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.

[Family2011]

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.

[Chreey]

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.

[Family2011]

Well, keep us posted. How long did it take to get your first denial letter in?

[Chreey]

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.

[Family2011]

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.

[Chreey]

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. :(

[Family2011]

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.

[Chreey]

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 (adderrall) as needed. And has been on multiple mood stabilizers to from serequal,lithium,risperidal,abilify,depakote.

[Family2011]

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?

[Chreey]

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.

[Family2011]

Oh honey, I am sorry. Maybe the neuro will help.

[melmel67]

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!

[Chreey]

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.

[Family2011]

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.

[Chreey]

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.

[Family2011]

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.

[melmel67]

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!

[melmel67]

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!

[Family2011]

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!

[phibs]

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

[Chreey]

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 (symptoms) 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

[melmel67]

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!

[melmel67]

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!

[Family2011]

Do you know what they are caused from?

[Chreey]

Hi all just an update here. Lyme test from rheumatologist came back neg not sure what lab was used. Also my test for inflamation (inflammation) came back neg but i tested positive for antigen that cause diff types of arthritis. Also my vitamin d level was very low doc said that most people have a 50-60 level and mine was at a 18 so taking 50,000 units twice a week. Also have to get an xray done then possible mri for a certain type of arthritis its not rheumatiod arthritis its some long word i never heard of i go back on the 6th to find out more also have to get my sleep study done. But so far the vitamin d hasn't affected how i feel.

[nick776]

ask doc for neurontin a lot cheaper like 7.00 dollars a month works good for me i treid everthing nothing else worked but this for my fribro

[nick776]

ask doc for neurontin a lot cheaper like 7.00 dollars a month works good for me i treid everthing nothing else worked but this for my fribro

[counsellor34]

Hi,
Forgive me for what may seem like an intrusion here as I can see that you  lovely people have a history which has helped all of you in terms of support, empathy, encouragement and genuine caring.
I am new to this forum. I have Rheumatoid Arthritis, Fibromyalgia and Sleep Apnea. The apneas are what prompted me to write as I can see that Chreey is about to have a sleep study done. I just wanted to say that since I have received treatment for my Sleep Apnea in the form of a C PAP mask, my symptoms regarding the FS have greatly improved. I hope too that this is the case for you and would be very interested to hear if that is the case or otherwise.

Thank you

[melmel67]

Happy New Years! I hope and pray that the lord brings all of us better health this new year! I have been pretty busy and hadn't had time to get on as much but here I am. An update with my symptoms well I am off all antibiotics because the last one I was on (omnicet) caused my symptoms especially the dizziness to increase dramatically-like if that was possible! I have not felt good at all in the past week and I am praying this goes away soon and I atleast get to the point of being able to manage my symptoms. I am seeing a new doc since I moved and she is wonderful. She is really understanding and gets me completely! I am very happy with her and she is starting with the basics and wants to help me! I am on some basic med before she gets me on the antibiotics road again and I am hoping her approach is much better than the other doc I saw! I hope to God that we have a great year filled with HEALING, HAPPINESS, LOVE, AND MERCY! God bless :D
~Counsellor34~ I am glad that your cpap machine is helping you with the symptoms you were getting! God bless!

[counsellor34]

Thanks for your response-Yes at least I am not falling asleep at my desk anymore or at dinner in the middle of a conversation!

Getting a proper delta sleep has improved my muscular pain-not that I don't have the pain anymore but it is not as exruciatingly painful now.

Its great to hear you have a new doctor who seems to be giving you all the right messages. I have a great relationship with my rheumatologist ever since she said to me

"Look at me Mary, look at me straight into my eyes. I WANT TO TELL YOU-I KNOW YOU ARE IN PAIN!"

We haven't looked back since then-almost ten years ago.

[Family2011]

I lost this thread somw how or another, but I found my PEEPS again! I hope you all had a wonderful New Year. I hate that you are not feeling well. I was hoping that you had it beat! This is what is going on with me...I quit my job (still have 1 part time). I filed for disability. I had a 3rd opinion and it is somatization disorder. I am going to therapy and they think I may have a borderline personality disorder, which stems from the somatization because I am always feeling bad etc...I feel I am on the road to recovery, although I see it will be long and bumpy, but I have hope. I will continue to pray for you all. Counsellor34 you are right, these two have helped me so much in the past 6 months. They are my gaurdian angels. Take care everyone!!!

[Chreey]

Hey all councler glad ya found us. And glad the mask is helping. I don't think i have a sleep disorder but they do say but people arent aware of it. I think the only reason why im so tired is cause i hurt all time. Melmel that ***** with the antibiotics how long is the treatment course for lymes? Family i would be a little leary with having 3 different diagnosis now. If you feel that its something mental than maybe. But don't let docs make you feel like your crazy. Regardles having the issues we do it wouldn't hurt to be in councling. And as for the job its amazing that you able to hold down a job period weather it be part time or full time. As for me i have to reschedule my apt with rhuematologist i ended up with the flu on my birthday had that for 4 days my husband slid on ice and hit a pine tree and then this week i ended up with a sore throat a migraine and a fever. So i have to get my xray of my soratic (sp) done and get an apt and still do the sleep study. So far the vitamin d isn't helping any.

[Family2011]

You are right my dx's have changed frequently. I just know I am tired of tests, etc...I will go on the treatment plan for somatization disorder, in which I have accepted that diagnosis. I am actually starting a small support group. I have one person already interested in it. As far as the other, I don't know and I do not care. I will not take any other medication. I think we have all been through so much, so labels do not effect me at all. I just want to get better. We can't loose hope. If this treatment does not work with 100% of my effort then I will reconsider and pursue more opinions, but until then I will accept anything within reason.

