Just told I have FM..does this sound like it? - Fibromyalgia Message Board

Kraftster · 07-07-2001, 09:09 AM

Hello there! My doctor just told me a couple of days ago that "he thinks" I have Fibromyalgia. He did an arthritis panel blood test to rule out arthritis and lupus. He felt me in a couple of places..but I know he didnt check all the "points". Here is why I was at the doc:

I have felt sick ever since I got back from my cruise in March. It started with me waking up with a "red" face and feeling sick..my face looked flushed..it still does everyday! The doc says he really doesnt see it. Then my stomach started hurting..( I have GERD..but this felt diffent)..doc did an ultrasound of ab (gallbladder, kidney..) nothing wrong. Then I started getting other wierd symptoms...like dizzyness(faint feeling) ..nausea..arms felt "heavy". Then about 1 1/2 months ago I had an instance where I had palpitatins and a high heart rate of over 130 resting. Blood pressure dropped alot when standing. Went to ER and they did EKG and bloodwork all fine. I went on vacation a couple days after that and picked up a urinary tract infection (yeah)...and they put me on Levaquin and some stuff that makes your urine orange. The day after I started the meds I started having pain in my upper back..kinda a poking pain. I told the doc but they said "oh it might be muscle pain" and kept me on..no upped the dose from 250 to 500 mg. Since then my muscles, joints, bones..Im not even sure what..have been hurting. Especially my upper-back, my feet, hands, and the front of my feet above the ankle. Sometimes my left leg kinda aches too. I have been kinda tired and weak lately..but that was more intense last week than it is now..that seems to be going away.

I have never ever had muscle, joint or any of this type of pain like this before this episode. In fact..just before my cruise in March I had lost weight..had stopped eating bad..and was doing exercise 30 min a day on the treadmill! I felt Great!!

Do you all think this sounds like Fibromyalgia to you? Again, this muscle pain all started about 3 weeks to a month ago.

Please let me know what you think. My doc has put me on Paxil and Ativan (he thinks Ive been anxious lately...humm, I wonder why)

ANy of your wonderful opinions would help..but I do tend to have negative or pessamistic outlooks..so please be gentle!

Michelle

asil · 07-07-2001, 10:00 AM

well i would say possibly so, i started going through stuff the other day and found an old bottle of pills the doc. gave me for diziness and my stupidity i tossed it in the trash so i am thinking this darn thing was starting then, but about a year ago my back started hurting and i just thought it was my cycle but after the pain got worse and my legs were hurting and my arm went nuts on me (this was a period of abot 3 months in a row) i finally broke down and went to the doc, he did all sorts of tests and even did a cat scan from my migrains to make sure i had no tumors but everything came back ok so went to a reumy in okc and he came to the conclusion thjat i have f.m. what a blow that was i am still having a hard time believing it but the pain is sometimes unbearable even with the meds.i also turn into a horrible person if i loose control , but the people here on this board are truely unbeilievable sorry meds are taking effect for my spelling they are really supportive and full of advice i love to read all the posts on here if i am able to sit very long, i would suggest getting a second opinion and go to a reum. specialsit i hope you find some answers keep in touch and let us know how thinghs are going, god bless .

Valerie · 07-07-2001, 10:09 AM

Hi Krafster! Am wondering where you went for vacation. Was it somewhere tropical and have you been to a tropical disease specialist? Have you been tested for Lyme disease, mycoplasma infections, babesia? These infections cause symptoms similar to FM and are hard to diagnose. What symptoms did you have prior to this, if any? Trouble sleeping? Restless legs? Prior UT infections? Brain fog? Possibly growing pains as a child?

So sorry to hear you are feeling so punk. FM is a "rule out" diagnosis, but you may need ALOT of further testing to make sure.

Take care and welcome tot he board.

Val

Kraftster · 07-07-2001, 10:31 AM

Thanks so much for responding! I was on a cruise to Cozumel, Jamaica, Aruba and Curaqao. And I did get a wierd bite on my ankle. It was only there for a couple of days and didnt really swell. No "bulls-eye" look to it..just some red dots. I never felt sick while I had the bite. All these symptoms started about 1 month after the cruise. I mentioned Lyme disease to my doc..but he didnt seem interested and said that the tests can come back false-positive and false-negative. I put in a call to the Center for Infectious Disease to see if Lyme disease can actually be picked up in the Caribbean. I have to call back Monday. I have never heard of the other things you mentioned..but I have had my bloodwork done about 8 times..so I dont know if any of those would show up in simple blood-work tests. I have also had chest xrays, a 24 heart monitor and an echocardiagram because of the palpitations and heart rate. ( I do have Mitral Valve Prolapse..and Ive known that for about 2 years) Anyway, I have never had "growing pains" as a kid..always active..never any real muscle pains or anything. Like I said, this all really started right after the cruise..with the muscle/joint pain the newest symptom of 3-4 weeks. I guess I should as my doctor to refer me to someone who knows more about this. He just keeps saying that he thinks I have mild depression and anxiety. That I have too many symptoms at once. I dont know what to think of him anymore.

Where would I find a "tropical disease specialist"??

Thanks again!

Michelle

Valerie · 07-07-2001, 01:21 PM

Hi again. Boy, I really don't know where you'd find a tropical disease specialist, but it just bothers me that you didn't have many FM symptoms before the cruise. "Anxiety and depression" or FM are often the diagnoses we get when a dr. is stumped. I suspect you could call the CDC or the National Institutes of Health to see if they know of specialists, or Johns Hopkins or any other major medical center/school, Mayo. They may be able to refer you to someone at their clinic who might know of someone closer to you. I'd probably start with the CDC, tho. I don't know that these infections would show up in normal blood tests. I'm really speaking without any kind of expertise here, but it's just too strange that this all came on at once. I do want to encourage you to keep asking questions. There are some good labs out there that do a better job with Lyme testing than others, as well as have the ability to test for babesia and other infections, so maybe you can do some web searching on Lyme and will find one that you could encourage your dr. to use.

In the meantime, you could consider taking undenatured whey protein. It is an immune system booster by increasing glutathione levels in your cells, and the research that has been done has shown success in helping people to eliminate mycoplasma and other types of infections that stay with you, generally inactive, hiding in your cells. Immunepro, Immunocal and ImuPlus have all been researched that I'm aware of. There are other brands, too, but the key seems to be in the undenatured part of it.

Really hope you'll push for more testing.

Val