Have you been diagnosed with Fibro?

[Yeoman Randi]

Ok, so i have osteoarthritis for which i've been seeing both a Rheumo doc and and orthopedic for a number of years now. The arthritis is in almost all of my joints and i've already had one surgery and definitely have more in my future.

Aside from the joint pain i have what sounds like Fibro pain, but only from my pelvis down. The Rheumo doc said it could be fibro but since i don't exhibit pain in my upper torso or arms she isn't really sure. She said there are pressure points which when pressed on, hurt. I don't have any of those pressure point pains.

She put me on Lyrica and i was on it for a while. Although it did help with the pain it did things to my head which i really did not like. So, i weaned myself off of it and now i have the lower body pain again. I'm learning to live with it, although i would prefer no pain at all.

I'm still not convinved i have Fibro (although i am at a loss as to what it could be). The fact that the Lyrica made the pain go away means nothing as Lyrica kind of numbs everything, whether it be fibro or anything else for that matter.

Ok, so my question is: Have you been diagnosed with Fibro? What is your pain like? Do you have it all over your body? Are you on a medication for it? What do you do to help yourself? How did YOUR doctor diagnose you? Anything you can tell me would be appreciated! Thanks in advance.

 

[Pingfah]

The drummer in my band has been diagnosed my Fibromyalgia, he suffers quite badly from it. He is able to live quite normally, but he has terrible seize ups and muscle aches if he over exerts himself.

He can't do anything that involves repetitive actions, like using a computer, he can do it at the time but pays for it the next day.

They've tried him on several different drugs, I know that some of them have made him depressed and unmotivated, and he has complained that one of them simply numbed everything as well. I don't know what drugs they are particularly.

I could pump him for some info though, if you wanted.

 

[Yeoman Randi]

^ That would be a great help, if it isn't too much trouble. From hearing what his symptoms are and from what i've read, i lean towards whatever my problem is, it isn't Fibro. But i havent actually spoken to anyone who has been positively diagnosed with it, so I'd like to hear first hand experience.

 

[Pingfah]

Certainly, I shall see him tomorrow and will get some details.

 

[Yeoman Randi]

Thanks so much. I look forward to hearing from you.

 

[RandyS]

I haven't, but before she died, my mom had it really bad. There were times when she had trouble walking so I let her use my wheelchair. She also tried Lyrica, and like you, had problems with it. It would give her strange dreams and hallucinations when she was asleep.

Hope you get better Randi.

 

[pookha]

for years i was dealing with inflammation from another chronic illness.
along the way i also now have severe osteoarthritis but also fibro.
they diagnosed me with the firbo with the nerve pressure point test and because some of the pain pattern was different.

i tried lyrica and it was awful.
i gained even more weight with it and it made me feel even more tired so i stopped taking it.

there could be so many things causing leg pain..
one of them is myofascial pain syndrome .
while fibro seems to be nervous system realted myofascial is related to the muscles.

http://www.mayoclinic.com/health/myofascial-pain-syndrome/DS01042

 

[Dayton Ward]

My wife has fibro and our doctor prescribed what is known as the "guaifenesin protocol." You can learn more about it (and other topics related to fibro) and see if it's something that might work for you, here:

FibromyalgiaTreatment.com

 

[Yeoman Randi]

I haven't, but before she died, my mom had it really bad. There were times when she had trouble walking so I let her use my wheelchair. She also tried Lyrica, and like you, had problems with it. It would give her strange dreams and hallucinations when she was asleep.

Hope you get better Randi.

Thank you Randy. My condolences on the passing of your mom. {{{HUG}}}

for years i was dealing with inflammation from another chronic illness.
along the way i also now have severe osteoarthritis but also fibro.
they diagnosed me with the firbo with the nerve pressure point test and because some of the pain pattern was different.

i tried lyrica and it was awful.
i gained even more weight with it and it made me feel even more tired so i stopped taking it.

there could be so many things causing leg pain..
one of them is myofascial pain syndrome .
while fibro seems to be nervous system realted myofascial is related to the muscles.

http://www.mayoclinic.com/health/myofascial-pain-syndrome/DS01042

Thank you SO MUCH for that link. I'd never heard of that before and the Rheumo doc never mentioned it to me. Yeah, that Lyrica was a bitch, wasn't it? I'm going to mention this MPS to the doc at my next appt.

