Wrote a long post yesterday and lost it...unable to type it over.
Sorry to hear of the GS having issue again. I just cringe when kids are ill. It's not fair, someone old should carry the wear and tear of life, not children. They should just be playing and becoming*...
Busy with the condo yesterday despite the 8" of snow we got! I had to wait for the plow to dig me out, but my coat was on and running right after.
She signed the lease and I have 2 things more to finish fixing and done.....she is IN as of today. Now i have SUPERBOWL on the roster for projects and then I am in a RESTFUL state until spring!
I also am hopeful to win a box in the Superbowl pools. I can use the $$. New insurance company pools all the policies together and hits you hard! How are people to find that cash right away. MetLife had it in separate bills. OMG...and taxes are due in 4 weeks again as well. Always looking for $$$ here in NY.
Truly jumping to Florida in my golden years!
Had a great Friday night with the girls, but they knocked me out. Friday is not a good day for me after work.....but the joy of their silliness is a good medicine.
I pray for good news for the little guy. He must have issue with both kidneys to have a finding? So many have a kidney not up to speed and it is not found until some incidental test is done and they see it is too small or backed up to the renal pelvis. But cellular function will be hidden by the good kidney so bloods don't show that one is the predominant.
My heart goes out for you. Our little angels shouldn't have fights of their own, not yet at least. Hugs from me, Nancy BView Thread
Google the guafesin, it has a whole diet that needs to go with it for us. A pain to do and I have not seen benefit among the patients here. Interesting that your doc knew of it, sad he didn't give you the whole plan though with the diet.
Amytriptyline is the oldest med used for this. and it is tried and true if it helps. Give it time ( 2 months )and re-evaluate.
Most here take an antidepressant to raise our seratonin (feel good chemical) and a muscle relaxant as we are stiff and in pain and need help with a full nights sleep. Also tramadol is used for pain (most common) there are those on many other meds., meds to the left or right of this but thats a start. I used only motrin for a long time but then I was in need for major help. I do well now and have learned through fighting with this dragon of ours, how to just dance with him a bit.
Remember to hydrate well with water to help your muscles rid the endproducts of metabolism. This was big with me, I never realized I was on the dehydrated side. It takes 60 days to change your chemistry and that is true of rehydration. Your kidneys will contiue to drop excess fluid (has to do with salt water ratios) and they will keep a little and the next day a little more and finally you're where you belong.....
WOW the accupuncture post is long huh? Well I have to say that I said similar in my post with my Trigger Point injections from the neurologist.
The saying goes that ALL FM patients have trigger points but not all Trigger Point Patients have FM.
That is me, I don't have FM wiith the brain fog and overall fatigue. I do have fatigue, it is when a trigger point has a large muscle and this congestion takes alot of energy to maintain, so I fatigue easy.
I saw an accupuncturist and he said to stay with my trigger point injections. I have. BUT....there is alot to Chinese medicine and if you are in a town that has the availability you should go for it. I had a change in 2 sessions of injections.
Though TrP injections are more uncomfortable in the beginning while the body was adjusting I knew it was the right move.
She also spoke of diet and easy foods are prevalent with people in pain and not wanting to cook. She was right, it is so important to offer your body healthy choices and that is what you should have in the house.
All the chemicals in processed foods are screwing us up. I live a green antioxidant diet. I will say to I can be at a "2" in pain level as well, with all I do. It is during the wellness window I have carved out. Man this takes time and perseverance*.
The physiatrist said it takes 60 days to change your body chemistry. BUT if you cheat or mess up in any way, you are back to day one. So perseverance is no joke.
I was so close to suicide that I didn't cheat or faulter and I did get so much better. In the morning under the sheets when the muscle are warm, that is when my morning stretch begins. Well I couldn't for a long time get a response, just terrible pain in the morning. 90 y/o then after 60 days wit good hydration too, I was able to stretch and the muscles listened, then walking on my feet was so much better. It is still a day to day disease, not knowing what will be ahead. BUT..I have learned alot about ME.
Good luck with this, try the accupuncture if you can, if neuro is involved ask about Trigger point injections. Look into Dr Travelle and Simmons work. This was President Kennedy's doctor in the White House. She is the Mother of trigger point injections and she gave them to the president to keep him moving!!
