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bee781

Not yet diagnosed, but frightened

28 posts in this topic

Hello everyone, I am 27 years old. I am here because in the last year I've experienced mild joint pain/muscle aches and terrible fatigue. My ANA was positive at 1:640 with a nucleolar pattern, which I understand is typically indicative of scleroderma. All other tests were normal, including the SCL-70. I have never had Raynaud's, calcinosis or any skin hardening/stretching. I am terrified about getting scleroderma in the future. Up until this year, I was a healthy person with no real issues. I was sent to see a rheumatologist who said he didn't have enough evidence to diagnose me with anything yet and that we should "wait and see."

 

Is there anyone on this forum who has scleroderma where the symptoms started off as joint pain and fatigue, but without the Raynaud's and skin hardening? If so, how long after the joint pain and fatigue started did you notice changes in the skin?

 

Seeing as my ANA was pretty high, does this mean I will definitely go on to develop scleroderma? I am terrifed and cry a lot over this. Thank you to anyone who answers.

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Dear Bee,

 

Welcome to the Sclero Forums! I'm so glad that you did find us and have posted your concerns. There are other members of the forum that have been through similar experiences as yours. One thing to know about those crazy antibodies is that since most of the time they are just biomarkers and not a definite diagnosis, people can walk around with them their whole lives and never get sick. So it's impossible to say if you will get scleroderma or not. Many doctors use the antibodies as a "heads-up", but wait until specific symptoms start to develop to make a diagnosis. It sounds like that is exactly what your rheumatologist is doing.

 

Because you do have joint pain/muscle aches and fatigue, I would keep an eye on things and keep written track of any strange symptoms. In looking back my first symptom was a swollen, painful knee. Over the next 3 months, my endurance level started to drop and fatigue began to set in. It took 6 months to develop Raynaud's then things moved very quickly at that point and I was diagnosed 2 months later. Some people have Raynaud's for 5 or more years before seeing anymore symptoms and some people have primary Raynaud's meaning, they never develop Scleroderma. It's all a big guessing game. So it's very possible that you will never develop scleroderma; however, just be aware of how you feel and stay in touch with your rheumatologist.

 

Please continue to enjoy your life and reduce your stress level as much as possible. Stress is bad for any disease and can actually make us sick. So please do the things you enjoy as much as possible. We're here for you when you need support or answers. We'll supply whatever answers we can, but remember, we aren't doctors, just a great group of well-experienced scleromanians (one of our members came up with the term a while ago.)


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Hello Bee

 

Welcome to the forum!

 

All I can really do is echo what Janey has already said, you may never develop scleroderma but do keep an eye on things. It is a difficult place to be in though because you need to balance being aware of any changes without becoming obsessed with every ache and pain. Keeping in touch with your rheumatologist is a good idea because even if you don't get a sclero diagnosis after a few years you'll hopefully get birthday cards! :lol:

 

Seriously though blood work isn't everything, I have systemic sclerosis, a rheumatic disorder, and yet my ANA is negative and my rheumatoid factor is normal. According to my blood work there's nothing wrong with me...I'm a scleroderma wanna be...a malingerer...needless to say my physical symptoms say otherwise often and very loudly.

 

Do try to relax and not worry, even if you do get a sclero diagnosis in the future it's by no means game over. Do I have scleroderma...most definately. Do I have an excellent life...most definately! :emoticons-yes:

 

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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Hi Bee,

 

I'm sorry you are having some muscle aches and fatigue, and are so worried about scleroderma due to the antinucleolar antibodies.

 

Please keep in mind that I'm not a doctor, I have no medical training at all. But as I understand it, about 20% of all lab tests are erroneous. On top of that, even an antinucleolar antibodies, in themselves, do not mean that you will necessarily ever develop scleroderma or similar symptoms. I really wish your doctor had taken the time to thoroughly explain this to you, as it would have prevented and avoided an awful lot of angst!

 

In fact, because antibodies can be so all over the place, positive in people without any disease, negative in people with full blown disease, they are not used as any part of the diagnostic criteria for scleroderma. Scleroderma is based only on symptoms, especially things like tight skin, Raynaud's, and pulmonary fibrosis; none of which, knock on wood, you have right now. Or yet. Or whatever.

