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Flare up this weekend - thoughts on diagnosis

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#1 Ricky Harris

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Posted 25 February 2013 - 01:52 PM

I have tried various doctors over the years with no diagnosis. One of the positive tests I had in the past was for scleroderma but then it wasn't positive the next test so my primary care physician said it was probably a fluke. This past weekend I had what I will call a flare up. These flare ups are increasing in number and this recent one scared me so I thought I would post here to see if someone may be able to point me in the right direction. I'm 38 and in good shape physically.

I tanned on Wednesday and Friday (needed for work...not something I do for personal asthetics) of this past week and felt particularly tired Wednesday, Thursday and Friday and need a nap after work each day. Friday night I felt very weak and went to bed early. Saturday morning I was very fatigued, even more weak and with pain throughout my body but had to drive my son to his driver's ed class. I got back and went to bed. When I woke up around noon I was in intense pain from my head to my toes. My joints, bones and skin hurt. My skin felt like someone was cutting me with razor blades. Every joint in my body felt like someone had pounded on each one with a hammer.

 

I have experienced this in the past, including a month or so ago, but I always thought it was an intense flu because I may have had a minor cold or got one after the flare up. This time there were no cold or flu symptoms so it got me worried. No over-the-counter medication affected the pain, even at double doses. The pain didn't start to subside until Sunday night. Today is Monday and while my joints are still painful, my overall pain is nowhere near what it was. As for triggers, besides the tanning, I had one alcoholic beverage (an extreme rarity for me), I had worked out on Friday and I am under a fairly decent amount of stress that I try to control/reduce as best I can.

 

Even though I am quite strong (I am a former powerlifting champion and try to stay in decent shape), I have overall fatigue and have days where I can barely climb a set of stairs. Over the years, my blood work has been all over the place. I'll be high one test then back to normal the next. I've had frequently high liver enzymes and BUN - BUN/Creatinine levels, shown positive for HEP C antibodies, positive for scleroderma, had high B vitamin levels and high iron levels indicating hemochromatosis. I don't take a multivitamin normally because they affect my sleep so the high numbers aren't from supplements. I've had diarrhea my whole life, particularly after foods with fructose. My hands and feet are always cold. I don't do anything other than shower without having at a minimum of socks on my feet. Overall, I am very sensitive to cold and get extreme shaking when others are comfortable. I used to work in an office and had to wear a jacket and have a heater at my feet. I've had a distended belly my whole life and sore internal organs upon palpation. I don't seem to have any telltale signs of scleroderma or lupus - no rashes or tight skin. I do seem to be getting more and more small white spots over my entire body, about the size of freckles, that seem waxy or hard in nature but is that from getting older? I don't know.

I am a single father who doesn't have insurance. I have to be there for my son since we have no family within 800 miles. This episode this weekend scared me and really made me realize I need to figure this out, once and for all, so that I can figure out what I need to do to prevent flare ups and increase my overall energy so that I can work more and be there for my son. If anyone has any thoughts or resources, I am all ears. I'm thinking of trying to get charity care and seeing a rheumatologist but I don't know if that is the right doctor for my issues. Again, any direction you may have is definitely appreciated. I've seen many doctors in the past who throw up their hands and say they don't have a clue. I get frustrated and stop seeing doctors until I'm feeling super rundown and then try all over again with the same results. The only specialists I've seen in the past were gastroenterologists. A huge thank you to everyone for your input.



#2 Shelley Ensz

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Posted 25 February 2013 - 07:30 PM

Hi Ricky,

 

Welcome to Sclero Forums.  I'm sorry you have concerns about illness.  Please keep in mind that I have no medical training at all, and verify everything I say with a reliable medical source.

 

It's my understanding that light sensitivity, if indeed that's what you are referring to, is more of a lupus-y thing than a scleroderma-y thing.  So you may find more knowledge about this  on a lupus forum.  With lupus, sun exposure can cause rashes.  If you get a rash from sun exposure, you can go to a dermatologist right away and get a skin biopsy done, which could show whether or not the rash was caused by lupus.  In the meantime, since you need to have a tan for work, you might want to consider self-tanning products instead.

 

Also keep in mind that there are vast differences in how people refer to fatigue. If you are working full time, working out, and taking care of a child and household, you may be experiencing sheer exhaustion.  The difference between fatigue and exhaustion is that with exhaustion, you will eventually feel better once you recuperate by getting the rest (sleep and naps) that your body is demanding from you.

