Hello everyone!! I have 2 questions related to systemic sclerosis and Raynaud's.
1. Does anyone with systemic sclerosis and Raynaud's phenomenon have a non-healing ulcer and chronic osteomyelitis in their feet?
2. Is there anyone with Raynud's phenomenon and systemic sclerosis who has cold hands and feet, sweating throughout the body, and a temperature that fluctuates between 32 and 34 degrees Celsius? If that's the case, what are you up to and what have you done?
Sorry not much help but I have severe Raynaud's phenomenon tried iloprost infusion no improvement.
I don't have the ulcers and I'm not sure what osteomyelitis is, but I get the cold hands and feet and fluctuating temperatures. Have always tended to get hot and sweaty when doing exercise (from relatively gentle walking to hill climbing or cycling) then AS SOON as I stop moving my temperature plummets dramatically, kicking off a Raynaud's attack and sometimes what feels like hypothermia I shiver so much and get so weary. Now, menopause is exacerbating those hot to cold extreme swings, and not just when moving.
I've tended to wear layers (5-6 layers even), mostly only of natural fabrics and mostly only merino wool which is very good for insulating and cooling. Expensive but lasts me ages. But most importantly, I always have to carry spare clothing with me and have somewhere I can IMMEDIATELY strip off every layer of clothes on my top and replace them with dry layers. And then apply some sort of external heat till I rebalance. On the rare sunny day, sun will do it (!) but otherwise, a heater, roaring fire in a pub, or battery-heated tops from Thermosoles/ designed4insiration who I also get battery heated gloves and insoles from (they now do a heated sock too). And I always carry spare batteries.
So, if I'm planning to go for a walk with friends, for example, I have to pin them down to knowing how many times we might stop for a rest, and where, and if we'll also stop for a cuppa at the end - because I need fresh base layers each time. Not many of them understand, sadly.
As I can't afford to keep the whole house heated to a temperature that stops my hands and feet going off, I also uses the insoles and heated gloves when sitting doing work, or making food etc. or just going to the loo!
Hi there Lo2345I have systemic sclerosis, raynaud's and sjogren's. Yes I have very cold hands and have been known to wear gloves in August. I'm so cold I have to avoid the big fridges in the supermarket as by the time I get to the checkout my hands are so cold I can't fiddle with my purse and money to pay. Occasionally I have a sudden very a hot sweat especially in bed and I wake up with wringing wet pyjamas - horrible. I don't think it's menopause related as I'm almost 81 and passed all that stuff. (oh dear, should that be passed or past?) I've never mentioned it to the medical people so I'm unsure what is going on. I just tell myself that my thermostat has bust! Sorry I can't help with the other condition you mention. Hope someone can up with the answers for you. Best wishes.
systemic sclerosis
Newly diagnosed systemic sclerosis
