[specialk16]

Has anyone here experienced digital ulcers with their raynauds. This has been a new symptom for me. I was just diagnosed with MCTD and I have been having problems Raynauds since 2003. Just this year I have noticed changes in my fingers with ulcers. I work with a heater at my desk, but a lot of times when I keep it on for long periods of time it makes my fatigue even worse and makes me want to fall asleep at my desk:lol:It makes it so hard to type here at work. I was wondering how others out there keep warm and also how they treat the ulcers. My doctor wasn't all that helpful.

 

[ROSJAC]

HI Kasha, I was dx. with Raynauds in !996. I have not had ulcers. My Raynauds reacts to stress, air conditioning and especially the cold winters in central, Ill. I have problems getting oxygen level readings and with blood tests. Because I have Lupus with lung involvement, I have frequent check-ups at my local Heart and Lung center. Sometimes they put warm towels on my arms to bring my veins up for blood tests and also they have me hold my hands in very warm water. The lady at the Lung center that takes my Oxygen levels gave me a pair of mittens that look like aluminum foil to hold heat into my hands so she can get a reading. Sometimes this works and sometimes they try getting readings from my ear lobes. I am very self-conscious about shaking hands with others...they always react to my cold hands and make a comment. I hope you find a doctor that will take the ulcers more seriously. Do you see a Rhumy? Take care, Rosie

 

[specialk16]

Hi Rosie...
Yes, I too have had problems with my oxygen levels being read... they have tried with my fingers, toes, nose, ears... LOLOLOLOL... whenever this happens I always let my doctors know that I am still alive :rotfl:. It has become a nuisance here at work because I am on the computer most of the day and my left index finger hurts all of the time... I am self conscious about shaking others hands too... 1. because they are so cold all of the time and 2. because of the ulcers and my fingers are cracked an rough... even thought I do put lotions and things on, they still aren't all that smooth. Thank God my boyfriend understands and doesn't mind holding my hand or trying to keep them warm....

 

[Maia]

I know there are some medications you can take that can help - I don't have this level of problem so I don't take anything for it but hopefully others will come along with their experiences. You could also do a quick site search for medications and Raynaud's and see what comes up.

My feet tend to be worse than my hands, and I love those microwaveable seed filled bags. You could try that instead of the heater for a few different spells a day and see if that helps keep you awake It must be very hard to manage with those cold fingers and trying to be on the computer all day.

Good luck!

 

[specialk16]

Thanks Maia... I will search the site and see what I come up with.... the feet warmers sound nice... I love being all warm and cozy seeing as I am cold most of the time

 

[Lily]

Hi Kasha,

Sorry you have this problem My Raynauds is pretty mild it would seem and I haven't had to resort to any of the treatments. I remember that others with this problem have used things like nitroglycerine cream and also an oral drug called Nifedipine. Your doc should know about these :hug:

Hope you can find something to help soon.

love
Lily

 

[lazylegs]

Some doctors are also using Viagra. It comes in a topical form and supposedly it helps with vasodilation.

Take care,
Lazylegs

 

[KarolH]

I have never had this and it sounds painful.

Just wanted to send hugs to you and I hope this improves.

Keep us posted and let us know how you make out moving ahead.:wink2:

 

[x_claire_x]

Hiya, yes I suffer from pretty bad raynauds in all weathers, shopping in the supermarket is ****!! I have battery thermostatically controlled gloves for outside, rechargeable heated insoles for my walking boots and have started taking adalat (nifedipine) 5mgs, supposedly three times a day...when I have to, sometimes get away with twice. Even in the Caribbean I got raynauds going in the sea,,,,grrrr. I get splits at my fingers but haven't ulcerated yet, though am quite newly suffering (last autumn). I also have MCTD and am just hobbling around coming out (I hope) of a flare that knocked me sideways. I am sure there will be some help from your rheumy for the raynauds, there is also some microwaveable mits and boots for when you are chilled inside the house...some have aromatherapy oils in too so quite soothing though very untrendy!!:rotfl: I wish you luck on your quest to find something that helps you... until then take care,
Claire X

 

[specialk16]

