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Feeling Overwhelmed and Scared

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#1 Princess41463

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Posted 27 August 2013 - 01:50 PM

Hello,

I am new here.  I recently had blood work done due to severe pain in the middle joints of my left pinky and thumb that has not subsided in months.  My results showed the following:

 

Segmented Neutrophils    37  L

Lymphocytes                    54 H

ANA Screen                      Positive

  ANA Titer                        >=1:1280

  ANA Pattern                   Centromere

 

I have an appointment with a Rheumatologist in October, that seems like forever away and they say it will be another 6 weeks after that to get the results.  I don't even know where to begin on how I'm feeling about this.  I'm 50 years old, I'm post menopausal after having my uterus removed about 10 years or so ago, I still have my ovaries and am on bio identical hormone cream for estrogen and testosterone. I have stiffness in my ankles and legs when I first stand up that works itself out as I walk.  I have TONS of muscle tension in my entire body. I am sleepy ALL THE TIME but I wake up constantly at night and get horrible sleep.  I either have to go to the bathroom two or three times or I'm hot and sweaty - and each time I have to get up I end up laying in bed for the next hour trying to fall back asleep - thanks to my A.D.D.  My skin is dry, but it's worse on my shins - the skin there is very shiny and looks like aligator skin.  I was hardly growing any hair there (maybe 10 hairs per leg) until I got sunburned in Costa Rica and my legs peeled, now my hair growth there has tripled - that's how thick the skin on my shins was. I have ZERO libido. I feel depressed for no reason. I can't focus at work and don't want to go or do anything.

 

Does any of this sound familiar to anyone?  What could be wrong with me?

 

:crying:



#2 Amanda Thorpe

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Posted 28 August 2013 - 02:50 AM

Hello Princess

 

Welcome to the forums but I am going to have to dash your hopes early, as none of us here are medically trained we can't tell you what you have/don't have and the relevance of your test results above the obvious. What we can do is offer you support and this is something people here are first rate at.

 

Do you think you could be tired because you are not sleeping properly and did you know that it's actually within normal to have to pee up to twice a night?

 

I note that you're working which I assume means your health issues are not debilitating which is great and will hopefully continue. Really all you can do is wait and see what happens at your October appointment but there is nothing to be gained by worrying in the meantime, you can't change the outcome whatever it will be, in fact it will make the time drag if you worry! Do you enjoy work, if so maybe concentrate on this in the meantime, that would be far more productive and beneficial for you.

 

What are you expecting from the appointment? You might find it helpful to take someone with you as it's hard to remember everything that is said, often the mind goes blank a soon as you exit the exam room! Also make a list of questions/matters you want to discuss should the mind blank when you enter the room!

 

Have a look at our videos, difficult diagnosis and diagnosis of scleroderma, it is possible to have blood tests positive for scleroderma but never develop any symptoms and have symptoms but negative blood work. Medical history and physical examination are key so again, until your appointment don't worry about what you may or may not have.

 

Hope this helps and take care.


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#3 Joelf

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Posted 28 August 2013 - 10:14 AM

Hi Princess,

 

Welcome to these forums!

 

I'm afraid I can only reiterate Amanda's advice; although telling my medical team how to do their jobs is one of my little pleasures, I have no actual medical training (apart from a now out of date first aid certificate! ;) ) It would be very difficult to advise or diagnose you under those circumstances.

 

Amanda has given you some good advice regarding your appointment with your rheumatologist in October and I do hope that it goes well and your fears are unfounded.

 

Kind regards,


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#4 Shelley Ensz

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Posted 28 August 2013 - 01:46 PM

Hi Princess,

 

Welcome to Sclero Forums!  I'm sorry you have some health issues now and hope that you feel a bit better soon.

 

It's good that you are going to see a rheumatologist. But in the meantime, I hope that you work closely with your primary care doctor to address any issues that they can handle.  For example, ask them to screen you for depression and treat you for it, if necessary.  It might just be that you are feeling stressed, from worry about scleroderma, and not that you are seriously depressed in need of treatment.  But that is not your decision to make, nor mine, either.  However since you say you are feeling depressed, you might feel a lot better if that possibility was properly tended to.

 

It also might be that you have some sort of sleep disorder. And that could easily make you feel bad all the way around. Neither depression nor sleep problems are issues that your rheumatologist would be inclined to address, so you may as well pursue these with your primary care.  Also, neither depression or sleep problems "count" towards a scleroderma diagnosis so you just want them addressed, and treated if need be, as both issues would greatly impair your ability to deal successfully with ANY sort of ailment or chronic illness.

 

You can also discuss with your primary care the possible causes of your blood work.  Are there more tests they can run, to narrow down possible causes?  Maybe even a repeat test might show that they have magically resolved themselves, which happens to be extremely common and may be a huge mental relief for you, should you be fortunate enough for that to occur.

 

In other words, don't put your health on hold until October!  March forward with plans to tackle what you can tackle now.  Since you mention poor sleep, muscle aches, stiffness, and depression, you may also ask your primary care doctor to screen you for fibromyalgia.  Fibromyalgia is very common by itself and also can occur along with many other illnesses, including autoimmune diseases. 

 

And again, these things are not listed symptoms for the diagnosis of scleroderma, so you won't get any bonus brownie points from the rheumatologist for suffering with them in the meantime. You might possibly even score a diagnosis of fibromyalgia before you see the rheumatologist, and then be able to also discuss fibromyalgia treatment options with them.  And if by chance fibromyalgia is ruled out by your primary care, that is also something for consideration.

 

While you are waiting, I do see hope for finding some ways to improve your health a little bit, at least enough to make it a little easier to get through each day. Also cut yourself a break because worry can drag us down very quickly and easily, interfering with our sleep, our self-care, and our energy.  Being worried about possible scleroderma is no small thing!  It can quickly develop into a major anxiety for those who are prone to worry in the first place.  If that's the case for you, please talk to your doctors about that, too.

 

In other words, work on focusing your primary care doctor's efforts on ways that you could begin feeling a little better TODAY.  You don't have to wait for months just to have a little ray of possible hope!  Most people, even with severe forms of scleroderma, still manage to be happy and productive in their lives. We can find joy and happiness almost everywhere we look, from the array of books we've read in waiting rooms to the coffee shops or restaurants we've visited before or after. We indulge in hobbies for a healthy outlet for anxieties.  We try to simplify our homes and lives to make them more enjoyable and easier to manage. You have a lot to learn how to look forward to, hanging around this crew!

 

At minimum, in my personal opinion, you deserve a better night's sleep and a few health improvements to look forward to.  Please let us know how you manage to pick up the pieces to find a few health improvements, while we all wait for more information, along with you.

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
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#5 Sweet

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Posted 28 August 2013 - 03:35 PM

Hi Princess,

 

Welcome to Sclero Forums!  I'm sorry you have some health issues now and hope that you feel a bit better soon. You've already received some great information, I just wanted to give you a big warm hug. :emoticon-hug: I know how scary the whole process can be, and believe me it can be a process. So sit tight, try to take one thing at a time, and that will help alleviate some anxiety. 


Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)





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