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Morphea + More? My 1st post, age 24 and frustrated...

morphea early systemic scleroderma lichen sclerosis pain fatigue swollen hands

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#1 SunnyBuckeye12

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Posted 18 October 2012 - 09:23 AM

Hello Everyone,

I am 24, from Ohio, and have widespread plaque morphea, the start of linear morphea, lichen sclerosus, and a lot of joint pain and fatigue with hands being swollen frequently. I am a biology and sociology college student and physically active (despite the pain) who currently works in the medical field with aspirations to attend med school. Sorry for the length of this post, but I wanted to give you the full picture of my sclero-journey...

This is my first post in the Sclero Forums despite my diagnosis about a year ago. I have found myself extremely frustrated in the last few days- as I have had so much widespread pain through my body, I feel like I can't do anything myself. I have been feeling this way most days for about 2 years now-which is what prompted me to finally see a doctor. Below is my story and some questions for those of you sharing frustrations who might have some advice and answers. I have widespread morphea, lichen sclerosus, and am wondering if I could be possibly have more?

Since about the age of 7, I had this dark colored spot on the left side of my abdomen. It never bothered me, it was just there seemingly overnight. It's about 3 inches in diameter. I can remember my mom taking me to several doctors who told me it was just a birthmark. Then a few years later, I can remember it starting to itch and burn with bright red on the edges-it started to get bigger. At about age 19, I started to notice a few smaller spots popping up that looked similar to this one-under my armpit areas and along my pants line. After tanning, these spots would become a lot more pronounced (I am very fair skinned) and I decided to get them checked once more. Once again, several doctors assured me they were birthmarks or cafe au lait spots.

Then about 2 years ago while in college, I just started to explode with more spots. The ones that I had started to grow in size, sometimes with pain. Aside from this, I was also battling debilitating fatigue, frequent illness, and widespread pain almost everyday for a year. (Pain so debilitating that simply laying in bed hurt and doing anything was just as bad. I also had bouts of 'creakyness', where my body cracked and made popping noises with any movement-my joints and bones feel rickety and creaky.) I started to not go to class, my grades fell. I felt as if my body was falling apart and there was nothing I could do. I went from being a highly motivated pre-med student to not being able to leave my bed most days and feeling guilty because I just physically could not keep up.

I finally decided to go out on a limb and see a specialist dermatologist, because while all this was going on, I was continuing to get more spots. I finally got my diagnosis of morphea. My doctor did not elaborate and all he said was "you have scleroderma, you can look it up online," and sent me home with a script for prednisone.(which helped with the pain and exhaustion but came with its own horrific side effects.) Needless to say, when I went home, the information I was bombarded with online was scary and horrific because he had not distingushed between local and systemic. I made an appointment with a rhematologist/immunologist at the Cleveland clinic.

The Cleveland Clinic doctor was wonderful and cleared up a lot of misunderstandings for me. My ANA tests came back negative for systemic sclerosis, but I did find that I also had morphea and lichen sclerosus overlap and a vitamin D deficiency so low it was almost untraceable (less than 10); which we decided could be the trigger of my pain. We discussed treatment options because my morphea was in a very active phase and seemed to be going through several phases of reactivation.

-Now-

Although my pain on the whole is a lot better (most days are good days), I still do have very rough days. My vitamin D has come up to an acceptable level after being put on 50,000 units 2x a week for 6 months. My spots have gotten a lot worse. I now can count 4 spots that are larger than 5 inches in diameter. They start from the front of my abdomen and wrap around my side and back, with1 spot which is almost 10 inches wide, as well as 6 that encircle my breasts, and several more along my trunk and opposite side which are also expanding. My spots are indented, hard, and painful. Sometimes they itch but lately the pain in my chest from my spots have been making me feel like I'm having a heart attack.

