Just had some things to say. My Sunday is on Saturday. (does that make sense)?
Challenging times for me, but I will figure it out. The race in life has sped up and I have to try and keep pace with it. I want this to work so i have to get a thinking cap on. Pretty much still using my brain not my body at work so I am better. Just my stinking attitude of being told to work 5 days....and lost my day off. Breaking my heart.
It is attitude I know as i have been doing it for months, crap so stupid i get passed it. I will keep working on it.
Raining here and 45*, yuck but better then the teens......
OK, off to start the day. Amazing when I read levels of 6 on Vitamin D. Crap I was 12 and how can they not check this all the time. LOVE your mantra!!
I have read the whole post here again and I think this started as a complaint about a post with a comment........but it has taken a life of it's own now and so many wonderful things are said here.
When we first get the diagnosis of this there is elation of a label....finally I know what is going on. The reality of forever then hits you and what do i do, what will help.
The road that follows is tough. trial and error and bad days and lost sleep. trying to still be ourselves and then getting the family closest to us to understand......it goes on.
This board is so great to dump on, ask questions of anyone that might have an idea or plan that could help. It's open 24/7 for assistance. Sometimes someone just lurking may see a big need in someone and I have seen posts that ran all night long between two people. It is priceless.
I too have planned my exit and then put it to the side. If I had left I would never have met my Grandchildren. When my first was born, it was ON my Birthday.....at the hospital they said.."On Nana this is something special...GOD is telling you something" They had no idea what it was....."don't take your life Nan, it is precious and is needed in the future"
The pain at the beginning of this was overwhelming I so needed a tune up and the right meds and a load of education. All this came after the diagnosis...then came the long and at times fruitless trial and error period. I have swallowed so much stuff and tried anything to see if there was relief.
I even wore a huge magnet H U G E..in the middle of my back to see if magnet therapy might be something for me. You can go crazy.
WE ARE THE STRONGEST PEOPLE I KNOW............
Can I say that again: WE ARE THE STRONGEST PEOPLE I KNOW !! We are inventive, cautious, move when your body tells you to sit.....smile when you want to cry....
Thank God we have this site to be in. It opened so much for me as the human by "make up " doesn't want to know. When someone say "Hey How Are You ???" They really don't want to know........it is just a greeting. LOL
Here, we want to know. The good, the bad, and the ugly.....
OK. Look at all the great conversation that happened here. I love a good post for all to think about and by the way I still haven't seen the post this is about. I don't need to. The chatter here is all I needed to see what the feelings were all about.
My hugs out to all of you. I really mean them too. This is tough stuff and we are all different in the fight. The pain I had once to get into the bathroom with the glasslike feeling in my feet is still fresh in my memory. But to be human...once pain is better it is really hard to remember exactly how that pain was.
I used to write the descriptions when I got up so i could tell the doctor because after meds I was different and by 10am I was in a totally different place. A description was near impossible. So getting it on paper when I was in it, helped me to explain the mess better. It worked well for me.
My journal helped me to see my improvements and my patterns.
Keep up the good chatter and post often guys, we need this...
In reading your post I want you to rule out something.
I would love for you to ask about a sleep study. There are people of young to old age, big and small that have problems with what is called sleep apnea.
You have periods where you don't breathe right in the night and your oxygen levels drop. Your sleep is inefficient and non restorative. You fall asleep at your desk, in the car....can't concentrate. Your body is exhausted before the day even begins.
The answer is a CPAP machine...(oxygen pushed into the system with a mask) no meds. In fact our meds can make it worse. Please ask to have that done. Insurance will cover it with the chart info you have presented.
I will hope that is the answer you need. And you will be back in life as you were. Don't ask how or why this happens to people as we don't know it is neurological and in the obese it is a physical obstruction as well. But the fix is simple.
