Concerned - and would like some input.

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CRPSpatient
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Date Joined Mar 2011
Total Posts : 1276
   Posted 12/29/2011 11:53 PM (GMT -6)   
Hi everyone - I'm usually active on the Chronic Pain forum, but if anyone can give me some input here I'd be very grateful.

about 2 1/2-3 months ago, I started spiking fevers every evening (anywhere from - I'm not sure if it's an evening thing as such, or just that my body is on a 24 hour cycle with it. Also debilitating fatigue, which is getting worse. I'm constantly exhausted anyway - I have severe pain due to full-body CRPS that stops me sleeping and I have some 'fog' with the CRPS - not unlike 'Fibro fog' - but this is like nothing I've experienced before. It hits me like a bus and I can't think, can't function. I ended up lying on the floor last night, because I feel too weak to crawl into bed to rest.

The pain is a difficult one to pin down - I've got pain body-wide as it is, but I feel it's worse during these episodes. I also get more pain in areas not so badly affected by the CRPS.

Since I last spoke to my GP about it (when he was a bit stumped) my face flares red as well - looking at photographs of the malar rash, I suspect that that is what it is, so have taken photos to show my him in case it's not there when I go to see him.

My other big worry is that I know it's steroid responsive. I had to have my wisdom teeth out in early December and was put on prednisolone to help keep my CRPS under control. Fever went away and fatigue improved, then returned within a few days of stopping the steroid.

Aiming to go back to see my GP next week, and I'm seeing my Pain Management doc later next week so I've lots of questions to put to them.

Thanks in advance.

Laura
Moderator - Chronic Pain Forum

Full body CRPS with spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bursitis, CTS, osteoporosis, multiple compression fx, disc bulges.

Oxycodone ER/IR, Topamax, Mobic, Somac, Cipramil, Midodrine, Vit D & C, SCS, baclofen/bupivacaine pump

Lynnwood
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Date Joined May 2005
Total Posts : 7720
   Posted 12/30/2011 12:36 AM (GMT -6)   
I'm not familiar with CRPS, so can't really separate it from Lupus symptoms for you. Fever & fatgiue can occur with so many things, and so can a red face. I don't know that I'd put lupus at the top of my suspicion list - best to let the Drs decide.

My suggestion would be to report everything you've told us to your GP, and get a referral to a rheumotolgist for a workup. A rheumy is the Dr who diagnoses & treats diseases like Lupus -- many GP's say things about lupus but they don't really know much about it.

Check out the Lupus Resources thread for tips on what to tell your Dr and to see how lupus is diagnosed.

Hope you feel better soon,
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 12/30/2011 1:49 AM (GMT -6)   
Thanks so much for the reply Lynnwood -- it's after reading your Resources thread - and after four people (one with Lupus herself, one with a son who has Lupus) have suggested that this might be a starting point that I decided to post.

CRPS - my apologies for not explaining to begin with. It stands for Complex Regional Pain Syndrome. It's about as poorly understood as can be - usually starts after injury or another trauma - and the current theory seems to be that something misfires in the process of the brain/central nervous system recognising normal sensory input. The injury resolves, the pain doesn't - instead becomes worse and worse, involves circulatory changes, changes in muscle tone and skin, hair growth. Although the primary pain is neuropathic, a lot of us get secondary muscle and joint pain as well. This is why it's hard to distinguish between current problems and anything new.
I was tested for Lupus about four or five years ago - my PM doctor felt then that I had a lot of symptoms consistent - but I was ANA negative and it was never taken any further.

I'm not one for self-diagnosis, but at the same time the fatigue/fever, the distribution of the redness - and the input of people I know has me worried :( It took six years (mostly of me being accused of faking/mental illness) for me to get a diagnosis for my CRPS, and I know that *something* else is going on with my body that isn't right. I have fantastic doctors, but I want to be armed with as much knowledge as possible.

Thanks again for your time.

Laura
Moderator - Chronic Pain Forum

Full body CRPS with spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bursitis, CTS, osteoporosis, multiple compression fx, disc bulges.

Oxycodone ER/IR, Topamax, Mobic, Somac, Cipramil, Midodrine, Vit D & C, SCS, baclofen/bupivacaine pump

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 12/30/2011 2:42 AM (GMT -6)   
Sounds like an awful disease!

Please note that according to the Lupus Organization, you can have lupus *without* a positive ANA. Often a GP will test the ANA and say "no way" before you ever make it to a rheumatologist...gotta' get to the right Dr!
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde
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