Patient Comments: Scleroderma - Symptoms and Signs

Question:

What are your scleroderma symptoms and signs? Submit Your Comment

Comment from: merimac, 55-64 Female (Patient) Published: February 01

I am 60 years old and have limited scleroderma. My hands and wrist are swollen, red and hurt badly. My face is swollen and hard at all times. I have a rash around my neck that itches but doesn't bother me otherwise. I have not taken any medication for this after trying prednisone which made my back hurt and my face swell more. I started swelling in May 2015. I took it upon myself to try natural approaches. So I'm only into about 9 months. I started taking high doses of magnesium, NAC (N-acetylcysteine), and ubiquinol for the calcium deposits I feel in the top of my head and around wrists. I also take Motrin for the body aches and pain. I will do some fasting in the future because I feel better when I don't eat a lot. I also have a proper diet of fruits and veggies. No smoke or drink. I will eventually eliminate all meat. I can see myself doing ok with this if it stays on hands and face. I will have blood tests done eventually for antibodies.

Comment from: Patrick, 25-34 Male (Patient) Published: July 21

I am 25 now and was diagnosed with scleroderma when I was 23. I was perfectly healthy and in the army at the time. I started feeling some pain in my shoulders but thought nothing of it. Then pain in my calves, and that's when I went in. Shortly after, I started swelling up, especially my fingers and ankles. The doctors first thought I was having blood clots, and thought I had a heart problem. After about 6 months of seeing doctors, I was diagnosed with scleroderma and eosinophilic fasciitis. I have learned to live with it, it is worse in my hands than anywhere, though my skin is patchy and tough almost everywhere, and shiny, and I have been losing hair on my body as well. I have been through physical therapy and do exercises and will be seeing a lung specialist next month to see if it's affecting my lungs at all. I have read some pretty rough stories on here, and my heart goes out to all of you! Hopefully they find a cure for this!

Comment from: Retired Paramedic, 55-64 Male (Patient) Published: July 08

I have red blotches on face and chest, swelling discolored legs, and feet with frozen and deformed toes. I have constant head ache with jaw, tooth, neck, back, hip, and feet involvement. I also have difficulty swallowing, my teeth hurt, rotting and breaking off. Besides scleroderma I have pulmonary arterial hypertension, interstitial pulmonary fibrosis, chronic insomnia, chronic constipation, and depression.

Comment from: Ina, 55-64 Female (Patient) Published: October 18

I have black and purple raised lumps on fingers that never go away permanently. Also my blood vessels break easily with too much pressure. You can actually see the throbbing before damage is done. I also have the worst burning sensation, I still have permanent little black spots on my fingers with lots of broken raised purple veins in hands and fingers.

Comment from: Elizabeth, 45-54 Female (Patient) Published: April 04

I've had linear scleroderma since I was 7. I am now 53. I have found that cold water wraps help alleviate the heat associated with an attack. Most dermatologists and rheumatologists are impressed with my knowledge of the disorder. I have also found that a sudden rise in temperature outdoors usually precedes an attack. I also use Preperation H ointment to alleviate the dryness and the tightness that is part of this disorder. I have found that limiting my salt intake is helpful in controlling the swelling in my left foot and ankle.

Comment from: carolyn, 45-54 Male (Patient) Published: April 19

I am 75 and lately twice I have been woken up at night with sweating and nausea that last for about two hours.

Comment from: silvergal, 45-54 Female (Patient) Published: December 09

My left eye runs all the time, and I have pain in upper and left jaw from trigeminal neuralgia. I went to the dentist but the medicine he gave me does not take it away. It feels like nails in my jaw. I cannot eat hot food. I have my upper and lower plates. It feels like sharp needles in the jaw. I am going to the dentist tomorrow. The pain is so sharp, I need help.

Comment from: CORAL, 35-44 Female (Patient) Published: December 16

I don't know what exactly my problem is because some of the doctors think that it is vitiligo and a doctor said that it is morphea. It is like a circle about 3 cm and it expands with another circle like the first.