A few weeks ago I also noticed a discoloration and spotty pattern coming down the backside of my left arm and down my bicep on the right. I am not 100% sure that this is the morphea, but it hasn't gone away and only gotten darker, so I am venturing a guess that it could be linear progression of my spots. My lichen sclerosus (which I have on my body as well as genitals) has also flared and I have been working with my OB/GYN (obstetrician/gynecologist) to treat it. I also have about 7 lipomas inside my abdomen which I can feel under my skin (the doctor told me they are nothing to worry about).

Lately, I have been starting to feel creaky, achy, and in pain a lot more. I have also noticed my hands hurting. They are frequently stiff and swollen and puffy from the finger tips to my wrists. I wake up with them swollen and sometimes they spontaneously do it. I do not have Raynaud's (no color change or response to cold) but I do have some Sjogren's issues (dry mouth, dry eyes). It seems that things are getting worse, despite my creams, steroids, and light therapy. The next step is methotrexate and I am not sure if I can handle it in my last year of school.

Questions

I am wondering if I am 'progressing.' I understand that morphea does not 'turn into' systemic, however I do understand that systemic is variable between people and diagnosis is not cut and dry. I have a couple questions that maybe people can lead an ear to from personal experience or knowing someone else:

Does anyone have both systemic sclero AND morphea? Can they be presented the same time?

What is early systemic like? How does it manifest? At what age and how did you know it was getting worse?

Has anyone else had issues with their hands swelling and hurting randomly? Or widespread pain?

Is it possible to have both Morphea and Linear Scleroderma?

Thanks to everyone for your advice and support! I look forward to hearing from you and browsing the forums. Stay strong and thank you! :D

#2 Joelf

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Posted 18 October 2012 - 11:35 AM

Hi SunnyBuckeye12,

Welcome to these forums!

I'm sorry to hear that you've been through the mill so much with Scleroderma and Morphea, although it's a good thing that you have been able to consult a specialist at the Cleveland clinic.

I've included a general link on our medical pages for you on Morphea; we also have another page Conditions associated with Morphea from which you will see that about 25% of patients develop symptoms outside of just skin involvement. I quote from that page:

"A 2003 large multinational study found that 25% of localized patients had at least one other manifestation, such as osteoarticular, neurological (epilepsy, headache, peripheral neuropathy), ocular, vascular, gastrointestinal (heartburn), respiratory, cardiac, or renal. Less than 4% of the morphea patients had more than two non-cutaneous (non-skin) manifestations, and none of the patients in the study developed systemic scleroderma during the follow-up."

I have systemic Scleroderma which has affected my lungs, but thankfully, my skin involvement is fairly minimal so I can't advise you about morphea from personal experience. However, I do still suffer with painful joints and until I started taking prednisolone my fingers were very swollen and puffy, so I can fully empathise with those symptoms with which you're suffering. Although I had felt poorly for probably eighteen months before it really manifested itself, it wasn't until I started experiencing lung involvement (I presented the classic symptoms of shortage of breath and a dry cough) that I consulted a doctor who fortunately knew her stuff and the rest, as they say, is history!

We have other members who do have Morphea, Linear Scleroderma and also Lichen Sclerosus and I'm sure some of them will be able to give you some first hand information. Amanda has the rare form of bullus morphea and systemic scleroderma and I understand she is in the process of preparing our video guides to morphea, linear and en coup de sabre. We also have two or three current threads on Morphea, (see tags below) which I hope you'll find interesting and informative.

Now you've found our forums and joined our community, please do keep posting and let us know how you are progressing.

Kind regards,

Jo Frowde
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#3 SunnyBuckeye12

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Posted 18 October 2012 - 06:52 PM

Thank you so very much, Jo, for the warm welcome! It is nice to have the support of others who share in this journey. Take care!

#4 Shelley Ensz

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Posted 20 October 2012 - 10:00 AM

Hi Sunny,

Welcome to Sclero Forums! I'm sorry you have scleroderma and lichen sclerosus, but I'm very glad that you've found us.

