Do you have #Fibromyalgia?

As many of you know,  my amazing wife battles Fibromyalgia every day. 

I was thinking and began to wonder how many of you out there are dealing with something similar? As special needs parents,  our lives are filled with stress.  How do you manage to make it through the day when stress makes the symptoms of things like Fibromyalgia much worse?

Please share a little bit about yourself and your struggle with pain disorders like Fibromyalgia…  Let show each other that we aren’t alone. 

**Thanks for reading**

       -Lost and Tired

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This was posted via WordPress for Android, courtesy of Samsung’s Galaxy S III. Please forgive any typos. I do know how to spell but auto-correct is working against me.

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Charie

I have something called Ehlers-Danlos Syndrome. The pain is usually mid level on a daily basis for me with very easy bruising and or tearing of skin and ligament. Dislocations are frequent (a few a year) and excruciating. We all know what a physical challenge children with special needs can be and it does pose specific hazards and stresses that a healthy parent probably doesn't face. My son is 12 with Aspergers and we have homeschooled since birth.
Between not having a typical school length break and having mobility and pain issues, life can be very stressful some days. My last doctor put me on a slew of pills. One for pain, one to sleep, another one to wake up, another one for the acid reflux from the first one…etc. He would get upset if I didn't take them. He didn't seem to understand that I can not be drugged up all day. I felt numb, dull, beige…unconnected with my son. I don't want to zombie my way through my childs life, besides, I am my sons main teacher. I changed doctors and the new doctor recommended a set of meditation cd's and a book about aromatherapy. I chose a set by Deepak Chopra and picked up a few beginner books on aromatherapy and started listening/reading before bed. My husband took over the parenting while I was meditating/reading and it worked out well. My stress levels became much more manageable and I have moved on to a different set of guided meditations and aromatherapy techniques that are specifically for reducing pain and relieving stress(and still cheaper than my prescriptions were before). They have helped immensely. The funny thing is, the drugs never worked as well as the meditations do. Why don't more doctors recommend them?

lostandtired

It seems that our individual situations may differ, that stress is a huge constant in everyone's lives. What if anything, has  your doctor told you about how stress impacts chronic pain? @Brianne Lynn @Carlyoung @KatMoody @MeaghanGood @WWOA @chefaimee @ciugola 

WWOA

I have fibro benn diagnosed about 4 years ago. My son is 10 and he has autism I have a 12 year old daughter. I homeschool them both and I am back in school at liberty university online to finish my Psyc degree. I take a few meds for fibro but I had to quit work 4 years ago stress at work, raising the kids and losing both my parents with in five years of each other kinda threw me for a loop. I always said I was in the middle of a nervous breakdown but I just didn't have the time for it!! LOL

lostandtired

 @WWOA You go 🙂 My wife and also say the same thing. We're in the middle of a nervous breakdown and never get the chance to finish it out. Sometimes, for my wifes sake, I wish you could just emotionally do what she needs to do, without worrying about how it will affect the rest of us. 
 
Stay strong and thank you for sharing. 🙂

chefaimee

Oh good, I tried to post the other day, in the old forum and it wouldn't let me. If you say fibromialgia in the Saint Louis area, it means that your whiny, lazy, and drug seeking. AND you'd better be at the PERFECT weight for your height as well. I actually had 1 rheumatologist that told me I was just fat. Actually I have lupus, Psoriatic arthritis, Hashimoto's Thyroiditis, degenerative joint disease, and I had a hysterectomy at 31 because of how hideous the endometriosis was. In fact, it had fused my bladder to my uteris with scar tissue. (By the way – if I say I have to pee, get out of my way!!!! I think something in there got very sensitized! I have also had to have 3 knee replacements so far – all on the same knee because the first one was so jacked up. I know chronic pain, unfortunately. I wish her (and the rest of you) all the best. And I'm sort of sorry I said I hate the new format – it must just really suck on my phone.

lostandtired

 @chefaimee Again, thank you so much for your honesty. My wife has experienced some of the same issues. We absolutely need for chronic pain awareness… 

KatMoody

Well, I've been diagnosed with Fibro for over ten years now. I'm in less pain right now than I've been for the past ten years (now as in the last few months), but I can testify to the increase in pain levels when highly stressed. I'm in a much better place with my pain these days, and I'm thankful for that, but I've had days where I was crying and unable to do much of anything. 
 
I think the psychological side rears up because any kind of chronic pain becomes so exhausting, dealing with it day in and day out. When you throw in the stress of dealing with children who have their own unique challenges … well, then you have a recipe for stress and flare ups in even the best of times. @Carlyoung @lostandtired 

lostandtired

 @KatMoody  @Carlyoung Amen to that. I don't have a chronic pain disorder but I do have chronic pain and have been living with it since 2001. It sucks. I have no idea how you all cope with that your body is feeling all the time. You are all amazingly strong and courageous. 

Carlyoung

I have decided I don't have fibromyalgia, or Lupus, or hypothyroidism.  I don't have two spots in my body that may or may not be cancer.  I don't have a problem with being dizzy anytime I am not sitting.  and I am not starting to get dizzy when I am seated.  I don't have numbness or tingling in my hands, legs or face.  I don't have an enlarged left ventricle in my heart. 
 
