What more can be done to bring awareness about Fibro and it's debilitating pain

General
1

Hello All,

I'm not sure perhaps this subject has been addressed in the past, but since joining LWF a few plus months ago I am so angry that many of my American friends are not able to get the proper pain medications to enable them to function and have some quality of life!

I am very fortunate that I have a doctor here in Canada who know's the pain of Fibro and his first priority was to lessen my pain and get me to a point where I could breath and able to function. Now maybe this is a problem in Canada as well and I'm just one of the fortunate one's. Since being diagnosed and in talking with other people most either know of someone who has Fibro and/or has a family member stricken with this debilitation syndrome. Seems to me the problem is getting bigger!!

I am mad that doctors continue to allow people to suffer. It is plain and simple INHUMAN! Fibro meds do not in themselves rid us of the biggest part of the pain. I am convinced if I were only on Cymbalta I would not be able to function. It is the pain medication which allows me some relief. Doctors have to be made aware that it takes much more than supplements, fibro meds, exercise etc. to help us. What are some suggestions that someone could say to their doctor who is not giving pain medication or not enough of it to allow them a quality of life they so deserve. I have made a friend here and I am just so upset that her doctor will not give enough pain meds. I know there is a growing problem of these meds being sold on the street, but there has to be a way to tell the difference!!

Finding another doctor is sometimes impossible when you live in a small town...any suggestions? As far as on a more widespread level is going to your Congressman an option? I'm not too up and up on all American politics, but there has to be a way!

2

Hi Sue,

I have not had this problem with my GP, of course he and his wife took care of me when I was well. His Mother had a bad back and suffered terribly, and finally had surgery, which did help her in her last years of life. Of course I have much more than fibro.

As far as them not prescribing pain meds for fibro, it depends how they are defining it, if they are really looking for the CAUSE of it. My Rheumatologist said that my autoimmune arthritis most likely caused mine, and is my biggest problem, I agree. Something pushed us over the edge, something like physical or emotional trauma, or some underlying illness.

Most MDs consider fibro a condition, not a disease, and will not give narcotics unless there is clearly evidence of disease. For instance, my joint damage, stenosis, degenerative disc disease are all right there on the x-rays. So prescribing me narcotics is validated by the x-rays.

There are so many pain medicines sold on the street right now, I hear most are $50.00 a pill!

I surely do not enjoy taking ANY of the meds, before all of this kicked up the only meds I used were for seasonal allergies!

Not sure this is an answer to what you are asking or not, but it's what I know about it!

As far as awareness, well, too bad we don't have a famous spokesman for some of the meds. I take Enbrel for psoriatic arthritis, Phil Michelson does commercials for it. My Rheumatologist said "that golfer surely has done a lot for getting the word out about Psoriatic arthritis", at present the average time it takes for a diagnosis is 7 years, and that is about how long it too me, prior to the commercials, the average time it took for a diagnosis was 35 years, he said they suffered terribly, and there were few meds to offer once they were diagnosed!

Wishing you well,

SK

3

Hi SK,

Thanks for your reply. Thought this was thought provoking!

"So when someone says to you, "Oh, that's just a syndrome," maybe you can remind them that's what the S in AIDS stands for. Then you can add, "AIDS became classified as a disease once scientists figured it out – so it's just a matter of time before FMS and ME/CFS are diseases, too."

I'm sure you have read most things written on Fibro...Just think it's a shame that the medical profession and a lot of people think this way.

Hope you are well,

Sue

4

Oh, Rattled. I am so sorry. I can't believe they messed up your meds again. There seems to be something criminal going on. I'm glad you are posting and keeping in contact here. You may want your notes to help you in the future. I don't understand what is going on with your doctors and lack of communication about the meds that you obviously cannot take.

You will veel better. I'm sure you will. I know you feel alone, but there are so many here that are right there with you. Be encouraged, girlfriend. Be strong and get through this.

LKitty

5

My gosh they sure are creating a living hell for you aren't they? It does matter to many people that you are suffering and sick it certainly matters to all of us here as well as to your family. There are too many errors and incompetence in the medical system. I know it is the same here in Canada. I am truly sorry that you seem to getting the brunt of some of these errors. So after you told them that you wanted them to order directly from the manufacturer when will you get this medication? Will this put you back on track with your depression? Hang in there I can understand your exhausted and with all the side effects you have been experiencing has been so difficult on you, but I'm sure once your taking the right medication you will be feeling better soon. Were here for you when you need to talk and vent. Just don't give up the fight. My heart goes out to you...try to be strong. I'm sending you prayers for healing and gentle hugs to comfort. P.S. Thank you for the friend request! :) Message me anytime okay? Sue x

6

Dreamcatcher,

I wish I had an answer to your question about how to advocate for real pain meds. My docs all said they wouldn't give them out. Thanks, Michael Jackson and the Drug Enforcement Agency. Michael's abuse of propofol, through his "doctor" led not only to his death but also to the DEA clamping down on the use (and abuse) of prescription pain meds. Doctors risk losing their licenses if the DEA is displeased with their pain prescription practices. So that ensures that virtually none of us US fibro sufferers get appropriate pain meds.

If your friend can't find a local doctor, she may need to do some traveling to see someone worthwhile. For finding/googling a doc, she could type in the field the potential doctor works in (example Rheumatologist) then the location she wants, then add the word "fibro" at the end, then Enter. When she gets some hits she could then type in the docs name, plus the word "reviews" or "ratings" or "fraud." If there are dissatisfied clients, she's bound to find them here. Same goes for satisfied clients.

