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razz

Scleroderma Causes

66 posts in this topic

I know there are many theories on what causes or triggers scleroderma. I was wondering, looking back around the time you started developing symptoms of scleroderma, what event(s) was going on in your life?

 

Me, personally. I was diagnosed within 4 months of noticing the numbing in my finger tips. I worked the night shift (12:00 a.m. to 8:00 a.m.). My job was stressful (police officer). I was a single mother. I had just purchased a home that needed work. I (unknowingly) used industrial paint to paint the interior and the fumes were strong. That same week the carpeting was installed, again the fumes were strong. I think this combination of stress and chemicals brought on my condition. My grandmother also had rheumatoid arthritis.

 

What do you think?

 

Razz

:unsure:


Live well, Laugh often, Love much

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I think stress also brought on my sclero. My husband was having heart surgery at the same time that my step father was dying and my mother-in-law was losing her will to live. Shortly after all this I was diagnosed with fibro. Then, about seven years later my husband had a major heart attack and another surgery, then 6 months later my oldest daughter died from a doctors neglect. I then had a minor heart attack 2 weeks after her funeral. I think my symptoms started with the fibro then ecslated with the other events. I was diagnosed 3 years after my heart attack. I had stomach troubles for 3 years before I got properly diagnosed and treated.

 

Sherion

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It was the stress. I was divorced raising the two boys alone. I too, had just purchased a home. My mother with whom I had had a turbulent relationship at best, had just past away. My ex husband had literally walked out of the boys lives yet, continually harassed me. The stress was unbelievable We had our own business and after divorce I had to look for work if I was to raise the boys on my own. I took a secretarial job close to home and on the first day I felt my heart being torn out of my chest in having to be away from the boys as they waited in "after care". I had a very controlling woman boss who told me I must do the best I can and added "who else is going to hire a woman with two children".

 

Razz it's funny you mention the paint and carpet fumes. I refinished furniture and antiques as a hobby and constantly had my hands in chemicals and paint strippers, not to mention the fumes.

 

All in all, I think the predisposition was laid years ago at the shore. The mosquito spraying truck came every night, and as stupid as it seems now, our parents used to tell us to get in the fog/mist so we would be protected from bites for the evening. :(


Tru

 

It is what it is...........

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Think it was stress that triggered it for me as well.It started at the end of the most stressful three years of my life.

Lizzie

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I think it was was stress that triggered it for me after having a number of major things happen in my life - Moved house, sale of old house fell through so had to rent it out, started a new job in a challenging school, fell & badly smashed my wrist, developed Reflex Sympathetic Dystrohy & had 2 terms off work, Father-in-law died and went back to work, mother-in-law had a stroke, eventually diagnosed with Fybromyalgia and then the SSc. So like Lizzie I'd had 3 years of almost continual stress.

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I've heard so many stories -

 

I had a Lyme infection that I ignored for a long time and also tend to be sensitive to certain medications and foods. In general, I've always heard stress, heat and possibly viruses are the most common trigger for autoimmune diseases.

 

-RTS

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Jensue, Lizzie, Truman and Sheriod,

 

I, too, am convinced the groundwork was laid out. I try and warn my family, esp. one brother and sister, who tend to overwork themselves that stress does affect our physical health. I feel for your losses and struggles. You are all amazing and I truly admire your courage and strength. Thanks for helping me understand this illness.

 

 

 

Razz


Live well, Laugh often, Love much

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The most obvious parts of my scleroderma only started about a year ago ... the Raynaud's was diagnosed about 7 years ago and in hindsight, I also think I was having a flare up on my scalp as well at the time. I had some dry, itchy patches on the skin above my ears and had some hair loss as well. My general practitioner at the time told me to use Denorexx or something thinking it was a dandruff/scalp issue. I started using organic shampoo unstead because I hated the way the dandruff shampoo smelled. Either the organic shampoo worked or the flare up just went away on it's own. Fast forward 6 years and despite a few hiccups with the Raynaud's, nothing major happened in my life until 2 years ago... I went through a horrible break up, had to find a new home, a new job and new friends. It took about a year to get all that under control and then "BOOM" ... the skin in my hands and arms started going ballistic on me. 3 mos later I was diagnosed with diffuse scleroderma. ALSO, (and I've been told this CAN'T have anything to do with it but I still wonder) last summer right before the "ballistic" phase, I started taking Chantix to quit smoking. It was a miracle drug! I had very little trouble tapering off, little by little, until I was going few days at a time without smoking a single cigarette. Then school started and I stopped taking the medication and I was right back up to where I was before taking the medication two weeks into school :o( I knew something was wrong with my hands and arms right about the same time...could just be coincidental but you just never know what OTHER side effects some of the newer drugs may have until YEARS into their use. For all I know the Chantix may have triggered something OR it could just very well be that having the most stressful year of my life prior to that, finally caught up with me ... rationally I would say it was the stress ...

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Sherion, sorry about the misspelling. You have really gone thru a lot. Your tenacity and endurance is phenomenal!

 

RTS, I also heard that viruses could trigger SD.

 

Thanks for your responses.

