just diagnosed

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 (sciatic) 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 (inflammation) 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.

[ewford]

  You need to, in my opinion, find the CDC diagnosing criteria for Lymes, which states "Lyme should never be diagnosed on test results alone, but clinical diagnosis as well"  Since the CDC and the IDSA state that the test don't pick up a large number of POS results, they need to read that literature.  Too many physicians don't realize that and it's either black or white. Pos or Neg only by test result.The Lyme tests look for antibodies, not the actual fragmented DNA particles or the actual bacteria in muscle tissues or other fluids.  it's why so many people are being missdiagnosed .  Dr s are either uneducated or trying to have you fit THEIR mold.  You know there was a day you once felt fine, and now you have never been the same since.
  The majority of Lyme Dr's that treat this KNOW this exists, they believe the CDC and the IDSA is possibly holding something back and they also know that there has been an explosion of AI diseases in the last 20 yrs.  Reg doctors know next to nothing about infectious mycoplasmas and their links to chronic illness.  For more information on Mycoplasmas look up www.immed.org and go to the chronic illness/autoimmune  section.

[melmel67]

So what kind've of doctor should I ask for the lymes test from? I have an apointment to see a rheumatologist on the 12 August. My primary physician already looks at me like I am crazy. At this point I really don't care because I know something is wrong with my body. Thanks for the info. BTW just curious do you work in the medical field? Or you just have  lot of knowledge about LYmes and other diseases? Thanks again.

[ewford]

  I spent 14 months being missdiagnosed and KNOWING something was wrong.  I'm sure you know the feeling.  Dr after Dr tells you  "it's in your head, stop looking for a problem"  but you KNOW he's wrong.  Your Rheumatologist is not going to be of any help.  Rheumatologists and Infectious disease Dr's are the worst at looking "outside the box" and believe they know everything.  Like I said, doctors go by test results.  If it says pos, they treat.  If it says neg, you cant possibly have that illness.  
  BUT, what if the test they use is flawed and they don't understand how to interpret the results?  AND, what if the CDC narrowed the test criteria so much, you virtually will never test positive?  That is what is happening with Lymes disease.  The bacteria literally "hides itself" or "cloaks itself" from the immune system.  it also dissables the immune system to the point that your body just gives up trying to produce antibodies.  And especially with Lymes, the infection usually comes with several co-infections that exacerbate the illness, creating all over body symptoms and inflamation (inflammation) that really does not tilt any test titres.

  I go to so many medhelp pages and diff communities and the symptoms are ALL THE SAME.  Many that have PM'ed me for more info have gone on to get proper test info and are shocked to see that the Lupus or Fibro or the MS or the ALS or the Hashimotos are in fact LYMES and coinfections.  They have been told for years that they had this one particular disease (whatever they had been diaged with) and then SUDDENLY they had "other" issues.  When in fact they had ONE issue, a bacteria that standard doctors are not familiar with, either Infectious Mycoplasmas or Borrelia bacteria.

you need to contact ILADS  (www.ilads.org) and ask them to provide names of pysicians in your area that know this chronic intracellular bacterial infection exists.  Some of these doctors actually HAVE lyme themselves, so they KNOW the symptoms and will not look at you like you are crazy at all.

  When you spend 14 months knowing you are ill and the docs look at you like you are nuts, you start to figure out that THEY don't know everything and if they don't have pos results, they label you as a hypochondriac.  I used to think that way myself until I got ill.  Now I realize it's that the doctors are more intersted in shoving you out the door and collecting the next payment than actually helping you get better.  I vowed that after I found out what is wrong I would spend my free time helping others get better and "finding the light"  I just hope I have helped some here.

[iambus]

It's not advisable to diagnose people here on the form.  Lyme, Lupus, Fibro, MS and several other diseases are all mimics of each other and have a lot of the same, common symptoms.  Fibro is a diagnosis of exclusion so most drs usually test for lyme, lupus, etc. before making a diagnosis of fibro (and same with MS).  Could some of the people here have lyme? possibly but most have probably already been tested for lyme, therefore ruling it out as a possibility.  