Your questions are quite complex as they tread on the grey area between localized and systemic scleroderma. Studies show that between 0 to 4% of people with morphea also develop systemic scleroderma. The zero means that even many scleroderma experts have never encountered it in their entire career, because it is that rare. The major tip-off for whether or not morphea also overlaps with systemic is the presence of Anticentromere Antibodies. You may want to get tested for that, to see whether or not you are at risk. Even if you do have that antibody, it doesn't mean that you will "for sure" develop systemic, but it is nevertheless a definite risk factor and if you have it, combined with your symptoms it would indicate that it would be a good idea to see an expert in systemic scleroderma.

That said, I believe Amanda should be piping in here sooner or later. She has both morphea and systemic, but I think she may also lack the anticentromere antibodies, which just goes to show that all rules are made to be broken!

In the meantime, you are going to need to be consulting your expert in localized scleroderma. It is much easier to prevent progression of morphea/linear than it is to treat anything after it has developed. And if you feel you can't tolerate the treatment, then how are you going to tolerate the disease? And yes, morphea and linear hang around together so often that many doctors lump the terminology together. I have often heard from people who actually only have morphea who were told they have morphea/linear.

That said, you really can't just blissfully assume that any new developments are due to scleroderma, either. Any new symptoms you experience must be checked out by a physician. I mean, what if your new arm thing was a creepy-crawly fungal infection that was readily treatable? Not that it would be, but just for example that all of us are tempting fate when we try to be our own doctor.

I'm hoping its a relief for you just to have found us, at long last, so that you have a place to air your concerns and have them looked over from every angle, and so that we can be here for you.

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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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.

#5 KayTee

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Posted 22 October 2012 - 03:02 PM

Hi Sunny:
I have general morphea and limited scleroderma CREST. Looking back the first issue was with Raynaud's and the CREST was diagnosed first (after a couple of years of course - when I was about 56). But I had also noticed discolored patches on my thighs that seemed to do very little except a feeling of burning in the sun or chills at other times. About 2 years ago the skin discolorations and redness moved to my abdomen/trunk. I was lucky enough to find a dermatologist in San Francisco who had extensive links to the scleroderma community and knew exactly what it was and then confirmed it with a biopsy. On any given day the morphea can be problematic with its burning feeling. Plus I have had to go completely with loose soft cotton clothing and wear lots of layers to keep warm.
How sad that you are dealing with this at such a young age. And the doctor's response with look it up online is not unusual. I found many doctors don't want to talk about scleroderma because they either don't know much about it or have no clue how to talk to someone with it.
Warm hugs
Kay Tee

#6 gita shrestha

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Posted 23 October 2012 - 02:43 AM

I had two oval patches. One on my back and other on my abdomen. It neither was painful or any other problem. Then after two years I went to a doctor then he said that it was just bacterial infection and did prescribed some medicine. But it did not change. After some months I noticed that it was growing. On my abdomen there was three instead of one and on my back there were four instead of one. Then I got worried, but this time I changed doctors and she told me that it is morphea and can never be treated however, she also has prescribed me some medicine. Is it true that it can never be treated? Can it be growing more and more? What shall I do now? And how can I be sure that it is morphea if it grows in some other part of my body? Hope to get an answer soon.

#7 Joelf

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Posted 23 October 2012 - 08:50 AM

Hi Gita,

Welcome to these forums!

I'm sorry to hear that you're suffering with Morphea and that the treatment which you've been prescribed hasn't really helped you.

We do recommend that our members consult a Scleroderma specialist/dermatologist who is experienced in dealing with Morphea and although this condition can't actually be cured, there are treatments available.

Now that you've found our forums, please do keep posting!

:emoticons-group-hug:

Kind regards,

Jo Frowde
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#8 Shelley Ensz

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Posted 26 October 2012 - 11:20 AM

Hi Gita,

Welcome to our scleroderma forums! I'm sorry you have morphea but I'm very glad you found us.

As it happens, as Jo pointed out, there are treatments for morphea now. Why don't you print off our page on morphea treatments and take them to your doctor to discuss? It would be nice if you could consult a scleroderma expert but they are admittedly very few and far between for morphea.

