Guys, has anyone on this group been on disability for their scleroderma condition? I feel as if everyday tasks are becoming such a struggle at this point, all I'm doing is crying at the moment.. I had to come home sick today because I could hardly stand, my hips, legs, arms, back and neck are litrally giving me so much discomfort and pain, not To mention the headaches I'm faced with mostly daily!! I feel like I am trying my hardest and just keep getting knocked back because of this constant shit..
My mum thinks I have fibromyalgia on top of what I have already, but I can't see that myself, I have my next dermatology app on the 10th July!! Such a long wait and im so close to pulling my own hair out here
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Rebecca1993Foster
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Hi Rebecca. I'm on disability for scleraderma. I was diagnosed in 2016 but it seems I had it a year previous to that. I had to give up the job I loved because the pain like your experiencing was just to much to bare. I was eventually diagnosed with myositis. Inflammation of the muscles. Part of the condition I'm afraid. You need to contact your doctor and get a referral to a rheumatologist. Good luck. Don't be down. Fight it x
Hi Rebecca, sorry to hear you are having such a horrible time. May I make a tentative suggestion, you say you are crying all the time, perhaps maybe you are experiencing a low mood/ depression, make an appt with your GP to discuss how you are feeling. I am making the presumption you are under the care of a rheumy, see if you can have an appt with them to discuss how you are feeling. What medication are you on? that may be what needs to be looked into. Keep posting on this site, we are always here for each other. I shall sign off now with my usual, smile and wave folks, smile and wave. xx
Hey fairy 56, I'm actually not with anyone nor on any medication, my GP decided to stop seeing me in 2009, I have been back and forth to the GP with this and that abd feel I am getting nowhere, I went in the other day and demanded they send me as referral to a dermatologist as I havnt seen then since 2009 either, I'm so disappointed in how I've been neglected! And now I am at my worst state I have ever been at.. I'm going to try and book an appointment to be seen tomorrow because I'm in so my pain in my left hip, my neck, and muscles in arms legs and back..I am a bit depressed at the moment too because of what's going on, I feel as if my body is just crumbling away, im 24 and feel 104 😂, i try and stay possitive but the pain interupts and just destroys my mood.. I feel as if the doctors aren't doing enough, ive been told by most sufferer that they have been seen yearly.. I'm so disappointed .. im really sorry for the depressing post 😂😂xx
Hi Rebecca, I really think you need to make a double appt to see your GP, jot down your symptoms and that you are feeling low. Whilst there ask if you can be referred to a rhuematologist. When were you diagnosed with Scleroderma? If you were diagnosed then technically you should be under the care of a rheumy. I can only suggest that when you see your GP, ( when you ring for an appt tell them its an emergency appt you require) that you tell him/her everything that you are going through. We all have our down times, but we are all here for you, and you need not apologise for your post, sending you hugs and remember you are not alone xxx
Thankyou my love, I'm going to try and book one today, I'm hoping she gives me some kind of pain relief, I'm also getting cold after cold too, my immune system seems to not be working at all at the moment, giving my working environment.. I will update if I get this appointment ... thankyou all for all your support.. love love love
I seldom reply to posts, although I've been given such help myself via this group regarding my fear of iloprost treatment, but I was alarmed to read of the neglect on the part of your GP.
It is your legal right to have a second opinion and also your legal right to choose which hospital.
I have Primary Sjogren's, Scleroderma overlap (whatever that means), fibromyalgia, thyroid eye disease, VERY severe Raynaud's, Interstitial Lung disease and bronchiectasis.
I am seen by the top hospitals by the best specialists.
GP's have limited knowledge in such specific conditions.
I really hope you get help soon, but keep that chin up .... there is help out there for you. You just need to find where it is. Google the hospitals and specialists near you before you see the GP and go in showing you are determined to get the referral you need and exactly which one and let him know that you are aware this is your legal right. Perhaps take a good friend or family with you. Also, as mentioned in another post, book a double appointment and hot down all the points you want answered
Start by finding a good rheumatologist which is near to you and any other referrals can be made through that specialist. I'm under six hospitals and receive excellent care!
I was reading your post and I understand you have to really explain to your doctor just how serious your condition because sometimes just because you are young they tend to think it’s nothing serious. I was 16 when I knew something was wrong I didn’t know what it was how to explain it but I would get this very severe pain in my stomach and then my whole body would be what I call inflamed even my skin was so irritated I didn’t want nothing to touch it. This happened of and on when I was 20 I was at college and it happened again I was in so much pain I could barely walk so a friend of mine pick me up and carried me to my friend car and they took me to the local hospital but they was just like it was probably something I ate but it wasn’t. I had these symptoms off and on my mom would take me to the doctor but they didn’t help until on day I was in the doctor office and I put cold water on my hands so he could see how they turned blue it was painful but I need him to see something was wrong. I was referred to a rheumatologist I have reynauds, scleroderma, fibromyalgia, I had endometriosis so I ended up have a hysterectomy I also lost my left kidney and the scleroderma has affected my lungs as well. I also have deteriorating of my lower spine the scleroderma have my skin on my face so tight my lips are gone and my teeth are showing be I had what I called facial seizures. But yes I am on disability I am in pain daily but I don’t cry about it and you shouldn’t either something emotions make it worse. As they say smile and wave and I really hope you get the help you need and deserve.
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Raynauds and scleroderma 
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Advice needed re: talking to my GP - any advice gratefully received
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