[ewford]

Not to argue, but you are mistaken on the lymes test part.  The Lymes tests are terribly flawed.  Missing up to 80+% of actual positives.  And if you read the above statement of how it evades your immune system by "cloaking" itself, AND effectivly shutting it down, you suffer all the symptoms of an AI disease.  Where you might come here and pat each other on the back for support, I am giving you information that is vital for a proper diagnosis.  If you only knew how many have come to the Lyme page after being missdiagnosed for YEARS as having Lupus, Fibro (a spurrious diag to say the least), parkinsons, MS, ALS, Hashi's and Sjorgrens.  They are ANGRY that had they had the proper information, they could have been diagnosed earlier and avoided a protracted treatment.

There is mounting evidence that ALL atypical and Some typical AI illnesses are IN FACT caused by BORELLIA, not "you own body attacking itself".  You go ahead and keep taking your pain meds for the rest of your life and probably never get better.  I'll put my $ on a bacteria that is intracellular that is causing these missdiagnosis.  

  I had THREE Lyme tests from Labcorp and was told I did not have it.  I researched and found out that the CDC uses a German (as opposed to an American strain)  Lyme sample as the Labcorp test sample.  That German Lyme is almost nonexistant here, so the possibility of it being pos is next to 0%-12%.  That leaves 88% that get diaged with either any number of the AI illnesses, Fibro OR diaged as Somatoform or a Psyche case.  

  I just spoke to and gave info to a woman that has all the classic MS/Fibro/Lupus/Hashi symptoms and has had 12 diff Lymes tests.  ALL OF THEM NEGATIVE.  Labcorp and Quest. Shes 47.  After listening to me she had proper Immu florescent staining tests for Borrelia and coinfections.  Guess what?  She was positive for Borrelia , Babesia, Bartonella and Mycoplasmas.

  You might espouse the fact I am here to help and "diagnose".  I am giving them a direction that is not being discussed anywhere, and needs discussion and accurate information.

[ewford]

Oh, and by the way.  Their doctors are not doing a very good job of diagnosing them period.  This bacteria exists, it has been studied and it is dangerous.  The medical world always takes time to play catch up.  Or as I see it, they let it go until enough people get angry about it.  IAMBUS, get an IGENEX Lyme test for Borrelia and coinfections, you might thank me.  Or at least do some research on your own instead of accepting you probably incorrect diagnosis.  Wish you well!

[melmel67]

How have you all been. I have been all over the place still trying to find answers. I got better for about a week and unfortunately went back to having the tremors all over and now my eyes have been very dry and hurting and now I've been seeing blurry and wavy lines as I read. I am a little frightened because now it's my vision that it's affecting! i got a lymes test done on monday so I am waiting for those results. Lets see what those say! I am already at my last point in direction. I got an mri of the spine done today and that's it for the mri's because the one of the brain came back normal. I saw a retina specialist about the problems with my eyes and he basically said that everything looks normal in my eye. how can a doctor stand there and tell me that my eyes are normal if i am seeing wavy lines! This is crazy! I will continue to fight because I have children and they need me but this is getting frustrating. Hopefully you all are doing much better than I am. God bless!

[ewford]

Do not be surprised if the Western Blot Lymes test through Labcorp or Quest is NEG.  This test looks for ANTIBODIES in your blood and more often than not your immune system is so overwhelmed you will not produce any noticeable antibodies.  This bacteria changes shape (pleomorphic-can be a spirochete, a cyst or a L shape form) and consequently it's surface proteins change as well.  

  You need a specialized IFA test (Immnuo Florescent Assay) which looks for the DNA of the bacteria in ALL of it's forms.  That is the key.  Have them test your CD57 level and test you for HHV6 as well as this is a common co morbid virus along with the bacteria Babesia, Bartonella, Rickettstia and Mycoplasmas.   This is just my opinion, but it would be wort investigating since your other doctors are scratching their heads.

[melmel67]

Please don't insult my intelligence. I heard you when you said to get a specific test. I read and understood your posts. I am at the end of the line with all these tests so I need to be optimistic! I did my research and found a doctor through the lyme association which charged a lot of money for the visit and even more money for the test which is suppose to be one of the best to check if I have lyme in my system, through igenex. So I followed your recommendation and I'm hoping for answers!!

[ewford]

Very Good!   I hope you find the answer you have been looking for.  Did not mean to insult your intelligence.  Keep us  informed!

[melmel67]

I wanted to say sorry for snapping at you by saying not to insult my intelligence. I am just desperate for answers and I just didn't want to hear that a test was going to come out negative.