 

In the absence of specific symptoms, muscle aches and fatigue are very general symptoms that are extremely common in the general population. Both muscle pain and fatigue can be caused simply by depression or anxiety, as well as a zillion other things.

 

So, it would be way too early in the process to worry about scleroderma, specifically. And it would be extremely important to get evaluated and treated (if necessary) for anxiety or depression (whatever, that sort of stuff) because not coping well emotionally is very, very hard on the immune system. And right now, you want your immune system to work the best it possibly can, to hopefully derail anything.

 

About 50% of people with a few symptoms of connective tissue disease, and even some positive antibodies, never go on to develop full-blown autoimmune disease of any sort. So, odds are 50/50 that this is the worst it will ever be for you, and even that things might clear up entirely.

 

Joining our forum was a great step in learning how to cope with this. You'll meet many wonderful people here who have been there, done that, and can help assuage your concerns.


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

 

You've received great advice already...not much more I can add to that except to not read everything on the internet (really bad thing to do!). I suggest that you stay here for factual information and to ask your questions, if you have any more. There's always someone here in the 'know' with true experiences to share.

 

As Janey and Amanda already said, it is even possible you can stay the way you are and never progress any further, no one knows. These autoimmune diseases are never predictable which is why your rheumatologist is doing the 'wait and see'...there is no other option for him/her to do that I can think of to be honest. I agree with the others, be sure to continue to be monitored in case any other symptoms should arise, that way, you stay on top of things if you ever need to be. The not sleeping and stress is really bad for anyone...stress can make things so much worse. I know it's hard when you're scared but try to take one day at a time, one thing at a time (I know, much easier said than done!)...been there, done that too.

 

Try to remember that bloodwork alone cannot make a diagnosis...you have to have other physical symptoms of the disease (does not sound like you do yet, that's good news).

 

Take care.


Sending good wishes your way!

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Hi!

 

I'm in just about the same boat as you, except last year I had the Raynaud's with finger ulcers. ANA positive (1:640 too), nucleolar, but nothing else on the blood tests. I was technically diagnosed with CREST scleroderma in June, with the only symptoms being Raynaud's and some heartburn/feeling like something in my throat. Now I have stiff fingers and joint pain.

 

But still, the rheumatologist isn't quite sure it's CREST, because nothing else showed up in the blood tests and I don't have any other specific symptoms to be able to point the finger at it. I had another blood test done a couple of days ago, so we'll see if anything else decides to show up.

 

Definitely don't worry right now (I know, easier said than done!). But one thing that made me feel a little more positive was that he said diffuse scleroderma (the more serious kind) progresses quite rapidly, and he said because I don't yet have any skin changes, it wouldn't be the diffuse scleroderma. So if what you have isn't progressing quickly, then hopefully that also means it's not diffuse scleroderma.

 

Wishing you all the best!

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Hi Bee ,

 

It's been 3 years this month that my son was diagnosed with sine Scleroderma based on positive ANA, + Anti-RNA Polymerase 1/111, esophageal dismotility, restrictive lung issues, loss of vocal cords, 20# wt loss, and major fatigue. He was only 18 years old and had no Raynauds or skin issues. After 9 long months of 'symptoms' he was put on Plaquenil, his symptoms have subsided and he is doing just fine. His diagnosis was switched to UCTD. Please, take a deep breath and keep with this group and you will learn alot. There are other young adults who may chime in also.

 

Take care, Everyone.

Margaret

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Wow, Thank you to all of you that responded! I feel a little better. I agree that I should stop reading everything I see on the internet. Most of it is really scary and not helping my fear. I will keep everyone posted on how things progress. Hopefully things never get worst than they already are.

 

Margaret, was your son's ANA pattern nucleolar?

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Hi Bee ,

 

Yes, my son's ANA was positive (forgot how high), speckled pattern, diffuse cytoplasm and the Anti-RNA Polymerase 1/111 has been positive 3 times and keeps getting higher, but there is little info as to what that 'means.' Right now, though, he is doing very well UCTD/Sclero wise and his ANA is negative. When he was first diagnosed and, before finding this site, I had visions of him dying by that holiday because everything on the web was so negative! Find yourself a good rheumatologist that will listen to you about your symptoms.

 

Take care, Everyone.

Margaret

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Hi Bee,

 

How're you going?

 

It's such a tricky time, isn't it. So much new information, so many unknowns, you hear too many horrible stories and you wonder if any might end up as yours.

