joined a couple weeks ago.havent posted much due to little computer knowledge ijust have a couple questions.every day i seem worse. havent been diagnoised yet. i now have burning in my head,neck and neck pain. every time i wonder if ill wake up the next day.lm really scared-never been sick in my 63 years. going to mayo next week-which ive seen mixed reviews on.
Hi. Just wanted to send out a few thoughts to you.
You did just fine with your post, so don't worry about having little computer knowledge.
Just wondering if your general M.D. has done the test for the 18 tender points related to fibromyalgia? Those and the lack of sound, restorative sleep are some of the most defining areas of diagnosis that I know of. Having the majority of those tender points for at least six months are a good indication that you have fibromyalgia. They are kind of unique to the syndrome. I was fortunate in 1992 that a doctor who knew about fibro diagnosed me.I am 65 now so have lived with fibro for quite a long time. Mine was probably an after-effect of having Reflex Sympathetic Dystrophy, although FMS is not always related to another disorder.
Hopefully, going to the Mayo clinic there will be doctors there who are familiar with it and know the best treatment available. There haven't been many people that I've read about that have a complete remission, but we learn to live with the symptoms - each of us using whatever medications, natural supplements, diet, etc. that keep us going. I find that some days are better than others so when I have a particularly painful day I try to remember that it may be better tomorrow.
Wishing you the best in obtaining a diagnosis and treatment.
It worries me that you mention - I wonder if ill wake up the next day. . . I have found out that negative thoughts affect us a lot. . . I have had many symptoms with fibro and sometimes it seems like the end is near but it is not. . . I have to stay possitive and live one moment at the time. . . what helps me is not to stress too much. . . to take care of me. . . first me! My pain is mostly on my neck-shoulders-hands-back. . . burning sensation on my feet. . . hands hurt a lot. . . if I pick up something heavy I pull a muscle which puts me to bed - now I am careful! I am almost 62 and was diagnosed almost 9 years ago. . . my left side was hardly working and I was in a lot of pain. . . There have been times I cannot even walk to the restroom. . . but - I communicate with my doctor and just knowing someone is supporting me and not judging me and knows the situation I am in - pain, mostly -helps me a lot. . . The best season for me is spring; although this year it seemed to me we did not have spring - either too cold or too hot for me! I am on 6 medications and a lot of times I resent taking them; but I have to be obedient to my doctor. . . Yesterday was my grandson, Kohen, first year birthday party - I did not go. . . it was below 60, it was raining, it was far, it was early for me - at 10:00 a.m. - and for only two hours. . .I knew it would just be too much for me and could not do it. . . . I forget words a lot - birthdays - sometimes it is very difficult for me to concentrate. . . but, guess what? Some of our friend members are doing worse and some are doing a little better. . . My heart goes out to the very young ones - imagine being 20 with this illness? You will do fine - just communicate with your doctor - tell him exactly how you feel and for how long - I will be praying for you - take good care of yourself and PLEASE - I am sure there will be many many more mornings for you. . . I love you - God bless you always - Irma
hey, you poor thing. I remember how scared i was when i didnt know what was wrong with me, but i made it through it as will you. Im so sorry for your pain as well and Mayo has really good drs but always keep in mind of another opinion. Maybe its just me but i got three opinions from specialists before i finally gave in. Please keep in mind if it is fibro then you can get help to make your days just a tich better and you also have us to complain your heart out to as much as youd like. When i hurt real bad i rest in a hot bath or put heat on the place that hurts, it just feels good. So please keep us informed on your progress and we are always here before your appointment as well. Hugs to you.
i do have a rummy appt here on wed=he uses all kind of vitmns 'natural stuff.i just want to have some docs lined up if mayo says thats what it is..hes gotton mixed reviews on line. sacramento isnt great on docs-may have to try standford..is neck pain/breathing common
Rileybug, I just wanted to wish you well as you go to the Mayo clinic, I’m certain they will get to the bottom of what could be giving you this prob, it could be fibro… As symptoms vary from one person to another, but other things should be ruled out as well. Please don’t be scared, I’m sure they will order the correct testing to figure it out, stressing over it can make symptoms worse, I know that’s easier said than done ! I will be praying you can feel strengthened and assured & that the right dr. Will help figure this out. I do have to tell you there has been times before my diagnosis, ( before i knew what was wrong) when I felt like I was dying… And the anxiet of that just made everything worse. Your not alone & try and keep positive thoughts…please keep us updated !
