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A Cold or A Flare up


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#1 scampie5

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Posted 14 November 2010 - 06:19 AM

Hi

For the last few days I have been feeling like I am going down with a cold but nothing has come of it, then I realised that my joints were hurting and my knees and elbow were red and hot. I was also getting hot sweats so I am wondering if I have had a flare up. Any ideas any one? lynn x

#2 Jeannie McClelland

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Posted 14 November 2010 - 12:44 PM

Hi Lynn,

Sure sounds like something was going on. Are you feeling better now and has the redness and swelling gone down? If it were me and it hasn't subsided, I think I'd see my general practitioner.

I've had a lot of occasions where I really thought I was going to get a stinking cold. You know, sore throat, itchy eyes, sort of hot and burning around the nose, and lots and lots of body ache, but as you say, nothing came of it. I've wondered if maybe I am indeed trying to get a cold but our super efficient, over-active immune systems zap it before it can take hold.

I usually try the lots of fluids and rest routine, give things a couple of days, and if I still feel bad, see the doctor. Of course, with lung problems, if I get a respiratory infection going and sees to be heading to the chest, I don't wait. I know we're all pretty much sick of doctors, but better safe than sorry, eh?

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#3 Shelley Ensz

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Posted 16 November 2010 - 01:50 AM

Hi Lynn,

I had a rheumatologist come down really hard on me once when I said I was not doing well at all, everything was acting up, and I felt like I was in a flare. I was told, in no uncertain terms, that "Scleroderma does not cause flares!"

Since I have a lot more going on that just scleroderma (I have multiple autoimmune syndrome, MAS) and I hadn't even pointed to scleroderma in particular as being the cause, I thought that was an interesting response to say the least. So I may have gotten the benefit of some insider rheumatology-talk about scleroderma. I'm not sure, but I think their point was that scleroderma gets worse, but not suddenly worse, such as flares that are well-known with lupus.

Regardless, I was much worse overall and he found a whole laundry list of issues. Years later I got the medical records from that visit, and he had written, "States that she is in a 'flare'!" As if I had just made a grand fool of myself.

So I really wonder if the medical community in general acknowledges "flares" in regard to scleroderma, although I have to say, I have no doubt that the patient community does. Clearly, there are times that I feel much worse than others, and when a whole team of symptoms will get together in an effort to lay me up, and then there are other times when, overall, I feel better, less fatigued, less pain, and more functional.

But, just so you know, some doctors (how many, I don't know), do not subscribe to the "flare" term in conjunction with scleroderma.
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Shelley Ensz
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#4 scampie5

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Posted 16 November 2010 - 05:21 AM

Hi Shelley,

I would not have liked to see that on my notes "States she had a flare" mind you I dread to think what has been written on them over the years as I was always at the doctors and I hardly ever go now. Very strange in fact last time I saw my doctor she had had a baby and the baby was 6 months old, I never even new she was having one lol :P
Perhaps it was the RA that had flared up but who know I'm feeling better and like you and all of us I have good days and bad. :happy-day: Lynn

#5 Shelley Ensz

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Posted 17 November 2010 - 02:56 AM

Hi Lynn,

We should have a whole section of the website on how to request, read, and recover from getting your medical records.

Emotional recovery is often necessary from reading our medical records.

In my medical records, I learned, much to my total astonishment, that I had had a heart transplant (!) and that I had beautiful, well-manicured nails with 'nice polish' when I hadn't had my nails cared for properly in years.

From that wrong chart entry, I made a mental note to try to have my nails done nicely when I go to the doctors now because I don't want to see written in my chart, "This woman has awful hangnails and no polish, and needs a manicure!". I mean, like since how/when/why does a manicure enter into the medical equation?

Just to top that off, recently I have gone with nice pedicures, too. :D

In one chart I found that I was an "SOB"!! Which bothered me tremendously, until I finally discovered it is an abbreviation for "shortness of breath".

Sheryl in particular has some good tips on getting medical records. I only did it when one of my doctors strongly encouraged me to get all of my records and organize them into a sensible collection so they could look up the documentation on each symptom, as my medical history had become very confusing.

