My cousin told me about a friend of hers with Raynaud's Syndrome - which I have as a result o SLE, and has gotten considerably worse this year - who wears Heat Bands. They are not available in the US, but the UK had them and they are out of stock. Kindly, anyone out there, who has Raynaud's - have you heard of them and more so - do they work? I ordered a month's supply from Ireland. I live in the US in Florida. We are going on a cruise on Sunday and cruise ships are notorious for freezing people. My hands get white and then purple and numb. My toes as well. At this point, I'll try anything other than pills! I will not take any more oral meds. I've had it with steroids, etc. They worked for me for a few weeks, and then, I was back to where I started. The side effects were horrible. Please - if you've heard of Heat Bands and can tell me if they work for Raynaud's -- please email me! Or post!
Sarah
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tennissenior
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Hi, I have severe raynauds and sle and have tried them but they didn't help me I'm afraid, however we are all different and anything is worth a try. It's miserable when you get cold and then the pain sets in.
Have you spoken to your gp at all about trying something like nifedipine? I used to take it in the early days of raynauds and it did help and got me through some activities that were cold! I used to take a very small does of 5mg twice a day and would only take it a third time if going out at night. I tried the long acting one but had a blood pressure problem with it. It works really well for some people so if you haven't tried it I would definitely ask your doctor. I so understand not wanting to take any more medication and the side effects though.
I have discovered that the key is to try and maintain any heat you already have so I don't wait until I'm cold to heat up because it just doesn't work. Even all the hand and feet warmers won't heat me back up. I use wheat bags a lot but I really have to over cook them to get them to a temperature that makes any difference. I wear gloves and coats before I am even remotely cold and have invested in a very lightweight good quality down jacket that doesn't look too ridiculous in the summer or when I don't take it off indoors.i keep hand warmers (the type that react to the air when you open the packet) in my coat pockets and the sticky foot warmers on every day. They just stick on bottom of your socks and work for up to 8 hours. Happy to let you know the brands if you want to see if you can source them in the US. Wool can be a good fabric as well without being too bulky but warm.
I regularly get skin breakdown and chillblains/small ulcers with raynauds so I do suffer badly so I spend an awful lot of time trying very hard to keep warm
Really hope you find something that works and you have a good time
Thanks so much for your reply - and I am sorry to hear that you have what I have - and it truly sucks! My husband takes nefidepine for high blood pressure. Mine tends to run low at times, so that would not be good for me. I really don't want to take more pills. I'm on Coumadin for life now - blood clots 2 years ago - today! I had to cut out everything I enjoyed - all my veggies. I can't even have a glass of wine as I also have ITP. I used to ski and may have hand warmers somewhere - I'm going to look for them now! I ordered the Heat Bands and I'll let you know when they arrive and if they work. I hate even going to a restaurant because it's not fair to my husband that I have all these issues. I really should live in a bubble! We have a flu epidemic in my community and all over Florida now. I have to worry about that too! I was not permitted to take the flu shot, but it's ineffective anyway. I did get a script for Tamiflu which I am taking with me. However our doctor refused to give one to my husband, and we're hoping, if he gets sick (we'll be with 4000 people), the medical dept on the ship carries it. Happy New Year...and GOOD HEALTH!
You sound like you have so much to cope with,fully understand why you have a strong aversion to anymore medication.
Raynauds is what took me to the dr in the first place. I've had it since my teens but over the last 5 years it has become very severe. I'm in my 40s now so a long time to suffer really. I too used to ski and adored visiting cold climates. unfortunately I doubt I could do that now. I have iv infusions for raynauds and it's helping. I can't even take my children to the swimming pool because of it and I regularly sit in restaurants with my coat on,in fact I kept it on during a recent hospital admission but they are used to me now so stopped asking if I would take it off.
i couldn't have said it better,yes it does suck and it sounds very difficult when you have had to change your life and stop doing things you enjoy.i am just at that point with some recent deteriorating health and it is very difficult to try and accept.