In the book FM and Chronic Myofascial Pain, a survival manual Dr Devin Starlanyl now has a book devoted to trigger point injections. Accupuncture is not as invasive or painful, so if you have that option...try it. You can't lose anything but this pain.
Remember too, we are all different and "out" chemically different than another, that is what makes us so hard to treat. I wish you all the best in this road to recovery, recovery of MOST...sadly not all. We are dysfunctional always now. .
Chiropractic was all I used in the beginning and Motrin, but it wasn't enough after a while. I saw a physiatrist that put me on a "GREEN IS MEAN" antioxidant diet and I used a supplement called GREEN VIBRANCE. I have to say, he was momentous in my tune up.
I still eat green most of the time.
Green being all green vegetables. They are loaded with antioxidants and he told me most of my issues were related to cellular radicals over time and the cells in my body needed cleansing. Well with water only and plenty of it and the green diet I regained the ability to finally stretch out my muscles and the pain in the feet got so much better, my mind was clearer and it was a win win.
I just couldn't keep paying out of pocket to see him $$$. So I slid back a bit.
So maybe look into GREEN VIBRANCE in the health food store. We called it pond scum and it was, but you get used to drinking it. I bought the capsule but they weren't the same. At one point I asked if I could take it 2 times a day as i was feeling the difference.
Lucky for me, that I have done the right things for me and my issues and finally went from not working and near suicide and now I have a wellness window of 8-10 hours, work a full day (crash after) but I am back in the world. My main therapy is trigger point injections (every 2 weeks)
My hopes for you is to be better tuned up. Watch caffiene as it dehydrates you and a glass of water is to replace any caffienated drink. No diet sodas if you can, that Monsanto is trying to kill us all....Aspartame is a neuro irritant and is cheap..that is why it is in sodas. I would rather go back to saccharin.
Wish you luck in so many ways. Maybe look into "FM and Chronic Myofascial Pain" a survival manual by Dr Devin Starlanyl. Lots of hints and help in that second edition book.
I was unable to tolerate Gabapentin even at that 100mg start dose. Too drowsy and loopy. BUT they say if you continue through it gets better and the relief is there.
I work and loopy doesn't fit. . Replacing Savella is a bit tricky as it is the only med on the market like it. Any of the SSRI's may work or Cymbalta which also is an SNRI. The thing about savella is it increases the N (norepinephrine) 3 times that of seratonin (your feel good chemical). Norepinephrine gives you that fight and flight energy and strength and pain relief.
The basic start is Elavil and then you are in trial and error to get the brain chemistry in a place that fits for you. I only need 12.5 mg of savella once a day to be in a good place. Lucky right.I caught a break in brain chemistry. Pain is a bummer though, each day is an artful bob and weave in what you do or when to rest and when to repeat meds.
We need to take it a day at a time and the spoon theory at (www.butyoudontlooksick.com) is excellent to describe the day!
I hope this passes quick for you, we have learned though that a med needs to be check out over weeks to see if it is a fit. I wish you well in this.
This behind finding the right doc are the big hurdles we face.
Gosh it hurts to read this letter. This disease is so invasive in our lives and the early process of changing meds and side effects and heightened pain is just awful. I am so sorry this is where you are at.
I am also so glad to read you will be seeing a counselor and she has a connection to a good neurologist. I use a neurologist for my path and it has been a great fit. I so hope they get you to a better place.
Please look in the toolbox to the right in resources to see if there are thing you can be doing for yourself to help your body. Journaling the days was my best move early on when I was in transition. It helped me see what I did to start more pain or what I found was helping the pain. I think too it gave me some control....my journal was my story, and writing it down got it out of me. When I look back now, it was quite a struggle. You need to be determined to win and do your part because the answers are not in a pill, it is multifaceted to assist the body to function. Hydration, supplements and good food, it all adds up.
Geez I hope this gets better soon for you. I used to feel like a broken bird, that I would never fly again. But that wasn't so, determination and having my dang boxing gloves on each day is what got me through.
