Any Scuba divers out there w/severe CFS?

[Wendy B.]

Hello.

I used to Scuba, mountain bike, and rock climb and I miss it...Any divers out there with severe cfs who still dive (warm water, drift water etc)? Anyone know of any studies about how our mitochondrial/metabolic-challenged systems excrete the excess nitrogen? I called DAN (diver alert network) and they really didn't know and said to see a doc. I don't think my doc really even gets our mito issues.

Thanks!
Wendy

 

[Snowdrop]

"Any divers out there with severe cfs who still dive"

OK. I'll go out on a limb here and say: I really don't think so Wendy.
Having severe ME/CFS means that they are house/bed bound so unless they can manage to scuba in the bathtub. . .

I have provided links for you that will give you an idea of how disability is rated in ME/CFS.

http://drmyhill.co.uk/wiki/CFS_Ability_Scale_-_a_rough_measure_of_how_disabled_you_are

http://www.hfme.org/themeabilityscale.htm

http://users.snowcrest.net/soza/DrBell.htm

 

[Wendy B.]

I have difficulty walking a block or two much of the time, pretty bad orthostatic intolerance (100/37 bp after 10 mins upright...although in 20 yrs I've never fainted once), I have to recline or lay down much of the day, very severe sleep dep, etc etc. However, I'm inspired to do things, even for 15 minutes, to remind me of my old vibrancy and joy. I recently got on a horse for 15 minutes and it just thrilled me. I'm not easily finding much info on the safety of Scuba diving and severe cfs (those of us perhaps with strong metabolic/mitochrondrial malfunction). Apart from the obvious (fatigue/exhaustion!) anyone know of safety/studies, or contraindications for us diving? I'm concerned about with our mitchondrial/metabolism issues we might not get rid of the excess nitrogen absorbed when breathing compressed air and could be at more risk for the bends or other things.

I think it's possible that under the right conditions (boat/drift diving in warm water) my fatigue may not be an issue in the weightless environment of scuba, and if someone else helped with the gear, but I would be happy just to breathe underwater in a swimming pool to remember the old me, and have been looking into a "refersher Scuba course" where they do just that (ie - pool only). Several instructors told me that if a doctor clears me, he would help me to achieve this or even to create a specialized experience just for me to do this. But I don't believe my doc knows anything about the mitochondrial issues we PCFS probably have. Can anyone shed some light? Got any scuba/cfs studies? Do u scuba?

 

[Wendy B.]

I've often found those severity scales a bit difficult to fit into.For example, I fit into the 20% category with dr. Myhill's scale with many features, yet rate worse than that with some of her examples, and yet I am freuqently out of the house (via someone else who drives me). In her scale, I have mod. to severe symptoms at rest. I'm unable to perform strenuous activity (or if I do, it's for two minutes or so), I struggle to or can't watch television much of the time, I cannot concentrate for 15 minutes at a time usually (cannot do an hour as suggested in the 20% range), my overall activity is well below the 30-50% of expected, and yet I am often out of the house. I mean it's difficult for me to hold a magazine or book to read it because of hte exhaustion in my arms, yet I can walk around a store for 15 minutes if distracted, so long as I can go be horizontal or recline in the car afteward, and much of the day. I do things that are easy on the senses like ride in the car and do mindless things like go to the park. I've become skilled at finding idocyncracies to this strange situation of "some ability here but zero here".

...from Dr. Myhill's site:
"20%: Moderate to severe symptoms at rest. Unable to perform strenuous activity. Overall activity 30-50% of expected. Unable to leave house except rarely. Confined to bed most of day. Unable to concentrate for more than 1 hour a day"

 

[Snowdrop]

Hi @Wendy

No I don't scuba dive (except once long ago).
I understand completely the deep desire to try and continue to do things that once brought joy.

I'm confused though as to how something like what you describe can even be accomplished by a severe sufferer.
Not only the actual doing (diving) but getting there and back as well as being prepped etc.

Just read your next post.
How do you feel after horseback riding? Is this something that is manageable for you?

Maybe you'll find someone with a similar pattern here but I would tend to think that many severe sufferers probably also are people with limited financial means.

 

[SickOfSickness]

Cheney said 80-90% of his patients have PFO! He admits he sees the sicker patients. http://www.medicalinsider.com/cardiac1.html#pfo

 

[Sushi]

@Wendy B.

My autonomic specialist used to be an avid scuba diver but then he developed POTS and no long was able to dive. As I remember, (a very faulty mechanism ) one of the big problems was disorientation, aside from lacking energy.