Really hope you have a good time on the cruise and avoid the flu bugs..I had the flu jab this year and am recovering from flu right now..typical as previous years I didn't have the jab so next year I'm avoiding it!
I'm worried about the flu bug and about the Raynaud's. I will be with 4000 passengers. How much of a chance do you think I have to avoid the flu bug? I wasn't allowed to take the flu shot but it's not effective here with the strain in the US. My hematologist was afraid of the repercussions - so no shot - no protection - just pray! Thanks for your good wishes! Good luck to you too - you are much too young to suffer this way. I wasn't diagnosed until age 67. I was in perfect health until one day - WHAM! SLE and all the "goodies" that come with it! I now have ITP, SLE and MDS along with other goodies. I have to keep playing tennis but I'm no longer winning trophies. I am happy I can hit the ball once in a while! Happy New Year.
Have you tried the Raynauds Association website?. They sell items to help with circulation so might include Heat Bands. They also give up to date info on Raynauds treatments which you might find helpful. Severe Raynauds can be treated with an Iloprost Infusion over here. Worth a look!. Hope you avoid the flu and enjoy the Cruise.X
I did try the site but they are presently sold out. I've asked two dodctors for help and all I get is a look! That tells me thereis no help. I'm stuck with yet another piece of misery in my Lupus life!
Iloprost infusion was so painful when i did it that i was almost giving up. The dr had to stop d infusion and i had a plasma exchange. People are different so it might work 4 someonelse
I am in the Uk , and will pop into Boots Pharmacy to ask if they sell them and how much they are. I found the information online, so I know what this is. I have no experience with them , only going to try to find out for you if I can get them for you. HEre is my email address morlobach@yahoo.co.uk
If I can get them I'll contact you directly if you drop me a line. I have Raynaud's as well, but hadn't even heard of these till you mentioned it. It does say on the website they are for this phenomena. heatbands.co.uk
extract: " Welcome to Heatbands™ Hand Warmers, for cold hand sufferers everywhere especially those with Raynaud's and those engaged in sports.........HeatBands™ Hand Warmers promotes a healthy flow of warm blood to the hands and fingers which stops THE COLD, stops THE PAIN and keeps you more able to do things…"
This is only what the company claims, like I said I have no experience with them.
Drop me a line, I will be back this afternoon with information into price and availability.
I am going to a store called Dick's Sporting Goods today before we leave on our cruise. They sell something here in the US called Hot Hands. They are little packets with crystals in them and you kind of "roll them" in your hand, in the bag. I'll try anything!! First thing we do when we board a cruise ship is argue with Passenger Services to turn off the AC in my cabin and let ME adjust my thermostat. It seems to be a huge problem with the new Princess ships. They control everything1 I may even go to the Medical Dept. and have the doctor ask them to do it. I'm fearful of gangrene! Sometimes it feels like I will never be able to feel my fingers again. It always starts with the right middle finger. Thank you for checking the Heant Bands for me! Happy New Year!
Heat bands and heat pads as well as hot water bottles are all very good for keeping you warm but so is having a good hearty breakfast starting with mixed fresh fruit and a drink of fresh orange juice for Vitamin C and also cod liver oil to help bones.
I have never heard of heat bands, but there are a variety of products out there to help with Raynaud's. You can find them at raynauds.org and on Amazon. I am fond of Hot Hands, little packets that heat up once you open them and stay warm for several hours. I wrap my hands around them and put my hands in my pockets. There are also heated gloves and other useful products.
So sorry Tennis... I am starting to wonder if I have raynaud's. I never get the flu shot because I would get it. I get the flu every year, but find if I wash my hands and don't touch my face, lips, eyes or mouth..it can be avoided. I had the swine flu in the middle of the summer 5 or 6 yrs ago. I was in NH on a vacation with my family. I washed my hands like crazy and my husband and two daughters never got it when we were sharing a hotel room. It is possible to not get. have fun on the cruise.....I went hiking with my husband in the cold yesterday and it took me all day, a hot shower, 3 cups of hot tea and sitting by our wood stove to warm up. I use to get cold fingers and toes a lot as a child, but finding it really hard to get warm (though I still get hot flashes here and there even though I am done with menopause).... If you don't mind me asking, how do you get tested for raynaud's?
