just diagnosed

[Chreey]

Hi im a 29 yr old mother of 4. I just got diagnosed with fibromyalgia today. Im not sure on the diagnosis yet the symptoms seem to fit. I have bad spasms where i can see the nerves under my skin pop. And my legs and arms will jerk. I also have pain in my legs and sometimes it burns and my legs want to colapse from under me or my feet will hurt and feel like pins and needles. I also get migrains and dizzy spells and sometimes have memory problems or almost like black out. i will be involved in a conversation but then miss bits and pieces of it. I also have a hard time with my lower and middle of my back hurting. And it sometimes hurt to be touched in certain places like to be hugged or when my husband plays and tries to pick me up. The only reason that im kinda questioning the diagnosis is cause what ive read states that it is having a low threshold for pain. And i have been through some painful things and always thought that i had a pretty high tolerance to pain. But the neuro gave me savella to try and im not sure if i want to since im a nursing mom and its not recomended for nursing moms. Anyone know of a medication used to treat this condition that is? He also gave me a pamplet for an attorney to sign up for social security. Anyone here win social security with only a fibromyalgia diagnosis? Thanks for help. chreey

[Chreey]

Also forgot to add the fatigue and the muscle cramps. Doc thougt i had ms since my half brother does and the symptoms fit there as well. But no signs of it on any tests had ct scan,evoked potential tests,mri,and emg all were normal. Also had eeg done since my first one in 2009 was abnormal but it turned out normal this time.

[melmel67]

Hello. I am sorry to hear that you are not well and I too am not well and our symptoms are somewhat alike. I too was diagnosed with fibromyalgia by a neurologist but the bad thing is he never listened to me when I would talk to him. He just said it was not anything bad because my previous mri came back normal. It is frustrating because for me each day seems to get worse. I am seeing a neurotologist in Texas but unfortunately whatever I have does not seem to budge. I also believe I had come down with mono because that is when these symptoms first started. Hope you get better soon I know how frustrating this can get and all I can do is pray. Take care & god bless!

[Family2011]

I was just diagnosed with Fibromyalgia and I have similar symptoms, yet they do not think my muscle spasms and jerking are caused from Fribromyalgia. I am loosing my memory, parts of my face, limbs go numb, back pain, abdominal pain, etc...Some days I am unable to walk without help. I have considered disabiltiy, but am trying to hold down my job as best as I can as I am only 28 years old. I wish you the best of luck. All of my test results have come back normal also. I am trying to get a referral to St. Louis. Will let you all know what they say.

[melmel67]

I wish you the best at at the doctor in St. Louis. Hope this gets better for you, but know that you are not alone I too have the same symptoms. We are too young for this to be happening to. Proverbs 3:5- Trust in the LORD with all your heart, lean not on your own understanding, but in all your ways acknowledge him, and he will make your paths straight.

[Family2011]

Thank you. It helps seeing that I am not alone, but I wish we had answers. Good luck to you in Texas.

[Chreey]

Talked to neuro today since he was going to put me on savella but i read you cant take it breastfeeding and he told me no and that theres nothing i can take so only thing i can do is use heat and ice until i go back in 4wks and then discuss point injections.

[melmel67]

I hope you get better and that the pain isn't unbearable for you especially since you have little ones. I got a call back from my neurotologist yesterday and he had the nerve to tell me that I had to go through this before I could get better. I don't think I will be seeing that doc again. And I am praying the new doc that I see next week will have something for me. best of luck and my prayers are with both family 2011 & chreey.  Take care & god bless. Keep me updated.

[Family2011]

Are your symptoms sporatic? Today I am walking perfectly normal, but earlier in the week I needed assistance. Rest seems to be the best treatment for me, do you all do anything to help your spasms, etc...

[Chreey]

my symptoms lately have been consistent. Last two days hurt so bad didn't want to get out of bed going to look into those memory foam matresses see if it helps. But yeah there usually sporatic. Somedays i feel fine maybe a little tired and then other days all heck brakes loose. The spasms come and go i can go a day or two with nothing and then have maybe 1 or 2 and then some days my arms legs buttocks everywhere will just act up. And i have no idea how to help them. The only thing i do is use a heating pad or the roll on stuff like icy hot or aspercreme.

[Family2011]

I forgot to mention that my dr. order physical therapy for fibromyalgia, but we have focused on rebuilding stregnth in my legs and it has helped a lot. I now know how to do some stretches when my body hurts very bad. Maybe you two should ask for the same.

[melmel67]

Thanks will ask about pt from the doc that i see this week. Hope you feel well soon. God bless.

[Family2011]

How did the dr. appt go?

[Chreey]

well went back to dr today and got my first injection hopefully it starts helping my back and hips. Since as of late these are my worst trouble spots. In a month or two when my dd is done breastfeeding i guess i will try the savella.

[Family2011]

I hope they help. Congratulations on the little one. I am doing Yoga and Pilates in physical therapy. Maybe that can help you relieve some of the pain. I also have a masager that I love. It is a homedics massager and it looks like E.T. It is heavy but it is wonderful. It has taken my pain level from a 7 to a 4. Good luck with the injections.

