Question on Fibromyalgia...

[zakatak]

Hi there...

I'll try to keep this as short as possible. Six months ago in May, my wrists and neck started to hurt one night. By the next morning, they were stiff, sore and my knees started to hurt too. I felt like I turned 87 overnight. I went to the Dr., she ran some tests and then referred me to a Rheumatologist. I've been seeing this Rhuematologist since June, and each visit is talk, talk, talk... OK, we'll see you in 6 weeks. I was originally given the Medrol Pack and it worked wonders, but the pain came back a few weeks later.

Now, I've had a ton of bloodwork drawn and x-rays done, all negative. She was going with Inflammatory Polyarthritis (seronegative RA) all along but wouldn't officially diagnose me until 6 months into it.

Tuesday, I go finally to get a diagnosis. My knees are still bad (hurt walking up and down stairs), my neck is toast (can't turn it up, down, right or left or even YAWN without pain), my hips hurt when I get up, my wrists hurt, my thumb joints kill when I move them (i.e. hold a plate or drive), etc... You get the idea (88 years old now!). This is what she says (and by she I mean my PA - the Dr. hasn't seen me at all!)...

"All your lab work is normal, you aren't swelled so... you have Fibromyalgia."

Ummm... what? Where did that come from? Lack of anything concrete? So, I get home with my prescription for Cymbalta (an anti-depressant) and sleeping pills and look up the symptoms for Fibro. I HAVE NONE! NONE except fatigue. Extreme fatigue that can be with any other arthritic condition, too. I have NO concentration problems, no dizziness, no muscle pain and the best part is I have NO TENDER SPOTS AT ALL! Only when I move, and those are my joints not muscles. One of the key symptoms of fibro is that the pain gets worse when you relax and goes away when you move. My pain hurts when I move and isn't there if I'm not moving!

I am so not very happy right now! I have a call into the PA to make an appt to speak with the DR along with my husband (who also thinks the diagnosis is wrong). If I switch Drs, the wait is at least 4 months to see a new Rheumatologist. I've already been feeling crappy for 6 months!!

Grrrrrrrrrr.....

So, does anyone here have Fibro and can tell me if I'm way off or if you have joint pain without muscle pain? Also, what do the tender points feel like? Cause nothing hurts at all when I press anywhere, just when I move (or pick up a darn plate!).

Thanks for any insight while I wait for the PA to call back.

 

[dianeschlicht]

A neurologist is the best kind of doctor to diagnose Fibro. There are 11 specific points that they will press to see if it causes more than just pressure pain. If a majority of those spots do produce more than pressure pain, they will diagnose fibro. The spots are like the front of each shoulder, the middle of your forehead, each side of the neck etc. I don't remember where all they are. Unfortunately, the doctors dono't have good treatments for fibro, but I have gotten great results from neutraceuticals.

 

[Marseeya]

I have a DX of fibromyalgia and my symptoms sound a lot like yours. I feel old, my joints hurt, my hands and wrists hurt like a toothache. I'm very tired and just want to rest. A lot of that is from CFS, which goes right along with fibromyalgia.

I'm not an expert on it, by any means, but you definitely sound like you're suffering from the same thing I am. I don't have the pain "spots," and I do feel better when I rest as opposed to when I'm in motion.

However, one thing my doctor has told me is that you really need to boost your seratonin levels in order to feel better (hence the antidepressant your doctor prescribed, I suspect). My doctor has been right with that -- the more active I am overall, the better I feel overall. That doesn't mean feeling better right after a walk, but I do feel better if I'm walking more often. The hard part is getting moving when I feel so lousy. I actually felt as if my fibromyalgia was in remission for a couple of years since I started school, but I've been going through a lot of stress lately and all the symptoms have been coming back these past few weeks.

I hope you get answers. Update when you find out more!

 

[binny]

I have Fibro.


I have the hot spots pretty bad but I do also have the joint pain ( and lets not talk about my concentration or memory problems ) I dont know how much of my joint pain is Fibro though and how much is just what I had before gotten worse. I have always had bad knees but now when a high pressure ridge come in I can barely walk some days.

98% of the time I can deal with it though. Thankfully I either dont have that severe of a case or I am in denial because I just trudge through.




I took myself off all the medication, my doctor was a real drug pusher IMHO " Oh that hurts? theres a pill for that" I would rather deal with it my own way than to take as much as she wanted me too.


Anyway, I hope they can figure out what you have, its lousy to hurt all the time, Im sorry.

 

[Wishing on a star]

Lupus??? (doesn't always show with a positive ANA)

Problems related to HypoThyroidism (Hashimoto's)???
Yes, Fatique and Joint Pain are commonly related to Thyroid/Hashimoto's

Both of the above are autoimmune problems.

I think that people are quick to assume Fibromyalgia when simple test's do not automatically fit.

 

[Marseeya]

Problems related to HypoThyroidism (Hashimoto's)???
Yes, Fatique and Joint Pain are commonly related to Thyroid/Hashimoto's

Both of the above are autoimmune problems.

I think that people are quick to assume Fibromyalgia when simple test's do not automatically fit.

Right! I forgot to mention thyroid disease. That can be a real problem.

 

[luvwinnie]

First, prednisone will NOT help fibro since fibro is not inflammatory....but it helped you, RIGHT? I saw four doctors before someone finally helped me and dx me correctly. One rheum said I had fibro and tried to give me Paxil or Zoloft. I knew she was wrong. My initial dx was lupus-like connective tissue disorder. My only positive blood work was a high CRP that indicated inflammation. Pred. helped me immediately and then I went on Plaquenil. I later went on to develop psoriasis and psoriatic arthritis.

