Hello everyone I have lupus, Sjögren’s syndrome and RA. I was diagnosed many years ago. My daughter now age 21 just got diagnosed with primary Raynauds disease. So far the rheumatologist doesn’t think she has lupus but of course I’m worried about that also. I went through several years of different symptoms and tests before they realized I didn’t just have RA but I also have lupus along with Sjögren’s syndrome. So my friends my question is what exactly is Raynauds and how does it make you feel? What are some things my daughter can do to warm up her hands and feet. It was 95 degrees out today were we live and her feet were freezing cold and sweaty even with having her thick layers of socks on. Her hands are always sweaty but she seems to be able to warm them up easier. We have got her these really thick socks and gloves to wear especially when it’s cold out. She can barely stay in the grocery store at times she gets so cold. I would really love to have some advice on questions for her rheumy and how to warm her up. Does this also affect your mood because she has been extremely moody. Not sure if it’s the disease or just 21 year old attitude lol! Also she is taking Norvasc two times a day. The dose is 2.5 mgs twice a day. I really appreciate you taking time to read this take care!
Tell her to take baths with Epsom salt but don’t make the water scolding because she will end up getting nerve pain and swelling yes Raynaud’s makes you moody because it affects your circulation and nerve 0ain. I take gabapentin it helps some but not a lot Aldo stretching even yoga helps too but combination of your daughter being 21 has a lot to do with her moodiness lol
The best advice I can give her is, bundle up before she is exposed to cold. If she gets cold, it almost impossible to control. I put on a hat and gloves 10-15 before I go out and I always wear a sweater and socks. I live in Texas and we reach 110+ degrees in the summer, but all that means to me is that there will be a cold ac blowing everywhere I go! My raynauds is bad year round. Another thing to remember is not to restrict circulation. If her shoes do not fit properly, it can trigger a flare. I have tried many different meds, foot warmers, warm water etc. with little success. I can put my hands under my armpits and eventually my fingers will warm, but let’s face it, who wants to walk around with their hands under their arms??! She needs to be careful with loss of feeling. One of my worst flares was a winter I went to an amusement park with my family,my feet were so cold I couldn’t feel them when I tried to walk. I ended up getting very painful sores on my toes and the ball of my foot. I had to wear slippers until they healed. I too suffer from nerve pain now and would not wish that on anyone. I hope she can prevent that by taking care to prevent attacks. I wish you both the best!
hi my name is Sharon I also have lupus R A sjogrens and raynards syndrome im so sorry to hear your daughter has raynards it isn't very nice to live with both winter and summer T J has given you some great help but I take nifedipine 3 times a day it opens up the blood vessels to help the flow of blood get through to fingers and toes and I know when I haven't took it it has made a great impact with heat etc I do have nerve pain also which I take oxycodone it helps a bit try keep her away from freezers etc I have my shopping delivered so I don't have to go through the tourment of being freezing and in pain good luck with it all take care xx
I GROCERY shop in small intervals, save the frozen and fresh section, right before checkout. Foot warmers do wonders for me, and squeeze,my hands when they go numb or get ice cold. I too am looking for additional help with the symptoms. At night it's my left foot and the discomfort from it being cold is awful. Shoes make my feet hurt if they are tight at the top, so I keep them very loose. I take Norco 10/325mg three times a day but it really doesn't help with this discomfort. Most people who know me think it'd funny or old age that makes me this way, buy its not, and it is far from funny. I have failed three urine drug screenings because my urine is so cold it doesn't even register on the temp reader. Not much info I have found on it either do I too would appreciate any helpful information. My prayers to your baby and tell her she is not alone in her struggled.
Wow everyone thank you for all the wonderful info I greatly appreciate it! I will most definitely pass this info to my daughter! Even though I have all these issues going on myself it is the most helpless feeling when it’s one of your children going through medical issues. So we went to another NL appointment today and he said that she had a bad case of Raynauds and she also had some excessive sweating issue as well. I wrote the name of it down but my daughter has that paper right now. He suggested Botox shots for that or some surgery were they go into the thoracic spine and remove something that will stop the excessive sweating. I of course didn’t like the idea of the surgery so I think we may try the Botox injections first. I will keep you all in my prayers you really go through a lot with Raynauds and the symptoms can not be taken lightly. This has been great insight on how to help deal with the flares, pain and trying to stay warm. Thanks again everyone and take care!
Feel free to join and leave a comment on this subgroup, too, Lili: http://forum.lifewithlupus.org/group/raynaud-s-phenomenon
I have Lupus and Reynauds and Hashimoto's and bladder issues and bowel issues...I have these gloves that you can warm up in the microwave and I have the same for socks. I put them in the micarowave for a minute and then put them on my hands and feet and they work wonderfully! I do not go into the cold sections of the grocery store and I always wear a jacket in the store. I take a lot of hot baths too! By the way, I live in Savannah so it's not really cold here!
Ellen
Hello sweetie
I'd sure like more info on your gloves and socks you nuke. Who makes them and where can I get some. That kind of warmth sounds wonderful! Please h help if you can.
Bear
Have had severe issues for decades. Am seeing a vascular surgeon at present for possible sympathectomy. This is a surgical procedure that stops the symptoms.
