Kraftster
07-07-2001, 12:09 PM
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
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
Sponsor
asil
07-07-2001, 01:00 PM
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, 01:09 PM
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
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, 01:31 PM
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
Where would I find a "tropical disease specialist"??
Thanks again!
:)
Michelle
Valerie
07-07-2001, 04:21 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
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
robste
07-08-2001, 01:54 PM
Kraft, if I were you, I think I'd go to another dr. for a second opinion, and this time, I'd emphasize the fact that while on the cruise you got some sort of bug bite, describe it in detail, and then the symptoms started a month later...I would think that's somehow all related, although I'm not a dr., so I could be wrong. My dr. also did all sorts of bloodtests to rule out problems...your dr. should definitely had done a lyme disease test no matter what in addition to various blood tests for thyroid problems.
Kraftster
07-08-2001, 06:31 PM
Thanks for responding everyone..I am going to insist on more testing. I just feel like I am pulling teeth with this silly doctor. I have had thyroid tests done 2x and those come back fine. I have my bloodword done many times..it always comes back fine..but I dont know if they are looking for parasites or wierd viruses. I was wondering..does Fibromyalgia cause any swelling? I have had pain in my joints..but also a wierd pain on the inside side arch of my foot that actually feels swollen. And my right hand feels wierd alot...the pinky finger and the ring finger...look fine..feel contorted. I know, sound wierd. I feel like I am falling apart. The pain I am feeling usually is in my back (upper mostly) in my hands and wrists and ankles..and occasionally in my leg or feet. But it is never so bad that I cant do things..just annoying at this point.
Anyway..I will tell my doc to do a Lyme diseae test..although Im still trying to find out if you can really catch that in the Caribbean. Doc says if its parasites I would have diareahha (sorry about the spelling) and I dont. Would a virus show up on bloodwork? I think I need a new doc!
Thanks guys... I appreciate all your opinions on this...Im not going to give up on the testing..believe me! :)
Does the pain that comes with Fibromyalgia get worse?? :(
Anyway..I will tell my doc to do a Lyme diseae test..although Im still trying to find out if you can really catch that in the Caribbean. Doc says if its parasites I would have diareahha (sorry about the spelling) and I dont. Would a virus show up on bloodwork? I think I need a new doc!
Thanks guys... I appreciate all your opinions on this...Im not going to give up on the testing..believe me! :)
Does the pain that comes with Fibromyalgia get worse?? :(
Valerie
07-08-2001, 09:46 PM
Hi Krafster. It does seem like an active infection would show up on a regular blood test with increased white blood cell counts and such. We'll need the medical types here to answer that question.
We had a thread here this winter about whether FM is progressive and the consensus pretty much was that it is, sorry to say. It comes and goes, however, with "flares" and then "remissions." New symptoms pop up, old ones disappear and then reappear. It's a very weird syndrome and no-one responds the same way to it or to the meds that are out there.
If this could actually be a first flare of FM, then you may want to look into the guaifenesin protocol. If you haven't been very sick up until now, and it is FM, you will respond quickly to the guai and may be able to nip this whole thing in the bud. You can read about it by doing a search on your browser for "fibromyalgia and guaifenesin" or just "guaifenesin" alone. Or, you can write to me at exiled2@yahoo.com and I'll send you some info about it. Also about the undenatured whey protein. I hope this is not FM, however.
Glad you will consider finding another doc. This one doesn't sound very responsive!!!
Val
We had a thread here this winter about whether FM is progressive and the consensus pretty much was that it is, sorry to say. It comes and goes, however, with "flares" and then "remissions." New symptoms pop up, old ones disappear and then reappear. It's a very weird syndrome and no-one responds the same way to it or to the meds that are out there.
If this could actually be a first flare of FM, then you may want to look into the guaifenesin protocol. If you haven't been very sick up until now, and it is FM, you will respond quickly to the guai and may be able to nip this whole thing in the bud. You can read about it by doing a search on your browser for "fibromyalgia and guaifenesin" or just "guaifenesin" alone. Or, you can write to me at exiled2@yahoo.com and I'll send you some info about it. Also about the undenatured whey protein. I hope this is not FM, however.
