My pcp just diagnosed me with RSD. This comes 4 months after having surgery for bi-lateral TOS. My left is worse than the right, and my face is particularily affected. My pcp said that all that can be done for me is already being done. I am already on the medications that he uses to treat RSD.
He did tell me to talk to my surgeon about it, and let him know about his RSD diagnosis.
My question is this. Should I wait until I see him again in two months, or should I phone his office and ask the receptionist to relay a message to him that this has occured?
At this moment the burning is tolerable, it is as though I have a bad sunburn, particularily on my eyelids. The swelling, and the burning in my arms and neck comes and goes. It is certainly not constant. My eyeliods are the only things that are consistently burning.
Any advice would be appreciated.
Tracy

CALL NOW! The biggest thing with RSD is immediate treatment. The earlier you are treated, the better chance you have of either stopping the spread, or minimalizing the symptoms. In two months, it could VERY WELL be too late to do much about it. Especially wiht the way doctors pussyfoot around the dx, and how they don't want to act quickly. Your best chance of getting this "in check" is within the first 3 months. CALL NOW.

I second what LisaM says! Call your Dr. NOW!!!

Have you had any blocks. You might want to call the surgeon and ask him to recomend an Anesteologist or PM Dr. to do blocks on you. If your surgeon is not familiar with RSD you need to find a Pain Management Dr. Don't wait at all to start getting treatment for it.

Ada

Go to the DR. NOW!!!! I agree go the you surgeon. It was the same for me, but my surgeon did get me in touch with the dr. who dx me and started treatment right away.

Annick

Hi trix,

You describe the pain of a sunburn, which suggests you are still in the inflammatory stage of this disease.

In my reply on Artist's thread; Applied Neurology February Edition, I talk about research that shows the use of antioxidants during the inflammatory stage significantly increases chances of complete remission; but do not help in chronic, hypoxic RSD.

I urge you to begin taking antioxidants now (grape seed extract and pycnogonel are easily found at many drug stores and most health food supplement stores).

I would also urge you to apply DMSO to skin that burns with sunburn (inflammatory) pain. It now comes mixed with creams that makes it less harsh to the skin, and the old garlic odor is completely gone.

Antioxidants don't guarantee remission during the inflammatory stage, but I believe your chances will be significantly better if you use them...Vic

Hi shelley,

I began taking grape seed extract (GSE) after I was persuaded that RSD is more likely an ischemia reperfusion injury (IRI) than the result of nerve damage; my decision to begin taking an oral antioxidant is based on research showing that simply applying vitamin E (an antioxidant) to a surgical wound prevented most IRIs.

(I will talk about this in the series of posts I plan to use to describe IRI in bite-size pieces).

As you have seen in my HBO posts, I'm very conservative about taking meds, so I started with 100mg of GSE daily. I noticed that about once a month I would feel (and see) inflammation on the tender skin on the inside of my left wrist. I would apply DMSO to the skin and the inflammation would subside after a couple days. When I increased the GSE to 300mg daily, the inflammation never returned.

(DMSO is a topical antioxidant, and probably only effective when the skin is inflammed. It should not be used to block inflammation under normal circumstances, as it is part of the immune response to pathogens such as viruses and infections, but if you suspect symptom migration, applying it to the skin 3X daily does help.

I guess I'll see if I'm bending a rule here: DMSO comes mixed with a cream, making it less harsh on the skin, and the best way to find a store is to call the manufacturer at 1-800-367-6935. Give them your zip code and they will tell you the location of the closest dealers).

I "oopsed" by mentioning chronic hypoxic RSD without explaining what I meant: ischemia means blockage of arterial blood flow; hypoxia is a deficiency of oxygen reaching the tissues of the body. Hypoxia is the result of ischemia.

When I used the phrase "chronic hypoxic RSD" I meant the cold (cyanotic) stage of RSD as opposed to the inflammatory stage. After studying IRI, I became convinced that RSD is IRI; all RSD, both CRPS-I and CRPS-II. (I will include the science supporting this view in that planned series of posts).

I'm sorry that I made it sound like I was talking about a new and different type of RSD.

(BTW: cyanosis is a bluish or purplish discoloration of the skin due to deficient oxygenation of the blood. When we see cyanosis, we are looking at microvascular systems (MVS') close to the skin surface that are filled with oxygen depleted blood.

Our MVS' should not be cyanotic. It means that blood is not flowing through them. Dead bodies become cyanotic because all circulation is stopped and the cells have depleted the remaining oxygen in the blood. If you're still alive, it means that circulation through the MVS' is blocked).


Hi BroadwayBaby, and thank you for the nice words,

You're right, the inflammatory and hypoxic stages of RSD do overlap. Inflammation can still be spreading when the central area (site of the injury) starts becoming hypoxic.

I'm not so sure about your view of 'specific treatments can only be effective if one is at a certain stage'. I believe it may be possible to stop RSD during the "transitional" stage by using antioxidants if the hypoxic/cyanotic area is not too large: that the body may produce enough VEGF to replace already plugged MVS if the area of destruction is fairly small, but at a certain point I don't think that is true anymore.

I believe that taking antioxidants has helped circulation in my RSD affected tissue; both the allodynia and the burning pain have significantly improved, but I can't be certain this is the result of GSE. Although it seems unlikely, I may be one of those patient's Dr Oaklander talks about who just get better on their own.

My hypersensitivity to cold hasn't improved at all, though, so I don't think my experience offers much support for Oaklanders scientifically unsupportable view that we will get better by the time we're too old to enjoy it.

All the best...Vic