Author Topic: Raynaud's again  (Read 413 times)

eija

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Raynaud's again
« on: May 13, 2017, 06:23:11 PM »
It seems my "probably" Raynaud's, a mild one (not diagnosed by a doctor) is progressing. A couple of questions about it - could not find answers for these:

1.  Is Raynaud's progressive? I mean does it get worse gradually, or is it just "there" one day and stays the way it started, without getting worse or better in time?

2. I know Raynaud's can affect one's tongue. How about the roof of the mouth?

I've noticed that I'm getting way worse at eating cold stuff. I never tolerated them very well, but now it's gotten a lot worse. E.g. eating ice cream makes me feel like my mouth was sprayed with dry ice and it just crumbles away, after freezing my whole head. No, my teeth are okay with the cold, it's the tissues in my mouth that don't tolerate it. Then, still hours later, I feel the center of my tongue (and the roof of my mouth slightly, too) is weirdly cold, or cooler than the rest of my mouth. Or has my weird spot of neuropathy (on the side of my jaw) spreaded into my mouth, too?
Female, 49, in Finland
Sjögren's, fibromyalgia, hypothyroidism (Hashi?), depression, migraines, pressure urticaria, mild Raynaud's.
Cymbalta, Tyroxin, Esomeprazole, Oftagel drops

Tharrell

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Re: Raynaud's again
« Reply #1 on: May 13, 2017, 09:35:54 PM »
Yes to everything, Eija! Also tip of nose and esophagus can be affected. Mine also is relative mild compared to the fingers I have seen on my friends fingers which turn black!
MCTD, sjogren's,ra,Issac's syndrome, acephalgic migraines, m.kansasii lung infection, plaquenil, requip, symbecort,B2, B6, D3, spiriva, albuterol and 7% saline nebulizer, topiramate, prozac for raynauds,synthroid,dilantin, orencia, rifampin, ethambutol, levaquin, cevimeline, xiidra eyedrops

eija

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Re: Raynaud's again
« Reply #2 on: May 15, 2017, 06:01:56 PM »
Thanks, Tharrell,

Yes, Raynaud's can be horrible. I have a friend who's lost more than half of her fingers because of it :( So far I don't get the blue fingers/toes, just spots of blue on my (white) toes or blue fingernails. Once I noticed my fingers were very slightly bluish.

Tip of nose, I knew that - actually mine is probably affected, too - but esophagus? Wow. I've been googling this a lot but haven't found anything about it being progressive. Just seemed so to me.

I haven't noticed my tongue turning white or anything else from cold but it sure hurts from it, as well as the roof of my mouth. I ate something cold (just from the fridge, not frozen) about an hour, two ago and the roof of my mouth still feels achy cold.

Female, 49, in Finland
Sjögren's, fibromyalgia, hypothyroidism (Hashi?), depression, migraines, pressure urticaria, mild Raynaud's.
Cymbalta, Tyroxin, Esomeprazole, Oftagel drops

SjoGirl

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Re: Raynaud's again
« Reply #3 on: May 17, 2017, 04:51:48 PM »
The key to controlling Raynaud's potential damage is keeping your core and/or affected parts warm. I rarely drink cold water, usually lukewarm or tea or coffee.

I use crafters gloves to keep hands warm if it's not cold enough for regular gloves. They make toe warms that are similar, but I've not tried them. Oddly if I try to keep my feet warm the rest of me sometimes overheats.

If your nose is affected keep it covered in extreme cold, same with your ears.

I've also found that the more I move around the better my circulation is (keep in mind Raynaud's is a disease that affects the circulatory system). Days when I sit a lot my hands and feet are frozen by night time.
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.

SjoGirl

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Re: Raynaud's again
« Reply #4 on: May 17, 2017, 04:52:47 PM »
One more think I understand that in very bad cases some people take beta blockers to promote circulation.
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.

eija

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Re: Raynaud's again
« Reply #5 on: May 17, 2017, 05:48:11 PM »
The key to controlling Raynaud's potential damage is keeping your core and/or affected parts warm. I rarely drink cold water, usually lukewarm or tea or coffee.

I use crafters gloves to keep hands warm if it's not cold enough for regular gloves. They make toe warms that are similar, but I've not tried them. Oddly if I try to keep my feet warm the rest of me sometimes overheats.

If your nose is affected keep it covered in extreme cold, same with your ears.

I've also found that the more I move around the better my circulation is (keep in mind Raynaud's is a disease that affects the circulatory system). Days when I sit a lot my hands and feet are frozen by night time.


You're very right about keeping one's core warm. It helps a lot. At home if my fingers feel cold I pull my sleeves over them, but yeah, crafters gloves would be a good idea. For my feet I just use thick knitted wooly socks, two or even three pairs on top of each other. Oddly, I have the same problem that sometimes I get overheated because of too warm feet. Too warm shoulders is another thing that does that. It's weird and very uncomfortable!

You're spot on also on moving around, but that would require energy and it's something I don't have :(

With my horse gone, I can now mostly avoid going out during extreme colds - not that we had any of those last winter, thankfully.



[/size]One more think I understand that in very bad cases some people take beta blockers to promote circulation.



Betablockers are not advised when you have Raynaud's. They lower blood pressure e.g. worsen the circulation. I had those for migraine preventions but quit them because of R. For a while it did help my symptoms.



Female, 49, in Finland
Sjögren's, fibromyalgia, hypothyroidism (Hashi?), depression, migraines, pressure urticaria, mild Raynaud's.
Cymbalta, Tyroxin, Esomeprazole, Oftagel drops