I have recently tested positive for a high ana levels and scleroderma on two blood tests. I was dismissed by the rheumatologist I was referred to and the emergency room. My first physical signs were fatigue but then it evolved to an emergency room visit and a follow up to my primary for discoloration of my hands. I am required to wear gloves all of the time since, according to my primary my body is not able to properly heat my hands and they will turn purple almost black without gloves. It seems to me that age is against me when I saw the specialist since I am only 29. Right now, since I am finding the specialists in the area do not really understand or know how to treat the symtoms I am having I am trying to get into the Cleveland clinic for further evaluation. From the information I have gathered online this disease is overlooked or misunderstood by many specialists and is rare. If anyone has similar issues or any helpful advice it would be much appreciated as to what type of specialist I should see or how they have coped with an auto immune disease that is affected their day to day lives. I am having difficulty eating, sleeping and functioning on a regular basis. It seems that I am sick all of the time and I may have two or three good days in a two week time frame and the rest of my days I am struggling. Any advice would be much appreciated!
Hi JBK1983. First off you need to see a rheumatologist who is a sclero specialist.
You need to find out which kind of systemic sclero you have as that can point in what directions you need to be vigilant about. There are 3 systemic forms: limited progressive systemic (formerly known as CREST), diffuse systemic, and sine. These terms mostly refer to where the skin hardness can occur. Raynaud's can be treated by both wearing gloves (you can often spot fellow sufferers in the grocery store as we have gloves on in the middle of summer when we are in the frozen foods aisle, lol) and maintaining good circulation practices (layering your clothing is good) as well as with medication. There is also treatment available for the fatigue, joint pains, etc.
I have limited systemic and have been diagnosed for about 10 yrs or so. My Raynaud's however has been with me since I was a teenager in both my hands and feet. (I live over in Rochester and winters are doable with proper clothing and treatment, lol) Each person has a different course of disease in sclero, it should be noted, and although there is no cure there is treatment available. Plaquenil, for example can help with the fatigue.
Please don't hesitate to <ask questions> and I'm sure that others here will add helpful tips and advice.
Last edited by Administrator; 06-18-2013 at 10:09 AM.
The Following User Says Thank You to luca689 For This Useful Post: JBK1983 (06-19-2013)
Thank you very much for all of your help. I am currently in the process of researching about scleroderma. I find that the more information and educated I am on this disease the better off my life now and in the future will be. I appreciate the information especially that there is treatment for fatigue like Plaquenil, I will be seeing my doctor today to discuss visiting the Cleveland Clinic but will mention this medication and see if he would recommend it for me. I have noticed that besides my problems with my hands that fatigue and flu like symptoms each morning have made daily life challenging. I pray I can be properly diagnosed and find a rheumatologist in the area that will be not only thorough but help treat some of the major symptoms I am currently having. I also spoke with my health insurance and they were very helpful by setting me up with a case manager, registered nurse and will be getting me in touch with a nutritionist and a social worker to help with medical costs that they may not cover. I am certainly finding that a majority of the rheumatologists in the buffalo area are not taking new patients or are booked 3 to 4 months ahead.
It has been a catch 22 for me recently. I was working as a full time manager and since I have been sick more often than not I am currently on temporary disability which I have found out is not enough money to keep my home and I am not physically able to work full time to keep health benefits active. It is frustrating to see that a person who is not sick who may be fired from there position would get more help financially from unemployment but when you find yourself in a position of being ill and unable to work like myself the temporary disability is no where near unemployment. I am not sure where to begin, I have always held a full time professional position and I do not know if social services helps in any way?
Is it possible to get to the point of managing your symptoms where there are people who can maintain or return to work full time? I understand from what I have read and what information I have received from my doctor that this is a life long battle and if any one has any more advice or is now or in the past dealt with similar concerns please message me.
Luca689 thank you for the information that you provided to me, it is very helpful and if you have any other advice please message me. Thank you in advance to all for your time and thoughts.
I just wanted to let you know that I have always worked full time and even raised a family. I think I had to wait about 6 months to first see a rheumatologist, so that is a typical wait time in our area. Every single person's course of sclero is different and the disease waxes and wanes according to it's own schedule, and it is also different depending on the type you have. My first symptoms were chronic hives. I have had Raynaud's for a very long time before that. Raynaud's is usually managed both by proper temperature control and good circulation practices as well as medication. Fatigue is managed by good sleep hygiene, managing your resources as well as medication. I noticed that you mention "flu-like" symptoms. Gerd is often managed by medication, the esophagus can be stretched, and so forth. I don't know if you are out in sunlight much, but many sclero patients are similar to lupus patients in that sun exposure can make you feel like you have the flu. I know in my case that this is true. If you have migraines that are sclero caused or associated, there are calcium channel blockers for them. Again, so many of these things and treatments are type of sclero specific. I mentioned before that I have always worked, as with many families it was and is needful. I do sympathize with you. My personal philosophy is that I won't let sclero "get the best of me" because me and my family get that. I do hope that you get a diagnosis soon and wanted to mention that even a high ANA and positive sclero antibodies do not always mean that you have a full blown case of any type of systemic sclero. Many people are diagnosed with UCTD (which is treatable albeit not curable) and run a much milder course of disease, and primary Raynaud's can cause elevation of these as well as many other things. Best wishes!