Raynaud’s disease : Hi everyone, sadly... - Fibromyalgia Acti...

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Raynaud’s disease

denden
denden

Hi everyone, sadly after years of suffering it’s official, I have full blown Raynaud’s! 😭😭😭😭😭

My dermy is so concerned.

My eyes are also in question. Hydroxy stopped. Mecaprin dosage increased. Raynaud meds introduced. Has anyone else had this experience? How did you find the effects of Mecaprin? Side effects potential or otherwise?

My skin this morning 😭😢

Still my GP is sitting on the fence thinking I have it all in my head’

18 Replies
oldestnewest

Do you see a consultant besides a dermi for this?

Hi NurseGladys123, how are you? Sadly the answer to your question is No. I have not been referred or seeing any specialist. Despite strong physical evidence, letters and concerns raised, all seem to be falling on the deaf ears of my GP practice.😢 Suffering in silence.

Really wish I knew of a hospital in SW London which actually has a GP practice knowledgeable of Lupus and connective tissues diseases. Be attached to District nurses that are fully trained/experienced in this field.

Does anyone know of a fully functioning hospital that specialises in Lupus, Raynaud’s & Hugh Syndrome care?

did you know we have a LUpus forum on here? just go to My Hub and in the drop down its there, you might find answers on there, good luck.

oscarbravo
oscarbravo
in reply to denden

Trouble is far too many Quacks are full of Sh!te Quick to argue against a Specialist someone who has studied that field not bumbled through Quack school.

But yet offer no more fore thought on the matter as most don't know as a Quack is someone that knows a little about lots and not a lot about a little! and a Specialist is someone that knows a lot about a little and a little about lots.

But there just purse strings sitting

Sorry what is the pic showing? It’s that how full blow Raynaulds looks like?

denden
denden
in reply to Karizma17

Hi Karizma, the picture is of my hands/body. Had to keep postage decent. Don’t know what stage this is. It’s shocking because it worsened in recent cold spells and now winter!

It was shocking to my dermy because the natural pigmentation of my skin is brown (mixed race) -

i have raynauds too. my fingers, hands, feet, toes & ears turn white & become incredibly painful if i go into cold temp from being warm. i wear two pairs of socks & gloves to help prevent the pain. my feet are even purple in summer! lol.

sorry, i havnt offered any advice as ive not been given any meds for it. i am on hydroxy though, have been daily for 15 years x

denden
denden
in reply to caninecrazy

Hi Caninecrazy, nice to meet you. 😃 You said you have been hydroxy for 15 years, have you experienced any problem with your eyesight?

caninecrazy
caninecrazy
in reply to denden

nice to meet you too denden , i have lupus so that's why i take hydroxy. my eyesight was okay for years but last 3 years i need glasses for reading but i think that's down to my age?! i'm 46. i do have dry eyes but i use lacralube eye gel drops at night which are great for me x

Hi fellow Reynaulds sufferer. I started with this years before i was diagnosed with fibro. I dont take anything for this as still havent got pain meds sorted. Also had vertigo few weeks back which has left me with occasional dizzy spells! All in all im ready for the knackers yard 😣😬🙄

denden
denden
in reply to Bettybright

Hi bettybright how are you feeling today? Sorry to hear you are experiencing dizzy spells coupled with any other issues ... this is awful and as you know quite debilitating.

I have been diagnosed with Meniere disease since 1994 so know how this feels.

Have you ever been referred to ENT specialist? It would perhaps help you to better understand some of why you get dizzy spells?

Mdaisy
MdaisyAdministrator

Hi Denden

Although, members here may have this condition I think it might be worth your posting in the HealthUnlocked community that supports people with this. Here's the link;

healthunlocked.com/sruk

Hope this helps :)

denden
denden
in reply to Mdaisy

Hello Mdaisy, I am a member of healthunlocked.co.uk

I am writing through/on their webpage. Oh no! Where is this please?

Mdaisy
MdaisyAdministrator
in reply to denden

Just need click the link I've provided and follow the Raynaud's community to ask their advice :)

denden
denden
in reply to Mdaisy

thank you. Elderly folks still learning technology. Apologies for any inconveniences caused. So embarrassing

Mdaisy
MdaisyAdministrator
in reply to denden

No problem you are a member of HealthUnlocked but there are many different communities that are run by different charities or groups - this community is specifically for Raynauds and will give you probably the best advice :)

denden
denden
in reply to Mdaisy

Thank you for highlighting this to me. One last question: can my post be deleted from your community? If so, can you delete it for me? Would be most appreciated.

Thank you 🤭

Mdaisy
MdaisyAdministrator
in reply to denden

You can delete it yourself if you want to .... here's a link that shows you how with a demonstration support.healthunlocked.com/...

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