[Family2011]

Hey melmel I was just following up with you. How are you feeling? Have you gotten the results back from your test? They put me on vitamins made specifically made for Fibromyalgia and I am taking Neurontin and Zanaflaz. I have not had any spasms since and I feel great! IF your tests come back negative maybe you could try those. I think about you all often. Best of luck all of you!

[melmel67]

Hi. Glad you are feeling better. I am still not doing good. I am still waiting on the lyme results as this has been the longest week of my life! I will definately keep you all posted on my results as soon as I get them. Take care & god bless

[melmel67]

Hello. I wanted to ask you a question. I called the doc office and asked about my lyme test its not in yet but the nurse said that my cd57 came back low which is suspicious for lyme. What does that mean in ur opinion. Does this usually take this long? Thanks.

[ewford]

Mine was at 60, but I have heard of others being as low as 7.  2 weeks to get test back, BUT with more people getting tested, they run them in FULL batches, so yours might have been an early sample and they were waiting to fill up the batch.  Take a deep breath.  it will be in soon.   Let me know the results.  Thnx.

[melmel67]

Hello. I was just wondering what kind've vitamins did the doc put you on for fibromyalgia? I am still having the tremors and they are all the time and I can feel them all over including my heart and head and it's not getting better. Can u tell me about the neurontin. i want these symptoms to go away already. I got my results from the mri of the spine from the neuromuscular doc and she said all was normal nothing wrong with my nerves or evidence of ms or anything and she dismissed me :( i dk how evrything is suppose to be normal but yet I feel worse.

[ewford]

Take Magnesium for the fasticulations, Borrelia utilize and create a shortage of Mg leading to muscle jerks and tremors.

[cher11]

I hightly recommend taking as little pills as necessary. Especially try to stay away from the anti-depressants. I have had fibro. since 1993. I did not know how they effected me so much until I had to go with out them this year. I suggest for pain try the more natural and holistic route. Go to chiropractor, get massages, go to accupuncturist. Use ice packs and hot baths to soothe pain. Get a routine. Go to bed and get up at the same time each morning and do not give up exercise even if you think you just cannot do it. Low impact and stretching are useful and important. Go to the pool for some classes. This helps a lot with pain and can keep fit. Get into a support group there are others that share your pain and frustrations. Medications can have so many side effects that just are not worth it. Find a good specialist. Keep switching until you are satisfiedl. Do research and ask questions. It is your body and no one else knows how you feel except you. I recommend getting a good lawyer and try to get any kind of disability right away. Keep a journal each day. A pain and sleep diary will be good. Change your eating habits and eat healthy. Foods that give you energy are important. Do stress Management techniques so you don't get so overwhelmed. Have a support system, people that are supportive of you only. Stay away from negative energy. This is not helpful. This is the best advice I can give you. If you follow this you will be able to cope with this syndrome.

[Family2011]

The neurontin is acually a seizure medication that is prescribed for Fibromyalgia. It helps with pain, stiffness, and spacity. I am able to run and walk without a walker. I take the lowest dose possible. The vitamins are bought through www.birkgrove.com. I go to these people, but I am sure you can buy them over the internet. They are made especially for Fibromyalgia. I take the FM/CFS support pack which consists of 8 vitamins. One of them is fish oil, magnesium, vitamin D, 3 B complex vitamins, cortex fatigue, and Folic acid. I skipped a dose of the vitamins and neurontin one day and felt like I did before I started this treatment plan. Once they got back in my system I felt like me again. The vitamins are fairly inexpensive. They cost $72.00 per 60 packs. They are wonderful.

[Chreey]

Hey everyone! Sorry its been so long since i have been on. Been so tired lately and so much going on. My daughter ended up in the hospital diagnosed with type 1 diabetes. My husband decided to fall 16 foot off the building they were working on. So its been a mess. Update on me. Well I have went in twice for injections in my back. First time ended up feeling worse. The second time felt a bit better for first week but my legs hurt worse. Still having major back problems and hip problems. My hips feel like there coming out of place when i walk sometimes. Legs just hurt and burn. Still have the spasms. And my eyes act up occasionally will look at a number and think it says one thing and say to myself that isn't right and look again and its a different number. I swear im going nuts. Still having migrains on top of a severe cold i have now. Still tired all the time and majorly moody. And the fibrofog omg its the worst! I cant remember anything will get up and go in a room and forget before i even get there why i even got up. can't remember two digits numbers on certain days. And my hearing seems to be affected. I have weaned my daughter down to nursing only at bedtime so getting closer with that. I have everything filed for ssi and may have to soon go in for a mental exam. Really thinking of getting a lyme test done now. Because i swear this is more to whats going on then fibro if its fibro at all. Its just intuition that i keep getting. My half brother has MS and him and i have the same symptoms so maybe both of us should get tested for lyme. Also considering seeing a rematologist how ever ya spell that lol because my neuro does seem to be in it for money and a second oppinion wouldn't hurt anyway.

