Fibromyalgia pain: Let's connect

Posted by clownscrytoo @clownscrytoo, Oct 22, 2016

Is there anyone here that suffers from fibro? I had the 'tender spot test' several years ago and I had 17 out of the 18. I try my hardest to get through the pain with my 4 hydrocodone/acetaminaphine pills a day, Tiger Balm rubbed into areas that are the worst, light exercises, and distracting myself with hobbies or chores, etc; but there are many occasions where none of that helps and I spend most of the day holding down the couch, getting up about 30-45 minutes after that, walking/standing around the house for 15-20 minutes, or sitting for about 15-30 min. I do not drive and my husband works 6 days a week, overtime almost every day, so I'm alone a lot. my wonderful husband is very supportive and I am very grateful for that, but my only other friends are online, out of state, and I will probably never even get to meet them. when extreme pain takes over, my depression takes over and it is so difficult to find hope. does anyone have tips for fibro, whether diet or over-the-counter meds (I've tried them all, I think), or anything, besides hobbies and such? I've tried every over-the-counter med, and the Tiger Balm does cover some of what the pain pill doesn't help, but I'm hoping one of our members might have some knowledge that could help. I'd really appreciate it.
hugz,
Clownscrytoo

Interested in more discussions like this? Go to the Fibromyalgia Support Group.

@dais

It worked! I was diagnosed with Fibro and Chronic Migraines at Mayo Clinic about 5 years ago. Before I went to the Mayo it was a rollercoaster ride of different specialists, pain clinics, neurologists. They all had different diagnosis and "treatments ". Just like others in the post, it has just been a blur of different drugs and procedures that didn't work. Going to the Mayo was such a blessing because I finally received answers and help. (I still go every three months) BUT, I feel like I have gotten to the point of no return. The pain is so intense and unrelenting lately...like every cell in my body is screaming. I was hoping to reach out to people who know what I'm going through. That may have new ideas or words of wisdom. I have a great family, friends, etc. but they don't know what it is really like and some days I just can't fake it anymore. So sorry to be so wordy...thank you

Jump to this post

Do you drink a specific brand? I see Trader Joes sells a ginger and tumeric tea.

REPLY
@dais

It worked! I was diagnosed with Fibro and Chronic Migraines at Mayo Clinic about 5 years ago. Before I went to the Mayo it was a rollercoaster ride of different specialists, pain clinics, neurologists. They all had different diagnosis and "treatments ". Just like others in the post, it has just been a blur of different drugs and procedures that didn't work. Going to the Mayo was such a blessing because I finally received answers and help. (I still go every three months) BUT, I feel like I have gotten to the point of no return. The pain is so intense and unrelenting lately...like every cell in my body is screaming. I was hoping to reach out to people who know what I'm going through. That may have new ideas or words of wisdom. I have a great family, friends, etc. but they don't know what it is really like and some days I just can't fake it anymore. So sorry to be so wordy...thank you

Jump to this post

Yes this is the brand Trader Joe's It is so good I think you,'ll like it's not wifey at all but you can taste the ginger

REPLY
@oregongirl

@dals, I am so sorry to hear of the road you have traveled. I believe I could say I know some of what you have faced. Every doctor has said, well, I don't know maybe your need more rest, or lets check this and that. How many years did I walk this earth and did not know I had RA. Now I found out I am at Stage 3 on Kidney Disease...How long has that gone overlooked. I finally have an appt at the Pain Clinic at the University. I really don't want any narcodics. But, a stronger dose of Ibprophen. I pray that you have some relief. Even a day of no pain will make you feel like there is a chance that you will someday be pain free.

Jump to this post

Cymbalta I thought was going to help but after a week it wore of ,best thing I have found for me is Fibro Malic has the right kind of magnesium in it.So I'm sticking to this and Tramadol Meloxicam .

REPLY
@oregongirl

@dals, I am so sorry to hear of the road you have traveled. I believe I could say I know some of what you have faced. Every doctor has said, well, I don't know maybe your need more rest, or lets check this and that. How many years did I walk this earth and did not know I had RA. Now I found out I am at Stage 3 on Kidney Disease...How long has that gone overlooked. I finally have an appt at the Pain Clinic at the University. I really don't want any narcodics. But, a stronger dose of Ibprophen. I pray that you have some relief. Even a day of no pain will make you feel like there is a chance that you will someday be pain free.

Jump to this post

I was also prescribed Cymbalta for pain and it has not helped one bit. Also my skin began breaking out all over the place - my face, my chest and my back. I'm 56 and my skin is always clear and never breaks out. I couldn't figure out what was causing it so I began eliminating new things that I had begun using but I was still breaking out more than ever. Today I looked up Cymbalta and Acne and it popped up immediately, not just patients complaining about it. Rather, it was a scientific study that showed how many people suffered what kind of side effects. Quite a lot of people experienced breaking out with Acne. I began to taper down tonight because Cymbalta is a drug that should never should be stopped cold turkey. I will call my MD tomorrow to confirm with him that I'm tapering correcting,

REPLY

Happy Saturday fibro folks. I no longer take OTC's due to starting to have stomach issues. I have given up on doctors as it is a waste of my gas money. I do what I can diet wise. Today I am going to rest and recuperate from 3 days w/ my 3 year old grandson. It was delightful! I don't want him growing up thinking his grandma is old and no fun. Amazing what one can do out of love!!! Moments to remember and cherish. I will rest today with my happy memories of playing with him and not telling him I couldn't play because he would not have understood and I do not want people seeing me as I really feel. Doing what I can to leave a trail of happy memories.