I don't think there is a specific test. Trust me - WE know we have it! It started a while back with me even before my SLE diagnosis. I noticed my toes were starting to get numb. As time went on, it was my middle finger. Now it starts with that finger, and all the rest of them. If I turn my hands over palms up, they all look purple. My labs come back with "speckles" with the ANA, etc. It shows I have all of the diseases connected to connective tissue - Lupus, Sjogren's and Scleroderma. I developed a "patch" on my face that many dermatologists looked at but did not know why it was there. I do -- Scleroderma. I've been using Aquaphor as my "night creme" and the spot is still there and pinkish, but not scaly as it was in the beginning. I went thru meno when I was in myh mid-40's, so it's been a while. I take Prempro to avoid osteo and it's worked for me, for years. My bone density was fine! My Mom had severe osteo plus a loar of other diseases, as did my Dad. See - the way to stay healthy is to choose healthy parents! Unfortunately, that was not in MY cards! Everything they had - I now have!
So sorry Tennis...I believe it is genetics as well. My mom died from colitis at 48 suddenly, became septic..liver went...my dad made it to 76 (which is what I hope for) with many symptoms of mild lupus, raynaud's and died from a clot a week after appendicitis surgery where they also found peritonitis. There go, my intestinal problems. I also have marks on my face. I thought it was because of sun damage, but reading here it might not be. I tried to get one rather large spot off with dry ice. Didn't work. Lightened it up a little, but did not remove it entirely. I have people look at me strange a lot because of it. It is what it is. I can't do much more than I tried. I wish people would be less vain. Especially here in Americas. A friend of my husbands was going on about how nice his sisters face and skin was over holidays with me standing in the conversation. It certainly hurt me a little, but this is who I am. My sister wants me to use makeup to cover it up. Oh well.
It is quite unfortunate to be in a disease because of our genetics. I am hoping modern medicine will catch up, and we can manage with the symptoms with as much grace as we can muster. I feel actually blessed that it seems to be mild and might not damage my organs too much( I already have scarred kidneys, trouble with my lungs, etc)..one day at a time...enjoy each day with family. And have fun! That is one of my New Years resolutions for 2015. More fun...each and every day! Take care
I know about everything you wrote...I've had off-kidney labs; UTI's, eye infections, 4 eye surgeries; I use Spiriva for COPD (my Mom had it); I take Synthroid for thyroid disease (Mom had that too), and Dad died from complications of Lupus at age 67 (it hit his heart and kidneys). I'm passed that by a few years. I had blood clots twice in the same leg, thus, being on Coumadin for life, among other meds. That's why I don't want to take any more meds. I've had two blood transfusions because my doctor failed to check my B12 level and didn't catch the pernicious anemia, and shot me full of Procrit, which caused the clots - December 28, 2012-January 2, 2013. He said "whoops!" I now take a B12 500 mg. and I am only slightly anemic. I've managed to live 2 more years after the blood clots - so I guess I am doing well, given all the diseases and symptoms I deal with on a daily basis. Try the Aquaphor on your face every night and see if it works. I tried Kelacote and it made it worse. No one promised us life would be easy. Are these truly my "golden years?" Somehow - I think I'm not exactly 14 kt! Happy New Year to you too! Keep on trucking!
Thanks tennis...will try aquaphor....I take 5000 iu of b12 daily...I Wonder if that is too much. I think you piss vit b out. (Sorry) ....I am hoping to have many more years on this planet. I want to be around for my daughters who are only 13 and 15.....I don't take any meds. I take a Natto k sticky blood preventer enzyme daily just in case I am a clotter. No side effects so far, been on for 10 mos. The blood test I just had says no, but two of my brothers have it and are on Coumadin. Can't hurt. Lets laugh more, and enjoy life! Get out there and experience life! Healthier New Year!!!!
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