Dear Lorreta -

I wish I could have gotten rid if my RSD. Alas, I've just sort of learned to live with it. There have been a few times along the way when I thought I was about to get a major new treatment, only for it not to pan out at the end, whether it was a ketamine coma in Germany (disqualified with less than 2 weeks to go because of pre-existing glaucoma) or more recent electroconvulsive therapy - using ketamine as the general anesthetic - which my doctors were willing to do but the psychiatry dept. at their hospital/medical school is now requiring be it approved as a formal invetigative study by medical school's institutional review board, something that will take another year at least.

What "saved me" was getting into a Mindfulness Based Stress Reduction (MBSR) class that combined meditation and yoga with a sense of general acceptance for just what was going on in the body. Not acceptance in the sense of anything fatalistic, but just learning how to pick your battles, and not struggle with pain that's just going to be there anyhow: you either take something for it or you let it flow through you. In the words of my teacher Shinzen Young, suffering equals pain times resistance. Sometimes you can't do anything about the pain, but resistance is always under your control. Jules put up a nice post about Shinzen and his book, Break Through Pain, the other day, the sixth item in this thread: http://neurotalk.psychcentral.com/thread54819.html

Finally, you asked how I got RSD. In a fit of self improvement I went to the gym and hired a personal trainer, in an attempt to have more focus in the office. Long story short, he put me on some equiptment (1) I never would have chosen for myself and (2) people with flat feet had no busniess being on. I ripped tendons in both ankles and that was that. Now, I should say that at the time there was a lot of stress in my life, and there's some evidence that there is a greater chance of developing RSD when folks are injured who are already under significant stress, whatever the immediate tauma happens to be. I know a few people on this forum for whom that was their experience. (And there's another aspect of the RSD/inflamation puzzle.)

Mike

Did you have a scare one time where you where allerigic to a med or is it something else???? I'm afraid that RSD is a long disease and you will eventually have to try some of the medicines we have to take to get through the day in order to make it.

Try soaking in a hot bath for now. Good luck to you.

Patches

Thank you for the very interesting articles Mike, I believe you can always be counted on for your sound and interesting contributions to the board. I had read the information about Omega 3 fatty acids that you posted previously and embarked upon an overhaul of my diet as soon as I read that, just prior to my surgery. I don’t eat fish so I started to take Omega 3 fish oil supplements, which is most likely the best in the case of trying to modulate the inflammatory cytokines. I'm also exploring the recommendations from Jolaine regarding enzyme and Dr. Galland's book “Fat reduced diet” which really should be called the anti-inflammatory diet.

It will be a bit challenging to know if any of this makes a difference because my PM doc has stepped up my treatment and is being more aggressive giving me lidocaine weekly alternating between IV and the subcutaneous treatments. He also slotted me in for a series of 3 lumbar sympathetic blocks. He finally understands me when I tell him I can't tolerate a medication as I was hospitalized recently for another serious reaction to a new med.

As you say Mike there is no harm in trying and the cost of omega 3 fish oil is fairly negligible, certainly a healthy diet is always wise.

Loretta when I was in Germany I heard the term centralized RSD used in association with full body RSD. I don’t know if there is a difference but to me centralized RSD seems to makes sense for what its worth.

MsL

Hi All,

I thought I would follow up on this thread since I've seen some significant improvement since I started to follow a few suggestions made by many of you.

A month ago I started taking an proteolytic enzyme called Serrapeptase after researching the suggestion made by Jolaine earlier in this thread. I chose the Serrapeptase because some research suggested that Serrapeptase induces anti-inflammatory and anti-edemic (prevents swelling and fluid retention) activity in a number of tissues, and that its anti-inflammatory effects are superior to other proteolytic enzymes. It is also suggested the besides reducing inflammation, one of Serrapeptase's most profound benefits is reduction of pain, due to its ability to block the release of pain-inducing amines from inflamed tissues. Because of the anti-inflammatory and pain-blocking benefits of this substance some are using it as an alternate to ibuprofen and other NSAIDs.

The brochure that came along with the enzyme I bought at a health food store claims the following :

Serrapeptase is thought to work in three ways:

1)It may reduce inflammation by thinning the fluids formed from injury, and facilitating the fluid's drainage. This in turn, also speeds tissue repair.

2)It may help alleviate pain by inhibiting the release of pain-inducing amines called bradykinin.

2)It may enhance cardiovascular health by breaking down the protein by-products of blood coagulation called fibrin. Conveniently, Serrapeptase is able to dissolve the fibrin and other dead or damaged tissue without harming living tissue. This could enable the dissolution of atherosclerotic plaques without causing any harm to the inside of the arteries."

