SLE, Raynaud's And Sjogren's Together
Nov 14, 2013
I have the SLE-Raynaud's-Sjogren's package of auto-immune illness (listed in the order of diagnosis). The Sjogren's is the latest and most burdensome flavor of the decade for me. I was diagnosed with it about 3 years ago but was probably suffering from it for several years prior before the symptoms persisted enough to result in a diagnosis. I guess that's typical. It was with the SLE and the Raynaud's.
I can't imagine it could get any worse, but I get the impression that I might be "early" in the cycle and that scares me. No tears, corneal erosions, no spit, heroic (expensive and painful) dental treatments to save teeth that may already be doomed, pain, fatigue. Little annoyances that by themselves are "nothing" all together its a spirit crusher. Can it possibly get worse?
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I am 14 nearly 15 years old and for as long as I can remember i have had this problem and my father also has the same problem but I seem to have it on a much larger scale.
My feet do not warm up naturally, even in bed at night they are freezing cold and if it is cold outside my feet are purple and I have very blotchy looking skin on them and my hands, when they are like this they look like the feet of a dead person.
Also, when it is cold, my hands go white, purple, and then bright red. They are numb during this and when they become bright red, my fingers swell slightly and it looks like they are about to burst. Also at this point, if I touch my hands or fingers together, they will sting and the pain is unbearable, it feels like stepping into a hot bath after being in the snow all day, but 10x worse.
I haven't yet been to see a doctor although I know I probably should. The problem with my hands doesn't affect me unless it is unusually cold, mostly during the winter and the problem with my feet is constant, during all weather and all seasons. I have had multiple friends and family members say it could be circulatory problems but I am yet to know for certain
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I was diagnosed with raynaud's back in 2010, but have suffered for about 7 yrs - I'm currently 36. I suffer with typical raynaud's in my hands & feet, they get cold whether it's been outdoors to walking in the fridge isle of a supermarket to holding cold cutlery and now even when I get out of the bath/shower. Back in 2010 my bloods tested positive for the antinuclear factor, so it suggested I had a connective tissue disorder, but with no other symptoms other than raynaud's was left as that. However, I've recently started getting pain in my finger joints - the pain is unrelated to when I have a raynaud's attack. I've been referred for further bloods & X-rays. Anyone else suffer with secondary or similar to my symptoms?
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I have trouble writing, cooking, even sleeping and living a normal life generally due to my cold hands.
Has anyone found and eventually bought any gloves that helped hands get warmer and be able to work with them on as well?
I am a student and I have great trouble to do my work.
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Let me introduce myself as a 57 year old male living in Minnesota. We are currently experiencing one of the longest sub-zero cold spells in my memory. 55 days below zero degrees F already this winter. Yes it is very COLD.
Twenty five years ago, in my early 30's, my fingers began blanching white while carrying items during summertime. I was frightened when several visits to the doc hadn't helped. Carpal tunnel syndrome was ruled out. At that point a neurologist asked if I was a smoker. Yes I was, two pack-a-day. He looked at me very pointedly and told me I'd better quit smoking ASAP. I was crushed, I had tried many times to quit cigs to no avail. I looked down at my white fingertips and bluish toes and decided to quit then and there. That was my last cigarette. Sept 1989. Miraculously, I never saw a white finger tip or blue toe again.
Twenty five years later my left hand has been suddenly reminding me that there is still an issue. Two or three fingers remain cooler than the others and will empty of blood when carrying parcels, or squeezed. Slowly the pink returns. I do not smoke. Hopefully that will keep the symptoms limited.
Someone had posted that what affected you in youth is probably gonna come back to haunt you later in life.
Young people with raynaud's; Quit smoking! Don't move to arctic climates, either.
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Is there anyone who has both these conditions? And if yes, do they flare at the same time?
I have had raynaud's since a child (am now 57). I think erythromelalgia has been gradually getting worse since perimenopause began in the early '90s.
But only over recent years has this gradually gotten so bad that I'm relatively lame and housebound
My feet, hands and face are affected. The feet are worst. The NHS rheumy tried my on low dose vasodilator which had to stop cause it made all my symptoms much worse, apparently permanently.
When both conditions flare together my feet are sort of the colour of raw meat. This has been happening daily for nearly 1 year.
The erythromelalgia association website is v helpful, but even on the raynaud's & scleroderma org website it's hard to find anyone with EM, let alone both EM & RP.
If you are out there and have any tips for how to manage these 2 conditions.
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I read on the RSA website that Magnesium supplements may be useful in Raynaud's. Anyone got experience of using it, and how much to take?
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I've been having various health problems over the past 8 months. However, one symptoms that I have been having is purple knuckles. I was curious to know if anyone has raynaud's only in their knuckles? It heavily affects the top knuckles closest to the wrist, especially the one on my pinky. However, all the knuckles have been affected at some point. The main reason I don't believe it's raynaud's is because it doesn't affect the top of the fingers at all and I don't have any other color change except purple. It doesn't happen every time I am cold and they don't seem to hurt or tingle when they change colors.
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As a chronic migraine sufferer i'm just wondering if there is anybody else who also suffers both migraine and raynaud's? Maybe some sort of connection?
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At the age of 79 I became aware that the pads on the balls of both feet felt tight and a bit puffy and hardish. Then gradually I experienced a sensation in my toes which I can describe as tingly. This area of both feet became susceptible to cold and required contact with heat pads to feel more comfortable. No pain is experienced. Walking seems to alleviate the tingling sensation. After a visit to a G.P. Raynauds Syndrome was confirmed and keeping the feet warm at all times was advised.