 

I found it a very stressful time, waiting for a diagnosis. You sometimes just have to wait for symptoms to appear.

 

Hopefully your anxiety will lessen soon as the shock decreases.

 

Sending you hope,


Charliehorse

 

Life is better with Jeeves and Wooster

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Hi Everyone,

 

I haven't been diagnosed with anything yet and doctors are still trying to figure out what's wrong with me. I posted a few days ago but forgot to mention one symptom...these random rashes that I've been getting, mainly on my hands. I know that people with scleroderma can also have dermatomyositis. I get these rashes everyday on my hands. They appear, stay for about 20 minutes or so, then go away. But then they return. I've never had a rash that stayed for longer than 20 minutes or so. Is this typical of dermatomyositis? I've looked at photos of DM rashes online and they seem to look like what I have but to a lesser degree. If anyone gets these rashes can you please tell me about them, whether you also get them on your palms, and how long they stay for. Did they start off gradually and then get worse over the months or have they been pretty consistent? I first noticed my rashes about a year ago. I had no other symptoms back then. They would appear for a few minutes, then go away. Now I notice them more often. My other symptoms are mild joint/muscle aches, terrible fatigue, numbness, tingling, tremors. My doctor will be running various tests and speaking to my rheumatologist again so that they can help me figure out what's wrong with me.

 

I am 27 years old and am so frightened, feel so alone, and really down about this. My life was perfect a year ago and I feel like my world has been turned upside down.

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Hi Bee,

 

I just wanted to share my story with you which of course is ongoing. Almost 4 years ago when my arthritis and fatigue started my ANA was 1:320 Nucleolar Difuse pattern and a high CRP, totally freaked me out.

 

Now a few years later, I have never had another ANA with Nucleolar pattern, it is always Homogeneous, but I have developed sausage fingers, dry eyes and mouth, and still have arthritis.

 

Two years ago my rheumatologist started me on a trial of Prednisone to help the arthritis which was bad by that stage, and then weened me off and put me on Plaquenil, which after about 6 months, helped my fatigue.

 

I am still tentatively diagnosed with Undifferentiated Connective Tissue Disease (UCTD). I hope it will stay at that, but in the meantime I have a wonderful rheumatologist who treats my symptoms regardless of what my blood tests say as sometimes they do not correspond with my symptoms.

 

I wish you all the best, you have found a wonderful place and wonderful people in this forum.

 

Kind regards,

 

Irene

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Bee, I am so sorry you are in that awful place of not having a definite diagnosis and not having a plan of treatment. I think that's when things are most scary.

 

Please don't ever feel alone. You don't need to - all of us who have joined the ISN Forums are here for you. You can log on any time of the day or night and post as often as you want. You needn't worry about worrying or what people will think of you for being afraid or sad that your life has been turned upside down. Every last one of us has experienced all of that and will continue to have these feelings from time to time.

 

I'm going to give you a link to the pages on Emotional Adjustment. There are a lot of articles on coping, anxiety, depression, and so on. There lots of good tips that will hopefully help you to get through this a little easier. Give yourself all the help you need. Think of yourself as your own best friend and take good care of that friend. wink.gif

 

Warm wishes,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hi Bee,

 

Welcome to the Sclero Forums. 9 years ago was my first indication that I had "something" going on. My ANA was double what yours is, and also had the nuclear pattern. It was about 3 years after that, that I test positive for Scleroderma. I have CREST. I have fatigue, joint pain and stiffness, problems with GERD, Raynaud's,telangiectasias, and a bit of curvature to my hands and toes. I have a bit of skin tightening on my chest. My Scleroderma has been slow in progressing. Has your doctor put you on plaquenil? It can slow the progression of your disease, help with fatigue, and pain.

 

Keep asking questions, that's how you get over the "frightened" part. Knowledge is power and once you have your questions answered, or you know you are not alone in this, coping is easier.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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I'm sorry I don't have any help with your rash. I do know what you mean about having your life turned upside down. It is scary to read about so many things that can happen. Not that any of them need to happen.

It's hard to know what to worry about and what not to worry about.

But you did say something good about your situation- your doctor is talking to your rheumatologist. That bodes well for them figuring out what is wrong.

 

:emoticon-hug: :emoticon-hug: :emoticon-hug:

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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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