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  1. Good morning, I was diagnosed at the age of 9 with Scleroderma/morphea with patches on both sides of my neck and below the neck on my collar bone. The spot on my collar bone was very thick and had a scar tissue appearance. A biopsy confirmed the diagnosis and I was treated with cortisone tape and Vitamin E for maybe 7 years. After a few years of using the cortisone tape, the front spot thinned out completely and remained a discolored mark on the skin. I am now 55 years old. For the past few years I had a small lump where the biopsy was done and it hurt when I touched it. My dermatologist removed it and I believe that it was a pre basal cell. My question is, should I be routinely following up regarding my scleroderma/morphea with anyone? Over the years when I have mentioned it to my primary care physician or dermatologist and they have said nothing. I definitely have some arthritis in some fingers, jaw, back, but always attributed to age. Could any of this be related to the scleroderma? Thanks much, Anne H
  2. ejtauri

    Pansclerotic Morphea

    Hi all, I was just diagnosed by the Mayo Clinic with an extremely rare disease called Pansclerotic Morphea. I just confirmed how rare it is by searching this blog and only came up with one thread. If it was anywhere you would think it would be here. Anyway, the recommended treatment right now is with Prednisone, CellCept, and UVA1 photo therapy. I'm in the process of acquiring a home light unit, but in the meantime I'm considering treatment at a University hospital down in Dallas (UTSouthwestern). Does anyone know of any UVA1 treatment facilities closer to Tulsa, OK? I can't seem to find any by Google searches. Thanks! Eric
  3. Amberd521

    Morphea and Lupus?

    Hi! I’m Amber 33 and new to the forum. My symptoms started with numbness and tingling in my hands and arms along with extreme stiffness and weakness in my hands. My doctors thought it was carpal tunnel but it didn’t make sense seeing how I had been a stay at home mom for ten years prior. Afterwards, my hands began to swell, my hip started becoming sore, I had this strange bruise type rash that wouldn’t go away down my leg, and my shoulders began keeping me up at night. My mother passed with leukemia around this time and things got even worse. My neck would pain me constantly and felt as though I couldn’t turn it. Like I had a constant crick in my neck. The rash also spread down to my calf and I began feeling a dip in my back side near the rash. My doctor sent me to a dermatologist and a rheumatologist. The dermatologist did a biopsy that came back as morphea or scleroderma. The rheumatologist told me that he thought it was morphea and an unspecified autoimmune. My ANA came back positive as well. He said I leaned more towards lupus then anything, but still didn’t hit some of the main characteristics of the disease. At first he put me on vitamin D and plaquenil but after a couple of months it had only gotten worse. He then decided to add methotrexate but also gave me a 6 week supply of prednisone that made every pain go away. It didn’t take away all of the swelling in my hands but I felt great. I had been given it once before for an upper respiratory infection and knew it would help and now that it has ended, I’m really not sure if the methotrexate has helped or if it’s just taken some time to slowly return since I discontinued the steroids. It’s been about three months since I quit the steroids and it’s just slowly gotten worse. The doctor seemed to think the methotrexate was helping, but that I needed to up the dose from 6 pills a week to 8. Then I received a call from them the next day saying my liver enzymes were elevated and that I needed to stay at 6 until my next visit in three months. I guess I’m just really looking for some advice on what to expect. Or to maybe find someone who has had a similar journey. I’m curious why they didn’t want me to lower my dosage if my liver enzymes were elevated. I don’t understand why he ruled out systemic scleroderma - not that I was hoping for that diagnosis by no means, but it seems possible. If I have to be taken off the methotrexate, what’s my next option? He said morphea can cause fat atrophy and he thinks that’s what's happened on my back side. Will that get worse? Why in this world are steroids so bad if they make you feel so good?! I’ve been dealing with this for about a year and a half now and I don’t really feel like I’ve made any great progress. Any advice would be very much appreciated.
  4. Skin mapping for the classification of generalized morphea. Symmetric and isomorphic subsets possess distinctive demographic and clinical features, suggesting they more accurately define the phenotype of generalized morphea. PubMed, J Am Acad Dermatol, 2018 Feb;78(2):351-357. (Also see Morphea) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  5. Hi everyone, I'm new here and after beginning the process of diagnosis am hopeful for some advice. I visited my dermatologist after noticing a reddish lesion on the small of my back. As best I can tell it had been there for about 4-5 months tripling in size from a start about the size of a quarter. The dermatologist saw it and immediately said, that's a morphea -- which at the time meant nothing to me. He did a two-punch biopsy and the results have come back as "features consistent with morphea". At the time of the biopsy, I didn't know what morphea was, so I didn't ask questions. When I returned for the biopsy results, I was armed with more information. I told my dermatologist I had concerns about diffuse scleroderma because I also had developed bad bloating, gas, some reflux and a lessening appetite as well as my arms & hands falling asleep at night with some regularity. He dismissed me and said if I was concerned I could talk to my general practitioner about "systemic scleroderma, which you don't have." I was somewhat stunned by his response -- especially since everything I have read says that GI & circulation issues aren't directly related to morphea. Am I missing something? Thanks!
  6. debyjoyz

