The Raynauds stuff is just plain uncomfortable. I assumed it was aggravated with cold temperatures, but now I'm thinking it just acts up when everything else is acting up. Doesn't want to be left out of the party! When it does it, the fingers and/or toes go completely white/blue-ish and get completely numb. They stay like that for a while - anywhere from a few minutes to an hour so far. It's so painful when they turn the right color again and the feeling comes back.
Thanks you guys. I hope I start feeling better, too. I wanted to kick RAs a** this morning. I went to my son's Christmas program and had a heck of a time standing. 35 minutes. That's it! And stuff started screaming at me. I just smiled and tried to avoid cringing. I'm sure I looked lovely. [QUOTE=Linncn]
Do your hands just drain color with the Reynauds? I ask because mine do that, and the cold makes them hurt too, but just until they warm back up. But mine don't turn blue, just white then red as the color returns. I've discarded the idea of Reynaud's because of the lack of the "blue phase". But things like that don't always follow all the rules, ya know?
[/QUOTE]
My fingers go white and numb....then when the colour comes back and the numbness goes away...they sometimes turn very red and sometimes purplish
Mel, are you on any dmards or are you only taking Doxy? If you've been in so much pain that you've had to take two Vs and Tramadol isn't touching it then it might be time to consider a medication change. You shouldn't have that much pain if Doxy is helping you. Pain + inflammation= damage. CALL YOUR RD, get an appt. and discuss medication options to take along with Doxy or in place of. Your RD needs to see you and examine your joints, the Raynauds and the eye issues. You need medical help to get through this. Take care and keep us posted. Lindy
I'm taking imuran along with the doxy right now. I definitely need to get back on the vic so I called and left a message with the RDs office earlier this afternoon. I also want to ask about my recent lab results to see what they showed.
I have that song in my head::
"I need a hero
I’m holding out for a hero ‘til the morning light
He’s gotta be sure
And it’s gotta be soon
And he’s gotta be larger than life"
A hero, a miracle, a vacation? Hahaha! Sorry, I'm quite goofy after taking my ambien. I'll be crawling in to be shortly.
Love you guys!!!
me
mel, perhaps we are leading the same life? I told my RD recently that I was taking two vicodins now to get any relief. He said "yeah. I imagine you would need two". Huh? I don't know what I was expecting him to say, but it sure wasn't that. I don't like taking vicodin everyday... But I also can't stay home and ice things. I've got stuff to DO. So I have to make vicodin my pal.
My eyeliids stick to my eyeballs at night too...
I've been losing weight at a steady clip, and I don't need to
Today, indoors, my friend said "oh my gosh, what's wrong with your hands?" They had turned a lovely shade of dead person blue. I wasn't in the least bit cold.
So Mel... Since we're leading the same life I propose we divide and conquer. I'll make a chart. I'll take pain and swelling Monday, Wednesday, Friday... You take raynauds and glued on eyelids. We'll alternate weekends. I think it could work :-)!
Hang it there Mel. I'm thinking of you.
Leila
[QUOTE=leila]
So Mel... Since we're leading the same life I propose we divide and conquer. I'll make a chart. I'll take pain and swelling Monday, Wednesday, Friday... You take raynauds and glued on eyelids. We'll alternate weekends. I think it could work :-)!
Hang it there Mel. I'm thinking of you.
Leila [/QUOTE]
Ooh - an ailment swap meet! I'll take some pain and swelling on the weekend if someone will take my clumsiness and GI issues a couple times during the week.What we need to do is swap ailments with healthy folks so everyone gets their fair share. ;)
Leila, I think we're paddling in the same boat, going in circles!
(Hiiiiiiiiiiiiiiiiiii, Snow!!)
Jas, sorry, but I can't accept your gift of clumsiness. My friends already call me "Grace." Aww Mel!!! You ARENT burdening ANYONE :) I'm so sorry you're feeling so lowsy and so down lately! I wish I had some great answers for you to make you feel better. Did you really say, I feel like a hairless chihuahua?? That made me laugh. It's good to vent and get things out. I sure hope you start to feel better soon. Maybe the new year will bring better days for you?! Lets hope!!I agree - venting is excellent. I'll even go as far as suggesting that we all go into a coat closet and scream at the top of our lungs for ten seconds. Primal therapy, you know, good for the psyche.
Mel, sorry you're doing badly. I'm convinced these holidays add stress and send those bloody autoimmune cells in orbit.
Anyway, I don't have Raynaud's though a close friend does. She gets the white finger tips and bleeding cuticles. But she hasn't had it in a while - maybe because she's been swimming in an indoor heated pool and keeping the blood circulated.
I did some research for her when she was diagnosed with mild pulmonary hypertension and saw a cardiologist. Turns out one of the symptoms can be Raynauds, which is thought to be a vascular disease.
What's interesting about HER case is that 5 years ago she was diagnosed with overlap sydrome [after being diagnosed incorrectly as dermatomyositis]. That's when she presented with the Raynauds, or "mechanics hands." With treatment of the underlying disease [overlap syndrome] the Raynaud's disappeared. A few years later the Raynaud's came back....and disappeared again with the same treatment of the overlap syndrome.
Sorry for my belabored account, but recently she was feeling poorly and her rheumatologist ran her Vitamin D.....it and her Vitamin C were toxic and causing heart palpitations. They sent her to a cardiologist who diagnosed the pulmonary hypertension. During the course of her visit with the cardiiologist , who went over her history in detail, the Raynauds was mentioned.... he commented that Raynauds was considered a vascular disease.
So with that in mind, let me recommend that everyone get the Vitamin D level checked. Being below normal can cause bone and joint problems and really make you feel rotten. [I'm going through that now.] Getting too much Vitamin D on the other hand can affect the heart and other body systems.
