[msnold]

:sadlease help! I am so frustrated. I'm going to list everything that's been going on, and this is probably going to be long, for that, I apologize. Ok, so here it is in a nutshell.
I am 28 year old female and have been experiencing several symptoms for the past 3 years. I'll list them below:
Joint Pain
numbness in hands/fingers/toes
Hand/finger pain so badly, I can't steer my car
headaches
fatigue
white spots on fingernails
waking up at night from pain
general aches
back/neck pain
rosacea like rash on face (after shower, while in sun, and when stressed - hot to touch)
I went to a rhematologist and he said that he doesn't think I have lupus, but I am concerned.
I was diagnosed with RA and fibromyalgia.
My ANA test was a "moderate positive" for homogoneus, speckled and atypical speckled patterns. My RA was a 68 (normal below 20) and I had a high C3 (177 - normal range is 79-152).
My aunt has lupus and was dianosed 10 years ago.
Is this in my head? I am so frustrated because I don't think it's just RA.

 

[Lily]

Hi msnold and welcome

We are used to long stories here

Nope I don't think it's in your head at all, obviously you have quite a lot going on that may or may not be lupus.

A few questions:

How did your Rheumy determine the Fibro diagnosis? Did he do a tender point examination?

Around 30% of Lupus patients have Fibromyalgia as well.

Did your Rheumy confirm RA from x-rays as well as your positive RF? I am sure you probably know that some people with Lupus can have a positive RF but show no evidence of RA on x-ray. Lupus tends to cause arthralgia which does not deform joints.

Have you ever seen a Dermatologist with your facial rash to confirm whether it is actually Rosacea? It might be worth finding a good Dermy if you haven't and it's possible if they query Rosacea for them to take a skin biopsy for Lupus. It's usually taken from exposed and unexposed skin and is positive in some cases. If it is positive it definitely means you have some kind of Lupus, if negative you could still have Lupus though.

Have they run any kidney tests and also checked your urinalysis?

Is your Rheumy treating you with any meds for the RA and Fibro?

love
Lily

 

[msnold]

Thanks Lily! I feel kind of trapped here. Yes, he did the tender point inspection and I failed miserably. He is treating me with amitriptyline and lyrica, but I don't like how they make me feel. They do seem to help with the everyday aches, but not the flare ups.
No other tests or X rays have been done and I have never seen a dermatologist about the rosacea. I have this weird rash on my arms that I have seen a million doctors about and no one seemed to know what it was, but the red puffy sunburn like rash on my face is different looking.
My fingers are starting to deform and he based my RA on that, the positive RF and the inflamation.
I've noticed that I always seem to get a stomach ache right before a "flare up" and I can barely function when I get them.
I am taking my son to the beach for Memorial Day and started tanning two weeks ago. I have noticed that my face had that redness almost the whole time. It's not very noticable now that I have a base tan, but if you know to look for it, you can see it. I have noticed that in the past two weeks, I have had two really bad "flare ups" and my fatigue has increased tremendously. My husband gets so frustrated that I can't seem to stay awake at 8:30.

Does this help at all? I appreciate your time! Thank you!!!

 

[Katharine]

Hello and welcome

There are a couple of things that jump out at me here. Firstly, I would like that rheumy to be confirming RA throug more than simple "looking" at your hands, even if the deformation seems obvious, I would rather he did confirm with x-rays... Not many rheumatologists are specialised in auto-immune diseases and I'm wondering if your is. If it is RA, what treatment is he proposing for the RA? RA issues won't go away with treatment for fibro alone.

Second the SUN -ooh yikes my pet topic here!!! IF you do have LUPUS you have to be very very careful with the sun and I really can't stress that enough!! Even if you tan, the sun is EXTREMELY dangerous for people with lupus and most of us wear factor 50+ suscreen YEAR ROUND (even in cold places like Belgium). Tanning beds are also out as they also have UV rays. Sun, in people with lupus, causes inflammation. That can be skin, joints, internal organs... and therefore causes flares of the disease including extreme fatigue. And that's without going into any skin cancer dangers....

Obviously some people are more "photosensitive" than others and some can stand some very limited exposure but it has to be limited. Tanning intentionally is not limited. Although it may not seem easy, we have all learnt to live with the sun but well covered up. Wearing long sleeved protective clothes and, if we're being exposed to a lot of sun, a good hat! Sunscreen needs to be of very good quality and reapplied frequently.

Yep, it's all bad news if you love being very tanned but I find it is the least of my worries and I'll go for the Nicole Kidman look instead

bye for now,
Katharine

 

[Clare.T]

Hello

You write

.....started tanning two weeks ago. I have noticed that my face had that redness almost the whole time. It's not very noticable now that I have a base tan, but if you know to look for it, you can see it. I have noticed that in the past two weeks, I have had two really bad "flare ups" and my fatigue has increased tremendously....

Perhaps there is a connection between you tanning and feeling worse? If your red skin and whatever is on your arms gets worse in the sun you would be well advised to protect yourself from it as UV can worsen systemic disease activity.

One lupus rash that is often on the arms is the type called subacute cutaneous. Have a look at the sticky post at the top of Symptoms section which has links to photo sites to see if there is anything that resembles yours. It's a long shot and you can't tell that much from photos but sometimes if they are typical it is obvious, except that it might be something very similar looking

http://www.dermis.net/dermisroot/en/38885/diagnose.htm




Rosacea too worsens on UV exposure. Sometimes it's hard to tell between rosacea and what's called lupoid rosacea. Often the failure of rosacea treatment can indicate what's going on. A skin biopsy can help too.

There's another test for RA called the CCP which is reckoned more sensitive. People can have deforming lupus although it is quite rare and a lupus/RA overlap is possible too. About one third of those with lupus and similar conditions have a raised RF. Do you have all test results? You can check if all the relevant autoimmune connective tissue disease tests have been done. How about complement lupus anticoagulant and anti cardiolipins or the other antibodies like ds- DNA and anti Ro etc. Were all the full blood count tests normal, platelets OK, white blood cells OK, signs of anemia? Urine should have been tested too. It could also be useful to know what the ANA titre was.

Some of the meds typically used for RA are not used in lupus. Not all rheumies are experts in lupus. If you have any options it could be worth getting a second opinion.

Good Luck

 

[msnold]

Thanks everyone! I appreciate all of the advice. I see my Rheumatologist next Monday. If he doesn't take my symptoms more seriously and run some tests and take X-Rays, I will seek a second opinion!!!

 

[onetay]

msnold,
Hi and welcome. I will say this much you have something going on rather it be lupus or ra it does not matter at this point no seems to be doing anything even for the symptoms. They should be looking confirm that it is link to the ra or be looking at what the new problem is. You should also be getting some relief for the pain you are having in the mean time. I would take the list to the rhuemy and tell him that you need to know what is going on for sure and also some relief to the problems. If he still does not want to do anything I would be seeking a new doctor that is willing to help you more and I do know that is sometimes easier said than done. I to have my rounds with the doctors but they also know that I mean it when I say that if you won't help me I will find someone that will. My ob/gyn has learned that I do know myself better than they do and what works for me works I don't know why, so he often asks which ways I want him to go with things before planning a course of action. The gp and rhuemy are still new so we are getting them trained still lol. You have to take care of you first and finding out what is causing the problem is the top of the list right now. I wish you all the luck and let us know how things are going please. I hope you are feeling well and doing well.