I have 2 sons and neither was of help, in fact they made fun of me in the beginning. I would stand in the shower for relief and just cry (so they couldn't hear me) I only got a break once I took my DH to the neurologist with me and he saw the triger point injections I receive. He was amazed....he saw all the spots that hurt and are dysfunctional. And that day he became my champion to defend me to the family.
No one gets this, hell we don't get it at times. I hope with all my might that building your champion team with the counselor will do it for you.
Morning on Monday! Geez in a hot spell here it says 36* out already! Up early to meet the rug people. . Glad to get it fast not so glad it is so early on a day I was given off . Can't have everything.
Mimi, how about pretending you are camping? I use that mind set when we are out of power? Well maybe if everything else is OK...it won't work. We are a spoiled group, our ancestors would shake their heads. They didn't even have water in the house! Remember when I cut wood with my BIL and I hauled it to the bottom of the property and it killed me.....OMG I wouldn't survive.
I think we had a plumber do all of it with the one at the condo...why not get a plumber they know the electrical to it as well? So sorry Mimi for this. No hot water in the winter..tough stuff.
The night with the GC went great, the next day always gets hairy and I have little energy to be inventive, but the tent was put up. They loved the "kinetic sand" (I loved it too Maddy knocked over the little table twice and it CLEANS UP great!! As a last resort I did a bubble bath to break the day. That was a mood breaker for sure, but it was taxing on the arms to get them up and out and dry. WHEW...glad there's peace now.
I have some mess here too. They are so good but they are adventurous here and I let them. If I saw them all the time I would make more rules, but for now they rule the roost. In spring we can be outside and that is a great thing!
Back to the dragon we share....I am in trouble with the ulna nerve. So much it hurts to blow my nose or wash my face. Any pressure inward will result in shocks or a burning pain from the elbow down. If I examine the arm the nerve is sensitive and hurts all they way to the shoulder. This telling me entrapement is high. OMG...I don't want to have this surgery, I need to really rest the arms. NO PROJECTS...... HA! I am in fair condition otherwise. The neck and shoulders and back to toes are holding . What a package!! .
Well, Mimi I hope today they fix it* That today you again feel the warmth of water coming from the faucet....oh yes we are spoiled.......Hugs from me. Nancy BView Thread
Bette here is on Fentanyl. I caution on going there as it is anesthesia.....it crosses the blood brain barrier quicky and there is nothing else after that. That is the end of the pain road, so if tolerance occurs you are at a loss.
Have you done all the tools in the toolbox? That means not picking one up and in a week saying " that didn't work" and dropping it.
I was in such a bad place years ago and the change happened with water hydration and a green is mean diet. Heat and movement in stretching. PT is a killer for us. In readings i have learned that trigger point patients don't all have FM....but ALL FM patients have trigger points!
TrP's are knots in the muscles that keep them from relaxing completely and this eats your energy system up and creates early fatigue. They are painful as heck to touch or lean on even sitting in a chair.
I caution you on the Fentanyl and ask you to look in the toolbox as well and looking into the book FM and Chronic Myofascial Pain by Dr Devin Starlanyl. I got mine on Amazon.com It is priceless to help with the issues at hand.
Our answers are not in a pill. Though we need them to assist in the fight. This dragon is no joke, but you need to attack him in a multifaceted way.
No sweeteners/chemicals in your body, eat natural and not processed with all those chemicals. Your cells are struggling right now and you need pure and good hydration for the muscles to function.
I was close to suicide in this mess, the thought of having 9-10 pain each day I wake and the feeling like I was 90 y/o when I woke, was overwhelming.
I was brought to a physiatrist by my husband so I didn't leave this planet and he gave me tools to be better. Hydration and no more soda was a biggy. I really had no idea how I was not helping my body to cleanse itself and rid the byproducts of muscle function out of my body. I didn't take into consideration that i needed to give my muscles and cells the antioxidants to rid them of destructive radicals that eating poorly had created in me.
In 60 days I was so much better. Even not walking on feet that felt like glass was under them. I still change my shoes to a different pair each day to use different muscles in the legs.
Oh I wish I could be near you to get you to a better place, i remember that place so well. I fear for you with going to the Patch. What meds are you taking now? What are the tools you are using to be better now? Maybe we can get you a bit better. Hope to hear back. I will be on again in the morning.