[melmel67]

Hello sorry it took me so long to write back. My appointment in Houston was well okay. I got a nerve test done where they put needles into your muscle and check your nerves by I guess slightly letting electrical shocks go into them. Idk but it was a little painful. It came back normal. I have been waiting a month to get the mris done that the doc prescribed because of insurance authorization. This wednesday I get them both done one of head and one of spine and god willing I will have some answers. I now have feelings of shocks going through out my whole body :( I think I over did my body last week! I pray you guys get better and glad yoga, pilates and the messager are working for you. Take care & god bless and I am happy that I am not alone in this horrible thing either but I pray that we get some answers and relief!!

[Family2011]

Yes ma'am I am praying for you all. Here are a couple of websites that I have found that are on Fibromyalgia and associated diseases. I have Myofacial pain syndrome along with Fibromyalgia, I looked it up and that explains why my limbs go numb. No one explained to me that it was a symptom. They are not treating me for it either. I don't know why. My appt. is next week in St. Louis so keep you posted.

http://chronicfatigue.about.com/od/whatisfibromyalgia/a/fibrosymptoms.htm

http://www.fibromyalgia-symptoms.org/

[melmel67]

Good luck at your appointment next week I will keep you in my prayers! Thanks for the info I will look it up.

[JDS2805]

Sorry to hear about the fibro diagnosis. I was diagnosed about a year ago and had a hard time because a few doctors I saw brushed me off because a male getting fibro isn't all that common- luckily my family doctor disagreed. As for getting social security- regardless it's going to be a pain- you need to provide doctor verification and proof that you are limited because of the fibro- all because there have been those in the past who cheated the system. I was rejected because statistically, it's uncommon for a 30 y/o male to be diagnosed with fibro. I was diagnosed after a random heart infection which I thought was just taking a little longer to get over. My advice- be persistent! All the best to you..

[melmel67]

Hello. How r u all doing? An update on me my mri came back normal only showing sinus infection. Doesn't make sense. My symptoms r getting worse. I tried Lyrica last night but got woken up with rapid heart beat. Idk if I should continue to take it. Now I'm feeling pain in the butt literally and legs and feet. Hope u guys have some improvement. Take care & god bless. Wondering if u all know of good holistic docs in Texas or west coast. Thanks.

[Family2011]

Hey guys. I HAVE A DIAGNOSIS!!!! I went to Dr. Landua at Barnes-Jewish Hospital in Saint Louis. He says I have orthostatic intolerance and  somataform disorder with anxiety. Prior to this I was diagnosed with Fibromyalgia, endometriosis, Irritable Bowel Syndrome, GERD, Reflux esophogitis, and acid reflux. Orthostatic intolerance is a form of dysautonomia and it explains a lot of our symptoms. The somatoform disorder is actually a psychiatric disorder. The way he explained it to me that the pain and symptoms were real. My body is sensitive to the normal functions of the body. All types of stress aggravates it including physical, emotional, and psychological. I think all of the dx's above explain my symptoms without the somatoform disorder, but I trust this DR. and will go to a psychiatrist and try anxiety medications with maybe behavior therapy to see if I can handle stress better. I figure it does not hurt to try. I pray for you two often and hope you both will find the answers you are looking for. Please, keep me posted. You two have helped me significantly, just by knowing that I was not alone. Take care. Oh, melmel heart palpitations is a symptom of fibromyalgia. The pain in the butt, legs, and feet can be caused by your siatic nerve being compressed by a muscle. Physical Therapy had to shock mine inorder to get it to stop hurting.

[melmel67]

So happy for you that you got a diagnosis! Perserverence pays off. It makes sense that stress and anxiety has a lot to do with our symptoms as I too am under a huge amount of stress and I know it's not the cause but it does not make it any better. I hope that the doc (psychiatrist) will help you manage your stress/anxiety better. I pray each day that the lord will heal all of our symptoms and that we could start living normal lives again. Take care and it is comforting to know that you are not alone and that someone else is going through the same thing you are. Take care & god bless you.

[Family2011]

Thanks.

[ewford]

This is Lyme disease straight up, every symptom down to Endometriosis.  That Somofotans diag is a BS diag.  Think about this.  All doctors base their conclusions on test results, right?  Lymes disease creates inflamation throughout your body, This chronic intracellular bacterial infection WILL NOT show up on standard tests.  You need to find a Lyme doc that will take blood, centrifuge it and send it off to IGENEX labs where they will test for Borrelia bacteria (a pleomorphic bacteria) and coinfections of Babesia, Bartonnella, Brucella, and infectious Mycoplasmas.  You don't have to get a "bullseye rash" to have Lyme.  They are finding the bacteria in Mosquitoes, fleas, biting flies and insects AND it can be passed sexually.  It is the fastest vector borne disease in the world today.

Lastly, I want you to consider this.  ALL autoimmune illnesses have no known etiology, meaning doctors don't know what causes it.  Lymes researchers took cadaver brain and tissue samples of MS, Lupus, Fibro, Hashimotos, Sjorgrens, ALS, Dementia Alzheimers  and guess what.   They found the Lyme Borrelia Burgdorferi bacteria.  Please dont accept your diag.  You will spend 50 yrs taking pain meds that will not cure this infection.

[Family2011]

Thanks. I love this website. I will talk to my md on Tuesday, but with the Somotaform dx I am afraid they will not take me seriously. I will print this off for my md. That is crazy. I match a lot of the symptoms for sure.