Am I in denial?  no, because I just woke up from the dream in which I didn't have any of these disorders. 
 
Now they are testing to rule out MS or Parkinson's Disease. 
 
Stress is not a good thing for people with any kind of auto-immune disorder.
 
My most recent post: http://whynotfathers.com/2012/08/a-long-night-med
 whynotfathers Lost_and_Tired Kats_Cafe 

lostandtired

 @Carlyoung  whynotfathers  Lost_and_Tired  Kats_Cafe Have you found anything that helps you deal with the insane amount of stress in your life? I'm trying to help Lizze with the same thing. She doesn't cope anymore? God bless you my friend. You are by far, one of the strongest people I know. 🙂

MeaghanGood

I just discovered your blog last night. You two are incredibly strong parents. I hope things get better with Gavin.
 
I don't have fibromyalgia, but I did have New Daily Persistent Headache. Yes, that's a real diagnosis, but it's a diagnosis of exclusion, basically doctor-speak for "we don't know what's wrong with you."  I woke up one day with this godawful headache that had me screaming in pain, and it basically didn't go away for 15 months. For awhile I was taking morphine (which I quit, because it made me sleep 20 hours a day), then fentanyl (which the doctor made me quit, cause it gave me severe hiccups). I refer to the whole thing as the Great Headache Crisis or GHC. They never really did figure out what's wrong with me, but I went to the Cleveland Clinic's I-MATCH program early this year and I was able to get my headaches under control. I still get them once in awhile, but they don't last for weeks anymore.
 
Anyway, as far as stress goes: I'm not sure that stress level affected my headaches. Sometimes maybe it did, but sometimes it didn't, I don't know. In February 2011 (four months into the GHC), my father had a sudden heart failure and almost died. He was in the hospital for weeks and they thought he'd have to get a transplant. (He has since made a full recovery. As in, like, miraculous. The doctors never saw anything like it.) In the middle of all this, I found out my parents were divorcing and had kept this secret from me for months. A lot of stress, right? But while all this was going on, the headache inexplicably stopped for three straight days, the longest pain-free period that wasn't caused by drugs. But then, last Christmas I was under a great deal of stress, and in horrific screaming pain.

lostandtired

 @MeaghanGood Thanks so much for sharing that. What is the I-Match program? Lizze is going to be going to their headache clinic ASAP. She has had this particular migraine for over 7 months now. 
I glad you got them mostly under control. I hope will find the same relief. 

MeaghanGood

 @lostandtired The I-MATCH program is an intensive outpatient program for people suffering from chronic headaches. They teach you how to manage the pain and live with it, with as little medication use as possible. They have a kind of "throw everything at you and see what sticks" philosophy. You go there for three weeks, all day, Monday to Friday. It's gotten kind of famous and patients come from all over. One of the people that was in the program while I was there was from Alaska.
 
I can honestly say I-MATCH gave me my life back and may have saved my life. I was suicidal a lot from the pain, and once I overdosed on pain meds and it took four days to recover. I just felt so helpless, convinced I would be in severe pain forever. 
 
If the doctors recommend it, and you can spare Lizze for three weeks (that might be a tough one) I HIGHLY recommend this program. You can Google it to learn more about it.

ciugola

I have crazy pain & episodes with all sorts of symptoms of something & I have debilitating migraines.  It's been going on and off  since 2005 & not a single dr can tell me what the heck is going on.  Really done with all the test, they think I have MS just can't prove it, but since nothing else shows up can't disprove it either.  They have tried to tell me that it's my way of reacting to stress & I should see a pysch, but it's not something that I am manifesting.  Kind of stinks the worst when stress piles on.  I am naturally high strung so that doesn't help either.  Gotta say though, when my son is at his worst I seem to get my calmest, maybe a coping mechanism…not sure.  I usually crash after the fact, late at night.  Luckily that's when sleep happens for me.  I watch my diet, read my bible & pray the good Lord keeps giving me strength.   I usually have just enough to do what needs to be done & for that I am always grateful.   Not fun having your own set of issues on top of the needs of a special needs child.  But we do it…Right?

lostandtired

 @ciugola Thank you for sharing . I know from my wife that there is a huge psychological side to Fibro, that doesn't mean the pain isn't real. There is way to little known about these chronic pain disorders. Hang in there and know that you aren't alone. 🙂 

Brianne Lynn

I push through it the best I can.  When it is terrible, my mom or mother in law will step in to help me out.  Yesterday was horrible for me.  I could barely move 🙁

lostandtired

 @Brianne Lynn Hang in there. My wife is there right now. We've had more rain in the last 24 hours than we have had all summer. She is in so much pain now. I'm glad you have support, not everybody does. 🙂

Brianne Lynn

 @lostandtired It has been a pretty rough summer so far this year.  I am really affected by the weather.  On days when it gets really hot, I am in a lot of pain and with all the rain yesterday- it was horrible!  Does your wife see anyone for pain management?  Or does she take any kind of meds that help?  I know that I have been told that exercise can help, but when I am in that much pain, the last thing I want to do is exercise!

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