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Fibromyalgia pain: Let's connect
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
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Hello my fibro worriers. I'm Dave. I was diagnosed with fibromyalgia in 2010. I got my SSI/SSDI for it in 2012. Since then I have never had a doctor that even cares . NADA. 2 relationships, gone. Thanks fibromyalgia, love u to. 3 days now broke up. I'm homeless, hurting with no PCP or any care. So I seen the Mayo clinic had a fibro clinic. I called and it looked promising. Even gave me information on housing. Wow. Then today it all crumbled. Turned me Down. I'm in my van as of next Tuesday. No where to turn. I'm 60 next month and just wish it was my last. I have tried many things over the years. Holistic, Reiki. Never had a massage before. Never could afford it. I'm lost here. NW Arkansas sucks for doctors. I'm lost
I highly recommend you read the 4th (latest) edition of "From Fatigue to Fantastic" by Dr. Jacob Teitelbaum and follow his SHINE protocol. Decades ago when most physicians didn't recognize chronic fatigue and fibromyalgia as being real diseases, I found help from a functional medicine/integrated medical doctor who specialized in fibromyalgia, chronic fatigue, and tick borne diseases. The symptoms of all three are quite similar. She had attended several of Dr. Teitelbaum's workshops and diagnosed and successfully treated me for chronic fatigue using his SHINE protocol and supplements. After feeling like death warmed over for months, my muscle aches disappeared and my energy levels returned to normal. Dr. Teitelbaum had chronic fatigue and had to drop out of medical school as a result. After he got his medical degree, he dedicated himself to helping people with fibromyalgia and chronic fatigue. He is one of my heroes. His web site, which I hope still has information about his SHINE protocol, is http://www.endfatigue.com. I still order supplements there. Please take care!
I know of his books and story. But he just sells his books and supplements. I'm now homeless for fibromyalgia and on SSI/SSDI. So I'm pretty poor. Lol. Darn it. I just want a doctor, a PCP, that cares and can refer me to like pain management, rheumatologist, or mad scientist that can do anything. In the 10 years I have been on SSI/SSDI For fibromyalgia , I haven't had one PCP that is a believer. Never had a referral or any real care. I was never a doctor shopper. If I did that they think your a druggie. I am not. Do I stay and suffer. But not now. Fibromyalgia has ruined my like and now left me homeless. So I am going to doctor shop now and will move anywhere. I had hoped to get in the Mayo clinic there in Rochester Minnesota but there full. They said try Jacksonville Florida mayo. I did this morning and they dont treat it. 2 classes on living with it. That's all. So the Mayo clinic let me down. So I'm looking for a mad scientist now. Lol. Any ideas?
@earthmands I'm sorry to hear you idea of getting to the Florida campus of Mayo Clinic fell through. Were they able to give you any ideas of where to go for assistance? Are you able to go back to the original dr who diagnosed the fibromyalgia and ask for help?
Ginger
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1 ReactionIt was a Social security doctor that did it in Ohio. I grew up there. I struck out there as fibromyalgia was still on the doctor hate list in 2012. I'm just ready to go anywhere that I can get a real primary care physician that Does believe and can do referrals to specialist or Mad Scientists. Lol. Wish Rochester Minnesota would take me. I'm so sad about that.
@earthmands Many things have changed since 2012, in the field of fibromyalgia. If you are on any medications, can you go back to that referring dr? If you have insurance, check with them, ask for their assistance to find a new dr. That's what I did when I had to change my kidney dr, and ended up with one who changed my life!
Ginger
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1 ReactionI'm only on gabapentin for the fibromyalgia. And heart meds. Any doctor I have had since just refills what I've been on for all these years. I do. Have a long lost brother in Florida I haven't seen in 30 plus years. I spoke with him last night and hoped on the Jacksonville Mayo but, not.... I still would like to just go that way. He cant house me. He is disabled and would love to help him a bit. Just would love to have a list of fibro friendly primary care physician around the Melbourne area. Would anyone at the Mayo clinic in Rochester have a list? Real important.
If you do a google search on doctors who treat fibromyalgia, you will find many sources that you can then narrow by location. This might factor into where you move. Three I found from doing a quick search are below. I deleted most of my response to you because I don't believe in kicking someone when he/she is down. The gist of it was you seem to be wanting someone to save you, whereas in reality you have to save yourself. I really hope you will pursue some of the good suggestions people have made in an attempt to help you and your living situation and health improve soon. Good luck.
https://www.vitality101.com/find-practitioners
https://doctor.webmd.com/find-a-doctor/condition/fibromyalgia
https://www.wellness.com/find/fibromyalgia%20doctor
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3 ReactionsReally? Artificial sugars? I have them all the time for years and I'm also having bad pain in my hip and knees. Hmmm, interesting, and I'll buy more pears also. I'll TRY to stay off splenda, etc., but I've had them for years. Now I have to ask -- what of the fake sugars may not be inflammatory? I don't eat that many sweets, but I do have sugar-free jello, also lots of coffee with splenda, etc., every day. Adding so many calories to my diet -- what shall I do?
Homeless? Sorry to hear that. I hope you have a place to stay though, and can find decent shelter that is more or less permanent. My brother-in-law was homeless, went to friends for a few years, finally got into government subsidized housing in Jacksonville. Hope you find something.