BAD NIGHT....probably a mix of everything. I think though I am with you CORY...it started raining last night and with it came a mess of a body. At 2am I was up, mind going but body was so mad at me. I got the heating pad and to the recliner I went......fell asleep like that for the next 3-4 hours. Better now but I must respect myself.
I so many times wish I lived in Florida with my sister where the weather on the west coast is so much better. Not that this would disappear but it would be a bit more tolerable. LIFE is here in NY though and my job is here......maybe someday.
Well, not much happening just need to get a meal on the Sunday table and get the ironing done. Staying SMALL** today. Listening to the body. A party and then baking and putting out the Christmas stuff yesterday did me in. D O N E.
One of the joys I can say in this is I know my tools and I know my body. Listening to it all is pr i c e l e s s.....(only >15 years) Took me a while to stop fighting so much.
Have a good day all.......hope it isn't raining on you!
Prednisone pills are NOT a treatment for FM. We are not inflamatory. It is a pain sensory thing. I am Chronic Myofascial Pain and have trigger points. Which puts me in the TrP injection arm for help.
Giving you prednisone is probably going to make you feel better as steroids give you a "sense of well being" with all the chemistry changes it makes. So it is not a valid try orally to see if it helps you. Everyone can feel better on steroids......
You can get grandios ideas of self too on steroids......like "let me clean the whole house in one day and pull down the curtains and wash them...maybe paint that wall ....Ha LOL. It can be bad....I have seen it! So I don't know if that is his plan to give you oral steroids. I agree it is not a great move for you and I am concerned as well.
Under another post I spoke of trigger point injections and the use of steroids in that. It wasn't clear that it was a pill or an injection. Steroids do alot to your body. you hold fluid...increases free sugars in the bloodstream and alters the calcium reabsorption it can take your sleep away as your mind wants to keep going and then you get and increased appetite.
IT IS A BAD GUY...but if a MUST is in there. The you MUST go with it. Do you have markers of inflamation with this doctor that he wants to do this? 5 weeks will also shut down your adrenals ( they stop producing there own steroid as it is in your system) and there is a weaning off process that has to be done. (to get them back up and running)
We use steroids in the pulmonary patients all the time. YOU NEED TO BREATHE. see there is risk and benefit for the patient. Maybe asking for more information?
I always suggest to patients here to get the book FM and Chronic Myofascial Pain, by Dr Devin Starlanyl. It is so good to understand things and then there are now 2 other books to look at. But that first " survival manual " is priceless to me!! Amazon.com 19.99. Money well spent.
Sorry you are dealing with this too. I use trigger point injections to survive the mess we get in. I go every 2 weeks.
I have seen some that do small short visits and feel better and return when in trouble again. I have been consistant as I work so much and it was because I work they continued to fight for me.
At times I have had steroids in the syringe but mostly Lidocaine was used (mostly to help with the soreness of after) you can get a dry needle (like accupuncture) and still get a response from the muscle.
If it is trigger point injections you get, I will say after 10 years of them, they are not for the faint of heart. They hurt for a day and on the 3rd day I am so much better. At times I feel like I am carrying a turtle shell on my back and the neck is locked and if I turn the headache will come. These shots release all that and my body now has a conditioning to respond when stuck and I really do well.
The first few rounds of injections were tough. I really didn't think I would continue but the science end of it had me in.....I knew it would be my avenue in the end.
Your physician may look to 5 rounds of injections to look for benefit. Some insurances too may delegate that number and reassess after for what is still an issue.
I wish you luck. In the beginning I would go home and sleep to rest the muscles so they could reset.....then I went out to the store to distract myself like months later and now I go back to work......so you see it gets better and so did I.
The headaches are rare now, the numb hands almost absent. The stiff range of motion problems so much better, but I don't hold the release for longer than 2 weeks with the movement I do. So I go every 2 weeks for injections. I receive 20 to as much as 60 in the beginning. ALOT of work needed to be done. I have a new doctor and she is not like the first. She wants me to tell her where I need help. The first one KNEW where I needed help. Also she just shot me.....talking the whole time.
