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Hello

My wife has limited scleroderma (RP, intestinal motility and reflux). Her 1/2 aunt died of systemic scleroderma. Another 1/2 aunt and her grandfather on that side had limited forms of the disease. I am a medical doctor.

 

As a present, I have been considering building a sauna in our home to make the winter easier for her. However I get conflicting advice as to whether this is a good idea. In fact the opinions range from "excellent" to "absolutely not". The "excellent" came from a medical expert on scleroderma (combined rheumatology AND dermatology specialist) but she also tells me that she does not have clinical experience with patients using saunas. That is because we live in California.

 

Although our scientific training is a vital foundation, clinical experience is most important and that comes from patients.

 

If any of you have any experiences on this matter, I would be most grateful to learn what they are.

Thanks

Michael Carlston, MD

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Sorry to hear your wife has SSc but I'm sure someone on here will be able to help.

 

I have the limited form and the same problems has your wife along with a few other things. I have not used a sauna but know that when I used the hydrotherapy pool my circulation seemed so much better. I actually felt warm and comfortable since it was for my joint and muscle issues and the secondary effect was to help with my circulation but as soon as I'd come out my Raynaud's kicked in again. So it wasn't a lasting effect just made me feel a bit better while in there.

 

Jensue

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I've never been able to stand a sauna for more than a couple of seconds without feeling faint, but I am no expert. I just wanted to say hello and welcome you to the ISN Sclero Forums. I look forward to hearing more from you and your wife.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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I get severe attacks of Raynaud's and increased pain, fatigue, and dizziness caused by temperature extremes, such as saunas, hot tubs, whirlpools, and even hot showers. I don't think that is unusual given the common heart, lung and circulation problems with scleroderma (which can even include reduced ability to sweat, hypohydrosis, which I also have, and which is caused by scleroderma).

 

One thing to consider would be if she were to develop pulmonary hypertension, which is most common in limited scleroderma patients. Here is an article from Mayo Clinic on that: http://www.mayoclinic.com/health/pulmonary...d-home-remedies  Avoid situations that can excessively lower blood pressure. These include sitting in a hot tub or sauna or taking long hot baths or showers. These activities lower your blood pressure and cause fainting or even death.â€

 

Please keep in mind that I have no medical training at all, and correct me whenever I'm wrong. I would venture to say that perhaps some of us might find a sauna more tolerable in the early stages of scleroderma, rather than in the later stages, and benefits might vary widely depending on any person's constellation of symptoms, which is certainly different for all of us.


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hello mcarlston,

 

Welcome and so sorry to hear your wife has scleroderma.

 

Saunas and stepping out of the sauna, or extremes in temperatures make me feel ill also. I too will get faint and my Raynaud's will become very reactive and painful. I also get hives with severe itching and an ill feeling with moist heat or the hot sun since I was a child and do not believe it is related to sclero but since I have been taking plaquenil the hives and itch have subsided.

 

We are all different but Raynaud's seems to be the culprit in preventing most of us from enjoying the mix of hot and cold as I believe the sauna was meant in some way to assist in circulatory health. I live on the east coast and it can get very cold here but even with a heated room to step into after a sauna it is quite cold and produces that unwanted painful temperature change.

 

With gentle thoughts.

 

Judy


A happy heart is good medicine.

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Hey there!

 

I'd consider myself sauna expert, since I live in Finland. We have two saunas in our house actually, and I've used saunas through my whole young life.

 

If your wife has Raynaud's sauna might be a lil problem. In cold the blood vessels get really narrow, but the opposite happens when it's very hot. In sauna my fingers and toes turn amazingly red, I can see my veins dilate and it feels like someone is sticking needles to them. Whether sauna helps or makes sclero worse, I don't know.

 

Because of Raynaud's I do not like going to sauna too often. However, in there your dead skin starts to peel off more than in normal temperatures, and that is usually good for the skin. Here in Finland sauna is usually heated all the way to 80 or 100 degrees, but maybe a little lower temperatures might be good for your wife. :)

 

Emmi

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Thank you all VERY much for sharing your experiences!

 

I believe that there is great wisdom in your comments, especially regarding the individual nature of the response to the sauna process. Although I am in regular contact with many of my Swedish cousins and hoped they might be able to give me some insight, none of them have any experience with scleroderma. Those of you in cooler climates have much greater experience and so I very much appreciate that. Knowing their passion for sauna, when a Finn (such as Emmi) expresses concern about the effects of sauna, it is clear that the only way to learn the effects on my wife is to have my wife test it out. Although that means I lose the fun of the surprise, I think she will benefit much more now from my linking her to this online community forum.