 

With fatigue, such as can be caused by scleroderma, you can sleep and nap until the cows come home but not ever feel any better. Also, fatigue can make it impossible to put in a full days work, or even to attempt a workout, which makes me think that you might be burning the candle at both ends and then suffering weakness, tiredness, and dismay when it catches up to you all at once.

 

There's a WebMD article on Weakness and Fatigue that explains a little of what I'm trying to say. On the second page, it says in part, "A visit to a doctor usually is needed when fatigue occurs along with more serious symptoms, such as increased breathing problems, signs of a serious illness, abnormal bleeding, or unexplained weight loss or gain. Fatigue that lasts longer than 2 weeks usually requires a visit to a doctor."

 

What you described, in this particular instance, lasted less than two weeks and it did not seem to be associated with breathing problems, etc.  So it may have just been "one of those things".  If you have continuing concerns though, you should see a primary care doctor who could advise you as to whether or not further testing is necessary at this time. 

 

In the meantime, please read up on exhaustion and see if what you are describing falls into the general category of fatigue or exhaustion, as many people -- probably nearly everyone! -- uses the terms interchangeably, until they've hit the wall with one or the other and have been forced to learn the difference.

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
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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.

#3 Joelf

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Posted 26 February 2013 - 12:33 PM

Hi Ricky,

 

Welcome to these forums!

 

I'm sorry to hear that you've been having so many worries about your health; like Shelley I have no actual medical training, apart from a now out of date first aid certificate, (which is quite handy for splinting broken legs and removing splinters from fingers etc. but not much use for anything else!)

 

As you can probably tell from the blood tests you had, the results can be inconclusive for Scleroderma and any diagnosis should be made on the clinical symptoms, rather than the results of blood tests alone. Perhaps if you should have a repeat of the symptoms you've been experiencing, it would be a good idea to visit to your doctor to determine whether you should have any further tests to determine the nature of the problems.Your doctor could then perhaps advise if you need to consult a rheumatologist.

 

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#4 miocean

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Posted 26 February 2013 - 07:08 PM

Ricky,

Since none of us are doctors we cannot give you a diagnosis. Without insurance you are really in a bind because scleroderma presents differently in each person and is difficult to diagnose. Having been one of the unfortunate ones who had End Stage Renal Disease, your creatine and BUN numbers concern me as I wouldn't want you to go into kidney failure. You didn't mention your blood pressure, make sure it is not high, that can cause your kidneys to fail.

The white spots can be from tanning, I get them too. They can also be from a skin fungus, I had that, too. But I cannot diagnose you.

Please look into charity care in your area. There is no "right doctor" for multiple issues, you will end up going to a slew of specialists.

Last words of advice, make a list of all of your symptoms before you go to the doctor. Start keeping a record with copies of all of your doctors, labs, and tests. Try not to be stressed, that is bad for anyone. I know you are scared, anyone would be in your situation. You need to get some answers.

Please continue to post on your progress.

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#5 Shelley Ensz

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Posted 26 February 2013 - 08:18 PM

Hi Ricky,

 

I want to clarify my clarification. :emoticon-dont-know:

 

I didn't mean to say that you are experiencing exhaustion rather than fatigue, which is sure how it sounds to me on reading it over. :blink:

 

Rather, that to find the most appropriate care for yourself, it is important to distinguish the two so that you know what kind of self-care is in order, and what type of doctoring you might need.  Since you don't have insurance right now, you might want to take the time to research the differences between exhaustion and fatigue, between feeling cold all the time versus attacks of Raynaud's, and so on and so forth. People can feel very cold all the time but not have Raynaud's.  People can be extremely weak and tired from exhaustion, but not have fatigue. 

 

And people can also feel cold all the time and have Raynaud's, and suffer from exhaustion and have fatigue.

 

If you study enough to find out that you do, indeed, have Raynaud's and not just feeling cold all the time, then document the Raynaud's.  Take a picture when you have an attack.  Document the number of attacks that you have every day, and also what triggers them.  Then you can go to your doctor, he can run tests and verify very matter-of-factly that you do, indeed, have Raynaud's.  They can use any number of methods, from dunking your hands in cold water to watch them turn colors to running very sophisticated vascular lab testing that will give a readout of the temp for every finger.

