Help for Scleroderma/Raynaud's - SailNet Community
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post #1 of 13 Old 12-03-2010 Thread Starter
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Help for Scleroderma/Raynaud's

I have owned a 30' steel sailboat for some years and enjoy cruising around my home state of Tasmania, approaching retiring age I was looking forward to venturing further afield. Recently I was diagnosed with scleroderma which had led to the sudden bouts of Raynaud's (freezing hands and fingers) that I was experiencing.
The doctors say I'll have to give up both my sailing and my current occupation (metal machinist in typically Australian unheated workshops) or risk loosing fingers.
The loss of income will be a blow but the thought of giving up my boat is devastating. There must be some way to reliably keep my core temperature and hands warm whilst on deck and still manage to sail. Is there anyone out there with a similar problem and have you been able to beat it?

Cheers
Cordwainer
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post #2 of 13 Old 12-03-2010
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Ooh, that sounds like a bad break! Assuming that you're looking for an answer something other than "move your boat to a warmer latitude?" Maybe battery- or electric-powered heated gloves like these: Gerbing's Heated Clothing // Heated Gloves or Heated Gloves - heated-gloves.com or http://www.brookstone.com/heated-gloves-and-insoles_heated-gloves-liners.html?bkeid=search|google|bidword|heated_glo ves&gclid=CNPksrbZ0aUCFRZ-5QodF33vmg
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post #3 of 13 Old 12-03-2010
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Cordwainer—

Try taking L-Arginine amino acid supplements. A friend of mine was told to take them for her Raynaud's Syndrome. Magnesium and Vitamin E were also suggested.

Sailingdog

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post #4 of 13 Old 12-06-2010 Thread Starter
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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
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post #5 of 13 Old 12-30-2010
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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
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post #6 of 13 Old 01-01-2011 Thread Starter
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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.
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post #7 of 13 Old 01-01-2011
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Prayers

Will keep you in my prayers.
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post #8 of 13 Old 01-01-2011
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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
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post #9 of 13 Old 01-01-2011
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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.
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post #10 of 13 Old 01-02-2011
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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
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