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Help for Raynaud's.


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#1 greypilgrim256

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Posted 13 October 2014 - 01:47 AM

Is there anything to help this other than layering clothing?  Medication seems out of the option, as it is only my right middle finger right now, but it does get it pretty bad.  Are there supplements that might help?  I am not lookiing forward to this winter. 



#2 Joelf

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Posted 13 October 2014 - 02:40 AM

Hi Greypilgrim,

 

I can sympathise, as I suffer with Raynaud's, particularly if I allow the core of my body to become chilled (air conditioning in supermarkets certainly affects it and makes it worse.)

 

We have a lot of information about Raynaud's on our medical page, including treatments and medications. We also have one of Amanda's super videos on Raynaud's Re-warming Techniques and I've found a thread on Raynaud's, which I hope you'll find helpful and informative.

 

Kind regards,


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#3 Amanda Thorpe

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Posted 13 October 2014 - 09:45 AM

Hello Greypilgrim

 

Well, I was going to signpost you to our videos but Jo already has!

 

Although my Raynaud's isn't bad I know that some people find it crippling, even with one finger it can be a problem.

 

I suspect you have found or will find ways of coping and hopefully others will share their tips, it's that time of year after all. Keep core body temperature up as the body diverts blood from the extremities to the brain and internal organs when it gets cold so just keeping hands warm is never going to be enough.

 

Take care.


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#4 Kathy D

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Posted 13 October 2014 - 01:31 PM

After 6 years of experimenting:

 

I have been hoarding gloves on sale from holiday sales and spring clearances.  I have them in car door pockets, gloveboxes, consoles, jacket/sweater\coat pockets, purse, nightstand, kitchen junk drawer, garage shelf, not enough room here to list all the places I stash pairs of gloves!   :emoticon-dont-know:

 

I stash disposable heat packs with all my gloves.  Once the blood flow in my hands or feet stop, gloves do not help, they need to be re-heated.  Also change socks frequently, my feet sweat and when my socks get moist it makes Raynauds much worse. (I already gave up diet soda, not ready to part with my COFFEE).  I also rotate my slippers and shoes frequently as they get moist too.

 

I have 2 electric heated throws in the house, both the same brand so the cords are interchangeable.  Sometimes I just bundle up the heated throws on my feet and hands like muffetts.  Last holiday I got a heated travel blanket that plugs in a car charger (cigarette lighter hole).  

 

Heated bed mattress pad and two furry pets that don't mind when I tuck freezing hands or feet under them. :)

 

I was told to warm them slowly by putting them in my arm pits.  When out and about it looks like a defensive posture (antisocial) so I have been tucking my fingers in my waistband on my hips.

 

I have a cold bathtub, I run an inch of hot water and let it set for awhile with a small heater on to warm everything up before I step in.  My old home had unusually high ceilings, dear husband put a plexiglass cover on it to keep the warm air in for me :great:

 

Bring gloves or an oven mitt when shopping for frozen items at the grocery store, even the refrigerated aisles can set me off.  I don't shop anymore in person but when I did I found shoes with thicker soles helped walking around concrete floors in stores.

 

Climate?  I am in a colder climate and know how to warm up.  Years ago I read about a woman in Arizona was really suffering, everything was air conditioned, interesting.  If and when I go to a restaurant, I bring gloves, jacket, and look to see if its by ventilation or air conditioning, the wait staff has always known the "warmer" booths.  If it was too chilly we know better now go somewhere else, not worth any damage to your appendages...

 

We are in the midst of major remodel we chose laminate kitchen countertops over granite that can get cold, since I sit in the kitchen a lot of the day.

 

Phew!  I know there are many more tips, pick and choose what works for you!


Diffuse Scleroderma Diagnosed March 2009

#5 greypilgrim256

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Posted 14 October 2014 - 08:15 AM

Thanks! I just bought a bunch of disposable hand warmers,  so far that is going great.  Also bought a few pair of thin glove linings.

 

Two fingers on my right hand started having some pus (Gross….>I know)it has come out from under the nail, which I assume is related to the Raynauds.  The last thing I want is a nail infection that won't heal because of less blood flow.  



#6 Kathy D

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Posted 14 October 2014 - 07:03 PM

In 2008 I helped a large truck stuck in the snow on my road,  I did not know what Raynauds was or that it was dangerous.  Long story short I had almost third degree frostbite, lost the pads to many of my fingers (painful!, and grosser than the pus lol), learned to type with only the good ones and had pus coming out from underneath my fingernails.  If you have pus you should see a doctor in case you need antibiotics!  I don't know how bad your fingers are but he may be able to give you some topical pain relieving creams too.  Why do you have pus?  Are you missing any areas of flesh?  Is the pus from ulcers?  And you are right, an infection with impaired blood flow can go bad fast, please get it checked. :)

 

PS: My favorite gloves are the thin stretchy ones. :)


Diffuse Scleroderma Diagnosed March 2009

#7 Amanda Thorpe

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Posted 15 October 2014 - 02:13 PM

Hello Greypilgrim

 

Warning, you may think this alarmist but after 7 years I sure don't...
 
