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bee781

Not yet diagnosed, but frightened

28 posts in this topic

Hello Bee781

 

I can't help with the rash either but I did want to encourage you that things do get better. It is possible to adjust to having scleroderma and still have a great life it's just a different one to the one you expected. Adjusting takes time and involves tears :crying: , anger :angry: , frustration and as many hissy fits :temper-tantrum: , as many as you need. During my first year my emotional range went from being asleep to hysterical, there was very little in between!

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Bee781

 

Like the others said, don't worry about being sad, mad, or anything else in between. We've all been there, scared to death too, it's perfectly normal and called fear of the unknown...but things do settle down believe it or not...sometimes it's just hard to see the forrest for the trees as they say. Try to remember that sometimes it takes years to get any type of diagnosis with these autoimmune diseases. I guess what I'm saying is that you need to do the best you can to eliminate your stress/fear because it will make you lose sleep, give you anxiety, and compound even the littlest of things...at least that's how it worked on me (not fun!). As usual, Amanda has summed that up nicely for us! We're so lucky to have her and the ISN Team here to help us!

 

I don't know anything about your rashes either, sorry....I get rashes on my face if I walk outside and it's cool...doctors have no idea what causes that for me...been going on for a couple of years now. I don't need any blush for a couple of days when I go outside now which is how long mine lasts (days). Only thing this time of year is that I have Raynauds kicking in now...so I don't want to walk outside anymore because it's too cool/cold...so my plan is to stock up on more blush ;) ....moral of my story is that maybe it won't mean a thing for you either, let's hope? :)


Sending good wishes your way!

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Hello Bee,

 

This is really a scary time. I surely went through some high anxiety moments after I got my diagnosis in 3/09. Hear this though: You will be okay. You can have a fabulous life even if you have some symptoms. There are tons of work arounds and you have come to the right place to hear how everyone works around the things that don't work as they should. One of the most important things is to get some support in your life. The forum is great, but someone local who can reach out and touch you is really important. Also, you might consider finding a therapist who you can really connect with. It will certainly help with building coping skills. You might find that the rashes are anxiety induced. Happens to most of us and is just an external sign that something internal needs to be tended to. But you should also talk with your doctor about it. Remember that your life is not over, in fact, far from it. You will find folks on this forum who have lived with this disease for decades and are still jamming on through their lives. Never give up!

 

Jill

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Hi Everyone, here I am still undiagnosed. Today I found a teenie tiny capillary at the base of my finger nail. I am so hyperviligant of any new change in my body. I fear I am headed for scleroderma. My worst symptom lately is this anxiety of not knowing, otherwise I just have a lot of fatigue and the odd ache in my muscles and joints.

 

I'm spiralling downward more and more every day. Please, if anyone who is living with this disease can ease my nerves and tell me that it's not the end of the world and that I'm not going to die soon. The best way I can describe how I feel is I feel like I have a ticking time bomb strapped to my body and there's nothing I can do to get rid of it.

 

Sorry If I'm scaring anyone. I do have supportive family and friends but I dont want to put this on them. I didn't know where else to turn so I came here. My doctor knows I'm sad and prescribed anti-depressants but I refuse to take them. I'm angry that I have to take anything. I've never even taken a tylenol for a headache.

 

Please Send good thoughts my way. Thanks for listening. I've noticed everyone here is really sweet.

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Hi Bee,

 

I'm very sorry you're still having a terribly rough time of it. As it happens, a basic rule of thumb is that if we feel like we are still not on an even keel (or at least a lot better) after two weeks of learning about (or suspecting) a new diagnosis, then we should seek professional help in adjusting to the situation. A good first stop is to our primary care doctor, who can evaluate us and then refer us to specialists, if needed.

 

Online support groups like this are fine, but of limited help when it comes to more than the usual upset over diagnosis (or fear of a diagnosis.) I'd say most of us would agree that anxiety, depression or fearfulness about a possible diagnosis can be far worse than any actual illness. So it is very important for all of us to get and keep things under control, emotionally as well as physically.

 

I hope you visit your primary care doctor right away. And if you feel that you are in urgent straits, then please go to an emergency room. We all care very deeply, but since we aren't professionals (of any sort), we can't help more than to provide sincere encouragement for seeking in-person counsel. Then, once we have our immediate situation under better control, we find we can benefit so much more from the general group support, such as on the forums.

 

Will you seek some assistance, locally, right away, and let us know how things are going for you? I'm sending some flowers to comfort you, in hopes that you feel better soon. :flowers:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hi Bee ,

 

PLEASE....reconsider the anti-depressant medication, for now anyways. IF you do have sclero or pre-sclero conditions, you may be susceptible to autoimmune depression. I know about it because my own son was diagnosed with it. The same autoimmune attack against other parts of your body can affect your brain, too. Your chemical levels in the brain get out of sync, hence the depression. Now is not the time to decide against being medicated --- you don't want to spiral down into a deep hole.

 

If you want to fight this disease, you are going to have to learn to like your meds because they can put your body back in sync/remission. When the time comes, you're feeling fine about your life, and can handle the symptoms, then you can wean yourself off the depression meds. Take a deep breath and chime in often. The people here are great and can offer lots of advice. Also, confide in one or two close family members or friends --- that, too, may help.

