Raynauds Syndrome (SLE) related ? - Scleroderma & Ray...

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Raynauds Syndrome (SLE) related ?

Discontent profile image
16 Replies

I have been tearfully suffering everyday now for over a year on my left middle finger, now inflamed is not completely healed, now my right middle finger is also inflamed, stinging, and my tears do not stop. I have tried countless creams, bridges to prevent constant bumping both, now am on high dose of pain medication that just doe not soothe me. Gloves do not work, as COLD and HEAT hurt. I feel desperate to find a healing method to work, so I can function. Any suggestions that are true blue?

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16 Replies
Discontent profile image
Discontent

I read Ana Marthas' reply , I teared immediately. This is so shocking to me, yet so real as I have been diagnosed since my twentys. Never felt this much pain in my finger joints even during a bout with R.A. in 1982, with nephritis of the kidneys. I have never been able to carry body weight over 125 lbs without kidney pain. But my fingers - the pain sends me to the moon. I do sympathize heartily, and sincerely.

Discontent profile image
Discontent in reply to Discontent

Thank-you for being here HealthUnlocked.

Connie75 profile image
Connie75

Hi there, I suffer with raynauds, fingers, toes, ears, nose. I'm generally cold & have flare ups all year round. It sounds like you may have chilblains too. Try Balmosa Cream, you can buy over the counter. I use it for my fingers & toes. I can also suggest keeping as active as possible. I know sometimes we just want to hide indoors wrapped up. Highly suggest yoga and mindfulness as a coping mechanism.

Discontent profile image
Discontent in reply to Connie75

Thank you for your suggestion. I will try the Balmosa cream and see if that will help. Smiley face with tears. Discontent

ilovedancing profile image
ilovedancing

Since I have been taking nefedipine my the symptoms in my fingers have been much better. I still have problems in my toes but not as severe as they were. I had no side effects if I keep the dose to 40mg per day, slow release tablets. If I increase the dose to help my feet it makes me dizzy and my blood pressure is too low. If you are not already taking this medictin I would certainly give it a try.

Discontent profile image
Discontent in reply to ilovedancing

Hi. I am taking 30 mgs of the Nifedipine as well as 40 mgs of Lisinipril and 7 mgs of predinsoe . Thank you. God bless.

GillB46 profile image
GillB46

You don't say if you have an ulcer on the finger so could you have gout?

I have had excruciating pain in my left ring finger a couple of times. Just a slight knock would send me demented! Tried everything then saw my GP who did a blood test which proved gout. The medication can be unpleasant as it can affect your stomach but it was worth it to get rid of the pain.

I always thought gout was a big toe thing with port drinkers, like in cartoons, but it can attack any joint in the body.

Hope you find some relief,

Gill

Discontent profile image
Discontent in reply to GillB46

Hi. Thank you for your response Mark. I do not have gouty. I was diagnosed as having Raynauds Syndrome but I don't have any ulcers on my fingers. The skin under the nails on each finger split open, causing redness, swelling, and much, much pain everyday, all day, and now have been given nitro-bid cream to help the blood flow to my middle fingers.. The left finger is stiff, hard to bend with great pain. Thank-you.

MFC911 profile image
MFC911

Hi,

I suffer also. Having tried many different pills & potions I have discovered one thing

that helps to aleviate the pain. "GTN" patches. Have a word with your GP and I am sure she/he will help you. Stick one of the patches on the back of your hand or your forarm.

The patches are vasodilators and increase the blood supply to your extremities. I have found that it sin't nessecary to use them all the time, a few times a month does the trick. It isn't a mirical cure but it makes things bearable.

I hope this helps you. Try and keep smiling.

Regards. Mark.

Discontent profile image
Discontent in reply to MFC911

I thought it was the vascilitis, and have never heard of this GTN patch. I won't hurt to try. Anything to have a life back using my hands. Cold/hot air, water, hurt me to the core of my being. Almost like I am having a Nervous Breakdown. At least mentally. I have a specialist in Rheumatolgy, but the doctor who found the SLE 1982 has since retired. My loss. Thank-you

Howlinoldowl profile image
Howlinoldowl

I had ulcers on both thumbs and two fingers that all began at the top of the nail bed. I kept my hands warm at any cost, even though it meant restricting outdoor enjoyment to almost nil, first of all. As far as treatment, I used Polysporin through the day - lots of it. Covered that with just the tips of finger cots sized for larger hands than mine so there was no blood floor restriction and still a little air circulation. For prevention, I use lanolin. Seems to be the only thing that works. When my nailbeds feel sensitive, I fill beneath the nail with lanolin at bedtime, and by morning I'm back to normal.

I may have just been lucky, but it's what worked for me. No ulcers for the past three winters (and I live in Canada!).

Discontent profile image
Discontent in reply to Howlinoldowl

Hi. I have been using neosporin, for inflammation, but since have been prescribed Nitro-bid. It is dangerous as far as blood thinning, but to say it is working, I just don'tknow. My desperation is overwhelming me, I need to function, as I am also a care-giver, and need my fingers. I will try this as well. It should not hurt any less. Thank-you

zenabb profile image
zenabb

Do you have a rheumatologist?

Discontent profile image
Discontent in reply to zenabb

Hi. Yes. Diagnosed in 1982 with SLE-Nephritis. Kidneys are stable. Thank-you.

kel55 profile image
kel55

Hi, I know this is going to sound same old stuff but have you looked at your diet for vasalators and constrictors? I have small vessel disease within which I have Raynaud's phenomenon anywhere on my body, particularly the extremities, yes I mean all of them. I also have vascular spasms, although all three could be the same just called differently?

What happens with me is that my vascular system contracts where it wants to so I don't consume anything to give it a helping hand. When you get into this it definitely opens your eyes, here's some examples:

Cough and cold medicine; they work by constricting blood flow

Migraine medicine; they work by constricting blood flow

Cocaine and designer drugs close up the vascular system

Some painkillers e.g. Tramadol

In general; the pharmacists counters

Vasalators include:

Nitrates; predominantly opens arteries but as an effect on veins

Potassium and iron at their correct levels, help nitrates

viagra; opens arteries (keep forgetting what it's called)

opioids; open veins, so coodeine is the painkiller of choice

Aspirin; antiplatelet, makes blood less sticky, therefore flows better

Some have unwanted side effects or wanted side effects😜, needs must. Morphine to me is majic! Like I said, I spasm (constrict, pinch etc) anywhere in my body, particularly around my heart, GTN (glycerol tri nitrate) is good and at times I literally feel t opening me up but as IV morphine goes in I feel my vascular system relax and open as my pain dissapears.

Cannabis from what I've read is a strange one! It relaxes while indulging but can be a severe vasoconstrictor when you stop indulging?

Kel

Discontent profile image
Discontent

Hi Kel55, this is discontent. I do not use any type of drugs to combat my pain. Morphine makes me nauseated, and some of the others I have no clue. I am using the nitro-bid cream and it seems to be working. My fingers are still tender a little bit, and swollen, but the tears have stopped other than when I hit them against something. They look terrible, as I like my nails pretty. I have SLE-Nephritis, and am doing all I can to keep this illness under control. My physical body is SLENDER and do I get looks of disdain or statements as if I am a drug smoker. None of the above. So thank-you for your input. I just want all of us who have these problems to get HEALED for a change and enjoy what life we have. Sincerely.

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