[Family2011]

Hey Chreey I am so sorry to hear about your problems. We all have the same symptoms and I am taking some things now that have helped. I was considering disability until this treatment became an option. I will copy my message that I sent to MelMel.
The neurontin is acually a seizure medication that is prescribed for Fibromyalgia. It helps with pain, stiffness, and spacity. I am able to run and walk without a walker. I take the lowest dose possible. The vitamins are bought through www.birkgrove.com. I go to these people, but I am sure you can buy them over the internet. They are made especially for Fibromyalgia. I take the FM/CFS support pack which consists of 8 vitamins. One of them is fish oil, magnesium, vitamin D, 3 B complex vitamins, cortex fatigue, and Folic acid. I skipped a dose of the vitamins and neurontin one day and felt like I did before I started this treatment plan. Once they got back in my system I felt like me again. The vitamins are fairly inexpensive. They cost $72.00 per 60 packs. They are wonderful.
I wish you the best. Fibromyalgia has so many associated disorders and symptoms it is crazy. I was diagnosed with dysautonomia as well. You may want to look into that also. Take care.

[Chreey]

My mother takes neurotin and that is some strong stuff. I may talk to the dr about it once im get dd completely weaned. He wanted me to try the savella but i've heard some really bad things about it. But everyone is different hopefully it will help me and i won't have all the side effects. I have heard of taking the vitamins magnesium i believe is supposed to be for spasms and the b vitamins are for your nerves overall. But don't those only help if your body is defficient in them to start with?

[melmel67]

Ewford,
My lymes test came back and I am writing to tell you "thank you" from the bottom of my heart. I tested positive by Igenex standards. I am so happy because I finally know that I am not crazy and I knew something was causing these symptoms. I can't thank you enough and i know the lord put you in my path to help me and others. God bless you and may you continue to help others by informing about this disease.
For everyone else on this site Family 2011 & Chreey please get tested for lymes disease!!!! I know how it feels to be looking for answers for so many years and your health is not getting better and everyone around you including your family members look at you like your crazy because all your lab works and scans and mris come back normal. May god bless you all!

[Chreey]

Im glad you followed through with the test and got your anwser. So is the treatment antibiotics? I read that it can be cured at early stages but the longer you have it the harder it is. So are they saying now that you just have lyme disease or do you in fact have both fibromyalgia and lyme?

[melmel67]

Hello. I don't know exactly what the treatment is but as far as I know it is antibiotics and it is harder the longer you have it. But it's not impossible either. I will be moving in a week or so with my husband who is back from deployment so this was gods perfect timing. This is barely my first step because after so long of no doctor knowing what was causing my symptoms I finally have an answer and hope. There is a LLMD there where we are moving and I will get all the answers to my questions. I will definatley keep you all posted and updated and hope you and family2011 the best of health and that you feel better soon! God bless.

[Nikodicreta]

Hey melmel,
I'm glad you on the right track.
Ewford's advice was spot on! Good for you.
I suggest at this point to look into Dr. Garth Nicolson's work (research and treatment), as he is one of the top experts in this field.
http://www.immed.org/treatment%20considerations/LymeTickTwnsndLet2007.285.93.98.pd

Lyme and Pathogenic Mycoplasma Infections require a very specific treatment protocol to be effective.
It is imperative at this point to do everything possible to strengthen your immune system.
There is no amount of doxycycline or other antibiotics
that can can kill the infection as they are bacteriostatic and not bactreriocidal agents.
Once the pathogen's growth and activity is inhibited by the
antibiotics, only your immune system- in due time- will  be able to identify and destroy the pathogens, provided that it is strong enough to do so.

