Posted 20 February 2007 - 04:00 PM
Posted 20 February 2007 - 04:05 PM
Welcome to the Sclero Forums! I'm really sorry your dad has scleroderma and seems to be dealing with depression. Take a look at the link I just gave you, it might be helpful. Here is one on emotional adjustment as well.
I hope these help and I'm sure others will share thoughts too.
You will find a lot of information, support and friendship here. Again welcome!
Posted 20 February 2007 - 09:55 PM
I have unbearable pain in my joints when I go off my pain meds and my Prednisone. Cialis has been a miracle drug for my Raynauds. I can't say that I am 100 percent pain free when I stay on the meds, but I am managing pretty well most of the time.
Some doctors are beginning to take pain more seriously these days. It's no longer considered just a side effect of an an illness, but almost an illness in its own right. It needs to be managed. A person in a lot of pain really can't function and that is, in itself, depressing.
You'd think the doctor would ask questions designed to reveal depression, particularly in a patient with a chronic illness.
Unless this doctor can do something to seriously relieve the pain, I think I would ask for a referral to a pain management clinic if I were you or your father.
Mary in Texas
Posted 21 February 2007 - 03:57 AM
Also, I don't think winter is the best season for people suffering from this disease. This may sound a bit ridiculous, but is there any chance your Dad may go for a few days to a warmer climate (or get some light therapy)? I can assure you that a bit of sunlight not only helps with the Raynauds, but helps us feel a lot better inside too.
Best of luck to you,
Posted 21 February 2007 - 04:48 AM
For years--since shildhood, actually--I have dealt with what is typically called SAD (seasonal affective disorder), and it hit long before the serious chronic pain did, but of course the pain will only make it far worse. It seems that most people with CTD's are very sensitive to weather, and this winter has been bizarre and erratic around the country, and one of the worst I've ever been through to date. No doubt, the depressions caused by SAD have an organic cause, so bringing it up this way might be better than even the tiniest hint that your father's depression is mental (although that's where it hits). Since your father doesn't like serious conversation, talk about the weather, and maybe he will see what's happening in a different light and eventually be willing to deal with the subject more openly with you--or even with himself.
Oh, and don't apologize for "letting some stuff out" since that's what we're here for! I greatly appreciate the input from my family here, and unless I let out stuff from time to time, the answers might not come at all. I hope that your dad starts feeling a bit better soon, and that there will be an early spring to give some relief to everyone's joints and minds!
Best wishes to you and your dad,
Posted 23 February 2007 - 12:57 PM
Posted 24 February 2007 - 09:57 PM
I know what itâ€™s like to try to do the best thing for oneâ€™s father, while trying not to butt in or seem to be telling him what to do. I donâ€™t know how old you and your father are, but my own father is 89 years old and sharp as can be. His only problem right now seems to be his very poor vision.
He had a double bypass operation a few years ago, however, and, from that experience, I know how difficult it is to help without taking over! Maybe itâ€™s typical of his generation, but my dad seemed set on taking as few pain medications as possible, as though this was some sort of virtue or something.
I think he also feared getting immediately addicted to anything he took. Fortunately, for me and my dad, he recovered and was able to get back to taking very few medicines.
In the case of your father, though, he will not recover from scleroderma. However, there are many treatments now that make many of us pretty comfortable for at least some of the time. I was diagnosed with CREST about 30 years ago, but didnâ€™t have much of a problem with it until about three years ago when I really took a turn for the worse. Since then, I have had severe rheumatoid arthritis pain, finger ulcers, a calcium deposit in my knee that got infected -- well, you get the idea. But I am leading a pretty normal life most of the time because of the drugs Iâ€™m on. Without them, Iâ€™d be in too much pain, most of the time, to function. I believe Iâ€™d be confined to a wheelchair and my hands would be twisted to the point that I would be unable to use them.
You mention your fatherâ€™s joints sometimes being so stiff that he has trouble moving around and being in â€œunbearable pain.â€ Iâ€™m not a doctor, and I donâ€™t know all about your dad or his particular case, but, Kerry, I will tell you that I donâ€™t believe this is necessary!
A lot of people on this board take methotrexate, but I am not sure exactly what itâ€™s for. I have spent a little time looking it up, but still havenâ€™t found exactly what I was looking for. If itâ€™s for joint pain, why are they cutting your dadâ€™s dose down? Is the drug hurting your dad somehow? Could the cutting down of the dose be causing your dadâ€™s pain to increase? You know, the doctor would want to know if your dadâ€™s pain was increasing as the methotrexate dose goes down. So, if the doctor hasnâ€™t been told, he should be. Does he plan to put your dad on something besides the methotrexate, and, if so, what? When does he plan to start it? Is your dad taking anything else right now to treat this serious disease?
In the case of joint pains, it is my understanding (again, Iâ€™m not a doctor) that treating these pains is crucial, not only to make the patient feel better, but also to prevent permanent damage to the joints. So, maybe your dad would see the sense of telling the doctor about his pain if he knew that treating it was going to prevent damage that can leave his hands, ankles or hips or all of his joints crippled to the point that he canâ€™t even function.
Keep reading on the forum and also check out some of the sites mentioned. Share your information and research with your dad. Maybe if he reads about treatments that help the joints and ease the pain, he will be able to discuss this with his doctor. Hearing it from his little girl is one thing, but reading an article written, perhaps, by a doctor, is something else and may have more validity for your father.
I am sorry this is so long, but you and your dad have been on my mind ever since you wrote several days ago. I just kept thinking of things I wanted to say to you, so here I am!
Your dad is lucky to have you in his corner. Good luck in helping him.
Mary in Texas