Is This Fibro Stuff For Real?

[anacyde]

I went to a Rheumatologist last March when I finally got fed up with feeling like garbage and my appointments and testing with a neurologist revealed only a mildly positive ANA and three bulging discs in my low spine.  I presented the rheumatologist with my symptoms list, which I put below, and she pressed on a few spots on my body (I had NO clue I hurt that bad in so many spots!) and informed me I had fibromyalgia.  Honestly, I got mad and left the office, irritated at getting a wastebasket diagnosis for real symptoms.  But the more I read, the more I'm starting to believe.  Here are my symptoms, the most pressing of which are at the top.  Please let me know if you can relate.  And yeah, I know, I sound like quite a mess!

Insomnia, particularly in low light months

Dizziness, balance problems

Palpitations

Joint pain or "bone pain" - feels like pain shooting through my bones, and it moves all over my body randomly.

Feeling like my hands are swollen when they're not

Ocular migraine/unexplained blurred vision that usually accompanies severe fatigue and full body pain

Irregular or completely absent periods

Tingling in hands and arms

TMJ  

Interstitial cystitis (dx: 2002)

Frequent kidney stones

Restless-legs syndrome  

Multiple chemical sensitivities  

Esophageal spasm  

Anxiety  

Raynauds

Carpal tunnel syndrome (this went away after my son was born though...)

Anyone else this wrecked?

[anacyde]

Haha, this is almost funny.  I forgot to mention I also have forgetfulness.  Bad.  Often.  It's like I try to do something and my mind just goes pffffft.  But what gets me is the extreme exhaustion, sometimes to the point I feel shaky and weak.

[anacyde]

...and endometriosis.  God how could I forget THAT.

[patsy10]

I have most of what you posted except for the absent periods and memory issues. I have lots of neurologic symptoms. Yes, I had numerous tests done to rule out MS and other things...all normal.  I saw a fibro specialist and had 14 out of 18 tender points. I technically meet the criteria for fibro.  I feel it's a waste-basket diagnosis as well.  Yes the symptoms are real but "something" is causing them.  I won't sit back and accept this diagnosis.  Diseases like Lyme can cause fibro symptoms but it's very difficult to diagnose.  I continue my search but so far to no avail.  I'm tired of seeing doctors who do nothing for me.  Once you get a fibro diagnosis they stop looking.  All they seem to want to do is prescribe antidepressants. Unfortunately, it forced me to go from doctor to doctor.  I personally will not take antidepressants.  Other people are more agreeable.

[PlateletGal]

I don't have fibromyalgia (I have CFS), but I can tell you that many of the people I know with fibromyalgia share many of the same symptoms you described. Dizziness is also common in patients' with fibromyalgia (and CFS for that matter).

[PlateletGal]

P.S. --- As far as treating fibro, I know D-Ribose is a supplement that has been proven in research studies to help most patients' with fibromyalgia and CFS. You guys may want to google it and ask your physician about it.

[patsy10]

Thanks for the info.  I read about the D-Ribose and I am considering it.

[anacyde]

Yes, you sound just like me.  I refuse to take antidepressants.  I've seen what they do to people, and it's not pretty.  I've also studied what they actually do to the brain.  Now for severely depressed people, I'm sure it's a wonderful thing, but I am not anywhere close to depressed.  And contrary to popular belief, I think they make anxiety worse - not better.  But that's my opinion, I choose not to poison my body.  There are risks to everything, so I take risks only when the benefit CLEARLY outweighs those risks (i.e. antibiotics for infection, etc.).

**I'm not knocking what anyone else tries.

I'm glad to know I'm not the only one who feels like I got a wastebasket diagnosis.   I'm not content to take a handful of pills and trade this batch of ill feelings for another.  I stopped pursuing it last March after being told about this, but the symptoms are getting pretty unbearable now.  I'm not myself.  I'm active, energetic, not easily fatigued.  But right now...I'm lethargic and sleepy, and sleep doesn't help.