One more thing to note: Any elevated levels of yeast or fungal metabolites( extremely common in cases like yours) in your body, have to be dealt with asap. A comprehensive antifungal diet along with a prebiotic and probiotic regiment of the highest quality possible, would be in order.
Supplementing also with extra virgin coconut oil -as it has great antifungal properties - will ensure positive results.
This will take a  big load off your immune system, as the treatment with antibiotics  destroys part of the healthy flora (80% of the immune system is in the gut).
This will  give you a better chance for a successful treatment.
If you need more info, let me know.
Blessings,
Nikodicreta

[Family2011]

Hey guys! I am glad you have a diagnosis and am hopeful that your symptoms will disappear very soon. To answer your questions about defieiencies and vitamins: vitamins can help anyone and fibromyalgia takes so much out of a person the extra vitamins are needed. Deficiencies of vitamin D and B are very hard to diagnose because it can take up to 20 years for the test to come back abnormal. They have helped me with my legs, pain, memory, concentration, and fatique. I am greatful for them. Take care and keep in touch!

[Chreey]

Hey everyone went to my neuro today and he gave me 30 free sample of the savella so im going to start on that. DD is pretty much weaned only once in a while will she take the breast at bedtime and then she really isn't getting anything its just using me as a human pacifier. Kinda worried about side effects but we shall see. Also have to have a baer test done. And am going to have my ssi results soon. Also got to have doc fill out a handicap paper so i can get a plate when i need it.

[ewford]

Thank you for the support and saying advice was "spot on".  I only wish others here would follow the advice and be tested correctly for Lymes and Mycoplasmas.  They all have the same symptoms and are being told it's Fibro, Lupus, ALS, MS, Hashimotos, Shogrens, Etc.  But when you get an additional diag of , let's say, Fibro, and you are also diaged w/ IBS, sinus infections, CFS and others, YOU REALLY NEED TO LOOK INTO LYME AND MYCOPLASMAS.  

Melmel, Niko is right as well, you need to reduce the inflamation (inflammation) and work on the fungal part as well.  This illness is actually a bacterial, viral AND fungal infection wrapped into one.  ALL need to be addressed to truly get well.

[Chreey]

Im read some of the info on lyme disease and the testing. And im going to get tested for it just got to save up the money. Since the one lab doesn't bill insurance. There is a special disease specialist in lafayette indiana its about 45 min from my home that im going to check into so insurance can pay for some of it. I will probably have to have a refferal though im not sure. First day of the savella went ok just feel a little nausea.

[Family2011]

Good luck to you and your testing. I was on meds and vitamins and now none it is working. It must have been a coincidence. I am frustrated!

[melmel67]

hello. An update I just moved to a new location to be near a llmd and start treatment. I am praying the lord opens doors because everything is being closed in my face in the state I am in. We have to persevere and move forward because that is what god wants us to do~ not to give up~ I am including myself in this too. I hope that both of you find meds that will help you along with the help of the lord. I too am feeling sick and now lonely too! UGH! I will be praying for both of you that you all start feeling better soon.

[Chreey]

Hello all just got back from my ssi mental exam and i would say it was a big FAIL i never felt so stupid in my life. My memory is far more worse than i though. I couldn't count backwards by 7's i got lost and i couldn't even remember 3-4 digit numbers. And one question was what is the difference between a cat and a monkey i said one is a feline and one is a ape couldn't remember the word primate. Couldn't remember capital of italy or what continent it was on i have to point in the air as if i was looking on a map. But one good thing i got the date right LOL! So if this goes anything like my sons did i will have my first decision by the end of next week.

[Family2011]

You are not stupid, it is part of fibromyalgia. Not to mention you have four kids. I probably couldn't tell you my name. I hope you get it. My husband wants me to file, but I like working. It is hard, but I like to socialize and be a part of something. I am praying about it. I have been told I have essential tremor by three docs but no one said it could be the cause of my spasticy, but from my research it can cause it. I guess that is why the medication is helping. I wish these brainiacs would have mentioned that to me before I drove 3 hours to go to the doctor and before I ran thousands of dollars in tests. MD stands for medical dummy... Take care and keep in touch.

[melmel67]

LOL! MD stands for medical dummy that is what I needed to hear today to start my day with a smile. Thanks! My husband wants me to file for ssi also but I will not do it because I have the hope of one day being able to drive again and especially work. I am tired of being isolated and not being able to work and I can't wait to get out there and show the world what I am capable of doing. I am under a humongous amount of stress right now with the move, trying to keep my family together, homeschooling now and on top of that trying to keep a house in order. I hope you guys start feeling better soon!