Here are the most important things to know:
No smoking
No caffeine
Avoid vibration on hands and feet
Stay away from air conditioning, and dress in layers to facilitate temp changes. I usually make sure one layer is a hoodie to help with cold touching my face, which can set off the response elsewhere.
Wear gloves
Do not handle cold things. Use oven mots for the freezer section, and have someone else cut meat and cold veggies.
Watch meds that can cause vasoconstriction and change them to other similar drugs that are effective for you
Consider nitroglycerine cream for topical use during especially stubborn attacks.
Keep thyroid levels maximized. This hormone controls metabolism and will help her stay warm and minimize attacks.
Eat an anti-inflammatory diet
Watch stress levels as this can trigger an attack.
Carry portable warming devices at all times.
Monitor attacks, and if pain goes more than 30 minutes or so, seek the help of your doctor or vascular surgeon/specialist.
Consider surgery only in severe cases, but know that it is available. Surgery for hands is fairly easy, but for legs and feet, it is similar to open heart surgery so must be taken very seriously.
Test and monitor her vessels via Doppler ultrasound and see a doctor in a vascular clinic.
Monitor her for autoimmune blood changes, as it is common for Raynaud’s to precede visible ANA and antibody changes.
Hope this has been helpful
~Ellen
hi ellen thank you for replying to this discussion you have helped me a lot aswell as everyone else here as we haven't had any ideas of anyone who has been suffering with this awful condition ive had it a few years now and find it very hard to do shopping etc I went out today and on way home my feet and toes just went into a cramp it was so painful I had to take my shoes of and go home in bare foot at least I was in my wheelchair but it puts me off going out but your tips will surely help me and everyone else to try and get on with our lives so thank you very much xx
Sharon
Ellen S said:
Have had severe issues for decades. Am seeing a vascular surgeon at present for possible sympathectomy. This is a surgical procedure that stops the symptoms.
Here are the most important things to know:
No smoking
No caffeine
Avoid vibration on hands and feet
Stay away from air conditioning, and dress in layers to facilitate temp changes. I usually make sure one layer is a hoodie to help with cold touching my face, which can set off the response elsewhere.
Wear gloves
Do not handle cold things. Use oven mots for the freezer section, and have someone else cut meat and cold veggies.
Watch meds that can cause vasoconstriction and change them to other similar drugs that are effective for you
Consider nitroglycerine cream for topical use during especially stubborn attacks.
Keep thyroid levels maximized. This hormone controls metabolism and will help her stay warm and minimize attacks.
Eat an anti-inflammatory diet
Watch stress levels as this can trigger an attack.
Carry portable warming devices at all times.
Monitor attacks, and if pain goes more than 30 minutes or so, seek the help of your doctor or vascular surgeon/specialist.
Consider surgery only in severe cases, but know that it is available. Surgery for hands is fairly easy, but for legs and feet, it is similar to open heart surgery so must be taken very seriously.
Test and monitor her vessels via Doppler ultrasound and see a doctor in a vascular clinic.
Monitor her for autoimmune blood changes, as it is common for Raynaud's to precede visible ANA and antibody changes.
Hope this has been helpful
~Ellen
sweetiepie65 said:
I have Lupus and Reynauds and Hashimoto's and bladder issues and bowel issues...I have these gloves that you can warm up in the microwave and I have the same for socks. I put them in the micarowave for a minute and then put them on my hands and feet and they work wonderfully! I do not go into the cold sections of the grocery store and I always wear a jacket in the store. I take a lot of hot baths too! By the way, I live in Savannah so it's not really cold here!
Ellen
Ha Ha! I see we have two Ellen's - very unusual and my middle initial is S!!
I am not home right now to look up the names of these gloves and socks that one can warm up in the microwave but when I get home I will write back to you.
sweetiepie65 said:I have Lupus and Reynauds and Hashimoto's and bladder issues and bowel issues...I have these gloves that you can warm up in the microwave and I have the same for socks. I put them in the micarowave for a minute and then put them on my hands and feet and they work wonderfully! I do not go into the cold sections of the grocery store and I always wear a jacket in the store. I take a lot of hot baths too! By the way, I live in Savannah so it's not really cold here!
Ellen
Hello
Thank you everyone for the awesome information. I'm trying to stay warm by layering clothing. As you know I'm taking norvasc also wearing gloves an lots of cool kind of expensive socks but worth it. I will try those ideas & tricks of yours that I haven't tried. Thank you again. Hope you all had a good weekend.
I can't wait to try a pair of microwavable socks and gloves. :)
Thank you again everyone that gave my daughter and I so many different warming options and medical info! This has been a great discussion I love how so many people got involved with this conversation and gave so many wonderful tips! This is to be taken very seriously and I’m trying to be pro active with my daughters care. The list you posted Ellen is so helpful I greatly appreciate it! Sweetiepie65 those gloves and socks sound great I have to try and find a pair. Let us know we’re you got them when you get a chance! All the personal stories are so great also everything is such help! I don’t want my daughter to think about having that surgery yet until she’s tried all other options. We’re going to look into he Botox injections first along with meds. Has anyone had the Botox injections and if so what was the outcome?
I needed to ask if anyone had Botox injections in their hands due to hyperhydrosis for excessive sweating not the Raynaulds I needed to explain that better. I went back and read it and it didn’t make sense lol!