I highly recommend you see another dr. I know it's tough, but don't give up. PM me anytime.

 

[ducklite]

Lupus??? (doesn't always show with a positive ANA)

Problems related to HypoThyroidism (Hashimoto's)???
Yes, Fatique and Joint Pain are commonly related to Thyroid/Hashimoto's

Both of the above are autoimmune problems.

I think that people are quick to assume Fibromyalgia when simple test's do not automatically fit.

Lupus was my first thought as well. Good luck and hope you feel better.

Anne

 

[I Love Tigger]

I have been suffering pain and numbness/pins & needles down one side for 12 months now, was referred to a neurologist who wasn't very helpful, but ordered tests. I finally had a brain MRI a month ago and just got a letter this week to say it was normal, everyone said good news, but I'm still suffering and want answers also had lots of blood tests including RA & Lupus, but so far all negative. Also had a cervical spine MRI which does show minor degenerative bulging, so that at least explains the neck pain.

I asked my GP about Fibromyalgia and was told "oh thats what we call it if we can't find any other cause" but we need to do for tests first!

Now on a waiting list(currently seven months) for some electrical tests, hopefully early in the new year!

Hope you get some answers & relief soon , but it's so annoying how long you have to suffer before finding any answers!

Bev

 

[luvwinnie]

I LOVE TIGGER: You have to wait SEVEN months for a test?!?!

 

[I Love Tigger]

luvwinnie yes it's riddiculous, especially when some days I can hardly walk due to the pain in my feet

I had to wait eight months for my MRI, (I was told routine ones take 14 months) and that was only because my neurologist chased it up again in July. The worse wait was six weeks for the results, because the department is so over stretched.

I keep being told not to get stressed, but what do they expect with so much waiting??????

 

[imsorry]

When I was 33 I was told I had fibro. I had started feeling zoned out and exhausted, constant stiff necks and back pain. I spent three months in bed; they thought I had lyme disease. They said I tested positive for Epstein Barr but they didn't think that was causing my symptoms!

I had problems for the next ten years; then my legs started to bother me. I thought I was getting MS - they did a total body bone scan and MRI on my neck - nothing showed up. I saw a rheumotologist when my knees started hurting. She prescribed Ultram - did nothing for me. I self medicated with Advil for years until that caused gastritis.

After the first three months I went back to work - it was the hardest thing I ever did. They all pretty much told me I had to "learn to live with it" which I did. It is worse when the weather changes or I have stress. I wish I could tell you something more constructive - I take alot of vitamins and try to ignore it as much as I can.

I hope you find help - I thought they would have come alot farther since 1989!

 

[chell]

Hope you get relief soon. I have never heard of anyone with fibro who didn't have any pressure points at all. That is odd.

I have fibro and also arthritis. I've been on Cymbalta for a year now. My doctor just put me on a huge dose to get me through the winter.

Have you noticed if your pain is worse when you are more stressed out? That is another good sign that your problems are from fibro.

 

[zakatak]

No, my pain is the same every day it seems. Neck, wrists (when I type alot), thumb joints, knees, hips and lower back (in the AM).

Oh, and get this... at the end of summer, I developed this rash on both feet, inside edges and spreading towards tops. It was red, didn't disappear when pressed, spotty, not blotchy and not raised at all. Did not itch. Got redder in the heat! So, I go to my Rheumy and they are like, "I don't know". Alrighty, then. Thanks and here is your $20.

Nothing seems to add up to fibro, but I did just look up Lupus. Here is what I found:

Percentage Symptom

95% Achy joints (arthralgia)
90% Fever over 100 degrees F (38 degrees C)
81% Prolonged or extreme fatigue
90% Arthritis (swollen joints)
74% Skin Rashes
71% Anemia
50% Kidney Involvement
45% Pain in the chest on deep breathing (pleurisy)
42% Butterfly-shaped rash across the cheeks and nose
30% Sun or light sensitivity (photosensitivity)
27% Hair loss
17% Raynaud's phenomenon (fingers turning white and/or blue in the cold)
15% Seizures
12% Mouth or nose ulcers

I've had 4 out of the top 5 and a couple weird fever episodes to boot. Once, I got a fever of 102.5 suddenly (within 15 minutes) with no other symptoms and it then went down to 99s overnight and never came back. Then I had a fever of 99.7 for 9 days straight with no other major symptoms. Doc knows this... oh well.

 

[luvwinnie]

Highly recommend another opinion...I had to go to a specialist in NYC outside my insurance in order to find a good dr.

 

[kc73]

Could you find out from your blood tests if you had a positive ANA result?
The ANA test is used as an indicator, but there's no one thing that can diagnose lupus. Maybe it's a start?
I would definitely find a good rheumatologist, you'll want someone well-versed in autoimmune diseases, instead of a PA. When you think about it, 4 months isn't a long time compared with the many years you have left in your life. You'll want the best diagnosis, the best medicine available, etc. I'd switch doctors, if I were you!

I have systemic lupus (found out nearly 3 years ago), and many of the same symptoms you've described. Hang in there, whatever it turns out to be, I'm sending p & pd your way!

p.s. Maybe you should try NSAID's for your joints in the meantime.