It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Raynaud's Syndrome Message Board
Post New Thread   Reply Reply
LinkBack Thread Tools
Old 09-12-2012, 09:00 AM   #1
Member
(female)
 
Join Date: Sep 2012
Location: Brighton, Michigan, US
Posts: 50
blessedtobeme HB Userblessedtobeme HB User
Raynauds

I am new to posting but have been reading for many months.

How is it possible to have sweat running down your back and feeling like you could naturally combust but your hands and feet be freezing cold and hurting in the summer?

I always feel like I am having my own personal summer, sweat standing on my scalp, etc. but my feet especially are always purple and ice cold no matter what.

I don't get it. In the 2 year testing cycle for other AI issues but not looking forward to more symptoms.

Thanks for your time.

 
Reply With Quote
Old 09-17-2012, 09:07 AM   #2
Veteran
(female)
 
luca689's Avatar
 
Join Date: Oct 2004
Posts: 450
luca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB User
Re: Raynauds

Yes, I can be sweating like crazy in the heat and still have a raynaud's attack. That being said, Raynaud's attacks are just that. There are periods of "normalcy" in between attacks. If your feet are always discoloured there may be another vascular process at work. How long have you been diagnosed with Raynaud's?

 
Reply With Quote
Sponsors Lightbulb
   
Old 09-17-2012, 10:00 AM   #3
Member
(female)
 
Join Date: Sep 2012
Location: Brighton, Michigan, US
Posts: 50
blessedtobeme HB Userblessedtobeme HB User
Re: Raynauds

Thanks for responding. I have been diagnosed for about 10 months. I have always had cold feet and hands, with the toes and finger being painful in the cold, Michigan winters. Last January I got bronchial pneumonia, took prednisone, zpac, inhaler and all of sudden my feet were unbearably cold and spotted. The white areas were the coldest with the red/purple being mildly cold. When the blood finally came back to normal they were hot and swollen like fat, shiny, sausages. It was painful. Now, they are just cold and purple all the time, skin is thick like I have been going barefoot, and they tingle a lot.

I have had the doppler and vasular tests on them, normal. But in having bloodwork done, my cpk level is creeping up and has been for 2 years, I have a malar rash on my face with thickness and raw areas around my eyes and mouth. I just got a weak positive CCP with negative RF. My rheumy is leaning towards RA but hasn't actually confirmed that yet. I have a post on the Arthritis board, too.

They changed my bp meds this weekend as I was taking a beta blocker that apparently aggravates Raynauds, switching to Norvasc. Almost ended up in the ER. My heart rate wouldn't come down below 135 even lying down. Now I am on both, weaning off the Metaprolol. If it is not one thing it is another.

Anyway, I was thinking my body was playing tricks on me, being hot, sweaty and cold too. Thanks for the affirmation that it isn't just me.

 
Reply With Quote
Old 09-17-2012, 01:47 PM   #4
Veteran
(female)
 
luca689's Avatar
 
Join Date: Oct 2004
Posts: 450
luca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB User
Re: Raynauds

So you've had all the ANA screenings then? and the antibody tests like anti centromere or jeesh, I can't remember the rest, LOL. And there are a number of different calcium channel blockers that are used to treat severe Raynaud's. Sometimes you have to try different ones. I know that nifediine is a popular choice. There are also other medications available. and I am guessing that you've had a thyroid screening too. Raynaud's is not triggered just by cold but also such things as stress or even a mild change in temperature, such as touching something even slightly cooler than ambient temperature.

 
Reply With Quote
Old 09-17-2012, 02:56 PM   #5
Member
(female)
 
Join Date: Sep 2012
Location: Brighton, Michigan, US
Posts: 50
blessedtobeme HB Userblessedtobeme HB User
Re: Raynauds

Well, it is not likely that my stress will subside anytime soon. I have a boy who is an F-16 pilot in Afghanistan, 29 grandkids, I work full-time as the breadwinner and now all this. I need to work 4 more years to retire. Some days, I just want to cry I'm so tired and hurt so bad.

I have had so many tests and literally no explanation of the results. I am assuming from the fact that they keep ordering more something is going on. I see no ANA test, but there is a an ADNA test - 4.0. What other test is important?

Thank you, Luca.

 
Reply With Quote
Old 09-17-2012, 03:31 PM   #6
Member
(female)
 
Join Date: Sep 2012
Location: Brighton, Michigan, US
Posts: 50
blessedtobeme HB Userblessedtobeme HB User
Re: Raynauds

Well, it is not likely that my stress will subside anytime soon. I have a boy who is an F-16 pilot in Afghanistan, 29 grandkids, I work full-time as the breadwinner and now all this. I need to work 4 more years to retire. Some days, I just want to cry I'm so tired and hurt so bad.

