In absolute full body pain - excruciatmg 24/7) I have severe FM and RSD. Mine is aching pain - not burning. Disabled now - in knees, ankles, hands. Tried everything - over 30 meds, alternative therapy - no help. Comsidering Hypobaric oxygen therapy but scared it could make me worse.
Anyone know about this or any other treatment.
Sydney

Hi Sydney,

I am probably more knowledeable about HBOT than just about anyone here. In fact, I am writing an article about RSD and HBOT I plan to submit for publication to a medical journal on HBO.

If you read the thread Fact, Fiction and RSD, you know that I believe that it is more likely that this disease is caused by what is called an ischemia-reperfusion injury (IRI) than by a nerve injury, HBOT is often used to treat IRI.

A number of RSD patients have had HBOT, some with very good results; some with brief remission followed by catastrophic relapse. I am sure I understand what causes the relapses and how to prevent them.

Unfortunately, I have been working on the article I mentioned most of last night, and am too tired and weak to write at length right now, and I feel I need to go into some detail, describing what appears to have been effective in preventing relapse and the reasons I believe that HBO chamber operators use too much oxygen and too high a pressure to offer the best outcome in treating RSD.

It usually takes me a full 48 hours to recover my energy after writing so long on my article, so I will probably need that much time before I am able to write in detail about why I think RSD patients need a lower concentration of oxygen at a lower pressure.

I will reply in as much detail as space allows sometime Saturday. Then you will have the opportunity to review my reasoning and decide whether it makes sense to you...Vic

Hey

I have had HBOT - didn't make a magic difference with the RSD = but then again a 50 mile round trip 3 times a week when you can't bear being in a car doesn't help much! I think the worst thing was the ear popping,, but it did heal the RSD ulcers/

alot of people i kmnow have had dramatic results with it though and anything is worth a try

good luck
rosie xxxxx

I did 2 series of HBOT in 2002. The "old forum" has everyday of my experience documented. There may be a way for you to search the internet for some of the old posts but I don't know how.

To make it short, the first experience I had was great. I went to my 1st treatment on crutches and when I came out I could bear some weight for the first time in several months. I also grew new veins back all over my foot and leg and went into a remission for a short period of time.

When I relapsed, I went for treatments again but at more pressure and longer and I had a terrifying experience. Myself and another person with RSD in her ankle were in the chamber together and we both felt high like never before. Then I couldn't feel the tips of my finger tips. Both of us had what we think was oxygen toxicity.

Both of us had the same scary headpain and popping in our spines. She ended up herniating a disc and had surgery. I ony bulged 1.

Anyways, the place we went to didn't know what they were doing. I truly believe that if we went to a reputable place( I know of one in florida) it never would have happend.

I do know another person( from the old forum) who went to get HBOT in florida and he has recoverd. I met him a few years ago and he was back at work.

My advice to you is read all of Vicc's information, research it yourself, try to get as much info as you can before you decide and above all, make sure they have been doing it for a very, very long time. The doctor in florida is in his 70's and has been doing hbot to people for many, many years and his office has other doctors who fully evaluate you. It's worth going there.

Peace and hope,
Lisa

here's some links to HBOT/RSD cached posts-

http://72.14.253.104/search?q=cache:...s&ct=clnk&cd=2
http://72.14.253.104/search?q=cache:...s&ct=clnk&cd=1
http://72.14.253.104/search?q=cache:...s&ct=clnk&cd=3
http://72.14.253.104/search?q=cache:...s&ct=clnk&cd=6

to find more use the line below in a google or other search engine-
site:hastypastry.net Hbot rsd

you can change the Hbot & rsd to your name or any other topic you want to look for
and be sure to use the cached version to click on not the top link.

Hi Sydney,

I am finally able to write to you (and others) about why HBOT is the only safe and effective therapy for RSD,

Before I can talk about how HBOT acts on RSD, I need to explain how RSD acts on us, and it isn't nerves affecting other nerves, bone, tissue and microvascular systems (MVS). Only then can we understand why HBO works against this disease.

RSD is an ischemia-reperfusion injury (IRI). This is a well understood disorder that was not discovered until a century after the discovery of RSD. It it is well understood because research into it is light-years ahead of that into the disease we suffer. The research was done because patients who underwent surgery on internal organs had an unacceptably high mortality rate and doctors needed to learn why.

IRI killed these patients because most of our internal organs are essential if we are going to live and because the those organs are made of a different kind of soft tissue than our skin and muscle. The disease killed quickly. We don't die because our skeletal muscle and tissue aren't necessary to sustain life.

IRI begins with a physical trauma. This trauma damages cells and the primary white blood cells (WBCs) of our immune system are programmed to react to cell debris in the same way they react to a pathogen. Attack, destroy and release chemical messengers that activate other WBCs which then begin moving toward the site where the cell debris or pathogen was discovered.

How do these chemicals contain and transmit the information that not only alerts other WBCs but tells them where to go? No one can answer that question, but researchers have demonstrated that it does happen [1].