Published: June 04

My mother has had Raynaud's and scleroderma for years now. One of the worst things is when she eats she would get attacks where she would gag and cough up mucus. These episodes would last for hours and sometimes a day or more. She wouldn't feel better until all mucus was out. Then she would be good for days but it would happen again. A few weeks ago she got a virus that made her go incoherent and pass out. She had fever and was dehydrated. She spent one night in hospital. She came home with antibiotics but was very week and took 3 weeks to recover. The amazing thing is she has not had the mucus problem since she had the virus. Either the virus or the antibiotics ended that problem. So far it hasn't returned and it has been over a month.

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Comment from: Barbara, 65-74 Female (Patient) Published: May 30

Here is a positive story about scleroderma. I was diagnosed 6 years ago with diffuse scleroderma. At the time of my diagnosis I already had pulmonary fibrosis and within months went into kidney failure. My skin was stretched tight over all parts of my body and the initial medication resulted in a lot of hair loss. I was a mess. However, my doctors kept close track of my progress, adjusting and adding new medications as needed. Three years ago I was sent for double-lung transplant assessment as it was thought that I would not make it without. Today, without that transplant I feel healthy, my skin has softened and returned to its previous state, my kidney failure is managed (so far without dialysis), and my pulmonary hypertension and fibrosis is being monitored, but does not require treatment at this time. So, just wanted to say that life can improve and when I was in my worst condition I would have liked to have heard some good news because most of the sites I checked made me feel despair. Find the most scleroderma-knowledgeable doctors in your area, then work with them to aggressively manage your disease. There may be no cure, but there can still be good quality of life.

Comment from: 65-74 Female (Caregiver) Published: May 09

My mom has had Systemic Scleroderma since 1992, that we know of. She was misdiagnosed and we started off seeing a rheumatologist for answers. She was given Minocycline, as part of a research program, but quickly got off of it. She wanted quality over quantity. My mother took her illness into her own hands and researched natural medications. She happily spent 15 years without conventional medicines until she was diagnosed with Pulmonary Hypertension. She is now forced to take Revatio and a few other meds but she is still taking her disease into her own hands. Her diet and exercise is essential. Don't give up hope and always trust your body. Unfortunately, this disease is different for everyone and so are the symptoms.

Comment from: Red, (Patient) Published: April 04

My sister was diagnosed with scleroderma (morphea) 14 years ago when she was 12. Started out as what looked like bruises along the back of her left arm, and slowly, the "bruises" turned into scar tissue. After about a year or so, she was diagnosed. Now, the back of her left arm, including portions of her shoulder, wrist, hand, and the pinkie and ring finger on her left hand has severe scarring - shiny, thickened, inflamed and discolored skin - with slight bone deformities in her two affected fingers, as well as small calcium deposits on her fingers and elbow.

Comment from: anna, 45-54 Male (Caregiver) Published: February 22

My husband is 48 and has been diagnosed 5 years but we have been seeing the dr. since 1997 but no one could tell us anything. He has Raynaud's to both hands and has the butterfly rash on his nose he does have hypertension. These are the only symptoms all his blood tests are neg. he had gastric by-pass 3 years ago and has done well with that. His fingers having starting having contraction toward the palm I am hoping that this is from a vitamin deficiency the dr. has drawn blood and we will know Monday. When he has any change at all it worries me! I will pray for everyone!!!

Comment from: Pasqual, 35-44 Male (Patient) Published: January 19

I was diagnosed with localized Scleroderma, also called Morphea, six months ago. At first I had a one inch shinny patch on my elbow and then another patch, about four inch, developed on the right leg. My dermatologist prescribed me a cream called Dovonex (pretty expensive cream). I used it for a couple of months but I did not see any difference. I addition the cream was making my muscle sore at night. I started using Jergens over the counter cream. It helps the skin stay moist when I use it twice a day. Sometimes, depending on how I sleep, my leg muscle hurts. I just turn on the other side and pain goes away. Other than that the condition does not bother me. I just try to ignore and go on with my life. Hopefully someone will develop an effective drug someday.