[Chreey]

hey all sounds like you got a full plate melmel. I think stress is a big part of my problem as well. I called the neuro today because i started that savella monday and doc told me he wanted me back in a week im guessing to titrate my meds up since he only started me on 25 mg daily. And the receptionist didn't make my apt until oct 17 so i called to see if i should increase it myself and she got me in on oct 6th. Family these docs don't care they are all about the money. Im starting to really feel this way about my doc. After i get my first denial from ssi im going to make an apt to get a second oppinion from a rheumatologist and check into the lyme testing also. Just got to find out if i need a refferel from neuro or from primary doc or what.

[melmel67]

Yes Stress is a huge factor and lately since my move and homeschooling my boys and living in an expensive state and not being able to work has added more stress on my body! I thought by god telling me what I had it was going to be easy peasy but of course not! I just ask god for strength because I have a lot on my plate. And we the also rescued a dog from our hometown a couple of weaks before we moved and the dog looked like it was dying and it had mange. And yes, some doctors are all about the money that's why they became doctors. A very few actually care about the patient. My experience with the rheumatologist was the worst I ever had and I hope it goes better for you. He treated like if I was not a person just a case that needed to be put apart and investigated for what he thought was wrong with me. I said nothing and he asked what insurance I had and started running blood work and xrays and the worst was he grabbed me hard at my joint areas and asked if it hurt well ya it hurts if you grab someone super hard! So never again am I going to see that nut! Well it's a brand new day and hope you have a good one!

[Family2011]

Hey you all. Mel Mel I will pray for you and if you two don't care I would like to put you on our church's prayer list. I will just use Mel and Chreey if ok. The rheumatologist was a waste of time for me also. He gave me the dx of fibro and then sent me to a fibro specialist. How long have you all been sick? Did it come on all at once, or was it slowly progressive? My legs pretty much started over night with a few encounters prior too, but nothing major. The rest of it was slowly progressive. I am just curious.

[melmel67]

Goodmorning. I absolutely do not mind if you put me on your church's prayer list. I have faith in the lord I just don't know his plan for me but it's not for me to know. I just want to start feeling better and that's what I have been praying for. I have been sick for almost 3 1/2 years. It has been slowly progressive to where for those 3 years I was just dizzy and then all of a sudden this beginning it hit me like a ton of bricks and got very bad. Thank you so much you don't know how much this means to me that people out there care! Have a good day and I hope you get better soon too!

[Chreey]

I don't mind if you put me on prayers list. And mine started about 2 years ago. It started by my hands jumping of the bed like a crazy hand from the adams family. Then led to spasms all over my body and now to aching and hurting and migrains and fibro fog and just zoning out and not hearing anything. Had an abnormal eeg also two years ago and thats all they found then and then went back after i had my child cause i promised my mom i would since my brother was diagnosed with ms and then found out it was fibromyalgia in i think it was june. well time to hit the sack night all.

[Chreey]

hello all just an update went to neuro today he upped my savella to 100mg daily and i go back for a test on the 13th and recheck on meds the 17th. got my medical records today from him its also noted in there about myoclonus and restless leg sydrome and i asked him about it and its all from the fibromyalgia. My ct also said i have mild degereative disc disease changes and narrowing of the l5-s1 and mild degenerativer changes in the facet joints what ever that means lol

[Chreey]

fibro fog its actually 50mg a day

[melmel67]

Hello. Is the savella working for you? Why did your doc up the dosage? So has any of the medications that your neurologist put you on help you? I am still waiting for my appointment on the 18th of october to see the LLMD. I am anxious to see her because I am not on any medications and I am only getting worse seems by the day :( I am now worried because my son sees how sick I am and telling my husband that I don't look well. I don't want my kids to be worried about me. I hope the medication starts working for you and you find what's wrong with you soon. Take care & god bless you.

[Chreey]

So far the savella isn't working i was kinda hoping it was only cause id been on it  11 days. thats why he upped it to see if it would finally work. And the injections don't help either. Sorry about your kids having to worry about you. I guess you could look at it this way at least they do care. My oldest son doesn't give a rat. And i swear every day that goes by i think his personaility is more psychopathic. And that maybe the stress from dealing with him has put me in this position. So i guess thats all i could say is be happy that they love you so much and don't want to see you in pain. And it may make them feel better if you let them do little things for you so they don't feel helpless and not able to do anything.

