Diagnosing fibro?

[TigerLily17]

How is fibro diagnosed? I have been told by a few doctors in the past that I might have fibro but was never really diagnosed or sent to see anyone. I was also told by many people that I talked to that this was a diagnosis that was made when nothing else fit. Is this true?

I had an appt. with my kidney doc yesterday and he's sending me to a rheumatologistthat he says is very good and a cardiologist for a consistently high HR and BP. It was 140/105 with a HR of 115 when I went in. I also have an ultrasound of my kidneys scheduled for today and a lot of blood work coming up. I will see him in 4 weeks for the results.

A bit of a history: I'm 18 and I have suffered from joint pain since I was 10. It started in my knees and about 4 years ago started spreading, within about 2 years it was in almost every joint and last year affected my jaw (my jaw is not a huge problem just some occasional aches, rarely is it really bad). I am in severe pain daily with little to no relief and also have muscle spasms mostly in my chest and back. I have been on a range of diff. meds on the low end of the narcotics scale and unfortunately I probably won't get something stronger until I am dignosed with something.

Right now my back is worse than it's ever been and I don't see it going away anytime soon. I'm also not sleeping more than a few hours a night and wake up a lot due to the pain.

Any info will be greatly appreciated
Lily

[TigerLily17]

Yea I know what you mean. I'm on another forum called pain management and I'll read peoples posts who are so much worse than me and wonder how they manage to keep fighting when I'm already having trouble doing that. I don't know how anyone does it but it seems we all manage somehow.

I've changed my diet too and do notice that it's not as bad as it could be when I eat healthier. I also try to do yoga when I can sometimes it works a little but not much. I also try to keep walking but anymore than this and I won't be able to do anything for awhile. Right now I'm not taking any meds as nothing I have works. I've been on aleve, ibuprofen, percocet, darvocet, hydrocodone, neurontin, vicodin and tramadol. The tramadol still works to a point but doesn't touch my back and gives me such bad headaches and dizziness that I can't function. Oh I do take amitriptyline to help me sleep at night but its also not working.

If I do have fibro then it is most definantly progressive. I've been tested for lyme and lupus both were negative, though I want to get tested for lupus again as I have many of the symptoms and it does run in the family so maybe the test was wrong though I'm not even sure if it can be. I'm also trying to get retested for Fabry, a genetic disorder that also runs in the family. The rheumatologist I saw a couple years ago told me I did not have RA based on how my joints still look good though he also tried to tell me my pain was in my head and to see a psychologist.

I have an appt. with the cardiologist coming up on the 29th and still need to schedule one with the new rheumatologist. I do truly hope what you are trying works for you and you get better, but from the way it sounds thats rare.

Wishing you well
Lily

[fibrohurts]

I hate that other people have to feel this way too!! I just know how bad I feel and how miserable I am most of the time and it makes me so sad that there are so many others that have to go thru this all the time!!!

I have gone thru an ordeal with meds and doctors--at first trying to figure out what I had then trying to find any kind of treatment for it, I tried to exercise and I changed my diet for a while.. I tried the no medicine route and then it just got too bad and none of the stupid things worked! LOL. It actually aggravates me when I read or am told how exercise is gonna help. It just makes me hurt worse and it is hard for me to do in the first place

Anyway, the pain meds I started with were Tramadol and Lyrica. That is what they want to start you on.I went up the scale with the strength of pain meds over time. I still take Lyrica because it does help a little with the pain around my tender points.

I go to a pain doc now and I am on Percocet, Opana ER (extended release opoid), Lyrica,Flexeril for muscle spasms, bloodpressure meds, Prilosec for major acid reflux, Zoloft.  ( Zoloft--my nerves are shot at this point, i also have a house full of kids- I tried Cymbalta and it did not help plus made my bloodpressure higher)

I have a very high tolerance to all types of meds so I have to take higher doses to get anything out of them.

I have just started a bunch of herbs/vitamins/minerals. I am hoping it will help with this terrible fatigue I have....

I have had severe syptoms of FM for 3 years but I have had more tolerable symptoms for years. "They" say that FM isn't progressive but I dont believe that. I think I get worse. Most people always have FM once it hits them. There are a few people who go into remission just out of the blue.

You are sooo young. I hope you are able to find a way to get better. Get the tests to see if its something else like Lyme disease, Rheumatoid arthritis, Lupus, etc.. It wouldn't actually be good to have one of those but at least there are treatments for them that really help.

Good luck and feel better!!

[TigerLily17]

Hi
Wow I've never met anyone who had symptoms that started like mine. I'm really sorry though I know how the pain affects me and hate that other people feel like me. Are there any meds that are or have worked for your pain? Is fibro something that you have for your whole life or does it go away? Is there anything I can do to help with the pain? How long have you had this?

Yea mine wasn't really all that bad until about 4-5 years ago and is getting worse all the time. I don't know where I'll be a few years from now but I'm not looking forward to it.

Thanks
Lily

[fibrohurts]

It sounds like FM. Of course, you have to get the tender point check to be sure and you have to have all the blood tests to rule out the other things that have similar symptoms but it does sound like FM

In fact, when i read your post, I was like, Gah, that sounds like how mine started... I had pain in my knees that started in highschool. It could get pretty bad and we just thought it was arthritis but nobody ever did anything to help. I just lived with it.. It was tolerable then though.

As time went on it spread to all my joints then finally other pain and the pain has reached a severe and very untolerable point. I also have a high heart rate and bloodpressure. I take meds for that.

I have noticed a few other people mentioning a high heart rate and am now wondering if its caused by whatever it is that causes FM...

[TigerLily17]

Sorry I forgot to mention that a couple years back a doc told me I have a lot of the tender points associated with fibro. I don't remember this but my mom does, though she doesn't remember how many.