22 BAD FIBRO and a mommy too HELP

Hey all,
I had a RNYGP at 18 my symptoms SLOWLY started after that. I met my child's father at 20 and SLOWLY got worse after that. We are not together and after the birth of my child i felt as if my FIBRO kicked in at high gear. I feel it getting worse. My hands feel as if they are arthritic crimpled and always feel cold to the touch as do my fee. My body is in throbbing pain i walk with a limp. I live at home where my mom is a huge help with childcare. What can i do to get better and pain relief. My dr team just don't understand that stuff wears off and that certain meds effect us differently. ( i would ask my surgeon to help but he is retired last i heard)
Here is a list of what i tried

Cymbalta
Ultram 100mg am & 100mg pm
Ryzolt 100mg (extended release ultram)
Fioricet without codeine
Darvocet-N100/650  1 am 1 pm
Lyrica 100mg twice daily
Celexa
Savella
Melatonin


I got testing done through a rheumatologist and am awaiting answers for those teszts like Lyme and Lupus.  I see a pain dr who manages my meds. I have tried chiropractor and i absolutely can't take NSAIDS i have tried an infants liquid dose with maalox and that leaves me with PAIN PAIN PAIN for 3 days. My dr's are getting frustraited with me for not responding to the meds or having bad side effects. The Savella made me so constipated that castor oil and laxative pills took over 24hrs to cause 1 small BM.  I stopped taking the Savella after 2 weeks when that problem didn't get better. I literally struggle to move. I drop things very often. I have NO energy. I have junky memory. I am weak. I can't work. I cry about the pain it is all over my body and feels crippling and its is 24/7 i wake up in pain and go to bed in the same excruciating pain. My dr's are leery about increasing meds because most patients don't seem to be this bad and most respond well and don't have the fast wear off time. I feel as if my meds don't touch my pain. I have tried days without it and i feel no different then the days i take it. My dr's are leery of putting me on higher medications for fear that with my age and stuff it will send me down a road where i will need more and more due to tolerance. I am being compliant with my dr's i do as they ask but am not getting relief. I have met others with fibro but none say they suffer like i do. My sppech can sometimes slur. Any advice or helpful feedback please...

Not sure if I can be much help but I have found that 150 mg Ultram in the am and 100mg around 3 pm works for me.  I don't take it at night because I can't sleep.  So, I wake up sore but within 1 hour I can function.  I also take a 750 mg Relefan with it.  I think it is a NSAID but you may check.  I was on Savella and it worked well but I had to eat with it to prevent the nausea so I quit taking it before getting my band.

Your case sounds very severe, one of the worst I've ever heard of. Something did jump out at me when you said your feet and hands are cold, that also happens with I believe Reynauds disease which also causes lots of pain. You may even be dealing with multiple pain issues. it's hard to tell. I'm glad you are seeing a rheummy and pain specialist that's a good start if you could find another bariatric surgeon maybe they can confer with the other docs and explain the malabsorption issue and help them understand that you may need to take frequent smaller doses to get relief. I really don't have any brilliant tada info for ya but know that we all understand and you are welcome here always even just to vent. You are indeed fortunate to have a mom who can help! Just keep pushing the docs till they can get something acceptable. I can't say I have 100% pain relief (I don't think any of us do) but I at least can function most days if I plan well. Wish you the best and keep us posted how things go!

I can't offer any brilliant help either. My doc is very reluctant to give me stonger med's too. They act like it is our fault. Gee ya I like to hurt all the time and try different med's and being hopeful they will help !! I also took Relefen before my RYN but ofcourse can't take it now. I take fexeril and vicoden 4x day. I am still in a lot of pain... I do take Lexapro too.
Good luck and prayer your way
Pam

Hon, I am sorry you are in so much Pain. Most Drs. don't even believe in Fibro and if People can't see something then they don't believe in it. I am having gastric bypass done on August 31 .Drs. are also going to fix my Acid Reflux that is 4X higher then a normal persons. I am 100 lbs over weight and pray I don't go into a Flare after the surgery. I was told I had   Fibro 18 yrs. ago after my dr visits, tests, etc.
My mom had Lupus, my cousin MS and other family members with lupus, etc.
  I take it one day at a time and Never Plan anything with anyone. I have let so many ppl down telling them I would go and do so and so and then wake up with panic attack or Fibro pain so sever. If I do over do my body will shut down and I will sleep for days.
  I will keep you in my prayes. If you ever want to talk you can email me, [email protected]
GOd Bless,
Sherry, South Carolina