Comment from: marivan, 55-64 Female (Patient) Published: January 19

My doctor finally diagnosed me, (after seeing her for 10 years and her insisting I had Fibro all those years) with Crest Syndrome and MCTD, (mixed connective tissue disease), which includes lupus, scleroderma, Raynaud's, etc. I have Gerd, IBS, heart pains and high blood pressure with high heart rates, trouble breathing, whenever I try to eat, walk, etc. and now my esophagus is not doing well. Sometimes I can't swallow at all, other times, while drinking my throat closes up and I end up gagging. I'm on 300 mgs of morphine with Norco for break through pain, and all kinds of medications for all my other symptoms. I also have a lot of swelling throughout my body and I have to wear gloves to try to keep my hands warm. I'm always cold, too. I'm homebound and use a power chair because I can't walk without severe pain. I have a high degree of pain tolerance and the pain medication helps a little. But, I have a deep faith, pray every night and try to keep a smiling face every day, when I can. I have no idea of my future, except to know I may not last 10 years. I'm not afraid.

Comment from: Lisa, 35-44 Female (Patient) Published: September 26

I am 42 years old and was first diagnosed with Raynauds Syndrome about 13 years ago. My fingers would turn blue and white with slight temperature changes. Then i noticed my toes were turning white. Then my tongue turned white and gave a burning sensation. I was given NIFEDIPINE by my consultant. This hasn't made much difference to my symptoms really. About 4 years ago I found it difficult to swallow food. It would get lodged in my gullet and make me vomit. I had a few endoscopic investigations and was given medication to help. I also suffer with my thyroid. I have a lot of flushing on my face which I find very embarrassing. August 2011 I had trouble breathing and was diagnosed with a chest infection. I was given an inhaler and steroids. I appreciate that medical staff can only try their best to help but I just feel like I'm being passed around as a guinea pig and nothing is really helping my symptoms.

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Comment from: dorian, 45-54 Female (Patient) Published: May 18

I was recently diagnosed about a year ago with scleroderma. I have found that my rheumatologist does not give me much information. I do know that I have a lot of pain in my arms, hands, and hips. I have swelling in my joints in my hands. I also have severe psoriasis. My hands are sensitive to cold. I recently started having headaches, which is a symptom that came on suddenly. I found that my skin is very sore on my head and the left side of my face. My eyes are sensitive to light, and it is painful. I have problems with heartburn and digestion. However, since I don't get a lot of info from my doctor, I am not sure if all of this is related. My doctor just asks me if I have trouble breathing, if I have thickening of the skin, and if my hands or joints have been swelling up.

Comment from: Wynn, 25-34 Female (Patient) Published: May 16

I was diagnosed with localized (linear) scleroderma in 1988 at the age of 2. I had puffy, shiny skin on top of my right foot and was put on prednisone and penicillin. Over the years, I developed patches up the sides of both legs and under my right buttock. These patches have lightened and the skin has thinned. I also had some involvement in my left shoulder and in my hands when I was very young, but this too seems to have faded so that I barely notice it. I have limited mobility in my legs because my hamstrings and Achilles tendons are too tight. I underwent surgery at age 7 to lengthen my right Achilles tendon, and at age 14 to release tendons on my left foot that were pulling my toes straight up. My rheumatologist at the time said intensive physical therapy and five years of methotrexate during puberty kept me out of a wheelchair due to my tight tendons. Today I function pretty normally, primarily dealing with stiffness, fatigue and a weak immune system.

Comment from: leadsledwilly, 55-64 Male (Patient) Published: February 28

I believe by my symptoms that I have "Linear Scleroderma" I have scaly white spots surrounded by tight reddish brown skin (I'm Caucasian) on my lower right leg (below knee) thickening at the ankle with a dry skin reddish brown foot and Hyper sensitive tip of the big toe. All predisposed to fluid retention handled by a double dose of Furosamide (pee pills). These leg scales used to peel off but now they are seven layers deep and leave a bleeding hole when removed. Soaking in hot soapy water does little good but feels pleasant for awhile following the soak and gentle toweling. NOWHERE in your discussion do you speak of a treatment for this kind of Scleroderma! What really bothers me is the V.A. told me it was just dry skin and gave me cream.