The odd thing about all of this is that my husband started getting these exact symptoms (minus the female stuff, of course) as well as IBS.  I never understood why he never felt like doing anything over the past six years.  Now I get it.  We have the same symptoms, we hurt on the same days, fatigue on the same days.  All of this started for me shortly after I met my husband.  I got a severe cytomegalovirus infection (it feels like mono) and my liver and spleen got enlarged and everything.  It took me 6 months to feel better (back in 2001) and I never did recover my energy.  Since my husband didn't catch it, our doctor said he probably already had CMV before.  I've heard CMV can be related to this.  I also have to wonder if it's our home.  I mean, what are the odds of two different people from different places both having this - me years after his symptoms developed?  I don't think it's coincidence.

Okay, enough rambling from me.  Just seeking answers ;)

[attheendofmyrope]

Hi, It's real alright. I have 18 of 18 and except for the female problems (I have had a hysterectomy) I have all of your symptoms plus.

I was taking about 12 different meds a day, but have now taken myself off of all of them. I began to feel like I was doing my body more harm than good with all that junk. I think taking all the meds made me feel more depressed and I feel much better mentally than I did when I was on them. I still hurt all the time, but I don't take anything stronger than Tylenol Arthritis and amazingly that seems to help. I usually only take it at night before I go to bed and it also helps me rest a little easier. I would suggest taking a multi-vitamin every day if you can handle it.

[patsy10]

Interesting.....I also had a severe infection back in the early 90's with neurologic symptoms, diarrhea, vomiting, elevated liver enzymes, MS symptoms etc...I was acutely ill for months.  No cause was ever found.  It took me about 5 years to recover but never 100%.  Then it all hit again in 2005 and is still here, minus the infectious symptoms.  It's very interesting that your husband is sick too.  Mine is perfectly healthy so I don't think he has whatever I have.  Is there any chance of lyme?

[PlateletGal]

Interesting about what your physician told you. (CMV) What I learned about CMV, is that it is just a regular virus that is like a cold. From what I understood, the only reason why they screen blood donors for the virus, is because they didn't want to give it to newborn babies and immunocompromised patients'.

[anacyde]

attheendofmyrope: I actually did keep with taking a multivitamin since my kids were born.  I figure, my body got used to that during pregnancy, why rob it of that now?  I think it helps some.  I'm with you in thinking that I'm going to hurt either way, and I'll be better mentally if I avoid excess medications.

patsy10: I've been tested for Lyme, and it was ruled out.  It was the first at the top of my neurologist's list of things to test for though.  My symptoms from the CMV were mainly very very very intense fatigue (I couldn't lift my arms long enough to drive a car, I had trouble making it through a shower and I had to sit down in the tub during it, etc.) and a fever.  I also had joint pains.  I've read that a lot of people have a trauma or illness that preceeds the onset of fibro symptoms.

PlateletGal: Most of the time CMV is just a normal virus like a cold.  Some people though can get a nasty mono-like presentation of it.  Testing the blood for it is rather expensive, so they did that LAST.  First they tested for Epstein-Barr.  I was negative.  I had a good doctor though, and he knew something wasn't right.  Since an acute CMV infection can present with liver or spleen enlargement, he did a CT scan (apparently cheaper than the blood test for CMV) and indeed my liver and spleen were both enlarged.  That was all he needed to go ahead with the blood test for CMV, and it was of course positive.  My liver enzymes were a little screwy and my skin was pale and kinda yellow-ish.

An acute CMV infection like I had isn't common.  Most people won't even get symptoms at all.  Read more here:
http://www.nlm.nih.gov/medlineplus/ency/article/000568.htm

[patsy10]

That nasty illness I had was very similar.  Elevated liver enzymes, fevers, sick, sick, sick. I worked but slept 20 hours a day on  my days off. They tested me for epstein barr, all 3 hepatitis types.  These tests were negative.  They never tested me for CMV.  They said "non-specific" virus caused it.  I wonder if it was CMV...

[anacyde]

Sounds familiar.  Unless they have a real good reason, they usually won't do the CMV test.  I think the doctor I had at the time had seen it's like before, so he knew what he was looking for.  Your elevated liver enzymes would be what makes me wonder the most.

