New fibro patient

Symptoms & Treatments
1

Hello!

My second rhuematologist has diagnosed me with fibro after my first rhuemy thought it was lupus. I don't know who's right and that is sooo frustrating! I was taken off Plaquenil and put on Lyrica. I've been taking lyrica for 5 days and haven't noticed any improvement yet. I have noticed a burning sensation in my knees. Is that part of the fibro territory? The fatigue I get is overwhelming! I'll be going along in my day and all of a sudden like a huge heavy blanket the fatigue over takes me and I am forced to lay down. The fatigue also makes it hard to even think, like my brain is sleeping. What is that about?? The rhuemy's I've seen are not educating me on symptoms, just push drugs. I'd love to know what others are dealing with and what I might expect. Thanks so much...

Rosie

2

Hi Rosie,

I know little to nothing about lupus but the burning pain you're experiencing and the great fatigue are all classically fibro, I'm sorry to say.

Lyrica does seem to take a while to kick in. Also, my GP started me on a baby dose (75 mg) which never did much to help the pain. My pain mgmt doc upped it to 100 mg, which has helped. And she will up it again. So it's possible that your doc is starting out conservatively and may raise it once you're on it. Do be aware, though, that Lyrica can also cause dizziness (as does fibro.) It does get better after several weeks.

It's good that you've come here. I think you'll find a lot of good people and resources. We all know what you're going thru and will try our best to help you with our own experiences.

Hugs,

Petunia

3

Hi Rosie,

Welcome to the group, Lupus is known as the great imitator, so this Rheumy doesn't think you have it, BUT that does not mean he won't continue to look for it. I have SLE on an Overlap Syndrome diagnosis, that means there are several autoimmune diseases that I have several symptoms of, but I do not HAVE the disease. I am constantly 'watched' for them though. It is not a bad idea that this present Dr is cautious enough to make sure you have Lupus before administering drugs for it!

I take Lyrica for Sciatica, this is a very specific nerve pain in my left leg, so it is easy for me to know when the Lyrica is helping it because it is in one place only. It does take time for Lyrica to work and for you to adjust to it, and to take it for widespread pain makes it more difficult to determine if it is helping and how much, because how we feel fluctuates rapidly.

Though I measure it's success by how that upper left leg feels, it does also help nerve pain throughout my entire body.

Fatigue is a tough one, we all battle that. Check with your Dr about good vitamins that may help or possible vitamin/mineral deficencies. My Chiropractor is my vitamin Guru, all of the DCs are brilliant with vitamins and warn against wasting money for grocery store vitamins, mine told me to throw them away, they were worthless, though some of you may have found a good quality one there, take them along, let them decide.

My Rheumy is the one who explained the 'brain fog' to me as "pain, chronic pain and lack of sleep" as the cause.

There is much to be learned here about Fibro, but I can only encourage you to be your own advocate and find all you can about this condition. Knowledge is power, fibro is too complicated to explain in the time a Dr has to examine you. Google and Ben's friends will teach you much if you are willing to spend the time.

Lyrica is for nerve pain, it will help you with that.http://www.emedicinehealth.com/fibromyalgia/article_em.htm This will give you some general information.

Welcome to our family, hope that you get the good care you deserve so that you can begin to feel better. Please know that I am not a Doctor, just a fellow patient.

Hugs,

SK

4

Ok, now I feel like I'm losing my mind. I received a note from my general doctor stating that a blood test she preformed came back abnormal. It was a sedimentation rate test( a test that looks for generalized inflammation) and it came back at 35 when 0-20 is normal range. Now when she preformed that test, that was the week I had recurring fevers, crusing fatigue and lots of joint pain. She felt it was a lupus flare, so she gave me steroids and I felt tons better! But now, this new rhuemy tells me I don't have lupus but fibro. From my research, fibro doesn't cause this rate to elevate. So who's right? Are both my rhuemy's right? Lupus and fibro? AAARRRGGG...I'm so confused. By the way, I'm taking 50mg of lyrica 3x's a day

Rosie

5

Um, well, now that's an interesting turn of events. I know that sed rates signify inflammation, as you state. It's not my understanding that fibro would give you an abnormal sed rate. Mine isn't abnormal.

This is from the lupussite.com:

SED Rate:

Normal Range = Male: < 10. Female: < 15.

A marker of non-specific inflammation, tends to be raised in lupus.

So normal SED for a woman is under 15, and you're sitting at 35. That's quite a bit elevated. And the lupussite states that lupus does elevate SED rates (as do some other illnesses that your doc doesn't suspect, which is good.) And it seems that SED rates usually are higher in people during flares, so it's good that you were in flare and this high rate was caught. What about your ANA? Is that also elevated?

If I were in your shoes, I'd def. want an explanation from my doctor as to why he suspects fibro over lupus, unless you have both, which is certainly possible. Oh yes, indeedy, it is. But you need to get clarification so you know what meds to be on, what to avoid (sunlight?) etc. Because it's certainly possible that you have both, although I'm not a doctor or any kind of medical person, so don't want to make any kind of medical pronouncement.

GOOD LUCK to you! I'm hoping you get a good, clear answer this week and a plan of treatment. You are always welcome to come here, even if it's lupus and not fibro. I'm sure we share a LOT of the same symptoms and problems.

Hugs to you,

Petunia

PS: I used to read Lupus discussion boards, thinking I might have it, and I just remembered that fevers seem to go hand in hand with people with lupus. I don't think that's true of fibro people, though.

6

I'm wondering if anyone out there knows of a good rhuematologist in Charlotte, NC? If so, please pass it along :)

Rosie

7

Google:

Rheumatologist Charlotte NC

or else

Rheumatologist fibro lupus Charlotte NC

(you can use one or both terms)

then when you get names:

Google the doctors name and add the word "ratings" or "reviews"

I found a good rheumy this way, after reading the reviews.

8

Normal SED rates can differ depending on the lab. My rheumy also told me that the older we are, the higher our normal SED rate will be. Mine was 27, which I though was high and he said that he doesn’t get worried until it is in the 50s or above as it can be different on different days depending on what’s going on, the lab you use, your age, etc. It’s worth a discussion with your doc and maybe a repeat test.

9

Oh, that's good to know. See, like I said, I know nothing on the topic. Shouldn't have even have offered a bit of an opinion. Glad you spoke up MBP. And mostly,it's important for Rosie to talk to her doctor and see what he/she thinks.

10

Let me see if I can get someone from the Lupus site over here to talk to you, Rosie!