Sushi

 

[Jarod]

@Wendy B.

I guess I'm still a 2 physically, but I used to be a zero for a bit.

When I was about a 2-3 physically, I was afraid to even fly anywhere out of fear I wouldn't make it or would get lost. Well stupid me hopped on a plane and flew to mexico. I found one those all inclusive resorts with snorkeling out back quite helpful for short little swims in the warm salt water. I would swim once or twice a day then nap on the beach. Best therapy ever for me.

However, I get more the mental stuff than the physical stuff some people have where they can't move or lift their arms.

Anyways. Miss mountain biking too. Not the rock climbing though. Repelling off a 80 foot cliff is not my idea of a good time with pots. Nor looking down when climbing back up that rock face.

Next life I'm thinking about trying some wingsuit flying.

 

[Wendy B.]

Cheney said 80-90% of his patients have PFO! He admits he sees the sicker patients. http://www.medicalinsider.com/cardiac1.html#pfo

Wow, did not know this. (only read a bit)...Will read more soon. Thank you!

 

[Wendy B.]

Snowdrop, I'm not in a position medically or financially to get on an airplane right now and go tropical diving, but I was wondering if the weightlessness might make it a possibility for the future. I might have been able to before a severe set back from a pharmaceutical reaction. With more healing, maybe I could again. I used to dive 20 yrs ago so the muscle memory of it is there. With drift diving, you literally just float downstream and get picked up at the end. I like to dream and you never know what could happen in the future, but that's not my focus. I'm really only interested right now in getting in a pool with an instructor and breathing with Scuba for a short bit - to remember the old me.

The horse riding was thrilling, but probably too "upright". I can sometimes manifest some energy for a short bit, but once the activity becomes familiar, severe fatigue takes over.

I've been really depressed with my condition and looking for perks to help me. My sleep is totally horrible after the pharmaceutical reaction (Ativan) and my distress level is very high. Experiences with a lot of endorphins really helps me to keep my hope up.

Jarod, very cool about the snorkeling trip. Jarod, what do you do now for fun if you don't mind me asking.

 

[Wendy B.]

yipes so unless my docs are scuba divers, looks like the only way i might be able to confirm the safety of diving/breathing compressed air at depth with our metabolic issues is thru San Diego Hyperbarics...A dive physical for special conditions is $107. OUCH. Being disabled is expensive except rarely...I am thankful for the reduced parking costs on the street. I'll report back after my next doc appts in the next month

 

[Butydoc]

yipes so unless my docs are scuba divers, looks like the only way i might be able to confirm the safety of diving/breathing compressed air at depth with our metabolic issues is thru San Diego Hyperbarics...A dive physical for special conditions is $107. OUCH. Being disabled is expensive except rarely...I am thankful for the reduced parking costs on the street. I'll report back after my next doc appts in the next month

Hi Wendy,

I've been a diver for the past 45 years. I didn't find any problems with breathing compressed air to a depth of 110 feet. I've done repetitive dives over a week averaging 2 dives a day. My biggest problem was putting on the gear and getting in and out of the water. I found skin diving to require much less energy. You might want to consider skin diving on shallow reefs in a tropical environment where the water is warm.

Best,
Gary

 

[Wendy B.]

ah, great, real life experience! Gary, how severe is ur cfs? Do u have the exercise intolerance? are you a doc, butydoc?

 

[Butydoc]

ah, great, real life experience! Gary, how severe is ur cfs? Do u have the exercise intolerance? are you a doc, butydoc?

I am a doc and do have exercise intolerance. I was bed bound for a while and fluctuated after treatment with anti-virals. I was a member of a dive medicine group for years. I started diving at the age of 16. Those were the days before BC vest. I never seemed to have a problem with scuba diving other than the exertion of putting my gear on and off and the time changes from some of the exotic dive spots. Presently I'm doing fairly well after another round of treatment, but had to retire because of the demands of a surgical practice. I personally found skin diving much less taxing.

Best,
Gary

 

[Wendy B.]

Hi there, thanks for your response. Gary, do you know of any literature about cfs and diving by chance? Your personal experience is the first I've come across.

You mentioned you only had trouble putting on your gear, but not the actual diving. I'm guessing your exercise intolerance was not so bad while u were diving if diving did not make you tired. Could you share a bit more? Like how far could you walk during that time?

I actually went skin diving/ snorkeling on a trip to Hawaii in 2002 before this relapse and found the light swimming and fin-kicking tiring. I'm imagining that if I could dive again, it would only be drift diving where limited exertion was required.

