Swelling in the heat - any tips?

[Mifford]

So being extremely photosensitive and very heat reactive this weather is not proving to be fun for me this week. I got up this morning and had a nice cool shower and shortly after my cleaner arrived. She sat down for a minute and asked if I'd realised how swollen my feet and ankles are and then was quite worried that my left calf looked incredibly swollen.

Feet and ankles are a given in this heat but the calf is a new one on me so not sure if that's just the heat or I may be flaring at the moment. I had my monthly methotrexate bloods done Wednesday but had to walk about 20 metres to the surgery from the car in the sun and was struggling badly by the time I got there. Then discovered that my asthma inhaler was a year out of date - no wonder it wasn't working when I was feeling out of breath! My blood came out a lot quicker than normal and I didn't stop bleeding instantly like normal so the nurse thinks my blood pressure is up and I have been running a low grad temperature for a few days with no idea why.

Anyway, all my tests came back ok but raised compared to normal - they are usually well within range except my crp (think it's that one) which sits around 7 and "acceptable". This time everything except my white bloods were at "acceptable" and crp was up to 9.

I'm guessing I'm flaring and this explains the swollen calf but I'm guessing in this heat I may not be alone and wondered if anyone has any hints or tips that help?

I was also told I need to avoid stress ... as if I go looking for it! At the moment it's just impossible. Other half was confirmed with a cancer diagnosis last month - non invasive bladder and thankfully all removed but was fast growing at stage 2 so having 6 sessions of chemo weekly at the moment. And same week we got his results my dad told me he'd been diagnosed with pulmonary fibrosis which is terminal. He tested positive for his ANA as well so that's going to be looked into further as it could be that he also has lupus and had no idea. And just as we all settled with that my brother is in and out of hospital at the moment as he's not been able to absorb food for about a month, is severely anaemic and may be about to get diagnosed with crohn's diseaese. I'm only surprised my blood pressure didn't shoot the needle back out again! Lol

[EOLHPC]

Am very sorry: you've got an awful lot on your plate, mifford 😧....am v much feeling for you...and am v glad your cleaner is paying close attention to your condition & speaking up when she notices things like this swelling 👍👍👍👍

My experience & medical knowledge aren't great enough to be able to make any comments or suggestions other than: please tell your gp about this swelling as soon as poss....my feeling is that the combo of all the flaring signs & symptoms you're having alongside this swelling need to be considered by a medic, yes?

Am wishing you & your brother every best wish

Take care dear mifford

🍀😘🍀😘🍀😘 coco

[Mifford in reply to EOLHPC]

Thanks BC .. it's proving to be quite a year! I have rheumatology on Wednesday so I'll make sure I bring it up then. I hadn't even noticed my calf to be honest as it's not even remotely uncomfortable so I may have done it loads before and just not realised.

My ankles and feet are definitely heat related as I've done it for years in the summer. My ankles get quite uncomfortable so when they get to this point I tend to stick my feet up in front of a fan and cool off that way but it's not the most effective so not sure if others have better remedies. I also suspect I don't drink enough in this heat either which probably doesn't help.

I will be spending this afternoon feet up, lots of drinks and ice creams - there's a bit of a breeze coming through this afternoon which is helping too 👍🏻

[EOLHPC in reply to Mifford]

👍👍👍👍🍨 🙋🏼

[Shaysuekirk]

That's so much to be going through at once! Not surprising that you'd be in a flare. One of my very good friend's lost her mother this year to PF. Is your Dad on the transplant list? Her mom was so very close to getting her transplant. Prayers for you as you to through all of this.

I get swollen pretty quickly in the heat. And, I'm in TEXAS. So, the summer months are never fun. I hide a lot indoors... Waiting for September now.

[Mifford in reply to Shaysuekirk]

Unfortunately transplants over here for IPF are very rare and usually for younger patients and my dad is 72 so unlikely to qualify. He is being recommended by his consultant for a new but very expensive drug as he fits the criteria but it'll depend on his lung capacity not deteriorating more than 2% by the time he gets reviewed. This will only slow it and can't stop it though. Once he starts treatment at the hospital they'll be able to review his results and see how fast it is advancing to give him a better idea of the outlook. He's been told his worst scenario is 2 years but he'd be unlucky and best is 5 but that's probably unlikely. I think the bigger question will be how quickly he starts to get noticeably ill.

In the meantime we've booked a big house for us all to spend Christmas together this year with both my brothers and all my nephews and niece as the eldest goes off to university in September as well so that gives us all something positive to look forward to. If we can we are going to try and fit our wedding in between Christmas and new year to make it even more special 😊

[Shaysuekirk in reply to Mifford]

That sounds perfect!!