 

When you do get insurance coverage, you might want to consider seeking out an internal medicine specialist for your primary doctor.  They are great at diagnosing more complex things, and also at taking complex health issues and breaking them down into manageable steps. 

 

Along the way, work very hard to always keep an open mind.  You may just naturally zero in on one or two illnesses that you are most familiar with, but your doctor will be considering hundreds and thousands, presuming you may have any medical or mental illness or combination thereof known to mankind, or that you may be perfectly healthy but suffering the accrued effects of stress and aging and multiple aches and pains from prior injuries, which can really add up and be very substantial, all on their own. You might be thinking lupus, or scleroderma; he might be thinking, aha, this is the worst case of undiagnosed diabetes or nearly-drop-dead heart disease or walking pneumonia or sleep apnea or fibromyalgia that he has ever seen.

 

I wouldn't dare hazard any sort of guess as to which way it could go or will work out!  I am not a doctor, I have no medical training at all; I'm not even qualified to diagnose a hangnail. I'm just saying to figure it out, you might want to begin by first clarifying your precise symptoms and then perhaps seek the advice of a great internist, who could advise you as to whether or not you need to see a rheumatologist or any other specialists.

 

You need to have a place to start.  The first place is to start exploring your health insurance options.  Find out exactly what it would cost for one month of coverage.  You could always go to the doctor on the first day of your coverage, get all your tests done very quickly and drop the insurance at the end of the month if it turns out you don't have any chronic illness to deal with.

 

:emoticons-group-hug:


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.

#6 Ricky Harris

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Posted 26 February 2013 - 10:17 PM

Thanks to everyone for your input. First off, is it possible to get insurance out of the blue, just for a month? I've never heard of that but would be interested. I spent $120 and went to the clinic to get a referral to a rheumatologist. I won't be able to get in to see one until April at the earliest. Luckily though, a doctor friend of mine texted me out of the blue today. I told her what had happened and she said she would help me. That will help me in a variety of ways.

I learned today that my biological mom had lupus so there is some family history of that. Not sure that really matters much though. May make it more likely that I have lupus than sclero, but that is just a guess. As was mentioned, the sun/tanning issue is more associated with lupus so that is one more potential indicator that lupus is the cause and not sclero. Besides my previous positive ANA test for sclero, I thought sclero was more likely due to my hypersensitivity to cold, especially in my hands and feet. After more research I'm not sure that is as indicative as I had thought.

As for the fatigue and weakness, I have had both and started going to my primary care physician for a solution over 7 years ago. I get exhausted, but that isn't a huge problem because I recognize it and get more sleep and it goes away. The fatigue and muscle weakness have been constants in my life for a decade or more. I am dead set on getting all of this figured out this time, with or without insurance. I definitely want to reduce or eliminate the painful flare ups, but having energy, a clear head, and enough strength to climb stairs everyday are also hugely important. I am hopeful that I'll get things figured out this time.

Thanks to all for your help! You are awesome!

#7 Shelley Ensz

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Posted 27 February 2013 - 10:14 AM

Hi Ricky,


If you can get health insurance, I don't think there is usually anything in the contract that prohibits you from cancelling it at any time. But read the fine print yourself, as I am not a lawyer or a doctor or even a certified first aid provider.

 

The real kicker is that some diagnoses may make you ineligible for coverage, until the full effects of the new insurance laws kick in. Thus you absolutely would not want a diagnosis or strong indication of lupus or scleroderma (such as positive antibodies) in your medical record or in publicly accessible places until you have solid health and life insurance coverage.

 

That is why I put finding health insurance as a priority for you, prior to any doctor visits, if you want to further explore any possibilities in the area of connective tissue diseases. And yes, you sound like your symptoms lean a bit more lupus-y than scleroderma-y (however I am a nobody and have no medical qualifications at all for either disease) but of course you are welcome here; we just may not be of too much help for specific lupus-y questions. 

 

Bear in mind that since your mother had lupus, you are much more likely to have antibodies and a few symptoms of lupus or any other autoimmune disease, but you may not ever develop any full-blown disease.  About 50% of people with any symptoms of connective tissue disease never go on to develop a full-blown illness, which is both the good news and the bad news all at once; good that progression is not always inevitable but bad because it can really hurt to sit on the fence forever.

 

We have info about that on our main site but I forget exactly where at the moment.

 

:emoticons-group-hug:


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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