Kathy D is totally correct, get to a doctor NOW, if needs be your ER. Every incidence of Raynaud's should be treated as an emergency because if it doesn't stop you can end up in hospital. All the more if you have pus because it means infection and as you have already identified poor blood flow will only make it all the worse.
 
Infection can led to gangrene which can lead to amputation, all of which guarantee pain and a lot of it. DO NOT try to manage this at home alone, you may be successful but if you are not you stand to loose part of your finger in worst case scenario. Look at Kathy Baker's slideshow, all of which started because of an infection under her fingernail and ended in amputation of the finger bit by bit, sorry but there it is. She says "In November 2006, my right index finger became infected underneath the fingernail. It became so painful I ended up at the emergency room where they removed the nail and gave me antibiotics. This didn't work. I went to my doctor who referred me to an ortho doc who first sliced the side of my finger and packed it to see if any infection would drain. This didn't work. I went back a week later and was given more antibiotics. This didn't work...Two weeks later I was back in surgery where he amputated the entire index finger in June of 2007."

 

Over 7 months Kathy lost her finger very painfully and slowly because of something as seeming minor as an infected fingernail. Last year I had cellulitis in my right hand, not exactly sure how but spent 10 long, pain filled days in hospital, the visit began with the possibility of losing my hand. Soon I go into hospital to have both big toenails removed because they became infected and died and I still don't know why as my blood flow is actually good! 

 

After 7 years I know that whatever it is our having scleroderma and Raynaud's will make it much worse and harder to treat for sure!

 

Take care.


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#8 Sweet

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Posted 16 October 2014 - 07:22 AM

Hi Greypilgrim

 

I just had one of the worst attacks I've ever had yesterday. There are medications that can help. You'e already been provided with a few terrific links, so I hope you find them helpful!

 

Keep us posted as to what works for you.


Warm and gentle hugs,

Pamela
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#9 Amanda Thorpe

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Posted 16 October 2014 - 07:57 AM

Hello Sweet

 

May I ask if your attacks have worsened over time?

 

Take care.


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#10 Shelley Ensz

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Posted 16 October 2014 - 03:55 PM

Hi Grey Pilgrim,

 

I'm with all the others.  Raynaud's is one thing, but pus is another one entirely.

 

It is extremely important for people with scleroderma or Raynaud's to get all infected ulcers treated immediately.  The combination of poor circulation with the Raynaud's plus immune system problems with scleroderma means that there is a great risk for gangrene and amputations.

 

I even had blood poisoning (sepsis) from just a tiny toe ulcer -- and that is fatal about 1/3 of the time. The sooner infections are treated, the easier they usually are to control.

 

If you haven't already, call your primary care doctor and see if you can be squeezed in, or go to an urgent care facility.  And do absolutely everything they say for taking care of it. Please.  Now.  Promise? Crisscross your heart?

 

Okay. Now that's settled, please let us know what you find out.  We all know it seems like a small thing to make a big deal out of, but believe me, this sort of small thing can be life and limb threatening with scleroderma.  So hie thee to a doctor and if you want, you can print this thread off and tell them that you've been advised to not delay evaluation and treatment by folks who have already been there, done that.

 

Of course, you can do this in fine Sclero Style, though!  Pack a good book, bring a non-caffeinated drink and a healthy snack. Play some uplifting music in the car, to and fro.  Sing along with it, even if you are off-key!  Smile and joke with all the nurses. Use hand wipes and sit as far away from the others in the waiting room as you can manage. An infected ulcer is one thing, picking up a hitchiking germ at the doctor's is another entirely.

 

:emoticons-group-hug:


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Shelley Ensz
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#11 greypilgrim256

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Posted 17 October 2014 - 04:29 AM

Thankfully it has gotten better.  No more swelling or redness and no more pus.  I will keep an eye out for it in the future.  The disposable hand warmers are working really well.  



#12 Amanda Thorpe

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Posted 20 October 2014 - 03:46 AM

Hello Greypilgrim

 

Now I bet you think I'm over the top and prior to 2013, I would have too but I now know we cannot underestimate the damage infection, coupled with poor blood flow and scleroderma can cause us.

 

I have had cellulitis 3 times from January to May 2013 and was hospitalised twice. Apart from the first time (clearly infected, swollen hand), you couldn't tell from looking at the wound that I had cellulitis, sure it was a bit red but...

