Back in hyperbaric oxygen therapy
 

Day six. So tired all I can do is sleep. It's an hour each way five days a week. I'm not as strong as last Jan when I did 40 treatments. I'm looking into finding a way to stay where the center is during the week.

Last time I went I was getting a mirror spread from my right affected ankle to my left. It completely reversed that spread. Also all the burning I was starting to feel on my arms and other places. An outlier to my RSD has always been the extreme edema up my entire right leg and upper pelvic region. I'm little and it was about 15 lbs of edema. After 40 sessions of HBOT, I only got a very mild reduction of the edema. Maybe I needed more sessions

Cut to seven months after my last treatments and I'm now starting to feel pain and spread to the left foot again. But worst is the spread of edema to my upper left leg and moving up my entire trunk. I've gained 8 more lbs of edema in the last two months. This time I'll go 80 sessions if they'll let me.

I also have a whooping four hour infusion of ketamine every two to three months. It helps the pain but does nothing for the edema. I've also had bisphosphonate infusions which did nothing for the edema.

All these treatments helped a lot of things but not the edema. This is atypical.

I'll let you know how it goes of people are interested.

Hope you get the relief you are looking for. Keep us posted. ~mac

CD,

I hope you get some relief and find a convenient place to stay. The drive sounds exhausting to do day after day.

Forgive me, but I forget on the edema. Is that all CRPS or is something else going on? It must be miserable.

Best to you with your treaments.
sending hugs and healing love, :hug:

Hi CDWall,

We had "met" on a different forum here.

You definitely have your hands full. ;)

Of course we are interested in how you do with the treatments!

I hope you feel better with each passing day.

Please keep us posted.

:hug:
DejaVu

A few of the things I tried while undergoing HBOT were swimming in warm water, baths with Epsom Salts, massages and infrared saunas. They seemed to help, and certainly can't hurt.

If you can find somewhere to stay and reduce that commute, that would be ideal!

Just a reminder: the Bowen Technique for removing excess fluid.

Day nine
 

Thanks to all for your comments.

LittlePaw: They think the edema is from CRPS. The next time I go to my PCP, I'm going to ask her if I need to be referred back to vascular. It's apparently blood pooling as shown by three phase bone scan. I've been to a trillion specialists. I'm pretty tired of it but this is a major problem and unlike others with CRPS so I think a trip back to vascular is in order.

DeJaVu: You've got me curious which forum I "met" you on :) I do have my hands full. So many problems. Most major in and of themselves. It seems like a mystery no one can totally solve. I don't want to be special. I just want to be like everyone else :(

LIT LOVE: I do Epsom salts baths every day. The other I can't manage right now. I'm scratching and clawing my way back and forth each day and it's all I can do. My sister took me most of last week and will drive me some more of the time this go round. She had to last time too. Plus I just couldn't make it some days last time.

BioBased: Medically, I'd be pretty scared to offload 20 plus lbs of what could be inflammatory edema too quickly by any method unsupervised. Plus we're talking about over a third of my body to wrap at this point. They don't quite know what is causing the excessive swelling. I can temporarily reduce it some by various techniques. Mostly gravity. It's caused by my blood vessels not working properly and or inflammatory swelling. Gravity is a major factor. Even if your technique worked it would just some back when I stayed on my feet long enough. It always does.

I'm just too wary of trying your technique right now. I also have POTS and Addison's and have to be careful about too much of a shift in fluid balance and electrolytes. Maybe another time or a smaller area. But thanks for the suggestion.

I haven't felt as bad today as the last eight sessions. I've been coming home and sleeping like a dead person for several hours after. Then I'm still done for the day. Today slept I could do a few things once I got up. Staying closer does not look like it's going to work out right now unfortunately.

Will keep you posted as I can.

Denise

Denise,

Just for clarification the BT doesn't pull off lots of fluid at once, at least it did not do this for me. It was a gradual process that took several weeks and in my case the swelling was localized to one area. I am writing this not to harangue you, but to explain the process further so others will understand. You would only use the BT on one area at a time, on alternate days, no more than three times a week.

I hope you continue to improve.

Day ten
 

Thanks BioBased.

I increased my steroids a couple of days ago and they kicked in well enough that I feel much better today. I can't keep them above normal for long but I hope it will get me over the hump. I was even able to go grocery shopping today.

Again, there's no decrease in the swelling yet but that wouldn't really be expected until abut 20 treatments in. I do feel less fuzzy headed and clumsy. And best of all less dizzy. My constantly newly formed bruises are healing faster. Pain levels vary so I cant comment much on that. HBOT helps a lot of things. I just wish it would help the swelling.

Denise