Glad you will consider finding another doc. This one doesn't sound very responsive!!!
Val
cioc1212
07-09-2001, 01:03 AM
Michelle,
Go find the post that says "New to board? Look here". There is a co-cure site with a list of FM specialists that was originally posted by Kim. Kim and I see the same doctor and he found an underlying condition with me,a problem with my brain. He did do very thorough bloodwork, including a test for malaria and several tests that the phlebotomist at my doctors office had never heard of and couldn't find in her book! Now THAT is thorough!
The fact that you don't have a history of aches and pains or ongoing medical problems, combined with an out of the country cruise DOES seem awfully suspicious and not like FM. I'd be concerned. This may sound weird but have them check you for heavy metal exposure,things like mercury and arsenic,I don't know what exactly but a full toxin screen. Also anything mosquito bourne and anything with spider bites. Try searching the web yourself(start with illness mosquito) and make a list of things that it might be or that you want to be tested for. You might also want to contact whoever runs your cruise to see if anyone else got sick when you did.
My laypersons experience from researching and reading,is that many(not all) people who are diagnosed with FM have an underlying condition. Do NOT sit down and give up, go find a new doctor and do NOT accept a diagnosis of "FM" until you are 110% comfortable that your doc has ruled everything else out. And I do mean when YOU are comfortable, not when he says HE is!
There's another post on here from some time ago, explaining the tests for Lyme, I'll see if I can find and pull it to the top for you, it was very interesting and very thorough.
Good luck and get moving, this doesn't sound very good and I wouldn't sit on it if I were you. Please post back and let us know how you are making out!
Rachael
Go find the post that says "New to board? Look here". There is a co-cure site with a list of FM specialists that was originally posted by Kim. Kim and I see the same doctor and he found an underlying condition with me,a problem with my brain. He did do very thorough bloodwork, including a test for malaria and several tests that the phlebotomist at my doctors office had never heard of and couldn't find in her book! Now THAT is thorough!
The fact that you don't have a history of aches and pains or ongoing medical problems, combined with an out of the country cruise DOES seem awfully suspicious and not like FM. I'd be concerned. This may sound weird but have them check you for heavy metal exposure,things like mercury and arsenic,I don't know what exactly but a full toxin screen. Also anything mosquito bourne and anything with spider bites. Try searching the web yourself(start with illness mosquito) and make a list of things that it might be or that you want to be tested for. You might also want to contact whoever runs your cruise to see if anyone else got sick when you did.
My laypersons experience from researching and reading,is that many(not all) people who are diagnosed with FM have an underlying condition. Do NOT sit down and give up, go find a new doctor and do NOT accept a diagnosis of "FM" until you are 110% comfortable that your doc has ruled everything else out. And I do mean when YOU are comfortable, not when he says HE is!
There's another post on here from some time ago, explaining the tests for Lyme, I'll see if I can find and pull it to the top for you, it was very interesting and very thorough.
Good luck and get moving, this doesn't sound very good and I wouldn't sit on it if I were you. Please post back and let us know how you are making out!
Rachael
cioc1212
07-09-2001, 01:12 AM
PS. trust your own instinct and your body and don't let them tell you that you are depressed if you aren't. I'd be a millionaire if I had a nickel for every time a medical "professional" told me that I was either depressed or stressed over the last 20+ years. Turns out that I had a major birth defect and brain/spinal problems. Fixable with surgery. DUHHHHHH! TWENTY YEARS!
If you don't think you're depressed, look your doctor straight in the eye and say v e r y c l e a r l y.... I am not depressed, I am SICK. Keep saying it till they shut up. I'm not kidding.
[This message has been edited by cioc1212 (edited 07-09-2001).]
If you don't think you're depressed, look your doctor straight in the eye and say v e r y c l e a r l y.... I am not depressed, I am SICK. Keep saying it till they shut up. I'm not kidding.
[This message has been edited by cioc1212 (edited 07-09-2001).]
Valerie
07-10-2001, 10:05 AM
Krafster, I know you weren't doing a triathalon or "exotic adventure sports" on your vacation, but I ran into this article this morning and it made me think of your situation:
Monday July 9 6:00 PM ET
Extreme Tourists Face Infection with Exotic Bugs
NEW YORK (Reuters Health) - Participants in extreme sports in exotic locations may place themselves at risk for exotic illnesses, according to the Centers for Disease Control and Prevention (news - web sites) (CDC), Atlanta.
