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#1 daddieslilgirl5

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Posted 20 February 2007 - 04:00 PM

hello all, I hope you're not all in too much pain from the cold season. I have a quick question (men please read). I notice in the winter months when my dad's pain is worse, and his raynauds (sp?) acts up really bad, that he sometimes seems to get depressed as well from all of this scleroderma business, I'm still having issues w/ it myself. so I was wondering has this happened to anyone else? if so how do you suggest to a man that he may be depressed, I don't know if I should mention it. there's alot more that I don't talk about, and my dad doesn't like serious talks, especially about depression. any suggestions? they have cut down my dad's dose of methotrxate (sp?) and he's not doing too bad w/ that, but his pain is sometimes unbearable. and it's really hard for me to watch him try to move around from his joints being so stiff. I'm sorry I kinda let some stuff out there, but you guys and gals can understand, my friends don't get it. thanx for listening. try to stay warm out there, and be well.

kerry B)

#2 Sweet

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Posted 20 February 2007 - 04:05 PM

Hi Kerry,

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!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#3 bookworm

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Posted 20 February 2007 - 09:55 PM

Kerry, is your dad's doctor doing anything to help him with his pain? Is the doctor a rheumatologist? Has he any experience with scleroderma?

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

#4 Claudia-DR

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Posted 21 February 2007 - 03:57 AM

Hi Kerry! I'm so sorry to hear your Dad hasn't been feeling well. I know that pain makes us feel bad inside as well as outside, so pain management is definitely something to look into.

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,

Claudia

#5 Elehos

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Posted 21 February 2007 - 04:48 AM

Hi Kerry,

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,
Elehos

#6 daddieslilgirl5

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Posted 23 February 2007 - 12:57 PM

thank you all for your replies. bookworm, to answer your question my dad has been seein a dr. for atleast 2 years now for this, whether or not he's a rheumatologist I can't remember, but he is the only dr. in the area w/ as much knowledge as he has w/ scleroderma. he is a great dr. but I think the problem is my dad has too much pride to address the issue when, and if it comes up. I spose if it gets really bad again I couldsay something, but I think my best bet is to listen when he talks and hide when he's angry lol. I get alotta knowledge from reading these forums, alot easier than reading the scary books. so thank you all for bein here. take care, and be well

kerry B)

#7 bookworm

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Posted 24 February 2007 - 09:57 PM

Hi, Kerry,

I know what it’s like to try to do the best thing for one’s father, while trying not to butt in or seem to be telling him what to do. I don’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 it’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 didn’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 I’m on. Without them, I’d be in too much pain, most of the time, to function. I believe I’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 father’s joints sometimes being so stiff that he has trouble moving around and being in “unbearable pain.” I’m not a doctor, and I don’t know all about your dad or his particular case, but, Kerry, I will tell you that I don’t believe this is necessary!

A lot of people on this board take methotrexate, but I am not sure exactly what it’s for. I have spent a little time looking it up, but still haven’t found exactly what I was looking for. If it’s for joint pain, why are they cutting your dad’s dose down? Is the drug hurting your dad somehow? Could the cutting down of the dose be causing your dad’s pain to increase? You know, the doctor would want to know if your dad’s pain was increasing as the methotrexate dose goes down. So, if the doctor hasn’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, I’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 can’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