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Not diagnosed yet - FRUSTRATED
6 Replies
tinklover - May 13

I am new to this forum and am looking for support. I would have to say that my symptoms really started about 1 year ago. I was having a lot of "tingling" in my arms & legs, suffering from headaches, felt "foggy" like I had stepped out of my body (sounds crazy - but true). I truely felt like something was disconnecting. I was tested for possible seizures and it was negative - thank God. The Neuro also did an MRI and saw that I had (2) small lesions. They ruled out MS because the location of the lesions. Said they appeared to be more "typical lesions" of a Migraine Sufferer. I again was thankful for the negative diagnosis.

I went along dealing with these "disconnect feelings", headaches and sometimes "ice pick" sensations now starting in my chest. I have had Mitral Valve Prolapse for about 3 years now, but these sharp pains were not cardiac related. I began feeling extremely achy and only felt relief from hot showers and/or a heating pad. I also started to notice that my sleep was interrupted, which led to extreme fatigue. Then I experienced panic attacks/anxiety for the 1st time in my life. I honestly thought I was dying.

My Dr is so sick of seeing me! She referred my to a shrink. He gave me some Zanax to take as needed, which has helped my anxiety & attacks. BUT.... I STILL FEEL ALL OF THESE THINGS! My Dr said that she believes I'm headed towards Fibro, but won;t give me a diagnosis. I have been on this site and have soooo many of the symptoms.

Sweats, weight gain, headaches, I tested 14 out 17 trigger points, shortness of breath. earaches and ear ringing, fatigue, huge menstrual issues, bloating, confusion, sensitive to noise, panic attacks, can cry easily, mood swings, mitral valve prolapse, fatty tumors and bruise easy... all this and I'm only going to be 38.

Am I going crazy? Do I have Fibro? Or can this be something else?


Fantod - May 13

A diagnosis of Fibromyalgia (FMS)could certainly be a real possibility. Your experience is not unusual. You need to see a rheumotologist for a firm diagnosis. Gather up copies of your medical records and any recent test results to save time and money. There are other things that can mimic FMS like thyroid problems. Make sure that the rhuemy tests you for a vitamin D deficiency (bloodwork) as this is very common in folks with FMS. You may also want to consider being tested for gluten sensitivity. The most accurate result is obtained using a stool sample. Both of these problems will cause widespread pain.

Go to the National Fibromyalgia Association website to see a list of fibro-friendly doctors in your area. There are still plenty of doctors out there that don't think exists. It is recognised by the Centers for Disease Control and the National Arthitis Foundation. Your doctor may be one of the many unenlightened or just doesn't want to be bothered treating it.

If you do turn out to have FMS, I would certainly take her and the shrink to task. There is no excuse for her lack of care. If she is taking that position with you, she is absolutely doing it to someone else. And, the shrink should know better too. If nothing else, this is your opportunity to educate both of them.

Good luck and let us know the outcome. Take care.


tinklover - May 13

Thanks for the info. I have been tested on Vitamin D and it was low - only 22. I have been taking 2000 IU daily. I also tested negative on gluten and celiac (spelling)?

I guess I'm nervous because I should feel great. I'm young and shouldn't feel like I'm 80. Some days I really feel like someone has a voodoo doll. And I often worry if its something scary. I have a follow up appt in July and I think I'll push for her to send me to a Rhuemitologist.

I've folloed all her other suggestions, but the symptoms don't go away.

Thank you so much!


Myriam - May 13

Hello Tinklover-
I have been diagnosed only for about 3 weeks now, but I have been suffering for 7 years. I have been tested for everything you mentionned and more (got a gastroscopy and 2-yes 2- colonoscopy) becaus eof severe IBS which was thought to be COLITIS, CELIAC and CRHON's- which was all negative. You know, my doctor took a while before saying YES U HAVE FIBRO- mainly because it is hard to put your finger on, but when LUPUS detection test came back begative, she confirmed it. But even if she wouldn't have, I KNEW what I was feeling was fibro and only that mattered. There is no diagnostic test, many say it is an exclusion diagnosis, which mean you rule out everything else-which you did. I feel like i'm 80 often, but I am 27- so I am with you!
Like Fantod said, make sure evrything else is out and then you will know. I have low thyroid, but it is controled, I have low vit D now taking supplement- but still feels the same.
Now for the shrink- it may be of help-but not for the reason your Doc sent you to him. You may need him/her to deal with the chronic pain and limitation of Fibro and not because you are crazy or hypocondriac.
You know, what matters in the end, is you and how you feel. You need a doctor that understands you, and from soemone who used to work as a medical secretary, she CAN NOT refuse to refer you to a specialist and/or give you copies of your file.

Take care, See ya!


Fantod - May 13

tinklover - I would still go to the National Fibromyalgia Association website and look for fibro-friendly rheumotlogists in your area. That way, you can suggest a name/names to her. There are just as many rheumys as there are primary care doctors that have a bad attitude about Fibromyalgia. Just because she does a referral doesn't mean you'll see someone that recognises FMS when they see it. You must be very proactive about your medical care in a situation like this. Good luck.


tinklover - May 13

Fantod & Myriam,

Thank you so much for your support. I will continue educating myself and look to the other websites mentioned. I had one last question... do either of you have trouble taking deep breaths? Like your lungs are restricted from expanding?


Fantod - May 13

Yes, shallow breathing is very common among people with Fibromyalgia (FMS). It is thought that this may contribute to "fibro-fog" as the brain is probably not getting enough oxygen. I try to watch that expecially when I am starting to get anxious. Several deep breaths help - in through the nose and out through the mouth. You want to feel your stomach move so you are really getting a deep breath. Take care.



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