Comment from: riana, 45-54 Female (Patient) Published: December 05

I'm a 53 year old female. I was diagnosed in 2000 with Raynaud's and systemic sclerosis (scleroderma). Little Raynaud's involvement so far, not really noticeable and I am in 100 percent healthy condition so far after 13 years. In 2000 after tests there was mild esophagus involvement which till now I do not experience. I am on no medication.

Comment from: Islander, 55-64 Female (Patient) Published: March 13

I am 60 now and found out about my scleroderma from a thick skin plaque biopsy taken in the fall of 2012, which was developing near my right hip. For about twenty years it was believed that I had chronic fatique syndrome. I also have had carpal tunnel in both hands, having the operation done on one hand only to date. I too suffer from having swollen hands, esp. at night and early morning. Numbness in the hands and legs seems to be occuring more frequently. My muscles are slowly loosing their strength along with some jabbing pain from time to time in the long muscles in my arms and legs. There is also some joint pain, even in the feet. I have had gastro issues including frequent nausea, bloating etc. Also unexpected weight loss of about 25 pounds, but still a normal weight for my height. I regularly need ten to twelve hours of sleep and usually in bed by eight. Try to walk or do some yoga daily along with household duties, but it's all slow going! So far, no medications. Will be seeing a rheumatologist in July.

Comment from: Brenda, 35-44 Female (Patient) Published: January 14

I was diagnosed with linear scleroderma (morphea) 15 years ago. The onset was sudden, affecting my lower left leg and spreading up and across a portion on my abdomen. My skin thinned, which also destroyed my nerves leading to severe muscle weakness. While my condition was active I was lucky enough to have three children. Following the last child I had 5 years on methotrexate which ended the active phase. I still have a muscle weakness and a thin looking left leg but I live a normal active life, running, skiing, and horse riding. I just can't walk in high heels.

Comment from: Camper, 45-54 Female (Patient) Published: August 17

I have been having horrible heartburn, pain in the center of my chest between my chest bone that won't go away, chest and arms are very sore to the touch, I feel like everything is just stuck in my chest/throat, tiredness and stomach issues.

Comment from: Nikhat Aara, 35-44 Female (Caregiver) Published: March 07

My mother is a patient of systemic scleroderma. She has been suffering with the disease since 1993. Early on the doctors were not able to diagnose the disease. My father took her to all parts of our country (India), but all in vain. In 2008, a doctor diagnosed her disease as systemic scleroderma. She has been going under treatment (pulse therapy, and medications) and minute changes can be observed. I remember the time when my mother used to cry in front of me and my father. I have seen her condition deteriorating. My mother was beautiful with flawless, smooth skin, and thick hair. But gradually all this has deteriorated. Her face has shrunk. She is just bone and skin. She cannot open her jaws fully and she has digestion problems. I remember the time when she had problems just drinking water, because of her contracted esophagus. During winter her condition gets worse. She cannot use water as this causes her fingers to get swollen. The tips of her fingers, toes, elbows, and nose, get swollen and bleed.

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Comment from: wafaa, 19-24 Female (Patient) Published: January 06

I'm 19 years old and I was diagnosed as localized scleroderma last year. I had symptoms three years ago. Now I am so depressed. I have a large spot in my right thigh and small spot in my right leg. There is a new spot in my left leg. I am afraid from developing systemic scleroderma.

Comment from: Megan, 65-74 Female (Patient) Published: March 17

I have been diagnosed with incipient scleroderma. The biggest problem I have is quite annoying Raynauds which means although I live in Spain where the weather is quite warm. I still have to wear gloves also my nose gives me terrible trouble. The bridge of my nose seems to have hardened and I feel as if my nose needs clearing all day and it affects my breathing. Those are my most troublesome problems I also have trigeminal neuralgia which does not help.