The reason these WBCs react to cell debris in this way is that many pathogens, and all viruses, do only two things; eat cells and multiply. They are incredibly efficient at both; a virus that enter a cell will become 300 viruses and completely consume the cell interior in about an hour. Once those viruses have eaten the cell, they break through the remaining cell wall and race to find another cell. Do the math and you will see that a single virus can become more than one billion in about six hours. Cell debris could be the leftovers from a meal and the first sign the body has been invaded.

Our WBCs "patrol" the entire circulatory system, but there is only one place they can discover cell debris and be "fairly certain" that other viruses are nearby; the microvascular systems (the arterioles, capillaries and venules that deliver arterial blood to the cells and return "used" blood to the veins. This interface between blood and cells is also the interface between pathogens and WBCs. When a WBC encounters cell debris or a pathogen in an MVS, it is likely that more will be found on the other side of the capillary wall.

In order for the WBCs to get access to the cells on the other side of the capillaries, they must release a destructive "chemical" that creates gaps in the capillary wall large enough for them to pass through. Pathogens and bits of cell debris are much smaller than WBCs and they are able to pass through the capillary wall and into the MVS during the process in which waste is transferred from our body cells to our red blood cells, where it is carried away to be filtered by internal organs.

Once the immune system is satisfied that cell debris from trauma does not mean there are pathogens among the cells, the immune response subsides; except in IRI, something goes wrong and WBCs keep pouring into the area.

The "chemicals" our WBCs release to create gaps in the capillary wall don't destroy the specialized cells that make up that wall, but they do destroy pathogens and cells. I mentioned that viruses and other pathogens invade cells and eat them from the inside; it is necessary to destroy cells in order to destroy the pathogens that may be inside them.

These "chemicals" are also the cause of the inflammation that goes along with an immune response. They cause swelling and generate heat, both of which are critical if the invasion is to be minimized until other WBCs that will destroy every pathogen in the body can be made and released into the blood.

Swelling (edema) causes the sac that holds the cells in place to expand and compress tiny nearby arteries and veins. This compression of veins prevents the pathogens from using them to circulate to other parts of the body. The heat destroys many pathogens, that cannot survive when the temperature around them increases to just two degrees over normal body temperature.

Compressing the tiny arteries prevents all of the WBCs from only reaching the original site where the cell debris or pathogen was discovered. This, too, is critical; it is likely that other pathogens are in nearby cell sacs, and when these WBCs are prevented from reaching their destination because the tiny artery they are in is compressed, they invade other nearby MVS'

They release their chemicals to create gaps in the capillary walls and other WBCs follow behind, enter the cell sacs, and release their chemicals there. This results in the destruction of countless healthy cells in uninfested areas, but our bodies are not programmed the way our justice system is, where 'it is better to let ten guilty men go free rather than wrongly convict one innocent man'; it is better to destroy hundreds of thousands of healthy cells than to allow one pathogen to survive.

As I said earlier, IRI is a disease process that begins when the immune response to cell debris doesn't end as it should. Instead, it spreads over an increasingly widening area as inflammation and edema compress an ever-increasing number of tiny arteries, forcing WBCs to invade cell sacs more and more distant from the site where the original debris was discovered. This is how RSD spreads during the first, or acute (inflammatory) stage of the disease.

But it gets worse. Once our WBCs release their chemicals they literally "morph" into another type of cell; the phagocyte. Their role now is to capture and consume the debris they created earlier. They become adhesive in order to "get a better grip" on the debris as they consume it. After they consume their portion of the debris, they are programmed to die. This program is called apoptosis.

Well, all of those phagocytes don't die in IRI. It may be that there isn't enough debris to go around, and if they can't find any to consume, they just keep looking.

Here is where things really go wrong. I said that our WBCs create gaps in the capillary wall so they can pass through those gaps and enter the sacs containing the cells; blood plasma also passes through those gaps, filling the cell sacs (this serves to increase edema and lengthen the period when veins and arteries are compressed); cell debris, WBCs and adhesive phagocytes float around in the fluid, and some of them drift through the capillary wall and reenter the MVS.

When an adhesive phagocyte enters the MVS, it is carried by the blood from the capillary to the venule. The interior of the venules is smaller than phagocytes or WBCs, and they pass through these venules because the blood pressure pushes them through.

During the immune response, blood pressure in the MVS is lowered as some of the plasma leaks into the cell sacs. A WBC being carried into the venule would have a more difficult time passing through it, and an adhesive phagocyte is not going to make it. It sticks to the venule wall. After a while another phagocyte reenters the MVS and is carried to the venule, where it sticks to the venule wall and to any phagocytes that arrived there before it.

IRI is plugging of the venules of the MVS, If blood can't pass through the venule, fresh arterial blood can't enter the MVS; it is already full.

Without fresh arterial blood, the various products needed to repair the capillary wall can't get to where they are needed. The result of this is called vascular permeability. Oxygen and nutrients can't reach the surviving cells served by that MVS.