I’m so glad you have joined with us, the support, care & understanding is the best !!!
Hugs & many blessings
dee
thank so much-i feel s awful-my regular has said he cant do anythin since my symptons are all over the place.ive been complaing for over 2 years-did alot of testing-scans and basic blood work.im so anxious.my daughter whos a 3rd med student will meet us at mayo.
how long have you had this?where you always cold-even summer?its been over 2 years since first symptons-need to get this figured out.
Rileybug,
If you've never been sick in 63 years then I would say you had an excellent run of good health. Congratulations on that because few people are that fortunate. Let's concentrate on year 64, okay?
You do not feel well and are scared. I've had long-term chronic pain for the last two+ decades and many others on this site have had chronic paid much longer. We've learned from all that pain and we are here to share. So, first, WELCOME and second, please know this:
- You are not being punished.
- You are not a bad person.
- It is not time for you to give up.
- Do the best you can with what is going on and you will be okay.
- We are here to help. Whatever we can do to provide insight, information or comfort, that is why I am here.
I will offer up some prayers for you and your situation. I hope you have family and friends around you and that you are able to keep them close.
God bless and best wishes.
thanks so much for the message.it is scary and i have all these weird thoughts in my head. i hope im strong enougt to get through it.
Hi rileybug,
Don't ever be afraid to ask questions, that's why we are all here, and we can't learn otherwise! Don't worry about your computer skills, they are fine.
Fibromyalgia is a very scary disorder, because there are so many symptoms and each person is different, so it's hard to be sure about what's going on. I'm glad you're getting to go to Mayo, that's one of the best places in the country for medical care. Try not to worry too much about your symptoms right now, the added stress can make things so much worse. I'm sure Mayo will help you figure it all out.
Just know that we are all here for you, willing to talk about anything that concerns you, and we'll all be sending healing thoughts !
Hugs,
Renie ❤
Rileybug- you will get through this! Everyone’s advice is so good and we all speak with years of experience. We are all frightened of the unknown and compounding this is the fact that you are experiencing intense pain. Your mind doesn’t understand why it doesn’t stop and with all the pain you aren’t getting the restorative sleep you need and most of us would give away our husbands most days for some! Even after getting the correct diagnosis and a treatment plan - it won’t be easy and instantly you will not feel better, but give it time and if the first meds don’t work, there are more to try. Remember - we are here for you and will help you through this. I’ve had FMS since 1990 and only recently found this sight in July. It has helped me tremendously and I’m still searching for a doctor who will treat ME! Sounds like you are setting yourself up for getting some great medical help and having a soon-to-be doctor for a daughter is wonderful. We’ll be waiting to hear from you with your experience at Mayo. Hugs ~ Sandi.
thanks sandi for your message. ive gotton so many comments i feel a little bit hopeful. ive always had fear of pain and i know that makes it worse. i also worry about findin a doc here to help me-docs are not great in sacramento.havent ever had much luck in 30 years. hopfully mayo will do a good job.ive seen mixed reviews on line,hopeing for the best.
Of course you will wake up the next day, would you want to miss all this fun? Fibro does affect your head also. But my brain is not me. It is up to me weather I want to dwell on the bad thoughts that run though my fibro brain.
Today I am oddly pale, probably comes from being up till 4 to nights out of 7. That usually means a fibro day is coming. So I made sure I had food for tomorrow, and recorded TV shows. I am heading to bed three hours before usual cause I know this night is headed down hill. Tomorrow I will do two loads of wash and nothing else. I just had to learn to live with it, and accept the days that I do not work. Maybe I will be lucky and wake up well tomorrow. I hope so.
