Really bewildered by all this

General Blog
1

Apologies for babbling here, it's a terrible night.

I feel like maybe this should be obvious to me, and it's really not -- I guess I'm still a newbie, I don't know. But the past month has been bad, and I'm just now maybe putting the clues together. I had to crap out on a dinner-and-movie night with a girlfriend because I feel strongly as if I'm coming down with a virus. Which happened two weeks ago, too, and once before that. Each time I don't actually get sick-sick, like respiratory, fever, all that. Just feel like I have the damn flu. I hurt head to toe. Esp. head -- this headache has been going since Wednesday with no pause.

Each time this has happened, I've also seen this rash on my right arm get worse. It's been a mystery rash for years -- maybe decades -- and it's always been very pale and not noticeable, until the past two months. Tonight when I got out of the shower, the top side of my forearm was fire-engine red, welted, really noticeable.

Is this PSA? My friend tonight googled psoriasis pictures and my arm resembles what she found. Not nearly as bad as some of those photos, but otherwise, yeah, it looks like psoriasis. And here I am again feeling like crap on a stick -- it's like every muscle and bone in my body is ticked off and throwing a tantrum.

I don't even know where to start right now. I guess I'll let my doctor know that this is happening. I mean, my joints don't really hurt any more than average for me. But the rest of it is making me crazy. Each time the flu-thing happens, the rash gets worse. It's spreading now down to the top of my hand. It doesn't itch. It's raised to the eye and to the touch, and it's hot to the touch.

I feel like I'm losing my mind. Is this all related? And I feel stupid asking that, because you folks can't see me, you are not my doctor. I just don't really understand. Any of it, I don't think. Every time I turn around it's something new, and I admit, I feel horrible tonight. And kind of scared.

2

HI,

I am so sorry to hear about your troubles. I am going through the same thing. Please take pictures of the rash. Sometimes, it takes a while to get into see a doctor and the rash could have dissipated. This will be very helpful to the doctor. Keep us posted on your progress. Wishing you the best!

Sunny

3

Sunny -- thank you for replying -- yeah, I took several photos of it, hope they will help. And I'm really sorry you are going through this too. It just plain sucks. :-( Have a good morning!

4

Sybil -- thank you for replying -- you're right, I really do feel strangely panicky! I've had a few health issues here and there over the years but nothing like this sort of stealthy sneaky thing. I have tended to be a skeptic -- I pretty much ignored the fibromyalgia diagnosis twelve years ago, felt as if I should simply "power through," suck it up, etc. Which I did, more or less, and then went into a lengthy remission. Now this -- I am unable to ignore it, I suppose. I had never even vaguely suspected psoriasis before -- never blipped my radar -- much less psoriatic arthritis. And even this, I'd thought, well, I'll just suck it up and it'll be fine.

It's really not fine. I feel like this past two months have been sort of this abject lesson in humility. I'm scared because the tiredness and flu-ish symptoms have already cost me a couple of sick days from work, which then makes me think, Should I be putting in for FMLA just in case?

I'm going to let my doctor know about all of this, see what he says. I am not taking any meds at this time, since at first I was doing well. I feel calmer today and I think that will also help. Have a great day and thank you again for your insight!

5

Hi, Janissa. I really felt for you when I read your blog. Sybil’s suggestions are spot on: document it all, take pictures and see your doctor. I was trying to get a handle on where you are on your PsA journey, but your profile and posts don’t tell all that much beyond the misery you’ve had with your hands and toes. I think I read that you were going to see your rheumie in January. Did you mention these things then. And now you mention that you aren’t on any meds: was this your rheumatologist’s suggestion, or your own decision?
You’re in a miserable spot with this “stealthy sneaky thing”. LOL, love the description! I often say that PsA is a vandal and a thief: it will wreck your body and steal your life, if you let it. Don’t. Just don’t give in.

6

Seenie -- thank you for your reply! I am pretty early on with this PSA stuff; I haven't had many problems until recently, beyond the various sorts of joint pain. I didn't tell the rheumatologist -- wow that's hard to spell -- about the rash because I hadn't put two and two together. I do think he needs to know, and the flu-like stuff.