Comment from: bonniemare, 35-44 Female (Patient) Published: March 30

I am 39 years of age and was diagnosed with scleroderma about 11 years. ago. It's been tough. 19 surgeries, many hospital stays not to mention ALL the doctors appt.'s. It is in my lungs, pancreas and that darn rash you get on your face that follows down my body. Also I have 2 kids and it breaks my heart that they are watching their mom getting sicker. It seemed to take off full speed. I've been on chemo and all those drugs. Never again will I do that.

Comment from: Mama, 55-64 Female (Patient) Published: January 11

I have been battling with Scleroderma for about 8 years now. I have the systemic which involves the lungs and Esophagus and digestive end of it. I also deal with the Raynaud's. So far the only thing that has helped is the oxygen that has helped the muscular skeletal part of it. I am frustrated as to why the doctors don't just automatically do the stem cell remedy which from my research has delivered excellent results.

Comment from: Donna, 65-74 Female (Caregiver) Published: June 23

My mum was diagnosed with scleroderma over 12 years ago, it has now attacked her lungs and kidneys as well as her throat in conjunction with Reynaud's and various other symptoms. My mum is also diabetic. In relation to scleroderma mum kept going to the doctors in the early stages with constant chest infections, and they kept giving her antibiotics. Mum was finally diagnosed and then volunteered to be part of a research program for this disease. The chemicals that have been pumped through my mum is endless and extremely toxic , she's has had 8 Chemo Therapy treatments, she was on cyclosporine, prednisone and various other drugs not including her diabetic meds.Then they wanted her to go on Methertrexate. The Researchers have now deserted her and she now relies on her lung specialists for everything. I am ashamed at the way the medical Research profession involved with my mums case have treated her, she served their purpose and now nothing.

Comment from: sew1088, 45-54 Female (Patient) Published: April 08

I am 49 years old was diagnosed with Systemic Sclerosis about seven years ago, started with leathery patch on left leg tightness on face arms and hands then went to Reynaud. I am currently doing better however I am still tired most of the time and have muscle and joint pain and having minor lung problems. I am happy to wake up everyday and enjoy my family and life. Please do not feel alone because you're not.

Comment from: Gooser, 65-74 Female (Caregiver) Published: March 30

My wife was diagnosed with scleroderma in 1994. During the last year or so, she has had parts of toes and fingers amputated. Several weeks ago she had the toes on her right foot amputated. Just last week she had the toes on her left foot amputated. Tomorrow, she has her left foot amputated. Not sure what to expect from here on out.

Comment from: Meisha, 25-34 Female (Patient) Published: January 19

When I have a scleroderma flare up, it usually affects my fingers. I develop very hard nodules on the tips of my fingers that are very painful to touch. Sometimes I develop yellow crusty sores on them, and I have to take antibiotics to heal it.

Comment from: geoff, 75 or over Male (Patient) Published: December 10

I have had Scleroderma for about 5 years. It affects my skin, mouth, etc. I now have a swollen ankle that could be thrombosis.

Comment from: curemorphea, 7-12 Female (Caregiver) Published: August 17

My daughter was diagnosed with localized Scleroderma Morphea over 12 months ago. She has a rather large scar on her right thigh. She is currently taking Plaquenil and methotrexate which does seem to be helping, but I am not happy about giving my daughter these toxic drugs. She was also taking prednisone for about three months.

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Comment from: matilda, 55-64 Female (Patient) Published: April 12

Hi, I have scleroderma since I was 6 years old. I am now 60 years old. Nobody knew anything about this illness then, it was quick and devastating. In a few months I took over my right leg and foot, right arm and hand, inside of left arm and thumb, patches over my liver and heart, and then it stopped. I have never taken any medicine. I am a survivor. I live a fun life and try to laugh a lot, I am not rich on the contrary, but it's made me who I am and I feel good about myself … positive thinking!

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