Hey! Everywhere talks about raynauds in cold weather but not hot weather..
For a year, I thought I had an autoimmune problems, one hand swells up with extreme heat and the same for my feet and lip, pains, fatigue etc. I recently was told nothing autoimmune was found in blood work or X-ray. If it's just raynauds, why are my hands/feet on fire, sharp stabbing pains etc day and night in summer? Can you have reactions to both winter and summer?
Sounds very much like SSc symptoms to me. In the winter my Raynauds is agony, but no relief in the summer as then the SSc kicks in with the swollen fingers, hands, arms, face, legs, feet. Basically everywhere, even my stomach is swollen with the skin stretched and tight.
I've had comments that my skin doesn't look my age, as there's not many wrinkles. But it's because the SSc makes everything so very, very swollen.
Just because the markers aren't in your blood doesn't mean you've not got SSc, not all of the markers are in my blood but there's no doubt I've got it.
The diagnosis isn't and shouldn't be made on the blood results alone. There's many symptoms that when put together can point to SSc but not everyone has every symptom, or they could develop further down the line!
I suggest you go for a second opinion, and make a list of all the symptoms you're suffering from.
Good luck,
Charlie.
Thank you so much for replying back! This has been the Bain of my life for 1 and a half years ☹️. I just don't feel satisfied with the results and feel like I'm losing the plot. Even when you mentioned your stomach aswell, I was told I have ibs but I think it something else. I will take your advise and go for a second opinion. Thank you again!!
Shauniz you really do need to push for that second opinion. It's tough when medical professionals don't listen. There's loads of ppl on here that'll tell you really relevant stuff and I'm sure there'll be someone else along shortly.
Rightly or wrongly because of NHS waiting times I recently paid my pain doctor by going privately to see him, instead of waiting the 18 months on NHS. It's more than possible to see a rheumatologist privately, if you can possibly do that I'd definitely advocate it as you'll jump the queue and can pick your specialist.
Your symptoms sound just like mine, and I'm diagnosed as non limited SSc. Limited SSc is very similar but doesn't affect as much of the body (that's how I interpreted it, I'm sure there's a better way lol) anyway yeah, yours sounds like mine. I'd wager you have SSc.
By the way it effects mid thirty yr old females with Raynauds much more than any other group. Do you happen to fit into that bracket?
What medication are you taking for your Raynauds? Some of them cause intense muscle cramps and very swollen painful joints. As well as getting a second opinion it could be worth changing your Raynauds medication.
That bracket is just a most susceptible type thing I think.
I really do hope u manage to get a second (and even a third if necessary) opinion though add your symptoms sound very, very similar to some of mine. It's awful when you're trying to tell a medical professional what you're experiencing and they fail to understand our diagnose.
What have they attributed all those symptoms to if they're negating SSc?
My Raynauds was diagnosed, because I was having white fingers and lots of pain in summer, obviously worse in winter but still problems in summer always have to have a pair of of gloves in my pocket.
I was diagnosed with Raynaud's 5 or 6 years ago and prescribed nifedipine, unfortunately it made me ill so was advised to stop taking it and my GP says she can't prescribe anything else, just cope with it. I had a blood test and the ANA was not positive so both GP and consultant told me the problems I have could not be linked to Raynauds or any auto imune condition, stop getting stressed and cope
I couldn't take the meds prescribed so now take herbal supplements. But I also have problems with my feet and fingers during the summer, more so in winter, to the point I can no longer wear rings as the variation during the day has meant I've lost 3, one being my wedding ring. I hope you get sorted. I do carry gloves and socks with me everywhere and spare coats in the car. I have used all over this summer too.
I couldn't take the meds prescribed so now take herbal supplements. But I also have problems with my feet and fingers during the summer, more so in winter, to the point I can no longer wear rings as the variation during the day has meant I've lost 3, one being my wedding ring. I hope you get sorted. I do carry gloves and socks with me everywhere and spare coats in the car. I have used all over this summer too.
Try eliminating dairy and gluten. Allergies to these can inhibit thyroid function, leading to a colder body temperature.
Thank you all your comments. I find in summer it's the opposite effect of raynauds. My hands are on fire and swollen, mainly one hand. It's so strange, thinking I have intolerance to both heat and cold. I'm seeing my doctor again on Monday so I will update so that anyone experiencing the same thing, can get possible answers x
Could it possibly be something like erythromelalgia?
nhs.uk/conditions/erythrome...
I have Raynauds but I also suffer with burning itching red hands and feet if I get too hot - I haven't bothered pursuing a diagnosis as yet - I have more trouble with the Raynauds than this
I have just posted about my daughter with this same issue. She does have Primary Raynaud's but suffers complete opposite reactions in the Summer that are not preceded by sudden temperature change/cold cycle. She becomes extremely hot and cannot cool down - it makes her sick, faint and has swollen hands/red face etc.
Raynaud's
Ssc and secondary raynauds 
Raynaud's Please Help 
Erythromelalgia &RAYNAUDS 
Raynaud's All Year Round!!
