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  1. 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. 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.
  3. 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?
  4. Since joining these forums I can't explain how much so many people have helped me, so I wanted to start by saying thank you! I'm lucky enough to be getting a consultation and application lesson for camouflage makeup to cover up my Morphea on my stomach. Trust me I know I'm incredibly fortunate that so far my experience with Morphea is a mild cosmetic issue and for that I'm grateful but seeing the way its changed my skin does get me down. I'll be the first to admit that I care about looks way more than I should but please try not to label me vain, shallow or superficial. I'm still young and maybe as I get older that part of me will change. I wanted to know if any of you have had any experience with makeup to cover up your marks/scars?
  5. Morphea patches on the right side of my abdomen.
  6. I've only just joined these forums recently but you have all helped me so much. Someone said to me, "everyone on here has experienced loss in some way". Scleroderma has certainly taken a lot from me...but today I took something back. I finally got up the courage to go swimming. I was so scared to expose all the marks Morphea has left me with but more than the fear, was anger at this disease breaking me down to the point of stopping me doing something I used to love. So I may not be in the shape I was some years back and I've got a long way to go till I get to where I wanna be but today I took that first step. I feel so proud of myself that I finally did it and while it was really hard I'm so glad I did. If it wasn't for speaking to some of the people on here I don't think I would have been able to do it. This is just the beginning and one day I hope to help and inspire someone the way so many of you have done for me. Thank you!!!
  7. Hello All From spending time on the forums I've noticed that most people post about systemic forms of scleroderma as opposed to localised forms of scleroderma. As I have both localised and systemic scleroderma I thought I'd give a shout out for the localised forms, in particular morphea, as that's the one I have. I have uploaded onto the Sclero Forums Photo Gallery various photos of my morphea patches some of which are rather large. I think in total I have over 20 patches on my legs and there seems to be a new one everyday. The ones on my thighs are the largest and they itch unless I keep them moisturised. Unfortunately the patches have disfigured my legs, when I'm outside my legs are covered and will always be, even when morphea stops progressing the patches remain as the damage is done. Have a read of our morphea pages to find out more about this form of scleroderma. Let's not forget bullous morphea, a rare, blistering form of morphea, the link takes you to a picture of my calf two (?) years ago and here is a photo of the same calf now where the bullous morphea has burst and ulcerated. Look at what linear scleroderma can do, it's a line of thickened skin but it can affect the bones and muscles underneath it limiting the motion of the affected joints and muscles. What I find amazing about scleroderma, amazing as in can there be such a relentless, unforgiving disease, is that even the localised forms, that don't affect the internal organs or reduce life expectancy, can disfigure, disable and devastate. Have a look at our series of Scleroderma Videos , especially the videos about localised scleroderma, morphea and linear. Whatever form of scleroderma you have I hope you'll find these forums are the place for you and take care.
  8. Morphea patches on calf. Amanda Thorpe
  9. More morphea patches. Amanda Thorpe
  10. Massive morphea patch Amanda Thorpe
  11. More of my morphea patches! Amanda Thorpe
  12. One of many patches of my morphea! Amanda Thorpe
  13. First of all sorry if this all makes no sense, I am not good with wording haha My name is Hayley I am aged 23 and live in Bristol, UK. I have had Morphea since I was 7 years old. My mum discovered it and we started going to the hospital on a regular basis. So I have a very deep indentation on the right side of my head it is about inches (hair does cover it but have to wear hair certain way to hide the dip) I have no fat tissue or muscle in my right temple so it dips in (also have to have a heavy fringe to cover) Large area of back and collar area is also discoloured and loss of muscle and fat tissue. As you can see most of my condition is cosmetic and I have had many things done to even out the right side of my body to the left like fat collagen injections, face lift on right side, fat tissue from my legs and abdomen put into pack and front area. My condition also means that I have lost a lot of nerves in the right side of my face. My right eyebrow, nostril and part of lip is paralyzed. I have seen many doctors about this and there is not much that can be done I was bullied in little school and big school, moved schools 3 times. People used to call me dent head or jackal and Hyde because of the difference right and left side of my face. I have accepted that I look different and I try to hide it the best I can with my hair but it does affect me. A lot of people say they don't see it unless I point it out. Now I have had all my surgery I think I look pretty normal About 2 years ago I started to get blurry and double vision in my right eye. I did not think it had anything to do with the condition. Yesterday 13.07.12 I had an appointment to see what can be done about my eye...My Doctor sat me down and told me that they have found inflammation, fluid and white cells behind the effected eye upsetting for me as I never thought it would become more serious and dangerous. He has booked me in for a emergency 3 day treatment undergoing 4 steroid injections to try and get rid of the inflammation. He has scared me of many things that could go wrong and things that may happen if the steroids do not repair the eye. Having this double vision which is getting worse every day is very upsetting. I am faced with.... Not being able to work Vision is not good Not being able to drive Right eye is turning in and very visible Undergoing a lot of ongoing surgery and steroids. I am scared and worried what the future may hold. Has any one ever been through a similar situation or is going through the same thing. I have been told by my doctor that I have a very RARE case of Scleroderma as it effects my nerve system. Thanks for reading. H x R
