[Jen28]

I need advice & wisdom. I'm not looking for a dx. I've given up on that. Any opinions would be greatly appreciated. I've been gone from the board for a long time. I love it here but I get so frustrated looking for answers.

I sought the help of a rheumy 12/07 because of terrible joint pain. She ran 100 tests. She checked for tender points & I do not have any. When it was all said & done she told me I was pre-Lupus & that she wasn't going to treat me. She retired a few months later. I was told that she had some personal issues causeing her to lose her bedside manner. I experienced this 1st hand. I told her that my legs hurt so bad that I had to go from 6 days a week to 3 because I couldn't handle it. She then tells me that I'm not active enough. Since I'm over weight, she assumes that my weight is causing my joints to hurt. I had no joint pain or pain at all for that matter when I weighed 200lbs so why do my joints hurt now at 160lbs? My right arm becomes almost useless when I'm having an episode. She said that it could be my endometriosis. I am to discouraged to seek the help of another rheumy.

Is there such a thing as pre-Lupus? I've had a malar rash come & go for the past 8 months. The rash now also on my upper lip & covering my chin. It gets bright red when I am I the sun too long so I avoid the sun or wear hats. I've had ulcers in my nose for about 3 months now. I get them in my mouth all the time. My big toe nails are separating from the skin. My lymp nodes swell up & I feel like I have the flu with a stiff neck but I don't have any sinus issues. I always have a low grade. My joints burn on the inside but they are not hot to the touch or red. I tested negative for RA. I have chronic headaches & I often get migraines. I was in a wreck 3 weeks ago & my head is killing me. The dr. put me on Ultram ER 200mg & it is working. Alot of my pain is nerve related & percocets & lortabs do nothing for the pain. My bones hurt. No muscle pain before the wreck & not too much after wards. I have severe IBS. I only go once every 2 weeks if I'm lucky. I can't use anything orally so unfortunatly that leaves me with enemas as my only option.
I feel like I need to see another rheumy to get to the bottom of my issues but I hate going to dr.'s now. I'm tired of being treated like a dummy, looked at like I'm crazy, given meds & basically told to go away, we can't do nothing for you. Lupus is just too serious to ignore. I need guidance & wisdom.

Have a blessed & wonderful weekend!
Jen

 

[lazylegs]

Hi Jen,

I have missed you in chat.

Don't give up on getting a diagnosis. Believe me I had to go to numerous doctors to finally find out what was wrong. I even gave up a few times. You might consider calling your closest Lupus organization to find a good doctor near you.

It also sounds like you need further testing to for your bowel issue. Two weeks is defintiely not normal. The following site has some suggestions for you to try.

http://digestive.niddk.nih.gov/ddiseases/pubs/constipation/

Take care,
Lazylegs

 

[Katharine]

Hello Jen

I agree with lazylegs, you musn't give up. Most of us here have had to go through numerous docs before getting any answers.

Have you tried posting here to get a recommendation of a good doctor in your area? It would be best if you could see one of those rheumies that deals more with auto-immune disorders.

I sorry you have been so disheartened but really, you do need to just keep going back. Oh, and I have never heard of pre lupus, just pre DIAGNOSIS which for some of us unfortunately lated for years. Looking back, I think many of us would have insisted more.

Katharine

 

[Joandublin]

Hi Jen

First of all Im really sorry you have had such a hard time with your health and no clear answers. It is very disheartening and I can sure understand the feeling of 'throwing in the towel'. Its very human to feel like that but the good news is that you have dusted yourself off and sound like you are ready to tackle things again. Well done!

I would definitely seek a Rheumatology referral again. Something is most definitely wrong with your body and its high time you found out what it is and get the appropriate treatment. Never feel the need to apologise for trying to find better health. You have young children to look after and a long life ahead of you. You deserve the best quality of life you can give yourself.

I have never heard of the term pre-Lupus but at a best guess I would think it was meant to suggest that Lupus was a possibility but that there was no supporting bloodwork at this stage. If thats the case then its time you started getting tested again especially as it was mooted by your ex rheumatologist.

As Katharine says, you could use the Find a Doctor forum here to ask for recommendations in your area of a good Lupus specialist.

In the meantime I hope you are keeping a written record of all those symptoms? If not start a diary today. Also of course any photos of rashes etc will help.

Most definitely push ahead Jen. You only have one life. Giving your health diagnostic journey a fresh impetus will help lift your spirits as well. It always feels good to be 'doing something'. It makes one feel much more empowered.

Let us know if we can help in any way.

Much love and strength.
Joan:rose:

 

[onetay]

You can't give up there is someone out there to help you. It took me 2 years to get them to say lupus. i am no doctor but to me it sounds like you are on the right track with the lupus. We often have to get our doctors to listen, we shouldn't have to but keep looking for the right one for you.
Tammy

 

[LolaLola]

Hello Jen,
Sorry it has been so bad for you. You DO need to be helped. Please when you can screw up all your courage and see another Rheumy, one who specialises is Lupus and will treat you with courtesy. Don't shut yourself off from us.
x Lola

 

[Jen28]

Thanks everyone!