No judgement here, just fear for you and all my comments are being said 'in love' to say I care and if my path can make your path better I am hopeful. Our chemistries are off from the norm just a little different than another, this is why it is so hard for the docs to treat us. BUT physiology is constant. So think about what I said.
It is not easy as you say at times. But i can be done, to flip that switch and and the more you do it...it is liberating!
I will take a DAY OFF and say leave it and then like today, the BIG girl pants go on and I look at all and know i will be in a better place when it is all done. I have a full day today with the GC tonight for more fun (pizza making , baking cookies and I am sure costume role playing)
Life needs to be full, not full of crap but full of projects and activity that we enjoy in the end. Pacing through like troopers. Hoping for the right mix of meds and movement to assist with it all.
Welcome to the fmily. Sad when we open our arms to another who needs support or a shoulder to lean in on.
What a good home you found though. I was unable quickly to look up your syndrome, can you tell me more? Anyone living in chronic pain is going to change in their brain chemistry and it takes alot of energy from you,so fatigue is common.
I have been here on the board over 12 years and not well for over 15 years. I joined when i met my physician CHAMPION who cares for me and told me"You need to find a support group"man she was so right! The charecters here I met are life long friends. Pain is a bond sadly shared by all of us misunderstood people...
Becareful with the polypharmacy and multiple doctor game that can happen. I saw 9 MD's but I am a nurse and kept all in the loop before I found my fit and I have 2 MD's, my Internist and the Neurologist.
One thing that I fought, was to help my brain chemistry and take a seratonin elevator. Like elavil, Cymbalta or for me it is Savella. But I did need it as chronic pain changes the chemistry and you need to fight back. .
It is sad. I guess you too have become educated in things you never thought you needed to know. Mimi here has mantra's of P A C E and Pace some more! lol it is true, and we direct people to the www.butyoudontlooksick.com site to read the "spoon theory" It is great to put life in perspective.
I will offer that a survival manual called "FM and CHRONIC MYOFASCIAL PAIN" by Dr Devin Starlanyl is a wonderful resource to learn about your body and tools to help. To the right in resources is the Members toolbox in there you will find pages of posts from all the members here and the things they do to be better so much sharing has happened. UP tot he right in discussions place Dr Pelligrino in the box and see all the wonderful help we received from him while he was here.
So, tell us more about you. What do you do to feel better and distract yourself from some of this. Being busy (even if just the mind) can be an assist. NO ONE gets living in pain, it is not seen by anyone. So no one can understand but us, who walk that path with you.
Welcome to our home. Post often and share the efforts you make, the setbacks that have happened and where we can maybe help you.
My first tool shared to me here was my memory foam topper. I bought a 3" to start and have a 6" one now. Without it I am sleeping in a recliner (my second home). The gang here brought me through some tough times in my path. I have now tuned up to almost a 10 hour wellness window. I try and steal an active day and set up projects always to aim for, so distraction is the strongest med i take. A muscle relaxant, a pain med (tramadol) and savella are my Rx's with VitD MG and CoQ10 and B Complex fill the rest of the box.
Not knowing your syndrome and your meds I can only be hopeful that you are on similar classes and supplements. The other tool and perhaps that which got me an ability to move better was hydration. Water only and plenty of it. Over time like 2-3 months I was in such a better place for function. It takes time to rehydrate the body as the kidneys have a job to do and you dump so much and hold just a little more of what you take in.
I paid alot of money to learn that GREEN IS MEAN... a diet full of greens is full of antioxidants and will help to repair you. It was a turning point for me.
Ok, I am blabbign on and on. I wish you well and know you will benefit from the site in so many ways. Best to not just be a lurker, be a poster and share the day, the issues or a question that you just can't figure out a tool for or an answer to be better. YOU can champion this. RA has great meds to assist now and FM info is so much better than where it was during my start with this. Welcome to your TUNE UP!!
Even if we don't make a difference in the meds and diet area, we will will take a load off just knowing YOU ARE NOT ALONE. Man there are so many who struggle with this mess we are in. NanView Thread