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Fibromyalgia...my story

Oct 22, 2016 8:24 PM

Hi everyone,
I am 28 years old and was recently diagnosed with fibromyalgia, on top of occipital neuralgia, mps, depression, and anxiety.

However, I have had pain since I was about 14. Was mainly just tension headaches and tmj and neck pain. I finally started to realize when I was 25 that this wasn't normal. So I did about 9 months of physical therapy with no relief. I was given a tens unit and it offered no relief. I take medication for depression and anxiety. I have done trigger point injections and occipital nerve block injections and have recently started seeing a pain psychologist. I feel my pain is getting worse. I try and do yoga, take my dog on walks, Epsom salt baths. You name it, I have probably tried it.

I quit my job. I was written up for having too many medical appointments. I don't know what else to do. Has anyone applied for disability with fibromyalgia? Is there anything you've tried that has worked for you for your fibro pain?

Thank you for taking the time to read this.

Oct 26, 2016 1:39 AM

Are you in the U.K. Or US? I'm am currently awaiting a diagnosis for celiac disease or Fibromyalgia. My pain started in 2000 worse in thr past 3 months. I have read that a gluten free diet helps both. Give it a try, you may feel the difference in about a 1-2 weeks.

Oct 26, 2016 7:35 AM

Probably better to go for depression and get you GP to write a letter. It will get you through here in Australia.

Oct 26, 2016 5:04 PM

I am on disability since late 07. However they recently "reviewed" my case and they are now claiming my condition improved when it has not. I am appealing but terrified I could loose my insurance and meager income. If you are able to work do so as long as possible. I was fired after I had a reaction to the pain med duragesic. It greatly amplified my fibro pain (if it is in fact fibro and not something else, I have no idea) it also gave me severe chronic fatigue. I am sleeping 13- 16 hours a day now. I wish I could work as disability sucks but I have no other option currently. Good luck.

Oct 26, 2016 6:09 PM

I'm in the United States I did try a gluten free diet during my first round of physical therapy. Felt no relief, might try again though. Thanks for the tip!

I'm hoping to put off going on disability. I've got 5 interviews scheduled this week and have done 2 so far. I've been open with them about why I left my pprevious position and they were understanding.

I'm so sorry to hear that they think your condition improved. How can they judge something like that?

Oct 26, 2016 7:24 PM

Hi everyone, I also have been diagnosed with fibromyalgia along with, Osteoporosis severe in spine and hips, disk deteration in spine, recurring shingles, asthma and peripheral artery disease. I am 56 years old and way to young to have all this cap going on. Trying to deal with all of this is just over whelming. I was on all kinds of different meds, from pain pills, muscle relaxers and different types of medicine, I think I was taking about 13 pills a day (morning, noon and night).

I finally got off all meds but about 4 I still take. NO pain pills. I take lot's of baths with lavender or chamomile Epson salt. I drink green teas with relaxers in them, chamomile tea is the best it really relaxes you. The first of October my husband and I went to the mountains. We went into this little shop and found a lotion that was made to help with fibromyalgia, the name of it is called TWO OLD GOATS what a name right? It is essential oil lotion it has 6 oils which are, lavender,chamomile, rosemary,eucalyptus, peppermint, and birch bark. The website iswww.tooldgoats.com and the phone number is 1-866-324-3787. This lotion really does help. ANOTHER tea to drink is lavender. I hope that I helped a little.

Take care and good luck, I am open for more suggestions that are out there. Any little thing helps.
Donna Lee

Oct 26, 2016 8:23 PM

MrsQbush, I know exactly what your going through, I'm 32 and I've battled with fibromyalgia since i was 19 I was finally diagnosed 6 years ago, I lost my job also due to my sickness, I applied for disability in 2012 and I was just awarded may this year, fibromyalgia is a disability and if your going through what I go through everyday you need to apply, I'm on day 3 of a terrible flare up and all I can do is cry and pray, I have two wonderful children who also are a big help. I wish you the best of luck!

Oct 27, 2016 12:26 AM

Mrs.QBush - I too have had this since ideas a young teen. My doctors diagnosed it as growing pains. Go figure. Am 56 now and I promise I quit growing a long time ago. :) in 1999 my doctors told me I was killing myself with working. I.was a home health nurse. The fog got so bad I often forgot how to get to my patients homes. That terrified me because if that was possible I was worried what I could mess up with meds and treatments. Yikes! Instead of quitting work all together I tried working as a receptionist at a heart clinic. I lived 34 miles away. At noon I spent my hour in my car taking a nap. After work I had to stop at the roadside park on my way home and close my eyes for an hour. Got home, cooked supper and spent time with my teens (was a single mom) then went to bed. In early 2000 I finally had to quit work and file for disability. I filed as Fibromyalgia being primary then listed every diagnosis I had. I was denied the first time. But immediately I contested that and by the end of the year I was approved.

Every few years I get forms to fill out for the review board. I always fill it out the same day I get it and I include a note listing everything I have tried this year to help. I also list any new surgeries and diagnosis. I figured that just gave them a better idea of my trials plus I hoped it would help them see me as a person and not just a number.

Oct 27, 2016 7:43 AM

I have fibro. I went gluten free. It cut my pain level in half. If you have celiac you most defiantly want to go gf. Your intestines are damaged. There is a group on FB called Gluten free. There is another one called Foods for Fibromyalgia that is helpful. Another one is Fibromyalgia Family.

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