[wisconsingal]

Hi all..

I haven't checked in for awhile so here it goes.... Still having a rough time with muscle and joint pain, low grade temps, night sweats, headaches, weakness and overwhelming fatigue. I had mentioned in previous posts that the rheumy that I saw in Jan. was a dud and wouldn't look past a fibro dx. so I will now be having a second opinion with a rheumy that I have heard a lot of good things about. My appt is on June 23rd.

About a month ago..I developed a resp. infection....I am still coughing a lot and the fatigue just became unbearable so I went to check in with my PCP last Friday. He ordered some labs as I hadn't had anything checked since last December. He ordered a CBC, basic profile, TSH, sed rate, CK and an ANA. Everything but the ANA is back and guess what.....all completely normal.

I know I should be happy that my labs are normal..but I'm not. I know I have something more than fibro going on and jus wish the labwork would cooperate!! I know the ANA will be the most important....but in my mind..I already see it coming back normal as it did in December.

My PCP is really thinking I have something more going on too...(bless him!!). He looked at my palm rash again and listened to my lungs. He heard rhonchi and wheezes thru out so gave me rx for albuterol inhaler. He also refilled my Vicodin to get me thru until my rheumy appt. He's so great!!!

The other problem I've been having is with my mouth, gums and teeth. I had a filling that fell out and there wasn't enough tooth to do anymore fillings so my dentist said I needed a crown. Went last Wed to shave the tooth down and now have a crappy temporary crown. My gums are sooooooooooooo painful and irritated....I can barely stand it. I showed my pcp and he said that he feels my body is just rebelling towards everything right now. It hadn't gotten any better so I had my dentist check it yesterday. He said it didn't look bad at all and basically gave me a big schmeel' about people with "low pain tolerance". I told him after his speech that I am undergoing testing,etc for lupus or some other autoimmune type disorder and he said "oh..that changes things..people with lupus have a lot of mouth and gum problems and often have trouble with dental work". Anyone here go thru anything similar?

My other question is about "photosensitivity". I have been outside more now that it's nicer out. I don't get a rash when out in the sun...but I do start feeling sick very easily...including a severe headache, nausea and severe fatigue...would they consider this photosensitivity?

I just feel so overwhelmed right now and sooooooooooo fatigued. Most of the time I literally feel like i could just collapse...grrr.

Ok..that's kind of my update for now. Thanks to everyone here....everyone has been so kind and informative...so glad I found this site!!

Hugs,
Olivia

 

[spellbinder]

:wavesmile:hi olivia

sorry to hear you are feeling so bad. in answer to your dental question...yes we lupies have dental problems. i know that i have a very hard time after i have dental work done. my dentist (who i use to work for back in the day) gives me hallcion before and during my appointment so that i'm comfortable during the procedure along with nitrousoxside and for afterwards i finish the hallcion.

warm salt water rinses help with the irrated gums. keep an eye on it. watch for any sores that may pop up cause you don't want an infection.

feel better
hugs and kisses

 

[doris999]

Hi,
I can relate to some of your symptoms,
The dentist for one, in 6months my dentist said my teeth have changed that quickly that i now need 4 crowns instead of 1, i just wonder, money maker!!!!!!! But since child hood i have always had to have something done every 6 months, so it makes me wonder.
As for the sun, i do get a rash if i sit out in it to long, and like you i feel sick after i've been outside.
i also get mouth, nasal & oral ulcers sometimes all together, OWWIE.
I hope your new Rhuemie can come up with some answers for you, i'm still waiting for my results & appt to see a specialist.
OH, my dentist knows about the lupus thing and has never mentioned that it could affect my teeth & gums, that's very interesting thanks for the info, i may very well change dentists!!!!
I hope everything goe's well for you.
Sandra.

 

[Katharine]

Hello Olivia,

Yep, you guessed it, I'm going to tell you off :rotfl: No, no swearing please!!!! Just kidding, you were very polite in your post

My dentist also said the same as yours though I am lucky to have no teeth problems in general (touch wood).

It sounds like your PCP is taking things more seriously. Have you asked him about getting a referral to a rheumy EVEN IF your ANA come back negative? You should see a rheumy specialising in auto-immune diseases as you may be able to be diagnosed with UCTD (Undifferentiated Connective Tissue Disease) and start treatment (same treatment as for lupus) even if you don't meet "full" criteria for SLE now. I think it would be well worth pushing for that on the grounds that "something systemic appears to be going on"...

I know how it feels to have bloods that constantly come back negative. Mine always did and even today, barely reflect what I'm going through (when they do my rheumy visibly sits up and takes notice :hehe.

Katharine

 

[pollianna]

My bloods were negative for almost 10yrs then bang,malar rash, Rheumatoidfactor 116, positive ana. I didn't even feel like i was flaring at the time? How weird is that!!

CTD is a weird one that's why it's so hard to pin down. good news is yr pcp isn't saying it's all in yr head

Keep gently pushing and look after yourself :hug: as best you can, it always comes out in the wash

 

[Lily]

Hi,

The headache, nausea and severe fatigue need to be mentioned. Just because you don't get a rash doesn't mean you aren't suffering photosensitivity.

Good luck with your test, let us know how you get along with the GP.

love
Lily