Fibromyalgia?

Ok so I apologize in advance because I think this might be long-winded. About two years ago (May 2010), I had really bad joint paint & stiffness, muscle pain & weakness and fatigue for about 2.5-3 months. It got really bad, to the point that moving or getting out of bed was really painful and even picking up a 4 pound laptop felt really heavy. Oh and my mom (who I live with) had similar symptoms, that had started about a month before mine, right after she returned from a trip to Southeast Asia. She never went to a doctor because she's stubborn and kind of stupid and won't even go to a doctor for pneumonia when she knows she has it.  I went to a series of doctors, no one was really sure what it was. One of them wanted me to go to a rheumatologist at the time but I didn't because it seemed like it should be something infectious, given the timing of my mom's symptoms as well. Anyway, eventually one of them decided it was Lyme disease and gave me antibiotics. By this time, though, it was mid to late July and it had pretty much gone away so I didn't take them. Lyme never showed up in my blood, despite more than one blood test for it. There have been some mild pop ups of joint pain since but fairly minor and went away fairly quickly.

Fast forward to 4-5 weeks ago. I started having similar symptoms, although this time it started with extreme muscle soreness. Eventually, the joint pain came back as well as mild flu like symptoms (like what it feels like the day before you get sick, except for weeks straight), dehydration, sore throat and in the last few days, chest pain. The last bit is what finally sent me to a doctor today. The walk in clinic is the same as the one where I went the first time, with the doctor who thinks I have fibromyalgia. She wants me to go to a rheumatologist again and I suppose I will (pending the results of the Lyme blood draw I insisted she take) but I looked it up on Web MD and it honestly looks like a made up thing, in the we don't know what this is or what causes it thing but if we give it a name, people will feel better way. I apologize if I offend anyone with that hunch but it looks sort of suspicious as an actual diagnosis to me.

Anyway, basically I want to know if anyone has any experience with fibromyalgia and its treatment and how they actually diagnose it. Thanks.

Hi...first of all, I'm sorry you're feeling so crummy. You're right, Fibro looks like its a "made up" condition, but I can tell you from personal experience its real. I have Rheumatoid Arthritis (bad enough on its own) to the point that I collect disability. I was diagnosed back in 2005. I have been taking medication and seeing a rheumy for years now. Back about a year and a half ago, I starting feeling worse...even on my meds...muscle pain, weakness, exhaustion. I couldn't even stand to be touched. I spoke to my GP thinking I had a virus or something. She ran some tests and saw my inflammation levels in my blood were about normal for someone with RA so it wasn't my arthritis. She sent a message to my Rheumy and he brought me in. There are actually some "tests" that they do. One of which is the trigger points. I think there are 18 of them....and I had 16 of them. 
As for treatment...http://www.webmd.com/fibromyalgia/fibromyalgia-pain-10/fibromyalgia-creating-treatment-plan

There are some medications to help treat the symptoms...most of which are anti-depressants that work to increase the serotonin to help ease the pain and anxiety that go along with the condition.
Read up on it...there are so many people out there suffering.

Hm. I think that the doctor today was testing the trigger points thing (she poked me in various spots that line up with that chart) and I didn't feel any pain.

Thanks for sharing your experiences, kbeech, I do appreciate the feedback.

I've had Lyme and what you describe sounds exactly like what I had.

It can come and go, in my case it was untreated for 18 years before I found a doctor who was actually able to diagnose and teat what was making me sick - some times I'd have a few months of feeling fine, then suddenly be horribly ill for months on end.

I always had negative tests, because I was given the Western Blot type of test, which only checks for antibodies - in my case, my body wasn't fighting it, so there were no antibodies to be found!

I finally got a different test - forget what it's called,but they actually examine your blood under a microscope and look for the bugs - and it showed I had it.

Just something you might want to look into.

Here's a little more info on it: http://www.canlyme.com/flawedtest.html

Yea, to be honest, I think that it's more likely Lyme. I'll have to try to find a doctor who is willing to do that second test. As much as I like the idea of the NHS and healthcare for all, I'm glad right now to have really good insurance here in the US that allows me to go to multiple doctors without a referral.

And wow, 18 years, I can't imagine dealing with this for that long. Were you able to cure it completely once you got the antibiotics you needed, even after so long?

Yea, to be honest, I think that it's more likely Lyme. I'll have to try to find a doctor who is willing to do that second test. As much as I like the idea of the NHS and healthcare for all, I'm glad right now to have really good insurance here in the US that allows me to go to multiple doctors without a referral.

And wow, 18 years, I can't imagine dealing with this for that long. Were you able to cure it completely once you got the antibiotics you needed, even after so long?

Fingers crossed, I hope it's gone. I still have pretty severe arthritis in my knees/ankles, I'm told it's because they had such bad swelling for many years and the joints are a bit damaged - aside from that, I haven't had any of the symptoms.

Apparently I contacted it at the age of 2, and they didn't give me the usual antibiotics because I was too young for them, or something - so it didn't fully get rid of it at the time.

Do you remember being bitten by a tick at any point? Especially one that left a weird-looking circular sort of rash around the bite mark? The rash doesn't always happen, but it's usually a sign of the infection if it does.