For morphea treatments, you'll see here that UVA1 Phototherapy might be a good option for you. If you are unable to find a center nearby that offers it, they also have units now available for use in the home. They are expensive (about a thousand dollars US) but they might be covered by insurance. It is at least worth learning about.

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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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.

#9 Amanda Thorpe

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Posted 28 October 2012 - 04:17 PM

Hello Sunny

Welcome and I have both morphea, bullous morphea (blistering form of the disease) and systemic scleroderma. I have plaques all over my thighs, but they seem to have settled down now but are itchy and tender. I have had scleroderma for 5 years and these plaques on my thighs are a recent addition as it during year 5. Unfortunately the bullous morphea on my calf burst and ulcerated but that's much better now.

Regarding my blood work, my ANA & SCL-70 have always been negative, I don't know about the anticentromere antibodies as in whether I have ever been tested for them and if having negative results with the ANA & SCL-70 means the anticentromere antibodies would also be negative. I have no real interest in blood work, I was told by a doctor that negative ANA & SCL-70 meant I was highly unlikely to develop internal organ involvement but about 2 years later found myself in serious heart failure (2 year life expectancy at that time) because of myocardial fibrosis. Thanks to implantation of a bi ventricular ICD my heart is functioning again which is always a bonus!

Many of us here struggle with pain and fatigue, it's part and parcel of scleroderma and we all have to find our own way of living with it. It's not going away so what choice do we have?

Take care and keep posting.


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#10 Amanda Thorpe

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Posted 28 October 2012 - 04:25 PM

Hello Gita

Welcome to the forums! Morphea is most commonly found on the trunk but can occur anywhere on the body. It’s most common form is a plaque-type affecting only skin, which I have, and begins fading 3-5 years after onset even without treatment but any skin damage caused by the morphea is permanent.

I've never had any real treatment for the morphea other than creams but as I also have systemic scleroderma I tend to overlook it. My plaques are tender and itchy and seem to have stopped growing at present...hooray!

Take care and keep posting. If you do try the UVA-1 phototherapy, let us know how it goes.
Amanda Thorpe
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#11 SunnyBuckeye12

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Posted 25 November 2012 - 10:37 PM

Thank you all! You have all been an inspiration and a huge bank of knowledge. Sorry I have been missing in action for a while, just really busy lately. Thank you so much!

#12 Margaret

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Posted 26 November 2012 - 05:23 AM

Hi SunnyBuckeye and Gita ,

Welcome to the group. I joined in November 2006 because of my son, who is now 24 years old. He started with the + ANA, + anti-RNA Polymerase 1/111, esophageal dysmotilty, chostrochondritis, 20 pound weight loss, low Vitamin D level, extreme fatigue and autoimmune induced depression. His main complaint was that his esophagus wasn't pushing food down. He did not have Raynaud's or skin issues at the time. He has since developed Raynaud's, dry eyes, and Addison's disease, but still, no skin issues. He's been on Plaquenil since June of 2007 and that helped to ease the esophageal problems. He's also on an SSRI for the depression.

Sunny.....your one sentence caught my eye....chest pain that feels like a heart attack. I am not a doctor, but from my son's experience, I can tell you that he had symptoms of esophageal spasms that are very painful and feel like a heart attack. Under the tongue meds for heart attacks are used for esophageal spasms, too. I'd suggest a trip to a Gastrologist just to rule out any gastric issues. Also, stress plays a HUGE part in this disease......and, you are under a lot of stress!!! A psych. doctor told me that the same autoimmune process that attacks the body, also may attack the brain/chemicals. PLEASE....don't be embarrassed to see a psych. doctor if you get so depressed. My son had a horrible senior year due to this disease but managed to eke out 2 years at college. Stick to your dream of medical school.....just realize that it may be harder than most kids. Don't be afraid to open up to professors/doctors, too. They may be able to help in ways you're not aware of.