[idesofmarch]

Yeah it sounds like you have fibro.  They are doing some new testing on cadavers brain and something else (sorry brain fog)LOL . It is no longer a wastebasket diognosis. My husband doesn't have it but my next door neighbor got it after we started hanging out alot.  No I don't think that it is contagious but I was told not to give blood because it could possibly be given to the recipient of the blood.  Also get checked for hypothyroid, it seems to go along w/fibro. But the blood tests usually come back normal for fibro people so ask for the expencive blood test to be done. (Name, don't know)  There are many overlapping symptoms and usually the doctor checks for everything that can be tested and if all comes back normal they say it's fibromyalgia.  I have afew different ailments with the same symptoms, and it sucks when they can only treat the symptoms.  You will give in one day to something for sleep or pain, believe me.  I am up to 6 RX now.  I fought it too. Good luck and gather up as much info as you can because you will be your best doctor.

[anacyde]

I found an article on emedicine about fibromyalgia, and I guess there are some blood markers that fibro sufferers share in common.  I wish it was simpler and more definitive, like get a test that gives you a yes or no answer and offers some conclusive proof that this stuff is the real deal.

Don't get me wrong, obviously there is something to it.  We've got symptoms, and these symptoms fit across the board for those of us clumped into the "fibromyalgia" diagnosis.  There's no denying something very real is happening to us.  I guess I wish we had more clear answers as to what.

[patsy10]

Sorry to prove you wrong, but I'm not overweight.  I wear a size 6. Before this hit me suddenly, I was a daily exerciser, healthy eater etc....very fit.  I can't exercise like I used to but I do what I can.  I'm still a healthy eater. I'm still muscular and fit looking.  I think this is one of the reasons doctors look at me and don't think anything is really wrong.

[tamlloyd]

I have been diagnosed with Fibromyalgia since about 1 1/2 years ago. At onset, I was a wreck. Then I started taking Cymbalta and it helped out for awhile. Then all of a sudden, this past November and since, I have struggled with all the symptoms I've had before and more. The CFS is kicking my tail. When first diagnosed, I was a SAHM, now I'm back in the workforce and it's been a year.

My employer has been halfway understanding of my illness. Since informed, they have rearranged my work area but b/c of the days off I have had to request, they started "tripping". However, I've learned about Intermittent FMLA and my doctor has just approved me for 6 hour work days and 1 day off per week. It's up to me if I need to actually work that schedule but since she has written it, my employer can't reject it. And this is my general practice doctor. I'm now searching for a good rheumy b/c the first one I had, I didn't care for too much.

I have just about all of those symptoms you described but I didn't know that the menstrual cycle had anything to do with it. It may explain why my cycle has gone from 7 to 9 days to 2-3 days.

I'm so glad I found this forum. Most of my friends don't understand what I have and it's hard to explain to most.

[PlateletGal]

I'm not sorry to prove you wrong. You obviously have been given the wrong information. I don't have fibromyalgia, but I know 5 women who do.... 3 of them are all R.N.s and definitely not overweight. I have CFS and I'm also very thin.

Get the facts.

[PlateletGal]

How would you know ? As I said, "get the facts". Education is a good thing.

[PlateletGal]

I don't care if you are an MD, CEO or President of the U.S,. You obviously have issues coming into a community where there are real people with real health problems and for some reason, you feel like you have to be judgmental and make asinine statements.

And please, don't try to intimidate me by calling me "darling".

[PlateletGal]

As far as fibro being overdiagnosed, it may be. But the real problem is that there are people with real health issues and physicians' are responsible for their healthcare. If physicians are misdiagnosing these patients', take your issues up with them. I know many patients' here are frustrated with the healthcare they have received, including myself.

And yes, some patients' have depression and anxiety issues that may cause some of their symptoms. Physicians' are also responsibile for ruling out those conditions before any other diagnosis. But fibromyalgia is a real illness and I know that there is a blood test that can diagnose both fibromyalgia & CFS... check out "RED LABS USA".

[PlateletGal]

I was thinking the same thing when I read your post. = )

And I seriously doubt you are a physician. If you are, God help us all.

[PlateletGal]

Not that it is any of your business, but I'm doing a virus check on my computer right now. You have no clue who I am or what I do, so what I stated earlier is true.

You are not a compassionate person and I seriously doubt that you are a physician. I could ask you medical questions, but you would probably use google to get your answers.

Goodbye.

