My Top 7 Scleroderma Self-care Items

Amy Baker avatar

by Amy Baker |

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When dealing with scleroderma, some things are necessities. Following are the seven must-have items that best help me to manage symptoms and practice the best self-care possible.

1. Heating pad

I need my heating pad. I keep one on the couch. Yes, old lady business right here, but the body wants what the body wants. My body aches an awful lot. The heat helps to penetrate my muscles and joints and relieve the throbbing, painful feeling.

Here’s a piece of fantastic information: Heating pads can also come with an attachment for your vehicle. You can plug it right in. They are excellent on long trips and keep you warm if the other passengers want it cooler.

2. Gel ice pack

I just discussed the heat, but let’s get into the cold for a moment. Scleroderma patients are prone to different skin manifestations. For example, chronic hives are my nemesis. To say I despise these exasperating things is an understatement.

I have tried everything to find relief — antihistamines, topical creams, prescribed medication — and comfort still eluded me. Ice packs provided the relief I was seeking. They took away the heat from those troublesome eruptions and relieved the itching and the swelling.

A quick tip: Use a towel as a barrier to keep the ice pack from directly touching the skin.

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3. Heating blanket

I keep this on my bed. Yes, even in the summer. The worst thing for a scleroderma patient with Raynaud’s phenomenon is cold, and air conditioning will cause this painful occurrence to rear its ugly head.

I have neuropathy in my hands and feet — thanks, scleroderma! I don’t know about you, but the cold causes me to experience severe foot and leg cramps. And there is nothing more jarring than waking up in the middle of the night to excruciating cramps. Heating blankets allow my legs and feet to stay warm.

If you don’t have a heating blanket and are unceremoniously awakened with a vicious cramp, run it under hot water. I cannot tell you how many times I’ve hobbled to the bathroom, run the water, and sat with my feet submerged until the cramps subsided.

4. Hot hands/warm hands

If you have scleroderma, you probably also suffer from Raynaud’s phenomenon. My hands get so cold it makes even the slightest movement painful. Air conditioning or any level of cold air tends to kick my Raynaud’s into gear. Stress also does it for me.

I keep hand warmers in my purse, in my vehicle, and stashed around the house. I’ve found it’s best to be prepared to stave off any flares. These are not to be used in place of your prescribed medication. They can be used in addition to your meds to offer you the most comfort possible.

5. Thick, fluffy socks

In my humble opinion, the more ridiculous the socks, the better. I love colorful, funny ones. Why? When you feel icky and need a smile, you can look down at your feet!

Nonskid works best if you want to wear them around the house. Keeping your tootsies warm is essential. Mine get ice cold. When they are cold, they cramp. And I’m not too fond of cramping.

A quick tip: Although a tad more expensive, getting sherpa-lined socks is without a doubt worth it.

6. Lotion

Anyone with scleroderma knows that itching can drive you up a wall. There are several topical ointments and creams you may be prescribed. However, I use Eucerin Skin Calming Itch Relief Treatment.

I’ve tried different types of lotion. Oh my goodness, the money I’ve spent on finding a suitable cream has been ridiculous. If you read this column, you know the trials of having itchy skin.

The extreme dryness of your skin is often seen during active inflammation. It’s one of my telltale signs. To respond to this, stay moisturized. But contact your physician if over-the-counter methods aren’t working for you.

7. Jar, can lid opener

This adaptive tool is genuinely something all scleroderma patients need in their arsenal. My hands have arthritis, and my grip strength is nowhere near what it used to be. These little tools have allowed me to maintain my independence.

Here’s my question for the folks who package products: Who tightens them up? The Hulk? I had a hard time allowing myself to buy these items. If I bought them, I was admitting my inability to do something as simple as opening a jar.

But I’m glad I did. And my hands are happy I did, too.

A quick tip: If you find you cannot open something that has been vacuum-sealed — you know, the thing that pops up when you open it? — take something sharp and stab it. It will release the pressure, and you can open the jar! Easy peasy.

This list is not all-inclusive. Find your comfort items and make them work for you. You will be happy you did.

What items are on your must-have care list? Please share in the comments below. 


Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to scleroderma.

Comments

Debra Robitaille avatar

Debra Robitaille

Lee Valley sells a great gadget to pop the seal on jar lids. $16.90 Cdn
Easy to use on all jars and jars are simple to open after seal is broken!