Take care, Everyone.
Margaret

#13 SunnyBuckeye12

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Posted 29 November 2012 - 07:52 PM

Margaret,

Thank you for your kind words! Its funny that you mention that because I was actually considering seeing a therapist to deal with my scleroderma spreading. I don't have very much family support unfortunately (I think it scares them). I also had very low Vitamin D and for a while was very depressed. Nearly all of my depression has lifted since going on vitamin D, but the stress is a different story! I have been getting better at managing it, but I have noticed it wearing down on me. The worst thing about this condition, I would have to say is feeling so isolated at times; friends and coworkers just don't understand when you are too run down to do the simplest things or when pain decides to strike.

#14 Shelley Ensz

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Posted 30 November 2012 - 10:30 AM

Hi SunnyBuckeye,

None of us can ever get too get at managing stress, can we? I'm sorry you feel isolated at times. Counseling could certainly help you cope better with everything, and in my opinion, the time we should start counseling is when the idea first enters our mind. It's not something to put off because ignoring a situation does not make it go away. Personally, I have never yet had any counseling that I found to be worthless and a lot that I found to be absolutely priceless, including self-help groups.

I was bedridden and mostly confined to a wheelchair for a year. During that time I had to actively tackle the issue of isolation as I had extremely severe fatigue. I made a point of calling someone (anyone) every day. I invited friends to pick up take out food, or even just coffee, and bring it over so we could chat a spell, or play a board game. If I couldn't get out of bed, I'd just have them pull up a chair beside it. If I could make it to the dining table, it was beyond fabulous in my book!

I would spend the day gradually getting dressed. Then each evening, my husband would toss me in a wheelchair and take me to the local mall. I bought a red sweatshirt and then funny broaches to pin on it, so that people found me more approachable and had something to talk about (commenting on my funny pins instead of asking why I was in a wheelchair). My husband would often just read a book to me while I rested; whether or not I grasped it was beside the point, because we were together.

I found during that time that it was very important to focus only on what I *could* do in any given moment, and make the very best of it, rather than to lament what I could not do. I mentally prepared my friends and family members with plans A B C, etc. when we wanted to do something together. Plan A might be a movie, plan B might be renting a movie and so on. Usually, most of us, even if we are terribly sick, can muster up some sort of energy to do something, and doing something -- anything -- is a good way to handle fatigue and to help thwart pain. If we do nothing, then we tend to just ruminate about fatigue and pain and how crummy everything is, and it is downhill all the way from there, which is why I believe in the power of anything, unless we are sleeping.

I must say, none of my friends or family necessarily understood my illness, but that was okay with me. Most days, I don't understand it myself. All they needed to understand was that for whatever reason, I often lack all the energy I used to have but I still love them and want to spend some time with them. It is an enormous challenge to learn how to socialize when our plans can be stymied or stopped by pain or fatigue. Being bolstered by good counseling can help us see the possibilities, instead of the obstacles, and help us turn these difficult circumstances around.

You go for it, if you still want, and we'll be here beside you, all the way!

:emoticons-group-hug:
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.

#15 SunnyBuckeye12

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Posted 14 January 2013 - 03:29 PM

You all have been wonderful

Update:

I have started methotrexate therapy to stop the progression of my morphea and LS. It has spread down my arms and forearms and abdomen in less than a month. I am feeling less chronic pain overall (despite the days the MTX puts me out) so I am hoping this will nip it in the bud!

Thanks again!
Buckeye

#16 Amanda Thorpe

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Posted 18 January 2013 - 05:45 AM

I need to update any of my morphea/localised scleroderma post that state:

"any skin damage caused by the morphea is permanent"

to read that

"Currently, UVA1 phototherapy is widely recommended as a first-line treatment for morphea, and it is also used for treating well-established morphea."

With the intervention of UVA-1 phototherapy the plaques are not necessarily permanent. It's good to know that in the world of scleroderma things do actually change, that there can be improvements! I'd be interested to hear from anyone who has had this therapy, how well did it work and if you happen to be in the UK, where did you go to have the treatment?

Take care.
Amanda Thorpe
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Also tagged with one or more of these keywords: morphea, early systemic scleroderma, lichen sclerosis, pain, fatigue, swollen hands