The meds -- I am allergic to NSAIDs, which sucks. He prescribed gabapentin back in the fall, but I had a crazy reaction to Neurontin years and years ago (dystonia, will never risk that again) and can't take that either. So basically I'm on Tylenol prn and guts.

But clearly things are progressing, so I will be calling his office tomorrow and letting them know about the issues, see what happens.

I think the flu stuff + rash is really messing with my head. The joint pain I sort of power through -- it is not sufficiently bad that I can't make a stiff upper lip and grit my teeth. But the others -- I would SWEAR that I've contracted a virus, and yet the next day it will always be better (like today). And the rash -- somewhere I read about hot showers making psoriasis worse? Something.

I guess that's the thing about autoimmune problems. Why do our bodies DO this? Why is mine kind of attacking itself? This is where I think my freak-out sort of bubbles up, because on some deep level it just sounds crazy. And yet my mom has been struggling with an autoimmune disorder for decades (vasculitis) and no, it doesn't make sense, and you'd think I'd comprehend that better than I am doing. hah.

Thank you again for your reply -- I appreciate it.

7

I'm new to this myself so I don't really know if it's a PsA thing. If it's not, it does sound like lyne desease or fibromyalgia

8

Janissa, I am so so so sorry you are suffering. It just isn't fair. I know that PsA feels like the biggest betrayal EVER - I mean...it sounds like some B science fiction movie..."Doctor, it appears as though her body is attacking itself...." Where do you go with that, right?!? The answer to that is, you go to the doctor, and you come here. The doctor is going to be your first line of defense. I'm as guilty as the next person about not putting two and two together (just recently diagnosed with Inflammatory Bowel Syndrome). I had no idea that my crazy gastrointestinal problems had any relationship to my PsA...turns out, it does. :) Now I'm on medication and that part has calmed down significantly, while my psoriasis and inflamed joints are completely out of control. Shoot...I never know from one moment to the next which knee is going to get all hinky on me. I think, at this point, assume that everything weird that goes on physically has something to do with your immune system. Call the nurse at your doctors office whenever something new pops up. They will let you know if it is something you need to be concerned about or not. And ask the doctor about some DMARDS. There are several possibilities. Most have side effects that are...unpleasant, but they will prevent permanent damage to your connective tissues which is critical. It is much better and easier to get into remission before EVERYTHING goes wonky. At least it seemed that way for me. The last few times I went into remission it was because the doctor was very aggressive with treatment early on. Unfortunately, because of circumstances beyond anyone's control, nothing seemed to stop the progression this time for me. I still hold out hope, though. Without hope, we are doomed.

Please, please, please do NOT feel stupid about any question you have. The purpose of this board is to help you know that you are not alone in this fight. We are standing (metaphorically) right by your side shoulder to shoulder. We've got your back. There are lots and lots of caring and knowledgeable people that post on here (kudos to the moderators). We may not be able to tell you exactly what is going on but we sure can prop you up and talk you down, when needed. I hope tomorrow is a better day, and the next day an even better one.

9

tmbrwolf329, thank you so much for your reply. I'm definitely calling my doctor's office today. I'm very sorry to hear about your experiences -- damn, that sounds just awful. But glad that at least the GI things are coming back under control (and that makes me wonder about my own checkered GI past, hmm). Everything I wrote about two days ago has calmed down somewhat this morning. Whew. Still, need to let the doctor know about it. And see what the next PSA Adventure holds. Grrr. Have a marvelous day!

10

Janissa, I was diagnosed 32 years ago with PA. I had a fever of 103 and severe pain in my back area, above the kidneys. I was fortunate enough to have a sharp ER doctor who sent me immediately to a Rheumatologist. The small psoriasis patches here and there that began years prior and thought nothing of it, especially retaining to arthritis(And I am a Nurse!.) Over the years it begged the question... what comes fort the chicken or the egg? No one really knows, why or how,

Some days with this disease you do feel like hell and maybe it's the flu, or a virus? But as quickly as it began, it stops. This is a systemic disease and that means it effects the entire system of the body so unlike RA, it is not specific to joints only. With PA your tissues are involved, as are your ligaments, so the flu-like symptoms can be a flare-up in disguise.

I suggest you get to a Rheumatologist for a work-up and then see what you are dealing with.

Best of luck.