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Go Back   SailNet Community > Out There > Cruising & Liveaboard Forum > Living Aboard > Help for Scleroderma/Raynaud's
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Thread: Help for Scleroderma/Raynaud's Reply to Thread
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Topic Review (Newest First)
01-04-2011 04:03 PM
hellosailor Cordwainer, I would suggest that keeping warm is literally a matter of life and death for many sports and pursuits, and that the doc who said "give up sailing" needs to get his head out of his, ahem.

Anyone who pursues winter sports can tell you that hypothermia and frostbite can kill. And, how to avoid them by eating properly, dressing properly, etc.

A wool watch cat to keep the head warm and preserve body heat. Wool or silk undercloths to keep the core warm and dry, and allow heat to get out to the limbs. And here in the US, Graber? Grabber? brand heat packs, which generate heat when exposed to air. They make a wide range now, including packs that slip into your gloves and boots, packs that stick to your clothes, great way to supplement body heat when you need it. Then there are also electric socks and gloves and vests, often sold to the snow ski and motorcycling markets.

Give up sailing? Hell no, just sail warm and dry. That's easily possible.
01-04-2011 12:27 PM
bobmcgov Hi, Cordwainer -- sorry to hear about your Raynauds. Peripheral circulation problems can be downright painful. Several rock climbers I know -- mostly women -- have faced similar issues: cold stone will drain the heat right out of your fingers. Some found relief thru steroidal treatments -- the capillary clamp-down seems to be hormonally triggered -- and thru meditation. That latter sounds goofy, but Raynauds does correlate with limbic responses to stress or anxiety, and meditation has been shown to reduce stress hormones in the blood. So if you have an interest in that line, a regimen of yoga or meditation or tai chi or deep breathing exercises may yield surprising results.

Other climbers have found hot-plunge therapy beneficial in the short- to medium-term. They basically stick their hands (& or feet) into water heated right to the edge of pain. Start at 'very warm' and ratchet up the water temps over time. After a few minutes, pull out your digits, let em cool to room temp, and plunge em again. The intent is to 'teach' your blood vessels to dilate by engorging them with blood over and over. Some think this cycling encourages greater elasticity in the vessel walls. It definitely increases general blood flow to the tissues in your hands and feet, which can accelerate healing and cause more capillaries to grow. Your hands should look bright pink when you pull them out of the hot water -- a sign blood flow has been amped up. Google "Murray Hamlet Raynaud's". And here's a couple informed articles:

Beyond cold feet: painfully cold fingers and toes may signal Raynaud's disease | Vegetarian Times | Find Articles at BNET

Peripheral circulation and cold adaptation in Raynaud's phenomenon - Medical Anthropology | Townsend Letter for Doctors and Patients | Find Articles at BNET

Climbers with tendinitis problems do something similar but alternate hot plunges with ice baths -- again, the idea is to increase blood flow by repeatedly 'calling' for it via temperature variation. Probably the ice baths are not such a good idea w/ Raynauds. Usual advice: ask a doctor if they foresee any harm from experimenting with these techniques before proceeding. Best of luck!
01-03-2011 08:32 AM
Jeff_H My mom had Reynauds for the last 34 years of her life. Ten years of this period she lived on boats. While she was careful to avoid cold, she lived a pretty normal life otherwise. On the other hand she had friends with Reynauds who were going downhill much more rapidly than she. I don't know whether you are a smoker but smoking can greatly accelerate the decline. Staying out of the cold obviously makes a big difference as well.

Jeff
01-02-2011 12:32 PM
travlineasy Unfortunately, scleroderma is not easily diagnosed. And, more often than not it is overlooked in it's early stages. The diagnostic process may require consultation with rheumatologists (arthritis specialists), and/or dermatologists (skin specialists) and require various blood tests, a process that could take months.

Is she does indeed have scleroderma, keep in mind that she would be very your for symptoms to appear. In some instances, localized scleroderma, which most often effects the extremities, primarily the hands, can be readily treated with a combination of drugs and some minor lifestyle changes, such as wearing gloves and keeping the arms covered to protect them from sunlight damage.

Most major medical centers have physicians that specialize in scleroderma, but you will have to get a referral from your primary doctor in order to see them. This would be an important first step in the process.

Good Luck,

Gary
01-02-2011 12:19 AM
Dulcitea My heart goes out to you. I would be devistated if I had to give up sailing.

My daughter may or may not have scleroderma. She definitely has Raynaud's. I feel so helpless. It isn't suppose to be this way. She is only 22. I'm the one who should get it.

I know you wrote for advice, but now I am asking you for help. How long and how many doctors did it take for you to get your diagnosis? The not knowing is very stressful for her.