I am gonna press on. I've got to get over this stuff from the wreck 1st. The Ultram is still working!!! I'm gonna start PT this week. Thanks so much for the encouragement & kind words. I just didn't want to waste my time & emotions or the time of a dr. that don't give a crap anyways. I will search out another rheumy after speaking with you guys. Thanks again! Hope everyone is having a wonderfully blessed & pain free weekend!
Jen

 

[Joandublin]

Good for you Jen. Do your best to separate out the emotions of all this from the practicalities. (Easier said than done I know). You have something wrong with your health and you need to find someone who will work with you to discover what that is.

When you do seek out another Rheumatologist, plan your first meeting with them. Make sure you let them know that you are determined to find out whats wrong no matter how long it takes. Dont forget to tell them how it is affecting your quality of life and that you just want some sort of normality back again.

Best of luck!
Joan:rose:

 

[kcmmem]

pre lupus

My rheumy said that I have uctd possibly leading up to lupus. It took him almost 2 years to finally come up with that. Then I moved and the next rheumy said nothings wrong. I am about to see a new one. I guess my answer is that yes, I think you can have pre lupus. It is like having positive symptoms with unremarkable labs and positive labs with no symptoms. Or having lots of symptoms and nothing conclusive to link it to . If I am correct, Lupus is somewhat of a diagnosis of exclusion anyway sometimes. I am kind of in the same boat that you are. Hoping and praying that my new doc believes me and spends more than 5 minutes with me before telling me that nothing is wrong. I am not a hypochondirac, I just know there is somthing going on. I am 24 and I can barely focus some days from pain and fatigue. That isnot normal. Just hang in there. Don't give up

 

[Maia]

kc: lupus is not a diagnosis of exclusion. There are specific signs, symptoms, blood test results, biopsy results, etc. that are used to diagnosis lupus. Are you familiar with the ACR criteria? They are posted on the main website, and in several other locations on the internet.

Fibromyalagia is also not a diagnosis of exclusion as it has a set of signs and symptoms (like requiring a certain number of tender points in specific locations on exam) in order to be diagnosed.

One thing that is still a diagnosis of exclusion is Chronic Fatigue Syndrome.

 

[Jen28]

I'm not well

All the clinical signs point to Lupus. All the blood work came back negative. I am at the point that I truly believe that I will never get a dx. I just figure at this point that having a terminal illness would be a good thing for me. This is totally selfish reasoning. In sickness & in health. I don't think that my hubby & I are going to make it. He will take the kids from me. He's evil deep down inside. If I were to die it would be good for me because I wouldn't have to live without my children.
On the other hand, I wouldn't want my children to have to suffer through the loss of a parent. I lost my step dad when I was only 4. Luckily I don't remember him much. He was however the only father I ever had.
I have not been on Cymbalta for 5 weeks now. I don't think that depression is the problem that I am having. You probably think I'm crazy for saying this because I am wishing a terminal illness on myself. Not being on the Cymbalta I am having a hard time putting up with my very selfish husband. I was more numb to his selfishness on the Cymbalta. The Cymbalta was not helping me though. I was on it for 17 months & my mood was numb & I was having issues with my heart that were actually anxiety attacks.
Anyhow, I'm just not good. I have not intention on seeking any more help. Since the wreck 5 weeks ago, I have been to the dr.'s office 4 times, ER twice & PT twice. i am so sick of dr.'s. I was before the wreck & I just don't have any motivation to go back. I had already wrote dr.'s off then that lady ran a stop sign. My life has been upside down ever since. Can I please get off this roller coaster?

 

[chazown]

Not well

I haven't posted much on this message board, although I read it quite often. Your desperate situation made me want to reach out to you. I just want to give you a big hug and tell you to hang in there. I've been where you are. I have had the selfish husband, the battle of the doctors and diagnosis, and have even gone through a divorce where I lost custody of my kids until I could find someone to help me fight for them again (at no cost) and got them back. Sweetie, non of it was easy, but it is all temporary. That's the main thing to remember.

Your kids need you. Take one day at a time, even one hour at a time if you have to. I'm praying for you.

 

[Jen28]

Chazown

Thank you so much for your words of encouragement. I feel so bad when I whine like that. My cousin's (who happens to be one of my best friends) husband was killed in a car accident Saturday morning. He was also my 1st love.
Things such as this make you look at life in a whole new way. My husband may be selfish & inconsiderate but he's here on earth with me & he does love me. I feel like I may never get a dx. Until then I will just have to manage my symptoms & be my own advocate.
I am so sorry to here of your struggles. Another reason I feel so bad for whinning. There is always someone out there that needs your love & encouragement. Take care of yourself. You are so blessed to have your children back in your life. I want to kill mine sometimes but I know I couldn't live without them.
Jen