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#1 Kira

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Posted 27 March 2010 - 08:32 AM

What a way to say hi! Hi. I've lurked a bit here, but I need to "talk".

About three months ago I began experiencing more severe Raynaud's than I was accustomed to. Now if I even so much as look at the refrigerated aisle of the grocery store my hands start showing their colors and my body starts to ache. In December of this year my fingers blistered and my hands looked like they had multi colored sausages attached to them. And I had this constant aching everywhere. My primary care doctor did blood tests looking for lupus and rheumatoid arthritis. Everything was totally normal. By the time I was able to get in to see a rheumatologist the swelling had disappeared. He diagnosed me with Raynauds and livedo reticularis and did some more blood tests. Again everything was normal except, of course, a low positive for anti-scl-70. I found that out last week. I have not been my most mature self sense....

The doctor said he would not diagnose me until he saw my hands swell again and/or skin hardening or changing. He gave me good advice about staying warm and suggested that the aches and pains would probably go away if I did so. The aches have diminished quite a bit since I've become religious about wearing gloves and staying warm.
Until yesterday....

I walked for no less than 30 seconds outside in 60 degree weather in the sun without my gloves. I felt a breeze, and my fingers began to ache, then my hands. An hour later my arms and by the end of the day I was just exhausted and in so much pain...When I woke up this morning my hands were indeed puffy. They don't look like sausages. There are no blisters on them. I can't fit my loose ring on my finger without shoving it down, but if I shove it, it can go on. I can bend my fingers, but they are stiff and itchy. Actually, my ankles are a bit puffy too.

I know you guys can't give medical advice or anything. I just don't want to call my doctor. I don't want to seem like a hypochondriac or be told, "yup, you've got scleroderma". sigh.

I want to put on some wool gloves and do twenty minutes of weeding in my garden just to give my hands some exercise, but I don't know if that's a stupid idea or not! I have no clue what is "normal" and what is "dangerous" or if normal is dangerous??

I guess a simple question I do have for you kind folks, is what causes the hand swelling in scleroderma? I am slowly reading through the wonderful articles here, but it can be overwhelming at first. I'm sure you understand. They feel itchy and hot (like an inflammatory thing-duh)...am I doing damage to them or my skin by thinking it's a good idea to move them? If I didn't know I had these antibodies in my system I would instinctively feel like using them would be good for breaking up what seems like fluid build up!!!

So clueless...thank you for listening!

#2 Shelley Ensz

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Posted 27 March 2010 - 10:25 AM

Hi Kira,

Welcome to Sclero Forums! I'm just sorry its because of questions about your health.

The good news is that people can have primary Raynaud's and that's all that every comes of it. They need to stay warm, of course, but things do not progress to other illnesses beyond that. That's the case with the majority of people with Raynaud's, even many that have a few antibodies. So, it is not inevitable that you will get sicker, or even that the swollen hands will return. If they do, well, you have us, and you can deal with it then.

Meanwhile, keep your hands as active as possible. That's good, with or without scleroderma. But hunkering them down and trying not to move them will make them worse. Joints need to be moved to stay flexible, as do muscles and tendons. Favoring or babying them isn't going to do you any good, so keep on using them (unless or until an experienced doctor tells you not to, of course. But I haven't heard of that; movement is necessary for circulation!)

Certainly, stay as warm as you can. Dress in layers. But don't shy away from any activities that you can do; just modify them to help stay warm. That is necessary if you have primary Raynaud's or Raynaud's secondary to scleroderma or other forms of arthritis (like lupus, R.A., etc.).
Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 Vanessa

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Posted 27 March 2010 - 10:21 PM

Hi Kira,

I would just like to second that. Keeping those hands moving I think is really important.

I have Diffuse systemic Scleroderma and you may go no further than Raynauds, but thanks to making a point of keepimg my hands constantly busy with various exersizes when I am able, they are not as bent as I think they might have been.

My rheumatologist gave me Nifediprine which also really helped with the coldness.

Good luck and stay warm.

Vanessa

#4 Joelf

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Posted 28 March 2010 - 03:07 AM

Hi Kira

Welcome to the forum. :)

My hands are definately much less stiff, swollen and more comfortable if I can keep them moving. On Friday I pulled a horse's mane which took me about 20 minutes or so and I was really pleased that I could still do it as I haven't pulled any manes or tails since before I developed Sclero. :VeryHappy:

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#5 geordiegirl

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Posted 28 March 2010 - 10:51 PM

Hi Kira,

I really identify with all your hand issues and your general confusion. My fingers vary between bright red and quite swollen and hard to bend (if I'm slightly warm or exercising), white and numb (if I'm even slightly cold) and on the rare occasions where the temperature actually suits my body they still have shiny red patches from where I had really swollen lumps on them this winter (diagnosed as vasculitis by my rheumatologist). Never thought I would experience 'hand envy' but I do find myself gazing at other people with normal fingers and thinking, 'were mine ever like that?' !!!!
I have been taking plaquenil, but it hasn't made a lot of difference yet (after 3 months). I also have aches and pains in my hands and legs and an ongoing sore hip now, but it's so hard to know what is related to connective tissue disease and what is just a strain from running at the gym!!
I haven't really got any terrific advice...but I do think moving your hands helps, I always do it when they are swollen. Just wanted to let you know that there are others in the same undiagnosed and frustrated boat!

