With Scleroderma, the Pain Is Relentless

Amy Gietzen avatar

by Amy Gietzen |

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Picture in your mind the most painful thing that has ever happened to you. Now zero in on exactly what the pain felt like, looked like, or even smelled like. For me, there is no greater pain than having ulcerated wounds.

I never really knew the feeling of true pain until I was diagnosed with scleroderma. Of course, I’d experienced injuries when I was younger, including stubbed toes and a broken collarbone. But looking back, those injuries were nothing compared to the pain I endure when treating ulcerated sores from living with scleroderma and Raynaud’s phenomenon for over 20 years.

The pain is so intense that at times, I can’t eat or sleep. It’s hard to get dressed, take a shower, and do other daily tasks. Even brushing my teeth can be painful. This all-consuming pain has left me like a shell of the person I once was.

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No two patients are alike, and sometimes I am envious of others who haven’t had to deal with wounds as severe as mine. I’ve had to deal with ulcerated wounds on every part of my body, from my fingers and toes to my mouth and inner nose. Ulcers have affected every extremity at some point.

At times, the pain from these wounds has completely halted my life and caused me to shy away from even shaking people’s hands. Doing so would cause me to wince and then be forced to explain why I had such a strange reaction.

I remember waking up once to a black ring finger that looked as if someone had charbroiled my fingertip. This was the start of my battle with scleroderma wounds, and it continues to be a long and tediously painful journey with no end in sight.

Sometimes an infection occurs, and the wound can become gangrenous. In those instances, tissue can die, causing me to lose precious layers of skin. Over the years, I’ve lost most of my fingertips and part of my toes.

Having these wounds led me to my first experience with narcotic pain prescriptions. I thought, “This is it! My pain will subside, and I can get back to my regular life.” But scleroderma had other plans for me. Some of the strongest pain medications, creams, and procedures didn’t even affect the agony I was dealing with.

For years, I’ve tried every type of wound management treatment. I’ve undergone hyperbaric treatments for 40 weeks. I subjected myself to electrostimulation. I’ve sat through rigorous debridement sessions to remove contaminated tissue without anesthesia. These treatments involved peeling dead, gangrenous skin off healthy, clean skin to stimulate wound healing — again, with no anesthesia. The pain was so unbearable at times that I threw up.

Nothing seemed to prompt the healing process or ease the pain I had to endure.

The funny thing about scleroderma is that there is no known cure, and its cause is unknown. It can be tricky to diagnose, and complicated to treat and manage. As a patient, that can be disheartening at the best of times, and infuriating at the worst of times.

In response, I try to keep my extremities as warm and dry as possible. I even bag up my hands while taking a shower to keep the moisture out. I stimulate blood flow by doing certain exercises. And lastly, I’ve found an excellent wound-care specialist. Anytime I suspect a wound is appearing, I’ll make an appointment, and together we’ll find ways to treat it by cutting its appearance short from the start.

Until a cure for scleroderma is discovered, or at least a viable treatment is found, we must remain diligent and continue to do the things that work for us. And we must seek help when we need it. While patience isn’t my strong suit, it’s all I have for now, and all I can do is wait and endure.


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

Damaso Diaz avatar

Damaso Diaz

I live in Florida I have 71 years and 8 years with scleroderma. When coming the winter and only in some days is cold, I suffer with my Raynaud syndrome. I am thinking is pretty hard for a people that live in state where the winter have a cold temperature. I am grateful I don't have ulcers.
I wish the best,
Damaso

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Amy Gietzen avatar

Amy Gietzen

Thank you so much for sharing! Stay warm.

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Linda Durnan avatar

Linda Durnan

I thought I had bad ulcers until I read what you are going through. No doubt about it, scleroderma is a nasty disease. When I have a bad bout of ulcers on my fingers I use a waterproof arm protector I bought from a surgical supply store and it works wonderfully. I also have heated gloves, vest and a jacket that help deal with the cold. One source is Gerbing's that sells heated motorcycle clothing.

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Amy Gietzen avatar

Amy Gietzen

Yes! I have tried so many hacks to help heal these little buggers! Thank you for your thoughts.

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SHEILA L DAUDELIN avatar

SHEILA L DAUDELIN

I have had scleroderma since 2011 . I think that mine is very mild compared to others .. I feel bad for all of the people who suffer so much . I usually have my bad days in the winter and because of the Reynold's I freeze to death .I feel like I must have hypothermia . The only relief I have is to fill my tub with warm water . The pain from scleroderma is fleeting and I have a hard time describing it . I have days that I stay in bed all day . I have not experienced anything like you have described . Prayers to all .

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Amy Gietzen avatar

Amy Gietzen

My thoughts and prayers are with you too. Saty as warm as you can.

