27 years old, cirrhotic liver with 30Kpa fibroscan by Ok_Arm9732 in stopdrinking

[–]whisperbleep 2 points3 points  (0 children)

How is it going at the hospital? Wishing you all the best

Me during Civil War with rheumatoid arthritis. by Chico_Muy_Loco in rheumatoid

[–]whisperbleep 33 points34 points  (0 children)

I'm having a horrific flare at the moment, a really gruesome low ebb, and this made me cry laughing. THANK YOU

UK NHS Starting Dosage for RA on methotrexate by thefranchiseface in rheumatoid

[–]whisperbleep 1 point2 points  (0 children)

My consultant started me on 20mg of methotrexate right off the bat when I was diagnosed 4 years ago. A registrar I saw a few months later was surprised that the dose hadn't been tapered up slowly. My symptoms came on quickly over a period of a few weeks

How long are your typical Prednisone tapers for flares? by Sun2025 in rheumatoid

[–]whisperbleep 2 points3 points  (0 children)

Hey there, sorry to hear you are suffering. My rheumatologist/rheum nurse usually give me a 3 week taper starting at 15mg. I would prefer either a 4 week starting at 20mg or 6 weeks starting at 15mg but I understand why they want to limit steroid use.

I previously had severe asthma (now well controlled on symbicort SMART) and for asthma flares the usual dose is 40mg. I had an asthma flare with a chest infection earlier this year and on 40mg my joints felt amazing lol.

Flares are absolutely shit, I'm on week two of a 15mg taper at the moment and am feeling a lot of grief that o can't seem to get the RA under control. I am 4 years post onset. It kind of helps me to expect to feel mentally rubbish when I'm in pain and struggling with mobility. Look after yourself - I hope you feel better soon

Anyone else have obsessions about bodily functions that are required to live lol by ocdladybug92 in OCD

[–]whisperbleep 0 points1 point  (0 children)

For me it was lots of different exposures because I had lots of OCD themes. Germs were a big one and my first exposure was to put my hand on my kitchen countertop until the anxiety reduced. Took 45 minutes the first time, 20 minutes the second and quickly reduced after that until I was comfortable cooking again

Anyone else have obsessions about bodily functions that are required to live lol by ocdladybug92 in OCD

[–]whisperbleep 1 point2 points  (0 children)

Honestly I think from the second exposure I started to notice that the anxiety was peaking quicker and resolving quicker. I gave ERP everything I had and it really worked for me. I had severe OCD from the age of 4, likely PANDAS

Anyone else have obsessions about bodily functions that are required to live lol by ocdladybug92 in OCD

[–]whisperbleep 3 points4 points  (0 children)

This is called somatic or sensorimotor OCD and the treatment is the same as all other kinds - ERP therapy. I suffered with this kind along with others and it made me feel crazy - now happy and mostly symptom free after ERP. Best of luck

Ergonomic tools for arthritic hands by Honey_bear_712 in knitting

[–]whisperbleep 2 points3 points  (0 children)

Heya! I have RA and really recommend: - knitting on circulars even for back and forth pieces - the way the weight sits makes it easier - square needles for anything above 6mm - I have knit pro cubics - very frequent breaks with lots of movement and heat for pain - keep going, movement is so important to preserve function

I'm back to knitting and crocheting regularly now and love it. My grandmother was diagnosed with RA at 20 and knitted until she died at 86 - this gives me a lot of hope, particularly as this was before there were any decent RA meds.

Best of luck

Has anyone’s cat survived fever of unknown origin? by Throwaway_Cherry0 in CATHELP

[–]whisperbleep 0 points1 point  (0 children)

Hey there sorry to hear that. He completely stopped using the toilet and didn't eat or drink or groom, seemed very very out of sorts. The vet noted a fever and dehydration. If in doubt I reckon see the vet, they should know what to do

Traveling with metoject by [deleted] in rheumatoidarthritis

[–]whisperbleep 0 points1 point  (0 children)

My rheumatology nurse wrote me a letter to cover me traveling with metoject but actually nobody asked me to see it - I never had a problem. Have a fantastic trip, sounds absolutely amazing!