    Specialist in Morphea

    Hi everyone, I am new to this forum and I'm so thankful that I found this website. I was diagnosed with morphea 10 years ago. I have seen 5 doctors (Dermatologist) and none of them were able to help me. I know that there is no cure for my condition but I am hopeful that the progression will somehow stop. I have a patch on my left cheek which started 10 years ago and now it is getting worse. A year ago, I noticed another patch on my neck. Does anyone know a good doctor in Sydney who specialise in Morphea? I tried searching on the internet and most doctors are only specialised in Skin Cancer and Psoriasis.... I am hoping to finally see a good doctor who can understand my condition. My disease has been impacting my whole life for a while. It is causing me depression and loneliness... Thank you. Debbie
  7. Hello, I was diagnosed with localized morphea in 2014. I was initially diagnosed by a dermatologist, and given a topical steroid cream. She did not seem the least bit concerned, not taking any photos or scheduling follow up appointments. Knowing nothing about the disease, I simply mirrored the same low-level of concern. Two years passed and my condition worsened. Lesions spread all down my thigh, my calve, and wrapping around to the backside of my leg. Growing concerned, I decided to see a dermatology specialist in Philadelphia. I told her about the progression, showing pictures I documented on my own. I also explained I was having extreme muscle spasms in my leg in which I have the lesions. My doctor said there is no link between the two. She prescribed me plaquenil, to which we learned after 3 months of taking the drug, my body was not responding. At that point we decided to try methotrexate. I had a hard time with the drug, and requested to be taken off of it my next visit. I work in the pharmaceutical industry, so I completely understand the necessity for pharmaceuticals. When I asked to be taken off of the drug, my doctor was flabbergasted. She explained that we finally found something that worked -- why would I want to be taken off and back track? My concern is that we are not getting to the root of the problem. I don't want the lesions to simply stop spreading, I want to understand how it's happening. Furthermore, I am very familiar with methotrexate from working in the pharmaceutical industry, and the aggressive nature of the drug that has potential to cause liver damage. I am 25 and concerned. My leg spasms are at its worst, at some points so aggressive that they are awaking me from deep sleep. I feel alienated by my doctor. I have thrown around the idea of seeing a younger rheumatologist that may be more open to exploring other treatments. Additionally, I am interested in participating in clinical trials. Does anyone know how I would go about that? Thank you for your support and knowledge on this subject. Kara
  8. Hi everyone! I recently discovered this forum and have spent some time looking through all of the posts. Really great to see the support amongst everyone. With that being said, I have a few concerns about my condition and was hoping some one might be able to share some insights. I have a severely dark indented scar on the left side of my forehead (it has developed over a few years). I saw a dermatologist last year who diagnosed it as Linear Morphea and prescribed me ProTopic (Tacrolimus 0.1%) and have been using daily for about 6 months. I was wondering if anyone has had this same condition (whether it be on the forehead or another part of the body) and has experience using Tacrolimus 0.1%. How did the treatment go and what kind of results did you see? I have never met anyone who has had anything remotely close to what I have and I was hoping someone with a similar experience might see this. All the best! J
  9. Morphoea with prominent plasma cell endoneuritis. We report two cases of morphoea that histologically showed plasma cell endoneuritis associated with subtle dermal sclerosis. PubMed, Clin Exp Dermatol, 01/04/2017. (Also see Morphea) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  10. Emilythejester

