[canagirl]

Hi

Just wanted to say I've decided to start hbot therapy in July. The pain is crazy, my arms and legs feel permanently asleep ( only when I'm not on my feet moving around) if I'm sitting or laying down they are 100% entirely consumed by painful pins and beedles, electrical " fuzziness" and rhythmic pulsing. The stinging is so intense along with the numb feeling. Things are progressing so quickly I feel in my heart that my limbs will be permanently numb very soon ( within months) I actually think I have sfn ( obviously due to biopsy) but I think I have body wide crps from the acupuncture. I've been reading studies about how needle injuries in mice leads to decrease in small nerve fibers and crps.

I'm scared the hbot will make things worse since everything I have tried so far does...but what choice do I have? I've searched the crps forum and I found a few people tried this. Some with improvements others none. But very few people tryout. I hope it helps since it will be a minimum of $6000

[Kitt]

Found this site which is one of many.

http://www.hopkinsmedicine.org/healt...tment_134,148/

[janieg]

Being a scuba diver, I have one piece of advice if you have no experience in that area...

In the chamber, you will be "taken down" to 2 or 3 atmosphere's of pressure. That's 60 to 90 feet. About every 10 feet, you'd going to have to equalize your ears. Have you ever been to the bottom of the pool and felt that ear pain? That's a pressure equalization problem. It's easy to equalize, but some people have more trouble than others. Some people just have to move their jaws around, and that's all it takes to get their ears to "pop" and equalize. I'm not so lucky. I have to plug my nose and gently try to blow out my nose. I assume the nurse in the chamber would tell you that trick, but I thought I'd mention it just in case.

I was in a chamber a few times for a minor diving incident. It's not bad at all. Just take a book to read or something to keep you occupied. You'll actually come out feeling pretty energized.

[EnglishDave]

Hi canagirl,

I must just say that if you go into ANY new treatment with the mindset that it is not going to work, or make your condition worse, your stress and Anxiety will find a way to make that the case.

You really must learn to relax and be pragmatic, if not optimistic rather than pessimistic about meds and treatments. Give them a chance to work, or at least help.

If you really have no faith in hbot treatment your $6000 would be better spent on a lavish, relaxing family holiday, say to Disneyland?

Dave.

[canagirl]

the hbot center only takes you to 2.4. They say medical literature doesn't provide enough info to say that going further gives any more benefits so they don't. The chambers are run by foreign trained doctors. I had contacted a few other places that were cheaper but they were personally owned chambers by individuals such as physio's and chiropractors with no training. They were about half the cost. I just feel better about going into the one with doctors.

They told me of only a couple risks

1. Changes to eyesight. however, they said this normally lasts only a few hours before returning to normal.

2. Eardrum pressure or damage. They said the patient has to take a few days off therapy and the issue resolves

3. Increased risk of seizure if you have seizures. If you experience seizures they don't take you above 1.5 ( I think he said 1.5) and they give you a mask to breathe into for a few minutes every 30min. I don't remember what they run through the mask. I don't experience seizures so wasn't paying close attention I guess.

If anybody has tried hbot and experienced any of these (or other side effects) I would appreciate hearing about them and if they resolved. thanks

[madisongrrl]

Originally Posted by canagirl

Hi

Things are progressing so quickly I feel in my heart that my limbs will be permanently numb very soon ( within months) I actually think I have sfn ( obviously due to biopsy) but I think I have body wide crps from the acupuncture. I've been reading studies about how needle injuries in mice leads to decrease in small nerve fibers and crps.

I'm scared the hbot will make things worse since everything I have tried so far does...but what choice do I have? I've searched the crps forum and I found a few people tried this. Some with improvements others none. But very few people tryout. I hope it helps since it will be a minimum of $6000

Did your neuro think you have CRPS? Do you have any of the outward signs? This can be ruled out/examined with a bone scan.

If I were in your shoes, I would hold off on this 6000 dollar therapy and give the doctors some time to try and find the cause of the SFN first.

[canagirl]

Originally Posted by madisongrrl

Did your neuro think you have CRPS? Do you have any of the outward signs? This can be ruled out/examined with a bone scan.

If I were in your shoes, I would hold off on this 6000 dollar therapy and give the doctors some time to try and find the cause of the SFN first.

no, the neuro hasn't mentioned crps. She only mentioned anxiety and if I get more sleep and stop worrying I should be fine. She is away so she hasn't seen the positive biopsy results yet. Maybe, she will listen a little more carefully now. I don't have the outward signs...but talking to people on the crps site there are many that don't have outward signs. I do have other signs from the criteria list.

The thing is... I know there isn't anything wrong inside my body that is causing this. This all begin with twitching and jerking after taking domperidone. In a quest to fix that problem a naturopath ran a microcurrent through me for 45 minutes, I went home that night and felt like I had electricity running through me and I burned horribly all over. The burning died down after about 6 weeks to a better level. I then did acupuncture and that's when things blew up in terms of pain, compression feelings, stinging, numb feelings, and pulsing. It definitely all could be a coincidence that this stuff happened on the very nights and morning after these treatments...but In my heart I don't think so. Everything is so slow here...I'm sure it will take another year to run the tests and get the results back for things only to all be negative. in the meantime... I don't know how to handle myself...

