I was wondering if we could share tips on how we survive a Sclero flare-up?
They are such a pain, literally.
Other than doing nothing and lying around, what do you find helps you physically, or mentally?
I discovered books on tape a few years ago. In the US we have special libraries for people who are Blind or Physically Handicapped. They give us a special "book player" and we can either have free cassettes mailed to us which we then ship back at no cost, or we can download hundreds of thousands of books from their online catalog to our computer and put onto a stick that is formatted so it only plays on their machine they sent us. A Dr. has to sign you up.
Listening to my books has really distracted me and gotten me through some rough painful times. They have all the best selling books and even magazines to listen to.
It really helps when your hands hurt too much to hold a book, and your fingers are too stiff and swollen to flip the pages.
I'd love to hear what others do for distraction or to ease pain.
Please don't tell me you own a tropical island and fly there to relax on the warm sand, I'll be too envious to stand it!!!! LOL
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Sophiebun11
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Hi Sophiebun11, replying late but as they say better late than never! At the moment I’m still waiting for a diagnosis and right now it feels like a never ending flare up of symptoms. I love to cuddle up on the sofa with my two miniature dachshunds either reading (I can prop my book up against them, they don’t mind at all) or sewing if my fingers are not too sore. This probably gives my age away, ha ha.I also like to watch dramas on the tv, especially period dramas, being transported into another world really helps me to forget about things.
As for the tropical island, I wish! But for my sins I am a
British football fan, won’t say who I support in case nobody speaks to me again, lol!
Best wishes and hope the flare ups don’t come too often for us all.
I'm in the U.S. so your football team fav is safe with me.
Those sound like good ways to deal with a flare. I have a kitty and he helps me a lot when I have flares of pain and exhaustion.
I'm sorry you're have a hard time getting diagnosed. Sometimes it takes years. Keep in mind that the Sclero Titres test positive in ONLY 30% of people who actually have Sclero. So negative tests don't mean you don't have it. A good rheumy will diagnose you based on the entirety of your symptoms over a few years.
Sometimes you'll get the Connective Tissue Disorder diagnosis which as my rheumy told me is a cop out name for a little Sclero, a little bit Lupus, a little bit this and that autoimmune disease. It's up to the Rheumy to figure it all out.
I was originally misdiagnosed with Lupus in my 20s, but then rediagnosed at the university medical center with Sclero. They are fairly similar in the beginning stages symptom wise. Now that I am having lung and kidney involvement it's obvious.
I hope you get a firm diagnosis. It's a shame there really is not much to do for it other than treat the symptoms and hope to stop progression.
I haven't even seen a Rheumy in 5 years since I moved there aren't many around and the wait list is over a year long. I was referred last May.
At least I was put back on Prednisone by my kidney Dr. so that is helping my Sclero.
Best of luck to you. Thanks for the reply. I guess this forum is a bit slow as we don't feel much like typing with our fingers on many days.
Hi Sophiebun11Thank you for your kind reply, afraid I did too much at the weekend so knocked myself out for the last two days, stupid me, should know better by now!
Goodness thought waiting lists were bad here not in the US, ours mainly due to COVID and trying not to overwhelm the NHS.
Hope you get an appointment with a Rheumy ASAP.
I’ve got an appointment on Friday with my GP as apparently there have been changes in my bloods
with my kidneys, so not sure what this will mean,
no point in worrying though.
Your right about the fingers as well, it’s starting to turn really cold here and wet! I have an adopted cat
called Phoebe, unfortunately the dogs tend to get on my lap before her, so she has her cuddles when they have gone to bed!
Do you mind me asking where in the US you are, I’m
from near Manchester in the North West of England,
so nice to hear from ‘over the pond’ as they say.
We are all hoping for a better Christmas this year with friends and family but this new Omnicron COVID variant is making things very uncertain, especially for those with health issues, despite being
vaccinated.
Hoping you and everyone on this forum has a peaceful
I don't think it's the pandemic where I am. It's just that there are not many Rheumy's here. I guess it's not the most popular field of medicine for Drs. to go into.