There are many claims out there on the Internet made by the companies producing/selling this enzyme, most refer to a few of the same clinical studies, but it was hard to find the actual studies themselves, everyone just quotes the same source. That being said according to wikipedia "A systematic review by the evidence-based health care medical journal Bandolier stated that the evidence on serratiopeptidase being effective for anything is not based on a firm foundation of clinical trials." I believe they reviewed 34 studies to reach this conclusion.

Everything I read about this indicated there was very low risk of any side effects so I thought what the heck it can't hurt, I cleared it with my doctor and started to take it. Within a few days of starting this I noticed an reduction in the swelling in my rsd foot, an increased range of motion and a significant reduction in pain. So much so that my dr. & I decided to cancel my scheduled lumbar sympathetic blocks and I've been returned to my regular schedule of IV Lidocaine infusions from once a week to once every 3 weeks. While lidocaine infusions do improve my range of motion it typically wears off and I'm completely stiff by the time I'm due again for another infusion. Not anymore, I'm now able to walk without a limp and don't need my cane. If this is due to all of the aggressive treatments I had following my surgery or a result of the Serrapetasse itself I will never really know. I still get some deep cold burning and bone pain and need to continue to manage that, but it is no where near what it was. I've been able to reduce my use of Ibuprofen and Tylenol 3 quite significantly as well. It appears as though the scar tissue has also diminished significantly and my PT is now able to do full massage and traction on my foot. We were both amazed that she could touch my foot like that. What ever it is I sure hope it stays. I was originally only going to take this seappetasse for a month but now I've decided to continue on, why switch a winning team.

Patches, to answer your question I did have had severe reactions to medications, one made me neutropenic destroying my white blood cells and landed my in isolation in the hospital for a week while another gave me a severe case of tinnitus and partial loss of hearing, permanently. Over the past 6 years I've tried the majority of the prescribed meds for RSD and my doctors have had to take me off most of those meds because my sensitivities and allergies. That being said a good long hot bath is always a great way to make one feel better.

Thank you all for your help and support!


MsL

Hi Jeanne,

I am so happy for you and your daughter. How great is that! There is one lady on here Diana A that has a home hbot. I'm going to ask my Dr. about that next week. Your daughter must be thrilled. How old is she? and How long has she had RSD? and where? I don't even know how they work, or what you do.

Jeanne, I tried writing you back, but it didn't go thru. I'll try again. Take care, Loretta

Hi Mike,

Thank you for all the information and research.I'm sorry you have RSD too. I've always felt stress at the time of the injury or surgery or whatever, plays a part in those who get RSD and others that may have same surgery or injury are not effected. I was going thru a very stressful time when I had the surgery and the RSD showed up the very next day. I didn't know if for 4 years. The next day my entire arm swelled up and then next thing was frozen shoulder. Lot of PT and massage therapy. and on and on. That's been 12 years ago.

I've been to Bio Feedback and practice meditation also. I'm so relaxed, can go into the MRI for an hour without any meds, and just put myself on the beach in Maui.The pain thing is a lot more difficult. I use music, scented candles, massage, various essential oils, family vacation albums, talking to friends on the phone, especially giving encouragement to friends that are experiencing tough times, of course trying to be balanced about that.

Thanks again, Mike, for listing the references. I'm going to pick up the book and start on the anti-inflammatory diet. I alread take the Omega 3 fish oil. My Dr. has really helped me, I'm out of the deep deep depression I experienced for a long time. I did start Cymbalta 60 mg. about 6 weeks ago, but it's more than that. More like, came to acceptance, and grateful for a lot of things instead of looking back and missing all that I can't do. Was really involved with all kinds of sports.

Have you checked out HBOT? A couple of friends here have really been helped with it. I'm going to ask my Dr. Monday. Take care, Loretta

Hi MsL,

Sounds like you are doing something good for yourself! That's great. I'm taking the Omega 3 fish oil too. I'm going to try and find the book this week. Ask my Dr. abut the Serr.

I had one neurologist call my condition generalized RSD. That and centralized make sense, Thanks. Would you mind telling my about your experience in Germany? I know a study was done here at the Mayo, about a mile from our home. Arizona. Dr. Swartzman, Dr. Harbut, a German Dr. and a couple others were involved in the study. They don't do the procedure with ketamine at the Mayo here anyway. I tried to get scheduled in Penn. but was put off a couple-three years.

So happy again to hear you are responding to either the pt or Serr. I had a lot of good months after initial RSD and good therapy. Then it started in other shoulder and more PT. Then several months of no symptoms till nerve pull in left hand while water skiing. Never any relief since then. They used to call this shoulder-hand syndrome. Take care, Loretta