Reply
Melodie Perri avatar

Melodie Perri

Lobster/Crab claw cracker to open water bottles etc.
Hymed Original Reconstructive Creme
Aquegel nasal moisturizer

Reply
Maria Papaleo avatar

Maria Papaleo

Wish people believed me
My outward appearance looks normal right now.
I suffer a lot and when I do complaining it’s a peak
I guess if you don’t have this disease you don’t
Understand it
All of these tips are great! I’m not crazy

Reply
Taitia S avatar

Taitia S

My brother-in-law found me these rechargeable hand warmers that are a godsend, called OCOOPA. No batteries to change. I have 2 so I can always keep one charged. They are bulkier than those outdoorsman hand/feet warmers (so I still use those) but fit in a hoodie or vest pocket. Best thing is they heat right up and they are hot! 3 different heat settings.

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Jeannine avatar

Jeannine

And those rechargeable hand warmers stay warm a long time!

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Marita avatar

Marita

I use a button gadget, especially for small Buttons. It has a large rubber handle for easy holding. I use a braslet helper. It holds one end of the braslet steady so you can (maybe) grab the other end with the clasp. I use self theading needles so I can sew since I can't thread a needle with my finger tips being numbed. I use nitroglycerin cream (rx.for the heart) to help with my freezing finger tips, it's unbelievable how it opens up the blood vessels. You can actually watch then turn blue to pink. when I drop my sewing needle on the floor or paper clips, I use a magnet. Velcro hair rollers are easier to use because they stay in without having to try to use Bobby pins.

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Sue avatar

Sue

Marita thanks for some of your tips , love the magnet idea for needles paper clips etc

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Barbara Phipard avatar

Barbara Phipard

The Bombas sock/slippers with grippers are really nice!

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CAROL LIEBERBAUM avatar

CAROL LIEBERBAUM

many thanks!

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Henry Levenstein avatar

Henry Levenstein

I am new to the joys of scleroderma, diagnosed last fall, and I appreciate the author of this list. I'd like to add a couple of useful items, since neither my knees nor my ankles work like the good old days (i.e.-last year):
-one of several gizmos available to help put on socks. (Amazon, etc.)
-Extra-long shoehorns, eighteen inches or so. My podiatrist gives 'em out as swag. There's plenty of more feature-rich types available from Jeff Bezos' crew that I haven't tried. Maybe some loving friend or family member will get me one (or several) for my birthday, to keep around the house.
I am also interested in posting to the newsletter myself. How, anybody?

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Daisy avatar

Daisy

Shearling house slippers, electric throw for the couch where I read, electric gloves, a
Kichwit Adjustable Jar Opener for Arthritis (available on Amazon), Zippo hand warmers (refillable with zippo lighter fluid), button tool for fastening small buttons. bathtub/shower chair. I also use an adjustable height drafting chair with ring footrest when doing any counter work in the kitchen. My legs can't bear to stand in one spot (venous stasis.) The chair raises me high enough to work seated at the kitchen counter.

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N. Forcier avatar

N. Forcier

All good items to keep close. But let’s not forget that the most important tools within your control are to stay very active, add frequent daily stretches, and maintain a good diet full of leafy greens, ginger and curcuma and, most importantly, free of products that increases inflammation (such as dairy and gluten).

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Brenda H Plumley avatar

Brenda H Plumley

I have been dealing with this for over 25 years. One of the can't live withouts is my electric mattress pad. I can pre heat before going to bed so that the cold sheets don't send me cramps and pain. You can buy them with wireless remotes, right and left heat control in case your partner does not need the heat, also have sone control. That is where you can control how hot or if no heat on head area, middle and lower area of the body. I use mine all years long. Check it out I like it much better than heating blanket

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Maria Baum avatar

Maria Baum

After a head on collision (a Dr in Naples Fl on the phone), flown to hospital with broken neck, right breast, right ribs broken, because of the seat belt, teeth broken, etc., I received blood transfusion for internal bleeding. That was on 09.14.2018. After the blood transfusion I had a small patch that looked like allergy. Was prescribed fungus cream. Two months later I had full blown Morphea. Still today, after more than three years, my skin burns, prednisone helps but I blow up. I’ve tried creams and a couple of years, three times a week of UV light. The only thing that helps is the ice pack. I can’t drive, can’t get dressed, and the man that hit us, is enjoying life.

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iris gerosky avatar

iris gerosky

I have been having a bad season with Reynaud's(awful,purple!!) and vertigo(Menuires). I dread taking a shower because I get horribly dizzy, faint and nauseous afterwards. Example - this afternoon I had a major vertigo spell - scared me badly!! Went to bed immediately(wet hair and all!!) and slept for 4 hours(deeply, almost dopey!) Up now and am exhausted and fairly unsteady on my feet -- back to bed! Does anyone else have this issue?? Help????

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