Raynauds - misunderstood and affecting quality of life

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Hi guys

The docs diagnosed me with raynauds about a month ago

But I also suffer with other symptoms of being cold, the slightest bit of chill and I'm freezing

I sit Infront of my halogen heater all night and have my electric blanket on high all night through to the morning

No one seems to understand the pain it causes me, being so cold.

I've never met anyone who has raynauds and feels like cold like I do

I wear thermals all the time and jumpers but I can't see to stay warm

I'm active and eat well and I'm only 23

got not underlying problems for raynauds

I think perhaps I have a cold intolerance too?

Does anyone else feel isolated ?

I sometimes dread social events because all I can think about is 'will I be cold?'

It's really sad and pathetic and I get ridiculed but people just don't get it sad

Wish I could wear lovely clothes when I go out with friends or my boyfriend

I just feel frumpy and woolly and turtle necked to the high heavens September till may

I know other people have such massive issues compared to this and it may seem quite ridiculous

Just looking for some similarity! X

2 likes, 11 replies

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11 Replies

  • Posted

    Hi sydelle. Was it your GP who diagnosed you because if it was I would ask to be referred to a consultant. You can't carry on with these problems and you have no quality of life. 
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    • Posted

      Thankyou smile

      I went to the doctors today and she suggest to see the rheumatologist X

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  • Posted

    I can relate to what your talking about 100%, I'm cold pretty much 24/7 and rarely am not wearing gloves even indoors. I always feel I'm misdiagnosed with raynauds aswell, as raynauds mostly affects specific areas like hands and feet, unlike what we have which is whole body coldness. I've been like this since I was about 12, so I know it's not a temporary thing as here I am still shivering aged 16.

    I would recommend you request a blood test at your doctor, and ask them to check for an iron deficiency. I'm slightly anemic which I think affects my cold tolerance, so it would be worth checking. 

    I know it's not fun being cold all the time, but keep your chin up.

     

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    • Posted

      Hi arm

      My iron levels are fine

      So are thyroid etc but I went to the docs again today and she suggest seeing the rheumatologist so just waiting for my letter through the post! Maybe you should give it a go?

      I was like you at 16 and as I've gotten older or has gotten worse, I'm 23 x

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  • Posted

    Hi Sydelle. You have my sympathy. My symptoms are similar but not nearly so bad. Beyond the wooly clothing, I found two things that helped a lot: avoiding anti-goitrogens and eating Bearded Tooth mushroom. See my separate post here for more info.
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  • Posted

    Hi Sydelle, did you get your iron levels checked out as previously suggested? Not having enough iron would add the problem. Just make sure if you take it include vitamin c so it can absorb properly in your blood.

    My best

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  • Posted

    Hi, Sydelle smile

    I have to cope with the same trouble like you. I have been cold in wintertime since I remember. Two years ago I had my first attack of Raynaud. It was rainy day in march or so (actually could it be the beginning of april, can't remember) and later I forgot that cause never happened again. Last winter I had probably few attack (always just one finger and I didn't really care cause it was like two or three attack during all the winter period).

    Last summer I moved to UK (I'm Polish) and in the end of November Raynauds startes with me. Always on rainy and cold day. I had attacks very often. I came back Poland in the end of February and I have to say that it is better in here cause the air is more dry. I think Raynauds is associated with wetness of air as well not only the coldness. I'm worrying for my health for now cause I haven't seen the doctor. I didn't wanted to go in UK cause it was always like lack of time and I had irregular time of work (like a waitresses usually have) and it was so little time I was going to stay in UK that it didn't make a sense for me to start the treatment. Now I going to go see the doctor and I want to go for capillaroscopy (or so, not sure how I should say this in English) and then blood test for ANA antibodies. I am so afraid that I can have underlying disease. It would ruin my plans for the future sad

    Did you go to rheumatologist?

    Keep yourself warm as the summer is closer and closer smile

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  • Posted

    Hi I am paul I am feeling for you I understand that y want to look good y could get trendy winter clothes not look frumpy  re understanding that's what this site is for people on this site won't think you are ridiculous!!!x

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  • Posted

    Hello Sydelle, this is me to the T. I actually was just speaking with my mother about how when I'm cold it's almost like having a flue symptom were your so cold it's painful. For me it's like it hurts my bones almost I'm so cold. And I can't stop shivering untill I wrap up with a lot of layers and blankets. Just like you said too, people don't understand. My hands are almost always freezing. I hate getting dressed in the morning and I can't touch my baby unless he has layers on in fear I might make him cry with my cold dead person hands. Also question for you!? When you get emotional do you experience this coldness as well? For me especially when I'm angry or have my heart pumping I sware I can feel my body drop in twenty degree temperature. It's sad honestly to fear fall and winter but I do. I'm very happy though I've found I. Not alone

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  • Posted

    Hi all, I think I have raynauds, it's started at least 10 years ago and I only noticed it when we took our son to football on freezing Sunday mornings, my fingers and toes would go white and numb but the pain was unbearable, Iv had a lot of other health issues so havnt really focused on this so much but the past few years it has become worse, in the winter I get sores or chillblanes (spelling?) on the sides of my fingers.

    Reading through the replies what I found similar is from being a young child I have always been extremely cold, it was a standing joke in our home😂 anyways that has not changed.

    I have back issues..lumbar fusion, thoracic arachnoid cyst, cervical spondylosis, now just the other day I bought a massag machine to help with the muscle pain and spasms in my back and what happened when I used it is my hands have become so unbearably itchy all over for at least an hour at a time, it's almost like nettle sting or prickly heat and I'm wandering if this is because the blood is starting to reach places it has been in a while (haha) I also wander if ray aids is a cause of the cyst that compresses my spinal cord? Just wandering if anyone can shed any light, thank you😊

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  • Posted

    I always thought the older you get the less you can tolerate the heat and cold and this is the first time that I heard someone say that their body temperature is effected by Raynaud’s because I’m the same I can’t dress warm enough and I’m still cold and it’s the same in my house dressed warm in front of wood burner and still cold
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