    Young and new to morphea

    Hi I'm 17 and I was recently diagnosed with morphea. So far I obviously have a mark on skin and I'm also experiencing fatigue, joint pain and eye strain. I'm just wondering what tips anyone has on working through it and what I have to expect. Thanks !
  11. Hi! My name is Kristyn and I have recently been diagnosed with Morphea. Initially, the giant bruise like marks on my side were diagnosed as hyperpigmentation. It wasn't until recently, when another bruise like mark developed and stayed, that I went to another dermatologist and consequently received the diagnosis. My dermatologist is good, but he is busier than any doctor I have ever seen - I felt like my questions and possible pertaining symptoms were pushed aside because there was almost nowhere to sit outside in the waiting room that day. I was wondering if somebody more experienced can answer my questions I have about Morphea and my strange symptoms that I believe may be related. For three years I have itched at night, randomly. No rash, no bumps, no visible evidence of itching, but it would truly keep me up all night. It happened after I got super sick with bronchitis and never went away. My general practitioner performed so many tests (CT scans, blood work, etc.) and found nothing. They chalked it up as stress... But the only thing that was stressing me out is that I couldn't sleep because of the itching! Ever since then I have learned to live with it, even though it still happens occasionally. My Morphea is present on my upper left rib cage. I have a "burnt out" lesion (?) and an active one - both are very large. Sometimes I get pain right in the active spot. It is especially noticeable on some days (like right now). It aches, and I notice that that area of my ribcage is thicker/more swollen than the other side... Not by a insanely noticeable amount, but it's evident. Additionally, last year I started having pain in my left leg (the side where my Morphea is present). My general practitioner said it was sciatic nerve pain and ordered a plethora of tests - all coming up to show nothing, again. I'm almost embarrassed at this point to go back to my general practitioner because I am afraid that I look like I am making stuff up, haha. I wish I was! Has anyone else experienced these symptoms? Given your knowledge of this condition, do you think they could be related to Morphea? My dermatologist somewhat dismissed my questions and said it just effects the skin, that's all. I remarked about pain and he said "no, there is no pain with this" before sending me off with a prescription for steroid cream. I can't help but feel like he might be wrong, though. I am in my early 20s and I am college student. I am in some sort of discomfort almost everyday and it is kind of depressing me - I feel like I am in my late 70s some days! This should be the prime of my life and I am trying to get answers so I can get back to normal. Sorry for the novel! Thank you for any help in advance! I truly appreciate it.
  12. nickisboi25

    Morphea...please help!

    Hi guys and girls! I'm a young man who has had Morphea since I was about 9 or 10. Compared to some people I have it pretty mild, a few patches on the right side of my stomach just under my chest and two small patches below my right arm. But...I'll be honest, I absolutely hate it! It's totally ruined my self esteem and I have no confidence whatsoever. It sounds shallow but I think I'm an alright looking guy with a lot of potential but Morphea just totally ruins me. When I look in the mirror I feel depressed and all I see are the ugly marks. I'd love to be able to go swimming like I used to, go on holiday and not have a borderline panic attack at the thought of showing my body on the beach and look in the mirror without feeling disgusted. I wanna start going to the gym to get a better body and get fitter but I don't know if I can handle people seeing my skin when I get changed. And relationships...forget it! Having sex with your clothes on is no fun so I just don't bother anymore. Some of the words I use might sound harsh but if I can't be honest here with people who ACTUALLY understand what it's like living with Morphea, then where can I? I know a big part of the way I feel is down to me and not the Morphea but everyday just feels like a battle for acceptance. I didn't ask for any of this and all I want is to have normal, healthy, beautiful skin like practically everyone else. To know that I'll never have that is so upsetting most times I just break down and cry. I absolutely hate Morphea and feel like I'm cursed to have it. I don't even know why I'm posting this or what I'm hoping to gain from it. Maybe someone to help me see the bigger picture. Please don't think I'm superficial or vapid, I'm just being honest about how I really feel...
  13. ray

    New Member

    Hello All I was diagnosed with Morphea in about 2013. Spent many years going back to the doctors saying something was wrong and eventually got diagnosed after having a mole removed from a dermatologist. Have patches on my back, front, legs and now sides of face but they don't really bother me, I get periods of cramp in my legs and lately aches in my arms and elbows. Have seen a specialist at Southend Hospital who is really caring and I have been referred to The Royal Free in London which I am dreading, hate travelling to London but hey ho.
  14. beedee

    Is it coming back?