 

Thanks again

Michael Carlston

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mcarlston,

 

Please have your wife come and visit and possibly join our group. I'm sure she would love the support the group provides.

 

With gentle thoughts.

 

Judy


A happy heart is good medicine.

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Hello Michael,

 

I'm in Michigan, and it gets cold often here. I don't know if a sauna "helps" my sclero, but boy I sure look forward to getting into one every time I can. I have diffuse systemic sclero with ILD and of course, Raynaud's. I also have an overlap of rheumatoid arthritis (RA). I've never felt faint or ill after or during a sauna dip. So I guess you're right in assessing that your wife should be the one to tell you if it would do her any good or not.

 

Good Luck!

 

Vee


Happy people don't have the best of everything, they just make the best of everything they have!

 

Warm and Happy to you! Vee

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Hello Michael,

 

What a lovely idea to surprise your wife with a sauna! I am so sorry to hear of her diagnosis. You are so thoughful to inquire if it would be a good idea. Personally speaking, I do not have a sauna but I can say which water temperatures are comfortable for me. I have tried warm water aerobics and the warm water temperature has very relaxing benefits. If I'm exposed to hot water temperatures, this usually leaves my skin dry which then leads to even more itchy skin. I'm diligent about avoiding hot showers and I do keep a good lotion handy especially in the winter months.

 

However, if you can adjust the temperature in the sauna to a comfortable level, I would think your wife would be able to enjoy the relaxing and soothing benefits. You also mentioned building the sauna in your home which is much better for her versus building one outdoors where she would be exposed to the cooler elements. (I'm not sure how cold it gets in California.)

 

Our ISN family is a very supportive group where one can visit, browse or join in at any time. Please do mention our website to your wife and I look forward to hearing how your sauna project transpires.

 

Take care,

Razz


Live well, Laugh often, Love much

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Hi Michael,

 

I'm wondering if it might be prudent for your wife to "try" a sauna. I don't know if it's feasible, at a health club or elsewhere... If she were to benefit...go for it! Yet, if YOU would like one anyway... then what a GREAT way to relax after a hard day!

 

My sister-in-law and brother bought one recently...she has Sarcoidosis and it seems to help HER.

 

It's really hard to know unless a person tries something...how well, or not... something will work.

 

Susie


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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I have scleroderma and lupus overlap. My disease is 75% systemic diffuse scleroderma and about 25% SLE.

 

I have ILD, Raynaud’s (I have sclerodactyly with a skin score of 2+ on my fingers. I can’t make a fist, my fingers and hands are so swollen and the skin is too tight), hypo and hyperpigmentation all over my body, lots of skin involvement, Sjogrens, GERD, microstomia, dysphasia, gastroparesis, liver and heart involvement and a whole lot of joint, ligament, muscle pain, along with other scleroderma “nuisances”. 

 

I have found that saunas are a double edged sword. At first I feel amazing and it takes me about a half an hour to start to have some sort of glistening on my face. It takes a lot for me to sweat - that’s where the problem comes in — I will overheat because I am not cooling of naturally by sweating. Also, my face gets extremely red and takes over an hour to start to look normal again. 

 

I found that my Raynaud’s does best when I take steps to help. I am one to get really bad attacks and to consistently have blue hands and feet that are icy cold. I also lose circulation on my ears and nose which result in ulcers just like the ones on the fingers. This past year my tongue became fully involved—before it would just be the tip that turned white or blue; now the whole thing does within 30 seconds of being outside in the cold months even when I’m bundled up. That being said, I carry  hand warmers everywhere I go, regardless of the temperature. I always have some in my purse, in my locker where I work, and an entire box in my trunk. I also keep gloves in the car and wool socks. Lined boots are great for the feet especially on top of thick wool socks. I buy the long thigh high leg warmers to put over pants when I have to outside. Long puffed coats with lots of layers, thick scarves and hats. Never wear finger gloves. Always buy the mittens. Separating the fingers and toes makes Raynaud’s worse. Believe me. You can also stick the hot hand warmers in the gloves for extra warmth. 

 

Anyhow, I also carry little bouillon cubes or tea bags with me wherever I go. You can always find hot water. At work I also have a “bed buddy” which is a heating pad made of herbs and grains that you heat up by putting in the microwave. It releases moist heat. It works for me when I am in pain and when I am cold. I also have blankets in the car. It is all about preparation.

 

Hope this is of help to someone even though this thread is ancient.

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When it gets cold, I get frostbite in my hands and feet and when it gets hot, I overheat.  I haven't tried a sauna for about 40 years, but this thread has reminded me that I ought to give it a go.

 

Raynaud's seems more about temperature changes than just cold alone.  I can get Raynaud's attacks just from a cloud crossing in front of the sun or a thermal draught on a hot day.

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