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Sandra Duderstadt avatar

Sandra Duderstadt

My dear,sweet,Brave strong daughter-in- law has scleroderma.She is so brave and never complains.I don’t know how she does all.I pray for a cure every day.I wish I could do more,I feel so helpless to help her.BLESS you all.

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Amy Gietzen avatar

Amy Gietzen

Thank you, you are so sweet!

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Kim Krog avatar

Kim Krog

I feel like I know you. I have been reading everything you write. It’s astonishing to me how much worldly wisdom you possess (being such a youngin) on the subject of Scleroderma.
I also live in Buffalo New York where it is very very cold. I’ve had Scleroderma more than 20 years.
Girlfriend you have such an upbeat positive manner about you!

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Amy Gietzen avatar

Amy Gietzen

Wow small world! Thank you for your kind remarks! We should meet up and chat!

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Jose avatar

Jose

I live in Australia and was diagnosed with scleroderma 11 years ago. The following year later all my fingers were swollen and white and without warning, the top joint of one finger went black. The pain was unbearable. I spent a day in the emergency room at the local hospital where i received morphine for pain. The hospital pharmacist called a colleague in Canada to ask if they knew of any treatment for a 'Raynauds' attack as our emergency doctors didn't know what to do other than amputate the finger. The Canadian doctor advised them to spray the finger with nitro-lingual spray as that would force the small blood vessels open to enable blood flow. They sprayed my fingers constantly throughout the day and the black area began to fade as the blood returned to all the fingers. I was sent home with painkillers and a supply of the spray. Within a couple of days a large ulcer appeared on that finger but by then the finger was turning pink again. The ulcer worked its way right up to the nail where it finally healed up. That took about three weeks. The nail was loose and the very tip of that finger was gone, but the finger was saved. It's never happened again because at the first sign of white or swollen fingers, I spray them with nitro-lingual. I wear battery operated heated gloves inside stores using air conditioning. A rheumatologist told me to always keep my head, feet and trunk warm to prevent losing body heat so I wear a thermal undershirt under my clothes. I always wear a wooly hat as well as gloves when in any cold environment. All my fingers are fine now apart from a little puffiness because I keep them warm. I still carry nitro-lingual spray in my purse 'just in case' although i rarely need it now. My doctor replaces the spray every six months to ensure it's active. Whenever i get impatient with needing gloves I recall that day in the emergency room, the horrible pain and the threat of amputation. That's enough motivation for me to practice prevention. Taking precautions has become a habit. I'm posting this story as it may help someone else.

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Amy Gietzen avatar

Amy Gietzen

Wow! What an amazing story! Thank you for sharing!!

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Jose avatar

Jose

Thank you Amy. You're an inspiration, for finding the strength to reach out to encourage others. Scleroderma is a constant learning curve. I've found it helps to forget current fashion and dress according to the need for constant warmth. I haven't worn a dress or 'normal' shoes for 10 years because they can't retain body heat. All mine went to the charity store. I became an online 'sales' shopper with my own 'look', and search out smart casual clothes that keep me warm enough regardless of the seasons. I love my super soft, super warm suede Canadian 'snow' boots and wear them year round, inside as well as outside because they ease my painful scleroderma feet. USA jeans have the smartest 'cut' and always look good, even with warm tights or leg warmers underneath. Flared jeans are perfect to make my thick boots look 'balanced'. When a friend once asked me to remove my footwear before entering her home, i explained I can no longer walk in bare feet and suggested we meet elsewhere instead. Regardless of age, we need to assert ourselves and get into the habit of putting our own needs for safety and comfort ahead of other people's often thoughtless and needless demands. Recently i had to take a trip and when a flight attendant who'd pushed me in a wheelchair to the airport cab rank insisted I travel in a vehicle too high off the ground for me to climb into, I didn't even bother to explain 'why' i chose to wait for a normal car. I just said i would wait. She probably thought I was being 'difficult' but i didn't care. The able bodied often don't understand even after we explain it to them. People with scleroderma often need to put ourselves first to prevent injury. It's easier said than done but developing assertiveness is essential to minimise stress on the body as well as the mind.

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Mary Iovine avatar

Mary Iovine

I wanted to comment on a new pain management tool my doctor used that WORKED!!! I'm hoping it may help some. He put me on a calcium channel blocker and a steroid. I'm human again. I can walk faster, move with ease, and enjoy my life once again.

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Amy Houston avatar

Amy Houston

Thank you so much for posting this! I have never heard from another person who knows what it’s like.
I was diagnosed at 21 and have been battling for 34 years. All my fingers are contracted and I’ve lost all the toes on my right foot. I’m currently on my way to losing all those on the left too. Usually ulcers were the cause. After getting an ulcer over the joint my body would attack and slowly bend the finger down or infect the bone.
The pain! Doctors do not understand the pain of ischemia ulcers. It is nerve pain which is highly resistant to treatment. I did find one medication that helped but doctors don’t like to prescribe it. I do have one question, what do you do to stop an ulcer? I know when one is coming but have yet to figure out how to help.

