I'd like to preface this with the fact that I've read all the old posts on here and everywhere else I can find, including medical journal articles. I just want to see if there are any additional comments or experiences from members of this list:

After a long journey to find a reputable clinic (that will do off label) on the advice of my Drs, I'm starting hyperbaric oxygen therapy (HBOT) this Monday. I'll do 10 treaments and then evaluate before doing 30 more. I have pretty severe swelling in my entire right leg and lower right abdomen. I'm hoping at the very least, it will help the edema. Has anyone had this treatment? If so, what kind of results did you get?

Thanks for any help.

Denise

hi Denise. i hope that your treatments will help you. i have never tried this procedure so i can't offer any advice but wanted you to know that i am hoping for the best for you and will keep you in my thoughts. take care and soft hugs.

Depending on the protocol the HBOT center is using, 10 might not be enough to really determine if they're helping. I didn't experience much change until we started diving deeper, faster. Ultimately, it cleared up an area I had spread to, but didn't change my original site--although swelling was reduced. I would encourage you to attend pt, swim in a warm pool, do yoga or tai chi, have massages, go to infrared saunas, if at all possible, during the same time period. Follow the CRPS diet. Take high doses of Vit C and if you respond well to steroids, start a course maybe after your 3rd or 4th dive. Reduce as much stress as possible and make it a period of time where you're truly focused on healing.

Hi LIT LOVE. Thanks for your reply. It was very helpful. The ten days is more so I don't have to commit to 40 sessions if I'm having some complication such as with my ears, sinuses or such. I have a lot of problems.

I'm on Dr. Wahls' Paleo diet and I've been doing a lot of meditation, and yoga as I can. I used to do yoga consistently years ago so I have a good routine. I think I'm covered with the supplements such as Vit C.

I've had Addison's for 25 plus years so I have to take replacement steroids every day. I also increase them as needed for other autoimmune and rheumatological problems. I think I'll know if I need to increase them depending on how I feel but sometimes I need cues to help me decide. It was a good suggestion to consider increasing them.

Finally, thanks for the reminder to keep this period of my life as stress-free as possible with the thought of dedicating it to healing. That's a good mindset.

How long did it take for your swelling to start going down and was it permanent?

I had spread into one of my lower legs that had been getting progressively worse for about a year, and the HBOT resolved that area.

My original site which is my dominant arm, was 7 years post RSD at the time and I only had temporary swelling relief--within days my arm was back to it's regular dysfunctional self.

Thanks for sharing is my first time hearing about it and I have a new pmp hope we can incorporate in my case. thanks to all ,Jesika .

The first HBOT treatment today went well. No changes yet of course. Maybe a little less dizzy and foggy headed. Now for 39 more. I'm excited!

Today is my day off. I go every day except Sunday. First six HBOT treatments report:

No reduction of swelling yet I knew it would take time though. I still have 34 more treatments to go. Good news is I'm having less pain, the leg doesn't feel as inflamed and best of all, I'm way less dizzy so I can drive! I've been housebound most of the time for months because of the dizziness. It’s tough to drive the two plus hours every day but I'm committed to it.

It's supposed to make you really tired and hungry as it ramps up your metabolism to help healing. So far I'm really tired and sleep a lot but not hungrier. If I'm as skinny as the skinny (un-swollen) parts of me look, I'm really skinny. It's weird to not know what your body looks like. At least the body I'm used to. Anyway, this treatment has become my full-time job. If I’m not there or driving back and forth there, or doing my allotted one errand a day that I can manage, I’m sleeping an insane amount, researching or meditating or figuring out supplements, or something related to getting the most out of this treatment and healing.

Don't worry, I won't bore you with blogging this every week. I'll reserve further posts for major changes.

Denise

Thank you for sharing, Denise! I've heard of several people who had very good results with HBOT, and several others that had at least some improvement. Please keep us informed. I definitely have an eye out for this treatment.

You're surely not boring anyone with these updates ~ all who suffer from this horrible disease (esp my daughter) are anxious to hear if these treatments help you!! Best wishes!!