Hope that's of some use.

Hugs,

Petunia

7

Thank you Petunia I will pass on this information to my friend as she lives in the U.S. I feel rather guilty when I read many of the stories here as I am fortunate to have found a Pain Management Doctor who told me from the beginning his goal was to reduce my pain. Yes, I take the dreaded narcotics and there is definitely a stigma that goes with that! I had quite a hard time in the beginning to even make my mother understand my reasons for doing so although it surprised me that I had to do that as she saw the pain I suffered for 7 months while debilitated and curled up on my sofa in agony every day prior to my diagnosis. She was very concerned about what I was putting into my body and I get it, but I also get that if I had the choice I choose not to live in debilitating pain! It created many arguments and stress on me and thankfully now we have agreed to disagree and stay away from that topic. I was told by an acquaintance who lives with chronic pain from a work related accident for the past 20 + years that I am very fortunate to have found this doctor. I had checked out his reviews prior to seeing him and with over 100 reviews there wasn't many negatives just that he has too many patients and the waiting time is long. I am never 100% pain free and do have most of the other symptoms that come with Fibro as well as flare up times where not even the pain meds help, but feel grateful and blessed I can breath most of the time. In addition I take Cymbalta, Vitamins D, B12, Magnesium, Omega 3, Calcium. I tried acupuncture, massage therapy, chiropractor, a bit of yoga, meditation and although some feel good at the time they do not last longer than the car ride home. I fear the day something would happen and I would have to go back...I don't even want to imagine it or go there! I am so angry that you poor people are suffering the way you are needlessly and yes it is people like Michael Jackson and people who abuse who ruin it for people who genuinely suffer with chronic pain. There has to be a way as how can a civil society allow this suffering...it's inhuman in my mind. So my heart goes out to everyone of you and I pray for a solution to this problem!!

Warm hugs,

Sue

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HI DREAMCATCHER IM FORTUNATE TO HAVE A GOOD RHEUMI NP SHE RECOGNIZES IT AS A REAL MEDICAL CONDITION SHE EXPLAINS THINGS TO ME AND HELPS ME UNDERSTAND SHE HAS HELPED ME THE SRTETCHING EXERCISES PRE-EMPTIVE RESTING AND PACING PEOPLE DONT REALIZE HOW MUCH PAIN WERE IN AND PEOPLE WHO HAVE OTHER TYPES OF PAIN BACK ARTHRITIS SHOULD UNDERSTAND MY DAD HAS HAD BACK PROBLEMS OVERDOES IT AND THEN SUFFERS HE ASKED ME EARLIER THIS YEAR TO HELP MOVE HIS QUEEN-SIZED BOXSPRINGS AND MATTRESS INTO THE LIVINGROOM I SAID NO HE LIFTED AND DLID THEM HE COULD HAVE LET THE DELIVERY MEN REMOVE THE OLD ONES AND PUT IN THE NEW ONES OR IF I COULD RUN THE VACUUM I SAID BOTH MY DRS SAID TO DO WHAT I CAN AND DONT WORRY ABOUT WHAT YOU CANT I SAID THE DRS KNOW BEST HE REPLIED IM SMARTER THWN THEY ARE I KNOW MORE HE WANTED ME TO HELP WITH THR AIRCONDITIONER HE BOUGHT A NEW ONE LAST YEAR DIDNT TSPE AND TARP IT HE SHOULD HAVE HAD SOMEONE ELSE PUT IT IN HIRE SOMEONE HE HAD STEROID SHOTS IN HIS BACK LAST YEAR AND AGAIN THIS YEAR HE BOUGHT AND INVERSION TABLE WHICH HELPS BUT HE LOST ANY BRNEFITS FROM THE SHOTS AND INVERSION TABLE BY PUTTING IN THE AIRCONDITIONER IM GLAD I HAVE MANY UNDETSTANDING SUPPORTIVE PEOPLE IN MY LIFE WE HAVE TO GET PEOPLE TO UNDERSTAND WHAT ITS LIKE TO BE US AND THE CONDITION IS REAL WHEN IM IN THE CAR WITH A HANDICAPEE STICKER I DONT FEEL STRANGE I HAVE A REAL MEDICAL CINDITION LIKE SOMEONE WITH A WALKER OR WHEELCHAIR CANE I TRY TO EXPLAIN TO PROPLE MOST TRY TO UNDERSTAND BUT SOME EILL NEVER TRY TO UNDERSTAND NO MATTER HOW MANY TIMES YOU EXPLAIN OR SAY NO I STAY POSITIVE NO MATTER WHAT HAPPENS THAT INCLUDES TRYING TO GET DISABILITY YOU KNOW YOU CAN OR CANT WORK YOU HA WORKVE TO PROVE TO SS YOU CANT WORK IM GETTING MY PAPERS TO FINISH THE PROCESS THE ALJ HEARING IS NEXT WEDNESDAY. JUNE 19TH IN BURLINGTON IOWA I WONT HAVE TO TRAVEL TO DES MOINES IOWA 31/2 HOUR TRIP THEN RETURN HOME THE TRIPS TO HARD THR HEARINGS A 20 MINUTE DRIVE VERY EASY THEN ILL TALK TO THE ATTORNEY HIS IMPRESSIONS AND ADVICE THEN MY FRIEND JOAN AND I WILL ATTEND THE CHURCH LADIES ANNUAL TEA PARTY ILL ACCEPT THE JUDGES DECIDION HAVE A GOOD DAY