Can any of you please share with me what has helped you with your painful Raynauds? I was put on a calcium channel blocker but all it did was give me a raging headache and not one thing for my painful, freezing cold, tingly hands and feet.
Posted by Lymetoo (Member # 743) on :
Well, I found out accidentally that taking Cortef for my adrenal issues actually helped with the Raynaud's.
This makes sense because it is a very low dose of steroids.
You might also try any anti-inflammatories you can think of like:
prescriptions such as Celebrex
tumeric
mangosteen
aleve
aspirin
??
Is it cold there today?
Posted by Gert (Member # 13584) on :
thanks for the reply back......no its not cold here today and this is what concerns me. I've had this since my LD symptoms got really bad around 2003. It has gotten progressively worse and my LLMD feels it is definitely related to having LD.
I generally wear 2-3 pair of socks and heavy slippers around the house in the winter months but never this early in the year.
The bottoms of my toes are so sore.....like there is a huge blister on them but nothing is there. I know its going to be a continued problem until I get his under control, if that is even possible.
I will discuss these options with my doctor....thanks Lymetutu
Posted by feelfit (Member # 12770) on :
Nitroglycerin cream for the feet was given to my friend for her Reynauds. This was a podiatrist who rx'ed it. She had the lesions and everything on her toes and the cream cleared the lesions and pain.
FF
Posted by Tincup (Member # 5829) on :
Sorry this is happening.
I found out, the hard way.. that the Reynaud's was connected to what became the ACA presentation of Lyme.
It seems a penicillin based antibiotic helps with the ACA more so than do others.
I have NO clue if this will help.. just something to consider.
My Reynaud's has lessened while on penicillin.
Hope it calms down for you!
Posted by Gert (Member # 13584) on :
Ok, I will look into the nitro cream too and Tincup, what is ACA?
I have to share.....I saw a podiatrist this spring at the urging of my LLMD. The podiatrist was not comfortable treating my Raynauds so he referred me to a Vascular Surgeon. Vascular Surgeon determined I was not a candidate for surgery so he put me on a calcium channel blocker and referred me to a Rheumatologist (CRINGE, CRINGE, CRINGE).
Being very hesitant about that I decided to just go and see what he has to say about the Raynauds. I got the lecture of LD and how there is no such thing in NW Penna and no such thing as chronic and blah, blah, blah and then he told me I had frostbite on my toes.
MIND you, the man never once looked at my feet to give me that diagnosis. I was so insulted I jumped up and gave him a real lecture of my own and stormed out of his office.
So here I am still in a lot of pain and still no answers.......talk about passing the Duck Buck, eh? Idiots.
Posted by Tincup (Member # 5829) on :
Gert said.. "So here I am still in a lot of pain and still no answers.......talk about passing the Duck Buck, eh? Idiots."
You made me laugh!
People sometimes come here chewing me out and chewing out others .... because we refer to the ducks as ducks... and call them IDiots.
When I see things like your horrible experience.. especially over and over again...
It's a wonder we don't call them worse.
Sorry you had to go through that degrading and outrageous time with the ducks. Shame on them.
ACA- Acrodermatitis Chronica Atrophicans is a skin condition that occurs in chronic/late Lyme disease.
Tincup, thanks for that link....I don't get here to LN as often as I would like and I think I miss a lot of good information but thanks to you and many others who continue to help us.
Looks like a good long intense read but I will get to it as soon as I can.
Posted by Lymetoo (Member # 743) on :
UGH!! I feel for you, Gert! I don't have it in my feet....yet. I do have some pain in my feet sometimes that makes me think it's neuropathy though. My feet are cold all the time like my hands, but not too bad.
If I handle frozen foods I'm a gonner for hours. Sometimes I can get away with it though.
Yesterday I was cold all day and my hands were bothering me. Today is better!
Hope you find something that works!!
Posted by Pocono Lyme (Member # 5939) on :
Niacin works really well for my husband. Very inexpensive too.
Posted by terri3boys (Member # 12993) on :
My neurologist did lots of tests on me, not specifically for the Raynauds, but it was definitely part of the puzzle.
Anyway, when she finally did a nerve biopsy on my left leg in 3 places, she was able to confirm what she thought was causing me peripheral neuropathy, Raynauds, etc.
She sent the biopsies to the Cleveland Clinic and they dx'd me with Small Fiber Neuropathy. I'm not sure what the tx is, but I go see her in early Nov. to discuss tx options. She talked with me on the phone briefly about it, saying we would need to treat for 1 - 2 years, but we would only be treating the sx. She said currently there wasn't a "cure" for the Small Fiber Neuropathy. I'm looking forward to my next appt. with her.
I'm not saying you need to take it so far with the tests, but we were testing for lots of things and this is one thing that was confirmed. Just thought I'd throw in my 2 cents worth..........
Good luck, terri3boys
Posted by Gert (Member # 13584) on :
Thanks again for all your replies....there seems to be some further research on my part.
My one great toe now has itchy/sore bumps on it....not looking good.
Posted by Tincup (Member # 5829) on :
Gert said..
"My one great toe now has itchy/sore bumps on it.."
JUST in time for Halloween!
Posted by Gert (Member # 13584) on :
OH BOY Posted by feelfit (Member # 12770) on :
gert,
The ointment is called Nitro-bid (nitroglycerin Ointment USP, 2%). It immediately makes her toes and finger tips warm with good blood flow.
Her doctor is not just any poidatrist, but has extensive hospital expereince in diabetic foot care etc. He is on staff at two area hospitals. It may be something to look in to.
Posted by feelfit (Member # 12770) on :
Her raynauds causes '0' problems when she uses the cream.
Posted by Gert (Member # 13584) on :
Thanks once again....My feet are still very painful and I have to wonder if the Levaquin isn't releasing Bart and causing them to flare up!!
Going to research some foot doctors!
Posted by Gert (Member # 13584) on :
I'm so bummed ~ last night my right fingers turned completely white and were icy cold. My husband could not believe it because I had gloves on most of the afternoon and they still turned this color.
This is the first time where my hands have been totally affected by this Raynauds.
Does anyone know if there are gloves I can wear daily in the house? The ones I currently wear are too fluffy. I need something more form fitting that can keep my hands warm during the day Posted by sammy (Member # 13952) on :
Gert, if your hands are small, look for some kids fleece gloves. They are warmer than regular cotton stretchy ones but not bulky like snow gloves.
I've also observed that kids gloves and socks are cheaper than womens.
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