Has anybody tried to control their Scleroderma and Raynauds symptoms via their diet and exercise and without any medication?

[Raynauds123]

I have recently been diagnosed with Scleroderma and gave raynauds for over 20 years now. I get really bad eczema flare ups which I believe are related to certain foods, which I have now eliminated. I’m getting a lot of skin pigmentation and it’s really itchy. I’m using emollient creams and bath stuff. I have been on an AIP diet for a month now and am slowly introducing foods back in. Has anybody managed to control their symptoms via diet, relaxation and exercise alone?

[SylvieJ]

Hi, Im Sylvie and I havent been on this site for very long. I have tried controlling my Raynauds and my Sjogren's without drugs. For some reason I don't have a good time with drugs. I have been keeping a chart which my hubby does for me on exel. It is very much the same as keeping a diary only its about keeping a look out for trigger foods. Like yourself I have to constantly use body lotions. I found the best one for me and it worked better than any prescription emoliant, is Aveeno for dry skin. The almond one is nice also but it doesnt do the trick like the dry skin lotion. They do other products for people with problem skin. I have tried Ginko but after reading a help page on this site I found I wasn't taking enough. I have unwittingly been using the right things that help without knowing it. I love ginger and I hate water but there is a ginger cordial that is really good. I use some of the recipes from Michael Mosleys diet book which have ginger in and the use of some spices like cayene pepper and I do like to add a tiny pinch of chilli powder into a hot chocolate. Yesterday I ordered some hot rox for the winter and Ive no idea if its going to work or not. I am willing to let you know how it goes. It's been trial and error, I take vitamin supplements that have vitamin C and fish oils. I find that even one glass of alcohol now triggers both my conditions off. It's all trial and error and what works for one person doesnt necessarily work for all. You mentioned pigmentations on your skin, I believe that Boots have their No7 range and a product that helps with that, I have no idea if it works as I haven't tried it but it might be worth going along to chat to someone about it in their store. I just read through my reply, I assure you I am not a sales person for any of the things Ive mentioned.

I do hope you find some things that work, but I did find that SRUK have some really good information and the best I have come across so far.

[Raynauds123 in reply to SylvieJ]

Thank you so much, i will definitely look into the Boots No 7 cream. I have been using Lush's Dream Cream and touch wood, it is helping a lot. I'm going to start on the fish oils too. I did the AIP diet for just over a month and found it really helped. I'm trying to continue as much as i can eating healthier and removing nightshade foods from my diet.

[joolee1]

Hi Raynauds123, I am going to start the AIP diet next month as soon as my kids (hopefully) get to go back to their colleges. I have confirmed CREST, am certain I have Sjogren's, and also itchy red patches on my face and neck. I've had those for years. Docs have said they're 'seasonal allergies,' 'contact dermatitis,' or 'unrelated.' I disagree on all of those. Even my gynie said they must be related to whatever is going on with my AI system. Also lots of joint and muscle pain and stiffness. Rheumy thinks that's osteoarthritis, which I also kind of disagree with. Seems like it would also tie it to CREST and Sjogren's. Anyway, I haven't started any meds. I'd much rather try a food-based approach. I gave up gluten months ago. Hasn't cleared up my pain or skin, but I love feeling less bloated all the time. I've done a few rounds of Whole 30 over the last couple of years. Difficult because of so much cooking, but you do feel better. AIP diet is even more restrictive, so it'll be easier once it's just husband and me at home. Good luck to you. Report back. I'd love to hear how it goes for you.

[Raynauds123 in reply to joolee1]

Hi, I did the AIP diet for just over a month and found the first week or so really hard, especially as I am vegetarian. I found it has really helped though and i am trying to continue the best i can and eat much healthier. Did you try the diet? If so, how did you find it?

[Hidden]

Hi. We have been using the AIP diet for my son who has mixed connective tissue disease. He is 16 now and we started to change his diet when he was 12. He’s done really well and managed to come off all medication. His gut issues totally resolved. He’s also taking quite a few supplements and we discovered a mould problem in our house which we have tackled and I think that has made a big difference too. We have found food reintroductions tricky - you have to be very careful and reintroduce slowly to prevent flare ups. We’ve successfully reintroduced eggs, almonds, pecans, cocoa, and recently GF porridge oats. He’s been off all meds for 3 years now. Hope this helps. X

[Raynauds123 in reply to Hidden]

Thank you, that does help. I've found the diet to really help and it has cleared up some of my excema etc. Does your son take any supplements?

