I am new to this board. I have posted on the fibro board previously. While chatting with others on the fibro board I have been researching lupus.

Haven't been officially dx with anything yet. I have heard everything from fibro, lupus, scleroderma, and connective tissue disease from current doc. I have had fatigue and pain for at least 3 years. I have had blood work done and my ENA panel has always come back with a positive antibody. It has been inconsistant, each time a different positive (other than centromere which has been positive since Oct 2005.) Docs not convinced since my physical symptoms and exam doesn't fit the profiles of any of these diseases.
So, he keeps saying its probably fibro.

I have been on NSAID's for pain for at least a year now. They only take the edge off not relieve the pain. I am going to see a new rheumi and was thinking that maybe the pain meds might be masking my symptoms. So, I stopped taking them just to see if anything changed. That was a week ago.

#1 Situation : A couple of days after stopping my pain meds I got a severe headache/migraine and it has come and gone since(floating around my head). I have been in bed for the last two days. I started thinking about the last time I had a headache like this and it was over a year ago. Before I was but on the NSAID's. I would get headaches like this but I thought they were tension or sinus. Migraines are associated with lupus, correct? Has anyone else experiences anything like this? I started taking my pain meds again today to see if they would help - nothing yet.

#2 Situation: I have had alot of problems with tight muscles and never being able to stretch them enough to relieve the tension. It was suggested that I drink more water. So I started increasing my water intake in hopes that it would help my muscles. Instead I have been experiencing an increase of heartburn and acid stomach. I assumed that it was my stomach adjusting the acid level due to the increase in water. Well it has been since January and stomach still acting up. I thought it may also be sensitivity to the NSAID's (have had problems with that before) so part of reason for stopping meds. While off the meds and experiencing the headaches my stomach has gone haywire. I wake up in the AM feeling shaky, I eat, feel nausea, then IBS kicks in. Have had problems with hypoglycemia and IBS in past but seemed to be under control until now. Have tried taking over-the-counter acid reducers and they are somewhat helpful. Is this a symptom that I am not aware of or just an extra?

#3 Situation: I have seen people talking about rashes. I don't have the facial rash assoc with lupus. I have had (for over the past year) dry, circular, extremely itchy, patches on my side. I thought it was an allergy or break out of some sorts. I have tried hydrocortisone creams, changing lotions and laundry deter but the rash still comes and goes in the same general area. Told my rheumi (he didn't even look at it) said it wasn't related. Since I stopped my pain meds a week ago I have gotten more of these patches and they have spread to my arms. I feel like a giant itch all over.

Sorry this post is so long. Tried to summarize. Any sugguestions would be greatly appreciated.

Hello and welcome! I also struggled for decades with headaches & IBS. Neither are included in the ACR criteria because they are not "specific enough", but it's certainly possible to have these problems in lupus and probably in some of the "close cousins", too, I suspect. (But obviously I'm just a patient.)

Rashes in lupus can be lupus-specific, e.g., butterfly, discoid, subacute cutaneous, bullous, etc. These are mostly non-itchy, or so the rheumie/authors say. However, people with lupus are thought to be more prone to other itchy skin conditions, like hives, for one. Have you ever seen a dermatologist for these itchy rashes, to have them examined and biopsied? Also, I've read that steroid ointments can dry and thin the skin, which can actually make matters worse.

Do you have an appt. set up with the new rheumie? Can you get copies of all your old test results together to take with you, or maybe even fax or deliver them ahead of time? When I switched rheumies, I was asked to fax in advance a biref lifetime medical history in my own words. Even if you aren't asked to prepare one, you could take your own notes to help answer questions.

There are several excellent lupus hardcovers in most bookstores & libraries. Dr. Daniel Wallace covers an amazing amount of ground. In one chapter, he describes how certain test results and symptoms can help to distinguish among the similar-but-different conditions, like scleroderma, lupus, RA, myositis, etc. He also discusses some scleroderma-related disorders, like MCTD, which has "crossover" aspects.

You do have my sympathy. I was resolutely ANA-negative but finally turned positive for anti-Ro, i.e., NOT a classic presentation. Yet my lupus-specific rashes alone should have provided answers. The drs. I saw locally just weren't up on varieties & subtleties. So I hope you keep pressing on until you get the help you need. And I hope you keep posting here. Thinking of you & sending my best wishes! Bye for now, from Vee

Thanks for the encouragement.
My appointment is next week. I have a copy of my tests and I got a copy of Dr Wallace's book. My test results are not stated/look the same as how the test results are show in the book. I have also looked at the web site that was suggested at the top of the board and that didn't help. I also looked at Dr Wallace's website which is sort of a scaled down version of his book.
I have read alot of things (books, websites, boards)that state similar symptoms to my situation but don't match exclusively. I have been alittle confused by it all and hope that I can sort it out next week at my new rhuemi appoint. I know there are more tests that can be run than the ones I have had so hopefully the new rhuemi will be more investigative.

Hi, Gunner. Re: test measuring systems: There are different systems in use, based on different "units". It IS frustrating when you find a good text or article but the units cited don't match what was used on your own tests.

As for symptoms, people don't, as a rule, have ALL the possible symptoms for any of the diseases in the lupus "ballpark". Plus symptoms can vary flare to flare. Hopefully something considered truly "defining" will show itself soon.

So good luck with your appt. next week. I hope you get off to a really good start with your new rheumie. With my best wishes to you, Vee