Razz


Live well, Laugh often, Love much

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I had a bad cold or something, during that cold, whenever I inhaled to cough I would get this vibration in my chest, felt like someone held a pager against my chest, & after the cold went away, I have had all this popping in the exact same spot ever since. I think this was also during the time that we had a few deaths in the family with in a few months of eachother as well & it was about 18 months after having a baby. But 3 months after the cold, I started experiencing an intolerance for hot or cold, night sweats, Raynaud's, myalgia's, arthralgias, heart palpitations, period changed, muscle spasms everywhere, needing naps, swallowing difficulty, in the spring (6 months after the cold) the swollen hands every morning started & edema everywhere (face, legs, back included) & 1 year after onset of Raynaud's, my skin started to feel tighter just over my knuckles on my hands. ...The myalgias & arthralgias got almost completely better after about 10 months of NSAIDS & I haven't had near the problem with them ever since, but everything else has gotten worse. I've only recently been experiencing more arthralgias.

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Razz,
I now have a whole list of things that probably acted as trigger: hormones, genetics, silica, toxins, solvents. And those of just the things that I could identify. There are SO many possible causes and triggers, that I would think it would be hard to narrow it down to just one. You'll see what I mean if you click on this link: Causes of Scleroderma. You'll see that there are TONS of things going on, so pinpointing a definitive causes, would be difficult.

Sure is something we'd all like to know however. Of course it's probably what contributes to the difficulty in diagnosis and finding a cure. If you don't know what causes it, how do you cure it? UGH!

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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After typing my reply over about 4 times, I'm going to simplify it by saying I do beleive stress/trauma is involved. There probably is a pre-disposition in there as well but definitely I feel in my case trauma was involved.

 

Karen

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I had a tramatic slip and fall accident and then a month later I had flood of systems start up and just got continuously worse over the year. I was then diagnosis with Scleroderma and not just Raynaud's.


Take care and stay warm,

 

Michelle

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Hi all

 

I was deathly ill many years ago and hospitalized for about 1 week and they could never figure out what was wrong with me other than I was one sick girl. Shortly after that I started getting the constant fevers and sore throats, etc.....I think it might have been the trigger but I am not certain. Those symptoms stayed with me for several years then fizzled out to be only occasional (yes, I believe I was lucky there). Then a couple of years ago, things started creeping back in. The rheumatologist way back then said I had more than FM going on...now I guess we know what it was although I did not have enough symptoms to diagnose anything at that time. I go to see my new specialist on Wednesday...I plan on asking if that could have been it?


Sending good wishes your way!

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Razz, Don't worry about mispelling my name. With a name like mine I'm used to it being spelled and mispronounced. It's happened all my life. LOL

 

Sherion

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I broke out with morphea after a very long stressful period in my life but one thing that always sticks out in my mind is my morphea actually popped out 3 weeks after starting chantix. Im not sure if that is coincidence either. Many people have really good luck with that med. but I stopped taking it right away thinking it was some alergic reaction. Sharon

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I find all of these stories fascinating. 1987 was a terrible year for me and my husband - people kept asking us how we were still standing. I lost my beloved grandfather, we had a sewage spill in the entire downstairs (den, office laundry room and basement) of our house, I had a miiscarriage, my son had pneumonia twice (he was 3) he had to be checked for cystic fibrosis, I had pneumonia twice, and I was involved in a car accident that triggered fibromyalgia.

Subsequent to 1987, my son who was a very difficult child from birth just continued to develop more issues. My husband and I worked very hard to deal with his issues - pychologists, meds, behavioral mod, the schools, boarding schools, psychiatrists. We were stressed all of the time. Our lives were beseiged daily. Ever since then I have suffered with the fibro and developed Raynaud's. In about 1997 the Raynaud's became very obvious. My gastro issues were in existence from the time of my son's birth. I had a second child in 1989 and with the fibro and other physical issues my life was very complicated and pressured. We wanted to protect our daughter from our sons issues and have her lead as normal a life as possible and at the same time give our son as much attention and love as he needed. My husband and I did not feel that we had any control over our home or work lives. We just we putting out fires daily.

I finally got around to showing my doctor my hands in 1997 and he took a blood test and my ANA was high with florescing centromeres. Between the Raynaud's, the gastro stuff and some spidery stuff on my face, coupled with the ANA I was confirmed with CREST.

Was it caused by my pregnancy? My trauma of the accident and then all of the stress? I was the infantry and often did not even tell my husband soe of the stuff going on with my son in the beginning because he was 40 minutes away at work and I was home. I started doing it as he got older and as the issues got more complicated. Not everyone with difficult kids who is in a car accident gets CREST - I believe that you have to be predisposed or your system has to be run down eough for the disease to find the conditions opportune to wreak havoc. So what do we do to protect ourselves so that this doesn't happen? It may be too late for a cure for us, but that is the question I would like answered so that perhaps I can stop the progression and maybe prevent others from suffering.


Smurfette

 

Chocolate, It isn't just for breakfast anymore!

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This is an interesting thread! And we have tons more information on possible causes of scleroderma (pages and pages of it!) on the main site, Causes of Scleroderma. Topics covered there include -- in part --

 

What Causes Scleroderma?