You will do fine. Ignore your brain when it says dumb stuff.
Don’t rely on the reviews so much. Not everyone is being seen for the same thing and with all the doctors there, gotta expect a wide range of reviews. As most of us know, FMS isn’t the easiest thing to treat - we all are still waiting for the miracle, but be open to what they find and make sure to ask if they can refer you to a supportive doctor in your home area. It will be reassuring knowing you’ll have someone back home that you can continue to get help from. You deserve all the attention you can get!
When mine first started, I was burning like crazy on my neck, back, and shoulders. Even the back of of head burned.
Glad you are getting with some good drs. Rileybug good luck.
Hey again, please please try not to worry about what might or might not happen, its way to much stress on your poor body that hurts already. I was diagnosed with fibro when i was in my late 20s and im now 39 and i found something to want to wake up for every morning. I have 2 nieces and 2 nephews and another niece on the way and i couldnt be closer to them if they were my own, so when i get sad or hurt i think about them and how much i want to wake up because of them and how much i love them and how much they love me. So trust me as sweet as you are i know you have people you love that you want to see and think about and talk too. Ive only been a member here for a few weeks but a woman on here wrote something that i think describes fibro perfectly. So im going to paste it here for you hoping it helps you as much as it did me. hugs.
MY NAME IS FIBROMYALGIA
by Terri Been
Hi....My Name is Fibromyalgia, and I'm an Invisible Chronic Illness. I
am now velcroed to you for life. Others around you can't see me or hear me,
but YOUR body feels me. I can attack you anywhere and anyhow I please.
I can cause severe pain or, if I'm in a good mood, I can just cause you to
ache all over.
ache all over.
Remember when you and Energy ran around together and had fun?
I took Energy from you, and gave you Exhaustion. Try to have fun now! I
also took Good Sleep from you and, in its place, gave you Brain Fog. I can
make you tremble internally or make you feel cold or hot when everyone else
feels normal. Oh, yeah, I can make you feel anxious or depressed, too. If you
have something planned, or are looking forward to a great day, I can take
that away, too. You didn't ask for me. I chose you for various reasons:
also took Good Sleep from you and, in its place, gave you Brain Fog. I can
make you tremble internally or make you feel cold or hot when everyone else
feels normal. Oh, yeah, I can make you feel anxious or depressed, too. If you
have something planned, or are looking forward to a great day, I can take
that away, too. You didn't ask for me. I chose you for various reasons:
That virus you had that you never recovered from, or that car accident,
or maybe it was the years of abuse and trauma. Well, anyway, I'm here to stay!
I hear you're going to see a doctor who can get rid of me. I'm rolling
on the floor, laughing. Just try. You will have to go to many, many doctors
until you find one who can help you effectively. You will be put on pain pills,
sleeping pills, energy pills, told you are suffering from anxiety or depression,
given a TENs unit, get massaged, told if you just sleep and exercise properly I
will go away, told to think positively, poked, prodded, and MOST OF ALL, not
taken as seriously as you feel when you cry to the doctor how debilitating life
is every day.
I hear you're going to see a doctor who can get rid of me. I'm rolling
on the floor, laughing. Just try. You will have to go to many, many doctors
until you find one who can help you effectively. You will be put on pain pills,
sleeping pills, energy pills, told you are suffering from anxiety or depression,
given a TENs unit, get massaged, told if you just sleep and exercise properly I
will go away, told to think positively, poked, prodded, and MOST OF ALL, not
taken as seriously as you feel when you cry to the doctor how debilitating life
is every day.