REPLY
@parus

Happy Saturday fibro folks. I no longer take OTC's due to starting to have stomach issues. I have given up on doctors as it is a waste of my gas money. I do what I can diet wise. Today I am going to rest and recuperate from 3 days w/ my 3 year old grandson. It was delightful! I don't want him growing up thinking his grandma is old and no fun. Amazing what one can do out of love!!! Moments to remember and cherish. I will rest today with my happy memories of playing with him and not telling him I couldn't play because he would not have understood and I do not want people seeing me as I really feel. Doing what I can to leave a trail of happy memories.

Jump to this post

HI THERE!
MY COMPUTER IS A PAIN. I WROTE MOST OF MY REPLY AND THEN IT DISAPPEARED.
ANYWAY, SO HAPPY YOU HAD A GREAT TIME WITH YOUR GRANDSON. I KNOW WHAT YOU MEAN ABOUT NOT WANTING YOUR GRANDSON TO REMEMBER YOU AS OLD AND NO FUN. I FEEL THE SAME WAY.
MY KIDS USED TO TELL MY GRANDS THAT I WAS SICK, SO BE CAREFUL. I ASKED THEM NOT TO DO THAT. NOW, THEY TELL THEM TO BE CAREFUL OF MY BACK AND NECK. I CERTAINLY PREFER THAT THAN BE THOUGHT OF AS THE SICKLY GRANDMA.
MY OLDEST GRAND, WHO LIVES DOWN THE STREET, HAS BECOME VERY CREATIVE. AS YOU I AM SURE YOU KNOW, THERE ARE DAYS WHEN I CANNOT GET OUT OF BED OR OUT OF MY CHAIR. SHE HAS FOUND WAYS TO BRING THE FUN TO ME. SHE IS NOW OLDER AND 'KNOWS HOW TO HANDLE GRANDMA.' SO WHEN I AM FEELING WELL, I TAKE ADVANTAGE TO DO THE 'FUN' THINGS I CAN'T ALWAYS DO. I BELIEVE THAT SHE JUST WANTS TO BE WITH ME. SOME TIMES, SHE WILL JUST COME SIT ON MY CHAIR WITH ME AND READ OR BRING A LITTLE TOY OR COME INTO MY BED AND WATCH SOMETHING.

AS FOR DOCS, I AM NOT GIVING UP ON THEM. AS YOU MAY OR MAY NOT KNOW, I HAVE FIBRO BUT I ALSO HAVE CERVICAL AND LUMBAR SPINE ISSUES. THEY SYMPTOMS COULD OVERLAP. I CAN SAY THAT I THINK THE FIBRO PART IS UNDER CONTROL MOST OF THE TIME (EXCEPT WHEN I WOULD GET A MASSAGE AND THEY WOULD DO
DEEP TISSUE...I LEARNED MY LESSON ON THAT ONE). ANYWAY, I HAVE TAKEN WHAT I LEARNED YEARS AND YEARS AGO AND IT HELPS.
I THINK I MAY HAVE SHARED WHAT I DID AND STILL DO TO HELP. IF I DID, I APOLOGIZE:
1. TAKE MEDS TO GET ME INTO THE DEEP SLEEP (HEALING STAGE).
2. EVEN WHEN I AM IN PAIN, WALK AND EXERCISE, EVEN IF I BREAK IT DOWN TO SEVERAL TIMES A DAY.
3. AQUATIC PT, NOT LAND
4. THERAPUTIC MASSAGE WITH SOMEONE WHO KNOWS ABOUT AND UNDERSTANDS FIBRO. IT TOOK ME A LONG TIME TO FIND SOMEONE. SHE WAS GREAT AND CONTINUED TO TAKE CLASSES SO THAT SHE COULD TREAT ME.
5. CHIROPRACTOR

SADLY, I CANNOT DO MUCH OF THESE THINGS BECAUSE OF MY SPINAL ISSUES.

ANYWAY, DO WHAT YOU CAN, WHEN YOU CAN, AND ENJOY EVEN WHEN YOU FEEL LIKE YOUR BODY IS ATTACKING.

HAVE A GREAT WEEKEND!!
RONNIE

REPLY

I am going to be with my grandson today. I always make up excuses to not see him because I'm embarrassed by not being able to do much with him. I've been in a Fibro flare for a long time. Sometimes I think winter has a bad effect on me. Does anyone else suffer worse in the winter?

REPLY
@dais

I am going to be with my grandson today. I always make up excuses to not see him because I'm embarrassed by not being able to do much with him. I've been in a Fibro flare for a long time. Sometimes I think winter has a bad effect on me. Does anyone else suffer worse in the winter?

