Tyjoky, Good morning, Well you rattle when you walk I see! lol With 19 pills to swallow, I am thinking you are heavy in supplements? What else do you take?
The gabapentin is at top and the percocet is a good dose as well. Are you well hydrated? Has you Vitamin D been checked? Have you looked in the Members toolbox to the right in resources to see other tools we use?
I don't put most of my care in a pill. Though my meds are important to me. It is the other therapies that I do that actually make the difference. The hot shower, the heating pad , and my hydration is big. I think that made the biggest difference in how my muscles worked and felt for me.
What about the muscle relaxant class? You have neurogenic pain covered and a narcotic in use.....how about the muscle relaxant?
Share with me the 19 pills...what are you taking? Not to worry of a sudden death from your meds, but you are paying alot of money for 19 them....
(For education, sudden death is caused by a blockage in an artery of the heart that is high at the start of the vessel and this cuts off a lot of circulation to the muscle and therefore an arrhythmia of Ventricular Fibrillation occurs. The electrical system short circuits from lack of oxygen, from the vessel blockage. Another cause is electrical disease in the heart. It is not caused by the meds you mention. In rare cases a certain group of meds together can cause a slowing of the heart rate and set up the system to be at risk for an arrhythmia or sudden death)
Be safe, be better.
You can be a champion in this I know it. You have done well for 8 years now, this is a dark tunnel you are in right now...the light will be just down the road. We just need to get to a better place. So share the rest of the meds and supplements you take and see if there is a switch or change we can help you with. I can't say it enough though.
NO Aspartame in your life in sodas, diet soda and drink plenty of water...water ...water. I learned this the hard way and you would think with what I do know....I would have known something so simple!
I am up and so surprised at how it doesn't feel like the start of the New Year. We didn't do anything for the first time in our 35 year marriage. We were home and I cooked and we watched Twilight Zone and the NYC events....
DH was asleep off and on from 8:30 me from 10pm. We are both beat! He is still in bed and I am sitting here with you. I had to get up for meds. NO laying in bed thinking to return to sleep, our dragon breaths on me right away, so I have to get up!
Plans for this year is again: Organization!! and lose weight, be kinder to myself and try and put myself first in things. Hoping for a good year! Well you know, let me change that. I WILL MAKE IT A GOOD YEAR!!
Here is hoping your toolboxes are neat and easy to find fixes for the issues you are dealt.
That we get some answers this year to help us all be in a better place. That someone important in the world joins this mess and then ALL will take notice of the struggle this is each day for us.
I wish you all:
Patience when you are frustrated
a heating pad that is the right size and gets to just where you need it!
someone to hear you when you need to vent (always here)
Consistancy in your care of yourself (not easy)
Enough money to do what you need to do.
Warm sunlight on your faces to keep your spirits up.
Joy in your life that comes from even the littlest thing that you noticed. (be open)
the love of an animal
The meds in your toolbox be right on perfect to help.
And last: Again patience....with self and others who don't get us. Even with the docs and staff.
Sorry to read that you are under the weather again. It is so hard for some to stay above the water with infections. Ears can be tough like sinuses too. If the antibiotics weren't there long enough...it returns. Like seeding a garden. You lose symptoms and then a few week later it is back. As the last guy left started to multiply.
Steroids do increase risk of infection and delayed healings as they prevent your immune system from attacking an invader. I don't think though that spinal injections is enough for systemic effect. Rest and get to the doc for those tonsils. Viral throats can be even more painful than a bacterial one. With those lymph (tonsils are lymph nodes) nodes upset it is within the tract to bother the ears. Fluid reaction as a build up alone can be painful (no room in the inner ear for much!)
Good luck. Hope Motrin and a decongestant are in your arsenal!! Hugs from me, Nancy BView Thread
Good morning Tyjoky, It sounds like you have had some run in your life with FM. I have not had it as hard. I am so glad you found this site and USED it and shared your feelings. That is the best thing it can offer is reaching out and having someone say"man I get that!".
I also have he ulna nerve involvement and I am at the point of figuring what I want to do about it? The nerves have been inflamed and entrapped a long time. I have little strength to the hands and the burning fingers can really be awful. What did you do with yours? Did you have the surgery?
I had brought myself to the door of suicide, years ago.....actually it was a little over 5 years ago. I thought the kids are grown and my DH would have my pensions and this is too much to carry everyday. But DH brought me to a physiatrist who changed my physiology quite a bit and I was better....not at the bottom of the barrel. Walking on glass each morning the feet hurt so much and so stiff and feeling like I needed an oiling! I was the TIN MAN !
God sent me my first granddaughter ON MY BIRTHDAY....and at the hospital I was told " This is a message for you, God doesn't make mistakes...this was on purpose" Man if THEY only knew.
After eating green (antioxidants) hydrating with water...getting sweet nlow and splenda out of my life and diet soda. Taking Udo's oil for the Omega's (guess that was the lube!) It took 3 months of consistant behaviour and things were better. Much better. I couldn't afford to still see him so I just took all he taught me and ran with it.