Nowadays many clinics have electronic records, which makes the record-keeping and diagnoses much easier to keep track of. But it's no less important to see what doctors are saying in the charts, because sometimes it is drastically different from what we recall of the appointment or even an obvious confusion between us and another patient.
Warm Hugs,

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

#6 Joelf

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Posted 17 November 2010 - 03:55 AM

Shelley, that is a very interesting point about getting medical records.

In the UK, the NHS (National Health Service) is in the process of trying to correlate everyones medical records in one place, so that they're always available, no matter which hospital/consultant needs to see them. Some people have objected as they're worried over their confidentiality, but I think it would be a good idea. My only very minor gripe with the wonderful treatment I've received is that there is a distinct lack of communication between the three hospitals I deal with - a case of the right hand not knowing what the left is doing - and my poor general practitioner is always the last to be told anything.

I tend to carry all the letters I've received from consultants detailing all my complicated blood tests and also details of each lung function test so that whenever I have a consultation at any of the hospitals or visit my doctor I'm able to tell them their job show them the results and save time having to go over the same ground again in a sort of 'Groundhog Day' scenario. ;)

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#7 Amanda Thorpe

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Posted 17 November 2010 - 04:13 AM

I was in the doctor's surgery once and happened to glance over and read a letter in my file from a neurologist I had seen many years earlier. He had made derogatory comments about me, one of which was that I was immature. I had seen him because of migraines and I had waited 6 months for the appointment, I was desperate and my expectations were high...well he told me to keep taking the painkillers and to try yoga...that was it. I laughed at him and walked out. Needless to say if I saw anything like that these days I would be having a face to face discussion with the doctor in question...
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#8 Sweet

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Posted 17 November 2010 - 05:34 AM

Hmmm no flares? I disagree, and so does my Rheumatologist. I was in one a few months ago, and had to do a Prednisone taper. My CRP was to the roof. I cringe a bit when medical professional put their foot down so hard. In my opinion, there are very few hard and fast rules when it comes to so many diseases.
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#9 debonair susie

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Posted 17 November 2010 - 09:00 AM

In my humble opinion, any derogatory remarks that are "noted" in a patient's medical file, should be cause for the doctor to be up for review :angry: . I don't believe said notes are even relative to the patient's health issues. Furthermore, if such doctors would spend MORE time demonstrating compassion and LESS time being disrespectful, they would gain more points in my book! I'm pretty sure it would be safe to say that the majority of us would prefer to be heatlhy, as opposed to spending the time we must...with dr visits.

*Sure, doctors are human.I just don't feel it is necessary for a medical record to be a forum to "vent" about some patients.

Shelley, I also believe your doctor may have misspoken, by not expounding further...on the subject of "Scleroderma not causing flares".

In MY particular case, my Scleroderma IN COMBINATION with my Psoriasis can go into a horrific flare! First-hand, I am unable to speak to Scleroderma, by itself...causing a flare. I would venture a guess that very few of us have "only" Scleroderma.

Now that I have articulated my thoughts...you can "run me out of town"! :blush:
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#10 miocean

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Posted 17 November 2010 - 05:29 PM

I agree with keeping medical records but how many and where? Just my blood work alone since transplant would fill up a book. The only actual report I've seen is one that had misinformation and said I was non-compliant (which I am. :barf: My general practitioner was the first one to get computerized and when I go I bring recent tests and they are just scanned into my records. I want one of those machines. Most of my doctors are computerized now, but not my gyno or nephrologist. Is there a law that says they have to be computerized by a certain date? Good thing I asked for a copy of one of my labs, my sclero doctor requested an Adolase test for myopothy and they ran Aldosterone. The only reason I knew that was she is notorious for not getting records so I bring hard copies to her and got one for that. I called and told them it was the wrong test and to take it off my bill, but now I have to go and register again and have it drawn. :( I go for regular labs on Monday so it's not like they have to stick me again but it's a pain to register.

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