Take care,

G

#6 Jeannie McClelland

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Posted 29 March 2010 - 08:49 AM

Hi Kira,

I think most of us have the same round of hand symptoms. My rheumatologist sent me to an occupational therapist way back when I was first diagnosed and her advice was to exercise my hands. I do. I also wear gloves as much as I can and keep a pair of woolen ones by the refrigerator so I don't forget to put them on when I'm digging for buried treasure.

I'm no doctor, that's for sure, but I think with Raynaud's when it causes vaso-constriction in response to cold, the fluid pick-up and return becomes sluggish and then the hands swell. I've been diagnosed over 3 years now and my hands are about the same as they were at the beginning. I hope yours do as well!
Jeannie McClelland
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#7 Kira

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Posted 31 March 2010 - 09:19 AM

Thank you all for your responses! I hadn’t realized my post had posted:-P

To Shelley ,Vanessa and Joelf: thank you so much for confirming my intuition. I have an autoimmune disease already and I’ve always found that working my stubborn/effected body parts helped in that situation. And good job on the horse Joelf! I’m patting myself on the back too-I went out and weeded a bed. And felt better for it! (I was of course completely bundled up and looking kind of silly, but that’s ok).
Is Nifediprine a calcium channel blocker? My doctor offered me some. I declined, but I may be changing my mind. Do any of you have low blood pressure, and do these calcium channel blockers make you dizzy?

To geordiegirl: do you have the red patches on top of your skin, or underneath? My hands look increasingly like some unappetizing form of deli meat. Sometimes I wear gloves in the house not because I’m cold but because I’m afraid if I spend too much time looking at them I’m going to go completely neurotic! I’m really sorry for your aches and pains. Right now I’m living off of ibuprofen, but I already have GERD and I can see this all just being an accident waiting to happen! I have days where I go with no aches and pains and no puffy fingers, I hope you get some respite too!

To Jeannie: Gloves the by fridge is a very good idea…last night I hurled a package of frozen corn in the freezer because I realized it was seriously hurting my fingers to hold it…bad move on my part :rolleyes:

#8 Vanessa

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Posted 01 April 2010 - 01:53 AM

Hi Kira

Nifediprine is indeed a channel blocker but I too have low blood pressure so they started me on the lowest dose for the first month then increased the dose and, touch wood, all seems fine. I think common side effects are headaches, swollen ankles and red face! Luckily I have not had much of all that.

The other one I am on which helps with Raynauds is Fluoxetine (Prozac) which is meant to keep a permanent smile on the face. Hmmm not sure...

My aspirations for hand modelling have also gone West. I also have an interesting colour spectrum thing going on. Reddish mottling with angry looking white knuckles. But on the upside the backs of my hands are the opposite of Madonna's with not a gnarled vein in sight.

As regards looking after my stomach, I had an ulcer some years ago but was still prescribed Diclofenac ( by mistake) for pain and this caused belly problems. I now have a proton pump inhibitor every morning (Lanzoprazole) and don't take Ibuprofen or any painkiller which is hard on the belly.

As you can imagine, I rattle when I walk.

Oh, and plenty of good hand cream.

Best wishes.

Vanessa

#9 Kira

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Posted 09 April 2010 - 01:29 PM

:rolleyes: Oh good. I wasn't out of line with the hand comment! Yeah, I'm not winning any awards for my hands either. Oh well.
I will ask my doctor about Nifediprine when I see him in September. I was in some degree of (severe) denial when I said no to his meds!

I wasn't prescribed or offered anything for the pain. To be honest (and I do like my doctor) I don't think he expected anything from my bloodwork. Without a diagnosis I don't know that he could give me anything, or that there is anything to give!! I have such severe fatigue from another autoimmune (AI) disease that I try my best to avoid things that make it worse. If I can. I've been pretty lucky with that so far. My doctor. is aware of how much Ibuprofen I take. I'm trying really hard to cut back. Diet changes and staying warm have helped with the aches and pains.

I have been on Omeprazole for the reflux. That and my elevated bed and (whimper) no wine and no coffee has helped. A bit. I need to be a good girl and go see my regular doctor. about my weird belly/intestinal/throat/whatever problems. I'm really nervous about ever talking to another doctor again though.

Ok...I'm babbling now! Thank you for your reply! By the way, I went into the doctor, expecting to be told I had lupus. I had decided in advance that if he gave me that pleasant bit of news I was going to demand prozac on the spot. In fact I was going to demand it be brought to me in the examining room. Immediately. In large quantities. Maybe I was on to something with that plot.