Scleroderma & Raynaud's UK (SRUK)
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Raynauds - help?

Hi, I was diagnosed with Raynauds back in January 2017. I was given a leaflet which referred to arthritis and had a section referenced to Raynauds, but apart from that I have no knowledge of the condition. I'm currently experiencing many problems with my health and my GP has put it all down to "health anxiety". Regardless of the cause, I am suffering and my mental health is now affected. Could anyone advise me on what can be expected when someone is living with Raynauds? I had the capillaroscopy which didn't show anything of concern and my FBC came back 'normal'. I also live with Trigeminal Neuralgia. Any help/guidance/advice would be much appreciated.

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Tell us what you feel and we will answer.

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Hi Zenabb, I have very dry, tight skin on my hands - especially my left hand - which becomes red raw, cracks and splits (looks like psoriasis). This happens when experiencing cold or stress. My upper back muscles ache so bad that sometimes I struggle to walk. I have an existing back problem with my S1/L5 disc bulging but this current aching is different. I constantly feel tired after doing the simplest of tasks. I've been losing quite a bit of hair recently. My vagina is incredibly itchy and constantly cut despite not having sex - this is becoming an issue in my relationship as we were planning on having my coil removed and trying for a baby - I already have 2 children. This has been a problem since August 2016. I've used fucidin cream but no improvement. I've also had what looks like fungal nail infection covering a toe on each foot for the past couple of years - antibiotics (Terbinafine) haven't worked. In the summer, when at the beach in flip flops, these toes turned to chilblains. And whilst on holiday in Rome, my feet looked like they'd been badly burnt with terrible pain and swelling in my legs and incredible pain in my hips. My digestive system has been problematic for about the past 19 months - around the same time my Raynaud's developed. Some days I look 6 months pregnant due to the bloatedness. My doctor diagnosed this as IBS. I have also gained a stone (15lbs) in weight in that time, despite eating less calories. A couple of weeks ago I woke up with a stiff neck, which was troublesome for about a week before easing. A few days later I got out of my car to walk to my office and could hardly walk the pain was so bad in my back - I likened it to whiplash. A few days after this I had a Trigeminal Neuralgia attack. Within 24 hours of this attack I developed a swollen lymph node (same side as my TN attack) which was slightly larger than a golf ball and was numb - no pain. I had my bloods taken (FBC, ESR and CPR - don't know what these are for) and my dr said all was normal so nothing to worry about. The swollen lymph node was probably due to an infection. The lymph node has reduced in size now. Some nights I wake up from night sweats - tests for menopause showed that's it's not that. I feel my body is slowly fighting itself, bit by bit. Just need to know if any of the above is normal to Raynauds? Any help much appreciated.

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Do you have a rheumatologist? You seem to need to be properly diagnosed.

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Yes, I saw a rheumatologist back in January and am due to go again in January 2018. Just feel as though there's no help with how I'm feeling. Thanks

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so what did the rheumatologist say (advise).

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Keep warm, wear gloves when getting any food from the freezer and prescribed nifedipine, which I can't take as I have low blood pressure. I'm seeing him again in January (12 months after initial diagnosis).

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