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Scleroderma & Raynaud's UK (SRUK)
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Does anyone live in the states?

I’m new, does anyone want to chat? Was told I have Scleroderma & Raynauds just a few days ago. I’m 61 live alone in the states, widowed and looking for someone to talk to to explain a few things to me if you can. Kinds caught off guard

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I also have Scleroderma and Raynaud's and live in the States.

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Hi! Thanks for responding, seems like everyone on here is from across the pond (which is fine, of coarse) . I was just thinking as far as doctors go and stuff....I just found this site a few days ago when I found out I have scleroderma and Raynauds. At least I understood why I have been in so much pain and loosing interest in everything I used to love to do...because of the pain. How long have you known? Are you single having to do everything yourself or married? I wish I had someone close to where I live to be able to meet and chat. I still drive and go places which I will continue to do till I no longer can. This is all new to me.

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Hi Danielleee

😊🌿🌸🦋

Welcome dear. I’m in Michigan. I’m soon to be 68 and I have Raynauds Phenomenon and Inherited Erythromelalgia.

I will be married 50 years this September.

I’m housebound. Don’t drive anymore unless an emergency.

I’m sorry you’re alone but would love to chat with you.

I’m having super fatigue problems and nod off like narcolepsy so my replies may take a while but I try to answer all received.

So sorry about your diagnoses.

Confusing and concerning to get diagnosed with both I’m sure.

Abundant blessings dear.

EJ. 😊🌿🌸🦋🙏🤗💗😘😇🕊

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Honey bug I’ll defanately get back to you sweetie!

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Thank you sweetie we’ll chat then for sure.

EJ xxx

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Hi Danielleee, I moved from England to Florida last August with my husband, so I’m on your side of ‘the pond’.

Finding out you have these conditions can be shocking. I cried for about four days, then came the relief that I finally had a face to put on the conditions I’d been suffering from for sooo long. I’ve had lots of complications, but a positive attitude helps immensely!

I’m not sure where in the US you live, but I’m always willing to help out if you need a sympathetic ear, or some advice.

Best regards,

Mary

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Thank you Mary! I live in Florida also. Just found all this out last Thursday, and yes it is very shocking. I’m glad you replied, after I have the rest of my tests done I might need your sympathetic ear and advice. They have support groups on the east coast of Florida but I’m on the west coast and still looking. I live in the Clearwater area maybe I can find something close. Again thank you for responding it’s nice to know someone is out there, I live in a 55+ neighborhood where everyone has aches and pains but I knew something was not right. I didn’t want to complain to my neighbors because nobody wants to hear that...most people probably never heard of it “ I know I didn’t”. Well, I’ll just wait and see after the next appointments. Take care of yourself. You’ll have to tell me about your complications later,...stay safe, Gloria

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Hi Gloria, thank you for your email. I imagine you’re going through a rollercoaster of emotions right now. Upset to find out you have this condition, but at least now you have a name for why you feel so awful some days. Having the right attitude goes a long way with dealing with it. Be sure to get yourself a good rheumatologist, and that your Primary Care physician is knowleand caring! Both extremely important factors in handling issues effectively when issues crop up. I’d also suggest a really good physiotherapist for reducing your pain.

I’m also living in a +55 community, but we are about an hour north of Orlando - perfect for accessing the airport.

Clearwater is beautiful! We stayed at the beach for a couple of weeks when we arrived last summer from England. Perfect weather, and great for walking.

We are taking some of our family from England to Disney World for a week from Monday, but I’ll have connectivity to internet if you’d like to ‘chat’.

Good luck with the tests! Do keep me posted on how you’re doing, or reach out at any time if you’re feeling anxious, or overwhelmed.

Mary 💃

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That was meant to read: ...knowledgeable and ...

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I live in Phoenix, AZ, in a 55+ community. I’m married. I have Raynaud’s and Diffuse Scleroderma overlapping into Limited Scleroderma. My first symptom was blue hands in 2010 - I lived in the Orlando, FL, area at the time and was misdiagnosed as having RA. Lots of things were happening to me over the years and it wasn’t until I got complete antibody testing in 2017 that I got a correct diagnosis and realized that everything was related to Scleroderma. It’s important to find a really good Rheumatologist who specializes in Scleroderma. I’m happy to talk to you any time.

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Thank you so much for the reply! So far I think I have a good Rheumatologist my PCP referred. He did blood work and knew in a week. I worked for the post office and crushed my left hand in equipment (had many surgeries) my left hand and fingers have been turning purple for years since the surgeries. They said I crushed the blood vessels in the accident. 2004. Never heard of scleroderma in my life. I just figured I was abusing my body by doing everything with my right hand and right side of my body for so many years is why I was always in so much pain. I told my PCP how much pain I was in and something wasn’t right...so now I’m off to find out things I know nothing about. My 13 year old grandson comes down to see me every summer...I just pray I don’t worry or disappoint him.! I’m only 61 shouldn’t be feeling like this already😢

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Hi! I live in Georgia but visit my dad quite often in Venice Florida hope to move down that way soon. There’s another site called inspire.com where there are lots people from the states. It was a miracle I found that site and joined a year ago because I found out about a antibiotic treatment that was helping people with scleroderma go into remission. I’ve been on the antibiotic protocol for about 9 months now & doing so much better! Go to the roadback.org to find a doctor close to you & to read others success stories. I had systemic scleroderma for almost 3 years before finding out about it. I think my situation would have not gotten as bad had a found out about it sooner. But I’m still fortunate I did. My energy is back, saliva glands back to normal after one month. Ulcers on fingers cleared up and mouth looser. Joints feel better too.

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I’ll definately check out that site...thanks

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Yes Danielle I do. New York State.

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