burn as if it is hot. My hand on that side used to get icy cold and I had to wear a glove much of the year. The skin turns various shades of red to red-purple. It's much worse in winter. But, the RSD is centered in my shoulder on that side - I have no real pain in my hand. I do have grooved nails, and shiny skin though - but the shininess only happens when it is also red. At other times it looks fairly normal, although it always looks a bit swollen. Sometimes a LOT swollen, but always a little. I think it's odd that the signs show up in areas I have no pain.

Even though I have no pain in my arm, and my worst pain is in my shoulder and upper back and neck.... my entire arm feels like it is in a huge, arm size blood pressure cuff that is 3/4 pumped up. It is the worst pressure feeling. When a storm is coming in and the barometric pressure drops, it feels like that blood pressure cuff is really really tight.

The only sign that shows on my shoulder where the pain is bad is that 4 years later, it's swollen, and a bit oddly shaped from it being half frozen up all these years, and I had a lot more hair on it for a while - but now there is no hair on it. Sometimes the muscle spasms are so bad, you can see them.

The redness and coldness in my hand have been helped a LOT by taking novasc every 12 hours. I think it's 5mg. I also take Avapro. I guess it's a good thing I have high blood pressure, since those meds seem to help some of the symptoms of RSD. I tried the one that is a patch, is it Catapress ( you can tell I take Topamax! LOL) but the norvasc helps a lot more. Since switching to norvasc, I don't wear a glove nearly as much, and the swelling and color changes are a lot less.

I also have RSD in my feet. RSD started in 2001 when I broke my right foot. I had many signs of it back then, but several doctors said it couldn't be it because it wasn't hot to the touch, it was cold, and I wasn't sensitive to light touch. They didn't know about Cold RSD. The only sign of it there now is pain. It still feels like I am walking on two broken bones. This past winter, I had two stress fractures in my left foot - probably from favoring my right foot for all these years. They say the fractures have healed - but it still feels like those bones are broken too - and the nails are ridged and crumbling, so I think RSD is in that foot now too. Good news is that now both feet feel the same, so I no longer limp.

I went to a really great Dr. at Cleveland Clinic - not Dr. Stanton Hicks, but a woman who worked with him for years. She now runs the pain clinic at a hospital in a suburb of Cleveland - but still part of the Cleveland Clinic. She still works with S-Hicks and RSD. She said that in the next 20 years she thought they would define many different types of RSD. If I remember correctly, I think she said more they think there will be more than 10 kinds. I wish my insurance still covered her. She was the most knowledgeable doctor I have gone to about RSD.

I also don't have sensitivity to touch or burning pain and I think that is why the ketamine infusion didnt work for me. I do have stinging in feet and hands, a foot that gets cold and most of my body feels like it has no padding- the muscle around both elbows is wasting away , my arms are weak and now it is going into my back. No matter how you look at it it stinks. Some docs dont think I have RSD but I know I do! I really dont go to many docs anymore because I always feel like I have to prove something. I am now trying HBOT and hoping it will start working soon!!

Take care

Deb

with me, I do have a lot of burning pain and sensitivity to touch, air, breathing, wind, water, and anything else that even THINKS of getting close to my foot... However, I also have RSD in my calves and there I don't have sensitivity but do have crushing pain (I liked the sledge-hamemer to the toes image--it sure feels that way, but in my calves!) and feels like the only way to get relief sometimes is if i were to peel the mucles off the bones (sorry, grusome image, but it does strangely feel like it'd help!), or amputate. None that I'm going to do, but that's the charactersitic of the pain. Weather changes percipitate a lot of the worsening in calf pain and other rsd pain. annie