Without oxygen and nutrients, our cells have nothing to metabolize (transform matter into energy) and no oxygen that is necessary for metabolism to take place. A cell sac can be served by multiple MVS', and WBC invasion of other MVS' is random; not every MVS in the affected area will suffer the damage to capillary walls or plugging of venules.

Our cells interact with our nerves and with other cells in a number of ways, some of which are not understood at all. What is known is that cells in a sac that are still receiving arterial blood actually transfer oxygen and nutrients to cells that aren't. This keeps those cells alive, but the donor will not have enough of either to metabolize properly, and the recipient won't either.

It is cell metabolism that creates the heat that keeps our bodies warm. Impaired metabolism means that cells don't generate enough heat in RSD/IRI affected areas. This is why cold affects us so terribly in affected limbs; the limb is not able to heat itself.

Nerves need oxygen and nutrients too. I won't try to describe research into ischemia (blockage of arterial blood flow), but I know from reading this research that if you take a blood pressure cuff and apply it to your arm, raise the pressure to above your normal diastolic blood pressure, then wait just a few minutes, the touch of an ice cube to your hand will cause intense burning pain. This is the allodynia we suffer.

Sensory nerves that don't get enough oxygen and nutrients can't function properly. I have not read any research explaining how ischemia affects our pain sensory nerves (nociceptors), but I suggest that they don't like it and they tell the brain that in no uncertain terms, using the only language they have; pain messages. The constant burning pain of RSD.

Bones need the same things as other cells, and they need lots of calcium, all of which is delivered by the blood. Some bone cells get enough calcium, others don't; this is the cause of patchy osteoporosis.

Nails and hair follicles need these things supplied by the blood too. You can look at how slowly your nails grow, how the hair on your limbs disappears. I think you know what I am telling you causes this.

There is another thing you can look for, cyanosis; that blue to purplish -- or sometimes blanched or gray -- skin color that corresponds almost exactly with the areas you feel pain.

What you are looking at are MVS very close to the skin surface. They are filled with oxygen depleted blood that can't pass through the MVS and into the veins because the venules are plugged.

Finally, our skin radiates excess heat generated by cell metabolism or absorbs heat when the body isn't warm enough. The capillaries that carry too warm blood to the skin aren't carrying warm blood, and so our skin temperature is lower and we are hypersensitive to cold.

Every sign and symptom of RSD can be fully explained by the known disease process I just described to you. This is why, after years of reading the literature on RSD, the immune response to trauma and IRI, I reached the inevitable conclusion that this disease is not the result of a nerve injury; it is the result of physical trauma to tissue. It is an ischemia-reperfusion injury.

If you read my post 4-1/2 years of being wrong, this explanation of IRI is about as brief as I can make it. If I had time, I could fine-tune it a little; and I will in future posts, but I am anxious to get this posted after such a long delay.

Bare-bones as it is, from my point of view, it is enough for today. If you care to read this post carefully and skeptically, I think you must be further down the road to understanding what RSD really is. I hope you will.

I will follow this post with a (hopefully) shorter post on how HBOT affects RSD/IRI. I can't promise it will be shorter because I believe that current HBOT protocols involve too much oxygen at too high an atmospheric pressure.

I not only need to explain how HBOT can successfully treat RSD/IRI, but I also need to explain why many RSD patients who have undergone this therapy got better and then got catastrophically worse. I know why. I have shared this with others who decided to try HBOT, and none of them suffered that catastrophic relapse. I look forward to sharing it with you...Vic

Vicc,

I am doing HBOT therapy now for TOS surgery/nerve impringement.

What is the optimal level?

Thanks
Shelley

Vicc,
I have severe Fm throughout my body from my face to the soles of my feet. I a lso have RSD in my lower back from an epidural and in in my hand and arm from an IV. Actually, who knows what is what - RSD vs. FM? They all overlap.
Do you think HBot works for FM. I read on the Florida HBOT website that it is used for FM.
My concern is that my local Dr. just got the machine and offered me to use it. Unfortnately, he does mpt have the experience using it so I am concerned. However, he is willing to do it free of charge as I am his only patient with rsd and he wanted to see if it would work.
Any thoughts????????????????????????????
I am concerened about my ears also. They are often affected by plane rides. I must chew a lot and swallow when we go up and down.
Sydney

I believe some of the hospitals and Drs. now are offering HBO. You might check in your area or the biggest city around you.

I live in Co. and I know that they are offering it in Co. Springs and Denver. It is getting to be more popular for some things. I knew a woman in Denver that went through it and it didn't help her at all.

It use to be a big discussion on the TOS forum and some might have tried it but after talking to the lady in Denver, I didn't do it.

Also, it needs to be a reputable place as someone said that does it. I knew someone here that had a portable HBO chamber for her child and she offered to let me use it but I decided not to. The do make portable ones. I think they are sold out of Texas somewhere.

I would do a lot of study on it and see if you can find a lot of people who have had success. I think it's important to hear from more then one or two people on anything because that is just not enough justification of the success of anything. Read those websites that Jo put up also.

You might go to the TOS forum and ask on there also.

Good luck,
Ada