Raynaurds ?

[Tay171]

My Doctor keeps telling me raynaurds is common and I have nothing to worry about . But my hands are always red. Never blue or white ? They go red and blotchy and warm temperature affect them as well. And when I exercise my entire arm turns red ? Is this a disease or more circulation . Been referred to rheumatologist but something else is going on.....

[EOLHPC]

Yes, some cases can be complicated & unusual. Immune dysfunctions & connective tissue disorders are different in every individual: different overlapping primary conditions, different secondary conditions add up to create distinctive patterns of symptomatology. In my opinion your dr is possibly patronising you because he thinks you need reassurance rather than information. I'm the kind of patient for whom knowledge is power & reassuance. I've been patronised by loads of medics mistaking my thirst for understanding as simple anxiety. Rather, I was feeling anxious because the Drs' explanations were nonsensical.

This SRUK forum is wonderfully reassuring. I'm so glad you're here. Hang in there...you will get the hang of living with this...things will get better & easier to manage. Experience & the good company here can help. My issues started in childhood. Am now 63 and have had a wonderful career & marriage, have travelled and made the most of life despite very early onset illness. You can do so too

My version of raynauds (RP) does indeed include a troublesome degree of purpling & whitening, but not as bad as most cases I've seen...with me, possibly the most severe issue is a reddening & blotchiness swelling. I've been diagnosed with childhood onset raynauds & simultaneous more recent onset erythromelalgia (EM). The latest SRUK mag has a great article on EM, and good info on their website, here is the link:

sruk.co.uk/scleroderma/eryt...

EM is more rare than raynauds. My primaries are infant onset lupus + vascular ehlers danlos + a Primary Immunodeficiency. I manage my version of simultaneous RP & EM with lifrstyle stuff 24/7 + the help of my lupus combined therapy treatment plan which somewhat damps down the cyclical 24/7 year round symptomatology

I hope something in there helps...my instinct is that a rheumatologist or vascular consultant with expertise in immune dysfunction patients may need to look more closely at the symptoms you're describing (I doubt any GP could have the expertise to really understand your case)

Hope you get some great replies

🍀🍀🍀🍀 coco

[Neonking in reply to EOLHPC]

My raunyds aftect me any time there is a temperature change. Like going in or out of the house or opening and closing the fridge. It can cause ulcers and sores and can affect hands feet and nose but also lower arms and legs bellow the knee. It is a desease that can get worse if you dont keep an eye on it. It can go into complete remission for months/years.

Symtems are akin to frostbite and digits and toes have to be amputated. But those cases are few and far between .

Keep gloves with you AND WeaR them!

Hand warmers are important in your arsenal agaisnt this illness.

I find the reusalable ones from Tresspass are ideal. Good socks.

I said good socks not 6 for pound junk! Even if your raynauds don't affect your feet.

Hope this helps

[Neonking in reply to EOLHPC]

EOLHPC

Wow I have no idea what any of that means.to many Abbv?

What is SR magazine?

And I get the feeling you must be in the USA.

My Rhomaloggy's description was simply "you have raunauds." "Me "how and what" ' yeah thanks next please'

Wow did even know SRUK was a thing.

And now I believe you must be in the u.k ad it's my rumatologist that sucks

[EOLHPC in reply to Neonking]

Yes am living here in the uk. SRUK is the organisation running this form here: Scleroderma & Raynauds UK. You can see this name at the top of this page on your computer screen now.

Sorry about your rheumatologist

[Neonking in reply to EOLHPC]

I thought sruk was just a bunch of likeminded running a web site. Like my tropical fish forum haha.

But now I see it a big big thing working on behalf of sufferers

And yeah I'm kinda Sorry for him (rhumy) too!

But my GP is first rate

[EOLHPC in reply to Neonking]

👍👍👍👍😆🍀

[Tay171 in reply to EOLHPC]

Any of these effect your vision ?:/

[EOLHPC in reply to Tay171]

My vision is another matter. I have Sjogrens dry eye conditions diagnosed and in treatment by a NHS eye clinic opthalmologist cornea specialist (on the usual prescrip daytime drops & nighttime gel & meibomian gand treatment + ciclosporin ikervis immunosuppressant drops). As one of my lupus clinic rheumatologists says: the ecology of the eye is very individual in immune dysfunction & connective tissue disorder patients 😏

[Tay171 in reply to EOLHPC]

I'm starting to feel like there is something more wrong with me . However I also have bad health anxiety so i don't know anymore until I see a specialist NHS waiting list is very long . Also waiting to see cardiologist

[EOLHPC in reply to Tay171]

It's good you know that you're prone to health anxiety....because this means you can comfort the part of you that's anxious...I've been comforting my anxious self for many years with quite a lot of success. And, for sure, sharing on these healthunlocked forums is also a good way to cope with anxiety. Courage, take care 🍀

[claralove]

Hiya that sounds similar to me..I was diagnosed with raynaulds.. because my most of my symptoms fitted..but some not quite.. I think its my veins or something too..something isn't quite right.. but not enough of an issue to cause doctors to look into it...to be fair I have a host of health problems so it may be one of those instead causing it instead... x

[titanicus]

Hello Ct17. Has Your Doctor prescribed Nifedipine or something similar? Raynaud's is a disease and is caused by circulatory issues. Nifedipine acts to improve circulation. Hope this helps. Take Care.

[Cctexan3]

I live in Texas. It's hot from April til mid November and I wear gloves and socks and long sleeves. And I sweat! But it's better than the pain of raynauds or the sun blisters of my lupus

I'm on my 4th Rheumy. Insurance companies keep dropping doctors. Cuz of the Obamacare thing.

You're very lucky to have a good dr! I didn't know there was any treatment for raynauds. I'll ask after thanksgiving

Do y'all know if planqunil helps with that? I had to go off of it due to my retina swelling ( vein)

[Goldyukr in reply to Cctexan3]

It didn't help me. However, I also have erythremalalgia. It made that flare up real bad when I took it. However, I have heard some say that it help them. It seems to be case by case. It's worth a try. I'm in Florida and so thankful for Obamacare or else we wouldn't have insurance. I don't know what I'd do. Here the problem is that many are going 'concierge' medicine which means they take no insurance at all. Crazy.