I am a thirty-five year old mum of three and my problems started in 2004. My hands began to swell and my fingers and they were so painful but I had no other symptoms. I made visit after visit to my general practitioner (GP), who just kept saying they had no idea what was causing it.
It was really frustrating as I was struggling to use my hands. I could no longer do things like brush my little girl's hair for school and fasten zips and buttons. I was prescribed pain killers and wrist supports to wear all day to try to stop the swelling. I hasten to say they didn't work.
I had numerous tests done and they all came back negative except for one test which was to do with my immune system which two of the levels were virtually nonexistent. To get the blood tests took about eighteen months and a million visits to my GP.
Then other symptoms started showing and I was diagnosed with fibromyalgia. That was just of a physical examination and it was left at that and I was sent away.
It was only when my mother went onto the internet looking at illnesses that had all the symptoms that I was showing that we found Raynaud's and scleroderma. We made another visit to my GP and asked her what she thought. She said I didn't have Raynaud's and would do some blood tests for scleroderma. I came out of there feeling like a fraud, only how could I be a fraud when you can actually see the symptoms? I can remember saying to my mum one time that I must be an alien, why do the doctors not know what is wrong with me?
Finally it was 2007 when the results came back that I had scleroderma. I was told there is nothing they can do for it except give me pain killers and keep an eye on things. It was about six months later heading into winter and I was having really bad reflux and was at the doctors and when she saw my hands she said, "Oh, can I look at your hands, please?" So I showed her and she said, "Oh dear, you have Raynaud's," and started me on medication right away for it.
Symptoms have progressed. Some come and go and I have a break between them and others are there all the time. I am constantly in pain and my hands are constantly swollen and tight and am unable to make a fist anymore. These symptoms never seem to give me a break. But most of the others "flare up" as I say.
I have also had asthma since I was sixteen years old and over the last few years my breathing complications became really bad so my chest specialist thought that I had a condition called bronchiectasis and did a MRI scan to detect it. This came back clear of bronchiectasis but he said we did find pulmonary fibrosis on the scan. "Oh great," I said, "Another one to add to the collection."
It took me years to get diagnosed and I know this can isolate you so much because you just feel you need to know what is wrong with you so you can deal with it.
I did not know until I found this site that there were specialists in scleroderma so my daughter and mum have put a letter together and sent it to our nearest one which is a twenty minute drive away.
As you see with every added symptom that has arisen another medication has been added to the list and I am now taking twenty-five different meds a day. Hopefully they can get cut down by the specialist.
I never have a symptom-free day but now I just take each day as it comes. You see I am of the opinion now that no matter what the name of your illness, you just have to deal with it each day at a time and hour by hour. Some days when I can hardly do anything, well that's the way it is, whereas before I was getting myself very depressed not being able to get rid of symptoms. Instead of focusing my energy on that, now I focus on the positive things I can do, when I can do them.
Scleroderma is a long journey and there is no getting away from it so my best advice is to go with it on bad days and on good days enjoy what you can when you can!
Story edited 01-21-2011 SLE
Story posted 01-21-2011 SLE
Story Artist: Shelley Ensz
Difficult Diagnosis Stories
Heartburn (Reflux) Stories
Pulmonary Fibrosis Stories
Medical: Diseases and Symptoms
Scleroderma Experts (Worldwide)
Symptoms of Systemic Scleroderma
Types of Scleroderma
What is Scleroderma?
SCLERO.ORG is the world leader for trustworthy research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team, or Volunteer. Donations may also be mailed to: