Fibromyalgia Community

An,

No one knows what causes fibromyalgia, so no one knows how to treat it.

Lupus is an autoimmune disease like rheumatoid arthritis. Autoimmune diseases are treated with things like prednisone and other corticosteroids.

The so-called experts tell us that fibromyalgia does not progress: it does not get steadily worse and/or attack new areas of the body. Anyone who has read the posts here knows what a crock that is.

Lupus, on the other hand, is known to attack many different organs in the body. It is more than a simple butterfly rash on the face. It can kill you. Slowly. Over many painful years.

There are treatments for lupus. Make sure you are getting them. Get better. Avoid complications and consequences.
Live.

In the meantime, follow the tips here to help you with your FM. Some work for some of us. Others work for others of us. Until a true cause is found, there will be no cure. But we can alleviate many symptoms while we wait for that cure.

Towards those better days,

BetteK

It is not uncommon for labs coming back showing the high ANA's saying Lupus, but the way I understand it is they can be false positives.
I would think it would be wise on the Drs. part to definetely confirm Lupus before startying meds for it.

Did you get a second set of tests and or an other opinions? You would be better off not having lupus, of course.

A diagnosis for Lupus can take a long time. It kind of has to be "caught in the act," blood test wise. There are more tests for Lupus than the ANA. I assume they will be run if you have a lot of the typical symptoms.

FM is usually a diagnosis of exclusion. I hope you are getting treatment for your FM symptoms. It can be so debilitating.

It is interesting that you had such a bad reaction to those shots. It does sound like an opinion from a neurologist is in order. I wouldn't wait too long either. Numbness is pretty serious, at least I think it is.

I hope you will feel better in time.

How soon after the shots were these labs drawn?

As above one is inflamatory disease the other not. Our symptoms intertwine and are difficult to diagnose. My thought for you is to see more doctors and get more opinions. Have your labs rechecked and make sure they are aware of the antrax ( you really got an anthrax vaccine: why?)

This would be my course....more is more here....

Getting educated in both conditions would be next after you have been validated by another physician. Good luck, Nancy B

Well they were combined one in each arm, an anthrax in one arm and a tetanus in the other. I've had tetanus before with no problems it's actually more complicated my head swelled or felt swelt up and had minature convulsions like my head was shaking after. I felt flulike hours to a day later and just have felt numb since. I was a deployed military. It's now been 2 yrs and this is what they are coming up with. Before they would never even have dreamed of testing for ANA. But I've been complaining now for 2 yrs, a psychologist even said he didn't think I could be in this much pain and complain of so many issues. Well looks like he's wrong. I think they thougt I was making this up. At times I felt crazy but decided to stick to my gut and know I've never been crazy. The rheumotolist ran more tests following but says everything is fine, with possible fibromyalgia. Though the body's ana blood test was off the charts just like my body feels inflamed and in severe pain. My bones and joints feel stiff and lock up alot, sometimes parts just immobile. Too painful to walk and extremely exhausted. I can't even think my head is usually numb in pain. Any medications make the condition worse. Better off with tea, some ben gay or massages. But overall has gotten worse.

The neuro is clueless he heard my story and said just workout. I'm like he has no idea how worse excercising makes the condition. Any exertion even mental exertion wipes me out to bed rest for days! It's pretty bad.
Well they were combined one in each arm, an anthrax in one arm and a tetanus in the other. I've had tetanus before with no problems it's actually more complicated my head swelled or felt swelt up and had minature convulsions like my head was shaking after. I felt flulike hours to a day later and just have felt numb since. I was a deployed military. It's now been 2 yrs and this is what they are coming up with. Before they would never even have dreamed of testing for ANA. But I've been complaining now for 2 yrs, a psychologist even said he didn't think I could be in this much pain and complain of so many issues. Well looks like he's wrong. I think they thougt I was making this up. At times I felt crazy but decided to stick to my gut and know I've never been crazy. The rheumotolist ran more tests following but says everything is fine, with possible fibromyalgia. Though the body's ana blood test was off the charts just like my body feels inflamed and in severe pain. My bones and joints feel stiff and lock up alot, sometimes parts just immobile. Too painful to walk and extremely exhausted. I can't even think my head is usually numb in pain. Any medications make the condition worse. Better off with tea, some ben gay or massages. But overall has gotten worse.