 

Take care, Everyone.

Margaret

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Hello Bee

 

There's no shame in taking anti depressants if you need them and if your doctor suggested them then presumably the opinion is that you need them.

 

Now no one can say how any one person's sclero journey will pan out or how the disease will progress but what I can tell you is that lots of people live long lives with sclero. I know someone who had a renal crisis at year 3 which was so bad the doctors told her family to say their goodbyes, that was some 25 years ago and she's still very much alive and kicking, I know I spoke to her today! I also know someone who has had it for 10 years and there are other long timers on this forum.

 

If you do get a sclero diagnosis it is not automatically game over.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi, Bee -

 

When I was first diagnosed with Interstitial Lung Disease (only later was the diagnosis of scleroderma added), I went to the internet for information and totally freaked out! The information on the few sites that are available are based on limited studies and give you the impression that no one survives for more than a few years with these conditions. Well, as the posters before me have said, it just ain't so. There are so many variations to the scleroderma and other autoimmune themes that any kind of generalization is really difficult. Each person's reaction to treatments is different, and the severity of symptoms varies just as much. As Amanda said, the diagnosis, whatever it may be, does not mean "game over" at all - it just means you'll be that much better equipped to fight. By the way, I'm on an anti-depressant but I started taking it before I was diagnosed. I was probably a little depressed because of some chemical changes that were occurring that I wasn't even aware of. Anti-depressants are definitely my friend - just another weapon in my arsenal!

 

Hang in there, and keep asking questions. I've gotten some great answers on this forum and I've only been on it for less than a month.


Sharon T.

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I agree with the others Bee, there is absolutely no shame in taking the medication for depression.

 

In the meantime, try to remember that your mental health needs looking after too and it takes a hard hit when you get scary news (it's called gripping fear, and I know it's hard to believe now but that too will settle down for you, it's just hard to see past it when you're so scared). After all, that fear causes the lack of sleep, lack of appetite, adds anxiety/stress, tears, etc, which adds to more problems. Trust me, it can have you thinking you have some symptoms that you really don't. And, of course, stress can make anyone sick all by itself.

 

You may only need it for a little while or a long while, not that it matters how long you need it for. And like they said, then you can maybe wean off of it. But I strongly suggest only doing that hand in hand with your doctor. Cutting back should be a decision made by both of you. If you feel you're ready and he/she agrees, then do it but if the doctor thinks you should take it a little bit longer, then be sure to do that to. You will know when you're ready to discard it if that's the case.


Sending good wishes your way!

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Hello and welcome Bee....

 

You've been given LOTS of GREAT advice by others on here. Let me add just a little of my story. I began the diagnosis hunt a little over 10 years ago with the "you have this, no wait, you actually have this, etc". My first ANA was 1:1680 with a centromere pattern. This went on for a few years until I finally found the right doctor for me that was able to put 2 +2 together. When I first got the sclero diagnosis, I did the same thing everybody does, searched the internet and had the wits scared out of me. I cried for days, just knowing the end was near.

 

Well, I found these guys and this site and they have been the greatest source of info and support. I also have managed to assemble a group of doctors that work together on me. Having a good medical team is a MUST. Now, included in my medical team is both a psychiatrist and therapist. I am on meds for the depression and anxiety. It took trying several before we found the right ones for me. Seeing a psychiatrist and therapist and admitting and accepting the fact that you need help in those areas is NOTHING to be ashamed of. Scleroderma treats each of us differently, but I REFUSE to let it take me down without a fight. I did have to retire on disability 5 years ago and went through a 2 year battle with social security (but I WON). Just remember, you are not in this proverbial boat alone. There are many of us here rowing right along with you. Any one of us will help you in any way we can. Don't be afraid to ask for help.


Peace :)

Barbara aka relicmom1

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Hi Bee ,

 

I was thinking of you today because of my son's *issues* with depression. Gareth is now 21 years old and has been seen by a regular, pediatric psychiatrist since he was 10 years old because of his autism/OCD behaviors. When he developed the symptoms for Sclero, even his regular psych doctor didn't pick up on the depression until he consulted a fellow psych doctor who specialized in autoimmune induced depression. Like Barbara said, it may take a couple of tries with different meds to get the right one to work for you, but it can make all the difference in the world on how you look at life and how you will fight this disease. A psych doctor once told me that each psych med out there only works on 10-20% of the population, that is why there are so many of them and why the first one may not work for you. Don't give up....keep trying.

 

Take care, Everyone.

Margaret

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Hello Bee,

 

I am in the same situation as you. I am not yet diagnosed, but have many of the listed symptoms for Scleroederma. I also have taken very little medication through out life. I agree that this is a very scary time. Please keep us informed. Grim247

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Hello Grim247

 

Excellent name by the way and welcome to the forum!

 

Awaiting a diagnosis is very difficult particularly when you are living with a bunch of symptoms that you long to give a name to so they can then be treated.

 

Have you been trying to get a diagnosis long, I know many on this forum who waited years. Scleroderma can be tricky to diagnose, it has many different symptoms that can present at different times and everybody experiences it differently. Of course you already know this!

 

Take care and keep posting


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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