Thanks and God bless.
01-01-2011 08:33 PM
travlineasy There is one test that you should have done if not already--Vitimin D blood level. This is among the most overlooked things in modern medicine, and not many physicians are aware of its importance. The latest school of thought is that your blood level should be 50. Anything less than 30 and your risk factors for a host of maladies increases dramatically. I can attest to this from my personal experience.

As a musical entertainer who plays arranger keyboard and sings, there are two aspects of my health that I religiously guard--my hands and my voice. I've always been blessed with a quality singing and speaking voice. and until about 6 years ago my hands were in perfect physical condition. It was then that I began developing splits and cracks along the edges of the nails, which later involved larger areas that would not heal. Similar problems also developed on my legs and buttocks. After visiting several highly rated dermatologists and two years of steroidal treatments, I was referred to internists, infectious disease specialists, and finally a hand surgeon. The hand surgeon said if the problems persisted and the condition of my fingertips worsened, he would likely have to amputate the ends of at least four fingers. It was a pretty scary situation. I would have lost much of my ability to earn a living and my income would drop like a stone.

After 14 doctors, more than $7,000 out of pocket expense that was not covered by insurance, medicare, etc.., I was at my wits end. Then, one night, while performing at a retirement community near my home, one of the residents asked why I was wearing a white cotton glove on my right hand. At the time there was blood seeping through the glove. I told him what I was going though, and he asked to look at my hand. When I showed him he said "My wife had a similar situation, she took vitamin D and within three to four weeks her hands were healed.

We've all heard stories like his, and usually pay no attention to them, figuring it was coincidental. My loving wife of nearly a half-century finally convinced my to give it a try. I began by taking 3,000 IU daily and within three weeks my hands were nearly healed. I had my blood levels tested and the results were astounding. Even after taking 3,000 IU daily, the level was only 32. I increased the dosage to 5,000 IU daily and the level is now 49. That was a year ago and my hands have been clear ever since. Additionally, all of the other lesions are gone as well. Ironically, two of the physicians that were treating me with increasingly higher levels of steroids DO NOT believe that vitamin D played any role in the cure.

A bit of internet research revealed that most of do not have adequate levels of vitamin D in our system. In most instances we try to protect ourself from any and all sun exposure, fearing various skin cancers. In reality, unless you are burnt and blistered your chances of contracting skin cancer from sunlight exposure are pretty slim.

The next thing I discovered is that even with lots of sunlight exposure, as we age we tend to loose our ability to absorb vitamin D from sunlight. Our skin fails to process sunlight the way it did when we were young and active. If you have not done so, I would have that vitamin D level checked ASAP. If it's low, pick up some 5,000 IU gel-caps and begin a daily regiment for at least three months, then have the blood level checked again. In your case, sunlight exposure is something you must avoid as much as possible, so this simple blood test could be extremely important.

Good luck,

Gary
01-01-2011 08:03 PM
omaho5
Prayers

Will keep you in my prayers.
01-01-2011 05:33 PM
cordwainer Thanks Gary,
Yes my doctor has recently recommended pretty much the same, including not giving up sailing. So things are looking much better.
Cheers, Cordwainer.
12-30-2010 11:46 AM
travlineasy It has been decades since I worked in medicine, but from what I recall about scleroderma much of your physical activity limitations will depend upon the degree of the disease, and the progression rate. There are some effective treatments for mild to moderate cases of scleroderma, but the effectiveness of those treatments vary considerably between individual cases. If you are not in the progressive stage, and otherwise in reasonably good physical condition, wearing warm clothing, batter-powered gloves and socks, and a hat will all be helpful when the weather is relatively cool. When the weather is warm, be sure to protect your skin as much as possible by wearing long-sleeve shirts, long trousers, white cotton gloves and a wide-brimmed hat. Sunblock will help to some degree, but it's not as effective as the clothing.

I would also recommend taking someone with you that knows how to handle the boat singlehandedly. This is important. If you feel weak, tired or worn out, you can retire to the boat's cabin, relax. warm up and enjoy the remainder of the trip while your sailing partner mans the helm and sails.

Above all, don't take risks. Be sure to take the prescribed medications at the prescribed times--THIS IS VERY IMPORTANT! The medications will not cure the malady, but they can help manage it, and that's the best you can hope for.

Hope this helps,

Gary
12-06-2010 01:49 AM
cordwainer Thanks Eryka & Sailingdog,
Am already into the oils which helps with other symtoms. Perhaps I should have phrased my question differently. Is there anyone out there with scleroderma who still sails?

Cheers
Cordwainer
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