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New to community/possible fibromyagia

Sep 05, 2016 10:06 PM

I have not been diagnosed but my go is sending me to a specialist because she has ruled out everything else. I've been going to doctors for several years with neck pain, back pain, tingling hands, widespread pain fatigue and headaches. Sometimes the pain is dull, sometimes stabbing and sometimes burning. I've had a burning headache all day and can't stay awake. I've been diagnosed with disc disease and small spur in my neck (which Nero says would not cause pain), I have severe sleep apnea and am on CPAP. I've had MRI's on my head, all kinds of blood work and electricity tests done on my hands and nothing is wrong with me. There is a large area along my spine in my back that feels like something is gnawing on it, pins & needles or numb-idk. My back burns between my shoulder blades. I now have hand ezsema. Sometimes I feel like I have the flu for days and then I will be better for a few days. I'm very stiff when I get up in the morning or from sitting. Ive gained weight, become somewhat of a recluse, can't handle the heat & have no sex drive at all. I had one Nero tell me I was just depressed but I know that is not true! Does this sound like Fibro? I have an appt with a hormone specialist as well but not sure if I should go. Any advice as to what may be wrong with me?

Sep 05, 2016 10:16 PM

I forgot to add that I can't remember anything (my kids get mad) I forget words and have a hard time concentrating at work.

Sep 05, 2016 10:25 PM

I have fibromyalgia, and I experience burning headaches, memory loss just like you . simple words just escape my mind but they always feel like they're on the tip of my tongue. i get the morning stiffness . and i get intese pain and pulling in my back and shoulders as well as numbness and tingling and pain in my hands and feet. i hardly get any sleep , and i suffer from awful mirgaines. i often feel like i have a really bad cold but odds are its just the fibromyalgia. it sounds like you could have fibromyalgia but also it could be tagged along with something else.

Sep 05, 2016 10:52 PM

Is your pain in your joints or muscles more?

Sep 05, 2016 11:30 PM

I have fibromyalgia since 1989 and developed thyroid problems 2013 or so. With some of my reading you should have your thyroid checked. As well as see a rheumatologist they only diagnosis not treat fibromyalgia.

Sep 05, 2016 11:53 PM

It does sound like fibro or some other connective tissue disorder/disease. Still, I think you should keep your appt with hormone doc. There is wisdom in many counsellors. And if you are not satisfied with ANYdoctor, seek another opinion. I've been sick since around 1990 and have learned the hard way that you have to be the squeaky wheel. Your health and your life depend on it. Oh, one other thing, don't be offended if they suggest an anti depressant. It often helps improve your sleep quality and can make an incredible difference in how well you feel. It might take a while to find out what helps so be patient with the process. Best to you. You are in my prayers.

Sep 06, 2016 6:16 AM

I feel like it's in my joints and muscles. I was diagnosed with IBS 30 years ago, I'm 48. I've been taking Klonopin for anxiety for 10 years, been on synthroid for my thyroid for 5 years. My GP started me on cymbalta for pain a year ago and I've been taking large doses of vitamin D for a long time. I also have what feels like jolts of electricity in my head and body sometimes. Makes me feel crazy. My muscles twitch a lot but it doesn't hurt. If I over do it, I pay for it. My Mom has RA, as did her Mom and Aunt. My 2nd cousin has Fibro & Lupus. Physical therapy makes me hurt worse. I've been to every doctor but rheumatoid so that's my next step.

Sep 06, 2016 6:41 AM

I have never posted on a site. Thank you all for your comments and I will keep my appointment with the hormone specialist teaberry1000. She has done blood work and said I do need some adjustments. She has proposed pellets. This after my gynecologist laughed at me and said my hormones were fine. He really hurt my feelings ๐Ÿ˜ข

Sep 06, 2016 9:48 AM

Its nice to meet u here hunni ๐Ÿค—
Such a wonderfull wealth ๐Ÿค—of knowledge and experience๐Ÿ˜™ with the best๐Ÿ˜™ empathy and friendship.
So glad u have joined us ๐Ÿค—

Sep 06, 2016 11:50 AM

Have you been tested for lupus as well?

Sep 06, 2016 11:52 AM

Yes mam and RA and both negative.

Sep 06, 2016 12:05 PM

I have lupus and my ANA was the only positive test everything else was negative. For 2.5 years they told me that my ANA was a false positive even though I was getting sicker and sicker. You can have negative tests and still have lupus and or RA. You only need 4 of the 11 criteria to have it.