Fingers crossed, I hope it's gone. I still have pretty severe arthritis in my knees/ankles, I'm told it's because they had such bad swelling for many years and the joints are a bit damaged - aside from that, I haven't had any of the symptoms.

Apparently I contacted it at the age of 2, and they didn't give me the usual antibiotics because I was too young for them, or something - so it didn't fully get rid of it at the time.

Do you remember being bitten by a tick at any point? Especially one that left a weird-looking circular sort of rash around the bite mark? The rash doesn't always happen, but it's usually a sign of the infection if it does.

Oh wow, that's crazy, so you had it for most of your childhood? That's awful.

And no, I don't remember a tick bite or rash. I'm not a huge fan of the great outdoors--but my cat is, and she has long hair. I don't typically check myself for that sort of thing since I don't spend much (any) time in the woods or tall grass. It might have been in a place that I don't typically look at (my back or the back of my knee or something).

Aww poor you, I can truly sympathise with the muscle pains, fatigue, etc, as I have an autoimmune connective tissue disease.   

Untreated Lyme disease is really serious.  Systemic Lyme is almost impossible to deal with and needs lots of treatment.   My sister has really severe RA now from systemic lyme (RA runs in our family and the Lyme really kicked it all off), her husband needed all kinds of nuerological treatment for his Lyme and is still dealing with back and knee problems even after 5 years and (really not to scare you) but my friend's grandmother passed away from quick onset dimentia brought on by Lyme disease.  My sister and her husband never got the bulls eye rash, and the ticks that bite are tiny.  So if it is Lyme disease, you most definitely want to get on a treatment plan, though be prepared for many antiboitics in your future!

And no fibromyalgia is not a made up disease, though I can see why it 'looks like one'--  It is a truly painful, disabilitating disorder.  It is an 'invisible ilness'  - and when its flaring, you hate to be touched. (I get the fibro pain alongside my connective tissue disorder.  It is horrible!!)  However, if your trigger points don't cause you to immediately wince and pull away, it probably is something else.

Best thing to do is to work with your doctors and get a firm diagnosis and treatement.  Going to a rheumatologist is a great idea as they are experts in all joint and muscle disorders.  Feel better soon ((hugs))

I've never hated to be touched at all during this. In fact, someone else massaging my hands, etc, has always felt really good.

And wow, all that about Lyme really does scare me (in the good, get your butt in gear about this kind of a way).

That autoimmune disease sounds awful, phatbeetle.

So, update:

The blood test for Lyme was negative so I made an appointment with a rheumatologist. That was this morning. She completely dismissed the idea of Lyme, saying that the doctor I'd seen a year and a half ago was a quack (her exact words--kind of unprofessional if you ask me) and ordered a bunch of blood tests. She suspects fibromyalgia as well and talked about how the treatment is antidepressants. She also gave me a lecture about losing weight and exercising more. Finally, she wrote me a prescription for a "muscle relaxant" that made it sound like it was something I should take while achy or whatever, a little stronger than the ibuprofen I've been using.

So I went to fill the script and it turns out she prescribed me an anti depressant without telling me. It's not that that annoys me, per se, but she should have told me. It is also one of the ones with weigh gain as a side effect and from what I can gather from a friend who was previously on a weight-gain side effect anti depressant, there is nothing you can do to stop gaining or lose weight while on it. It also has some fairly nasty withdrawal symptoms associated with it and it's one of those drugs that is Very Very Bad for fetuses. Now, I'm not planning to have kids probably ever and I'm not currently having sex very often, BF being in England and all, but she doesn't know either of those things. Nor did she warn me, a young woman of child-bearing age, that I really, really should NOT get knocked up while taking it. This really rubs me the wrong way. At one point, she did ask if I had a "sleeping partner" (she wanted to know if I snored) and I answered no, not regularly at least, but that doesn't imply that I'm not at all sexually active, I don't think.

So I don't plan to take this drug. I don't necessarily object to the anti depressant but I definitely object to being prescribed it with no opportunity for discussion or questions or starting with one with less-bad side effects. This is especially true since she gave me a lecture about losing weight and then prescribed me something that was likely to cause weight GAIN and didn't warn me about it.

Am I overreacting? I'm disinclined to go to back to her. She also asserted that Lyme "always" shows up in the blood and if it didn't, then I definitely didn't have it, that you definitely have to have the antibodies if it's there. I've definitely read different opinions on perfectly respectable websites, like WebMD, not just on fringe, conspiracy theory type webpages.  Anybody have any ideas about what I should do next?

Time for a new rhuemy if you ask me!!!   You shouldn't be given a medicine without a discussion of the pros and cons! How very unprofessional of her. 
I hope you're feeling a bit better at least 

Thanks phatbeetle! I'm glad that you agree that she was irresponsible. I'm going to a GP that a good friend recommends as willing to listen and try things, etc, on Monday. I'm hoping she'll be willing to give the antibiotics a shot. I'm really tired of feeling this crappy, it hasn't improved at all and I'm worried about taking as much ibuprofen as I am, but I don't really have a choice.

Yeah, I would definitely see someone else. Good luck, aimlesstraveler. I hope you are able to get some treatment you are comfortable with!

Thanks! I hope so too

Aimless, I don't have any advice, but I admire the way you are doing your homework and sticking up for yourself. I hope you find the answers and get things sorted soon.