Fibromyalgia update

[Chreey]

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.

[Chreey]

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

[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.

[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]

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]

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]

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]

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]

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]

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]

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]

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]

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 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]

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]

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!!!

[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.

[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]

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

[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

[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 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.

[Family2011]

Do you know what they are caused from?

[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!

[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!