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Scleroderma & Raynaud's UK (SRUK)

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New Rheumatology Referral - hope it comes through quickly!

Purple_Badgers profile image
7 Replies

Hello folks, I’ve had fairly mild Reynaud’s for a long time and have more recently been diagnosed with fibromyalgia due to ongoing raised glands, pain & fatigue without infection/ inflammation. This was after seeing a rheumatologist who did a thorough examination, in-depth interview and blood/urine tests etc. to rule out arthritis and other inflammatory or autoimmune conditions.

Unfortunately, in the couple of years since that visit, I have developed more symptoms. Fortunately, my GP has referred me back to Rheumatology without hesitation.

My new symptoms include - tight palms, painful knuckles, permanently painful/tingly/numb fingertips, occasional electric shock feeling in my fingernails, dry mouth & eyes, itchy chin (no lie…), and most recently some visual disturbance. Oh and I’ve got indigestion/reflux back, despite the fact that I take an omeprazole every day to protect my stomach from my painkillers! Also indentations from gripping or opening stuff stay in my skin for ages afterwards. I find holding onto vibrating tools, such as hair clippers and now even my electric toothbrush, makes the circulation disappear from my fingers and is really quite painful 😣

This adds to my general joint pains, muscle pains and weakness, fatigue, cramps, body jerks, restless legs, tinnitus, headaches etc. Getting to sleep at night is becoming increasingly difficult and I often give up and go do something else instead for an hour or two. I can then usually drift off, but still have an uncomfortable sleep and never feel refreshed in the morning.

Anyway! Sorry to moan and thanks for reading. Let me know if any of it sounds similar to you ❤️

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Pixix profile image
Pixix

Yes, I do…I have fibromyalgia & Raynauds & 9 other medical issues…one is osteoarthritis in my hands, which gives some of the symptoms, but glad to see they have ruled it out in your case!! I also get pins & needles in some fingers as I have carpal tunnel syndrome. I’ve been waiting a year to see a rheumy & no date yet. Omeprazole worked well for me for some years, but them just didn’t work so my Dr changed it to Lansoprazole, which is working better!

Purple_Badgers profile image
Purple_Badgers in reply to Pixix

Hi Pixix, thanks for the reply! Waiting times are insane at the moment… hope you’ve got good support from elsewhere in the meantime.

It seems like once you’ve got one medical issue, you start to collect more & more 😕 (including lovely side effects from all the meds). Sounds like you’ve amassed quite a collection there!

I will have to ask about changing the omeprazole - such a shame, as it was working fine til recently. Mind you, I should probably try different painkillers as well, but anything too strong knocks me out and I can’t see the point in being comfortable but asleep all the time 😂

Have you got any sleep tips that I could try? xxx

Pixix profile image
Pixix in reply to Purple_Badgers

I’m lucky to have a good GP, but everybody wants to see him, & getting an appointment is very hard now. And yes, I’ve been trying something new to help sleep, & it’s non habit forming & it doesn’t make me drowsy in the mornings! Also, something in the evening to relax muscles…will get back to you, I need to look at the pill boxes. And, yes, I have polymyalgia , Fibromyalgia, Trochanteric bursitis, Hypermobility, Raynauds Syndrome, Osteo Arthritis, Sciatica, Essential Tremor, Haemangioma (spinal), Orthostatic hypotension, Dry Macular Degeneration & Plantar Fasciitis. Keeps me busy!! S xxx

Pixix profile image
Pixix in reply to Pixix

So, sleep! I take amitryptylline about 7pm, it relaxes the muscles f mean I drop off ff to sleep…sadly it doesn’t keep me asleep! The best sleeping tablet is Zopiclone I find, but that’s habit forming. I am always careful to take no more than one a fortnight. Also if you take them too often I think you get used to them, & then they don’t work so well. The new pill is, I believe actually used in hayfever treatment, but has given me a few decent nights sleep…it’s called Phenergan. But I’ve had some nights when it doesn’t work. I get a lot of pain & muscle cramps & tremors at night, so I’m not the best person to ask, really!! Sorry about that! S xx

Purple_Badgers profile image
Purple_Badgers in reply to Pixix

No worries, thank you for sharing your experiences! It’s all helpful ❤️

I’ve heard of Phenergan before… I’ll mention it to the doc next time I’m in there.

Pixix profile image
Pixix in reply to Purple_Badgers

Good luck!

andy7551 profile image
andy7551

Fibromyalgia diagnosis seems incredibly lazy, just because tests don't show a clear cut result doesn't mean its not auto immune or some other issue, the tests are not always sensitive enough to pick up on some activity, or may shown later on. Hope you can get somewhere with this quickly.

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