Advanced Glycation Endproducts

Autoimmunity

--Autophagy

--Cells and T Cells

Cluster Studies (Main Page)

--Cluster in South Boston

Cytokines

Dendritic Cells

Drugs and Medications

Endothelin

Environmental (Main Page)

--Artificial Joints & Breast Implants

--Drugs and Medications

--Infections

--Mercury (Dental Amalgam)

--Radiation

--Silica Exposure

--Solvents

--Vinyl Chloride

Fetal Cells

Genetics

Gluten Sensitivity

Homocysteine, MTHFR C677T Gene

Hormones and Chromosomes

Interleukins

Molecular Defect

Natural Killer Cells

Neuropeptides and Substance P

Oxidative Stress, Lipid Peroxidation Proteins

Serum TIMP-2

Sleep Disorders

Stress

Tissue Kallikrein

Thyroid

Vascular

Vitamin D Deficiency


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Thanks everyone for your responses. It's interesting how the one common denominator here is stress, something we can't always control. Thanks Shelley for the list and Janey for the link. I also have a book that lists all the different autoimmune diseases and the possible causes and triggers, of which there are so many. Taking into account we all have different lifestyles, then the triggering factor would be different for everyone. Which leads me to question does everyone have the potential to develop an autoimmune disease? Or, are only certain people predisposed to the manifestation of an autoimmune disease?

 

I guess this is something I think about and hopefully in the future they'll develop a drug to reverse the activation or a preventive immunization for those who are predisposed.

 

 

 

Razz

 

 

Smurfette,

 

You've been thru so much. I can somewhat relate withu. My eldest was always a difficult child since birth. I love her dearly but what I thought was temporary childhood behaviour evolved into a difficult adult. I was always trying to help her out. She's moved out and taken complete responsibility for herself. I've regained some of my sanity back! :blink:


Live well, Laugh often, Love much

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Razz,

Thanks for your response. I am glad to hear about your daughter. I hope that it enables you to be less stressed and to recover and perhaps your disease will slow down and not progress at all. Maybe with a reduction of stress you can even go into complete remission. Reclaim your life a bit and start to do things you used to enjoy.

Your daughter's story gives me hope. My son lives in a condo we bought and hopes to graduate college next May and go to law school in the fall of that same year. He has cleaned up his act quite a bit, but he is still needy. My husband and I feel that kids today just grow up and become independent so much later than we did. I think that because of that we as parents are stressed more because we are called on to do more - we are squeezed more. We boomers are the sandwich generation - we have parents who are aging and require attention (although my husband and mine are still doing ok for the most part) and children who requie a lot of attention. That creates a lot of demands and stresses. That pushes the autoimmune button and for us I truly believe it triggered the disease.

Your little note made my day (night) thank you


Smurfette

 

Chocolate, It isn't just for breakfast anymore!

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Yes it was stress for me too - I was 22 and had just left home for the first time, had moved to London and was struggling with homesickness. That's when the first symptoms appeared. I think stress has a huge effect on the appearance of symptoms but who can go through life without any stress?!

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Smurfette,

 

I like your comparison of babyboomers being the sandwich generation. That's a great analogy but so true!

 

This past year has been the most peaceful than I can't even remember! Right now my disease is stable and under control. I'm glad you feel better too!

 

 

:lol:

Razz


Live well, Laugh often, Love much

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Hi, like Jensue I got RSD (Reflex Sympathetic Dystrophy) first. I wasn't under any stress, I had a blood test and the needle hit the median nerve and caused the RSD. I had that for a few months then noticed everything starting to feel tight, muscles. tendons and skin. Blood test came back positive for systemic sclero. All the doctors said it was the RSD that brought on the sclero. Hugs, georgette

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Razz:

 

Sandwiched is the right analogy. I so wanted more for my sons then I had gotten, that's where the mistake began. We strive, struggle and fight without asking why. That's from wanting for not being given everything. Okay, our kids won't have to suffer that, so we give all. Mistake; now they don't know what is to work for, earn and learn respect. What is the happy medium? I don't know. Just didn't want my kids to go through all the hard times like me...mistake.....

 

 

'


Tru

 

It is what it is...........

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Truman, I agree we don't want our children to experience perhaps what we went thru, so we do so much for them. They then believe this is the norm. If they only walked in our shoes. When my 2 daughters were in their mid-teens I nearly pulled all my hair out! :blink: Now, my youngest is the total opposite, doesn't need anything from me, not money or things. This isn't to say that she won't refuse a gift. She even helps me around the house. Things do balance out somehow. I just hope the best for both of them. We're moms for life!

 

Catherinechaos, Stress is a part of life, isn't it? I guess the secret is to find ways to either reduce, eliminate, change or accept it. Some things we cannot change. Some things we can. Like I divorced my ex back in '87 and a huge weight was lifted. :blink:

 

Georgette, That's interesting that in the mist of a blood test a misguided needle would open the door to RSD followed by scleroderma. I hope you're doing better now! Hugs back to you! :)

 

 

Razz


Live well, Laugh often, Love much

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