Scleroderma & Raynaud's UK (SRUK)
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help me please ! it's been more than a month

help me please ! it's been more than a month

can some one help me please :(

i'm having 105 heart beats per minute all the time for the last month ! right hand and my two legs turning blue cold sensation fatigue and body inner shaking! than after that things started to change from blue to red and then bruises to armpit pain ... paralysis for minutes ! blurred vision

weird bowels multi-colours sometimes with bloody mucus sometimes yellow and each time different ! i get bowel movement only after medicine and every 3 days almost i don't have a rash only skin colour changing ! i feel something squising my stomach and dizziness and nausea follow ! i lost at first some pounds and now i'm regaining them ... but i have huge back pain specially lower right side even while sleeping ... blood pressure is rising from day to day but i feel kind of better ! and all i get is anexiaty disorder without even having all the tests !!!

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Hi MLaoun❤️❤️❤️❤️🌹🌹🌹

I just prayed for you dear. I hear the panic and desperation in your post. My name is EvaJo let me give you some much needed hugs and kisses 😘 😘😘😘🤗🤗🤗🤗🤗😘😘🤗🤗😘😘😘. Please take a deep breath and release it slowly. I’m here for you and you need to calm down so we can talk. 🙂💕🌹🌸🌺🦋

The picture of your hand looks like mine. My doctor called it mottling ...most likely due to your Raynauds.🤟🏻💕💕💕💕💕💕💕

I too have a racing heart and when it beats so fast it gets scary. My resting heart ❤️ beat is 120. When this was new it felt like it could fly out of my chest...it makes you feel strange all over and tired. 🦋🦋🦋🦋🦋🦋🦋🦋🦋. The other symptoms sound like they are maybe the scleroderma (which I haven’t been confirmed as having ) but feeling cold and turning blue are symptoms of Raynauds. 🌺🌺🌺🌺🌺🌺🌺🌺🌺🌺🌺🌺🌺🌺🌺🌺🌺. First of all M you have to calm yourself down Tell yourself that you’re going to be alright. When you get anxious and scared it causes stress which negatively affects our systems and is bad for the ❤️ and raises our blood pressure. Let me assure you that I truly care and I’m with you thanks 🙏 to this wonderful technology. You poor thing. 🦋🦋🦋🦋🦋🦋🦋🦋🦋

I am so sorry you are suffering so much dear. You are not alone...everyone on this site is too Having illnesses we don’t understand is scary but you have to remind yourself that you are strong and you will be able to find help here by others who have gone through your symptoms too. There are so many wonderful people here who will help you comfort you and truly care about you. You will find ways of coping and learn a new normal way of life. 😊😊

🌸🌸🌸🌺🌺🌺🌺🌺🌸🌸🌸

You need to take care of yourself try the heating pad or electric blanket/wrap when you’re so cold. Call family or a good friend to be with you when things seem unbearable. Try to listen to soothing music or watch a feel good movie. If you hyperventilate breathe into a paper bag until you calm down. 💦☂️💦☂️💦☂️💦☂️💦☂️💦. You’re gonna be better when you calm down sweetie. 💕💕💕💕

Take care and God bless you.

😊🌸 🤗💕xxxx

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awwww !! you are sooo sweet ! 😍😍thank you truelly i appreciate it 😘and i do too give lots of kisses 😘😘😘😘 but i was wondering .. that after the blue and cold sensation .. lately things have changed ! u see i get extremely warm and start sweating my palms turn burning red but i still have each hand different colour i do feel like something sneaky is going on that my body is hiding ! and i couldn't do all tests bcz it cost so much! that is when i started google search so that i might be abl to recognize something similar to know which doctor to seek .. who will not give me anexiaty pills ! i'm a peaceful person i barely get angry! but i won't lie it freaked me out at first specially the extream blue hint! but i don't see any blue hint anymore i'm turning as red as strawberries 😛😂😂 hehehe and very very hot! i think it might be something in my intestines or some sort of parasites that might have lived long enough to do that ... and i might be also wrong about it .. but i'll get a test tommorow .. i'm thankful for your kindness you are such a sweetheart ❤❤❤ i pray for you guys may the lord release all your pain and fill your life with happiness!! i wish i could show u more pictures but i can't in this website

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Hi again MLaoun 🌸🦋🌸

Sorry 😐 I didn’t get back with you sooner my brother called and just had to talk to me about how overwhelmed he is with everything. ☹️😊🌺🌺. He just hung up the phone. 📞.

🌈🦋🌈🦋🌈🦋🌈🦋🌈

Thank you for the sweet

response how much I needed those hugs 🤗 and 💕too.

🌸🌺🌸🌺🌸🌺🌸🌺🌸

You mentioned about your hands getting hot plus still having one be blue I know this sounds crazy but I have these symptoms too. What I think you may be going through is simultaneous Raynauds and Erythromelalgia. I’ll explain:

My duo symptoms are cyclic now. Whichever one comes first the other follows. 2days ago I had the heat swelling and pain of EM all day long. Then yesterday I froze all day long. ☹️ We had really bad weather here in Michigan USA 🇺🇸.

🌸🌸🌸🌹🌹🌹🌹🌸🌸🌸

The Erythromelalgia is a blood vessel and blood disease. My version of is the worst because it’s Inherited which is triggered also by salt which the primary kind is not. Both kinds are triggered by stress weather illness exertion too hot sometimes who knows what.

My version I am one of only three people in the world 🌎

with it. 🌎🌎🌎🌎🌎🌎🌎

For me I have difficulty walking because my feet swell so much it hurts to stand let alone walk on them. I have even had my body divided in half equally and Erythromelalgia on one side while the other had side had Raynauds. This was so strange to say the least.

🌸🌹🌸🌹🌸🌹🌸🌹🌸

Your picture looks very young how I feel so badly for you to have these symptoms so young. So was I because I was born with both present. With my Erythro EM for short my whole body turns red like a cooked lobster. When my nose used to turn red I used to say I was Rudolf the red nose reindeer’s sister. 😆🤣

💕🌸💕🌸💕🌸💕🌸💕

I’ve not been tested for Scleroderma yet so I can’t tell you about it but there are others on this site who can. 😊

Feel free to put your post out about it and others will be glad to help you.

💦☂️💦☂️💦☂️💦☂️💦

You have been so sweet and kind. I hope I have been helpful. Feel free to contact me whenever you want to. I will be glad to have a little chat.

One more thing try to stay positive about things. You can stress yourself out thinking the worst about things. This effects so many body functions negatively that it will cause illness or make existing conditions worse. I wish you the best please take care and God bless you sweetie 😘❤️

🌸🦋🌸🦋🌸🦋🌸🦋🌸

😊🌸 🤗💕💋

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mwahhhhb thank you so muchh !!! <3 you truely have been very useful i'll contact you soon just to check on u 😚😚😚 you actually have a nice way to calm down someone 🤗

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MLaoun so glad sweetie 😊😊

Look forward to our chat very much. You take care. Much love and hugs

🤗💕🤗💕🤗💕🤗💕🤗

😊🌸

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i wanted to ask you one more question about what u said i was reading about it now .... the scleroderma could happen and not be shown in blood test?? how can i check for it? it might be possible tho ! thank you so much for your help

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Nailfold capillariscopy is another test for connective tissue disease x

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The_Bear🐻

Thank you for the info. Is this painful and does it take very long to do?

😊🌸

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They look at your cuticles under a microscope :) doesn’t take long and painless. They checked my circulation too which meant dipping hands into freezing water for a duration then taking a heat-sensitive camera photo - that was a bit unpleasant (freezing) but temporary :) I’m not sure of prices but I’d imagine it wouldn’t be too expensive

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Thanks so much for the info The Bear 🐻. I will try to prep myself for the freeze... brrr!!! Take care and God bless you 🙏

😊🌸 🤗💕xxx

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so what should i ask the lab for? and what should i say?

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the skin? no it's more like or freeze or burning ! not itchy ! my joints and bones are the ones that causes pain ! specially the right arm i have this back pain and the bones around the heart causes huge pain if touched !

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I think a rheumatologist will be the best to advise what tests to run - have you seen one?

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is it a nerve doctor or like dermatologist???

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It’s a doctor specialising in Rheumatological conditions (whole system, like arthritis or scleroderma).

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