My wife has fibro and our doctor prescribed what is known as the "guaifenesin protocol." You can learn more about it (and other topics related to fibro) and see if it's something that might work for you, here:

FibromyalgiaTreatment.com

Thanks so much for that link. I'd never heard of that treatment. I'm going to read up on it. We're still not sure what the heck my lower torso pain is all about. But from the couple of posts from the people that DO or did have fibro, my case isn't nearly as bad (if thats what i have.) Something i can be thankful for.

Thanks you guys. If anyone else has fibro and doesn't mind sharing their experience with me, i would greatly appreciate it.

 

[Trippy]

I might be getting closer to this diagnosis. Up until about 6-8 months ago, I was healthy, worked out, flexible and feeling good. Since, I hurt everywhere, I can't sleep, the pain gets so sharp sometimes I catch my breath, if I put pressure on my shoulders, neck, hips, back (upper and lower) ribs or breast bone I hurt bad. My hips/buttocks feel as though someone was stabbing me 80% of the time. My knees ache constantly and my ankles throb. I had a physical last month and some blood tests, and I go back in a week and a half to see what's next.

I've had physio (didn't work), prescription anti-inflammatories (didn't work) and now take 1-2 extra strength Advils a day just to get by.

Life kinda sucks for me right now

 

[T'Bonz]

I've had fibro for 16 years (and I also have both types of arthritis.) Think "flu aches" but without the respiratory junk (or fever.) Also - it can temporarily affect cognitive abilities (fibrofog), in my case, I have trouble with basic math when it's real bad, annoying as I was always very good in math. The cognitive stuff can worsen when one is very tired.

Also - constant fatigue is a hallmark of fibro along with the muscle aches. Sometimes the need to go take a nap is overwhelming.

One recommendation - get checked for Rheumatoid arthritis. The symptoms from that, in the early stages, sound remarkably like fibro.

I'm not on fibro meds. I was when I first had it, but what I got, even though it was supposed to be non-addictive, turned out to be addictive for me (I went through withdrawal if I forgot two days in a row so I threw them out.)

Best of luck. Some work with it, some can't and everyone adapts somehow, albeit with lots of grumbling and mourning over what has been lost.

 

[Trippy]

My 'fog' probably explains why I've been having more problem spelling when I write on the board I've been typing my notes and using overheads for my students instead.

Right after school, before I go home, I feel like I need a nap...I almost drop at my desk!

I don't know what good a diagnosis will do; I don't think I'd take the meds anyway.

 

[Yeoman Randi]

Trippy, omg. It sounds awful! From what you mentioned and from what i've read, it certainly does sound like Fibro is the diagnosis. It's such a hard thing for them to diagnose since there aren't any blood tests or things like that to help in the diagnosis. I'm so sorry!! It's so true, that if you don't feel good physically, life can just suck! I also tried the prescription anti-inflammatories and they worked briefly but then stopped being effective. Lots of people swear by glucosomine and chondroiton ...i actually have them IN THE HOUSE but never remember to take them. Talk about FOG!

Bonz, you say you've had Fibro for 16 years! OMG! I didn't even know they knew about it that long ago. I don't have that overwhelming exhaustion, which is another reason why I'm not convinced it is what i have. I have been checked for RA a few times. Also Lymes and other diseases. Nothing comes up. In fact, the last time i had the RA bloodwork done and she told me nothing was coming up i started to cry. I just wanted a diagnosis! I figured anything was better than not knowing (and not knowing how to treat it).

Whatever it is i have comes and goes. It's always there but somedays it isn't nearly as bad as other days. But i definitely don't have a case as bad as anyone that's posted has. Again, something to be grateful for.