Your family, friends and coworkers will all listen to you until they
just get tired of hearing about how I make you feel, and that I'm a debilitating
disease. Some of they will say things like "Oh, you are just having a bad day" or
"Well, remember, you can't do the things you use to do 20 YEARS ago", not
hearing that you said 20 DAYS ago. Some will just start talking behind your
back, while you slowly feel that you are losing your dignity trying to make them
understand, especially when you are in the middle of a conversation with a
just get tired of hearing about how I make you feel, and that I'm a debilitating
disease. Some of they will say things like "Oh, you are just having a bad day" or
"Well, remember, you can't do the things you use to do 20 YEARS ago", not
hearing that you said 20 DAYS ago. Some will just start talking behind your
back, while you slowly feel that you are losing your dignity trying to make them
understand, especially when you are in the middle of a conversation with a
"Normal" person, and can't remember what you were going to say next!
In closing, (I was hoping that I kept this part a secret), but I guess you already
In closing, (I was hoping that I kept this part a secret), but I guess you already
found out...the ONLY place you will get any support and understanding in dealing
with me is with Other People With Fibromyalgia.
thank so much for the post. everyone here is so nice and kind.ive always had good health,so i should bethankfil for that.i just never thought this would be my life.it is a bit of a life change to get used to.once im diagnoised it will propably sink in-have a good cry and try to move ahead.im sad that i wont be the grandma i want to be. oh ya no one in my family has ever had anything like this. my mom is 100 and her sisters lived long with no issues. iguess im sad for the life im going to miss. i also feel bad for my husband-who is doing the best he can'
DEAR HEAVENLY FATHER: THEIR ARE PERSONS OUT THEIR JUST LIKE ME??? I HAVE A STOMACH PUMP FILLED WITH DALUDID PAIN KILLER. IT GIVES ME SOME MUCH PER HOUR. I HAVE LOWERED THE DOSE TRYING TO GET OFF OF NARCOTICS. NOW, I REMEMBER THE PAIN I HAD AND WHY I HAD THE PUMP. I HAVE HAD FOR 3 DAYS BURNING LIKE IF YOUR BURNT YOUR HAND ON A STOVE, YOU RUN AND PLACE WATER/BUTTER OR WHATEVER TO GET RID OF THE BURNING SENSATION..
WELL, RECENTLY I HAVE HAD THE BURING FROM THE TOP OF MY HEAD TO THE TIP OF MY TOES!!!ESPECIALLY IN THE PRIVATE AREAS OF THE BODY. IT WAS CRAZY! I DID NOT REMEMBER THE PAIN UNTIL THE DR. LOWERED THE PUMP DOSAGE. SO, FOR 3 DAYS I HAVE BEEN TRYING TO SEDATE MYSELF TRYING TO SLEEP THRU IT. IT DID NOT WORK AND THAT IS WHEN I REALIZED I HAD IT BEFORE BUT ONLY FOR ONE DAY. JUMPING IN A SEVERAL DEGREES OF WATER(HOT,HOT)OR COLD, COLD!!3 DAYS OF MISERY!!SO, NO I AM GOING TO TELL THE PAIN MGR DOCTOR NOT TO LOWER THE STOMACH PUMP ANY