This is a test apparently most doctors don't routinely run. But make a mental note to get it checked once a year.
So many autoimmune diseases are connected.
I'm taking Vitamin D now (going on a two weeks?) I'll ask about the test though. :) I also started increasing the fish oil to 2 day. I'm working up to 3 a day; want to make sure my stomach doesn't rebel.
I'm taking biotin for the hairloss. Is there anything else that helps?
I'm working hard to maintain a positive outlook - some days are harder than others. I'm pushing myself a little too hard each day, I think, because I pay for it the day after. I'm determined not to be a lump though! :D
Hope you're all having a superfantastic and extra-comfortable evening!
I hope you get to feeling better soon. It is hard to stay positive, but nobody should expect you to be positive all the time. Always positive people worry me :)
My CJ (throat joint) is inflammed so I get the lovely catch-click feeling when I swallow and my voice has been coming and going. Most of today was spent speaking in a whisper. It would come back for a while after a few sips from an iced drink, but then a few minutes later you could literally hear my voice go from normal to raspy to whisper. It was the strangest experience! Right now it's a combo - raspywhisper. I hope sleeping will help it get uninflammed so I can speak normally tomorrow. Maybe I talked a little too much? I did say Merry Christmas to everyone I met today. I want a Santa hat real bad. ;)
Co_Mel Sorry for your troubles. Glad that you vented. keep us posted as to how things are going. I certainly hope you do not have Sjorgrens. If you do then get the eye drops with no preservatives in them. Preservatives cause your eyes to get even drier. Also I get a night time gel with no preservatives in it.
Jas I am truely sorry. You must be in the worst shape of all. Poor girl can not get anyone to trade with her. I am already clumsy and have my own GI troubles. So I do not see how trading would help you out.
Sam I would think that if someone had to high of a vitamin D and vitamin C issue they would have to be causing it by taking to much.
[QUOTE=milly]
Co_Mel Sorry for your troubles. Glad that you vented. keep us posted as to how things are going. I certainly hope you do not have Sjorgrens. If you do then get the eye drops with no preservatives in them. Preservatives cause your eyes to get even drier. Also I get a night time gel with no preservatives in it.
Jas I am truely sorry. You must be in the worst shape of all. Poor girl can not get anyone to trade with her. I am already clumsy and have my own GI troubles. So I do not see how trading would help you out.
Sam I would think that if someone had to high of a vitamin D and vitamin C issue they would have to be causing it by taking to much.
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Hi Mel, How are you feeling today? Is your throat any better? Hugs to you!!! If we're gonna trade eyeballs, I'd like to try out some green ones. Anyone game for doodoo brown? I've been using refresh drops. They're real thick and provide some relief. I'll write down the ones you're using Waddie. Hopefull Sam Walton has them. :)
I'm feeling meh. My throat is still clicking and sticking, but at least my voice is mostly back. I still sound raspy but it's so much better than whispering!! I'm just thankful it's more annoying than painful. My other joints are rebelling, but I'm trying to maintain control. I'm thinking today will involve lots of rest and ice and/or heat and meds and a nap (please!) Hopefully my baby will at least let me do one of those. ;)
Hope you are all having a wonderful day! We're so close to Christmas. Can you believe it?!
I am wishing you the very best Mel & I too hope the baby gives you time for a nap. Seriously....I hope you start to feel better soon.
Pat
No rest for the weary. :D I think he was extra insane for me today. Usually his big brother helps wear him out, but since he's not here the kiddo is just plain nuts!! I can't wait to get him into bed. Hopefully tomorrow he'll be a little more chill. Momma needs a break!
I started taking the fish oil 3x a day today. I'm hoping it will provide some relief from the inflammation. I really wish I could take NSAIDs again; I never realized how much they were actually helping until I couldn't take them anymore. I'm still trying to tough it out with the tramadol. I'm thinking if I'm still this uncomfortable tomorrow I'm going to call the RD about a refill on the vic though. I really don't want to take the vic, but it seems to be a necessary evil.
Those adorable babies. I have been telling my niece that I am going to take a nap. I put her in the playpen I say SHHUSH. It is so funny. So she thinks I am sleeping and starts playing and talking to all of her toys. I do not actually fall asleep. That would take all of the fun out of spying on her. It does get her to stop asking me to pick her up for awhile and gives my muscles some needed rest.I have Green eyes...I'll trade colors with ya, if it will make you feel better!....
Oh hell, I'll trade just about anything if it'd make me feel good!!!!!!!!! Anyone want a hip, knee, wrist, ankle, 5 toes, and shoulder in a pear tree? Lindy
[QUOTE=LinB]Oh hell, I'll trade just about anything if it'd make me feel good!!!!!!!!! Anyone want a hip, knee, wrist, ankle, 5 toes, and shoulder in a pear tree? Lindy[/QUOTE]
I'll trade half a toothWhen do you see the dentist JasmineRain?
[QUOTE=milly]When do you see the dentist JasmineRain?[/QUOTE]
2 hrs...
Mel- well, I hope you have some more relief from all the aches and pains... having a baby has got to be tough when you're trying to rest. That's what I've been contimplating, to have a baby or not to have a baby...just one more...?? maybe... Did you go into remission while pregnant?
Hope today is much better for you!
Jas, no thank you, no teeth can enter the equation. The gum abcess, root canal and finally extraction is the reason I want to trade all of these parts. Maybe we can settle on something else. LIt went better than expected. I had taken a xanax before the visit so I didn't totally melt down. He put a temporary filling on it today, and in 2 weeks I will go back to get the real work done, armed with plenty of Valium. ;)
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