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Amy Gietzen avatar

Amy Gietzen

Hi Amy, first wow! thank you for sharing all of that with me and I can only imagine the heartache and trauma you have gone through. I haven't figured out how to stop ulcers but the preventative care I do helps. I keep my hands and feet as warm as I can 247. I also keep them dry including wrapping them for my shower. I also use prescribed vasodilators to help promote circulation and I have had two hand sympathectomies one on each hand to help redirect blood flow. That helped a ton. But talk with your doctor about these suggestions first to get the go-ahead! STAY WARM MY FRIEND!!

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Brenda Hughes avatar

Brenda Hughes

Hi Amy,
In your last paragraph, you stated: "Anytime I suspect a wound is appearing, I’ll make an appointment, and together we’ll find ways to treat it by cutting its appearance short from the start." What have you done to cut a wound's appearance? What made the difference?
.

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Marita Nelson avatar

Marita Nelson

I get tired of people's stupid comments too. I let them think whatever thy want to its easier then explaining, I try to use tricks so they either don't notice or at least won't share their comments when out to eat with others I ask for a box when ordering. When the food comes I put half of the dinner in the box leaving half on the plate. Then maybe I will finish when thy do so not to draw so much attention to myself.

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Marita Nelson avatar

Marita Nelson

I use CBD oil. It helps with a little pain. I also got my medical canibis card. That I don't tell people that I use it because I don't want to explain myself and I don't want to be asked to buy for them.

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And avatar

And

I’ve had scleroderma for years although I just found out about it 6 months ago. I suffered all sorts of bizarre and unrelated maladies on a regular basis and chased down most of them when each symptom became unbearable. Hypochondria anyone? No matter what I did or didn’t do or take, eventually each symptom would resolve as much as it was going to and something else would strike up the band and reek havoc somewhere else. I might add that I believe the nexus was my participation in a clinical trial after cancer surgery that involved 5 weeks of daily radiation a few years ago. I can practically track the progression in my mind. Anyway, I kept my suffering mostly to myself as I didn’t want to be one of those old people from whom everyone moon dances away from. Nobody wants to hear let alone be obliged to remark about anyone else's surgeries, bowel irregularities, stunts, fungi, rashes et al. white patches had been showing up for a couple of years and lumps and bruises and I just attributed to old age and ignored them until recently they started spreading and becoming remarkable. The dermatologist took several biopsies, although she immediately recognized the lesions as scleroderma. This news delighted me. Just knowing there’s a reason for all these chain linked tiny tragedies freed me from trying to get to the bottom of each one. I file this under the too bad so sad category. I’ll deal with the symptoms as they arise as I have been. Forget about ping ponging between doctors who can do nothing for me. I know I’m lucky because I’m retired and can rest or take care of myself whenever. Most don’t have that luxury. I send prayers to everyone suffering from this.

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Sheri Chandler avatar

Sheri Chandler

Hello. I am looking for some information. Last summer I developed very chapped and swollen lips extending to the vermillion borders. At first it felt like wintry chapped lips but I wasn’t winter. They became more red and swollen on the inside of my bottom lip as well. I developed ulcers on the inner lip and 2-3 fever blisters on my upper outer lip as well as chelitis in the angular parts of both sides of my mouth which were deep and bled often (I have had mouth ulcers only in recent years but Herpes type 1 frequently since I was a young child)

After a week or 10 days I began to seek medical care. To make this shorter, I will just say I saw 3 different providers and received 4 different diagnoses, none of which were correct.
My mouth would start to heal and I could GENTLY brush my teeth again, then it would repeat as above. I finally got in to see a dermatologist in December, 2021. . He put me on Acyclovir BID, as well as some cloches tid and a steroid ointment for my mouth bid.
He ordered blood work to r/o Sjögren’s syndrome and ordered a tissue biopsy. The blood work was negative and came back just before the biopsy was scheduled and we had snow that day as well, so he decided to forego the biopsy.

Next, he had me come in for allergy testing. The results were allergies to fragrance mixtures and to Balsam of Peru. Needless to say I haven’t found a smoking gun.

The last thing he casually mentioned to me was when I tried to explain that although the blisters were healed and ulcers gone, my lips still feel “extremely tender”, as in they hurt if a piece of crust on soft bread touched them, dry and chapped, and felt very stretched if I smiled. And I can’t open my mouth as far or do oral hygiene as effectively as I used to. He casually said that could make sense if you have Scleroderma.
He sent me home 3 weeks ago and said to return in 6 weeks.

Ideas or thoughts would be appreciated.

Thank you,
Sheri

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