[Hidden in reply to Raynauds123]

Yes he takes quite a few. Supplements are very individual though based on circumstances and results of tests etc. Currently he takes probiotics, magnesium, omega 3, a multivitamin, milk thistle, alpha lipoic acid, NAC, L glutamine. He has taken vit C, caprylic acid before too, I would suggest finding a good nutritionist or functional medicine practitioner in your area to help guide you to find the right supplements for your particular circumstances. Hope this helps. X

[Raynauds123 in reply to Hidden]

Perfect, thank you x

[NewbieAP]

I’ll start by saying I don’t have confirmed Scleroderma, just the CREST antibody and Raynaud’s (and possible mild Crohns with IBS; the GI/ IBD Specialist is watching and waiting). Two years ago I started an anti-inflammatory diet for IBD to hopefully keep my GI problems from getting worse. To my surprise, they improved drastically and I felt more energetic, alert, and generally better. I still have mild Raynaud’s, but was able to resume running after starting the diet (I had run cross country in high school and university, but it triggered severe GI symptoms in the last several years) and have been running/ exercising (Midwest US winters send me indoors) since then. Following this diet (which aims to starve bad gut bacteria and feed the good and to eliminate pro-inflammatory foods/ ingredients and include anti-inflammatory foods) and doing research has made me believe that in addition to genetics, autoimmune conditions and their symptoms are strongly linked to pro-inflammatory diets and microbiome problems. I think that the severity of many autoimmune (I.e. inflammatory) conditions can be lessened through following an anti-inflammatory diet (Mediterranean or anti-inflammatory, like the UMass IBD-AID, which I follow), regular exercise, relaxation techniques, adequate sleep, and addressing anxiety and depression (through medication if needed; SSRIs have strong anti-inflammatory effects).

Finally, regarding Reynolds. It is possible to address Reynolds there’s a thing called Raynaud’s classical conditioning. It’s not widely known about, but has been studied and found to be effective, even for several years. I did it on my own at home this past fall and my symptoms were less severe over the winter.

[Raynauds123 in reply to NewbieAP]

Hi, thank you for the reply. Can i ask how you did the Raynauds conditioning please?

[NewbieAP in reply to Raynauds123]

If you Google “classical conditioning Raynaud’s” on Raynauds.org, there’s an article describing the method.

Btw, Apparently it’s been used by the military with divers for a long time!

[Raynauds123 in reply to NewbieAP]

Perfect, thank you

[Missycat2020]

Hi, I haven't been formally diagnosed yet as i couldn't get an appointment with a scleroderma specialist until September but everything I have points to it. 7 months ago I couldn't open a jar or bottle, couldn't hold a knife to cut vegetables, my hands and joints were painful all the time especially at night and my skin was getting tighter quite rapidly all over. I started doing 2 or 3 hour-long sessions a week (with a trainer) of mixed aerobic and weights training, with lots of stretching and really working on the forearms, wrists, fingers and shoulders for strength and flexibility. Plus lots of squats and lunges for the legs & core (aargh!). And 20 - 30 min sessions on the cross trainer on other days. It has made a massive positive difference. Diet wise I stopped eating dairy products and red meat (but do eat eggs and fish). This helped a lot, but the main secret weapon, i am convinced, is moringa powder. I mix a big heaped teaspoon of it into a smoothie or cereal every morning with chia seeds, pumpkin seeds, sunflower seeds, baobob powder and i swear it makes all the difference. Moringa is a natural superfood and seems to help with all sorts of health issues. Lately it's been avocado season (I live in Kenya) and i think having a half or full avocado almost daily has been helping quite a bit with my skin and general flexibility also. I do take vitamin C and D supplements too, when i remember.

Who knows...but I hope this is helpful somehow. Take care!

[Raynauds123 in reply to Missycat2020]

Thank you for the reply, i will definitely look into the moringa powder and increase my avocado intake.

[Jen3131]

The International Scleroderma/Raynauds virtual conference was held recently. One of the presentations was given by a nutritionist specialist who works with patients with scleroderma. It was really useful and certainly one diet does not fit all individuals. It’s well worth watching.

[Raynauds123]

Thank you, I will definitely watch it, anything to help! Doyou have a link to the page please? I tried to google it, but can't seem to find it.