LOWER. WE WERE PLANING ON GETTING OFF THE NARCOTICS BY JULY!!!!!!!!NO WAY NO HOW, I DO NOT WANT TO EXPERIENCE ANY OF HE PAIN AS BEFOREL. NOW I AM REMEMBERING THE TERRIBLE PAINS AND EFFECTS, OF LUPUS, FIBRO, MS, AND MORE!!!! PLEASE DEAR GOD GIVE ME STRENGTH TO BARE THE UNKONWN OF 15 YEARS OF NARCOTICS. I CAN NOT TAKE ANY MORE PROBLEMS. IF I SIT TOO LONG AT THE COMPUTER. MY LEGS ARE NUMB. I DO NOT KNOW WHAT CAUSES IT WITH ALL THE PROBLES DISEASES I HAVE. ALL I KNOW I AM SUFFERING AND I FEEL IF THEY PUT DOGS TO SLEEP WHAT ABOUT PEOPLE LIKE ME WHO SUFFER AND CRY AND JUST WANT TO GIVE IN!!!I PRAY GOD FORGIVES ME BECAUSE I KNOW HE SUFFERED MORE THAN I HAVE BEEN EXPERIENCING. YES I PRAY AND I KNOW IT IS OUR HEAVENLY FATHERS HANDS BUT, I CAN NOT TOLERATE ANY MORE PAIN. I NEED THE NARCOTICS. OR I WILL NO BE ABLE TO HAVE LIFE IN IT SELF. SO, ALL OF YOU OUT IN FIRBO LAND, REGARDLESS, FIBRO, LUPUS, OR MS IF YOU ARE TAKING SOME NARCOTICS AND IT GIVES YOU A NEAR NORMAL LIFE STYLE---ENJOY IT WHILE YOU CAN........ I HAVE A SERVICE DOG AND HE KNOWS WHEN I AM IN TROUBLE AND HE JUST MOANS WTH MY CRYING,. THEIR HAS TO BE MORE THAN LIFE OF SUFFERING. I DIVORCED MY HUSBAND FOR OVER 20 YEARS AGO, WE HAVE A SON TOGETHER.,. I HAVE NEVER HEARD FROM HIM AGAIN, UNTIL HIS MOTHER CALLED AND SAID THAT HE WAS IN JAIL. SHE KNEW I WAS A JR. ATTORNEY. SO SHE CALLED ALL THE TIME. I WROTE HIM AND WHILE HE WAS IN JAIL HE SAID YOU WILL ALWAYS BE MY WIFE AND I KNOW YOU DIVORCED ME BECAUSE OF LUPUS AND THE TROUBLE AHEAD. I KNOW WHEN HE WAS GETTING RELEASED FROM PRISON FROM SOMETHING HE DID NOT DO, HE CALLED AND TOLD ME HE LOVED A WOMAN NAMED RITA AND HE HAD BEEN LIVING WITH HER FOR 4 YEARS.
WHAT COULD I HAVE SAID OTHER THAN "GOOD LUCK AND BE HAPPY"DEEP INSIDE MY HEART I STILL LOVE HIM AND ALWAYS WILL. HE NEVER SUPPORTED OUR SON. I DO NOT KNOW WHAT HE IS DOING WHILE OUT OF JAIL!! I CALLED HIS GIRLFRIED AND SAID PLEASE HAVE GERALD CALL ME. SHE SAID WE HAVE BEEN LIVING TOTAL OF 18 YRS. (WHAT BS.) SO, I SAID NOTHING. JUST HAVE HIM CALL ME BECAUSE OUR SON IS ON DRUGS AND HAS A METHO PROBLEM. I NEEDED HIS HELP. WELL WHEN I CALLED HE WAS WITH HER AND SAID I CAN NOT TALK TO YOU NOW. BUT, "TAKE CARE OF YOURSELF" GOOD BYE. WHILE I WROTE HIM IN PRISON AND HE SAID SO MUCH LIKE HE ONLY TWO WOMEN IN MY LIFE I CAN TRUST IS YOU AND MY MOTHER. THAN HE NEVER CALLED ME OR ANYTHING AFTER HE GOT BACK TO HIS GIRL FRIEND OR MAYBE GOING TO MARRY HER???SO, HERE I AM BROKEN PHYSICALLY FROM BEING SICK AND HEART BROKEN FROM HIM. I ALWAYS WILL LOVE HIM REGARDLESS OF HIS NONE SUPPORT FOR HIS SON. MY SON NEVER MEET HIS FATHER!! HE WAS 2 YRS OLD WHEN HIS FATHER FLEW HE COUP. SO I DID WHAT I HAD TO DO AND THAT WAS GIVE HIM HIS FREEDOM! HE WILL NEVER KNOW HOW SICK I REALLY AM AND I EFFECTS ON MY LIFE. I HAVED LIVED ALONE AND NO SEX FOR OVER 20 YEARS BUT, I WOULD PROBABLY DIE IF I DID HAVE IT ANYWAY