Jump to this post

HAPPY SATURDAY!
FIRST, THE WEATHER AND FIBRO OR ANY OTHER BONE, MUSCLE, JOINT ISSUES. YES, THE WEATHER DOES IMPACT IT. A DOC ONCE TOLD ME NO BUT WHEN I WENT TO PT, HE EXPLAINED IN GREAT DETAIL WHY IT DOES. I CAN'T REMEMBER EXACTLY OR THE ENTIRE THING, BUT IT HAS TO DO WITH THE BARIATRIC PRESSURE.

I WAS BROUGHT UP AND LIVED UP NORTH ALL MY LIFE. WHEN I RETIRED ABOUT 5 YEARS AGO, WE SPENT 6 WEEKS IN CENTRAL FLORIDA. WE LOVED IT AND I FELT BETTER THERE THAN IN THE COLE OF NEW JERSEY. WE DECIDED TO BECOME SNOW BIRDS SO THAT WE WOULDN'T BE TOO FAR FROM OUR CHILDREN AND GRANDS. WELL, AFTER JUST A FEW MONTHS, WE LOVED IT SO MUCH WE SOLD OUR HOUSE IN NEW JERSEY AND MOVED TO CENTRAL FLORIDA FULL TIME. YES, IT IS HUMID, BUT THAT IS BETTER THAN THE COLD.

JANUARY 2017, WE WENT UP NORTH TO STAY WITH OUR SON AND HIS FAMILY IN MARYLAND. WE FROZE. WE WORE WINTER CLOTHES IN THE HOUSE. EVERY BONE AND JOINT IN MY BODY ACHED. I COULDN'T WAIT TO GET HOME. AS SOON AS WE DID, ALL THE ACHES WENT AWAY. SO, I REALIZE THIS IS A LONG ANSWER TO YOUR WEATHER QUESTION.

AS FAR AS YOUR GRANDSON. THIS MAY SOUND LIKE I AM PREACHING BUT NEVER, EVER GIVE EXCUSES TO NOT SEE YOUR GRANDS!!! I KNOW HOW YOU FEEL ABOUT NOT BEING ABLE TO DO WHAT YOU WANT WITH THEM BUT THAT IS NOT THE PURPOSE OF A VISIT. THE PURPOSE IS TO BOND AND SHOW HIM HOW MUCH YOU CARE ABOUT AND LOVE HIM. IT TOOK ME A LONG TIME TO LEARN THAT!!

DON'T TELL HIM YOU ARE SICK, BUT 'TRAIN' HIM TO BE CAREFUL ON THE AREAS THAT GIVE YOU THE MOST PAIN, EVEN IF IT IS YOUR ENTIRE BODY. MY DAUGHTER MOVED HERE WITH HER FAMILY WHEN WE MOVED. IT IS WONDERFUL FOR MANY REASONS. MY GRANDDAUGHTER HAS LEARNED THAT THERE ARE PARTS OF GRANDMA'S BODY THAT HURT AND SHE HAS TO BE CAREFUL. IF I AM STUCK IN BED OR MY CHAIR, AND SHE WANTS TO PLAY, SHE HAS FIGURED OUT WAYS FOR US TO PLAY WITHOUT ME BEING HURT. IF I JUST CAN'T PLAY, SHE'LL SIT WITH ME ON THE CHAIR AND WE'D PLAY WITH HER SMALL TOYS OR WE WOULD READ OR WATCH TV. SAME THING IS I AM IN BED.

HOPE THIS HELPS.
SORRY, I AM VERY WORDY.
ENJOY YOUR WEEKEND.....
RONNIE

REPLY
@parus

Happy Saturday fibro folks. I no longer take OTC's due to starting to have stomach issues. I have given up on doctors as it is a waste of my gas money. I do what I can diet wise. Today I am going to rest and recuperate from 3 days w/ my 3 year old grandson. It was delightful! I don't want him growing up thinking his grandma is old and no fun. Amazing what one can do out of love!!! Moments to remember and cherish. I will rest today with my happy memories of playing with him and not telling him I couldn't play because he would not have understood and I do not want people seeing me as I really feel. Doing what I can to leave a trail of happy memories.

Jump to this post

Parus that's the proper attitude positive thinking I have given up on Dr.s long ago There is a very good article by Dr. Mercola today please read it go to his site this talks about dementia,Alzheimer's but is good for everyone.For my fibro the fibro site recommends more Magnesium.I take Fibro Malic from Vitacost but in this article he says a new Magnesium Theronate breaks the blood-brain barrier holds alot of promise,I'm going to research it I just do Tramadol for sleep.We fibro people need a solid sleep to relax our muscles. So glad you are doing what your doing Linda

REPLY
@dais

I am going to be with my grandson today. I always make up excuses to not see him because I'm embarrassed by not being able to do much with him. I've been in a Fibro flare for a long time. Sometimes I think winter has a bad effect on me. Does anyone else suffer worse in the winter?

Jump to this post

Hi dais read my reply to parus we fibro people have to be positive for yourself and k/times we feel better emotionally if we can Read the article Dr.Mercola.com he has a good article today about dementia but pertains to all illnesses also hope you feel better today.

REPLY
Please sign in or register to post a reply.