Rheumatology this Morning

[Lupiknits]

I made a good start by waking up at 9.20 for a 9.30 appt. After trying to call them over and over, but getting no answers, and having the usual paranoia about ending up at the back of a long waiting list, I grabbed an Uber and turned up an hour late.

I was let in because they needed my little ol’ stats for the research. The usual 5 blood samples x2, weight, BP and pulse routine. Then I saw the researcher who asked about my dry eyes ( the dry mouth/early Sjögren’s has been confirmed by the Dental Hospital) and decided I should have a Schirmer test before I went. The test was undertaken by a lovely nurse who encouraged me through the five painful minutes. Taking the strips out was like pulling plasters off the inside of my eyelids while someone clubbed the top of my head. She lined the strips up to check how dry my eyes are and muttered “I’d call that an effing zero”. Pro tem I’ve been prescribed some drops, but will be referred to the eye hospital.

I was asked what my GP had done about my anaemia and folic acid deficiency. Nowt. I’m taking supplements myself.

A kidney scan is being ordered for a reason I missed because this was all rather a rush.

I think that’s it. I was going to ask about my digestive problems (half the night having runs is why I slept in) but she headed off in other directions, so I’ll try to see a GP instead.

Trying to stay awake so I get to sleep at a normal time, but it’s unlikely to happen.

[honeybug]

🤗💗😘🙏

[GloomyEeyore]

I’m sorry you are having such a bad time of it Lupiknits. Glad that you were still seen though despite being late. I had a schirmer test done at my first rheumy appointment. Nurse that did it said it was bone dry and she had never seen that before. I was referred to the dental hospital too and they confirmed that my mouth is also very dry. She suspected secondary Sjögren’s but I don’t have a diagnosis as I declined the lip biopsy. Talking through it she recommended leaving it for now as she didn’t want a secondary Sjögren’s diagnosis to prevent my rheumy looking at everything else.

Sorry that you are still having such gastric problems. Have you tried taking acidophilus? It is good bacteria which helps balance out the flora in the gut. I take this and it has really helped me with the digestive problems I used to get. They were not nearly as bad as yours but dosage can be higher than what I take. Unfortunately they aren’t available on prescription. I buy mine from Amazon. Xx

[Lupiknits in reply to GloomyEeyore]

Thanks GE. I was really taken aback at how uncomfortable the Schirmer was.

A major part of my diet is plain natural yoghurt and plain kefir. After the colonoscopy I got some of those pro biotic capsules as I decided everything must have been flushed out!

I’m really not sure what’s going on with the runs because it’s similar to the urge incontinence. It just comes out and I’m unable to control it. My rear end gets very raw and painful. The NHS prescription for super duper Tena Ladies has been a blessing in more than one way 😉

I see the incontinence nurse at the end of the month, and there are a number of devices to help me strengthen the muscles. I’m making a guess that bladder and bowel can be helped that way. Let’s hope so, because it’s taking a lot of effort to leave the house sometimes.

I’m keeping a diary to see if I can spot any food triggers. So far, nuts are a definite culprit. If dairy turns out to be another, I’m really in trouble because the range of food I can eat seems so limited. x

[GloomyEeyore in reply to Lupiknits]

I was told I have coeliac around 10 years ago. Never diagnosed officially as I didn’t get a colonoscopy. The GP I saw back then took blood and told me to stop eating gluten. Symptoms vanished after a few days. What I wasn’t told though was to have a colonoscopy you had to be on a gluten containing diet until after it was done. Couldn’t deal with eating gluten again so was only diagnosed based on illumination diet. Means I don’t get gluten free food on prescription but I can live with that.

My Dad couldn’t eat, (or drink), anything with sorbitol or potassium sorbate. These artificial sweeteners upset his stomach. Well known for doing this and are creeping up in more and more products.

Hopefully the nurse will help you and you can find out what it is causing your problem. Xx

[Krazykat26]

Ouch ouch n a bit more ouch!!! It's a gentle cyber hug from me 🤗xx