Healthy D,

If you have fibromyalgia, you will find that you have wierd reactions to many things. One of the things we something is multiple sensitivities (chemical from smells, skin sensitivities to touch, reactions to things like the dyes in your meds, and the list goes on and on).

One day you can walk in the sunshine. The next day sunlight gives you an instant rash. One day you can drink coffee. The next day your bladder cannot stand a drop. One day you will be constipated. The next day you'll have the runs. One year you'll have migranes. The next year, they'll be sinus headaches. One day, God forbid, you'll have both and hurry to the E.R.

The point is that you will have many different symptoms over time. Your nervous system is effecting and affecting your whole body. Some of these things will go away on their own. Some will not. Some are things you have to bear. Some things you jolly well better get checked out NOW. (Think chest pains. They could be from the corticostal muscles between your ribs, but they could also be from your heart. You get those pains checked out immediately.)

If you have FM, you will be in the doctor's office a lot, especially at first. Then you will have a time when the pain and fatigue levels are managable and you won't be in the office as much. You will also learn when to wait and see if it goes away tomorrow and when to get in today.

As you read the posts from all of us here, you will be astounded at the variety of quirks FM has. And you will be amazed at the wonderful people here who can help you get through this one day at a time.

Towards better days,

BetteK

BetteK
Is fibromyalgia also an autoimmune disease or not? The tests were for testing autoimmune disease? He said there are no tests for fibromyalgia? So if I tested positive for lupus then I must have lupus you would think? Negs?
Thanks!

HealthyD,

I don't know enough about Lupus to answer your question. The people I know with Lupus were diagnosed about 10 years ago. The testing is probably better now, but trust Nancy B
on this.

The thing about fibromyalgia is that you can have ALL of the tender points, pain on all 4 quadrants of your body, and have had the pain for more than 3 months. Those are the criteria for fibromyalgia. But even if you meet all those criteria, you have to have a whole bunch of other illnesses ruled out before you get the diagnosis of FM.

Given your current diagnosis of Lupus, it would take a very brave doctor to give you a diagnosis of fibromyalgia. Yes, you can have both at the same time, but since Lupus has recognized treatment protocols (along with long-term consequences if it is not treated) your doctor will probably be most concerned with your Lupus.

Once the Lupus is treated and under control, your physician can address any lingering symptoms. At that time, she will be better able to address the issue of FM.

My friends who have Lupus DO also have FM. They are being treated for both. But the Lupus was addressed first. It can KILL you. Fibro just makes you wish you were dead--and only on bad days.

BetteK

Hello and Welcome An_250674. I'm sorry that you've gotten a DX of Lupus. I'm glad that your Dr. has you in treatment and I hope that you will feel well quickly.

Although I am no expert on Lupus I thought I'd jump in here with a suggestion instead: first and foremost after getting any DX you should google everything you can about it. And if the DX is about something long term ALWAYS get a second opinion!



My friend was first told by her PCP that she had FM but thought it might be something else, so she then had blood tests done. FM won't show up on blood tests, and the test showed she had Lupus instead of FM. She was refered to a Rheumy and she had a second set of blood work done to be sure and they too came back showing she had Lupus. There was a 3 month gap in between tests. Her Rhuemy can't say for sure but he thinks she got Lupus from having Cimo treatments for 2 differnt Cancers she's had over the years.

Because Dr's understand Lupus so much better today than they once did and have so many ways to treat it the outlook for those with Lupus is 100% better than it was even 10 years ago. My friend is an example. She has been in trreatment for 4 years now and is doing very well.

Please come back and let us know how you are doing.
Gentle hugs to you, Linda R