[Ronmell10]

I have been diagnosed with fibromyalgia recently...I to have applied for ssdi.I will have a decision some time this month.I am taking Savella,and other meds also.

[Chreey]

ronmell is the savella helping you what mg are you on and for how long? Have you tried any other meds?

[Family2011]

I am sorry your kids are having a hard time dealing with this. Mine use to cry themselves to cry at bedtime, thus I would cry once they were in bad. Very sad, but now my we make fun of my crazy walk. he can duplicate it rather well. When my "tummy" hurts they rub it for me, or give me massages when my neck and back hurts. They pray every night, "Thank you God for fixing my mom." Even though I am not fixed I tend to sit and not move when my legs are crazy so they don't see it. It is so hard with little ones. Chreey I am sorry you feel that your oldest doesn't care. Maybe he/she does not understand it? I will continue to pray, and try the neurontin to see if it helps. Between that and the vitamins I feel a lot better as far as my legs. I have a new dx by the way: advanced benign essential tremor... We will see how long that diagnosis will stay. Take care everyone.

[Ronmell10]

Yes the Savella is working for me i do believe.I take 50mg,and have been on it almost a month.And i understand about the children.We have a 2year old and a 9mth old..It's terribly hard on me but it's a job i can't quit.lol

[Sandredeez]

Hey all,
I need some help. I have in pain for years. I first found out I have thyroid problems. Now they are fine with meds. Then my vitam D was low. I take 50,000 units of vitamin D a week. But was still having chest pain, pain all over my body, lots of muscel spasims. They found out I have fibromyalgia so they put me on 60 mg cymbalta and something mild for pain. I feel like I am going crazie. I can't remember things and can't make decisions. The Dr up my cybalta to 120 mg. I don't like myself or the way I feel or act. Can someone please help me. I feel I need to be put in the hospital for a while. My Dr Rumeatoligist says I need to stretch and exerice. It is hard to work. I have panic attackes going to work. Any suggestions?

[Nikodicreta]

Investigate Pathogenic Mycoplasmas.
Sounds like a full blown widespread Incognitus-Fermentans Mycoplasma
Infection.
The infection has affected your neurons and your central nervous system.
Malic acid will help with the controlling the  muscle toxicity caused by
Tartaric acid, for now. And Magnesium Chloride (transdermal) will help.
Your cells' mitichondria are dysfunctional, so Co-Q10 may help on a temp basis
But if the infection does not get eliminated, your conditions  status is chronic "autoimmune and neurodegenereative disease" that comes with a variety of labels.
Please look up also Dr. G. Nicolson, an expert in this.
My advice does not constitute professional consultation.
Blessings
Nikodicreta

[Family2011]

I would take your medications to the pharmacist and have them check to see if they interact with one another. Cymbalta can cause depression, anxiety, and suicidal thoughts. If you began feeling like you are going crazy and not liking yourself after you started taking this medication then you should come off with the doctor's instruction. Best of luck to you.

[Sandredeez]

I went to the DR today. She was wanting to write me out of work for a while but I can't afford for her to do that. I keep trying to work . Some days are hard. I go back to my Rheumatologists on the 27. It is hard to get apointments around here. All the Dr's I have talked to thinks that Cymbalta is the best meds for fibro. I have had drepression in my past and been on anitdepression. I'm not having many spasm now. But my arms, back , neck and legs hurt like I have the flu. I hate complaining that I am still hurting to my Dr's. The fog I have seems to be one of the worst things and it make me feel like I am going crazy. Thanks for your help. God Bless you all!

[sharona72]

I have had Fibro since 1995 and i am 39 now  i have tried all the meds the best one i feel works the best for me is Cymbalta, and naprosin  I also take a fluid pill because i have pulminary edema and it works.  Once you get rid of the inflamation (inflammation) in your body you will find alot more comfort i belive.  I also have meds for muscle spasms which i get alll the time.  Alot of stretching and walking is good for this disease.  I wish you the best with this it is miserable if you cant find the right management and i have had this for years and i am still struggling to manage it.  

[Chreey]

well just got back from my testing. And the test he did i had done a couple of months ago i was one where i had to look at the flashing checker board and the other had to put headphones on had have a clicking in one ear and a hissing in the other. I will be suprised if i pass that one this time. During half of it i had the nerves on my right side of my brain firing off was driving me nuts. And i didn't have that happen the first time i did the test. So i go on monday to get results, injections, and recheck on meds.