HELLO I DO KNOW EXACTLY KNOW WHAT YOUR GOING THROUGH AND I WANT TO KNOW ARE YOU GOING TO A DOCTOR THAT TRE ATS YOU FOR THAT? REALLY THERE ISN'T REALLY RELIEF FOR THIS BUT TO BE TOTALLY DRUGGED UP AND SLEEP AND I KNOW THAT IS NO LIFE BUT IT HAPPENS,I HAVE A FAMILY MEMBER MOSTLY IN BED AND SLEEP ALOT WITH SO MUCH PILLS TO TAKE BECAUSE OF THE PAIN,BUT HOPFULLY YOU CAN FIND A DOCTOR KNOWS WHAT THEY ARE DOING .LOOK I HAD GASTRIC BYPASS MAY 30/31ST,2005 CANT REMEMBER THE DAY SORRY LOL.I HAD ALOT OF PROBLEMS FROM THE BYPASS SO FINALLY I BECAME A ADDICT AND IT DON'T TAKE LONG,I WAS IN AND OUT OF THE HOSPITAL SO MUCH I COULDN'T EAT DRINK I CAME DEHYDRATED AND SO ON,I HAVE 3 HERNIA REPAIRS,2 EXPLORATORY SURGURY SO I HAD TO TAKE MORE  MORE PILLS TO TAKE CARE OF THE PAIN NOW I TOO HAVE FIBRO ADDED TO MY LIST OF ILLNESSES.I PUT MYSELF INTO REHAB AND WENT TO GROUP SESSIONS M-SATURDAY 9 TO 3PM FOR 4 MONTHS I GOT CLEAN AND I STARTED HURTING  AND SO ON SO ON THIS WHEN FIBRO CAME INTO MY LIFE SO I FOUND A DOCTOR WHO IS WORKING WITH ME AND IT IS STILL A PAINFUL BECAUSE HE STILL WORKING ON IT I WISH YOU THE BEST KEEP YOUR HEAD UP..OH YEAH I HAVE LYMPHEMIDEMA INTHE LEGS SWELL SO BAD AND OTHER HEALTH PROBLEMS I HAVE HAS MADE ME 85% BEDRIDDEN BOY I SAY WHEN IT HITS IT HITS GOOD RIGHT.KEEP IN TOUCH WITH ME IF YOU DON'T MIND OK TAKE CARE HONEY ,,,,BONNIE MILLER

I am so sorry that you are going through this at such a young age. Your case sounds extremely severe. Can I ask: have youbeen tested for other autoimmune disorders? Lupus, and another oft-overlooked disease called Sjogren's Syndrome? Fibro can exist along with these, but of course the combo can make it much worse.

I know a lot of people that have found relief in hypnosis,meditation,Reiki, acupunture and massage when all else has failed.
I a not sure where you lie, but in Boston, they have The Benson Henry Mind-Body Institute. There is a very tight connection between your mind and body reactions and neither excludes the other. A good rheumatologist should help. But because you're young, I would strongly recommend researching beyond traditional meds and the simple diagnosis of fibromyalgia-just in case you are dealing wth something more.

I am a nurse, my daughter and I have fibro and she has Sogrens-average time to diagnose-8 years.

thank you to all for your wonderful answers. i just want to be a mom and go to school but they are forcing me to live a life of pain, confusion, falling, slurring, homebound . It's not fair. I have to take all thse meds giving me a jumble of side effects but no pain relief. Not to mention the 4,000 mgs of tylenol which will crap out my liver one day. I don't know what to do. I am not depressed but frustrated as to why they won't help me. I have done every treatment possible. I struggle for 15 mins at the grocery store before i give up because i can't take the pain. lying in bed doesn't do much either. I can't even be a mother. I wish they believed me. I try all the treatments and i get so dissappointed when they don't help. Like the chiropractor. I was so upset when i didn't see results after awhile. I got upset when the savella made me SO constipated that 3 different laxatives 4x's a day couldn't even produce gas. I had to stop taking it. 

Hi

This is my first time on this forum so I hope that I'm not suggesting things that you have heard time and time again.  I too have fibro and it was a long 15 years before I was diagnosed.  The good news is that my GP didn't give up on trying to help me.  Anyways. . . . we finally found a doctor who helped me.  I live in Ontario Canada and found a hematologist who stumbled upon her calling with Chronic Fatigue, Fibromyalgia, and Chemical Sensitivity patients.  Her name is Dr. Allison Bested and she has written a book called, "Hope and Help for Chronic Fatigue and Fibromyalgia" .  I know the simplicity of her suggestions will be hard for your mind to wrap itself around but it has helped me a lot.  First, she works hand in hand with a naturopath who tries to make you well in a different way then she does.  Second, she makes her patients clean up their diets.  The most natural foods that you can buy and prepare are needed.  Third, she has a sleep routine that she insists that you adhere to.  She wanted me to take time off from work for half of a year but I couldnt' afford to but I did take 2 days off a week and followed her instructions.  I resisted her plans for me for a few weeks and then gradually did what I was told.  I slowly got better and better.  Finally, she wanted me to manage my pain better. So, I did.

I will explain the sleep hygiene that she taught me and hopefully you can pick up her book at your local library so you can read it yourself as I won't be able to convey her message as well.  So, every hour on the hour I would lie down in a dark quiet room and try to sleep.  I didn't force myself to sleep but I did focus on my breathing and relaxation.  I did this all day long on my days off and weekends.  It is a full time job.  Eventually, I would do that technique all morning and then I would actually sleep about 4 hours in the afternoons.  I would just let myself wake up when I naturally did so - no alarm clocks.   By the time 6 months rolled around I was sleeping about 1/2 an hour every afternoon and my energy and pain levels had lessened.  During this time, I tried not to use up very much energy.  It was a time for thinking about me and thank goodness for my husband because he took up a lot of slack.

Sorry if you have heard this before or if it isn't explained well.  I hope you can find her book at a libraray and read it for yourself and find some kind of relief.  Good Luck.