The flu and pneumonia has been terrible this year. I hope it passes soon. Pneumonia has gone around very badly around my family. Hopefully we are all over it now.

Mel how are you? I have not seen you post anything in a while. Take care all.

Just out of curiosity, does the weather effect your pain and mobility? We have had a very mild winter, but in the past week it has been teribly cold and my pain has increased ten fold.

[Chreey]

The cold is aweful it makes my bones hurt even worse. And i think i may now have phnemonia i do know that my ear is clogged and it really hurts and the netty pot isn't helping and neither is decongestants. i just hate infections apart from the pain from them i always seem to get back spasms with infections its really weird and painful.

[Family2011]

You should go in for an x-ray if you suspect pneumonia. I have had a terrible cough that has been around since October. I think it is finally starting to go away. Antibiotics has given some relief. Decongestants is a waste of money. I heard on a t.v. program that they do not work, yet they make a ton of money every year. I was just wondering, because I was at a pain level of a 5 or so when getting my kids off the bus and when I came back in I was at about an 8. Australia would be a wonderful place to be. :)

[Chreey]

Hey all well im feeling much better as far as being sick goes doc just said i had a chronic sinus infection. And i found out what that word is that the doc is tested me for its called spondyloarthropathies anyone ever heard of it?

[Family2011]

I googled spondyloarthropathies and several websites came up. My brother and grandfather has Ankyolosing Spondolitis and inactivity makes it worse along with caffeine, nicotine, and INACTIVITY. Ankyolosing Spondolitis can be debilitating, but he is able to work fulltime. He takes shots once every two weeks and it has helped him a lot. There are several exercises that will help with this condition. It can be very painful. At one point he was unable to turn his neck or back at all, but now he is able. Some days are worse than others. It is genetic, and it usually passed along the male genes, but women can get it. He has been able to manage it very well, but his diet and exercise along with medication has been very helpful for him. It will be a life long battle, but as long as you follow the doctors advice, some normalcy will come back to your life. Good luck to you. If need more information please let me know.

[Chreey]

That is the confusing part to me is the inactivity. Cause i clean everyday and i have 4kids. The two youngest is going to be 4 and is constantly into stuff and the baby is going to be two. So im constantly up and down and doing stuff. It does seem to be worse in the morning eases up a bit between 1-4 and then back in the evening. And as of late its mainly my legs and back. Some days i just can't move at all and to get up i have to have my husband put his fist in my back to put pressure so i can get up. Idk i go friday to get the xray and seen doc.

[Family2011]

It seems as if you are active. He has days like that too. Let us know what he finds out. You are in my thoughts.

[Chreey]

well xray was fine no ankylosing sponalitis. So doc wants me to have sleep study done really thinks its going to come out abnormal. And then an mri of lumbar area said my ct 6mos ago something was close to pinching a nerve. But thinks that the sleep study is in the top 5 of what is wrong.

[Family2011]

Thank you for letting me know. Keep me posted. As for me, this has not been a good week. Just out of the blue I got bombarded with my symptoms again. I was back using my walker part of the week. My body is frusterating, on a positive note, I only laid down for 15 minutes today and that was because my back was hurting. I did not feel as if I had to sleep. That is a positive, but nonetheless, I will keep trucking hoping to understand this complicated body I am in.

[Chreey]

Sorry to hear that your symptoms started up again. And it is very frustrating. The moment you start feeling better and are like oh wow this is what is feels like to be normal and you try to catch up on all the stuff that fell behind boom its back again and back to the drawing board. Im just tired of no anwsers to what is really going on. If its fibro then fine so be it. But i feel theres more to it.Rhuemy said i should get a second neuro oppinion cause alot of my symptoms are neurological but havent gotten an answer to any of it. And im tired of spending money i don't have for all these tests. Im about ready to give up. Got my denial from ssi again so off to court we go. None of these docs or people seem to understand how bad i feel most of the time. I would love to work i would love to get back into pharmacy but i just can't do it. It takes me all day and everything i have to just take care of my houshold and still is so much and makes me so stressed out and witchy. And im one of those that hates taking meds but docs are only interested in tests to try to find out whats going on instead of trying to also relieve my pain with either pain meds muscle relaxers or something. So i take the hubbys meds that he no longer takes when i just can't deal with the pain anylonger. But they are not that strong so doesn't help much. Its sad that my best friend is icyhot and my heating pad. lol its almost like when im in that much pain i develop a temporary neuropathy cause i can't even feel the heating pad its not hot enough. But the other day i must of sat on the control and turned it on when i wasn't hurting and boy it does get really hot and im suprised i havent burnt myself. But heres hoping to better days for all of us.:)

[Family2011]

I love the heating bad. I keep mine in bed. I would be lost without that sucker. I over do it on the days I feel good also, and that obviously hurts me more than helps me but we have to do what we have to do. Take care of yourself and your babies, don't worry about the rest of it. People is what matters. I have not heard from disability yet. I filed a month and a half ago. Hopefully, I will get approved, but not likely going to happen since this is the first time.

[Chreey]

Yeah i got my denial also so have to wait on a court date now. The system is rediculous so many people can get that don't even need it. But the ones who do have to jump through hoops.

[Chreey]

Hey ladies im going to start a knew thread this one has got alot of posts.