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Fibromyalgia update

well went back to the neuro today. And apparently even though i had spasms on my right side during baer test it was normal. I told dr i couldn't any more injections and that they werent helping. And that the savella wasn't helping either and he wants me to give it another 3wks and come back. i asked him for some more samples since it was going to cost me little over 100 dollars for the month so he gave me a months worths of samples. Im going to call and make a apt with a rheumatologist since i got my ssi denial and we will see where that goes. I guess it couldn't hurt anything.
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Avatar universal
That is odd that it came back normal. What is your next step? I am now having jerking in my arms and head. It is not intolerable at the moment, but I am also on some heavy doses of medications, so I can't imagine what by body would be like without it.
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Im going to call tomorrow and make apt with rheumatologist for second oppinion. Also waiting for lawyer to call back to see if he is going to take my case. Other than that i got back to my neuro in november.
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Well, keep us posted. How long did it take to get your first denial letter in?
Avatar universal
I applied in june i think it was but they never recieved the online app so i got my apt with them in august so i guess you could say roughly 8-10 wks. I canceled my apt with the lawyer my doc wanted me to go through so i could get a lawyer that my step mom is using who happens to be the same lawyer that won his first case with my great grandfather and the lady called today and gave me a bull crap reason why he could not take my case. I worked for 3.5 years altogether first as a cashier and then as a pharmacy technician but i still don't have enough credits so i had to file for ssi and they are trying to tell me that since my husband works i will not qualifty. We are a family of 6 and do not have much income and are 3months behind on mortgage for crying out loud. And ssi didn't deny me cause of income guidlines they just tried stating im capable of light work. When you have your over the phone apt that is the first thing they check for is to make sure you do not make to much money. so first thing monday morning i have to call the lawyer my dr wanted me to go through to get an apt and i just hope it doesn't take two months. So very frustrating.
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Oh no. Can you get financial assistance in your area from local charities? I hope it comes through for you. They will undoubtedly give you a run around because they want to postpone it as long as possible.
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family im not sure i can get heating assistance one time a year but have to wait until nov 1 to apply. I have an apt with lawyer 2nd week of novemeber i believe. They denied my son again also so off for another hearing i go for him. They said his impairments arent enough to qualify him. Really im going to take the photos of the huge holes in my wall and his referrals from school where he stabbed a kid in the back with a pencil and another for spraying a child with axe and another for slamming a kids hands in a locker and his current grades which have fallen again. they were a F in math D in science and language and a c in social studies down to all F's only grade that hasn't been updated is the science. And im going to show this all to them and ask them exactly what the he** does it take for you people to realize this child has a problem and is not like other children his age and shows that he has a severe impairment. I have no idea what im going to do if he gets expelled from school and i believe that to be his goal because he doesn't care. :(
Avatar universal
Oh honey, you have had such a hard time. I am so sorry. Is there anything I can do? Have you taken him to a children's psychologist to see if he may have asbergers or the obedient disorder? Are there any special schools around there for children with behavior issues? I will pray for you and your family. Surely there is some relief out there for you all.
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yeah its been a rough road and continues on. He has seen 3 different psyciatrists and 2 psycologists and two therapists since we started are journey back in 2006. And his dx is Adhd/severe odd (borderline conduct disorder) last i was told and mood disorder nos. I have tried to look up differen military schools,boarding school and boot camps. I found one military school but searching is quite difficult and doesn't seem to be a lot of options. He has been on just about all the adhd meds concerta,focalin, tenex,strattera, vyvannsse, and takes adderall as needed. And has been on multiple mood stabilizers to from serequal,lithium,risperidal,abilify,depakote.
Avatar universal
I am so sorry. I know it is hard on you, but it must be hard on him as well. If he truly hass ODD and Adhd then he can not control it. It is very challenging. Have you heard from MELMEL since you started a new link?
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Nope i haven't heard from melmel you seem to be the only one posting. his adhd seems to be under control with the odd he chooses to be a but head and thrives on it. I love him to death but i think eventually he will be dx with being a pyschopath. Cause he can't possibly be dx with that now even if he fits it to a tee because the docs and there little books say that he isn't old enough. I am taking him back to my neurologist with me on monday. Going to have him do his med management from now on im fed up with his psychiatrist and its just so far to drive and the neuro is willing to do it. Cause if he wasn't i was really thinking of weaning him off everything and leaving it in gods hands.
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Oh honey, I am sorry. Maybe the neuro will help.