    Hi There, I haven't been on these boards for several years. I struggled with morphea that was spreading somewhat aggressively from April 2007 to February 2008. After various ointments, light therapy, steroid injections and finally methotrexate, it burned out and aside from my scars, wasn't really something that I would think about daily anymore. The morphea started on my chest as a bump under the skin, which grew to the size of a plum. The area looked faintly bruised as well. Although it remained on the left side of my body, it eventually spread to my upper arm, wrist, palm and ring finger. The spots on my hand and chest are still quite noticeable and hard. Earlier this weekend, I noticed a bump (about the size of a large coin) under the skin on my right forearm, close to my elbow. Although I am quite pale, my forearms are very freckly, and I don't see any discolouration at the surface. The bump feels exactly as I remember the bump on my chest feeling when the morphea started years ago. I will likely get this checked out in a month or so if it persists, as I am traveling for work. I no longer see my dermatologist as I have moved to a different part of the country. I've been doing some research again. is it possible for morphea to return, and could this be morphea even without the bruising or pigment changes at the surface? Any thoughts and experiences that you might have would be most helpful. Thanks!
  15. Hi, I was diagnosed with localised scleroderma back in 2010. I started with one large patch at the very top on the back of my leg. 5 years on I now have 2 larger plaques and 4 smaller plaques. Based in the UK, I was referred to a specialist a few years ago and since then I've tried the steroid creams, PUVA light treatment and now I am on methotrexate. At 22 years of age, I don't really want to be taking methotrexate but I felt I had no other options. I want to know if anybody else has found methotrexate works for them? I am on 10mg (4 x 2.5 tabs each week) and take folic acid every other day apart from the day I take the methotrexate. I cannot drink alcohol on these tablets and I need to be careful in the sun and whilst I understand health comes first, I enjoy socialising and going on holidays. I don't know how long I will be on the methotrexate for and I often think about coming off it but then I worry in case any other patches appear? At the minute it seems to be stable (ish) and I haven't had new plaques appear since being on methotrexate. Hope you can help. Beth
  16. Hello everyone. I am 27. I was diagnosed with localized scleroderma, or morphea, about 5 years ago. I had a big spot on my anterior abdomen and a very large area encircling most of my right breast, and a couple of tiny ones. I was diagnosed via biopsy after 3 different fungus creams--that obviously didn't work--and all four doctors at the clinic scratching their heads. The spot on my breast actually dug into my skin so badly that it deformed my breast severely. So, over the past couple of years, the spots got better. The one on my abdomen has gotten really thin (without using the steroid cream) and you can see my veins in the area. The one on my breast has gotten better too. There is still a lot of thick skin, but it has relaxed enough that the shape is closer to normal. Over the last couple of weeks, I have noticed one starting on my left breast. At first, I wasn't sure, but now the thickening has begun as well as the shine. On most of the websites that I have read, it mentions morphea kind of stopping after 3-5 years, sometimes getting a little better; however, I don't recall seeing any that talk about it coming back. My question is, have those of you with morphea (or knowledge of it), heard of it coming back? Do you think if I go to the doctor and get the steroid cream (mine expired long ago and I always forgot to use it) that it will help prevent my left breast from becoming deformed too? Thank you for taking the time :)
  17. Hi folks! I've had morphea since I was born 28 years ago, and I'm just finally ready to dig in to what that really means. I was born with 1 morphea patch, and over the years continued to get more and more on my stomach, hips, back, and sides. No doctors ever said they knew what it was, or cared to look in to it. Finally at 24 I went to a dermatologist to see what the deal was; she suspected morphea, did a biopsy, and called me to confirm her suspicions. (Never did a blood test - thoughts on whether that matters?) All she said was to put a topical cream on them if I got new ones, and that it wouldn't lead to general scleroderma - and that was that. I don't recall ever having any discomfort with the patches, just always got new ones every few months or years (have 20+ now). Recently though I've been under a LOT of stress/anxiety with a few things, and I really feel like I'm having pain in the areas by my patches. I may be a *slight* hypochondriac about things these days ;) and feel like I want to start sorting out - what are the implications of having morphea? Could there be other auto immune things going on with me? I've had chronic stomach issues all my life - could that be related? I just want to know things! I've made an appointment to go back to the dermatologist for the first time in over 4 years to make them answer my questions too ... but would love to hear from some folks who have been down this road! Thanks! Bonnie
  18. Hello, I have been diagnosed this year with Morphea. My dermatologist was very concerned that it was Paraneoplastic (meaning related to some type of cancer) since my age is 58 and supposedly it is unusual for someone my age to come up with Morphea unless there is an underlying cause. I have had all sorts of studies and bloodwork for cancer. Everything has come up negative so far (THANK GOODNESS!) I had a lapband placed in February of 2008. The lapband is covered over with lumpy tissue, it pains me with sharp stabbing pains at times, and very near to the port is where the morphea started under my left breast. It has spread from that one spot to all across my belly, under both breasts and is working its way up across the tops of both breasts, on my back and down the backs of both legs and on the tops of both thighs and on my arms. All of this has taken place in one year or less. I wonder if anyone else has the same type of situation. I believe my body is rejecting the lapband port and thereby causing constant irritation to my immune system thereby causing my morphea. Any comments or suggestions would be welcome. I am in the process of getting the lapband removed hopefully, if my insurance will agree to pay for it.
  19. Hi all. Haven't posted on here in a long time, hope you are all keeping well. As mentioned in my previous posts I have morphea and the last time I saw a dermatologist about it (maybe a year or so ago), I was told it was in the "burnout" stage. It hasn't really progressed since. Maybe it has just a little or maybe my mind is playing tricks on me because I'm so critical over it. It still doesn't give me pain or complications and I know, especially after reading some of the stories on here, that's ultimately the most important thing. So as of this moment in time it's still purely a cosmetic issue. I'm due to go on holiday in early February to Egypt for 10 nights. It's not going to be exceptionally hot at that time of year, but It's still sun exposure. I'm not particularly looking forward to it, in fact I don't actually want to go. The main reason I'm going is to force myself to go to the beach and hopefully build my confidence up a bit. I just don't know if sun exposure is even something I should be contemplating as someone who has morphea. I can't find any conclusive answers as to if it's bad or at the least non relevant for my condition. I honestly don't want it to get any worse and I'm worried the sun might not be a good idea. As much as I'm not wanting to go to the beach and expose a part of me I'm so uncomfortable with, I know I have to do it for the greater good. I'm so sick of being the person whose held back from living their life to the fullest because of a horrible condition that I'm unfortunate enough to have. Do any of you have any personal experience with sun exposure or any useful information that may help me? Many thanks for taking the time to read this and I welcome all replies
  20. zomby