Gosh this is so hard. We are all out of wack just a little different from eachother. But I truly believe the body is resilient and able to heal itself. With all the torns* you have had, do you use massage as a tool for help?
I always speak of FM and Chronic Myofascial Pain, a survivial manual by Dr Devin Starlanyl (on amazon). It is a priceless self help book for anyone. You sound like such a fighter and a fighter can get some back from this dragon that takes so much from us.
Don't lose spirit. Don't lose the hutzpa* (a great yiddish word...balls) to fight!! 42 tablets of anything whether supplements or pain meds with pressure meds....OMG. You must rattle when you walk. Med time is like a meal for you!! As a nurse I have seen some amazing med lists and I also have seen that some are redundant or not a good idea with others. POLYPHARMACY can be a problem in itself. Make sure you are using one pharmacy and let the pharmacist know all that you are taking. It is amazing how meds interact and you you can be hurting and not helping. Or wasting money.
Important for us is B complex and Magnesium, Malic acid, many on Vit D and CoQ10 for the cells function Dr Pelligrino spoke of the standard list he liked for patients. While he was here it was a priceless time. Search up to the right in discussion for his postings. There is no standard for us, one by one. But there is a need for the body at any point in this mess to be sure you have it right.
I wish you so much luck in getting to a better place. With all that torn stuff maybe the Ultrasound therapies may help soften and break up scars you have internally that hold your range of motion back and create stiffness and pain. OMG..I am rambling.
This could be your year to get to a better place. Nothing is easy for us, you need to want it for sure. Look into the book I talked about it is a favorite of mine. You can do this! You can get to a better place, I know you can because I did it. And I was sleeping in a recliner and unable to cook or do laundry. I had to change my job and reinvent myself. I just said I am not taking off these boxing gloves til I get a diagnosis and I fix this!!
Over 15 years now and in the last years I am dancing with this dragon....I still have pain and he drops me to my knees if I do too much, but I have regained alot of me back. I couldn't comb my hair! I had to bring my head down to my arm (close to the body) to fix it!
It's raining. I swear...the weather had it being south of NYC and I was in the clear! Tom is trying to move today and the temp is right but RAIN on everything? CRAP.
I did some assessing of the condo while I was with Emily yesterday, a Mom's work is never done. I have 3 weeks to get it in shape for a tennant. I will have to take time off and get a helper. By mistake last year Tom locked the baby in the bedroom and he broke the jam and door to get in. BIG project.....I have tiling to fix and I am almost sure the living room rug needs to be replaced. The kitchen from this CHEF is a mess with so much. I have to get my cleaning staff to help me. I'll cut a deal with them. OMG...
Overall though the walls are OK and I hope the colors are OK with her. I met her by phone last night and she seems so nice. Just the projects never end......
I am looking at the wonderland here and jealous of you Cory...it takes days to dismantle this and I am running on empty. Less can't be more though at my house. It is over 20 years of this magic. Need to call the man to get the tubs and get moving on the new phase of Christmas.
Well, here is hoping I can start a better eating habit for myself. I am a mess. Sleeping well though with so many dreams, feel like I am catching up on something!
I have a wake to attend tonight and I am in the toss of helping Tom at the house or going to the wake . I think I help Tom alot and others can do that heavy work..I have alot ahead with the condo.....so I am tending to go to the funeral.
My boss (CEO) his Dad passed , all will be there and as a manager it is political as well. I really feel for him, he is a great son who gave his dad so much. Hard for the son to say goodbye to the Dad and the daughter to the Mom, right? I will go to the funeral.....
OK I must get the laundry done and make sense of the hiding spots where I threw everything for the holiday!! (Don't tell me you guys don't do that!) Then you can't find anything!
I have a New Year of WORK waiting for me. This is good...WORK will make me move and if I eat well I will drop a few pounds! see the positive here!!
There are always meds and tools to put me back together, but I must downsize. Holy Moly I must!
Spent the day yesterday getting ready for dinner guests last night. At 10am I was done and sat and watched "The Greatest Story Ever Told. It went on for the whole day. Great break for my body and lift for my spirit. "Love one another as I have loved you" Good stuff I tell ya!
I had a quiet dinner with SIL's and it finished off the fish and left overs, that was the plan....waste nothing.
So I feel not bad today, I am so heavy though....OMG the New Year and it's resolution can't come fast enough. In fact I may not wait. I may make MONDAY the start of a better me. Crap I am having trouble breathing I am so heavy. Just letting the demons in me nosh and nosh....plus it is all available in the house and office!! Got to do this....always an increase to pain when I start and work at this, but I cannot stay at this number..(these numbers) lol
Today I go help with Emily so they can maybe move to the house on Sunday. TODAY is the day to move though as Mimi said, unusual weather...going to reach 60 they say. But they also have the New Years Parties to cater so they are soooo buy still. Tom actually got a job from Nordstroms to do their holiday baskets this week 36 of them. That is no joke to do a job for them. He catered during the summer something for them and they took a liking to him. . N I C E.
Lets hope our winter we share this year stays somewhat warm and safe for all of us. That the price of oil stays low and gas so we have a bit more money in our pockets.....
