[cdwall]

Hi all,

My original presentation of RSD was in my right ankle Achilles tendon area. This came on quite abruptly the day I went to divorce court. Then, a few weeks later I had upper right pelvic swelling and pain. They thought I had a pelvic mass. My lymph nodes hurt in several places, including down the insides of my thighs and they thought I had lymphoma in the inguinal region. After I was finally diagnosed with RSD they only call it RSD of the right leg on my chart. Eventually, the area from the right ankle to the upper right abdomen (above the pubic bone) filled in with edema to the extent that I have about 20 lbs of edema in that leg and lower abdomen. It seems to be spreading to my entire lower trunk and over to the left upper thigh.

After all that history is my question. I had a one day very high dose ketamine infusion on Monday, my fourth in this protocol every two months. It seems to have made me worse this time. I'm having a lot of pelvic floor visceral pain. I understand ketamine can cause a flare and then you get better. But for now...

For those with that kind of body involvement, what kind of PT or exercise can you do, or is it even advised? I know you're supposed to keep moving on hurting extremities, but do you do things that cause worse pain when there's internal involvement like mine?

Denise

[-Spike-]

Originally Posted by cdwall

Hi all,

My original presentation of RSD was in my right ankle Achilles tendon area. This came on quite abruptly the day I went to divorce court. Then, a few weeks later I had upper right pelvic swelling and pain. They thought I had a pelvic mass. My lymph nodes hurt in several places, including down the insides of my thighs and they thought I had lymphoma in the inguinal region. After I was finally diagnosed with RSD they only call it RSD of the right leg on my chart. Eventually, the area from the right ankle to the upper right abdomen (above the pubic bone) filled in with edema to the extent that I have about 20 lbs of edema in that leg and lower abdomen. It seems to be spreading to my entire lower trunk and over to the left upper thigh.

After all that history is my question. I had a one day very high dose ketamine infusion on Monday, my fourth in this protocol every two months. It seems to have made me worse this time. I'm having a lot of pelvic floor visceral pain. I understand ketamine can cause a flare and then you get better. But for now...

For those with that kind of body involvement, what kind of PT or exercise can you do, or is it even advised? I know you're supposed to keep moving on hurting extremities, but do you do things that cause worse pain when there's internal involvement like mine?

Denise

i don't have an answer to your question, but.... I would just like to say that I admire your dedication to getting better in spite of the tremendous hardships that are before you. Denise, you are a very courageous person. And.. I admire that courage. You are in my prayers. I Pray you see fantastic results for your efforts.

[cdwall]

Originally Posted by -Spike-

i don't have an answer to your question, but.... I would just like to say that I admire your dedication to getting better in spite of the tremendous hardships that are before you. Denise, you are a very courageous person. And.. I admire that courage. You are in my prayers. I Pray you see fantastic results for your efforts.

Thank you for your support, Spike. There are many facing challenges as bad or worse than mine. I try to keep in mind that I am lucky in many ways.

[Littlepaw]

Denise,

I don't remember if you swim or have access to a pool. Aquatherapy is safe for many that can't exercise on land. Though I don't have internal involvement, I did struggle with swelling and circulation issues in my leg for many months and was confined to exercise in the pool. I felt it really helped both issues and I could even see a difference in my leg when I got out of the pool. There are many exercises besides laps that can be done with a buoyancy belt.

On the ketamine, I have noticed times that I was a little flared for day or so after and then it settled.

Sending hugs and healing love,

[catra121]

I have RSD in my abdomen internally after having a c section a little over a year ago when my daughter was born. It's awful and I haven't been able to do any exercises (involving my abdomen...so still have huge baby belly fat a year later) or even wear normal pants due to the extreme sensitivity in that area (so maternity pants are now it for me because anything else...even normal leggings with elastic band are just too darn painful). I have not found anyone who has been able to recommend anything that helps with this. I would love to lose the belly I have now...but really cannot because of the pain and I have come to terms with it...just not worth the toll it takes on me physically to try and do anything about it. I can still do all my other PT exercises so long as there is no bending at the waist and if its sitting I have to basically stay seated for a while before I begin and after I'm done as changing positions from seated to standing or laying flat is the worst for me.