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View Full Version : Is my lupus evolving??!



Mommyof1
10-14-2009, 09:08 AM
Ok so recently I realized I am flaring every month and I used to feel a lil better the week of my periods. Now, even at the moment, I am in a flare. I have 4 mouth ulcers even after using a steroid rinse and the burning/numbness/ache I get in my legs has now spread to my arms from my wrists up into the base of my neck. I wanna know why this is as I am kind of in shock about it and haven't had new symptoms before since it started a year ago. :/ Can anyone relate?? Thanks -Brittanee

mountaindreamer
10-15-2009, 08:09 AM
hi mommyof1....the burning aches that you describe could be fibromyalgia. There are several pressure points in the shoulder and neck area. My legs also ache, and my wrists always hurt. Sometimes i have a hard time telling the difference between the lupus pain and the fibro pain, but the burning pain is usually around the fibro pressure points.

Mommyof1
10-15-2009, 11:57 AM
hey again. i dont have any pressure points related to fibro so i was wondering if i could still have it anyway?

Saysusie
10-15-2009, 10:50 PM
Did you test your pressure points yourself or was it done by a doctor. I only ask because we are not usually able to test our own pressure points, but when a doctor/nurse/PA does it, it can make us jump off of the table.

At any rate, you may be in the midst of a Lupus flare that has affected you differently from previous flares. That is not at all unusual as the disease changes within us! Do you have an appointment to see your doctor anytime soon? If not, make one. If so, make a list/journal of your symptoms, how they've changed, and when you began to notice them.

Plaquenil has been known to have a positive effect on mouth ulcers, however they take a while to work. Often, doctors will give you Prednisone with the Plaquenil so that you can see/feel relief sooner.

I wish you the very best
Peace and Blessings
Namaste
Saysusie

mountaindreamer
10-19-2009, 08:02 AM
hi mommyof1, Saysusie is so correct. We can not test ourselves for fibro pressure points. But if a physician touches us at one of the points, we either jump off the table or take a swing at the dr. So, let your dr. check you and just see if this is what is going on. I hope it is not, because fibro is very painful, but it would answer some of your questions.

Mommyof1
10-21-2009, 09:41 AM
I have been checked for fibro several times and dont have any pressure points :/ Idk which is worse the fibro or neuropathy?

mountaindreamer
10-21-2009, 05:44 PM
hi brittanee. What a question, i don't know which one is worse, they both cause extreme pain. Ok, i am glad that a dr. has checked you for fibro, now you can mark that off of your list. Lupus is a progressive disease, and you might want to call you dr. to see if he/she can get you out of this flare cycle. When a flare lingers on for weeks, it becomes so hard to deal with it. Don't let it get too bad before you ask for help.

Mommyof1
10-22-2009, 12:21 PM
I have been asking for help and letting my dr know that my flares aren't going away. Even if they aren't horrible I personally dont think its a good thing. I keep stressing prednisone but they are being stubborn with it because of side effects. What can I do?

mountaindreamer
10-22-2009, 06:24 PM
i don't know. I am experiencing the same thing. My flares are getting worse, and i am resisting prednisone. The reason i agreed to mtx was to try to avoid prednisone. I guess, we either take the steroid or deal with the flare, i wish there were other options.

lucky7
10-23-2009, 02:23 PM
The thing with my Fibro is that it was flared up REALLY BAD when i was examined for it so, the dr diagnosed it. Well, another dr tested me for it and i wasnt experiencing it at all THAT day so THAT dr said i DONT have it. IDIOT! IF he KNOWS about it like he should, then he would KNOW that its not necessarily present at all times. IT FLARES on and off along with my Lupus flares. AND THAT also depends on how BAD my flare is. It also depends on how much my Sjogrens and Raynauds is acting up that day. My body can be all over the place and im sure yours is as well SO, dont let ANY dr take ANYTHING away from YOU that YOU KNOW is happening to YOUR body OR that another dr has diagnosed. Get any and ALL tests done by as many drs as you NEED to to get an answer that YOU KNOW is the TRUTH. GOOD LUCK!!!:cute:

Mommyof1
10-24-2009, 12:08 PM
thanks lucky i will def keep that in mind. If you have read my other post about my symptom increase I wrote my dr an email about that and stressed I dont think my meds are working and i dont want pain meds to cover something else up and not take care of it which is what i think it is happening with the plaquenil/naprosyn. I also left my cell number for her to call since its a weekend. I cant take it because I can't function :( Ahh!

justomegirlindallas
10-26-2009, 07:42 PM
Ok so recently I realized I am flaring every month and I used to feel a lil better the week of my periods. Now, even at the moment, I am in a flare. I have 4 mouth ulcers even after using a steroid rinse and the burning/numbness/ache I get in my legs has now spread to my arms from my wrists up into the base of my neck. I wanna know why this is as I am kind of in shock about it and haven't had new symptoms before since it started a year ago. :/ Can anyone relate?? Thanks -Brittanee


FYI - Flonase can cause mouth ulcers and so can the steriod rinses. (think Thrush)

lucky7
10-27-2009, 11:27 AM
HI BRITT!!! HOPE you are doing ok! THINKING OF YOU!:cute:

mountaindreamer
10-27-2009, 06:32 PM
hi britt, have you heard from your dr......i hope you have gotten some relief from all of your symptoms.

Mommyof1
10-28-2009, 12:59 PM
So..instead of getting better things have gotten worse. More CNS type symptoms such as vertigo/head pressure etc. I saw my pcp yesterday and he prescribed dexamethasone nasal spray instead of flonase. My lung function test came back abnormal so I have to get a CT done to figure out why. I was also put on neurontin 300mg once at night by my rheumy for the burning pain etc. I go back next week to my pcp for depression meds as well. Other than that I got blood work back and my cpk is elevated again for the third time to 205 and my BUN was 28 and BUN/Creatinine Ratio was 35. The irony of all this is I had normal blood results previous to this round. I am so foggy I feel like im constantly dreaming. Im not sure what to do. My drs are fighting putting me on prednisone because of side effects but how much do they expect my body to handle before it really messes stuff up??? GRR. Hope you all are well *hugs* -Lupie Britt

lucky7
11-02-2009, 02:00 PM
AWWWWW, i am SO THINKING of YOU BRITT:yes: PLEASE be WELL and keep fighting the fight! LOVE and HUGSXXXXXXXXXXXX