Although I live in a well heated bungalow I take heat-pads to bed at night.
In the morning my toes feel quite warm and look rather pinkish red. This condition doesn't affect my normal activities in any way after a year of beginning. 8)
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I am currently a 21 year old part time student and full time worker, my symptoms started off with Raynaud's and have progressed. I feel like every time i go to one doctor i just get referred to a different one. I am miserable, and i can't afford to go to all these different doctors. I don't know where i should go next. A few years ago i was tested for rheumatoid arthritis, lupus, and my thyroid has been tested all have come back negative.
My symptoms are:
Numbness, tingling, burning in fingers and toes
Toes turn red when hot or at night and burn, blue when cold, purple in the shower
Cold hands and Feet, Stiff Fingers
Clammy Hands
Legs, arms, feet, and hands fall asleep very often
Stinging in legs, legs sensitive to touch, sometimes I will have the same sensation in arms but not as often
Runny Nose every day especially in morning
Dizziness/ out of it feeling, (happens randomly), always dropping/breaking things (may just be clumsiness or sweaty hands)
Weakness, Especially in legs
Stiffness in legs
Knee Pain
Odd Sensation in right knee
Face gets flushed often
Nose turns red all the time, if I'm cold, if I'm hot, if I drink, doesnt hurt but is embarrassing
Right lymph node swells randomly
Abnormal stools/ mucus in stools
Diarrhea was getting it very often, recently its been better
Stomach bloats after eating, Stomach pains and cramping after eating certain foods
Cannot get comfortable in any temperature I am always to hot or to cold, mainly have trouble staying warm except for at night
Always Feel like I havent gotten enough sleep, I have the most energy in the morning
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I have recently been experiencing symptoms of raynaud's so I'm wondering if there's any link.
Last check all my thyroid numbers were good and been feeling good with that.
My thyroid antibodies were in the normal range when diagnosed, so not sure if that means mine is not autoimmune or if Raynaud's is auto immune?
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I have being in and out of the hospital for my asthma. But for the last month or so my hands/fingertips have been going White on me it will do this when I'm outside or when I am at home or in bed sleeping. I wake up with pain in my feet and my fingertips. My doctor thinks it may be Raynauds but does not understand why it's happening when I am sleeping or in my home. Can I get some people's thoughts on this? and if it is Raynaud's what can I do to help myself with the pain in my hands/fingertips feet?
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If someone in your family has raynaud's should I be tested.
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Interesting diagnosis. I have Raynauds and diagnosed with prinzmetal angina.
My Dr says there is no correlation.
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i have Raynauds. I am not taking any meds so far. It is more related to anxiety then cold. But cold affects as well. It started in my hands but now seems to be in my feet. They get white and blue. And when I wear shoes my feet get numb. I've had all the tests for diabetes and nerve damage and that's all negative. I'm healthy. I run outside for 38 years. I don't drink or smoke. Drs don't believe this is from Raynauds but I do.
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My partner got this the same time as me. Is this something that normally happens?
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I'm 36 now and was diagnosed with Raynaud's when I was 16.
The last few years I have slowly been getting worse. My hands and feet are always blue regardless whether I'm hot or not,changing colour (red,white) depending on the temperature. The aching joints are better as I put myself on cod liver oil and have been for a year and a half. I've also been going to a gym for that time too.
Does anybody else get excessive sweating! I have had other medical problems and I wasn't sure whether the sweating was connected to that or this but my GP has said it's a part of this.
My problem now is the swelling in my hands whenever I use them. Gripping becomes hard work and simple chores such as peeling veg! I am also so tired all the time. I swear I could sleep on a washing line!
My GP put me on Nifedipine (Coracten) but I can't stand the side effects. This is the second one I've tried and I am going back this week to see if there is another to try.
I am not giving up I want a full a life as anyone and not to look too freaky with blue extremities. I am going to keep trying with the GP until it's all been exhausted.
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Let me tell you I had full blown Raynaud's. I'd need roughly one hour recovery from an attack. Blue fingers white fingers, pain - the lot. I've got low blood pressure so I can't take medication. I have to go to hospital for a week for iloprost infusion. Anyway let me tell you what cured me. I take 3 pills. Butcher's broom, odorless garlic and gingko biloba. I had been taking just Gingko (which didn't work) but I was advised to take Butchers Broom in Holland and Barrett, they also said buy fish oil but I didn't like the thought. Anyway, it's only been 5 days but you could describe me as having bad circulation now but not Raynaud's. I've washed my hands with cold water, gone out without my mittens and I'm ok. I went to an event and minutes after entering I was shaking hands. My hands were warm!! You cannot imagine what it feels like to not have cold hands anymore. I was ready to saw my fingers off. This 'spring' has been awful but now I'm no colder than anyone else . Please buy these natural remedies, it'll change your life.
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My doctor put me on nifedipine 30mg for my Raynauds but was not helping. So she put me on Diltiazem 60mg has anyone been on this for there Raynaud's? If so have you had side effects like your insides are jumping around and jittery/shaky hands?
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I was diagnosed about 4 months ago. It was a discussion about my symptoms but no tests were done and I was prescribed Nifedipine but like many, I suffered nasty side effects so stopped but I didn't feel that it helped my pain. I have never had the colour changes or swelling and I never have any pain at night. When I first get up in the morning my feet feel perfectly normal but once I have been on my feet for 10 minutes or so I feel them start to feel sore and as the day goes in the stinging gets more severe and is coupled with severe aching in the balls of my feet and episodes of them wanting to cramp. Does this sound like Raynaud's?
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