Newly Diagnosed, but highly skeptical of FM

[shmebonn]

Hi everyone. I'm new here I am trying to get all the information I can about Fibromyalgia. I saw a Rheumatologist recently and was diagnosed with this. Until now, I never believed it was real. Having the doctor tell me I have it was like a dismissal, a slap in the face. I felt as if she was just giving me a wastebasket diagnosis and sending me on my way, particularly since I did have a positive ANA.

My symptoms are:

arthritis-like pain throughout my body, worse in cold weather (almost intolerable)

restless legs syndrome

GERD w/esophageal spasm

vertigo

balance problems

chest pain

spells of extreme, painful fatigue

inability to stand or sit for any length of time

pain subsides with certain kinds of movement or exercise

migraine with visual changes

And there's lots more, but I'll keep it short. I got Cytomegalovirus (CMV) three years ago which resulted in mononucleosis infection with enlarged liver and spleen. I never felt really good again. I've had most of these symptoms since I was about 8 years old, but they were then a minor and occasional annoyance - and now a constant, nearly debilitating daily event. I suspect the CMV had something to do with triggering all of this.

I'm 27 years old and no one takes me seriously, so mostly I just try to go through life pretending I am fine, but I am suffering terribly and spend a lot of time just crying because I hurt so much. Try living like that while you're trying to hide it from your husband and two children, trying to keep the "game face" on. Sigh.

Anyhoo, that's me in a nutshell.

[jenpake]

shmebonn -- Trust me, I do believe you. I know others here believe you, too. I'm also newly diagnosed, after many years of symptoms slowly creeping up and clustering together.

I used to joke I had a brain tumor and was going to die when I turned 25.

Sometimes, I still wish that were true -- it would almost be better than living with the constant pain every day. I'm only 22, and I feel cheated in a way that this is what life has in store for me.

But knowing I'm not alone and also knowing what is wrong -- has been wrong for more than half my life -- helps immensely.

I hope the knowledge that you're in a safe community where others understand you will help you, too.

Jenny

[mary b]

i definetly believe you. just a word of advice, all i can really say is sit down with your husband, and let him see the forum, and brochures and even let him speak to your dr. if you have support from home, it is so much easier than keeping that happy go lucky attitude.

i made that mistake for years, and i wasnt diagnosed yet. i only had 20 lab tests that came back inconclusive.

now my family knows and that stress is completly gone. support is suposed to begin at home. if it does it will make things so much easier
_________________
hi my name is mary b, newly diagnosed. with fibromyalgia and lupus, i need help

[Jessie]

I think that disbelief is one big cause of stess for a lot of us. My mother and I both have fibromyalgia. It's been much easier for me, because my friends, family, and even work have been great about it. It wasn't so easy for her. Her boss at work didn't believe her. She went to many doctors, was told she was just depressed. She tried doing light duty work, but was still unable to do it.

She didn't start out depressed, but after battling with her work, insurance company, doctors, and even the people at disability for years--she now is very depressed. She no longer works or goes out except for doctor appointments.

This pain is very real and I hope you are able to confide in your husband at least. He has the ability to help you tremendously! Just let him know about it. Tell him what he can do to help you. Be specific! Men don't seem to know things that we think are obvious sometimes. He probably doesn't realize how hard it is for you or what to do about it. Please give him a chance. I truly think it will be worth it!

[CJ]

I'm so sorry to hear about how debilitating and depressing life has become for you. I'm been there too (it has gotten better for me, though). I wondered if my son would remember me as "the sofa mom."

Have you had any other tests done beside the ANAs? If your ANAs were positive, your doc should have run an autoimmune panel. Is the CMV completely out of your system? It could very well have kicked of or exacerbated any FM you may already have had (you've had these same signs and symptoms since age 8?)

I, too, had a virus (parvo virus) kick off my FM 2.5 years ago, and I have a lot of the same signs/symptoms you do. I think it has been easier for my husband to accept that something is really wrong with me because 3 years ago I weighed 60 pounds less, did 4-5 hours of aerobic exercise a week, lifted weights, and went to nursing school. He saw me moving into our new house and going gung ho painting it, etc.