Thanks again for sharing your experience.

 

[SOC]

@Wendy B.

Exercise intolerance, which is a symptom of multiple conditions, and PEM, which appears to be unique to ME/CFS, are two different things. While there is unlikely to be any information about diving related to PEM, you might have some luck investigating exercise intolerance as it relates to diving. Many more people have exercise intolerance due to cardiac and other conditions, than have PEM. I'd suggest you look for information about diving with exercise intolerance. For example, I got a number of hits searching "exercise intolerance scuba", quite a few from a place called scubaboard.com.

Whether diving would cause PEM is an entirely different question. Since PEM can be caused by activities as basic as activities of daily living for some patients, I imagine it's quite possible to PEM yourself diving no matter how careful you are if your condition is bad enough.

Have you done a CPET test to determine your AT for pacing? Once you know your AT, you could wear a HR monitor (some are water-safe) to pace yourself while diving to avoid PEM. Or try to, anyway.

 

[Wendy B.]

Hi again. I'm not really that concerned with PEM...that seems like something I can test on my own with trial and error i guess. I did try at one point to do the two day cardiac test supported by Staci Stevens, but San Diego Cardiology Center would not do it as they were not familiar with it. And it costs $2k to go to a center like Staci's. However, that's not quite as critical to me.

My concern is more related to whether, with our metabolic abnormalities, we are at greater risk for complications. The scuba instructors I have talked to said it was possible I could do drift diving, even when i told them it was hard for me to even swim across the pool two laps. Like you, someone would have to help me put equipment on. Of course the instructors need a medical clearance from a doc though so i have to find that. My concern is that we have abnormalities (Other than excercise intolerance or PEM) that might contraindicate diving. For example, with our slower mitochondrial function, would we be offgasing compressed nitrogen properly and timely, so as to avoid decompression sickness, even on a shallow recreational dive? Or other questions like, With low blood pressure, would this cause a problem?

 

[Sushi]

...
My concern is more related to whether, with our metabolic abnormalities, we are at greater risk for complications.... My concern is that we have abnormalities (Other than excercise intolerance or PEM) that might contraindicate diving. For example, with our slower mitochondrial function, would we be offgasing compressed nitrogen properly and timely, so as to avoid decompression sickness, even on a shallow recreational dive? Or other questions like, With low blood pressure, would this cause a problem?

As I mentioned in this post, my autonomic specialist (a diver) did feel that there were more risks because of metabolic abnormalities. Of course those would vary from patient to patient.

I used to snorkel in the winter (after I was ill) and, like Gary, the hardest part was getting in and out of winter wetsuit gear. I could just drift along with minimal kicking during the actual snorkeling part.

Sushi

 

[Butydoc]

Hi again. I'm not really that concerned with PEM...that seems like something I can test on my own with trial and error i guess. I did try at one point to do the two day cardiac test supported by Staci Stevens, but San Diego Cardiology Center would not do it as they were not familiar with it. And it costs $2k to go to a center like Staci's. However, that's not quite as critical to me.

My concern is more related to whether, with our metabolic abnormalities, we are at greater risk for complications. The scuba instructors I have talked to said it was possible I could do drift diving, even when i told them it was hard for me to even swim across the pool two laps. Like you, someone would have to help me put equipment on. Of course the instructors need a medical clearance from a doc though so i have to find that. My concern is that we have abnormalities (Other than excercise intolerance or PEM) that might contraindicate diving. For example, with our slower mitochondrial function, would we be offgasing compressed nitrogen properly and timely, so as to avoid decompression sickness, even on a shallow recreational dive? Or other questions like, With low blood pressure, would this cause a problem?

Hi Wendy,

One of the doctors I've worked with at my hospital is the head of hyperbaric medicine and has trained naval seals for the past 25 years. He is an expert about all maters dealing with dive medicine and has authored a book about diving. If you pm me, I'll give you his name and number at the hospital. Just mention my name and I'm sure he will be able to help you with your questions.

Best,
Gary

 

[Wendy B.]

Sushi, thanks for the response. I did get that your autonomic specialist had to quit Scuba due to his POTS and disorientation, but thought his decision was more based on his personal condition than an understanding that it would be dangerous for anyone w/CFS.

Gary, I PM'd you, thank you so much!

Scuba seems to be a gray area with much unknown in relation to cfs. I'll keep investigating, if nothing more, out of curiosity, and to dream of possible better days.