Raynaud's Association

Introducing Our New Web Site and Forum

Frostie — 2012-12-31T16:17:33 -05.00

We have exciting news for Forum members - hope you'll be patient with us through the transition - we need your support!

http://www.raynauds.org/?p=2676

Botox May Improve Blood Flow In Raynaud's

Sarah — 2012-11-17T14:34:26 -05.00

Hi, guys!! I'm back (er, finally!)

I received palmar Botox injections from my dermatologist 5 times (every 6 months), and experienced significant relief every time, starting immediately (probably because the inflammation around the injection sites got my circulation going), improvement progressed over a week and then peaked, and results were good for 5-6 months -- no attacks, no sweating.

I moved to TX last year and couldn't find a doctor who performed the procedure (I was in MD before, and my doctor was Roni Ford), so I had to go a year and a half without. I was coping relatively well, but I had a severe hypothyroid episode a few months ago that really crashed my system and caused really severe sweating + almost constant painful Raynaud's symptoms in my hands/feet.

With my rheumatologist's help, we found a doctor in a cosmetic-surgery practice (he normally does this for hyperhidrosis), and he performed the procedure on Monday of this week. 5 days later, I've had no episodes, no sweating, and significant pain relief (even the days when my hands were sore post-procedure were a huge improvement from the constant freezing/sweating.)

I have found it to be immensely effective -- and, for some odd reason, treating my hands reduces the number of flare-ups in my feet. I guess that since the sympathetic nervous system is all connected, somehow the Botox prevents vasospasm in the hands, and therefore the signal to clamp down isn't transmitted to the feet? (No idea if this is scientific, but it's at least my anecdotal observation that my feet consistently improve after I've had my hands treated, and I've never had my feet treated.)

Sadly, I've never been able to get insurance to reimburse more than a couple-hundred dollars out of the $1500 cost -- Raynaud's treatment is an off-label use, and some insurance companies consider hyperhidrosis treatment (and I also had hyperhidrosis DURING the Raynaud's episodes, which I have seen other Raynaud's sufferers report) to be "cosmetic," they won't pay for it.

Maybe I'll get lucky at some point and they'll start paying . . . but in the meanwhile, even though $3,000 a year is a LOT of money for someone with my income, it's absolutely worth it in terms of pain and symptom relief, and I hope I can keep doing it forever!

-- A <3

Alcohol and Reynauds

mfpmfp — 2012-10-31T18:50:11 -05.00

I doubt it. No matter how fast the blood moves it through your system you are still taking in a certain amount of alcohol. Also a breathalyzer measures the alcohol content on your breath, not by taking your blood. Parts of the alcohol's particles will stay in your mouth, which is where they test from.

ADHD Drugs Linked to Raynaud's Syndrome

Sarah — 2012-03-20T15:16:27 -05.00

shaynap84~
Did you have any symptoms of Raynauds prior to taking Adderall? If you don't mind me asking what was your dosage and frequency? The reason I ask is b/c I was diagnosed (via sleep/wake study) with Narcolepsy in June 2011. I started Adderall at the reccomendation of my sleep Dr. Recently, in January 2012 I began having a severe set of Raynauds symptoms without known exposure to cold. My GP said that it wouldn't be from the Adderall since I have been on it for almost a year now. I have always been a cold person my whole life whose lips turn blue when cold but had never had numbing of my toes with ulcerish purple sores until recently.
Even if Adderall were the cause of my Raynauds symptoms, for me the benefits LARGELY outweigh the Raynauds symptoms. Unfortunately, I don't think that I could function w/o Adderall. I was falling asleep while driving my daughter to school in the AM and I have 3 kids that I was begginning to be unable to take care of due to the Narcolepsy Is there a different med with the same benefits that won't exascerbate Raynauds?
S

ADHD Drugs Linked to Raynaud's Syndrome

Sarah — 2012-03-16T18:11:13 -05.00

I have had some of the symptoms of Raynauds for over 12 years, but assumed it was related to carpal tunnel. I have been on Concerta for 10 years, I assume there is no connection between the meds and the symptoms. I would think, in regards to an above post, that smoking would make most of the symptoms worse.

ADHD Drugs Linked to Raynaud's Syndrome

Sarah — 2012-03-16T13:55:06 -05.00

I have raynaud's and have been off adderall for over a year but took it on and off for 10 years.

I definitely think its the fault of those drugs.

ADHD Drugs Linked to Raynaud's Syndrome

Sarah — 2012-03-16T06:59:37 -05.00

Replying to this 2008 post to place it back in the forum.

Botox May Improve Blood Flow In Raynaud's

Sarah — 2012-02-19T11:57:34 -05.00

Hello everyone...I haven't seen a post from anyone this year (2012) and hope you are all still around. I just discovered this and it is amazing how you have described my symtoms to a "T"! I would have said heavy and swollen and they get that way if I walk with my hands primarily down by my side, eat certain foods, drink alcohol (this happens everytime I drink so I have stopped drinking). I moved down to Florida 11 years ago from up North due to me not being able to feel my feet or hands (mostly feet) 8 months out of the year. It felt like I was literally walking on cement blocks...not feeling (except a heavy one) from ancles down! I thought I was going crazy but was able to at least figure out that it had something to do with the cold weather (mostly). I wasn't diagnosed until I was down here about 5 years. I felt better with having a diagnoses again...thought I was crazy. I was also diagnosed with fibermyalgia but refused to believe it but just recently was diagnosed again with a different doctor. I am one of those people who don't like o complain or show I am hurting but seems the older I get the worse its getting. Not taking anything for either...oh did I mention I suffer from SEVER migraines? Also discovered that you can't take the bata blockers because of migraines so I was trying to research botox. I had a doctor a few years ago who also suffers from migraines who recommended botox (pre-raynauld diagnosis) but luck (or lack thereof) would have it that I lost my inurance so I couldn't return to start the injections. Now here I am several years later and trying to fight all of this. Oh sorry forgot about my back issues...oh bother! I feel at the age of 45 I have truly started the steep hill of falling apart :/ But I try to keep positive (a couple of days a month are hard but I kick myself in the butt and keep going). So I've made an appointment with that particular doctor in Clearwater to see if he is still doing the injections and see what he thinks about the injections being 2-fold...for my migraines and my Raynaulds. Wish me luck and please reply back...this forum was the best I discovered for these issues.
thanks everyone!

Alcohol and Reynauds

mfpmfp — 2012-02-13T14:32:21 -05.00

Since Reynauds is circulation related, would it affect blood alcohol levels as measured by a breathalizer test?

Warm to Winter Foot Care Tips

Sarah — 2012-02-07T11:52:31 -05.00

I got chilblains really bad last year on both of my feet, so far this year i've only gotten them on 1 foot. Always looking for new ways to keep my feet warm.