Lost and confused

Is it just me or do the rest of you get confused when talking to your doctor? When I was first diagnosed I was told that I had Limited Systemic Sclerosis, then as the converstaion went on it changed from Sclerosis to Sceroderma. I figured that the Scleroderma was another symptom of the Sclerosis, but no that wasn't true. Some people call it Limited Systemic Sclerosis and some say it is Limited Systemic Scleroderma. Now my husband tells me that Scleroderma is the term for the skin invovlment of the Sclerosis and that when I fill in any forms or tell people what I have I should say that I have the Limited Systemic Sclerosis. Bleh I get soooo confused

Also when I go to the doctor with symptoms that I am pretty sure they are caused by the LSS, I get told that no they don't think it is caused by it, like the pains in my abdomen and torso area that are in connective tissue points, so one would assume that as Scleroderma (whatever you want to call it) is a connective tissue dissorder, that the pains would be caused by it! And one doctor tells me my foot pain is caused by the LSS, then the next visit, I see someone else who tells me no it isn't.

With the fatigue that I get, I was told that I needed to listen to my body and when I was tired, I should sleep and get up when I wasn't tired. Ok sounds good to me, but now at my last appointment. I was seen by one of the registrars and she told me that I needed to push through the tiredness and stay up, because if I slept during the day then I would not sleep at night! So when I do this, I get so tired I can't even think straight and I drop things and run into walls. LOL

It just seems to me that this is all guess work for the doctors and depending on who you see is what you are told. Makes me more than a bit angry when I leave my appointments, as you feel you are just a guinea pig, and they are trying things out to see what works, and if it doesn't work then you are told that the disease is very different for different people, when I think it is just a case of they don't have a clue!

4 Replies

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  • HI. When I go to my GP, I usually see the same GP at the practice. I was lucky to have a GP whose wife also had Scleroderma, when I was first diagnosed.

    I've also been seeing the same consultant for the last 5 years, whom admits when he doesn't know what to do with me! Usually though, when this happens, my local hospital will ring doctors at the Royal Free hospital in London, or I get an appointment there (if I'm well enough to travel).

    If a registrar sees me at the local hospital, they usually call the consultant for advice. If possible, take someone with you to your appointments (someone who knows you and your experience of Scleroderma well).

    Pushing through the fatigue does more harm than good. I'm still learning to listen to my body. If you sleep in the day it's because you need to!

    Treatments are a case of trial and error. And to some extent, Drs don't have a clue as they cannot control the disease.

    I'd recommend getting in touch with the Royal Free Hospital via your consultant (if they haven't done so already).

  • My consultant doesn't know what to do with me either. although she is open to ideas sometimes I feel as though I'm a teaching aide rather than a patient.

    For example I was sent to a fatigue clinic who where helpful but I found the tiredness drastically reduced when I cut wheat from my diet, not something that they had recommended. Its all very well saying that they treat the patient case by case as no 2 patients are the same but I have found it is only by talking to fellow sufferers and trying different self-aides that I keep on top of things health-wise

    I also found the book

    A Patient-Expert Walks You through Everything You Need to Learn and Do.

    The first year Scleroderma

    An Essential guide for the newly Diagnosed

    Karen Gottesman

    quite helpful although it is very American.

    I had been diagnosed for over 10 years when I read it but still found it gave me some interesting questions to ask next time I saw the specialist al;though I now have no idea what type of Scleroderma I have!

  • From talking to my GP and Rheumatologist (both very very good) and also a close friend who is an senior occuaptional therpaist used to dealing with these illlnesses, I have always been advised to rest when possible when I have worn out days. This took a long time to come to terms with as I've always been very active both in work and home and swam 2 miles 4 or 5 times a week. Since i accepted that I need to rest when tired I have been able to cope much better, It doesnt stop the worn out days but means that Im not permanently tired and do get some days when I feel much better. I personally am unable to push myself through the fatigue and find that this makes matters much worse. I have also recently started taking amotriptylene and found this a huge help with the fatigue.

  • Having had Scleroderma and Raynauds for over 30 years I have seen many doctors and specialist. I have found that when it comes to my condition I know best. Doctors used to tell me I was wrong about things then 20 years later they now agree with what I was saying. I guess it just highlights the need for more research and trials with real patients and for doctors to listen to us as we have the most experience of this condition.

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