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]

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

[TheLightSeeker]

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

[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.

[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.

[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.

[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 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]

Are they checking you for MS or what?

[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.

[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 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.  

[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!

[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.

[TheLightSeeker]

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

[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?

[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

[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.

[Chreey]

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

[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]

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.

[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]

fibro fog its actually 50mg a day

[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]

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.

[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!