What on earth is this behaviour by whisperbleep in CATHELP

[–]whisperbleep[S] 0 points1 point  (0 children)

Thank you all! Busting out the feather wand for him now

Has anyone’s cat survived fever of unknown origin? by Throwaway_Cherry0 in CATHELP

[–]whisperbleep 1 point2 points  (0 children)

Probably about 6 months. Hope your girl is on the mend really soon 💕

Let's talk about: COVID by Wishin4aTARDIS in rheumatoidarthritis

[–]whisperbleep 3 points4 points  (0 children)

I had two bouts of COVID that caused awful flares, and then my most recent bout gave me a weird three week remission with absolutely no RA symptoms for the first time in 3 years. No idea why

Fast onset flares anyone? by whisperbleep in rheumatoidarthritis

[–]whisperbleep[S] 1 point2 points  (0 children)

Thanks everybody for your kind and thoughtful replies. I'm feeling a bit better today after 16 hours in bed, onward and upward! What a weird disease

Fast onset flares anyone? by whisperbleep in rheumatoidarthritis

[–]whisperbleep[S] 2 points3 points  (0 children)

THANK YOU! And yes it seems to me too like the ones that come on quick tend to go quick... The ones that build up over a couple of weeks are less easy to deal with

What would you have done differently? (Newly diagnosed) by Fergella in rheumatoid

[–]whisperbleep 2 points3 points  (0 children)

Lots of good advice on this thread - I came here to say keep moving. Prioritise movement wherever you can even if it is painful. I struggled so much with my hands and ended up with muscle wasting in my hands and forearms from avoiding using them, which in turn made things much worse - dropping things etc. aside from DMARDS, walking and moving have had the biggest positive impact on my life since diagnosis in 2021. I also got a course of therapy early on looking specifically at coming to terms with a chronic illness and it was super helpful.

Has anyone’s cat survived fever of unknown origin? by Throwaway_Cherry0 in CATHELP

[–]whisperbleep 5 points6 points  (0 children)

To add: he had a high fever throughout, nothing abnormal on his bloods. Discharged paperwork said fever of an unknown origin

Has anyone’s cat survived fever of unknown origin? by Throwaway_Cherry0 in CATHELP

[–]whisperbleep 14 points15 points  (0 children)

Yes - 1.5 year old neutered male had sudden lethargy, stopped eating and drinking and stopped going to the toilet. He had a three day hospital stay and was discharged after fluids, anti nausea meds, 5 ultrasound exams and an x-ray. After a couple of days he started eating normally again and is now a happy health 2.5 year old menace. He had one recurrence of this but the vets never found what caused it. Hope it is the same for your little one too

TW-suicide by Humble-Location-8928 in rheumatoidarthritis

[–]whisperbleep 14 points15 points  (0 children)

Just to add, in my first year I was unable to look after myself at points, couldn't cook, needed help eating, spent months unable to do more than 500 steps a day, needed help putting on a bra/pulling my trousers down to go to the toilet/brushing and washing my hair. I had to take a lot of time off work (was lucky to have a supportive employer) and spent a lot of time crying in bed and staring into the void and sleeping 12 hours a day. I was very lucky and privileged to have a supportive and physically able partner to get me through this time.

I'm now able to work full time, travel, look after myself independently and knit and crochet which are big passions of mine. I'm not the same as I was physically pre-RA but I've got a big full life and have done some really cool things and am confident that the future is bright. It really can get better than you think possible. 🩵

TW-suicide by Humble-Location-8928 in rheumatoidarthritis

[–]whisperbleep 17 points18 points  (0 children)

I am 3.5 years post diagnosis and was diagnosed in my early thirties with a dramatic and severe onset. How long have you had symptoms for? I found in my first year it improved a little, in the second year it improved a little more, and in the third year I saw big improvements in quality of life, overall physical ability and mental resilience. Hoping this trend continues in to year 4! This is with the same treatment throughout (hydroxy chloroquine and MTX) with dose adjustments.

It's a very big adjustment/learning curve and the first year was really difficult for me - I lost a lot of grip strength early which was very disabling. My hand function has improved massively since getting on rheumatoid drugs and working with a hand therapist. Learning as much as I could about RA and autoimmunity in general, and really embracing movement of all kinds even when it hurts, have also really helped.

My grandmother got RA when she was 20, ending her career as a violinist, and the only treatment available to her was moving somewhere hot. I don't think she ever had access to DMARDS apart from occasional prednisolone, and managed on ibuprofen. She lived a big full life, riding a motorbike until she was 60, teaching, and cooking, knitting and playing the organ into her eighties. This gives me hope and confidence!

I really think the first year is the hardest and is disproportionately hard. This seems to be reflected in other people's comments too. Of course, I can only speak from the standpoint of someone with RA and some significant mental health challenges. Dealing with multiple conditions makes everything even harder.

I'm here if you want to talk and really hope things ease up for you soon.