Many athletes who participated in the Eco-Challenge-Sabah 2000 multisport expedition in Borneo, Malaysia, in August 2000, contracted leptospirosis after coming in contact with the Segama River, the CDC reports in the July issue of the journal Annals of Emergency Medicine.
``Recent increases in the number of persons participating in adventure sports and exotic tourism have led to infection with previously unusual organisms,'' the CDC writes.
``Participants in such events should be made aware of potential risks for exposure to unusual and emerging infectious agents, and their physicians should consider infection with these agents,'' they conclude.
Leptospirosis is a bacterial disease, usually spread by exposure to water contaminated with the urine of infected animals.
In humans the infection causes a wide range of symptoms, including high fever, severe headache, chills, muscle aches, vomiting, jaundice (yellow skin and eyes), red eyes, abdominal pain, diarrhea or rash. However, some infected people may be symptom-free.
The CDC recommends treating leptospirosis with the antibiotic doxycycline. If the disease is not treated, kidney damage, meningitis (inflammation of the membrane around the brain and spinal cord), liver failure and respiratory distress can result. In rare cases death occurs, according to the CDC.
While 304 people participated in the event, the CDC was only able to contact 158 of the athletes--126 of whom were Americans. The report notes that 109 of those contacted said that they had become ill. Of these, 68 met the CDC's case definition for Leptospirosis infection.
The race, held from August 21 to September 3, required teams of athletes to navigate their way across the tropical terrain of Borneo. All those who swam in the Segama were at increased risk for ingesting Leptospira bacteria, which are endemic in Borneo.
Many of the symptoms of the illness can be mistaken for other diseases, the agency notes. Leptospirosis is confirmed by laboratory testing of a blood or urine sample.
``Emerging infections are significant public health problems, and identifying these unusual diseases is a serious challenge confronting healthcare providers today,'' said Dr. Susan C. Stone, of the USC Medical Center, in Los Angeles, in a prepared statement from the American College of Emergency Physicians (news - web sites). Stone is the co-author of a commentary that follows the CDC report.
Previously the CDC has reported that a group of travelers who were white-water rafting in Costa Rica in 1996 contracted leptospirosis, as did triathletes who participated in a race in Illinois and Wisconsin during the summer of 1998.
SOURCE: Annals of Emergency Medicine 2001;38:83-86..
Monday July 9 6:00 PM ET
Extreme Tourists Face Infection with Exotic Bugs
NEW YORK (Reuters Health) - Participants in extreme sports in exotic locations may place themselves at risk for exotic illnesses, according to the Centers for Disease Control and Prevention (news - web sites) (CDC), Atlanta.
Many athletes who participated in the Eco-Challenge-Sabah 2000 multisport expedition in Borneo, Malaysia, in August 2000, contracted leptospirosis after coming in contact with the Segama River, the CDC reports in the July issue of the journal Annals of Emergency Medicine.
``Recent increases in the number of persons participating in adventure sports and exotic tourism have led to infection with previously unusual organisms,'' the CDC writes.
``Participants in such events should be made aware of potential risks for exposure to unusual and emerging infectious agents, and their physicians should consider infection with these agents,'' they conclude.
Leptospirosis is a bacterial disease, usually spread by exposure to water contaminated with the urine of infected animals.
In humans the infection causes a wide range of symptoms, including high fever, severe headache, chills, muscle aches, vomiting, jaundice (yellow skin and eyes), red eyes, abdominal pain, diarrhea or rash. However, some infected people may be symptom-free.
The CDC recommends treating leptospirosis with the antibiotic doxycycline. If the disease is not treated, kidney damage, meningitis (inflammation of the membrane around the brain and spinal cord), liver failure and respiratory distress can result. In rare cases death occurs, according to the CDC.
While 304 people participated in the event, the CDC was only able to contact 158 of the athletes--126 of whom were Americans. The report notes that 109 of those contacted said that they had become ill. Of these, 68 met the CDC's case definition for Leptospirosis infection.