[PlateletGal]

Well I just got back from running a few errands. I see you've still been here.

Your comment is an ignorant comment and I will tell you why. Those nurses I mentioned earlier who have fibromyalgia do not take any medications for their condition. In addition, those people with fibromyalgia who do, have often quit taking them and often make comments about how they wish there was a CURE for their disease. They often comment on how they hate taking painkillers for their condition and how they don't work.

You obviously do not know what a real condition is and I doubt that you even visited Red Labs USA's website. Honestly... if you are a physician, I would report you to the AMA for your inconsiderate comments.

[PlateletGal]

Just as I suspected. Nothing more... and nothing less.

Get help Patricia. You are an angry person.

[PlateletGal]

Just as I suspected. Nothing more... and nothing less.

Get help Patricia. You are an angry person.

[PlateletGal]

Cow ? You are ignorant. I already informed you that I was thin. As I said earlier, "educate yourself".

And as far as your BS about working in the medical field. I've been there and done that and many of my relatives are also in the medical field.

You are way out-of-line.

[PlateletGal]

Biatch ? Is that gangsta talk ? LOL !

[PlateletGal]

I guess this smart physician, which for the record I don't believe she is, hasn't read the part where I said that I didn't have fibro. Not too smart, is she ?

[anacyde]

I'm actually UNDER weight at 5'7" and 118 pounds.  

[anacyde]

I suppose I should have read further before replying to this internet attention-seeker, who is clearly here with more time on their hand than anyone should have, and obviously suffering from self-esteem issues that they need to berate others for to bolster their sense of self.  I think we'd all be best to just take the high road here and ignore the troll.  Let's continue our conversation as if said person had not joined in.

[patsy10]

People who come to web sites to cause trouble or make people angry are called trolls.  My suggestion is that we do not respond to any more negative comments from people who are here to create negativity.

[PlateletGal]

You're right. This person does not want to debate the issue. She is only here because she has issues and especially angry issues. If she were here to debate the issue with fibromyalgia, she would provide research & links. In addition, she would probably volunteer to help so many of the other members' here with their undiagnosed health issues.

This person makes assumptions, tries to intimidate & hurt people and is very rude and ignorant.

I guess that is enough ! Maybe we will see her on the Relationships board ?

[PlateletGal]

Has your physician checked your thryoid levels and/or vitamin B12 levels ?  Palpitations are a symptom of CFS -- possibly fibromyalgia as well. As far as your periods, you should have your hormone levels checked. It is possible that you could have endocrine problems -- many CFS patients' do. Your physician should check your hormone levels and possibly your cortisol levels. Sometimes fibro patients' have some CFS symptoms and vice versa.

[PlateletGal]

They actually have a test to diagnose fibro. I gave you the name of the lab earlier, but you chose to ignore it and instead behave like a ignorant brat.

[PlateletGal]

Mainstream medicine admits that the pain of fibromyalgia is not "all in the head". For years the lack of peripheral abnormalities with this disease led most clinicians and researchers to question fibromyalgia's validity. Now genetic research and neurobiological findings have convinced the medical community to "take these patients' seriously", says Richard E. Harris, PhD, an investigator at the University of Michigan's Chronic Pain and Fatigue Research Center.

source: Taste for Life - March 2007

(I just happened to pick up this magazine today, not knowing about the information about fibro it contained!)

Keep on the research !

[tamlloyd]

You mean you are a doctor? I have never seen such in a so called physician. Doctors are supposed to help people, you seem to be here only to berate those of us who are really sick.

And for your information, we are not drug seekers. We would like for people like you to be looking for a cure so that we won't have to continue to be in such pain and anguish.

And for your further information, this is not a site to boo hoos and whining. It's a place for people with like symptoms to give and get compassion and also to share things that may work.

I have fibromyalgia and I hurt all of the time amongst the other symptoms, but I work 40 hours a week, and have a husband and four very energetic boys ages 3 to 12. I do all I can to keep a balanced life and fibromyalgia makes it hard.

It's sad that you would take the tone you have with us on this site. Sometimes when you do that, you end up experiencing it first hand and regretting your attitude. I'm a kind person and I wouldn't wish fibro or CFS on anyone. Those of us who have it and deal with it are the strongest people I know.