Avatar universal
Hi guys,
I am so happy to find you all I had read since my last post almost a month ago I think that you all were going to start a new thread but I didn't get back on until now. Well I see where things are with you all and well things haven't changed for me either, not yet. The good thing is that my husband is feeling better since he was able to start on his antibiotics asap thank god so that is better for him so he will get better soon and so far so good. As for me I am finally taking all of the medicine I am suppose to and well it's taking a toll on me since yesterday and today was not a good day I have been extremely dizzy :( this lyme stuff isn't fun as far as all of the medicine I have to take but I will do it for my kids so I will not see them worry about me anymore because that is what's really killing me!
Chreey~ I am sorry to hear you are having problems with your son I will definately keep you and him in my prayers and hope that things get better for him!
Family2011~ I hope the medicine starts working for you I would love to hear that we start feeling better and that the lord heals us completely and we could really enjoy our lives again.
It makes me happy to chat with you two again because it's been hard especially since my husband is gone again and I am alone in a big city and not feeling well. I thought I had a friend here but turns out I didn't so ya it's been hard! thank you all for being here even to just listen. may god bless you both! Take care!
Avatar universal

Its good to hear from ya. Glad you hubby is doing better. Sorry to hear your not doing any better. I hope the meds start to work for you soon. It has to be hard with your hubby being gone. mine has to leave for work as well sometimes. He will be gone for a week and then home on weekends. He hasn't had to do that since he got hurt and is working in the office. He goes back to the doc on tuesday and im not sure if he is going to be released or not. Well i have my ssi apt with lawyer tomorrow i hope he takes my case. I also have an apt with a rheumatologist on the 29th for a second oppinion. Alot has been going on here the past week. My body seems to be feeling a bit better beside occasional backache but i know its only a matter of time before it all strikes again since that is the way this crap works. Also my hubby came home last wednesday from work not feeling well. And sat me down at the table to tell me that he had been messing around with this lady, The lady is his aunts friend and it started through the forwarding of text messages funny pics ect. And then they started talking. And i guess he met the lady twice and she sent him a pic of her face and her butt along with some sexting. And this broke my heart. Since we have had our problems in the past. About 5 years ago he did the same thing but it was with my best friend and he ended up having feelings for her. And then he and i split up 2 years ago and i was with someone else. I thought we were done and was getting a divorce. Well to put a long story short. We got into a physical fight ended up in jail and dcfs took kids and we had to fight to get them back. And that was supposed to have been rock bottom. Supposedly nothing ever happen with this lady or my friend for that matter. But i still feel its cheating. He had to have some intentions for going to meet the lady. And i feel that the only reason he told me is cause her husband texted him to quit texting his wife so he got scared, And come to find out her husband is a county cop. So he is really kissing my butt tells me he doesn't know why he does stupid crap like this it won't happen again bla bla bla and he shut the texting off on his phone. Said he didn't feel loved by me and wasn't getting attention. Which that may be true do to everything i deal with cause of fibro and some lack of effort on my part but still if you love your wife and want things to work you don't go looking for attention from another woman. He appears to be trying but things just still don't feel right. So i don't know. Sorry for such a long post.
Avatar universal
MelMel is back! YAY. I am glad you found us again. I am glad your husband is feeling better. Hopefully the antibiotics will kick in soon for you as well. chreey I am so sorry to hear about your husband. I know that not feeling well takes a toll on relationships, hopefully he will understand that you can not help the fact you do not feel well. I will pray that you two either make it over the hump and move on, or you two go your separate ways and start new lives. I just hope you are happy. Take care you two.
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well just got back from lawyer apt and it didn't go well. It seemed as if he didn't believe in fibromyalgia even though he didn't say that. Said that all my test came back ok that it didn't appear that i have anything wrong with me besides my one seizure on my eeg. And that even if i did win since i don't have enough credits and i have to file for ssi and my husband works that i probably won't recieve much as far as a monthly benefit. He said he will try but doesn't look promising and he is going to contact my neuro and get his oppinion on whats going on. And i go back to see him in january.

Avatar universal
Sorry. Can you try to find a part time job so you can work to get extra points? I tried to file the other day, but I make too much. I put in a months notice at my present employer, because of my health. I have to wait until I quit before I can file. I was hoping I could try to work a little longer, because we need the money. Keep your fingers crossed.