I got a referral to a Nephrologist for my kidneys and to a Cardiologist within a month's time. But there are a lot of those specialists around. I was only referred in Oct. this year.
There were more Rheumys where I used to live in the San Francisco Bay Area, but my Rheumy moved and then rents got so high that I moved to a rural area in the San Joaquin Valley of CA.
I found one Rheumy when I first moved here. His practice was Rheumatology and Immunology. But 99% of his practice was giving allergy shots. He wasn't even familiar with Sclero and asked why I'd had a Spiral CT. Well, duh. Because it's part of a routine workup to test for lung involvement with Sclero.
I told my PCP and he said he'd find me a new one, but so far I haven't gotten an appt.
I hope your kidney involvement isn't too bad. My eGFR went down to 28 so I saw a Nephrologist and he sent me to a Renal Dietician and put me on Prednisone to open the inflammation inside the kidney filters. After 3 months I went from Stage 4 kidney disease back up to Stage 3. I'd been in Stage 3 for the past 4 years but my PCP ignored it. Then I got a new PCP who was concerned and order a CT scan and sent me to the nephrologist.
No need to worry. It can be helped, but don't ignore it either. They say a plant-based diet is the best thing, but I've always been a vegetarian. Most people with kidney disease have it from high blood pressure or type 2 diabetes, but those of us without those but with autoimmune diseases can get kidney disease from the inflammation.
If you have anything going on in your kidneys, join the Kidney Group on this website, it's very busy. This forum is slower but I suppose we are more fatigued and having flares so we're busy with that.
Merry Christmas to you and your fur kids from me and my kitty Henry.
Hi, yes Rheumatology are very busy departments here in the North West of England, our cold, wetwinters don’t help !
Sorry to hear of all your problems, you seem to have a lot to cope with re the SS but sound so positive and cheerful, you are inspiring, thank you.
Think my kidney function changes are only mild at this point, hope so anyway, will find out tomorrow.
My blood pressure doesn’t appear to be generally
too high (occasional blips) but then I am on Amlodipine for existing heart problems, so I was
confused as to why this is happening. Interesting to hear that autoimmune inflammation can cause
kidney problems on its own even without high blood pressure. Yes will have a look at the Kidney
group forum. Thanks for this info. Hope that your kidney probs stabilise for you.
One thing about having fur baby kitties and dogs,
they are like little hot water bottles on your lap that never go cold, certainly helps with the Raynauds! 🐾🐶🐱 Take care, Nellie and Mabel say hi to Henry !!
Guess who called me today? The rheumatology office!! I was referred there by 4 specialists from as far back as May, and then monthly since. They said as soon as my PCP faxes over my recent lab work they'd set an appt. for me. I asked the receptionist how far ahead the Dr. is booked. She said he's booked through April right now. So it will probably be May when I get my appt. An entire year, amazing it took so long. So much for moving to a rural area. In the big city I'd only wait a month or two tops.
Have you noticed that your fur babies are way more affectionate in the winter when it's cold? I tell my kitty Henry that I think he is only using me to get warm when he sits on my lap and snuggles under the blankets at night. I think I should feel used and offended, but I love his extra attention. He was a feral and lived at a rescue for 10 years before I adopted him. He was fairly anti-social since he'd never had a person of his own before. So I am thrilled he is so lovey dovey now!!! He still doesn't like being picked up for more than one minute, but he loves to snuggle next to me even in the summer, and way more in the winter. In April it will be 5 years since I adopted him. He's come a long way in trusting me.
Keep me posted about your kidney numbers if you don't mind. I'd be interested to see how your Dr. treats it if it's related to autoimmune disease. I'm on Prednisone for it and my nephrologist is considering starting me on CellCept but didn't want to do so without conferring with a Rheumy about it. So maybe that will happen in May LOL!!
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Brrrgh winter us almost upon us
Swollen hands - worsening Raynauds or something else?
SIBO and seeing a Functional Medicine Practitioner 
Getting a diagnosis?
Just something i made up in my head and thought i would share it with you guys. 'If only poeple understood'