You on the other hand................need a reality check.

[tamlloyd]

Oh.........and I'm not fat.

[PlateletGal]

Well.. in my case, you would lose your license. Of course, I still doubt that you have a license and if you would reveal your true name, I would report you to the AMA.

Physicians' like you give medicine a bad name. You should appreciate these patients' of yours (if you do practice in medicine) because these patients' are YOUR teachers. You just haven't learned the lesson yet. And if they have depression, treat them and see if that helps their condition.

Remember only decades ago, doctors' said the SAME THING about people with MS.

[tamlloyd]

Yes, I do have a history of depression and anxiety and could probably write a book about it.

However, I am NOT FAT and don't have a history of obesity. I am currently 160lbs and 5'6". Before having kids, my weight was 125 and standing.

I wonder how many patients you have diagnosed. My physician could teach you a lot about patient compassion and basic tact.

And I have reported you for abuse.

[tamlloyd]

It's amazing how you say such things............Fibro has recently been recognized as a true chronic condition after years of saying it was only in the minds of those who claimed to have it.

I have been diagnosed by my family doctor and a rheumatologist.

You just need to SHUT UP!!

[PlateletGal]

Terrible these attitudes people like the poster has. Regardless of what MAY cause an illness -- what does it matter ? I know I've NEVER had depression or have ever been diagnosed or treated for depression. I'm almost always happy. And if someone does have depression... why in the world would a physician have discriminating attitudes towards that person ? You know how many physicians' out there who have some serious issues ? I guess we've already met one of them on the boards, but I can tell you from working with them for many years... there are plenty of them out there.

Perhaps one day this poster will learn the lesson. Maybe she will get diagnosed with fibromyalgia or CFS. God works in mysterious ways, doesn't he ?

[PlateletGal]

Thank you for reporting her. She's out-of-line, to say the least.

[PlateletGal]

Poor patients << sigh >>

[PlateletGal]

I guess you failed to read MedHelp's "Terms of Use" when you joined this community.

[PlateletGal]

Myths and Misconceptions about Fibromyalgia:

http://www.nationalpainfoundation.org/MyTreatment/articles/Fibromyalgia_Myths.asp

[PlateletGal]

"your not that stupid are you?"

CORRECTION: You'RE

I thought you were making rounds, Patricia. Oh and btw, you still haven't figured out that I haven't posted any questions, etc. about my health. I do mention my health on occasion, so other people know that I also have health issues and this is why I'm here. I have the opportunity to help others... unlike yourself.

Hasta La Pasta. You can certainly post your phone # if you would like. It is against the rules, but from what I can see... you don't care about the rules here. Go ahead and break them again.

[patsy10]

Why are people still posting to a troll?  This is what troll's want.

[tamlloyd]

Yes, that's all she wants. Let's forget about her and go back to helping and encouraging each other.

TRL

[PlateletGal]

Sounds good to me. This person obviously wasn't interested in debating the issue. She came here and attacked because she has some real issues.

Time to move on.

[PlateletGal]

I am not a cow, as I already told you. Actually, I laugh at you because I'm thin and you haven't a clue as to what you are talking about. Only stupid people would make such assumptions. Since you aren't banned, I will go ahead and inform MedHelp that you are once again causing trouble.

[PlateletGal]

I don't have fibro, you idiot. Did you read anything I wrote?

Goodbye Patricia.... you are a bore !

[PlateletGal]

I'm thin and very attractive. You are a liar and clueless.

Get a life.

[patsy10]

You are as gulity of abuse as she is for responding to the posts.  Why are you doing this??????It's ridiculous!!!!

[PlateletGal]

I am not. I was simply trying to get this person to see reality. Obviously it didn't work and I am ignoring her now. I also reported her to MedHelp.

[iwalmbg]

Ladies..Ladies....Take a breath.Let's all just get along with each other.This is my first post and I have all the same problems as yall(set aside the menstrual because I am male) but would like to know if any of you also shake a little and when your eyes are closed feel like your eyes are shaking(not sure what the real term is).I've had the same problems for about two years and it's getting worse.I have a 2 year old and newborn that I am concerned about providing for.Thanks for your help.

