Scleroderma

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I'm new here!

Hi, my name is All4babies. I'm here because
I have Lupus/SCL. I have a Rhem but All he suggest is meds meds meds. While I understand some are essential, I just feel like thats all he knows to do.I'm so frustrated and of course stress, confusion and worry are definitely not helping.#MightyTogether #Fibromyalgia #Lupus #Scleroderma

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Diagnosis

As some of you know, I have really been struggling with my hands lately. I have cerebral palsy and have had chronic hip pain for the last 7 years.

My rheumatologist thought I had fibromyalgia, but I don’t. My rheumatologist worries that I might develop scleroderma. My ANA is extremely high, but I do not have rheumatoid arthritis. I have progressively been losing function in my hands and my knuckles turn purple at times. (The high ANA and pain in my hands are not related to cerebral palsy.) My rheumatologist said this could be consistent with arthritis.

It hurts to write, type, and do many other things. The hip pain was bad, but my mentality has gotten worse as my hands have lost functionality.

Has anyone else experienced anything like this? At times I want a diagnosis so this pain could be treated.

#Undiagnosed #CerebralPalsy #ChronicPain #Arthritis

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After living with primary immunodeficiency, osteoarthritis, narcolepsy, asthma, gi issues incl malnutrition, and more for many years, ive met my match

I have been hsving severe skin issues, worsening lung and breathing issues, sudden renal hypertension and general high blood pressure and loss of function in my hands, and even sudden unexplained cardiac issues for just over 5 years now. And it has been an awful experience for the most part where doctors refuse ti believe how bad thjngs are and either im causing lots of the thing i experience myself, or saying its a new psychiatric condition i developed, a nurse this past week who has known me for a number of years was once again havjng a very hard time getting an iv in so i could havd my ivig treatment it seemed like the skin on my arms has become very thick and tough and my veins themselves are no linger very good and tend to really just disappear. This is not the heard these same things. But this nurse went a step further snd connected the dots with a bunch of other symtoms that have started over the past 5-6 years and the worsening and resistance to treatment of my asthma and muscle and joint issues, and asked me if anyone has thought of or mentioned testing to determine if i might actually be having symptoms of systemic scleroderma. I hadnt ever really heard about this condition, but suddenly dojng research about it this week i feel pretty certain thar when and if i can get an md to seriously listen and consider this posdibility, im going to end uo having a confirmation if this diagnosis. The way i have been treated as thjngs have progressed has come close to really breakjng me, especially cimbined with the severity of discomfort pain and disabiity that have progressed pretty significantly over these last years. But i am known as a miraculous survivor and people think im a really strong person. And somehow i have managed to get through these really difficult experiences over these last years abd still be a generally happy, optimistic person who works hard to make a difference in this world but as i have resd more and more medical articles and had somehow come to terms that this probably my dagnosis the progression i am likely tibexperience (and up to this point the progression of symtoms matches what is described with this disorder almost to the finest details) i feel relief that there kosy likely a medical explsnation for ehat ive been experiencing, but i also fe my will to continue trying to fight and live my life as i have always managed to somehow continue or return to doing, is quickly evaporating. My life has been an amazing and wonderful one i am so grateful for, but the degree of difficulty i have experienced also been very extremr and im tired, so tired and so traumatized by the way i have bedn trearmted as the symptoms have appeared and progressed, that i dont feel like have whats needed this time to call upon to give me the strength and determination to live my life and somehow make this experience havd some positive meaning for me and in the way i am who i am in this world. I have even through medical crisis after crisis when there has been strong indication this was the final straw for my body, and after many years of struggling to handle a life with bipolar and very severe complex trauma from so many years of so many different really horrible ongoing traumatic experiences i have been able to rise stronger and more grounded, happier and more able to share my gifts ghrough each of these things, but this time, when i am so close to reaching the age if 55 when i was never thought to medically have a chance of survival even as a newborn, i have done all i have the strength to do in trrms of being resilient and fighting for what i have always felt so impirtant and my entire reason i exist, and its not that i want to die ir anything, but i literally sont feel i have what i need to possibly keep putting one foot in front of the other and being as present in each moment as possible and taking life moment by moment and all i can imagine is staying in my warm bed cuddling my very spevcial and sweet kitty and chatting with absolute soulmate if a best friend who lives thousands of miles from me and just not pushing function and have a life beyond thise three things from here forward. I cant see how i will ever be capsble of one foot after the other moving through this difficulty for however much longer i am blessed with this existence and fighting to continue. So please light a candle in the dark, say a whispered prayer and or send me all the loving kindness you can when you read this. Thanks
#Scleroderma

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New to the group - Hi!

After many years of symptoms and suspected autoimmune disease I had a positive ANA in February 2023. Further testing in September 2023 came back ENA positive for a couple of things but still waiting on an actual diagnosis (wait time for my rheumatologist is about 6 months each time). Lupus had been suspected and possibly Sjogren's and Scleroderma. I'm hoping that I can finally start treatment and get at least some of my life back!

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