 

Cellulitis is when the deeper layers of the skin and underlying tissue become infected, unless you have the obvious external symptom how would you know these deeper layers are infected? You wouldn't until YOU became ill. My telltale marker of cellulitis is a sudden, high temperature, I can become confused (I don't realise at the time) and I hear things. My last episode of cellulitis lead to IV antibiotics again, which lead to dehydration which lead to an acute kidney injury, add in clinical neglect and I almost died.

 

Prior to 2013 I thought all this talk of how people with scleroderma have to be hyper vigilant about things such as infections was an over reaction. I now know it's not and I also know thinking we can successfully manage these things ourselves can backfire spectacularly. We might get away with it once...

 

Infection can lead to cellulitis and I wouldn't wish that pain on anyone! Let's not forget gangrene and amputation!

 

Take care of yourself...and I won't say another word!


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#13 SSSandy

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Posted 27 October 2014 - 08:41 PM

I am a new member, 16 years of scleroderma with Raynauds, interstitial lung disease, GERD, ischemic bowel disease, and many more diagnoses. I wanted to respond to the Raynauds with infection (pus) under the nail.

In the past, one of my fingers was operated on due to not having enough circulation to the end of the fingertip.  The surgeon basically cut all the little nerve endings from the main vein that runs into the finger, allowing one main flow of blood.

The surgery seemed to help, but I was told later from my rheumatologist that our fingertips should "auto amputate" which meant to let the finger die on its own. 

 

The next time I started having trouble with unhealing tissue at the fingertip I used 1 part hydrogen peroxide and 2 parts warm water and soaked for about 2-3 minutes several times a day.  Keeping dry.  Over couple weeks I saw results but it took time.  I had pus about 2 weeks ago under my nail and I soaked it and my nail looks and feels so much better.  I hope this helps.  Be patient, keep it covered with dry gauze and I sleep with it uncovered at night. 

 

Best of luck.

Sandy



#14 Joelf

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Posted 28 October 2014 - 04:12 AM

Hi Sandy,

 

Welcome to these forums!

 

I'm sorry to hear that you've been suffering with Scleroderma and it's related problems for 16 years; I'm a comparative newcomer, having only been diagnosed for just over 5 years.

 

We have a link on our medical page Topical Treatments for Digital Ulcers: Creams and Solutions which does include a solution of hydrogen peroxide(1.5%-3.0%). I would just add a note of caution about soaking solutions as there's controversy in the medical world about such things as hydrogen peroxide and alcohol in 'soaks' because they can actually delay healing (the hydrogen peroxide and alcohol in sufficient amounts to be anti-bacterial also damage healthy tissue). Thankfully, I've never suffered with digital ulcers, which is a pleasure that I hope will be postponed indefinitely!!

 

Now that you've joined our community, I do hope that you will find our medical pages informative and helpful and I'm looking forward to reading your future posts.

 

Kind regards,


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#15 Amanda Thorpe

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Posted 28 October 2014 - 03:59 PM

Hello Sandy

 

Welcome to the forums, you have had a lot going on and seem to be managing your disease and I think you had a digital sympathectomy to improve blood flow.

 

It is always encouraging to meet someone who has been living with Raynaud's and scleroderma for so long, expecially for anyone coming here for the first time, newly diagnosed, thinking it's all over. We know it's not!

 

Take care.


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#16 Amanda Thorpe

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Posted 28 October 2014 - 04:13 PM

It is important to remember that Raynaud's with scleroderma can be a dangerous combo, the interrupted blood flow and scarring not only causes wounds, it slows and even prevents healing. As it happens, infection doesn't even need Raynaud's to cause us major problem just the scleroderma which is why I had cellulitis 3 times in 5 months and became so ill I nearly lost a hand and then me!

 

Auto amputating is famously, excruciating painful and happens because surgical amputation is not possible as the subsequent wound won't heal. It's not an alternative to surgery but  the last resort because of poor blood flow.

 

If you are considering self management of any wound, have a read of the personal stories about living with gangrene and amputation, which infection can lead to. One word repeats over and over again and that's PAIN. The pain associated with infections, gangrene, amputations ranges from excruciating to people being driven to the brink of suicide. Self management is great when it works but the risk if it doesn't is as extreme as it gets and of course it only has to get out of control once.

 

 

I have had foot ulcers for 4 years and I mean the same ulcer as in it never heals, just gets bigger/smaller/bigger and during that time they have been infected a few times and let me say infection means pain, I don't actually know why but I know for sure it does! Needless to say I have the nurses it quick sharp or see the doctor asap.

 

Clearly it's your choice what you do but the ISN party line is, please get medical advice for any infection and remember that Raynaud's in scleroderma can be severe.

 

Take care.


Amanda Thorpe
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