    Hello I'm new.

    Hello everyone I hope you are all good. As the topic header suggests I am new here and new to Morphea. My story, I'm 24, from UK and female, I was diagnosed with Morphea two years ago after being scared to go to my general practitioner for almost two years prior to my diagnosis in fear of cancer and my first show was on my chest below my collar bone. I had no idea what was going on in my life at that time and was going through some pretty turbulent stuff so I put the strange 'bit' to the back of my head until one day I figured I had best get it checked. So I did just that; I had the usual wait to see if it fades, blood test, more blood tests, more waiting, biopsy of the area, which now kinda looks like a bullet wound; my friends and I make the joke that it is the only hit Chuck Norris got to me before I beat him in a thumb war haha. After the test results came in I was diagnosed with Morphea; however, my doctor told me nothing about it, just that it was a skin disorder and to put some ointment on it. I was given for 6 months then I'd be fine, it was only last night I actually researched it on my own to find out the skin disorder I have which I thought was more like eczema was in fact not. So I'm sitting here confused and dazed, perplexed and troubled over why I wasn't given all the information and that I'm not 100% sure what type of morphea I have. It's scary. Not only that but I have in the past year found more illness in me and now after many tests regarding my new symptoms I have no idea if it's all connected and there's a bigger scarier picture waiting to unfold around me. I come here today humble and in need of clarity and support and I thank you all for it. Thank you and hello :)
  21. At the age of 3, I developed localized scleroderma morphea, I was never really sure of what I had, or even was concerned until a couple years ago when people started laughing and pointing at me like I was abnormal. Years passed and I started doing more research, wondering if it could one day become internal, and how common this was because no one I ever met looked like me. I have it on my hip, and all over my back. I also have vitiligo. Now getting older I'm having more grown up questions like, will I ever be able to give birth and have a child of my own, and even if I can do that, will they also have to live the life of having this immune disease? I would never want to put my child through what I have. I have had several laser treatments because of my low self esteem, and the outcome was just alot of pain and nothing ever helped. I was really looking into getting a tattoo on my skin to draw attention away but, all the research I did never showed any good news. Have you heard any successful stories about tattoos and localized scleroderma? Right now I'm really concerned about being about to carry my own child. Every woman deserves it. I can't imagine not being able to because of my disease. Do you know anything to help?
  22. Jeena

