Scleroderma & Raynaud's UK (SRUK)
6,959 members3,297 posts

Feeling overwhelmed

Hi All,

Not having a good couple of days.... Just wanted to ask if anyone else has hot feet and discomfort on the balls of their feet ?

Its so uncomfortable whether i'm sitting or standing. and I can't bare even the weight of the duvet on them, Also my hands feel tight and pins and needles wake me up at night... I'm still learning about Crest and can't believe this will be my life from now on.

I know from here some are way worse off than me so sorry if I sound self absorbed...

Feeling sad.

Cathie

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Hello catkar, sorry to hear you are having a down time, this condition, because it is so complicated can surprise us with new symptoms or existing symptoms get worse!!!! The symptoms can send us to distraction sometimes. A long time ago a friend I had used to use mind over matter, when she got really cold she used to think of roast chicken! yeah I know sounds silly, but it worked for her, so perhaps thinking of a long cool drink may work, who knows, its worth a try! Our symptoms are all relevant to ourselves, so when we have a flare up it seems like the worst thing in the world, nothing wrong with feeling like that. You will get through this, it just takes time, so rest as much as you are able to and know that you are not alone, sending you hugs, and smiles and waves xxxx

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Fairy56,

Thank you so much for taking the time to reply, I know from your posts that you've been having a terrible time of late.. .i'll try the technique and see if it helps ... Its the 1st anniversary of my mum passing away today and I miss her so much, so probably not helping my frame of mind...

Thanks again x

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I"m so sorry to hear that it"s a painful day for you. It is good to grief, but also it is a time to remember the love you felt for your mum, she will always be with you, xx

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Hi Catkar

Sorry to hear that you are having a bad time.

I have problems with my feet, I feel like I’m walking on nails, I try and wear shoes that have thick soles and I love my UGG boots cos they are so well padded. As for the duvet I used to have that problem and could not have the duvet on my feet, so the duvet was folded back slightly to give my feet freedom (wear bed socks though to keep feet wrong). Hope the anniversary of your Mum went ok, as fairy56 says ‘smiles and waves’

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Thank you..... Now if only it would stop raining ..

Cathie x

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Hello Catkar: sorry to hear you are so uncomfortable. I have similar trouble with my feet. They are awful every night in bed. I'm OK all day - I was prescribed compression hose (knee high) several years ago by my GP for swollen ankles. The swollen ankles went away when my blood pressure tables were changed by the hospital. However, I find that during the day the compressions socks (I hate them) seem to hold my skin together. When I take them off at bedtime the skin on my feet starts 'screaming'. I feel like there is tight string round my ankles and that my skin will split. It's not horrendously painful but it's a constant sensation all night and by morning my feet are red, hot and sore. I'm glad to get up and put my horrible sock things on again. My scleroderma is worse on my feet and lower legs than anywhere else.

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Hi Betsie,

Thanks for your reply, sadly I don't think anyone on here deserves any of it... I wish you well.

Much love Cathie x

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Hi Katcar : sorry you to hear you have to go through such a pain. I do not have pain at my feet but my hands are very sensitive. It hurts when I hit my finger just a bit on something. I know how it feels. It hurts so much on the cold days that you don’t want to touch anything. I suggest maybe trying to find some fluffy shoes like UGG. They help me a lot. I hope you feel better soon. I understand you feel down but do not let them take over your head , we are all beside you. Take care

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Hi Sa,

Thank you for your reply.... Sometimes I just feel like I can't stand the thought of this forever more... I have got Uggs but you can't wear them to bed ! lol.. My toes are numb and white all of the time... I'm sure that I will accept all the different ailments in time but its just such a lot to digest..

I am grateful for all the words of advise and encouragement.

Thanks to all

Cathie x

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Hi I have a lot of problems with my feet and can't seem to regulate the temperature. Either on fire erythemyalgia or painfully cold from the reynauds . Also the pain in the ball of your feet could be a mortons neuroma I have it in my third web space. it feels like you are walking on rocks in your bare feet. I have special insoles for it now that definitely makes it less painful. X

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Hi Shauna, Thanks for your reply.... What sort of special insoles do you use ?. I've looked up Mortons neuroma, and I don't think its that... I think it might be the collagen thickening on the balls of my feet....

Cathie x

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I get them specially made by the hospital. They stop you bearing too much weight on the part of your foot that is causing the pain. The sole of my foot is thickened also but they said that this is due to me putting too much pressure on that part of the foot x

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I also have flat feet which has caused all of this and the neuroma which I had diagnosed by MRI. Has steroid injections in my foot initially but wouldn't recommend this as its only a temporary fix and caused the front of my foot to sink x

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I have similar problem. Either very cold with Raynaudes or fiery with erythromyalgia (sp). Only the tops of my feet are effected with the red hotness. The worst is putting them into any kind of water which is a tough one because stinky feet are no way to make friends and influence people!

Only my soles are affected by the cold

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I have the same problems with temperature x

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Hi Lupiknits

I often have to use a product that is used by the USA astronauts called No -Rinse Body Bath. It cleanses without rinsing smells pleasant and easy to use. You can use it for just your feet without dipping them in the water. As soon as you wash dry immediately.

The only contact info I have is:

CleanLife Products

868 Pleasant Valley Drive

Springboro OH 45066

Reorder#00910

1 800 233 9348

norinse.com

In 2000 I fell and injured so many things resulting in a short leg. I found this product at the hospital and started using it, been a fan of it ever since. I hope this is helpful.

Best wishes 😊🌸

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Thank you so much. I see from Amazon that we have products like that. I'm definitely getting some.

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My pleasure. Sure hope it brings you relief.

😊🌸

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Hi Lupi,

Thanks for your reply..... It helps knowing its part of the syndrome and i'm not alone x

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Hi Catharine

I just found your post. Do you have fibromyalgia, neuropathy, or erythromyalgia? I get your symptoms and I have all of these conditions. I am sorry you are suffering so. I send you cyber hugs and love.

😊🌸

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Hi Honeybug,

I have seen a neurophysiologist who said my nerves in both legs and arms weren't working properly and I am now waiting to be referred to a neurologist.... He asked if I was on Warfrin or Aspirin but at present I am on neither... All this waiting for tests and results is taking forever..

I thank you for your hugs and sent back in return .

Cathie x

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Hi Cathie

I’m sorry you have to wait for a referral. It is miserable during wait times. Hopefully the time will pass by quickly. Take your notes on your symptoms durations and weather conditions etc. so your Neuro will have those details to help in his decisions. Don’t forget that your buddies here are wishing you the best. I am here for you to give you empathy and support if you need me.

😊🌸

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