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Mar 27, 2015 12:54 AM

Hello,
I am also new. I have been diagnosed with fibromyalgia back in 2000 and was told to exercise and that is as far as my treatment went till Lyrica came out that didn't work for me. I was left to suffer now I am given minimulist of pain medication. Lost my job, 5yrs. No insurance,and still being jerked around by the doctor's

Mar 27, 2015 9:41 AM

Hey Momflyer, welcome to our group. I'm sorry you're having such issues with the pain and unemployment and such. Its not at all easy to deal with without a medical support team, and emotional support. What doctors have you seen regarding this? Let me tell you my story, and maybe you can get some ideas to approach your doctor with. One of your best docs will be a pain specialist, and another a rheumatologist.

I've had fibro symptoms since about 2008, but had so many other issues going on they didn't diagnose it until 2012. I have osteoarthritis, osteopenia, DDD, cervical radiculopathy & various neuropathies, chronic cervical & thoracic & lumbosacral pain, pelvic congestion syndrome & pelvic floor dysfunction (due to a 10+ cm paraovarian cyst), allergies and asthma, mitral regurgitation & low ejection fraction rate & angina, migraines & tension headaches, TMJ, vertigo, imbalance & weakness on my right side (brain scarring right frontal lobe, suspect TIAs), CTS, Sjogrens, damaged & malfunctioning thyroid, and autoimmune issues that they're testing me for MS, and severe fibro fog/forgetfulness, decreased focus & concentration (pseudodementia).

At first they gave me nothing. Then I went through 2 years of epidural steroid injections (ESI) at various levels in my spine, from pain specialist. That brought very good relief for my back until this year; its been 1+ years since my last injx. I was put on Cymbalta but after 6 months the pain increased as did my depression (near suicidal). A urogyn doc put me on Gabapentin a few months ago, first at 300 mg/dose then reduced to 100/dose -3x day. I have major med allergies and sensitivities so they're very careful adding or adjusting meds for me. I was on ambien for years because I couldn't sleep due the pain. I was weaned off of it and placed on antidepressant (antiD) and melatonin but no longer take the melatonin because blood work showed my serotonin levels were too low so they upped my antiD. I also have Tramadol for severe pain or use Tylenol Arthritis med, TENS unit, Voltaren gel rub, Tranxene for anxiety, Paragon Forte for muscle spasms on legs & back, Tizandine for cervical radiculopathy, and many other meds for non-pain diagnoses (DX); also rice packs (filled tube socks, knotted or stitched (I knotted) chilled or microwaved.

I've learned to identify body signals for when I can & can't do something or need to rest. All my doctors want me to exercise, preferably every day. Unfortunately with the new imbalance & SOB true exercises are not an option for me; I now walk with a cane and may end up on a walker. I bought a Fitbit to track my daily living movements, to prove to myself & docs that I don't just lay around. I have a dog now (last one died last April, just adopted a new one Saturday), and when I let him outside I go with him and walk the fence line. I can tell you that up until July 2014, I was truly exercising 30 min/day/3-5x wk, and I felt so much better. I had less pain and more energy. But I had to build up from 5 min to 30 min over several months, and some days I'd do a full hour. I had an incumbent bike with a chair type seat (it broke).

I don't mentally beat myself up for what I can no longer do, but it took 3 years of grieving and accepting the loss of what my life once was to what it is now. My life is topsy-turvey different from what my ideal life plans were, but I am still me. I try to stay positive and find laughter at issues helps me do so. I do have bad days but its ok, its allowed... anyone with chronic pain understands.

You'll find a lot of support here. And no matter if you laugh & joke, or rant and cry, we are all here for you. You won't be ridiculed or judged. Everyone has their own issues, some we share in common and others not. But caring and supporting, to let each other know we do not suffer alone is what's important.

I am a Christian and my faith is strong. I do not ask or demand God heal me. I believe everything that happens has a purpose, and my illnesses are making me stronger emotionally. Its affecting my ability to help my children and grandchildren, not monetarily but emotionally, in a positive way.

I pray for each person on here, and I'll be praying for you too. Take time to grieve the loss of your old life. And don't apologize when you're having a bad day...we all do. Good luck & God bless you finding medical support, and I pray you'll have a strong family & friends support system also! 🙏🌼

Mar 27, 2015 10:58 AM

Hello Momflyer!!! Welcome to the group. I'm sorry that you are suffering with no resolve. Unfortunately with hethcare as it is, doctors are not free to treat their patients as they see fit and many, I feel have just thrown in the towel (either because they won't get paid or they will be told they cannot use certain treatments. It's a nightmare for those of us who deal with horrible pain every day without reprieve. Do you have access tI a pain management doctor?? If so, if you have a PPO and not an HMO, you need no referrals and can call and make an appointment for yourself. It may be the best way for you to go. I'll keep you in my thoughts and prayers and hope you get some answers. 💕

Mar 27, 2015 7:51 PM

Hi Momflyer I am sorry that you are having such a hard time getting your meds, and health care. I have Fibromyagia, Syringomyelia, Osteoarthritis and other things going on with my health. I tried taking Lyrica, but it was like taking Tylenol. I take Savella instead and it really does make a difference in my nerve pain in my back, hips and legs. I can barely walk or get up and down. My insurance doesn't want to pay for it so my Dr has to resubmit it every year. Will be keeping you in prayers.

Mar 29, 2015 10:16 PM

thank you for the prayer support and I will also keep you in prayers however Sevilla I have taken and it did absolutely nothing I have taken almost every fibromyalgia drug on the market and none of it seems to work

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