Thank you all for posting on the magic you had. It can really be just the smallest thing that touches you so deeply.
I got this card during the last week that reminds me of when I was young and it has teal in the glitter around the house. It is Kinkade looking (but not) and IT moved me. I could look at it all day. I made it the center of the fridge between all the photo cards I get. Everyone loves to see how people have grown and all asked "who is this dog??" (Penny sent me her beloved and I put it up too) Anyway, the card and the elderly woman who sent are dear to me and I will treasure this card.
Cory, Love that story of the dogs, warms the heart. I wish we had LIKE for the posts like FB. I just think we would have more hugs going on here. Or maybe a SORRY button! Since alot of our posts are issues and concerns. Maybe someday?
OK, off to take a shower and stretch. Hoping not to overdress with such a warm day 60* ahead....all the light stuff is packed away! PACE the day and continue to try a make a day. Make a memory. Look for colors in your world (increases seratonin) and be among people and laughter...make yourself laugh.....
For New Years for the first time we have NO party this year SO..stay home and eat lobster (we never have) and I am setting up the DVD for the Carol Burnett Seasons...(gave it to DH this Christmas! ) We will laugh in the New year! I also own the Johnny Carson DVD's...they are a hoot also to bring you back, but you cannot help but laugh. GREAT MEDICINE......
My body is in rest mode. Thank God I took today off. Such joy to see all the kids with the paper flying and (the mess left behind). While I was cooking on the Eve I got a call 4 more for dinner. YIKES...I had no more plates and the areas to push them into were now so tight. BUT it worked out OK and the joy to have them was worth the tension.
The matchbox cars were perfect for John Vito and the spirograph over the moon for Sophia. My girls loved the Elsa and Anna dolls that were >12 inches high! My surprises for the other guests were a hit and the dinner went off without a hitch.
Each year I give out flashlights ("so you can always find your way home") and I gave a few extra out this year!
Yesterday was my children here and just now I realised that we didn't give the one who bought the house his house gift! IT is still in the garage! CRAP, I asked DH to get it and the moments just passed and he forgot!
Well little Emily took her shopping cart and was all over the house, **crashing into everything and everyone! So funny and to see her dance and giggle...great day.
Madelyn was on my lap most of the time. . They are so special Santa Nana had little to give by afternoon so all the mess is still looking at me now! I just need a new battery....
I have DH's sisters tonight for left overs. The flounder was so fresh in the tub I could smell the OCEAN. I swear! There is nothing better than fresh. Right from the NY Market at the seaport when it comes in. Now I still have about 12 fillets to get eaten soon.....I stuffed them with crab (sealegs) and onions with bread crumbs. OMG good stuff.
So needing to find my mojo to get the house picked up one more time! Tomorrow I will just be a veggie on the couch and rest.
I am hopeful there was love and joy around each and everyone of you. That the magic of Christmas came into your hearts and homes for this night and stays for a while.
Rest and regroup. It is 29* now here in NY, we were 60* for the holiday...crazy stuff. Stay warm....stay hydrated....be safe. Nancy BView Thread
Its learning about yourself and what are your triggers
Its learning the tools for relief that work for you
Its taking it day by day
Its finding a sense of humor when you think you cant laugh. But you do....and it helps.
It finding distraction after your meds are in (40minutes) and having that lower the sense of pain a bit more.
Its understanding that this is forever and it can be better but YOU have to work at it, no one else knows what you are dealing with. We can help but it is a lonely disease where you talk to yourself alot.
Its also knowing we are NEVER painfree but in a better place to have a life.
Can you be a CHAMPION? Yes, everyone can train this dragon disease we fight. It is being consistant and putting you first on the list, this you need to do. Your body is speaking out to you. Most here are the doers, doers for everyone else.....you first now.
The common meds we take are a muscle relaxant, a pain med and something to alter the brain chemistry (seratonin inhibitors) no we are not depressed, maybe low from pain but not depressed. Living with chronic pain changes your chemistry and we need to get it reset.
I use SOMA as my relaxant as it is a 2 for 1 med. It is milltown (a sedative) before it is a muscle relaxant and that help to settle me down. It is 15 years of this med and I take it 3 times a day by this time, starting only at night to sleep better. Tramadol for pain (now controlled by the goverment but is non narcotic) and I take a small savella tablet 12.5mg to help with chemistry. Also VitD was major in my care levels should be followed as this is a hormone more than a vitamin and it affects many body functions. So many of us are low. Magnesium for the muscles and CoQ10 for the same.
In this med box is a huge dose of distraction after meds are swallowed. I struggle at times to get out and to work but then the distraction at work gives me the day full of activity. It is the strongest med I take and without side effects!
I wish you luck as you move around this site and learn of this mess we are all in. To the right in resources is the Memebrs Toolbox, please look in it. Up to the right in discussions put Dr Pelligrino in the search box and look at all the great hugs he gave us while here.
This mess is doable and it took me 10 years to dance with our dragon so nothing with this is fast. It is trial and error and then time to see if it works adn makes a difference.
All my best with your path. Stay here and ask questions, lean in for a hug and please scream here. Our families don't get it and don't want to hear it!!