LOLOLOL HA HA! WHO NEEDS A HEADACHE FOR A 20 MINUTE SESSION JUST TO SAY. I HAVE NO OTHER FAMILY LEFT BUT MY MOTHER WHO IS 86 YRS OLD. I AM MAKING THE MOST OF OUR TIME TOGETHER. NOW SHE SEES ME SUFFERING AND KNOWS I WAS ALWAYS BEING BEATEN UP BY AN OLD SISTER WHO NEVER CARED OR LOVED ME. NOW SHE IS INTO WITCHCRAFT. NEVER HELPED, NEVER CARED ONLY FOR THOSE WHO HAVE MONEY. MY MOTHER HAS NOTHING AND EVEN THOU MY CHILDHOOD WAS ABUSE. I AM CARING FOR HER. ONLY GOD CAN JUDGE HER. SO, THESE ARE MY CIRCUMSTANCES AND I PRAY GOD WILL WALK THE EARTH SOON.......I AM SUFFERING BEYOND WORDS AND MY MOTHER AND I WANT TO DIE TOGETHER. SO NEITHER ONE OF US IS LEFT ALONE WITH MY SERVICE DOG RUSH (ALWAYS HAD A SERVICE DOG)! SO HELP ME PLEASE AND TELL ME WHAT MAKES SOMEONE FEEL BETTER ABOUT THE PAIN EFFECTS I AM HAVING. I HAVE A BROKEN HEART WHICH ALSO IS CONGESTIVE HEART FAILURE.I JUST DO NOT WAN TO BE ALONE IF MY MOTHE SHOULD PASS AWAY.. SHE HAS DEMSIA FROM A CAR ACCIDENT AND WE DID NOT GET ANY MONEY DUE TO MY BROKEN BACK THEY CLAIMED IT WAS FROM LUPUS AND GOT AWAY FREE. SO, HERE I AM WISHING AND PRAYING FOR THE MONEY FOR MEDS AND ESPECIALLY TO FILL THE GAP OF WHO HAS EXPERIENCES THAT I HAVE?????? DEAR GOD, HELP ME TO BEAR THE UNKNOWN PAIN FOR ANOTHER EPISODE IN MY LIFE.
I CAN SAY TO ALL OF YOU. PRAY AND TRY TO LIVE EACH DAY TO THE FULLEST EVEN THOU WE MAY SUFFER. BECAUSE LIFE IS SHORT ANYWAY.
HONESTLY AND RESPECTFULLY
MICHELE, AND SERVICE DOG RUSH PS I DO NOT KNOW WHAT TO DO TO LIST THIS ON THE SITE AND KEEP IT ON MY COMPUTER IF ANYONE CAN HELP ME PLEASE EMAIL ME AT
mickeyitaly3@aolI HOPE SOMEONE CAN SAVE THIS TESTIMONY FOR ME UNTIL I KNOW HOW TO DO IT MYSELF THANKS MICHELE AKA MICKEY
1806-hello.docx (12.3 KB)
Rileybug,
I am very pleased to know that you are going to the Mayo Clinic! They have a great staff for Fibro and Autoimmune! There will always be mixed reviews, on the best of hospitals, especially those who do not want to follow the advice of the professionals. My husband was ready to pack me up and take me there when I found my Rheumatologist. I think you are very wise and exceedingly fortunate to be going there!
Now get yourself ready, hopefully they have already sent you a questionnaire, if not get a list of symptoms and complaints together, along with past and current meds and family history. Don't forget medicine allergies. If you know of any family members diagnosed with any Rheumatic or Autoimmune diseases. If anyone in the family has arthritis, try to find out what kind it is.
Think about the most important questions you have, keeping them limited to the most important. I'm thrilled for you, you are going to see some of the world's finest medical professionals! I wish you the very best!
As for posting, you've got the hang of it! Good to hear from you. Please post on your return for mayo, I'm very happy for you!
Wishing you well,
SK