Wow.. I didn't know there were so many meds out there for Raynauds... now I am a little irritated that my doc didn't recommend any.... I used to be on something... but I am having brain fog and can't remember exactly what, but it was a blood pressure type medicine .... it really didn't help me at all. I will ask my new rheumy about some of the things you have all suggested. Also, Claire x... I have the same problem with my raynauds flaring up... I was at a cookout, outside carried some fruit to the picnic table and my hands started changing and became numb... my boyfriend was amazed because it was 80 degrees... I HATE going to the grocery store because my hands turn right away when I walk in, and don't let me have to get things from the freezer section. Right now my sis is living with me and a lot of times she will go, but now that she has sjogrens and problems with the cold, she doesn't like going as much either:lol:. I might just have to hire someone to do that chore for me.

 

[Lily]

Hi kasha

The Adalat (Nifedipine) might have been the one you were on? I don't know much about it but there are probably other calcium channel blockers that might suit you better, or perhaps they didn't give you a high enough dose. Something to discuss anyway, sounds like you sure need some relief.

Have you ever thought about shopping online :hehe: that would save a trip to the supermarket :bigsmile:

love
Lily

 

[x_claire_x]

Hi again Kasha, I am on Losartan 25mgs to keep my BP behaving to protect my kidneys etc, but the nifedipine was added in when Raynauds becoming a real problem. I know the dose can be altered and it is a shorter acting drug so I use it as I need to but definitely take 5mgs in the mornings now whatever the temperature outside, my body, like yours doesn't seem to know its summer!! I am with you on the supermarket thing too, mine go immediately, look like I have a corpses fingers! quite embarrassing and pretty painful too.....you may have to try a few things before you get something thats good for you, all the best.
Claire

 

[specialk16]

NORVASC.. that's the drug I was on... but I didn't see much improvement on that. but I think I just was on it about a year.... so maybe I didnt give it a chance. :rotfl:

I may just have to do the supermarket thing online... I will see how costly it is....

You guys are the best!!!!

 

[x_claire_x]

Blimey that drug sounds like a polish lapdancer!! Never heard of it, anyway ask about alternatives there are lots of them,
Claire X

 

[Lily]

Blimey that drug sounds like a polish lapdancer!!

:rotfl::joke:

love
Lily

 

[specialk16]

Claire you are hilarious... Polish lap dancer... :rotfl:I wish...

 

[fluffybear]

specialk16
I have lupus, fibro, sjogren's disease, rheumatoid arthritis, and raynauds and some other crud too, the list could just keep going. Anyway, I don't think I have alcers but when I was hospitalized a few years ago with very low platelets, after I got home I noticed very small wart type things all over my hand. I had a wart before this doesn't look like them exactly but that is what my doc called them is warts. I have them on the front and back of my fingers and between. I had gotten staph infection while in the hospital so I almost died there and when I got out that was the last things the drs were worried about. They sure do bother me to look at them though. How big are your ulcers? Mine don't hurt but they itch sometimes. I have the body rashes that flare up so maybe I am prone to this kind of thing.

 

[Pink Pearl]

Kasha, you can order your groceries to be picked up or to do it all online and have them delivered. The Kroger chain stores here will do all the above and several others, Safeway among them, will deliver. They are usually delivered in the morning so if you are not able to be home, you may find picking them up easier.

I'm sorry that you are battling so many issues with your hands. I have problems, but the reverse of yours. My hands are almost always HOT. As a result, I am usually warmer than most people around me. It has its merit for I can tolerate cooler temps in winter than most people.

Good luck in resolving this issue. I hope you are able to get help for your grocery shopping.
Sally

 

[specialk16]

Hey Fluffy Bear,

the best way to describe what is on my hands is that it seems like I have a lot of scar tissue that develops over my fingertips, and when I get cold they just hurt... it is so ugly, sometimes they get jagged and catch on my clothes therefore sometimes tearing which is VERY painful.

Pink Pearl,

Thanks for the advice... we don't have any Kroger chains down here, but I have been researching. Thanks again for your responses.

 

[Mason'sMommy]

I have had the ulcers a few times from the raynauds my doctor put me on Adalat and that worked for me but he doesn't leave me on it all the time only when the ulcers show up.
Fluffy I have the wart looking thinks on my hands as well as my lower arms and my rhumey said they were molluscum contagiosum (spelling may be off as my brain isn't that great lately)