I wish you luck, I wish that it helps you like it did me. Give it a chance to work.....it is well worth it in the end! !
Tired this a.m. I went to my first Bar Mitzvah last night....I NEVER do somethng after work on a Friday. I have learned it is a trigger. Well, I was asked so many times and got a driver there....so I went. I am glad I did, it was a wonderful ceremony and party. BUT I blew it. I changed bags and didn't put my meds in there*** OMG what was I thinking. And I ran out of gas and sat...couldn't even walk to the bathroom well. My legs were so upset.
Then driving home I right away took my pills in the car, but the muscle began..one by one tightening and bothering me. I leaned into the head rest to help unload the neck, but I wished for a hot pak on it. If I had heated seats it may have helped...
Today I must be careful and wait to see the left overs of crossing that line. You see we talk about fear to step out of the box and what will happen....Paying for crossing the line....
I am not too bad as I sit here so it might be a turn around day before I know. Glad I was present for something important like that for my friend. I brought the dinner home as IT WAS TOO MUCH amazing food. They went ALL OUT...
Wish I hadn't sealed my envelope as I would have up'd the gift for sure.
OK, Other news.....I don't see that Mimi has the new GC. Mine is getting Baptized in 3 weeks and the prep is to begin soon. I like making the cookie trays for each table. So I took a week off after Thanksgiving to decorate for the holiday and to bake my hands off with different special cookies.
I am still finding the mental part of working 5 days a week painful.......(yes I have been doing it for months on my own even 6 days) but now being told....crap, I have an attitude in me.
Back to last night....I just have to share the JOY I felt sliding onto the memory foam mattress. If counted blessings it would be 2nd behind my meds.....
OK, I am off to start the day. A HOT shower is calling my muscles..I can hear it......nancy....nancy.......nancy.....
Hope your day turns around for you and a low pain day is waiting. Get in the sun (like a flower), Water yourself...and be sure to have your feet in good soil. (a positive place).
GREAT thought the TENS unit! It is not just a distraction...it competes against the signals in the nerves and numbs the area. (I guess you can say it confuses the nerves function and the return to the brain of "pain here" is no longer able to be sent.)
Great idea. I got mine from the Chiropractor and they set it up. BUT I got the pads from the internet and saw you can pick one up yourself.
Good luck with this, we all want you better.......Nancy BView Thread
I also don't know the post you are spaeking of. But I will sound like Caprice who used to be here.
This is an open forum that many and all can come to. We have had people who where the spouse of an FMer asking for guidance to help, we have had people looking to sell things they say are cures.....(ha) and we have had the one's who are fresh and insensitive. I can remember one that started such a fight on here.....it was pulled but the feeling remaind for a while.
Sometimes I think too that wroting in pain or in a med can alter the conversation too.
If it looks offensive "skip it" it may not be from a person walking this path. I feel I am pretty high functioning. I have about an 8 hours window of good life and then I fall back into the shell this has created. Good days and bad. I talk positive here as I am hopeful it gives hope to someone.
The years I am here have brought me to such a better place in my head but as you said it is depressing. I was told over and over YOU ARE DPRESSED. That is crap...I am LOW because I am in PAIN....It was so hard to get that in the heads of those around me.
I am sorry something here offended you. The board is definetly a place to rant and cry....share and lean in...dump it all here. Our families don't want to hear it. I talked about it so much in the beginning as I was trying to figure it all out......putting it here and talking to the crowd in those years I guess saved my marriage! I was on maybe 3 times a day asking questions and sharing.
Don't let anyone steal your thunder....this is a very important place for the people dealing with this disease. Stay and post. It was only one in hundreds......so many look and don't post. At times I do this too.
Hope you can get to a better place. Check with the Persons with disabilities area. There may be help there.
So many times I wish I was a social worker. They have all this knowledge for referrals. What department and resource helps for that and this issue. Oh well. Cardiovascular is what I have.