Avatar universal
I am so sorry to hear about your husband. I know I have little tolerance for cheating, lying etc.... you have to trust your heart and pray to the lord and see what direction he gives you. I know the lord does not approve of divorces but he doesn't approve of cheating and lying either. I am not going to give you advice on what to do because it's between you, your husband and the lord. But I will pray for you and hope that things get better for you especially since you are not feeling well. Sorry I hadn't written back I used to get alerts on my phone when someone would write to me but the alerts dont show up anymore. Take care Chreey and hope things get better soon!
Avatar universal
Hello. How have you been? I know I have been away for a minute but I have you two on my mind and ever so often I wonder how you all r doing. I am on a military lymes group that is helping me by answering all my questions with this lyme stuff. I know there are bumps along this journey and I am trying to get through them. Just a while ago I was talking to God in my thoughts and asking him to heal me and it popped in my head that first I had asked him to tell me what was wrong with me because NOBODY could figure it out! Then all of a sudden he told me, it took a while, but he told me what was wrong. Now I know that this is going to take time but I am going to get better ONLY with his help so that was comforting to hear from him! I hope that you two start feeling better and I know there are good days and lots of bad but I hope one day I hear from you two and that you all are doing better! Hope you guys had a happy thanksgiving! Take care & god bless!
Avatar universal
Thanks Mel for your inspiring words. I go for a third opinion on the 12th and a nerve conduction study today. My sister has started having the same symptoms as me, so I may ask them about DNA testing. I need to trust God, and some days I do. When I start feeling sorry for myself is when I loose focus. I hope that you and your husband heals quickly. I will continue to pray for you and Chreey. Happy Holidays!
Avatar universal
I do understand the jerks I have had them for a long time and the other night I thought my head was going to never stop. Mind this is only when I'm in bed. The good and bad days too 20yrs on I'm still having to cope with them and yes recovery is a full time job in itself!!  The one thing I hate with a passion is the sense of lose I feel when I recover? If you can call it that. One day they may find a cure
Avatar universal
Hey all sorry havent been on for awhile. Thanks for all the prayers. Hubby and i are getting a long a bit better and working on things. I gave him a lot of altamatems. I went and seen the rheumatologist this week and he said that although i have some symptoms of fibro i don't meet all criteria for it. He did some more blood work and is trying to rule out some types of autoimmune diseases. And wants to do a sleep study to rule out sleep disorders since he said that sleep disorders can mimic fibro symtoms and that only about 20 percent of people realize they have a problem. And if those tests come back ok then he said i have to get a second neuro oppinion. Because apprently the jerkings im having are myoclonus and the spasms are fasiculations and they are a neurological condition so he says there would have to be something neurologically wrong that my neuro didn't find. So i go back 2nd week in dec to get blood work results i also had him test me for lyme. And im going to have the sleep study done after the first of the year so hubby can't take a vacation day to get kids off to school ect. My neuro told me the myclonus and restless leg sydrome i was experiencing was from the fibro and i guess that isn't true. The rheumatologist told me that sometimes these disorders go along with fibro but fibro itself doesn't cause it. Take care everyone and i will try to keep ya more updating. Happy Holidays
Avatar universal
I am so happy to hear that you and your hubby are in better terms! I am glad that you decided to get tested for lymes. I still don't know a lot about lymes and I am learning as I go but I do know that you have to use a lyme sensitve test that can be done through IGenex labs. I don't know the specifics and if you want to contact ewford he is on the lymes page on medhelp he can lead you in the right direction. He is very knowledgable on this issue. I hope you get answers soon so you can get the right medication. Merry Christmas and happy New year and I will be praying for you and family2011 that the new year will bring us "healing" and I am trusting and expecting the lord to answer that petition. God bless!
Avatar universal
I know what you mean when you say when you start feeling sorry for yourself you lose focus~ same hear. I would love to say that I am positive all the time but that would just be a big fat LIE! I do too have days when I don't know what to think and I second guess my diagnosis and the medication and how I am feeling...etc.... and it was very bad when all of these symptoms started this summer and i mean really bad. Now I am trust the lord and praying asking and begging for mercy and healing and expecting it as well. I do have my off days and I just try to pull it together and I thank god I have my husband because he snaps me out of my pity parties that I have some times and brings me back to reality. I am sorry that your sister has the same symptoms that you do I know how hard it is for not only you feeling sick but a loved one having the same thing or same symptom that you do. I hope you both get better soon! Merry Christmas to you and your family and Happy New years may it bring all of the blessing of healing! God bless!
Avatar universal
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