[patsy10]

What you are describing sounds like nystagmus to me.  You could google it for more info and see if it fits.  I'm not sure if that is a fibro symptom though.  I know it's  a neuro symptom.

[patsy10]

Yes, men get fibro.  It's just much less common in men.  The doctor who diagnosed me is a man and has fibro himself.  He's nationally known.  Google Mark Pellegrino, M.D. and see if you can find more info.  He has written several books about it.  The book I have is called Fibromyalgia, Up Close and Personal.

[shemeon]

Hey anacyde, You might want to check out Igenex for lyme and Enterolab for a gluten intolerance test. My symptons are almost identical to yours but I also have keratitis and abdomonel pain and bloating. I had had the regular lyme disease and celiac tests but they were negative but through Igenex and Enterolab they were positive. For the last few months I've been on a gluten free diet and immune boosting foods/supplements for the lyme and have made huge strides.

Good luck!

[SoulFeather]

I am new to this forum. I was diagnosed with Fibro after I kept having bad reactions to medicines that were used to treat pain on my right side of my body due to a rare reaction to ciprofloxin (kidney infection and removal of kidney stones in ureter -6. Also still have stones lodged in both kidneys). I was on cipro for 40 days. I also have DDD, Degenerating Disc Disease in between my C5/C6 cervical vertabrae (Neck). I went two years in horrible pain due to a very bad doctor. I had to ask for referrals to orthopedics and rhuematology because she believed it was "all in my head"  She thought I was drug seeking, and also thought it was part of my Bipolar. I have been bipolar all my life and didn't seek medical help for pain until 2004. When she wrote the referrals she wrote on the referral that I gave her a "convuluted story" and she believed she was treating me appropriately for muscle spasms. See all my test came back negative from the radiologist...BUT the ortho doc ssaw immediatelt that I had DDD. I don't know why the radiologist missed it on the MRI and the general doc. she missed it too! So specialist are definately the way to go. The rhuematologist immediately did a tender point test for fibro and I had 11 points. I am not fat but I did gain 10 pounds from the meds. I have been taking percocet when I need to function at work, and I am on Tramadol, Elavil, and  Robaxin. I think I am going to stop the Elavil. I also had trigger point injection for spastisity in my back and shoulders and it made that a lot worse (Chronic Myofacial Pain). The injections for my cervical disc did not help and now this doc wants me to wait for four months before he does anything else and I just don't understand that at all...he's a pain management doc. I am thinking of trying to get a referral to nuerology...What do you all think?

[Abbey]

When tested for Lyme Disease most physicians only do the standardized testing and MANY times it will come up negative. There are more extensive tests with 3 labs around the country. Unfortunately most insurance companies won't pay for the extensive testing. If you feel you have Lyme Disease, DEMAND the specialized tests.

There was a special about a young girl(16 years old). She was tested for Lyme's only to be told she didn't have it. She was a very active student, loved school, cheerleading, school activities. She had to quit school because she was so ill. The doctor's thought she was too stressed, put her on anti depressent meds, told her to take a vacation. It was while on vacation she met a girl who said her sister had the same symptoms and gave her the name of her sister's doctor.

Her parent's flew her across the country to meet with the doctor and sure enough, she had Lyme's Disease.

[phleb2]

Hi, I am new to this site.I am happy I found it. I have had fibro and cfs for about a year and a half. Very frustrating to say the least. I am in health care and sometimes thats even worse when trying to deal with the dr's. They can be offended if you try to push them for help or are informed about your condition, it upsets there ego's. But we must stay positive. I find that daily yoga helps. If i keep my self flexable My joints and body dont freeze up as much. Yes it is very painful, but exersize  is important. Also I have tested positive, antibodies for the following, ebv,cytomeglio virus as well as herpes 6. I have done a ton of research and am in a great deal of pain all the time. I have most all of the symptoms. The most frustating now are poor sleep and the darn choking. I had accupuncture for a while,it helped a great deal, but ins. co. wont pay anymore. I am on pain meds ,tramadol, but it makes me very nauseous, so I dont take it as much. Also just filed intermintant fmla for work. Thank god, now I  have extra days off when needed. My family are tired of my chronic condition so now i can come here to talk and share. Thankyou everyone.