[Family2011]

Are they checking you for MS or what?

[Chreey]

I actually have no idea what he is checking me for. I had this test done about 4 months ago and it was fine. I told the doc where my migraines have been and that ive had some balance and coordination issues and dizziness and he said ok we are going to do this test. The last time i had these test done though it was part of the testing for MS. But he told me that i didn't have MS because the test came back ok and the mri as well. I told the guy about the spams in my head after the test was done and he asked me if i had a history of seizures and i told him well my first eeg was abnormal but the last one that he just did a couple months back looked much better. Its just crazy. I still worry about having MS cause fibro and MS symptoms are so much alike. My brother who has MS seems to go through alot of the same crap that i do.

[Family2011]

Cheery, Have you had a spinal tap? That is usually a fairly accurate test for MS.  I have dysautonomia (orthostatic intolerance) which is low blood pressure and that is why I get dizzy, headaches and such...It is one of the associated disorders of fibromyalgia from what i can tell. If your test comes back normal maybe you should ask your md about that.

Melmel, have they started you on antibiotics? If so, are they helping you?

[Chreey]

I have not had a spinal tap done he was only going to do one if one of the other tests came back abnormal. If this recent test is fine and none of the fibro meds end up helping a spinal is something i will ask for. Well went to pharmacy cause i am running out of my free samples of savella and a 30 day script taking two tablets a day for me is a little over a 100 bucks ouch! I got three days worth filled i can't afford that and who knows if come monday it won't be changed again since its not helping. Also got my first denial for ssi. Basically it said that yeah im disabled and not capable of doing any work that i have previously done but that i am capable of light duty work sitting on my butt. So i guess i will be making a apt with a lawyer come monday. That ssi doc was probably a big joke since i know darn well i failed the memory part but they probably sent me to him just to evaluate my depression. Because i did put that on there cause i had been treated for it in the past. And the ssi doc probably was just evaluating for that and put that im not depressed and didn't even report any of the memory problems. Who knows i guess.

[melmel67]

Hello. Hope you all r having a good sunday. I have my LLMD appointment on Tuesday and I cannot wait. I am now very concerned because my husband is having the same symptoms that I am the nerves jumping and pain all over and the feeling out of place. I need to get him in asap to see an LLMD because i know its something (lyme) he caught from me :( he is the one who drives us around and works and I hate to see him in pain. I have not had a spinal tap either but now more than ever I know it's not Ms because its too much of a coicidence for us to both have the same symptoms.

[Family2011]

Good luck with the SSI, and those docs are paid to deny people. I am sorry your husband is sick too. Is Lyme contagious? I did not know that. Take care--we have been praying for you all.

[Nikodicreta]

Hey Everyone.
Something that I wanted to pass along.
The contagious aspect of the co-infections that commonly accompany Lyme is something to be aware of.
Because when  the Lyme tick is also infected with a mycoplasma, it gives the  same characteristics and effects of a pathogenic mycoplasma infection. In GWI, according to Dr.Garth Nicolson's research, a great percentage of the returning (from the Gulf war) personnel's spouses and children  carried the pathogen, transmitted by saliva or sex.
The ones not showing symptoms, are probably the ones with stronger immune systems, low or no genetic predispositions and lack of significant triggering events and factors, keeping those pathogens dormant.
You can go to immed.org for more details. The CDC authorized millions for this specific research, as one can imagine, the health implications are quite devastating.
Too bad that not many Specialists are up with this research.
So next time you see your neuro even LLMD, make sure you request a complete Mycoplasma  panel.
What is going on in the Health System in a way, is similar to the events surrounding  9-11 before the attack. The knowledge and information was there all along that could have prevented this unfortunate attack on the twin towers.
However, the lack of communication and sharing of critical information,
between various Agencies, at the time, is no different in the Medical System where all this information is available, yet the vast majority of Doctors and Specialists still have NO clue! It is beyond comprehension,
that hundreds of thousands, if not millions, of people are suffering unnecessarily from Autoimmune and Neuro-degenerative Diseases because of this!! And most of them for life.
All these infections are probably among the fastest spreading infections in the world right now!
Is there perhaps something going on? Any ideas?
Please share, but maybe use a new thread. This one is growing too long!
Off topic a bit, but nevertheless, very pertinent subject to my opinion.
Take care,
Niko

[Chreey]

going to start a new thread with a update this one is getting pretty long