Sep 06, 2016 12:13 PM

Mine have always been negative but I will review the other criteria.

Sep 06, 2016 12:55 PM

I hope that you don't have it, but if you know there's something more wrong don't take no for an answer. I had 2 Rheumies, an ENT, a GP and a pain clinic tell me nothing autoimmune was going on. One day my fingers turned blue in front of my GP with Raynaud's. He finally agreed to send me to an Internist realizing something more serious then he thought was going on. The Internist knew I was sick within 5 mins. Of looking at me and diagnosed me with lupus pretty quickly. He said he saw signs of it in my mouth. He felt swelling everywhere I was told there was none.All my joints have lupus arthritis. Everything I had been told was normal by the other doc's was anything but normal according to my Internist.

Sep 06, 2016 4:29 PM

Oh wow! Thank you for sharing!

Sep 06, 2016 6:38 PM

You're welcome Bamagirl. Are you in that place of trying to get answers?

Sep 06, 2016 7:09 PM

Yes mam. I think my new GP is listening and trying to get me an appointment with a rheumatologist who specializes in Fibro. Just waiting on a call for my appointment. Just trying to reach out and understand what's going on with me. I've had a burning headache off and on for a few days and today I've been in a fog and so very tired! I sleep plenty but I'm always sleepy! I fall asleep in meetings & have even fallen asleep while driving. I just knew the CPAP was going to fix that but it didn't and I can't take amphetamine medication because it makes my anxiety worse. I know my husband is tired of me never feeling well. My pain is normally a 5 or under so I'm not sure if it is Fibro because there are so many on here in such severe pain ๐Ÿ˜ข

Sep 06, 2016 7:27 PM

Sorry to hear that. Do you have a lot of joint pain?

Sep 06, 2016 7:30 PM

My neck, shoulders, back and hips hurt. I also have shooting, stabbing pain all over that only lasts a few seconds but is so random, it doesn't make sense. I also have stiffness when getting up.

Sep 06, 2016 7:32 PM

Not good. Have you been tested for anything other than fibro?

Sep 06, 2016 7:49 PM

Lupus, RA, MRI's on neck to rule out bulges or nerve damage, carpal tunnel. My Mom & her Mom have RA & cousin has Lupus.

Sep 06, 2016 8:49 PM

Keep pushing if you know in your "knower" something more is wrong.

Sep 06, 2016 9:13 PM

I will and thank you so much for talking with me. I won't talk to my family & try to act like everything is ok. I go to work and come home and that's about it. I feel so useless ๐Ÿ˜ž I am so tired and my head hurts and I just want to cry! It's sad that the happiest part of your day is going to bed. My mind feels so confused.

Sep 06, 2016 10:03 PM

Sounds very similar to all the symptoms I've been having. I've gone through tons of tests and procedures the last 4 months to rule out all manner of things (autoimmune disorders are also very prevalent in my family, so that's where we started). I'm waiting to see a neurologist because my MRI was abnormal but not definitive enough to give a diagnosis of something like MS or a related disorder (my aunt has MS). My insurance is making it difficult to find someone in my area, so in the meantime, my doctor started me on neurontin to see if it helps the pain. So far, I haven't noticed any difference but I'm just barely at the minimal dosage.

Sep 06, 2016 10:42 PM

You're very welcome Bamagirl. Sorry you're going through it too Teasaidh. Docs are so hesitant to diagnose lest they be wrong. Don't give up. My favourite place is bed too. ๐Ÿ’œ

Sep 06, 2016 11:03 PM

I went through falling asleep while driving trying to keep working. I understand your frustrations. I hope you get some answers. Prayers

Sep 07, 2016 9:10 AM

Prayers for you all!

Sep 07, 2016 11:18 AM

And for you.

Sep 07, 2016 3:23 PM

Bamagirl, your story sounds exactly like mine. Pain in all of the same areas just as you explained it for years, they did all the same tests you have listed and nothing just like you MRI tests, blood tests, nerve tests and so on. I finally got extremely cold and just didn't feel right. My husband took me to the ER and when I got there I was told that I had a fever of 104. Anyway they couldn't find anything wrong with me, gave me morphine and admitted me cause of my BP being really high as well. Finally a rheumatologist came to see me and I was diagnosed with fibromyalgia.

Sep 07, 2016 8:16 PM

104 - wow! Sounds like I really need to see that rheumatologist. I'm waiting on an appointment now. The others I've seen had no answers.

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