  14. First of all sorry if this all makes no sense, I am not good with wording haha My name is Hayley I am aged 23 and live in Bristol, UK. I have had Morphea since I was 7 years old. My mum discovered it and we started going to the hospital on a regular basis. So I have a very deep indentation on the right side of my head it is about inches (hair does cover it but have to wear hair certain way to hide the dip) I have no fat tissue or muscle in my right temple so it dips in (also have to have a heavy fringe to cover) Large area of back and collar area is also discoloured and loss of muscle and fat tissue. As you can see most of my condition is cosmetic and I have had many things done to even out the right side of my body to the left like fat collagen injections, face lift on right side, fat tissue from my legs and abdomen put into pack and front area. My condition also means that I have lost a lot of nerves in the right side of my face. My right eyebrow, nostril and part of lip is paralyzed. I have seen many doctors about this and there is not much that can be done :( I was bullied in little school and big school, moved schools 3 times. People used to call me dent head or jackal and Hyde because of the difference right and left side of my face. I have accepted that I look different and I try to hide it the best I can with my hair but it does affect me. A lot of people say they don't see it unless I point it out. Now I have had all my surgery I think I look pretty normal :D About 2 years ago I started to get blurry and double vision in my right eye. I did not think it had anything to do with the condition. Yesterday 13.07.12 I had an appointment to see what can be done about my eye...My Doctor sat me down and told me that they have found inflammation, fluid and white cells behind the effected eye :( This is very upsetting for me as I never thought it would become more serious and dangerous. He has booked me in for a emergency 3 day treatment undergoing 4 steroid injections to try and get rid of the inflammation. He has scared me of many things that could go wrong and things that may happen if the steroids do not repair the eye. Having this double vision which is getting worse every day is very upsetting. I am faced with.... Not being able to work Vision is not good Not being able to drive Right eye is turning in and very visible Undergoing a lot of ongoing surgery and steroids. I am scared and worried what the future may hold. Has any one ever been through a similar situation or is going through the same thing. I have been told by my doctor that I have a very RARE case of Scleroderma as it effects my nerve system. Thanks for reading. H x
  15. Hello all, I have been pondering a great many things since researching this autoimmune disorder. I am an overweight individual with morphea and I am on track to becoming a healthier me in just general. Most importantly going to build some muscle. Looked and have planned all the exercises and I have built exercises based on my goal and limits. I know to consult with a doctor with exercise regiments that isn't a problem. The question, I guess, is there any sort of studies out there relating to this condition and building muscle? Mostly I am focusing on the facts that point to that morphea can go below skin into muscle and bone sometimes. Do any studies support this for a positive thing to do or does it aggravate or trigger the morphea? It is healthy to exercise and be an active individual overall which is why I feel so silly asking this. However I have read it isn't good to spark your immune system. Just wondering if there is any studies or documents already referring to this topic. Sorry, if it is silly to ask just so curious. Been looking everywhere but maybe in wrong places. -Kblueeyes
  16. Hi, I'm new here and my question is about getting permanent hair removal. I'm 20 years old; I have been diagnosed with morphea last year, though it started when I was about 15, but then I thought it was just some weird skin coloration. Since it's on my lower back I didn't really look at it often and only in a mirror... but now I know what it is and kinda freak out because I have had some veiny thing on my back for the last year or two (I didn't show it to the doctor, I didn't think and I was in shock), but higher, kinda on my shoulder blade. So now I'm starting to think that I should be careful with what I do with my body and I'm thinking about getting permanent hair removal but I'm scared it's going to start a new one or it will worsen my condition since permanent hair removal is not a very natural thing to do and all that...... Have any of you done it ? Is it safe ? Do you think the "veiny" thing is a new morphea ? I'm sorry if these are stupid questions... also sorry about my English, I'm French.
  17. Hi, my daughter has a type of rare morphea called Atrophoderma of Pasini & Pierini. She is 16 years of age and was first diagnosed 2 years ago. The red marks on her body cover 2/3's of her back, buttocks and thighs. When initially diagnosed she also had a linear morphea down one leg but this has disappeared. I am extremely concerned as the marks on her back are now starting to sink and I know that once this has occurred the process is irreversible. We see a consultant once every six months and he has prescribed topical steriods in the past although this has had no effect in halting the process whatsoever. He is now suggested UV light treatment but to be honest I feel he doesn't really know what to do. I am at my wits end trying to understand this illness, get the best possible care for my daughter to avoid her being seriously disfigured for life and trying not to frighten my daughter who has no real idea of the potential outcome of this illness. Could someone please help me and point me in the right direction. Thanks, Jenny
  18. Hi, I'm Sara... I'm 35 and I was diagnosed a couple of years ago as having morphea. My symptoms are very mild compared to most other people on here, but thought I'd say hello anyway! :) I started off with a "bruise" about the size of a 50p piece on my right calf - that never went away! This was when I was pregnant with my son who is now 7 1/2 and over the next few years it spread until it covered from my ankle all the way up to my calf (my doctor was less than interested and huffed and puffed... in the last couple of years it has spread more rapidly and now stretches all the way up to the middle of my buttock. :( I am very lucky as I don't really suffer any other symptoms other that occasional itching and it's quite tight and thickened at the back of my ankle. I also have telangectasia (face, neck, arms) and other various marks on my left leg which apparently aren't morphea and are unknown quantities I am seeing my dermatologist on Tuesday as I am probably going on methotrexate as long as her senior agrees with the diagnosis etc! Anyhow, if any of you have this type of morphea I'd love to hear from you :emoticons-thankyou:
  19. Hi I have morphea but would like a tattoo, does anyone know if it is safe to have one? You may think I am mad wanting a tattoo when I have this disease but it is hard to describe. I want one as it's something I want on my skin not something I have to accept and deal with, if that makes any sense, not like morphea where I have no choice what happens and how it spreads etc. Can anyone help?
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