    My story so far!

    Hi Everyone I have only recently found this site and am finding the information really helpful. I am 54 and was diagnosed with morphea by my general practitioner a couple of years ago when I developed a large oval patch with lilac edges under my breast followed by a couple of others on my trunk. I had already suspected this was the diagnosis after looking up my symptoms on the web and readily accepted the reassurance that it would clear up in time and no treatment was necessary. Over time more patches have developed all on my front and back plus one patch on my inner wrist. Some of the patches are really itchy and general practitioner has given me some steroid cream to apply which has had some limited effect. However late last summer I also developed a lot of joint pain plus fatigue. I had a number of routine blood tests plus an antibody test which were all within normal range. Since then the joint pain has increased especially in my arms and hands . I am no longer able to straighten fingers or make a fist and my fingers are painfully curled all of the time. I am also unable to bend both wrists and my lower legs are painfully stiff and my toes feel similar to my fingers. It has also become difficult to stand from a sitting position and my joints stiffen if I stay in the same position. Night time is especially painful. My general practitioner referred me to a rheumatologist who initially felt the problems were due to trapped nerves in my neck however an MRI scan has now ruled this out and I am awaiting a further appt. I am just wondering if any of my problems could be related to the morphea. The rheumatologist was not really interested when I told him I had this. Any thoughts or advice would be greatly appreciated. Thanks and best wishes..
  23. 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
  24. nickisboi25

    Just want to say thank you

    I just wanted to take some time out to say a huge thank you to everyone on these forums. Before I found here, I felt like the only guy in the world going through my problems. You honestly don't understand how much it's helped just having people there that I can talk to and who actually understand what I'm going through. I don't feel so alone anymore. It's been a very difficult year with my personal problems and I've still got a really long way to go. In all honesty I still hate my morphea marks when I see them in the mirror and still long to be just like every other "normal" guy. I'm convinced they're getting worse but I actually don't know if I can trust what I see in my reflection anymore. I do honestly feel bad being so superficial when there are so many people on this forum who have to deal with more than me. But if I can't be honest on here, then where can I. I'd like to wish everyone a beautiful holiday season and if I don't post on here for a bit, a happy new year. I still haven't lost sight of my goals and one day I'll inspire someone the way so many of you have inspired me.
  25. I'm a 25 year old female. About 3 years ago, I began to develop scar tissue on my abdomen. It showed up in the shape of a pair of lips (funny)! The next one showed up on my breast, when it covered 1/3 I finally went to the doctor. They prescribed many fungus creams, to no avail, and finally did a skin biopsy of my breast. I was told it was scleroderma. I finally went to a specialist about a year ago. My opinion of the guy is not high. He didn't run ANY tests... and I have bad teeth, always have, he asked if I've ever done meth, when I responded that I haven't, he says, "Are you sure? You know, meth can do that to your teeth."......?!? Not impressed. He said I just have morphea and don't have to worry about ever getting tested again. So, fast forward to the present, the past three weeks my eyes have become extremely sensitive to sunlight, I have to wear sunglasses until the sun goes down or else I'm squinting heavily. My joints have cracked EXCESSIVELY for probably 3 years but especially lately have become increasingly painful. I have frequent muscle spasms, especially under my rib cage (no, not pregnant. lol). I googled the symptoms tonight and found that they are very common in people with progressive systemic sclerosis (or diffuse form). I'm a single mom with a mortgage...I don't have much money right now, going through a rough patch. I'm worried that my condition is not just morphea.... What do you think, should I be worried?
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