[jurgen975]

As a ex-scuba diver i think you will be fine.I a life time ago a introduction course how to operate a hyperbaric tank with noordhoek diving in rotterdam.But that is ages ago.
I think you will breath pure oxigen true your mask.How many sessions are you going to do for that 6000 dollars?o

What also could be the case with many of us is that our own immune system is attacking our bodies.
I have often thought of why my nerves got so damaged long after i took the medicine that is responsible for my nerve damage.

I found a very interesting article in the dailymail
http://www.dailymail.co.uk/health/ar...NT-KILLER.html

[madisongrrl]

Originally Posted by canagirl

no, the neuro hasn't mentioned crps. She only mentioned anxiety and if I get more sleep and stop worrying I should be fine. She is away so she hasn't seen the positive biopsy results yet. Maybe, she will listen a little more carefully now.

She might listen or she might not....sometimes neuros don't think much of a positive skin biopsy result once diabetes has been ruled out. Hopefully the gabapentin helps get your pain under control which will help your anxiety levels....this will help you present better to your doctors.

It is ALL about how we present to our doctors and make them want to look for a cause for our symptoms. It's very easy for them to write people like us off. Quite frankly, if these doctors had the full body, crazy symptoms like many of us on this board have, I bet they would be feeling mighty anxious too.

Originally Posted by canagirl

I don't have the outward signs...but talking to people on the crps site there are many that don't have outward signs. I do have other signs from the criteria list.

While it could be possible, I think the most logical assumption here is that you have SFN, and don't necessarily have CRPS. They have very similar symptoms and you already have a positive skin biopsy that points you in that direction. You said your Primary was doing his research. Maybe have a frank discussion with him about the lab tests that need to be performed - specialized nerve tests, autoimmune tests etc. There is a really great speadsheet from Lisa Jane that lists all the lab tests that a neuropathy patient should consider. Print it out and bring it into your next doctor appointment with your Primary.

You might want to consider not reading the CRPS message board for now, because it will spin you up even more. When I started on my neuropathy journey, my old Primary thought I had CRPS and boy was she WRONG....and her wrong assumption not only got my original neurology appointment cancelled (long story) but it also spent me down a path of research that seriously worked me up for no good reason.

Originally Posted by canagirl

The thing is... I know there isn't anything wrong inside my body that is causing this. This all begin with twitching and jerking after taking domperidone. In a quest to fix that problem a naturopath ran a microcurrent through me for 45 minutes, I went home that night and felt like I had electricity running through me and I burned horribly all over. The burning died down after about 6 weeks to a better level. I then did acupuncture and that's when things blew up in terms of pain, compression feelings, stinging, numb feelings, and pulsing. It definitely all could be a coincidence that this stuff happened on the very nights and morning after these treatments...but In my heart I don't think so.

The fact that you were already presenting with symptoms before the naturopath and acupuncture treatments likely means they were not the cause of your SFN symptoms. It seems as if the symptoms were already there and were just coincidentally starting to ramp up during those treatments. There could very well be something going wrong inside your body and the cause has not yet appeared.

Many people on this message board have had this style presentation - symptoms were slowing creeping in over weeks or months, then WHAM all the sudden full body symptoms appear in a very short period of time and they are debilitating. It's so shocking when it happens that it makes it very difficult to wrap your head around what is going on. I gain more perspective on my situation every day that I live with this full body burning awfulness.

Originally Posted by canagirl

Everything is so slow here...I'm sure it will take another year to run the tests and get the results back for things only to all be negative. in the meantime... I don't know how to handle myself...

I think that is even more reason to hold off on the 6000 dollar treatment for now. I'm not sure how it works in Canada, but you might get some faster testing and answers by paying cash for the lab tests that you and your doctor determine you might need.

My neuros have turned me out to pain management and are done looking for a cause for my symptoms. I have a sorted past of having been treated for a tick borne disease (4 negative lyme tests, but severe symptoms along with the timing of a deer tick bite back in 2005). I've typically have several known tick bites each year (ex-avid mountain biker). Plus, those dang deer ticks are even abundant in my back yard in suburban Madison, WI - which is not normal.

So for me, I've found the best use of my time and money has been to: 1. Get my pain under control via medication and therapy so I think clearly and make good decisions about my life. 2. Look for the most likely and logical cause of my issue. For me, tick borne disease is the next path to examine and cash will be king for this journey.

Good luck!

[Ragtop262]

Originally Posted by madisongrrl

So for me, I've found the best use of my time and money has been to: 1. Get my pain under control via medication and therapy so I think clearly and make good decisions about my life. 2. Look for the most likely and logical cause of my issue. For me, tick borne disease is the next path to examine and cash will be king for this journey.

Thanks madisongrrl, I think that's a really logical way to approach what most of us are facing.

For me, first order of business is to get a diagnosis - if for no other reason than to support my case if/when I have to ask for accommodations and/or go out on disability from work. Pain management is ok for me right now, although things are getting slowly worse.

I'm also seeking the cause, but it's tough because there are so many possibilities and no strong evidence to suggest any one is more likely than the others. I guess all you can do is rule them in or out one at a time