The race, held from August 21 to September 3, required teams of athletes to navigate their way across the tropical terrain of Borneo. All those who swam in the Segama were at increased risk for ingesting Leptospira bacteria, which are endemic in Borneo.
Many of the symptoms of the illness can be mistaken for other diseases, the agency notes. Leptospirosis is confirmed by laboratory testing of a blood or urine sample.
``Emerging infections are significant public health problems, and identifying these unusual diseases is a serious challenge confronting healthcare providers today,'' said Dr. Susan C. Stone, of the USC Medical Center, in Los Angeles, in a prepared statement from the American College of Emergency Physicians (news - web sites). Stone is the co-author of a commentary that follows the CDC report.
Previously the CDC has reported that a group of travelers who were white-water rafting in Costa Rica in 1996 contracted leptospirosis, as did triathletes who participated in a race in Illinois and Wisconsin during the summer of 1998.
SOURCE: Annals of Emergency Medicine 2001;38:83-86..
Kraftster
07-10-2001, 12:56 PM
Thanks again everyone for your responses..I am calling my doc today to request a referal to see an Infectious Disease Specialist. Keep your fingers crossed for me that he doesnt give me a hard time!
Val:
You know something...while we were in Jamaica on our cruise..Ocho Rios...we did a tour where we mountain biked thru the "Jamaican Forest" and then we climbed Dunns River Falls. Now I dont know on a scale of 1-10 how difficult this bike thing would have been for someone in shape..but Im not in the best of shape and it was hard. VERY VERY bumpy..I remember my hands hurt so bad from the handlebars..and towards the end of the tour they gave us water to drink. I dont think anyone thought twice about that..duh! :(
I will mention the article to the doc..hopefully they will test me for that too!
:)
Michelle
Val:
You know something...while we were in Jamaica on our cruise..Ocho Rios...we did a tour where we mountain biked thru the "Jamaican Forest" and then we climbed Dunns River Falls. Now I dont know on a scale of 1-10 how difficult this bike thing would have been for someone in shape..but Im not in the best of shape and it was hard. VERY VERY bumpy..I remember my hands hurt so bad from the handlebars..and towards the end of the tour they gave us water to drink. I dont think anyone thought twice about that..duh! :(
I will mention the article to the doc..hopefully they will test me for that too!
:)
Michelle
cioc1212
07-10-2001, 08:12 PM
Hepatitis A,B,C is another test that is important. I was never able to pull the info on Lyme but there are two tests, a general one and a more specific, I think the more specific is the Eliza but I may have it backwards.
Good luck, I'm so glad I don't have to worry about referrals with my new healthcare coverage. I HAVE been known to go plant my tush in the doctors office and sit and glare at the staff till I get what I want...... ;)
Hopefully you'll have an easier time!
Let us know how you make out!
Good luck, I'm so glad I don't have to worry about referrals with my new healthcare coverage. I HAVE been known to go plant my tush in the doctors office and sit and glare at the staff till I get what I want...... ;)
Hopefully you'll have an easier time!
Let us know how you make out!
Valerie
07-10-2001, 11:17 PM
Michelle,
That's interesting about your mtn bike ride in Jamaica. There are all kinds of things you can pick up through your skin, too, in addition to drinking water or bug bites. I have a friend who picked up giardia in Costa Rica several years ago and it took a long time for her docs to find it, even tho giardia is very common, even here in the US. Hope you get the referral and find a good specialist.
Val
That's interesting about your mtn bike ride in Jamaica. There are all kinds of things you can pick up through your skin, too, in addition to drinking water or bug bites. I have a friend who picked up giardia in Costa Rica several years ago and it took a long time for her docs to find it, even tho giardia is very common, even here in the US. Hope you get the referral and find a good specialist.
Val
lj-111
07-13-2001, 03:55 AM
I drank the water in Mexico the entire 3 years I lived there..
I'm so stupid!!
lj
I'm so stupid!!
lj
Valerie
07-13-2001, 10:35 AM
No you're not, Lisa!!! My friend who got sick in Costa Rica was backpacking and apparently they didn't boil the water long enough, or their filter wasn't effective enough or whatever. It wasn't city water.
Val
Val