Then everything came to a crashing halt and I slept so much that all I could do was make a pitiful attempt to keep my husband and son in clean clothes and dishes (forget cooking). He saw me have to give up an incredible opportunity to do graduate work in bioterrorism/engineering counter measures. It was all gone in a flash. Seeing me go from one extreme to another probably helped him to realize something was really wrong with me (I didn't even have a diagnosis for the first year). Even if I had no physical symptoms, the change in mental clarity/cognition would have been frighteninly proof enought that something was very much amiss. He's been really great about it, though--I'm very fortunate in that respect.

Feel free to e-mail me if you wish at siege571@cs.com. I'm a medical researcher who actually enjoys a good medical mystery. I've been researching FM for the last 2 years and I must say (most humbly) that I probably know more about FM and autoimmune diseases (and immunodeficiency disorders) than most docs.

Don't ever be afraid to question a diagnosis or a doctor. There have been several times where I've had to correct (tactfully, of course) a doc's diagnosis or treatment. Kind of scary....

Hang in there--anyone feel free to e-mail me at the above addy..
_________________
CJ
When life hands you a lemon, whip out an acetylene torch and make an armored vehicle.

[swissalps]

Hi There,

It was sad but relieving to read your email. How many people are out there pretending to be ok. I have put on a brave face for 1.5 years and like you when I was alone I just cried all the time. Firstly realise that you are not alone with these symptoms, there must be loads of us around the globe! I won't go into to much detail re my symptoms but when I read your post I couldn't help but think that these disharmonies of your liver and spleen from that illness could be the route of all this. Would you consider seeing a practitioner of traditional chinese medicine? It's what is working for me at present. I have read some articles on fibromyalgia and TCM and they seem to treat the spleen, liver and heart with acupuncture and herbs. TCM seems an ideal solution for this kind of illness, when western lab tests reveal nothing and make us think we are going mad. We are not, we just need the right kind of help!!I hope you get well so you can enjoy your life again. I know I am! I now have those good to be alive moments and am happy again.

[lily64]

I did not believe what I had was FMS and I'm still not sure that it's not some other autoimmune disease that just has not been properly diagnosed. The bottom line for me is that regardless of what it is, there does not appear to be a "cure" for any of them and the reaction from doctors seems to be very prevalent. This past spring I was having a very hard time and I saw a new Dr. as my GP moved out of the area. This woman told me, "Well, you are getting on to 40 now and most of the symptoms you are having are pretty normal for a 40 year old woman..." Needless to say, I had to get out of their before I let her have it. I have yet to meet the "average" 40 yo woman who has the health issues I have and is able to meet each day's challenges with a little "extra sleep", which is what she told me I needed.

I am not sure I have any real words of wisdom for you, except to not give up and continue to get the drs. to do regular testing. I believe I would seek a second opinion of another rheumatologist due to the positive ANA factor, since that is indicative of an autoimmune disease of some kind, but may need further testing than the initial test to get a more accurate diagnosis, according to the research I've read.

[ghchealth]

You should get in touch with the Bowen Institute and get a QribB test done to rule out Lyme disease. If the test is positive there are many natural methods of eliminating the lyme bacteria and returning to good health.

[mch5683]

Hi,
Im new here as well. was diagnosed with fibromyalgia about 2 years ago after my doctor had me undergo extensive testing. I too have a positive ANA but my doctors are fairly sure it's a fibromyalgia diagnosis. All I can say is try to stay positve, exercise, eat right, and find a regimen that works for you. For me, the prescribed medication made me feel like a zombey so I take vitamin supplements and use a lot of heat therapy. I'm always feeling exhausted and suffer with the headaches regularly. The pain comes and goes but when it comes its really rough. Today is a bad day! Family and friends don't understand. Often times I feel like they just think I'm "complaining again". This forum helps me to know I am not alone!

[Joker]

Hi, I am new here too (1st time) I dont' know why you feel your doc. was dismissing you, by telling you you have Fibromyalgia. The symptoms you describe, are Exactly fibromyalgia. Plus, it is thougth by some, that Mono can be a trigger for fibro. What is a pos AnA??
I am sorry you have to pretend to feel ok. I do also. My husband thinks if you aren't gushing blood, you must just be faking it. Most people I know, have cerainly never heard of fibro, so I just say I have arthritis. this they can understand and seem to have some sympathy for. As you read peoples stories, their symptoms etc. you will see for yourself that you Are one of us. Sorry, but welcome to the club. Please stay here and get support from people who can relate. It does help alittle to know you aren't crazy, and you do really have something that is real, and we do too. Nice to meet you