I have had so many tests and literally no explanation of the results. I am assuming from the fact that they keep ordering more something is going on. I see no ANA test, but there is a an ADNA test - 4.0. What other test is important?

Thank you, Luca.

 
Reply With Quote
Old 09-18-2012, 07:11 AM   #7
Veteran
(female)
 
luca689's Avatar
 
Join Date: Oct 2004
Posts: 450
luca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB User
Re: Raynauds

I'm not sure if that is an ANA screening test or not. A pattern is also usually reported with the ANA test. A nailfold capillaroscopy test is also important to have done, in light of your age and sudden onset of Raynaud's. It is a non-invasive test that involves the Dr putting a drop of oil on your finger near the cuticle, or toe if you don't have Raynaud's in your hands I suppose, and looking at it under a low power microscope. They would be looking for what is called capillary drop out and abnormal loops and such. You also need the other antibody tests, such as anti centromere, anti DS-ANA, anti-RNP, anti-SS-A, Anti-SS-B, SCL-70, and I'm sure that there are a few others. Thyroid function test a must in view of thickening skin and your age and gender. As a general rule of thumb, I always get copies of any test result. I also write down any questions I may have, and narrow them down to no more than 5, so that I can discuss them when I see my rheumatologist. I am very lucky in that I have a great Dr, and he will even write down answers for me if I don't understand or want to look at things later. Just so you know, I have Raynaud's and Limited Progressive Systemic Scleroderma, among other things, so I know how confusing this all can be. I was diagnosed in 2007 and I still and always have worked full time. I truly hope you only have Primary Raynaud's but if not, early treatment for what ever ails you can do wonders! Please give my thanks to your son for his service. And 29 grandkids, wow, the Holidays must be grand at your house!

 
Reply With Quote
The Following User Says Thank You to luca689 For This Useful Post:
blessedtobeme (09-18-2012)
Old 09-18-2012, 07:25 AM   #8
Member
(female)
 
Join Date: Sep 2012
Location: Brighton, Michigan, US
Posts: 50
blessedtobeme HB Userblessedtobeme HB User
Re: Raynauds

Thanks, Luca. Yes, I am so blessed with my grandkids and children, I can never complain again about anything. I will relay your message to my son, when he comes home.

As I looked as results last night, I noticed that my AST and ALT are elevated. These are liver enzymes, right? I will ask about the nail drop as they never really did any tests to confirm the Raynauds other than the doppler vascular test to r/o primary. It is secondary, definately.

I need to be more agressive in my own care. I had an EMG at the hospital one afternoon and it was a 2 hour test. I was so tired, I fell asleep waiting for the doc to come back in and tell me the results. When I woke, my chart was still on the table, card in the door and the entire dept had gone home. I went to Neurology next door and the doc called my doc back to talk to me. I was very upset for being left. After admitting he forgot me and profusely apologizing, he said I needed a muscle bx and a MIP or MEP?

My husband wants to go with me to the next Rheumy appt to get answers. My memory is not too good either.

Last edited by blessedtobeme; 09-18-2012 at 07:29 AM.

 
Reply With Quote
Old 09-18-2012, 09:59 AM   #9
Veteran
(female)
 
luca689's Avatar
 
Join Date: Oct 2004
Posts: 450
luca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB User
Re: Raynauds

Husband at appointment is a great idea! If it's def secondary, you certainly will benefit from treatment! I know about the fatigue and "I has a dumb" a lot, LOL. Wishing you the best!

 
Reply With Quote
Reply Reply

Similar Threads
Thread Thread Starter Board Replies Last Post
Lupus and Raynauds Advice dragh090671 Raynaud's Syndrome 11 05-26-2014 07:46 AM
Raynauds questions Betty325062000 Raynaud's Syndrome 8 04-18-2006 06:02 PM
Raynauds Syndrome MsPanama Raynaud's Syndrome 6 10-29-2005 05:49 AM
Lupus & Raynauds Bonnie50 Raynaud's Syndrome 9 07-09-2005 01:35 PM
??? about raynauds syndrome laurabell Raynaud's Syndrome 7 03-11-2005 02:11 PM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



luca689 (5), jenj770 (1), kadensmom (1), moonstone1981 (1), ordway (1), Titchou (1), Marc46 (1), Darydien (1), cloraine (1)

Site Wide Totals

teteri66 (1165), MSJayhawk (1000), Apollo123 (898), Titchou (833), janewhite1 (823), Gabriel (758), ladybud (747), sammy64 (668), midwest1 (665), BlueSkies14 (610)



All times are GMT -7. The time now is 02:28 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!