I hope YOU GUYS get the help you need to improve the quality of your lives. It really is true, health is everything.

{{{hugs}}} to everyone who responded and to anyone else suffering with OA, RA or Fibro. It's no fun.

 

[Pingfah]

I was able to have a brief chat with my friend tonight, he is actually going unmedicated now/

They had him on Lyrica and then Amitriptyline, but the Lyrica numbed everything to the extent that was regularly over exerting himself and not knowing it, and the Amitripyline made him tired and lazy and not really care about it either.

Now he just smokes a lot of pot, but he did that anyway before he had any problems...

 

[T'Bonz]

Bonz, you say you've had Fibro for 16 years! OMG! I didn't even know they knew about it that long ago.

I was lucky. Back then, many doctors thought it was a "fake" disease. Mine didn't. I had never even heard of fibro, but had heard of chronic fatigue syndrome (pretty much I think they're the same thing.)

I don't have that overwhelming exhaustion, which is another reason why I'm not convinced it is what i have.

That comes and goes. Mostly, I operate being somewhat tired. I'm so used to it unless it gets really bad (and I need to go to bed) I don't even notice it unless I think about it.

I have been checked for RA a few times. Also Lymes and other diseases. Nothing comes up. In fact, the last time i had the RA bloodwork done and she told me nothing was coming up i started to cry. I just wanted a diagnosis! I figured anything was better than not knowing (and not knowing how to treat it).

Yeah. It is very, very frustrating, no matter what you end up having, to not have a diagnosis to know what the hell is wrong with you. When they figure it out, it's a relief to know. Then you learn how to deal with whatever you've got and how to work around it the best.

Whatever it is i have comes and goes. It's always there but somedays it isn't nearly as bad as other days. But i definitely don't have a case as bad as anyone that's posted has. Again, something to be grateful for.

Some have fibro worse than others. I know some who can go to work with it (I can't) and others are worse off than I am.

In fact, you can blame fibro for me running this place (or even finding it.) When I stopped working, I started staying up late. DS9 was on at 1 AM. That got me interested in Trek again and I started looking for online people who liked Trek.

So blame fibro!

 

[Capt. Vulcan]

It's been awhile but I attended a seminar about Fibro awhile back and what I remember boiled down to, they don't really know what it is but they need to create a system for diagnosis so as to create a basis for treatment. The are X number of points on the body and depending on how many of them hurt with no reason will tell you if you have fibro.

Different doctors have different rules for how many of the points need to be involved, and each doctor pretty much has their own amount of pressure to apply on the points before a positive pain result in valid. Being that it's a diagnosis that can only really come once you've just ruled out everything else, some doctors tend to over diagnose fibro. The meds they give you will probably make you feel better whether you have it or not, so if a doc wants to take a shortcut they can just say fibro and dump some meds on you. It's real, and it's debilitating, but it's kind of a catchall for unexplained pain so some people don't take it seriously. As I understand it, anti-seizure medications have been found to be effective but the pharma company is not allowed to prescribe it specifically for fibro because, at least at the time, no one wanted to pay for studies. The drug reps were basically, in wink wink fashion, telling us to find excuses and outlining ways to prescribe anti-seizure meds to fibro patients.

 

[Yeoman Randi]

^ Jeez.
I'm glad i went off the Lyrica. It did make me physically feel better but the shit it did to my head was sooooo not worth it.

From everything I've read and from talking to people and the doctors, Fibro is pretty much all over the body. As mine is from the pelvis down no one can really diagnose anything.

All i know is, somedays, just touching my legs hurts. I now sleep with a pillow between them (i sleep on my side) so that they wont touch. It is especially bad at the knees.

Bonz, isn't that funny, how fibro in essence brought you here. They say everything happens for a reason. I'd just like to know who THEY are and kick the shit out of them. Frigging guys think they know everything!

 

[T'Bonz]

Well, bad things happen. Usually one can find good out of the bad or the silver lining of the dark cloud.