May not be fibro ( medication not used for fibro worked)

Last week, in the middle of a really bad flare I became sick what with I thought was a really bad cold. After four days of pain from the flare and severe head ache and jaw pain I went to the local walk in clinic.

The doctor told me I had a really bad sinus infection, and that my ears were full of fluid. He asked if I had ever taken steroids for my arthritis (PSA). I said no, just other meds that I currently can not afford. I explained that I had been offered them when I had Probable MS years ago. I had a flare and the doc suggested it might be Lupus, because I had a positive ANA, and my symptoms were consistent with the disease. This was not a rheumy but a regular doc. She told me to take them and if I felt better it was indicative of an inflammatory or autoimmune disorder. I could not afford the medication, so I did not fill it.

So yesterday, I took the steroid shot because they told me it would get rid of the fluid that was keeping me from being able to breathe. At that point, I was so ill I would have swallowed poo for relief.

They gave me 10 mg, and waited a few minutes before they released me. As I was walking outside my hub said "the pain from the injection is going to bad, but it will fade". As he said that, I said this is nothing. If only you knew the pain I am in every day. As I spoke I realized all of the pain that had come roaring back once I quit my meds was GONE. Absolutely completely gone. The headache, the shoulder pain, I could move my right hand and wrist. Completely totally eradicated. Fog and fatigue gone. nada zip zilch. I did not feel like superwoman as they suggested, instead I just felt normal. Like I did years ago when I was not ill. Like I do when I have no flares. I can talk to my kids without snapping. I slept and woke refreshed.

The savella kind of worked, but nothing like this. So in short. I think the regular doc long ago might have been right. I may have Lupus. It would explain all the horrendous mouth sores followed by flares that are out of this world. The joint pain that is not arthritis, just sharp jabbing pain, and fatigue that would make hercules cry.

I am calling the rheumy this morning first thing. Wish me luck.

I know. Our pain is awful. I think it goes without saying that whether I have fibro, or Lupus that our conditions often mimic each other and the pain we live with is awful. I would not wish it on anyone. It took me by complete surprise. I was thinking I'd just be able to breathe, and not be using a glad bag full of tissue. LOL. I sat in the car on the way home, and I was just floored. I kept waiting for the effect to "wear off", instead it just kept getting better. By the time we had driven the 15 minutes to our home I was totally out of pain. (it was a shot) I know that steroids have been tested for fibro and did not work. To feel like this, is just a gift. My hope for all of us today is that we get such a gift and that it works!

Waiting to hear back from rheumy. Will let all of you know what they determine. The only downside is that unfortunately, the arthritic pain is slowly ebbing back, but still not as fierce as it was.

Post Edited (txcola) : 5/6/2015 7:44:03 AM (GMT-6)

Oh I agree, I think diagnosing diseases that are so much alike is difficult at best, and in my case and many others take many years. I got lucky. Having a medication such as this work so beautifully really confirms what it most "likely" is. I am just angry at myself for not "finding" the money so long ago. This could have been resolved much sooner.

Some antibiotics make me flare. I have to be careful. As for the short trial, why not? We've done so many other things that NEVER worked, and spent tons of money on testing etc. I can not see what harm it would do. In my case, it made all the difference and possibly led me to an answer. It's not to say I do not have fibro, I understand it often "hangs out" with other diseases, specifically autoimmune in many cases.

I highly recommend every one take a good quality pro=biotic.

Oh Sherrine thanks! Yes I agree. This is definitely a step in the right direction. You made me smile with the landscaping story. I cleaned my bath, did two loads of laundry, washed dishes, tons of work that had been piling up for weeks. All without a wimper or ounce of pain.

I am aware that prednisone is bad for your bones, and I need to consider that as I do have osteoarthritis as well. I am hopeful I can use it as needed to "crush" a flare before it lands me in a chair with a heating pad. I've contacted my rheumy and for now I wait for his call.

take care,

L

Just a note from the Lupus side of things --

Two negative ANA's does NOT mean you DON'T have Lupus! It also does not mean you DO have Lupus. Lupus is diagnosed by having at least 4 of 11 symptoms. A positive ANA may or may not be one of those 4.

Lupus is diagnosed and treated by a rheumatologist - a primary may be able to do a preliminary diagnoses, but you should be seeing a rheumy for treatment.

Prednisone isn't really considered a treatment - it helps curb inflammation, but treatment is generally thru Plaquenil (slows disease progression), Cellcept, Imuran, MTX, Benylsta, and/or IVIG.

I have fibro, depression, anxiety, and pre-diabetes as well as Lupus, have had for over 10 years. I read all over these boards - just primarily keep my posting in Lupus & Sjogren's.

Cheers, hope everyone feels better soonest!

Update--- spoke to nurse at docs office this am. ( one positive ANA here, done at highly respected research hospital in DFW) two negatives afterwards, done at regular lab.

Doc wants to keep me on prednisone for the time being, I was told by nurse that it's "possible" that it could help fibro, ( she's not the doc, and I know she's choosing words carefully). I know that fibro is not inflammation. So I will do test with pred to rule out fibro, and YES I do have the majority of the symptoms of Lupus, and have for a very long time. I've had other docs tell me they thought I had it, but never a rheumy. This one is good, he diagnosed my p arthritis that had been undiagnosed in Texas.

As much as having to take steroids for a while scares me, I'll do anything to finally get a definitive diagnosis that may give me my quality of life back. Or at least stop this obvious progression of symptoms. I never understood how everyone says fibro is not progressive, but I kept getting worse. When he diagnosed arthritis, I had an AHA moment, but still had no answers for some of the other "stuff". Now it seems like it finally might have an answer.

Thanks you guys for your advice and support. It means the world.

L

Sherrine-

Thanks for all of your advice and support. Like you I just want a definitive diagnosis, and am willing to let my doc do his job.

Thanks.

L

Mine are ulcers. I went to the doctor for them. He told me to take vitamin b-12 and they would go away, they did not. But yes, you can have herpes and fibro. They are two distinctly different diseases. Herpes is viral and can be dormant and flare much like an autoimmune disorder. There is some speculation that the herpes viruses are the common starting point for many diseases. For instance, chicken pox ( varicella) causes a herpes virus known as shingles.